28/02/07, Wednesday : Operation Postponed [Return To Top]

Sarah went in to hospital today but we were then advised that the surgeon who was to perform the experimental procedure part of her operation had become unavailable until next Monday.

So although surgery was an option on its own, Sarah has decided to wait until Monday as the procedure gives her an extra bullet to be shot of her tumour after her surgery, plus it will assist in the doctors gather more data on this rare variation of tumour, and could help more people who suffer from cancer in the future.

04/03/07, Sunday :Sarah will be having a major operation on 09:00 Monday 5th March [Return To Top]

This operation is a left hepatectomy, which basically means the removal of the left half of her liver which contains the cancer, as well as the infected lymph nodes.

Sarah will also be undergoing an experimental therapy - tumor-inhibitory lymphocyte therapy, which is being tested as an alternative to chemotherapy.

Sarah will be checking into the hospital Sunday night, ready for her op in the morning.

05/03/07 Monday : Sarah's Operation was a Success! 10:12 to 17:30 [Return To Top]

Sarah's operation finally kicked off after NHS delays at 10:12 this morning which rudely interrupted our viewing of trailer trash on The Jeremy Kyle Show!. From that point she was in surgery for 6 and a half hours (Inc. recovery time), at the end on which emerged a groggy but amazingly composed and well looking Sarah at the end of the ordeal.

The prognosis was a positive one from the surgeon (and other surgeons pinned to the wall in the corridor outside, while passing during the op!), he advised that although the operation was more complicated than he anticipated, he had worked hard and achieved what he had set out to do, removing half of Sarah's liver, and about 20 lymph nodes around the surrounding infected area, some of which were successfully extracted and flown to Sweden with the surgeon assisting with the experimental part of the op.

Then Sarah was then placed in to intensive care with a nurse who will over look her though out the night. She's in good spirits, quite a bit of discomfort as expected and extremely tired, but the morphine is helping her keep a brave (and very big!) smile on her face, and she has managed to co-ordinate myself, mother and father with assigned tasks, one of which being for me to take home the 2 wardrobes of outfits she packed as she thinks the hospital gown will do for the moment....and I'm sure she packed a few sheets of lead in the bag I had to carry for a mile back to the car!

So I believe she will be transferring back to the Dawson ward tomorrow morning where the intensive care will continue for a few more days.

(Phot removed after Sarah found out and kicked my arse!)

06/03/07 Tuesday : Sarah's Road To Recovery Day 1 [ Return To Top ]

Sarah's first post op night was quite testing and tiring, she didn't get much sleep thoughout the night, waking every hour.

So I was welcomed by a grateful but tired Sarah at 8am this morning, by which time, the fantastic day shift team came in, and soon whisked Sarah into shape. Careful eyes were kept on her blood pressure as she has suffered a 3L blood loss during the op.

About half way though the day, most of the tubes were removed leaving her with the epidural for pain relief, and another tube inserted to her neck going to her heart for the “bleep…..bleep” machine! (oh yes I’m picking up the Jargon like a Jnr. Nurse here!)

The "Pain Team" paid her a visit early afternoon (a team which specialise in relieving pain.... not inflicting it as I first thought!), led by the head of the department, so Sarah was given VIP treatment, and administered some top class opiate drug, and since then, she has really sparked up and become more chirpy, which after her ordeal, was great to see.

She moved back to the Dawson Ward, tomorrow brings a physio and no doubt leaps and bounds in Sarah’s recovery.

She's still quite exhausted, so try to be aware of this and bugger off when she starts to wilt!! As Sarah is too much the perfect hostess to say anything.

07/03/07, Wednesday : Sarah's Fast Track To Recovery Day 2 [ Return To Top ]

Well, when I said yesterday "tomorrow brings a physio and no doubt leaps and bounds in Sarah’s recovery" I was of course speaking metaphorically, but Sarah appears to have taken my flippant comment literally! Again she amazed me by sending me a text at 11:00 to tell me that the physiotherapist had been, to advise me that she had managed to get her self up and walk up and down the corridor!! (although it did apparently involve quite a bit of pain and light-headedness) AND that she could now eat and drink normally!!

Another step forward was the removal of the arterial tube in her neck monitoring her heart (replaced with a smaller one in her arm). It seems each day she makes great progress. Also ahead of her birthday, I bought her a PSP to avoid brain numbing in the hospital so she'll be brushing up her skills with the fighting game Tekken I got her so be warned if you get challenged! At least she will be entertained when visiting hours are over.

Also I took in the e-mails for Sarah to read, she really enjoyed reading all of your messages, and she wanted me to put on the site that she was really touched and to thank you all.

08/03/07, Thursday : Sarah's Recovery (Good Moan'ing) Day 3 [Return To Top]

Not such a great day for Sarah today. First during the night the stiches holding the tube in to her tummy which drains excess fluid from her liver area to a bag, fell out! and the ooz leaked out over her.... lovely! leaving a hole in her side (...puke!)! The nurses scratched their heads then stuck a bag on her to catch the leaking fluid, I personally would of gone for the "Blue Peter" approach and whacked on the sticky-back-plastic! much more professional!

Plus during the night, the nurses tried to turn down Sarah's pain relief, which was met with enough resistance from sarah to force them to put it back up!....shame i missed that!

Then she went for a CT Scan to check her current status, another thing to add to the "Moan List" when I arrived (poor thing), here she had to get unplugged from her pain relief (epidural), then Sarah played bumper cars in her bed with the walls all the way down to the CT scan area... I think the nurse must have been either drunk, blind, or needs learner plates!!

All that and the overall "fed-up-ness" was getting to her a bit, and with Sarah being the type of person that goes nuts if see doesnt keep busy, being tied to a hospital bed drove her a little nuts!

But this all turned around when Sarah's visitors arrived (me! with her mother in tow!), so after she took us though her "moan list" she was back to her chirpy self, and even showed off by getting up having a (very small) dance on the spot!

Then came the delights of hosptial food, which looked like it had been eaten and spat out by a few patients before it made to her self

Also the plaster o her neck came off where the previously removed tubes and monitors were, to reveal what looks like a vampire attack!

Anyway, thanks for reading my drival, I leave you with this last pic of Sarah's Neighbour patient :

09/03/07, Friday : Sarah's Recovery Leap Day 4 [Return To Top]

Well, today was a roller coaster of emotions!! Sarah called me with a great excitement in her voice about 9 this morning to inform me that the Doc's had been round, and advised her that she was making such great progress that her estimated discharge day will be monday/tuesday next week!!! just in time for her birthday!! HOW WICKED IS THAT!!

For those of you who have booked visiting days next week, fear not as you will be welcome to visit her at our flat in Greenwich.

Then, about 4pm I got a call from a very sad Sarah telling me that she had been feeling really groggy and that she had been sick! I cant even begin to imagine the what it must have been like for her to heave when she's just had an op on her tummy! ouch!

But on the plus side, she had her 2 sisters visiting, Emma and Lizzy, and her mum there to help comfort her. The Consultant advised that it will take time for her stomach to function propely again.

So was this going to be another "Moany Day"? Well, Sarah managed to get some shut eye and sleep off the nausia, and I was welcomed be a very smily Sarah, who then sprung in to a flurry of chatter about her eventful day.

The next event was the removal of her epidural! bringing her total overall tube count from 10 to 2!! she was a bit nervious about this because she would be moving her pain relief to tablet form, but she will be getting morphine from time to time instead, so get ready for stories abot panda's and dogs running around her bed! (Very strange girl!....but funny!)

Then the "oozze catching bag" was removed (technical jagon again!) (see below....and not for the faint hearted!!)

Once this was off, her first mini mission was to get straight into her own nighty,

Trading this sexy little number! :		For this little number :

She asked me to say "I'm not fat or pregnant, just swollen...." (All lies, its clearly her being lazy and eating cakes all day when I'm not there!)

So thats about it for today, I left Sarah after breaking all hospital rules by staying there to a whopping late 9pm!!....such a rebel! But I made sure she was comfortable and smiling when I left, with here PSP at the ready for another night of Tekken fighting entertainment.

10/03/07, Saturday: Sarah's Lazy Recovery Day 5 [Return To Top]

With the epidural out, Sarah's body started to ache though the night (well what can one expect when coming off of a class A drug!), so she struggled to get comfortable, driving the other ward patients nuts through the night by adjusting her bed every 5 minutes! (For an impression of the sound of the bed - click here) but this didn't stop her reeling out a long list of orders for me to bring her 2nd wardrobe in to the hospital!... so visitors can expect a fashion parade!

She told me about her discomfort, and that her legs and torso had swollen up with fluid, but she was visited by the surgeon who advised that because several lymph nodes were removed, her body is retaining fluid which is usually drained, but that should get better over time.

Sarah said she had been weighed, and that she had put on 10lbs in fluid, and that it had absolutly nothing to do with the conveyor belt of cream cakes and Krispy Creme Donughts she had been scoffing since her arrival!!

But fear not, her discomfort was helped with ora-morph....so the fairies were out partying with the panda's in the magical forest thoughout the night! Not quite cutting the mustard as effectively as the grade A stuff, but I guess that has to stop to prevent me living with a junkie later on!

On the Plus side another tube was removed, leaving just one in her arm. All in all, other than the aches and pains, Sarah's day was quite relaxed and easy going visited by myself and my mother Jenny Day.

WARNING : All visitors, please ensure that your jokes are crap! I cracked a few funnies, and was greeted by a very cute, but strained yelp of laughter / pain, which then led to "giggle because your not allowed to or shouldn't" syndrome! (mainly by me!...opps!) Lovely to see the smile none the less, but try to avoid. So I will have to cancel Jimmy Carr's and Dawn French's visiting appotinments, sorry guys.

That's about it for todays installment....stay tuned for tomorrows exciting news on.....Dawson Ward!

P.S : was held at gun point to do a "shout out" to Sarah's dad, compliance officer of the universe, Alan Wilson who is upset that he has not been mentioned seeing as he has been here every day... ALAN - THIS IS YOUR 4 MINUTES OF FAME!

Photo taken at his last karaoke debut

11/03/07, Saturday : Sarah's Busy Busy Recovery Day 6 [Return To Top]

Today's leap was another big one. Sarah texted me in the morning to tell me that she had managed to have her first shower all by her self.....(first time in months!). So ladies and gentlemen, you no longer have to wear your hazard suits and gas masks to visit her!

Also she told me that her tummy had been hurting quite a bit though the night with water retention, and she was given a couple of doses of ora-morph, which gave her some crazy hallucinations of a hare racing around, with a clock for a face with the time spinning round really fast...and some how while falling away from her! all coupled with the feeling of being on a train with the scenery whizzing by in the window...... so I will be checking myself into hospital next week to qualify for the same experiance! She also sent me a picture message from her phone of her scar which has been unbandedged...which made my knees wobble and want to puke!.....Thanks Darling!

Theres a pic of the scar at the bottom if this page...so don't scroll to the bottom if you dont want to see it!

Anyway, Visiting hours kicked off with a bang, with a much welcomed visit from her Uncle Ray and Aunty Rosaria, Sarah astounded us all by being able to get out of bed, and walk down to the visitors room (show off!), and Sarah enjoed catching up with family gossip and stories.

This was followed by her good mates Louise and Rebecca, who made her laugh so much, the yelps of laughter / pain made a number of guest appearances once again. I left them to it so they could catch up, and to give Sarah the opportunity to moan about the time I accidently yanked the tube in her nose after the op! or talk about what ever girls talk about when boys arent around!

Then came the parents, Alan and Christine, again, I left them to it to have a bit of quality time.

Lastly, there is still alot of chat about sarah coming home possibly tomorrow / Tueday! I can't wait!

Here it comes.....

Nearly there!.....

And here it is!

Ouch! poor thing, at least it's quite high up. (And yes mother wilson, Sarah did agree to this photo! :-) )

12/03/07, Monday : Sarah Comes Home! Day 7 [Return To Top]

Today we kiss good bye to ridiculously overpriced and inadequate coffee, we wave farewell to extortionate school dinner quality canteen food, Sarah turns her back to the most disgusting, pre-chewed hospital food!..... I shed a tear over no more daily Domino's pizza and curries with all the trimmings! Yes that's right, you will find me on the roof tops shouting...

SARAH'S HOME!!!!!!

At 06:20 this morning, (with my alarm set for 07:25 I might add!) I got a fantastic text from Sarah telling me she had been told by a nurse that she could very well be going home. Then....somehow, crammed into this little text message came a stream of orders and requests for bags and shoes and coats... so as hard as I tried, I couldn’t get back to sleep with the countless tasks I had running around in my head!

So in-between frantically running around the house, tidying, vacuuming and cleaning, I managed to get hold of her on the phone to get more specific details on tops required, I was advised to bring in her turquoise top, her exact words were..."you know....the v-neck one"....... so with a blank face and an aimless rummage, about 50 turquoise tops were crammed into a bag, and a military operation was co-ordinated with the mother-in-law (wanna-be!) to collect from me at work.

Sarah made it back to a warm and much missed home about 3pm this afternoon! and soon filled the house with pleased smiles and snuggled up with her own duvet!

Still in pain, and high as a kite on drugs, this journey isn’t over yet....but we are so much closer, and Sarah is some how showing us all how much of a super woman she is. She's very much in tune with her needs, first, not allowing the nurses to discharge her with measly Paracetamol for pain killers, and ensuring she get a few packets of "the good stuff" Tramadol (with a little assistance from the "Pain Team"....remember? the guys who help prevent pain, not cause it!), second she has her slave fingers clicking at every whim….. (make the most of it!)

So I came home to a very happy but somewhat emotional Sarah, and the yelps of laughter/pain said hello once again as I couldn’t help but tell Sarah my stories of the day.

Visitors : Those of you that have booked days, they all remain booked, but obviously you are invited to visit Sarah at our home. And obviously, we don’t wish to put our home address on the internet, so for those of you that don’t know it, drop us a mail and we'll e-mail it to you, but Sarah would love to see you.

Updates : I will scale down the updates on this site, although it has been a great way to give you all daily updates though this difficult time, I’m sure you don’t wish to hear about Sarah's every bowel movement and every nap taken!, BUT....to all you Sarah fans out there, I will update and the site once a week so you can check on her and see how she's doing(probably at the weekend), and with new bookings I will update as soon as I get them.

Thanks again for all your support, text messages, e-mails and card, you all have really helped us both, and have given Sarah that extra bit of encouragement that has brought her home so soon.

Cheers

Dave & Sarah

12/03/07 to 18/03/07, Recovery Week 2 : Sarah's Birthday Week [Return To Top]

Wow, well what can I say other than that Sarah is truly a remarkable girl, I'm left stunned and jaw dropped with the amazing progress she has made. If you could see her now, you would never think that she had major surgeory just 2 weeks ago! (Apart from the moaning...which I'll let her off with! ;-) ) Below lists a brief scoot over each day.

Tue : After a rough night's sleep of waking up throughout the night and needing help getting out of bed to visit the loo (Super lazy cow! ;-) ), Sarah started her first full day back home being tired, but happy and smiling to be back in the company of her 45,000 pairs of shoes, a sofa planted in front of the TV, and slaves running around for her like mad hatters! She had to pay a visit to the local nurse to get her dressing checked out (I later found out that means that she got her bandages checked out, not that she went to compare outfits with a random nurse!). Guest appearances were made by Mother in the afternoon, then Katherine and Netis in the evening, letting her catch up on gossip and show off her lovely scar!

Then at bed time, Sarah had a tap on the shoulder from her war wound as she needed to cough which caused her great pain as she found out that stomach muscles pay a large part in coughing even slightly, but it didn’t take long to pass and Sarah was smiling once again.

Wed : BIRTHDAY DAY!!! I took the day off, and started her morning with bagels with soft cheese, layered with smoked salmon. Shortly along came a truck to the front door to pour the cards though the door which had Sarah's eye's lighting up like a big kid. Then the day amounted to us chilling out all day together, watching DVDs and TV until her mother arrived in the afternoon and cooked us a lovely meal.

I managed to find asuitable birthday cake:

Yes thats right, I found a cake based on the game "Operation"!!

I’m not too sure what a turtle is doing on his belly as a body part, or a cola bottle in the leg, either way it managed to get a 5 out of 10 rated laugh from Sarah.

Thur : Thursday kicked off like any other day I’ve had for the past 9 months...me getting up for work while Sarah stretches across the entire bed with a sleepy grin of contentment on her face as she has the entire bed to herself for hardcore sleeping! Only to my surprise, I woke to find Sarah was now able to sleep on her side!! (her favourite sleeping position), where previously she hadn't be able to do this without causing herself pain.

Then there I was sitting at work listening to people moan at me about their PC problems, when suddenly I got a call from Sarah saying "don’t kill me......but.....I shaved my head!" which prompted a loud "WHAT!" from me in a quiet office! Sarah decided that as honourable as the remaining hair from her chemo was, the new hair growing thick and fast underneath made the old hair look like a sweep over, and it was time for it to go!

So I spent the day thinking I was going to be living with a Britney Spears wana-be and that maybe the operation had more of a physchological impact to her than I first thought, and really I was living with a crazy nut case!

But when I came home I found that she had done a lovely job looking as elegant and sophisticated as ever

What I first thought :	What she actually looks like!

Then Sarah's Mum, Christine, took her to a cafe at the end of the road in the afternoon, which Sarah pranced off to, but then found it nearly impossible to get back.... Typical Sarah testing her limits to the max if you ask me!

Later on in the day she was burdened with increased "stomach upset" (if you get my meaning!) which again tested her stomach muscles while in the company of Vikki.B. She was advised to go to the doctors immediately who thought it might be a reaction to the antibiotics she had after the op which causes the bacteria balance in her stomach to contain more bad bacteria than good. But this left Sarah feeling pretty wiped out for the latter part of the day.

Fri : Mother Day picked up the Friday shift, and Sarah wsa driven to Greenwich park for a coffee before going back to meet her visitors - sister Emma and nephew Willem. Followed by Ian and Helen in the evening. Other than that, not a great deal happened on Friday.

Sat & Sun : We were paid a visit by Alex and Kelly who fantastically ditched the gifts of flowers and choccies, and bought us a curry! great stuff as it's been a while since Sarah has had one. Other than that, I've glued these days together as the 2 days were blended together by eating birthday cake until we felt sick, watching excessive amounts on TV and DVDs, sleeping, talking about how funny it was that we hadn't left the house all weekend! (well technically I did because I put the bins out!), more sleeping and a lot of TLC.

So we will be entering the 3rd week of recovery well rested and ready to see what else is thown at us! and the good news is that Sarah's slowly going cold turky on the hard drugs and doing very well on just a few in the evenings.

Anyway - that's about all guys and gals. Hope you are all very well and the tune in next week for the latest on how Sarah's doing.

Dave & Sarah

19/03/07 to 25/03/07, Recovery Week 3 : Sarah's Recovery [Return To Top]

Hello and welcome to the latest update on Sarah. I hear that a lot of you have been waiting for this with bated breath, some even waiting in desperation for the latest instalment on the super bionic woman, Sarah Wilson!!!

MON – Sarah’s mum arrived bright and early with ingredients to make soup, cakes and other culinary delights. She also took Sarah for her first trip to Sainsbury’s, which she found quite tiring but was pleased to have accomplished. Monday also consisted of some moaning, wining, and throwing all the toys out of the pram, but enough about me as Sarah was in quite high spirits! (Probably down to some hardcore, full on, over-sleeping at the weekend! But very much needed by both of us).

TUE – My mother took Sarah to Bluewater (accompanied with a grannified fold up chair… lovely!...She’s such a trend-setter!) to help Sarah find light silk jim-jams to avoid rubbing on her scar. Then in the afternoon, Sarah was graced with the company of her work pals Katy and Monica, who I’m sure didn’t keep the conversation to shop talk – unless you include Oasis, Top Shop, or any other high street fashion store.

WED - Sarah got a call from the Professor who performed her surgery, to update her on the experimental treatment progress. The good news is that her anti-tumour white blood cells which have been extracted from her lymph nodes, are successfully harvesting in a Petri-dish somewhere in Sweden and all is going to plan (it seems even the tiniest parts of Sarah don’t do a half job on anything and have to do a job well!!). She was also advised that they need more of her blood in Sweden….we’re not sure why. But it sounds like they’re cooking a little shop of horrors over there…either that or a 2nd Sarah! (oh god I hope not! I’m run off my feet with orders from Sarah. W the 1st!) The official name for this experimental process is Tumour-inhibitory Lymphocyte Therapy.

Then, in the evening we got a visit from a good friend, Kat, who came equipped with a shower of extravagant pamper gifts which were very gratefully received by Sarah and a bumper bag of Malteasers, which were gratefully received by Chubby Chops (me!).

THU - So as requested, Sarah totted up to Kings hospital early in the morning to give blood accompanied by my mother, Thankfully I escaped that appointment as although however military and organised the NHS hospitals are, you can never guarantee what day or week you’ll get out of there! Even for the most minor of appointments!

So, after the staff had worked out why Sarah was there, and also thankfully worked out that she wasn’t there for another operation (!) she was waited on hand and foot with cheap machine made hot chocolate and luxury short bread from the local co-op. This was to prepare Sarah for giving what the nurses considered to be a lot of blood, so Sarah scoffed the lot! Sarah was also quite chuffed as she found that the colour of Tourniquet used to take her blood pressure, matched the colour of her turquoise top! (must be a girl thing!)

She finally managed to escape after just 3 hours and 90ml of blood lighter. All of which proved extremely exhausting for Sarah (either that or my mother’s incessant and relentless rambling on!), so Sarah spent a large chunk of the afternoon sleeping her cotton (DVT) socks off!

FRI - Friday day time didn’t amount to much as Sarah discovered the Brain Training game I bought for the PSP on her birthday…. So it looks like Sarah’s turning into a game playing IT geek!....like me!

Late morning, she spoke to the local GP who gave her the results of some tests for viral infection, which were negative. It was good to rule that out and the GP explained that it will take several weeks for her digestive system to return to normal after the massive assault she has had on her abdomen.

Now, I’ve been paid off to mention Sarah’s mother Christine as it appears that I‘ve neglected to mentioned her for a while, even though she has been here helping us a lot (how very dare I!) so here you go, your 4 mins of fame mummy Wilson, EVEN though you didn’t iron my shirts!! But Christine was busy baking a lovely banana cake (again…paid off to say that!) then Sarah’s mum and dad took us all for a post birthday meal.

SAT & SUN- And the weekend was spent doing what we do best, being very lazy. The highlight of the well spent 2 days was getting a new phone for the house!....WITH answering machine!!! WOW!.....(sad!)

All in all, Sarah’s mobility is improving day by day, and the progress she is making is seriously shocking and impressive! She is still suffering from a bit of discomfort along her tummy after meals, it still hurts to laugh or cough and the areas at the ends of her scar are very slightly weeping during the night. However, Sarah has started applying Keyline Brands Ltd “Bio-Oil” to scar sights and we have already seen some good results on her neck and arms (from cannulas), and the appearance of main scar on her tummy is less red.

Neck before	Neck after

Scar before	Scar after

That’s it for this week, again, sorry it’s only once a week, but you will have to persuade my boss to pay me to update the site at work! (As if that’s gonna happen!)

Thanks for reading and tune in next week for the latest instalment of….

BIONIC SARAH!!

26/03/07 to 30/03/07, Recovery Week 4:
Tumour-inhibitory Lymphocyte Therapy Drama
[Return To Top]

Welcome to the latest update on Sarah. It's been a bit of a rollercoaster ride this week and our bums have been on the edges of our seats!, so we've used the theme of the tv show "24"

Tue – Sarah received a letter from the surgeons summarising the operation and treatment so far, which included some amazing news. After the tumour had been extracted, it was taken to a lab where it was confirmed to be Fibrolamellar Hepatocellular Carcinoma. Also, when examined, they found “significant necrosis of the tumor” (meaning a lot had died!) since diagnosis! and that the majority of her blood levels and liver function test results had returned to normal since the operation.

Thu – The plan was for my mother to pop round in the afternoon to cook dinner with Sarah. This plan went to pot after single phone call. In true NHS fashion, Sarah got a call from the bed manager at Kings College Hospital giving her an amazingly generous 3 hours to pack her stuff and get into hospital as her anti-tumour cells were ready, and were apparently being transported over from Sweden as they spoke!!

Off she rushed where I met her after work, only to find that the cells weren’t expected until the next day (?) so she stayed over night at the hospital surrounded by weirdos and crazy people. (no I wasn’t there as well!)

The next day felt more like an episode of 24!!

The following took place between 09:00 and 10:00

Having been awake for 3 hours, Sarah was visited by a team of doctors on their routine doctors’ round. They were aware of why Sarah was in hospital but had no information for her on what would take place and when. They were waiting for news from Sweden and from the Professor.

The following took place between 10:00 and 11:00

Sarah reached entertainment saturation levels in a ward of weirdos, so tootled off with her Mum (who had turned up to provide moral support) to the much loved extortionate cafe. Whilst sipping peppermint tea, she was called by a Dr on her mobile advising her to rush back to the ward to go through the procedure due to take place that afternoon. The Dr explained that the Professor was in Paris (lucky him!) on an assignment and that he had been asked to oversee the procedure in his absence.

Sarah was told that the cells were due to arrive on a plane from Sweden at 16:00, that they would be administered as a cell infusion (similar to a blood transfusion), which would take about an hour. She was also told that she would be able to go home after the procedure as no side effects were expected and she would only only need a couple of hours observation – so should be able to go home around 20:00.

The following took place between 11:00 and 14:00

...Waiting…

The following took place between 14:00 and 16:00

...Still Waiting....!

The following took place between 16:00 and 18:00

A confused Dr arrived to advise that the cells had not arrived at the hospital and went to investigate – suspected delays at London Heathrow (have you ever heard of such a thing!)...so the clock started ticking.

The following took place between 18:00 and 20:00

Myself and Sarah's Dad arrived on the scene followed shortly by a flustered looking Dr. He had been on the phone to Sweden and to various courier companies since they last spoke. He was under the impression that plane had arrived but that the cells were not unloaded in Heathrow. It was believed that the cells had been left in a fridge onboard the plane which had since returned to Sweden! However, the plane was due to come back to London at 21:00 – and would be searched a 2nd time thoroughly. The Dr explained that there were two critical factors regarding the cells :

1. That they could only survive outside of the lab or Sarah’s body for about 24 hours (so until about 13:00 on Thursday; and

2. That the cells had to be kept below a certain temperature or they would expire and thousands of pounds of work and 3 weeks of hard graft by egg heads would be lost!

.
A Worried Swedish Egg Head

The following took place between 20:00 and 22:00

...More waiting!...

The following took place between 22:00 and 23:00

The Dr (who should have finished his shift at about 20:00) told us that the situation had taken a turn for the worse. The plane had arrived back in London but the cells could not be found onboard!. The Dr then explained to us the unbelievable process used to transfer the cells from Sweden to Kings College via about 45 courier companies:

Swedish Courier company (A) were to take the cells from the Swedish institute to the airport. Then another company (B) had the responsibility to pack the cells onto the plane. The plane company (C) physically fly the cells to London. Then another company (D) had to unload the cells and hand them over to courier company (E) to transport the cells from Heathrow to Kings....and last of all to throw in the mix there was a 2nd courier company working alongside courier (D) that also unloaded the plane of different cargo. (Wonderful process! I can't see how it went wrong!)

Companies A and B confirmed that they had couriered the cells and packed them onto the plane but were unable to produce proof! But companies C and D said they had not received the cells at Heathrow and that they were not onboard the plane.

With a lack of documentation tracking the cells, and an array of couriers waving responsibility, it was almost as if they had vanished! The Swedish researchers were apparently "beside themselves" and we were clearly upset because Sarah needed these cells as an alternative to the harsher chemo…

The following took place between 00:00 and 01:00

An exausted Dr began to give up hope of a resolution that night, and advised Sarah to stay for an additional night just in case the cells turned up. Therefore, he headed off home, leaving his phone number so that he could come back in should the cells arrive. Myself and Sarah's Dad, Alan, didn’t want to leave it at that. So, before the Dr left, we got a list of phone numbers for all the couriers and other companies involved and decided to head back to base in Greenwich to organise an assult on the situation.

At this point, a call came from the Chairman of the Swedish courier company to say that they had found evidence that the cells had been loaded onto the plane, pointing the finger at the unloaders and couriers at Heathrow. Alan started on the calls while waiting for a taxi (one did arrive for someone else, and was nearly bribed into taking us instead until the real customer turned up!)

Alan explained to the "soon to be closing for the night" courier company at Heathrow, what the package actually contained, it's monetary value to the Swedish Institute and its possible impact on Sarah's life, reducing the night boss (Tom) of the company to a humble and apologetic but ever-so helpful man. Alan turned the heat up by expressing the 2 key factors of time and temperature and pressed for alternative methods of locating the cells, calling in Heathrow security if neccessary. 10 minutes later we received a call...

THE CELLS HAD BEEN FOUND!

Tom had reorganised his troops and located the package on the tarmac!!!!....yes the tarmac! but thankfully it was a cold night, and the package had been kept cool, although how cool he was unable to tell (how many couriers have a thermometer in their back pocket?!)

The next mission was to get the cells back to Kings....not a problem one would think for a courier company... but sadly yes, as "its difficult to get a taxi on a Friday night!" we were told!... (to this day, I'm still left astounded by that comment) but never the less Tom began sorting out transport at his end.

Meanwhile, back at the hospital, we cancelled the taxi and headed back to the ward to see what arrangements they could make from there, on route, calling the Dr who was on his way home, who immediatly turned round and headed back to the hospital (now THAT'S service!)

We went to the ward, and found that YES they had a special Medical courier service arrangement, but a code was required to authorise and activate it! leaps of joy were quashed by the fact that no one knew the code! At which point our Dr of the hour walked in, returning from his wasted trip. He jumped into action and co-ordinated another courier code, then amazingly, got the taxi to pick him up so he could collect the cells from Heathrow himself! (well, you know what they say...if you want a job done properly....)

If you are wondering what Sarah was doing all this time, apparently she was brushing her teeth and getting ready for bed!!

The following took place between 01:00 and 05:00

After 2 hours of waiting and anguish (not to mention the copious amounts of cheap tea), the Dr got back to the ward, holding the one thing we had all been waiting to see for so long, the same item that had eluded us for almost 12 desperate hours and had been left on the tarmac of a runway like a discarded starbucks coffee cup....THE BOX!:

And the contents....what the fuss was all about!...

The Dr checked the temperature and confirmed that it was 100% fine, stable at 8 degrees. But, just when wethought it was all over and that no more problems could possibly arrise, trying to find a nurse trained to use Sarah's port-a-cath proved to be a mission in itself:

Sarah's Port-a-Cath

So with no one available, the Dr ordered the installation of a large catheter into one of Sarah's tiny and already punctured arm veins. This was successful and the one-hour cell infusion could finally.....finally take place!

It all finally wrapped up at 04:30 and we all lived to see another day. Sarah suffered no side effects from the infusion and was closely monitored throughout. The good Dr was able to go home - 8 hours overdue - as were me, Sarah's Dad and Mum who had been waiting to hear that the procedure had gone ahead without further complications.

Sat - I picked up an incredibly tired, but vibrant Sarah on Saturday afternoon, having been given the all clear to go home by the Professor (back from Paris) that morning. She was very pleased to be going home:

I took her home where she made her very first mission to get in her own bed and show off her sleeping skills!

Quick summary on Sarah's recovery from surgery - she had her first proper sneeze on Saturday (usually the pain stops them in their tracks), laughing is becoming less painful and she is increasingly more mobile, the only downside is that she is still suffering from an upset stomach, but is receiving medication.

That's it for this week. Thanks for reading.

30/03/07 to 21/04/07, Recovery Week 5-7: Road to Recovery [Return To Top]

Well, apologies for the delay in updates, as I have been celebrating since the great news that the cells were found and infused sucessfully, but I’ve finally pulled my finger out, sat down and updated this site.

At Sarah’s last consultation with the Professor at Kings, he basically advised that she doesn’t have to have chemotherapy for the time being because she has had the alternative (and experimental) cell therapy, but she will be monitored closely with check-ups and scans every 1-3 months.

The Professor also told Sarah that the kind doctor who helped us that dramatic night of the cell infusion is going to take a while to get over it and is still talking about it even now!

But best of all, he advised her to try to get back to living her life as normal, which lifted a massive weight from all our shoulders and greatly lifted sprits. He also advised that once Sarah has made a full recovery from the surgery, there’s nothing to stop her taking a well deserved holiday. Only trouble is that Sarah’s been ringing around for travel insurance, and people are reluctant to insure her so soon after an op (at least a few hundred pounds for a week in Europe on insurance alone!), but we’re planning a sun drenched, peaceful beach holiday with white sands and clear water.

So the road to recovery continues, and there are still a few corners left unturned, but Sarah’s recovery has amazed me at every step. The scar is getting better too:

The pain is greatly reduced (when laughing at my crap jokes!) and she’s becoming more and more mobile in short bursts

We will leave this site up for anyone who discovers it and may be able to anything from it, and maybe one day I can motivate the inner-geek in Sarah to edit this site and fill in the gaps of the facts on the other pages.

We will post updates if there is any news to report so I also suggest that if you are reading this then signup for the e-mail notification about updates to Sarah’s Progress page (i.e. mail us and let us know). Therefore, when its updated, we’ll pop a mail in your inbox to tell you to check it out – All are invited and welcome as we know a lot of people have been following this site on and off. So if you don’t sign up, we won’t send a mail (to save the poor sods that have an “ever full” inbox at work!)

Once again, thanks for all the lovely messages and support you have all sent, each one has touched and encouraged Sarah. All feel free to drop Sarah a message on the message / blog page.

Ta ta for now,

Dave & Sarah

22/04/07 to 26/07/07, Recovery Month 4 : Sarah's 4th Month Post Op Update [Return To Top]

Firstly, apologies, I recently had problems with the website. This of course has now been sorted after throwing all the toys out of my pram and having to cough up $30. Also, we’ve been a bit lax on the old updates as there’s not been much drama going on. Anyway…

HOLIDAY: Sarah and I finally made it to that well deserved and greatly needed sun kissed holiday! Lanzarote was the place of choice (well not really a choice as I only had a few days left of holiday and had to combine them with a bank holiday w/e!....so we ended with a choice of Lanzerote or Skegness….it was a tough choice!)

Sarah and I finall enjoying the sun

Sarah enjoying the splash of the clear fresh sea on her feet

We spent a week there over-eating fully inclusive meals, burning our feet on the sand as luke warm sea water splashed our toes, ridding camels and laughing at their toes (! Do a Google search on camel toe if you don’t get it!), fighting gale force winds (my god it gets windy over there!!) and simply relaxing and totally enjoying ourselves.

WORK: Sarah started back at work part-time in mid-May and has now worked up to 4 days a week on reduced hours (slacker!) She seems to be really enjoying it – especially as she has been going out to lunch with all her colleagues. She has also re-joined the work gym and has been doing Pilates and going swimming (steam room, sauna, Jacuzzi…) to rebuild her strength and stamina. All which has been great for me because it means she doesn’t have time write me a list of chores for me to come home to each night, and it means she doesn’t use every single piece of cutlery in the house though out the day, waiting for me to wash up!

TREATMENT: Sarah had a scheduled CT scan a few weeks ago which I took the day off to accompany her on. The CT scan was to look at the progress of her liver growth and to see if any new tumours had formed. So there we are, sitting in the waiting area (bored out of our brains by the general pace of the hospital) when our hero doctor (the doc that chased her lymph nodes around London for us last time) came running up to us saying “Sarah, I’m so glad I’ve found you, I need to speak with you privately urgently” at which point we both poo’ed our pants and trembled over to the corridor with the doc expecting to hear some nasty news….

Then our trusted doc says, “ it’s about your next dose of lymphocytes…..they are arriving” to which we replied “ok cool, when?”.. the doc says “well actually in about 2 hours!...can you stay over night?”…. Who are we to turn down experimental potentially life saving treatment! So we agreed in a heartbeat and Sarah began cancelling all her work arrangements for the next day….But how about a little bit more notice Mr NHS!!...typical

So, Sarah had her scan in the morning and then began her infusion later that day, 71000 cells this time, as opposed to the 14,000,000 from the last infusion, but this was expected, and the egg heads in Sweden were happy with the results.

71,000 Cells

reunited with thier owner!

It got to about 9pm and all was well. We were watching Family Guy sitting on the hospital bed when the nightshift came on and I was fronted up by a 5ft 4” nurse who started screaming at me across the ward because I was on the bed and that my clothes probably had germs from public transport…..Now, viewing her mood, I didn’t feel it was good timing to tell her we drove in and that she herself hadn’t actually changed into her uniform! (she was wearing jeans and a T-shirt, the cheeky cow!)…and oh my god I’m glad she didn’t see me in the hospital on all the other occasions I’ve visited Sarah….Sarah and I practically used to fight for bed space and often visitors would come into the ward to find me lying on the bed and Sarah sitting in the chair!

RESULTS: a week later we arranged to see the prof for the results of the CT scan…this as usual involved a lot of waiting about in an over-crowded room on a hot day which as you can guess, didn’t make it the most fragrant of places….more like a builders arm pit!

We finally got to see the prof who reviewed the CT scan with us and hey presto…Sarah’s liver has 100% grown back! After just 4 months!!! The Radiologist who initially reviewed the scan advised the prof that one lymph node is slightly enlarged by the diaphragm / oesophagus, so the prof said he would raise it at the multi-disciplinary meeting and that they would be keeping a close eye on it. In the meantime, he would not need to see Sarah for 3 months, at which point she will have another scan.

Sarah also enquired about her daily blood thinning injections which the prof said he would review and arrange a meeting with a specialist as he thought there was no real need for them any longer.

So we are treatment free for 3 months! Phew! So we are currently enjoying a lovely rest for all the drama.

DIET: Sarah has developed a craving for radishes, carrots (big time) and raw beetroot, which we later discovered are great for the liver, so can we put down her amazing progress to this? Who knows? She is also very partial to oatcakes and eats them all the time – on their own?!

RECOVERY: Sarah’s mobility has greatly increased, and she’s almost at the stage where she can make her OWN cup of tea!!! The scars are healing a treat, and there’s next to no discomfort
Anyway, signing off

Dave and super woman Sarah

UPDATE 27th July

Just after writing this, Sarah got a call from the hospital on Friday, advising that they wanted to bring her appointment forward from 3 months to next month, and when we enquired, we were advised that her scan had been discussed between the doctors, and that they would like to discuss with Sarah the possibility of removing an enlarged lymph node located in her oesophagus.

So I we will be meeting the doc's soon and I will keep this site posted.

Dave & Sarah

27/07/07 to 16/08/07, Recovery Month 5: The Lymph-node Meeting [Return To Top]

Medical : Today we had a consultation with the Professor. The appointment was brought forward from October because Sarah’s last CT scan in June had shown up an enlarged lymph node just above her abdomen.

Whilst we were gutted to find out our 3 month break from any treatment or consultations was brought to an unwelcome, sudden and early end, we kept our chins up and went along to see the Professor.

Our appointment was for 11:55 this morning, a ridiculously specific time, given that we usually have to wait in the waiting room for at least an hour and a half!

None-the-less, we arrived on time (well…maybe a few minutes late!), to find a hoard of people pouring out of the Liver Out Patients waiting room into the corridor. After sniggering almost to the point of tears about a guy in the queue who was suited and booted, but had ankle swingers up to his knees with bright white socks pulled up to what I can only imagine to be as high as his crouch, we eventually elbowed our way into the waiting room to grab a couple of chairs in the lovely stuffy room.

We kept ourselves entertained for about an hour as our appointment fell more and more behind its allotted time, by beating up badies and watching Family Guy on Sarah’s PSP console she brought along. As usual, we were surrounded by other poor sods who equally looked like they didn’t want to be there and were left to watch the Antiques Road Show on a 15” telly with no sound (thank god quite frankly!)... all while screaming, bored kids ran around.

By the second hour of waiting, entertainment had reached saturation point, as we watched desperate people turning to a cheap smelling coffee machine which dispensed cups the size of thimbles! No one dared leave their seat in fear of missing their long and painfully awaited appointment!

Bordom Starting to set in!

As the 3rd hour of time wasting approached and insanity appeared to be setting in, we heard the godly, welcome sound of Sarah’s name FINALLY being called out.

The Professor explained that a multi-disciplinary committee had discussed Sarah’s enlarged lymph node and had decided to ask her back for follow up because a lymph node located in the chest area above the diaphragm has enlarged by 5mm since the last CT scan in March. This can be of concern, however, the Professor advised that lymph node enlargement can be normal for someone who has just had major surgery, and we agreed that, rather than taking the aggressive approach and opting for surgical removal at this time, the node will be monitored for change. Sarah will, therefore, have another CT scan in October. If the lymph node reduces or returns to a more normal size, nothing will happen, but if it gets any bigger Sarah will be referred to the Cardio-Thoracic team to discuss removal.

The Professor also advised that if the lymph node does get any bigger, further non-surgical treatment may be required, but we were pleased and relieved to hear that this is likely to be another bout of Tumour-inhibitory Lymphocyte Therapy rather than the harsher option of chemotherapy.

Finally, he said that her liver has no signs of disease, which is a really good sign and that although the liver has regenerated, Sarah no longer has a left lobe since it was cut out, but has a very large right lobe instead. (Interesting…amazing….but gross!)

So, our 3 hour wait was for a 10 minute meeting where we were advised that nothing was to happen!.... kinda the same way the last meeting went!.....what a fantastic way to spend a day off!

So we stumbled off home, mentally exhausted from the stress and boredom of the tedious days’ events, yet again filled with the relief that Sarah DOES actually get a bit of time to rest and gradually return life to normality. We promptly booked a couple of tickets to see the film “Borne Ultimatum” and grabbed a nice lunch out.

Sarah Personally: Sarah is back on form, dragging me round every shoe shop she can find. She still gets tired, but we were advised that this is due to the residual effects of chemotherapy and surgery.

She’s starting to go back to the gym, and the cheeky cow can totally out swim me! But then it’s not hard to beat a whale that’s spent a lot of time “beached” and eating Domino’s Pizza! Other than that, she’s in great sprits and has a lovely smile each day.

We hope you enjoyed this thoroughly boring instalment of “The Adventures of Bionic Sarah”

We’ll keep you posted in October.

Ta ta for now,

Dave & Sarah

01/10/07, Monday : Fat Leg Checkup Time [Return To Top]

Medical: This month started with the great news that Sarah no longer has to take blood thinning heparin injections every night!! Fantastic stuff as this was more commonly known as "the bee sting" due to the pain she had to endure each night for over a year!

So, Sarah and I cracked open a mini bottle of pink champagne to celebrate the end of a years' stabbing, bruising and suspected infections / haematomas. Sarah put her alcohol tolerance to the test and was pretty much wasted on half a glass!!

Sarah went for an ultrasound scan and it was confirmed that her right leg is still blocked with a clot up to her stomach. However, it's not all glum news! apart from a small patch along her thigh, some blood is now passing through the deep veins. But due to the blockage, the blood is still being forced to move through the "superficial" veins, which makes her right leg slightly larger than the left! So where most boyfriends have to put up with "Does my bum look big in this?", I ALSO have to contend with "Does my leg look big in this?!" Either way, a wrong answer could land me months of never ending house chores!! The good news, is the clot is stable and the risk of bits breaking off is now very unlikely.

She also managed to fill up her 5 litre capacity sharps bin to the top:

Every time Sarah injected herself she suggested I try one...just to understand what it was like!!

05/10/07, Friday : CT Scan [Return To Top]

Today I took Sarah to King's hospital for her 3-monthly CT scan. Although this was a regular checkup, more specifially this scan was to aid the decisions to be made about the enlarged lumph node near Sarah's oesophagus (see past stories). So, our fingers, legs, eyes, toes and anything else we could think of were crossed that the lymph node had gone down in size so as to avoid any further operations. But the results won't be until next week.....did i mention that I love waiting!?...

Sarah is not crazy about CT scans. 1. because before the scan she has to drink a litre of water and then not go to the toilet for ages (which if you know Sarah is not an easy feat! Not to mention the fact that I make every kind of water running noise or trickling noise I can possible think of!!) and 2. because it means having an injection of contrast dye administered via a catheter in her arm. Poor old Sarah has always had a little troube with this kind of thing as she has quite small little arms and veins and the nurses find it hard to put in a catheter. So, after the scan she emerged pratically covered from head to toe in wounds and plasters! (ok..ok..I exaggerated a bit...it was only 3, but that is 2 too many!)

And then, knowing how great I am with needles and blood, she began to describe in great detail how the nurse jabbed her each time and "Wiggled the needle" (....swoon!)

May the waiting begin!

11/10/07, Thursday 10:40am : Results time! [Return To Top]

Medical : An anxious Dave and Sarah placed themselves in the dreaded Liver Outpatients waiting room where, as usual, the only source of entertainment was daytime drivel TV, or a copy of Heat magazine which was 55 years old and still talking about the same old rubbish...celebrity cellulite! But this time I came prepared and brought along my new media player Sarah got me for my birthday (yes I know I'm spoilt!), packed with tunes and TV shows. We ended up choosing to jig to some music to pass the time.

Then to our utter shock and surprise, at about 10:50, Sarah's name was called out!?!? YES! only 10 minutes of lovely waiting! I was greatly disappointed as I had brought my tent, stove, sleeping bag and everything!

We stepped into a tiny room to be welcomed by about 67 medical students crammed wall to wall, floor to ceiling! All saying "WOW! it's her! it's really her!?! we've heard so much about you" (ok.. .I exaggerated again, there were only 3 med students and the consultant, but with the size of the room, there were practically sitting each others laps! but they were all saying that Sarah appears to be a bit of a celebrity in the liver unit!)

So after fighting off the "WOWs", Sarah signing autographs and posing for photos for avid medical fans (not really!), we sat down with the consultant (who we haven’t met before, but the professor we know was in the operating theatre)

The News : well, it wasn't what we hoped for which was quite crap, the 1 lymph node in question has grown from 44mm to 47mm since the last CT scan, and is now cause for concern, so the grilling of the docs began. Sarah's case will be discussed in the weekly multi disciplinary tumour meeting on the 17th October and we will be advised the day after. Of course, we had lots of questions and the consultant didn't want to speculate too much as he is a liver surgeon and the node is in the cardio-thoracic area. However, he outlined 2 possible actions if the node has to be removed.

1. Key hole surgery: This is the option we are so so hoping for, the procedure will involve general anaesthetic, 3-4 small incisions being made into Sarah’s chest between her ribs, the scarring is minimal, and the recovery time will be about 1-2 days in hospital plus a few days at home:

2. If the lymph node is not accessible via keyhole surgery, a more major incision would have to be made, probably from the side of her chest, down around the rib cage, and back up her chest (from what we could make out from the description given at the time):

This will cause more considerable scarring, be a larger operation and the recovery time extends to about 10+ days in hospital plus a few weeks at home and will involve a deal of discomfort...not ideal!....I mean the food there is crap!.....oh, not to mention Sarah having to go though all that again (and me having to tolerate Dominoes Pizza for another 2 weeks!)

"Facts": The consultant advised that there is no way to tell if the lymph node is cancerous until after removal, but he did tell us that cancers can spread though the lymph nodes. Each lymph node does a great job of filtering out and attacking cancerous cells as it sees them as foreign cells, but in some cases, if the lymph node is not able to beat the cancerous cells and it may be overcome....pretty interesting enh?! As the node is getting bigger, it implies that it may be infected.

Apparently there is a test called a PET test which is where they inject some dye (pin cushion time!!) which localises around glucose, so as tumours cells divide faster than normal cells, they use more glucose, and therefore the dye concentrates around the tumour and can be picked up by the PET scan. (my god I'm full of facts today!)

So I put forward the question "Some cancer diets suggest that Cancer feeds off sugar, and as glucose is sugar, should she stop eating sweets" the answer was that it probably wouldn’t make much difference.....but Sarah's still on a sugar ban ....apart from the lovely cakes she been baking me recently!

All of the above was speculation on the consultant’s part, he was giving us possible actions, but will all be reviewed in the meeting with all the relevant professionals involved

On the bright side of things, they also checked Sarah's liver from the scan and found NO RESIDUAL TUMOUR OR FURTHER GROWTHS in the liver or organs around it which is obviously great news, so the whole removal of the lymph node would more be a case of being better safe than sorry.

After the meeting, Sarah and I left feeling disappointed and gutted that the scan didn’t amount to nothing, but hey, we've coped with a lot worse, and we both know this thing wont beat either of us, so as much of a pain in the arse if is after having only 6 months off from one treatment or another, it's chin up, push forward! After all - she's a proper GI Jane!!:

Notice I'm the one brandishing the big gun! ;-) (and dodgy beard)....although I'm slightly concerned Sarah has a gun at all!

Then Sarah had to give yet more blood (I’m sure they're just selling her blood to vampires!) and while we were waiting, we were plonked down next to a delightful family of dramatics who were out in force with their old mother. When the daughter and mother came out to the busy waiting room, the daughter leant discretely over to the husband's ear as if to whisper some news, then seemingly at the top of her voice, shouted "THEY THINK SHE'S GOT INTERNAL BLEEDING!.... I HAD TO ASK THE QUESTION, SHE DIDN'T ASK ANYTHING...IF I HADN'T ASKED....WELL?!?!", so the poor old woman’s business was broadcasted to the entire room.....lovely!, kind of reminded of these characters from Harry Enfield:

...yes...The Slobs

Personally : Sarah is more or less completely recovered from her liver operation, she’s back at work 5 days a week which is great, and her company has impressed me day by day with how they have treated her and pretty much paused her career progress in her absence, and let her pick it up from where she left off (about 3 miles down the road!), and she's doing very well as usual.

We also both took part in a 4 mile sponsored walk for Diabetes around Greenwich park a few weeks back, completing it in about 55 minutes, which is a good accomplishment for...me...dragging my chubby butt up and down hills trying to keep up with Sarah!... I think the only thing that kept me going was the thought of the BBQ that greeted us at the end!!

It was 10:30 in the morning and Sarah was already having a beer!....(joke!)

Sarah also has joined a group called "Voices In Partnership" which is a group dedicated to improving the care and treatment given to cancer patient, and they recently had an open day where other such charity organisations got together stands of information for the public. Sarah was a key speaker on the presentation about the group. I was there, along with the Greenwich Deputy Mayor, front row centre...but got called an IT geek by some old guy presenting with Sarah... I’m sure I have Sarah to thank for that one! As usual, she’s creating ripples in that community with her excellent presentation skills and her gorgeous smile has 70 year old men falling head over heels for her!.....what an "old man" magnet I've got! ;-)

Lastly, Sarah seems to be attracting some global attention with her Lymphocyte therapy, and has received a few mails from people with either FHC or people who know someone with FHC. Thank you all so much as each mail has touched us both and Sarah will do her best to get back to you and answer your questions, but we haven't forgotten you, just bear with us.

So next week will be the date for the next lot of news, until then, thanks for reading...bye!

Dave & Sarah

18/10/07, Thursday : What's Going On? [Return To Top]

Medical: So a couple of weeks ago we left you with a bit of a cliff-hanger. Sarah was awaiting a call from the doctor to advise us of what procedure she is going to have - keyhole or something quite larger – based on discussions at a multi-disciplinary meeting with the relevant experts present.

Thursday 18th Oct

In true NHS style, this meeting amounted to the decision that the lymph node should be removed, that Sarah was to be referred to the cardio-thoracic team, and would be contacted with a date and time for a consultation ......hang on......didn’t we work that out 2 weeks ago?!!? and wasn’t the point of the meeting to BRING the experts required TO the meeting to move it all forward,... kinda feels like that film Groundhog day doesn’t it!?!

So anyway, 1 week “snailed” past and Sarah’s patience wore thin, so on the morning of Friday (26th) she rang the doctor. He told her he was in “Scrubs” (not the TV programme!) and just about to go into theatre, but said:

"I’ve spoken to the cardio-thoracic surgeon and you’re having it done on Tuesday!...Someone will call you today to discuss, got to go, bye!!"

With jaw dropped, Sarah called me at work to let me know, not being able to do anything but laugh at the madness of the situation and organisation! Yet again, we were left still guessing HOW it is going to be done...wonderful…..did I mention that I love the NHS?!

Talk about insane notice!

Sarah then spoke to the cardio-thoracic Sectary who confirmed that she would NOT be having the operation on the coming Tuesday, but instead would simply be having a consultation with the surgeon the following Monday….phew! what a roller coaster!...up and down…..up and down…..up and down…...

29/10/07, Monday : What's Going On? II [Return To Top]

Sarah and I popped along to the consultation where the surgeon said he was unable to find the enlarged lymph node on the CT scan, as the scan had been done for the liver department using their “setup” and that he normally had a more specific setup for the heart and chest area. (I did try to point out he had it upside down, but he wasn’t having any of it!) So he advised us he would talk to the radiologists and call Sarah with his findings.

It was getting late on in the day by now, and I promise you all that the thought of our time being wasted didn’t even pass my mind………YEAH RIGHT!!! Anyway, Sarah went off to haematology to discuss her blood clots and to give yet more bloods for to the vampire bank …but upon arrival, the doctor was shocked to meet Sarah, saying “I was expecting someone much older!” to which other staff rolled their eyes in disbelief that someone had actually said that out loud!

Over in haematology, Sarah’s mobile signal was pretty much dead, so while she amazed the doctors with her unexpected youthful looks, classic sod’s law kicked in and the surgeon called!! So she was ecstatic to see she had a voicemail saying along the lines of:

"It is highly unlikely that we will be able to operate using keyhole surgery, therefore we will probably have to open the chest, but we will talk about this in more detail tomorrow…"

At which point Sarah’s words were "Oh my god! What does THAT mean?"

So with the words “Open Chest” ringing around her head, Sarah tried to get hold of the surgeon, which proved to be tricky because he kept having to go into emergency surgery. She finally spoke to him on Wednesday (31st) and found out that the node is quite big - about 2 inches long, it definitely shouldn’t be there and therefore does need to come out. It is located in-between the aorta, the vena cava and the oesophagus and is tucked behind the heart. Apparently it will be quite difficult to get to via keyhole surgery because of its size and location.

The surgeon will, however, try to remove the node via keyhole surgery in the first instance. If it does not look possible, he will have to perform open surgery (i.e. open the chest). This means an incision approx 6 inches long on her back, below the shoulder blade / about 5 or 6 inches below the arm pit.

The whole procedure should only take about 1.5 hours and if it can be removed via keyhole, she can come out of hospital the following day(!). If keyhole surgery is not possible, she has to stay until the weekend and will need 1 to 2 weeks at home to recover.

It was agreed that Sarah will have the operation on Tuesday 6th November.

To be honest, we were both relieved about it all as we envisioned a much, much worse incision….that teaches us for reading everything off of the internet!...scary place!

Sarah then, in true form, made the most crucial enquiry of all... She advised that she had just purchased a lovely semi-backless dress for a wedding and expressed concern that a nasty scar would draw attention away from her shoes also newly purchased – should she take the dress back??! ! The considerate doctor replied "bring the dress in, put it on and we'll see if we can work around it" (!!!!!) which was quickly followed up by an excited comment from his sectary in the background saying "And bring in the shoes!"

Only Sarah can turn a scar in to a fashion consideration!

So that’s where we are, so mark Tuesday in your diary and all your positive vibes and thoughts are required. The operation will only about an hour and a half, but the REAL gruelling task will be to eat hospital sludge for a week again!

Remember this lovely stuff!

I’ll do my best to keep you all updated on her recovery.

Cheers

Dave & Sarah

06/11/07, Tuesday : Operation Lymphnode!

Firstly we would just like to thank everyone for all the lovely text messages, mails and calls wishing Sarah good luck for her operation today. They were all really encouraging and helps Sarah though this nerve racking time.

Secondly apologies if I have not replied to a direct text or mail giving updates on Sarah’s well being, but there so many of you that time is too limited in the evenings so but I’m going to stick to updating this site each night for the first few days, and I’ll drop a blanket text to let you know this update is here.

Sarah was advised at her consultation on Monday that she would have to be nil-by-mouth from midnight in preparation for the operation.

November 6th – 6AM

Well, the day kicked off to a killer early start at 6am, which wouldn’t of been so bad if Sarah and I had got to bed before 2:00am! Sarah was subjected to a bombardment of comments such as:

"Would u like a cup of tea darling?... Oh sorry! Ur not allowed! (Snigger!)"

Or

"would u like a sandwich darling?... Oh sorry! Ur not allowed! (Snigger!)"

Or

"Hmmmmm this bacon sandwich is lovely... Darling, would you like..... oh sorry! Ur not allowed! (Snigger!)"

We arrived at Kings College Hospital at 7.30am to check in; Sarah and I were promptly told to wait in the visitor room with Sarah’s parents while they sorted out the room. An hour past before we finally settled in.

We were soon subjected to a number of Spanish inquisitions by a flurry of nurses and doctors all seem to be clueless as to why Sarah was there and all asking the same questions like, "when did u last drink? When did u last eat? Are you on any drugs? Blah blah" all while Starting to jap Sarah like a pin cusion!

Let the Games Begin!

Amongst the questions came comments like “So its 8.30 and you've just got hear for an Op at 9?!” which was promptly corrected by Sarah’s reply of “Erm..No!, we’ve been hear since 7.30!”

Before we knew it, Sarah’s operation slot had arrived, only for the staff to then realise (thanks to Sarah) that she had NOT signed any consent forms for the operation, hadn't any bloods taken, or had any risks outlined to her! So needless to say, due to the blunders, Sarah missed her slot, and we were generously given another to hours to sweat about it. (Wonderful!) But the in given time, it gave the nurses time to swiftly correct their the flaws in the master plan. Eventually a bunch of friendly docs passed by to explain it all to her, giving us great confidence that this was a straight forward procedure. Also each nurse who read Sarah’s file couldn’t believe all that she had been though so much, and said that this op would be a walk in the park in comparison!...kool!....my girlfriend is hard!....(does that make me a big girls blouse!?!?)

So the 2 hours soon passed and the and just as the porters arrive to take Sarah down about to the theatre, we found out that part off the procedure was to collapse 1 of Sarah’s lungs to get to the area behing the heat and operate! Scary stuff!! But again…some how normal (in a Frankenstein kind of way!). So as Sarah was wheeled down, her nerves started to show in the form of shivers and a slightly worried expression on her face, but still her courageous smile beamed though as she chatted to us all, plus we were able to comfort her al the way to theatre, where at 11:15 I was left with a lump in my throat when we had to leave her.

We were told the operation would take about an hour and a half, and require a further 2 hours recovery time. This left me to entertain the in-laws for 4 hours, which is pretty much like visiting an old-peoples home! but with the added difficulty of diverting the conversation AWAY from marriage and weddings! (Only kidding Alan & Christine, please don’t revoke my Christmas present for that one! ;-) )

We past the hours with tea and cakes, followed by head nodding-inchair-sleeping competitions, which Christine won by completing a 360o neck spin while dropping into deep sleep!

About 3:45pm we started to wear out the corridor tiles, so we managed to break into the recovery area where we found a very dopey and extremely tired Sarah, but sitting up and looking perky considering. (ok, when I say "break in", I actually mean "followed a nurse in", I dont mean with a crow bar or anything!)

Medical : We heard from Sarah that th doctors said that keyhole was attempted but they ended up doing the full Thoracotomy operation, so she has a large scar on he back, but not quite as bad as we anticipated, but the “mass” had been removed and sent off to have a biopsy done on it. (Sarah was pretty high on drugs when she was told all this, but that gives us no reason to doubt the words of the surgeon who apparently looked like a giant purple panda!!)

THATS HIM!!!

And the Scar :

What we were expecting		What actually happened

We stayed with Sarah who was in no pain at the time, but one second you could be having a chat with her, then next second, her head would hit the pillow and she was out for the count in snooze land! Quite funny to watch! (either that or my conversation was REALLY boring!). Also Sarah has this bucket of oze coming from out of her side! (puke!)

At 6:00pm Sarah was moved down to a high dependency ward where is where she will remain until maybe tomorrow when her epidural comes out. Not great as the entire ward is full of old noisy men. I was chucked out about 8:00 at the end of visiting hours.

That’s it for today, I’ll update again tomorrow

Cheers for reading

A very tired Dave

07/11/07, Wednesday : Recovery Day 1

Sarah didn’t get much sleep Tuesday night, what with the beeps and noises all around, and some time in the morning she was visited by the docs who ok’ed it for her to have all her tubes removed at Sarah’s great relief.

Sarah seemed in great form and very chirpy, and totally taking the piss by walking about everywhere in front of all the other bed ridden patients, but despite her discomforts, she was looking a great as ever! One nurse even said she made the hospital gown look glamorous!

Although the tubes were removed, the drain in particular was quite gross. Sarah said that when it was pulled out, “it felt like water rushing on to the sea shore, then dragging all the stones and sand along as it went back out again”…I didn’t quite manage to imaging what is was like having a beach in my side…but I liked the descriptive explanation!

When they removed the tubes, Sarah experienced a rippling pain in her chest, which prompted the nurses to take her to have an emergency x-ray (which took an hour!). The x-ray showed that Sarah’s right lung had not fully inflated, and there was a pocket of air in her chest. The surgeon said that if the volume of air gets bigger and her lung collapses a bit more, they will have to put a drain in her chest to let the air out. But they didn’t seem to worried about it, so we’re assuming that its one of those things that can be easily handled.

This air is a little painful for Sarah, making it hard for her to take deep breaths, but because she’s fit and healthy, she is getting 100% of all her required oxygen from the other lung, so theres no worries there. But this meant Sarah had to stay in the high dependency ward another night and the private room her aside for her was given away! Plus if that hadn't of happened, the surgeon said she could of been home by tomorrow! gutted!

Sarah also had physio today, where she was given exercises for strengthen her right arm (as the scar is on the right of her back), and again was praised for her impressive recovery.

We sneaked a peak at the doctors notes to read a lovely note that there was no obvious sign of anything else i.e. no other tumours other than the node which was great news and always great to know.

Sarah is due to go to the liver outpatients tomorrow. So she began making plans as to what she was going to wear and when to wash her hair… her choice of cloths was some what limited due to my good self bringing in ALL the wrong things she didn’t asked for! DOH! She sent me a list via her dad and even though she put all the pyjamas she wanted in a box before she left, but some how I managed to find all the inappropriate ones at the bottom, and only bring those ones in! I even brought her in a little range of inappropriate pyjamas!! How great am I! (what a muppet!)….the only thing I didn’t get wrong was the carrots! (least I got that right!?...i’d be worried if I got that wrong too!)

I too can do the fassion thing...with a hat also know as a poo/wee/sick bowl....unused of course!

So Sarah is going to be subject to another night in a mainly old mans ward, where she told me that she saw a lot of old wrinkly bottoms hanging out the back of gowns….so she has chosen to take advantage of her bad eye sight and leave her glasses firmly off!

That’s about it today, not much to tell. The whole lung thing worried me a bit, but Sarah commended the nurses on the ward saying they were very kind and attentive.

Cliff Hanger :

Here’s some lettuce I spotted on the floor, so I took a pic! we'll see if its there tomorrow! (god i hope not!)

Short and sweet today.

See ya'll tomorrow!

Dave

08/11/07, Thursday : Recovery Leap Day II

This morning started well with a small text from Sarah saying "all ok, slept v well" which she aparently sent whilst in the toilet. It was great news to hear as she had such a tough night before hand. However, I had this image of her smuggling a contraband phone into the loo, with the risk of getting a cavity search by a heavy moustached Ghanaian customs officer!

So I arrived to work today completely cream crackered, to have my Boss and my Bosses Boss tell me to finish work early, get some rest and go and see Sarah! how cool is that! so a big thanks to Martin and Scott! Top blokes and they're really looking out for me.

Today Sarah was visited by her "Liver Surgeon" who popped down to see her, and they said they had spoken to her chest surgeon, they said that he was pleased with the results, and they heard about Sarah’s custom made incision designed to fit around the dress she bought for a wedding (see update Monday 29th Oct Afternoon) has made her infamous though out the hospital and everyone was talking about it.

Sarah then passed the rest of the morning reading and eyeing up an old man's……… (guess!)……..Puzzle book!! (what else?!). Then Sarah’s mother arrived in the early afternoon followed by my amazing self and mother in tow.

Sarah & Mum spell checking what been writing on this site, and pointing out all my typos!

My mum took me to the hospital where we went to where we left Sarah, only to find a blank space!! So with slight panicked expression on my face I turned to a nurse who cackled saying "hahaha we've sent her home! hahaha". Surely not?! But then I found that she had finally been given her own private room away from the men’s ward of wrinkly bums dragging around (which I'm sure she was disappointed about!)

Sarah's looking as great as ever, sitting up and appears to be 110%. She’s able to get out of her bed quite easily without too much discomfort, and walking about as if all that’s happened is that she’s stubbed her toe! She’s also cracking on with her physio, and by the sounds of it, taking it to the next level and not being too far off doing star jumps off the side of her bed!!

Sarah popped down for an X-ray and depending on the results, she may be back at home tomorrow!!! which I have my fingers crossed about as there’s a massive pile of washing up in the kitchen that just wont wash itself up no matter how much I ignore it!

Sarah also had to endure another day of NHS cuisine with macaroni and cheese followed by apple crumble and custard :

Bleached White Macaroni and Cheese	Bright yellow/brown Apple Crumble (Yum!)

Compliments to the chef/microwave...

And yes these are the REAL colours of the food, I promise that I have not changed the colour in any of the pictures, all the food really looked like someone’s puke!

Now I know a number of you have been trying to text and call Sarah on her mobile, but just to recap, she’s not allowed to switch it on, and being the ultimate compliance officer of the universe – shes following the rules to the T (apart from the texts she gets to send me from the loo in the morning.

Cliff Hanger Suspense

Yes yes, the moment you have all been waiting for....the "lettuce on the floor by her bed" results?!?!!? well, unfortunately this will remain one of life's great mysteries becasue Sarah was moved to her own room, so without crawling around the feet of another patient and family and freaking them out shouting

"IM LOOKING FOR SOME LETTUCE!"

There’s no way I can see it to find out! sorry ladies and gentlemen. Although I was tempted to hide this tomato on the floor in Sarah's room to see if it was cleaned up :

Close Call for this little one!

But I decided it wasn’t worth the risk on Sarah and future patients, and it was unfair to the cleaners....but damn tempting!

Anyway, thanks again for reading.

ta ta

Dave

09/11/07, Friday : Recovery Day Fantastic! III

Sarah didn’t sleep well last night because she was suffering quite a bit of pain, but help was soon at hand in the form of opiate pain killers, so she soon passed out with a gooey smile on her face.

In the Morning, the doctors did their rounds and told Sarah they were going to look at her x-ray from yesterday and let her know the results later in the day. They also advised her to take a walk to down the corridor to exercise her leg, and to inflate her lung…nice! That makes Sarah sound like a blow up doll!

Then Sarah spent the rest of the morning leisurely reading her pile of trailer trash magazines, and testing her brain on sudoku. She took her walk as advised down the corridor where she switched on her phone and was flooded with nice messages and well wishes, and managed to respond to a couple of them (not mine though! Cheeky cow! ;-) )

Sarah’s “brick in the face” “not so subtle” hints to her family for presents were extremely well noted by her sister Emma who sent her some lovely gifts she was quite chuffed about. (My gift to her was me! Generally being great all the time!.....but apparently I still owe her something better!?!)

In the afternoon the surgeon came by and said that she may have to stay another night! to which Sarah replied “cant I go home?” using her best “puss in boots” eyes :

To which he crumbled like a cookie and replied “well….if you feel up to it, you can go home” but as the x-ray showed that she still has a small Pneumothorax (partially collapsed lung….yes I finally found the official word!), if she has the slightest issue, she is to return to the ward immediately! The surgeon said it should get better with time and that it would resolve itself - no need for a chest drain - phew!

So with a leap and a skip of joy (more like a limp and a screech of joy!) Sarah packed up her stuff and did a “ninja vanish” from the ward. At about 5pm Sarah arrived….

BACK HOME!

Sarah was pampered from the moment she steped though the front door, and even had a pedicure from my mum (and plenty of hugs and prodding all over her scar where I keep forgetting it's there! Opps!....I just can't help it, I’m drawn to it every time! ;-)

Personally: Sarah is aching and is on quite a lot of drugs, and she described the pain of the Pneumothorax as like a constant bruised feeling with pressure on her right lung and down her back, even after pain killers (I’ve been told bear hugs are out of the question!) – but she said she’s got used to it in a weird way, but deep breathing is quite hard. As for the scar, this hurts a bit but Sarah has been doing her physio exercises and the physio lady was very pleased with Sarah’s progress.

Overall, Sarah’s feeling OK, just a bit tired, and really happy to be home. She also wanted me to mention that the doctors and nurses on the ward were really good and took excellent care of her. Hats off and a big thanks for looking after my girl.

Big Sister Emma’s Quote: Who else goes in for a pretty major op on a Tuesday, and is out and back home by Friday!?!?!

MEDICAL MARVEL SARAH!!

So sorry to disappoint the avid daily readers out there, but I’ll be cutting back on the updates once again, and only updating the site with major news of tests and results. So if you haven’t signed up for the updates, don’t be shy – you’re all welcome…..unless you're going to mail me back with a list of corrections and typos to the site like my mother did once?! ;-)

Her next hospital check up is due in the liver unit in 6 weeks when we are expecting to get the pathology report on the removed lymph node.

Ta ta for now and once again thanks for reading,

Dave & Sarah

P.S. For those of you who are missing a gory picture, this is the bruise Sarah has from the arterial line which was inserted during her operation to monitor her blood pressure and blood gasses:

24/11/07 - 05/12/07 : Post Op Recovery Status

Sarah went to see the Cardio Thoracic surgeon to follow up on her right thoracotomy performed on 6th November. (That’s “2nd big fat operation” to you and me!) - here's a Pic of her scar:

Sarah told the surgeon that she was feeling mighty fine and was now off all pain killers, to which the surgeon picked up his jaw from the floor and replied with a shocked “Wow, oh! Ok”. Clearly he hadn’t encountered a GI Jane Sarah before!

The surgeon then went though the pathology report (the biopsy results on the removed lymph node), which confirmed that:

• The node was full of metastasised fibrolamellar tumour; and,
• It was likely to have been an incomplete excision (i.e. not completely removed) because the tumour cells reached right to the edge of the excised mass.

Despite that, the surgeon himself believes that he did get it all because of the way that it looked and the fact that it came out in a ‘sack’ (lovely!). In any event, he was unable to remove any more than he did because of the location of the node (right next to the aorta, oesophagus, and the vena cava…some other body parts!) and because it was not within an organ, such as the liver, whereby a margin can be removed all around the tumour.

There you have it, the Oesophagus, Vena Cava and the Aorta.... to you, me and everyone else who's not a doctor, that's otherwise known as a big bunch of important veins & tubes! (swoon!)

Overall, it was not good news; however, Sarah will be discussing the implications in more detail with her Liver team.

To cheer her up, I took Sarah for dinner where she practiced her skill of eating / sampling all my food as well as her own!

24/11/07 - 05/12/07 : Post Op Recovery Status

Sarah had a flurry of visitors and rested while watching DVDs. She’s still quite achy and stiff and said she’d like to be able to jump about a bit and dance and to do ballet again….so I will be investing in some lead boots until she recovers fully!

Sarah’s been having reflexology, and tried out a new vertical reflexology (courtesy of my Mum), which she said was “bloody painful stuff” when my mum was pushing her foot and hand at the same time. Funnily enough though the part of her hand and foot that was painful corresponded to the area on her body where the incision was made. Maybe it isn’t just mumbo-jumbo after all. But that still doesn’t mean that you can touch my feet mum!

06/12/07, Thursday 11:40am : Liver Outpatient Department

We attended our follow up visit to the Liver Outpatient Department, where we had mentally prepared ourselves to loose the day in the waiting room. I wondered casually around looking for supplies in the shop while Sarah sat in the waiting room, then popped to the coffee shop and picked us up a couple of drinks.

As I reached the corridor of the Liver Outpatient Unit, I could see in the distance, a flustered Sarah hurrying me down the corridor and calling me saying

“Dave, Dave, quick, quick! I’ve been called in!”

So I hauled ass down to the consultation room spilling lovely hot coffee over my hands and generally running like a Thunderbird on strings trying to keep the coffees from spilling on the floor by keeping my arms as still as possible and my legs running like a loon. When I got there I had a slight feeling of disappointment that I wouldn’t get to watch all the programmes I had brought on my media player!!

Me, Running like a Thunderbird....don't ask me what the puppet behind me is meant to be doing! :-s

We sat down with a member of the Professor’s team who said he had heard the pathology results weren’t great.

We asked why they hadn’t seen the enlarged node before, given that it was fairly large. He said that everything had been scanned and it hadn’t shown up before, so basically, it had appeared as a secondary tumour AFTER the removal of the primary tumour in the liver but that it had probably already spread to the lymph node BEFORE that removal and just didn’t look abnormal at the time. He said we should be optimistic that there aren’t any other infected nodes because they too would be enlarged by now.

Sarah then showed him her lovely weeping wound at the end of her new scar and the Doc explained that it was where the stitching knot was, and that the body was trying to push it out because it sees it as a foreign object. He said that it could be sorted out as a day case if it doesn’t clear up on its own within a couple of weeks.

Next entered the Professor himself because he wanted to see how Sarah was getting on.

The Professor suggested that rather than give Sarah any post-op chemo or further lymphocytes, it would be better to give her body a break and keep a close eye on her. However, the concern now is the frequency of her CT scans – he does not want her to have problems in the future (i.e. another type of cancer) because of an accumulation of radiation. So, the action plan is to do a baseline scan in February 2008, and then if all looks fine to do 6 monthly CT scans to keep an eye on her.

Sarah expressed to the Professor, that it feels like there is no end point to the treatment, to which he replied that there is no end point right now due to the high risk of recurrence and that Sarah’s main objective is to stay alive!!!

Even if Sarah doesn’t get a recurrence, the Professor said he will be seeing her for at least 10 years and that he believed that during that time, immunology will have developed and they will be able to understand things a lot better. He said the lymphocyte treatment is still in the early stages of development and only in a few years time will they know the impact it has on various patients and tumours

The other Doc advised Sarah that the best course of action was to stay really healthy and fit and keep her immune system as high as possible.

01/01/08 : 2008 New Year Update

Sarah has spent the last few months getting back to work gradually, she’s now on 4 days a week, starting at 10am. She’s enjoying being back to work, but has a new found perspective of the bigger picture.

We had a very busy Christmas and New Year, doing our best to catch up with everyone and their dog! Sarah got a Play Station with SingStar, and has been singing her heart out though the New Year so far, and also has become an expert at Guitar Hero!

The liver op scar hasn’t changed or improved much over the last 6 months, if anything, it stretched / widened a bit, so she invested in a silicone strip from the US (www.makemeheal.com) which sticks over her scar and is meant to help the healing process if used daily for 3-6 months.

Here’s the latest pic of the liver scar

Before :

Now :

As you might be able to see, there’s a noticeable improvement in the centre of the scar which has turned an almost normal skin tone, leaving just the outer edge red. She is going to get one for the other scar too.

08/01/08, Tuesday : Haematology

Towards the end of last year, Sarah had some blood tests to identify whether she has any blood clotting factors which may have contributed to the massive DVT and Pulmonary Embolisms suffered in 2006.

Here's some pictures of the fat leg for anyone who missed it!

Today she went to the Haematology Outpatients Department to get the results. It turns out that in addition to having an extremely rare form of cancer, she also has a very rare blood disorder – a free protein S deficiency. The difference with the blood deficiency is that it is a hereditary condition – so we can blame one of her parents!! I personally had great fun helping Sarah break the news to the in-law (wanna-be’s), and teased them in every which way I could!

The deficiency means that she is much more likely to get a blood clot if a trigger is present. Triggers include cancer, surgery and chemotherapy – hmm… I wonder if any of those apply to Sarah?? As a result, she has been advised to go on long term anti-coagulation (and not that doesn’t mean “working together with the enemy”, its blood thining!) until she is no longer considered to be at risk of having a trigger. She therefore has to go on Warfarin and, initially, the dreaded heparin injections too and will need regular blood tests to monitor her blood. Which is great because I had so much holiday oozing out of my ears I didn’t know what to do with it anyway, oh well! Yet more time in the hospital – whoopee!

Sarah asked if she could have the clot fished out with a wire, as seen on one of our favourite TV shows, House, but the doctor said that is a very risky procedure which often is unsuccessful – unless you are the character Greg House. Oh well, if you don’t ask, you don’t get.

19/02/08, Tuesday : CT Scan

Sarah’s CT scan was the usual. We both had the day off as Sarah was feeling a bit nervous about the whole thing. As usual, there were problems with finding a vein for the contrast dye – but fourth time lucky, and Sarah doing a good impression of swiss cheese, they finally found one!!

Nothing much more to report here, it's just all down to March 6th now when we get the results.....gulp!

06/03/08, Thursday 10:40am : Remission Girl?

Today Sarah found out the results from her last CT scan. Strangely we both though it would be a fantastic idea to stay up late watching TV the night before, so we started the day off extra tired! Wonderful!

We decided to drive to the hospital and arrived about 9:30 so we could get Sarah’s blood tests out of the way before the results.

10:40 soon rolled round and we were in our favourite hang-out spot – the Liver Outpatient waiting room with good old Jeremy Kyle trailer trash TV blaring out and magazines of celebrity corn flab gossip from 4 years ago drizzled round the room.

We both sat at the edge of our seats waiting for Sarah’s name to be called. We decided to watch an episode of “Peep Show” to take our minds off it all, which managed to squeeze out a few smiles from Sarah.

Then before we knew it, Sarah’s name was being called….but by a doctor we hadn’t encountered before…. We dubiously entered the room and sat down thinking “who the heck is this guy!?”, the doctor then introduced himself as a member of our trusted professor’s team.

Then his first question was….

”so you have FHC, have you had an operation yet?”

Frowns started to rise as Sarah took a deep breath and started to recite her entire 2 year ordeal blow by blow to get yet another doctor up to speed. (sigh)

The Doc finally turned to his PC to review the results, then casually said:

“nope, nothing found in your scan”

….Sarah and I didn’t know whether to dare smile or not?!! Was that it? Was that the results we had been waiting and hoping for?! He then repeated himself,

“nope, no abnormalities reported in your scan”

at which point I felt like the world’s biggest weight had been gently lifted from my shoulders, leaving me in a big pile of relaxed mush in my seat! Sarah’s smile almost split her head open!!…I didn’t even know the girl had so many teeth!!

The doctor then popped out of the room to see the Prof, and came back saying “the professor wishes to see you in the other room” so two shiny happy people holding hands floated off to see the professor.

There we had the same news reiterated to us but in a much more direct manor, the professor advised that there are no measurable abnormalities and this means Sarah can go on a monitoring program of every 6 months going forward!

Sarah asked the question that she has for a long time now, been desperate to ask...what is her status?

The professor replied “You are now effectively in remission”

Two happy explosions were silently contained as we smiled our brains out to the reply, this was the news we needed to hear, not only does Sarah have no new growths to worry about, but she is now considered to be in remission and can get back to leading a relatively normal life again (well come on... she does live with me after all!...how normal can life be in that situation!)

The professor said he is going to talk to the relevant people about how frequently would be safe for Sarah to have CT scans (as each scan apparently gives you 12 years worth of radiation!) and he will also look into the possibility of MR scans which are less harmful that the CT scans, but he will have to check that this can provide adequate details. He then booked Sarah in for a follow up in mid September this year!

We also asked if the good results were to do with the lymphocyte treatment Sarah had. Apparently due to there being no conclusive evidence, it is impossible to tell, but we like to think that this aided Sarah in her battle.

And the last bit of good news we had was that Sarah will be having her Chemo port taken out! No longer will she be tackled down by shop security guards when passing though the barriers, or beep though the airport gates! – farewell port!

And as you can see, her hair pouring out of her head since the chemo!

We waved our hippy floaty good byes and both toddled off and found our selves both welling up with tears of pure happiness and relief as we skipped down the corridor and though the park to the car….even the fact that a b***stard traffic warden had given me a ticket for having my car wheels 1” on a very low curb could not break our happy relaxed moods – we were on cloud 9.

COME ON!! It's hardly that bad! I'm not even blocking anything!

So we plan to keep eating well, as much veg as we can lay our hands on, Dominos will take a knock in income, and we’ll be pooing fruit smoothies for months! (yummy!), but we plan to keep on top of Sarah’s health.

Breaking News: Domino's Pizza shares plummet!

It’s Sarah’s birthday on the 14th March, and I’ve bought her an electric guitar, as inspired by Guitar Heroes! She picked it out herself, so all I’ve had for the last week or so is “WHEN AM I GOING TO GET TO PLAY MY GUITAR!!” and she’s been buying self-learning guitar books from every shop we attempt to pass!

At the rate in which she’s getting excited, I’m either gonna break and give it to her early, or I'm going to have to hammer some string on to a wooden plank so she can at least pretend to practice!!!

So if there’s any further news, then here’s where to find it, and we’ll e-mail all the update subscribers if there are any updates, else check out the site in September.

And lastly, as always, thank you so much to all for lovely cards and e-mails that have been sent over the months.

Cheers

Dave & Sarah

02/04/08, Wednesday : The Port's Days Are Numbered!

First of all, again, apologies, this is another massive colletion of updates, and I’ve found it difficult to find the time to go through them and write them up before the next update comes along! So it’s a bit of a rollercoaster update, and a blimmin’ long one at that!. Happy reading!

Something that Sarah has been waiting for; next Wednesday at 13:00 Sarah will be having her chemo port taken out! No longer will she be at risk of having a cavity search when passing though airport security!

It’s a very minor operation requiring sedation and local anaesthetic, and far from as tricky as having it put in…kinda like a cut and pull job I guess!, but Sarah has the added complication of being on blood thinners: warfarin and heparin (yes the injections are back!)

Sarah’s being held back from working 5 full days per week down to 4 by HR and occupational health (good for them I say!), but she raring to go and back to work kicking a*s, (far too soon if you ask me! but I can’t ignore the fact that her workplace has looked after her and paused her career ready for her to pick back up….just seems it's now in fast forward to me! But I know I’m being over protective).

We’re also in the long and drawn out process of buying our first 2 bedroom castle! So life’s starting to get back on track for Sarah, and she’s firing from all cylinders.

09/04/08 Wednesday : Chemo Port Operation day

A very chilled out Sarah approached today greatly looking forward to her port being removed. She had to return to the private hospital in London Bridge as this is where it was first inserted, so we were upgraded from sharing Jeremy Kyle with 50 other sweaty patients, to having none less that Jerry Springer in our own room!! (wow factor meter was off the scale!) (and no I don’t mean they brought the in-bred fighting hill-billies into our very room for a personal freak show, they just had cable TV in there!)

I booked a half day off work and went in ultra early (killer!) so I could get out and see Sarah before she went under the “slice and dice!”.

I arrived about 12:00 and Sarah was just having a few blood tests before she went in. I was banned from eating anything as Sarah was nil by mouth (yes I got the “if I have to suffer, so do you!” treatment ;-) …..nothing a cheeky, sly drive thru couldn’t sort out!)

2 hours whisked by, and we began to worry about Sarah’s test results as it was only meant to take 10 or so minutes.

Then a Nurse came in and said,

“erm yes, about your results, they are showing very high values on your liver function. We can't remove the port today and you will need to make an appointment with your consultant”

……yes….that was it!

One of the extremely high values was Bilirubin (an indication of Jaundice / yellowing of the skin), the results also helped explain why Sarah’s skin has been feeling itchy all over for the last week or so. The only problem is that I’ve always said Sarah was yellow like a Simpson, so it was hard to tell if Sarah was actually Jaundiced. But as we had a slight confirmation, I promised to buy her a tall blue wig and call her Marge.

So we left a little bewildered, concerned, gutted and disappointed….all at the same time!. What did this all mean? Is the cancer back? What was going on?

We made a B line to HQ (a.k.a the dramatic word for home) where we contacted all the docs to initiate appointments and procedures based on this new info.

We called the Professor's P.A. to arrange an urgent appointment, only to be told by his main P.A. he was not around, but she would arrange something when she saw him. I then scanned and emailed the test results for the P.A. to print off and show to the Prof ASAP.

We called our Chemo Doctor dude who’s P.A. called him while he was on holiday (spot the difference between NHS service and private health service!)

Sarah then managed to get hold of her haematologist who was great and eased Sarah’s mind a little just because he was able to give her some information, although he advised that the results indicate that there may be:

a) a blockage of a bile duct or
b) a re-growth of the tumour…..gulp

But he also advised that Sarah’s blood tests results were all perfectly normal less than 3 weeks prior to these results.

So with that in mind and also with the fact that FHC is a slow growing tumour, for the symptoms to descend so quickly we were banking on the above option a). And I kind of have a gut feeling that this is very much the case.

10/04/08 to 12/04/08 : Chasing the NHS!

Sarah then spent the rest of the week trying to get hold of the Professor via the 'super-duper' P.A., and each day was fobbed off because it was either very close to the end of her shift, or she had lost some piece of paper the Professor had written on….and then the final straw was when Sarah emailed the P.A. after a week of unsuccessful attempts to even arrange an appointment…for Sarah only to get a poxy Out Of Office message!

(My head nearly blew up when I heard this!)

Here's a Pic of what that might look like!

At this point, Sarah’s itchy skin had become so constant and intense that she was starting to draw blood where she was scratching so much.

I would find myself being used as a human scratching post for Sarah…we’d be sitting on the sofa watching TV, and I’d feel a hand slowly appear and sub-consciously slide on to my face backwards and forwards like my chin was a scrubbing board! using my stubble to scratch her entire arm! Or in bed while Sarah was asleep, she would use the hair on my legs to scratch the bottom of her feet!!!

My Life as a Scratching post!

But on the upside, the forward thinking P.A. gave an alternative contact in her absence.

So, Sarah called her in desperation and was greeted with “oh you’re the girl that had the T cells aren’t you, let's see what we can do”

……within 30 minutes, she had made contact with the Professor, shown him the results and booked Sarah in for an appointment within the next 2 days!.......

As much as I was relieved that the ball was finally rolling, I had question what the hell this other mupppet had been doing for the last week.

So Sarah scratched her way (and me) to the appointment

17/04/08 Thursday : 1st Appointment

We arrived for the appointment, which was only running an impressive 1 hour late, alas the appointment wasn’t with the main man himself, it was with one of his side kicks :

So in we popped simply looking for a cause and solution of the itching.

The Doc quickly concluded that there had to be an obstruction to the bile duct, and arranged for Sarah to have an ERCP (that stands for Endoscopic Retrograde Cholangio-Pancreatography)…and a further CT scan

He also wrote her a prescription for anti-histamines and some drug that does something to thin the bile, this would relieve her itching and allow me time to grow back the hair on my legs!

Yes Yes,these are my massive chunky tanned legs...honest!

Within days Sarah received a letter informing her of her appointment and info on the procedure… it turned out that they sedate her then shove a tube down her throat not far off of the size of the Euro Tunnel, then wedge a TV camera down to see what’s going on!!

+ !!!

No not quite! I’m kidding, it looks more like this:

Tip of the duodenoscope cam used in a ERCP	This duodenoscope itself!

So on we pressed....

24/04/08 Thursday 16:00 : CT Scan

Nothing to report here, it happened and Sarah was accompanied by Sarah’s sister Emma (the crazy one! ?…or is that the mum and dad! I can never remember!.....hehehe….I’m so gonna get grilled when I next see them!).

29/04/08 Tuesday : ERCP (Stent) Day

I didn’t attend with Sarah as she had the support of her holy mother (also known as the local holy water supplier for vampire killers such as Buffy and Blade!....honest!)

Regulars of the Rev's Holy products

Sarah had to be there at nine in the morning, starved from midnight (which I thought was a bit out of order as that gave me zero time to dangle food and sweets in front of her!)

She went to the waiting room and got in to her lovely sexy hospital gown.

Then the anaesthetist and the person performing the procedure came to talk to her and were surprised with Sarah’s curiosity about the procedure (they’ve yet to learn that Sarah’s into gross stuff!).

Then she went into the room where they do the procedure, and Sarah seemed dismayed that she had to get up on to the table herself!...totally spoilt that girl! She doesn’t even expect to have to lie down without slaves like me assisting her every whim! After having a joke with the anaesthetist, he must have got bored of pretending to laugh because he promtly knocked her out.

The docs found that her bile duct was in fact blocked.

So at this point she had a plastic stents (12cm long) put in her blocked duct to keep it open.

And that was shoved around about here (thanks for the gross pic mum!):

The next thing she knew she was in the recovery room at Kings College Hospital and her eyes were hurting because she had a reaction to the drug Buscapan used during the procedure (apparently it stops the stomach going inyo spasm) but the side effect was that Sarah’s eyes went light sensitive and sore.

This is Sarah with sensitive eyes and a bit of a tan! (Playing Sing-Star!)

In recovery Sarah was told that they had inserted the stent which would allow the bile to drain away. They also said that they believed the obstruction was being caused by a mass pressing against the bile duct and that she should see her consultant to get all of the results.

She was then discharged with a letter, which when she opened when she got home, turned out to be the diagnosis of the ERCP …she found that in fact the last words on the letter were “Biliary Tumour”!

It was at this point I arrived home, needless to say, knees wobbled and our hearts sank after having only 2 short months of rest being in remission, we almost felt like we had been robbed!, and we were left with hundreds of questions and frustrations that couldn’t be answered until Sarah’s next consultation the following Thursday…..this is going to be a lllllllooooooonnnnggggg few days!.

01/05/08 Thursday 10:40 : Recurrence - Boll*x cr@p and $h*t! (Sorry for the swearing mum!)

The hospital has moved the liver outpatients department to what appeared to be a nearby house while they are undergoing refurbishments. With only the paint on the walls to entertain us I practiced my bored face again. The turnover in the waiting room was fast at about 45 mins, but it felt like 4 or 5 years to us both, just walking to the waiting room felt like wading though sand.

We sat down with another of the prof’s side kicks, who reviewed all the results and talked to us about them.

The doc reported that he could see maybe 5 recurring tumours dotted around Sarah’s new liver, that news alone made me feel like I had my own liver ripped out there and then! We had expected A tumour, but not five!!

He explained that the one causing the bile duct blockage was about 2cm in diameter, and the others were around 1cm across each, one being outside of the liver making a liver transplant non viable - but that was never an option anyway because of previous lymph node involvement .

Apparently an operation to cut out the tumours would not be on the table (no pun intended) as the 2cm tumour was too near a major artery and losing the bile duct would be “game over” and cause more problems that it would fix.

We asked why these tumours hadn’t been picked up before in a CT scan barely a few months ago. The doc explained that tumours can only be detected when they are 1cm big and above, and then ran us though Sarah’s scan pointing out each one (…wonderful….thanks!....it was almost like he was playing the game “Where’s Wally”!)

Our only option at the moment was chemo to try and kill or reduce the tumours to open up more options.

With the weather fitting our mood, it started to cloud over and rain heavily outside. We then went in to see our chemo doc in the next room to discuss plans about chemo and what would be available to her.

The Doc advised us Sarah would not be able to tolerate the same chemo she had last time.

And just as he finished saying it, a massive flash of lightning outside lit up the room giving a terrifying clap of thunder!

It seemed quite fitting for the news he was giving us! He then went on to say that any chemo Sarah could take at the moment would have to be more maintenance than getting rid of the tumours.

And again!... no sooner had he finished his sentence, a massive clap and rumble of thunder and bright lightning piercing though the window!!

What are the chances! despite the rubbish news we were getting, Sarah and I almost started laughing at the crazy coincidence and I half expected the Doc to pop his collar and start trying to bite our necks like in a horror film! bizarre!

You know what?! This almost looks like him!

One of the suggestions was Nexavar, be the Doc said he would go away and see what other options may be effective.

Sarah impressed me with saying, “well its quite weird that my body always seems to tell me when something’s wrong, the way the itching and the bile blockage told me something wasn't right and showed up in the blood tests. Otherwise it wouldn’t have been checked out for months, and I’m sure our options would be much fewer by then!”...now THAT is positive thinking!... THAT’S my girl!

We left, emotionally exhausted and booked in for another appointment for next week.

By the way, if you spent ages looking for Wally, I'm not sure if he's even in the picture - sorry!

22/05/08 Thuesday : Consulataion with the main Prof

We had an appointment with the prof today. we sat down with him as he went though the scan with us.

He then sat back and said “well I disagree…. we can cut those out, and I’m not sure what they were talking about a tumour being out side of the liver. Yes, we’ll cut them out, and the ones we can’t, I’ll stick a fork in and burn them!”….yes….there's actually a procedure where they open you up, locate the tumours, stick a metal fork in then and heat them up!!

After hearing that the prof was going to stick a fork in Sarah and cook her liver, we offered him a bottle of Chianti to go with it !! like some other dude we’ve once heard about.:

What a blinding relief!! Yes, Sarah still has a number of tumours in her liver – she and I’m sure none of us want to hear! But thank £$% her only option isn’t only uncertain chemo! Although it is likely that she will have some more chemo after the surgery to zap any remaining cells.

The prof said he would cut along the same scar on the tummy as before, but reckoned he would need to only reopen about half way along to perform the operation. Yes it is a shame as her scar was healing nicely and had started to turn normal skin colour after over a year, but at least it's in the same place.

Check out the ends! nearly invisible!

We asked the question that I’m sure is on a lot of peoples' mind – did the lymphocytes work? After all, it had been about 6 months since her last infusion. Sadly the prof said that the treatment probably needed about another 10 years research to get it right, and is probably only most effective on small tumours.

He asked us if we had any plans, and we advised him we planed a small trip to Prague at the end of May, so our main man of the hour said we could expect to have the operation in early June.

We didn’t float out of there with relief, but the weight from our shoulders had been slightly lifted, giving us strength for the path ahead.

23/05/08 to 25/05/08 : Not A Dicky Bird

Sarah chased up with the prof’s wicked PA trying to get an idea about dates, but Sarah was dodged with the classic….I’ll find out and call you back.

....a tumbling tumbleweed!

27/05/08 Sunday 12:00 : Prague - Short Trip Away

I was won an award at work for a job well done, and my company paid for a 1 night stay in a luxury 5 star hotel in beautiful Prague, I extended the tip to two days and chucked a few things up my sleeve.

We arrived at about 15:00 where the weather was amazing. We were picked up from the airport by a limo and taken to the hotel were we had a 2x room upgrade to a room with a luxury suite over-looking a peaceful garden, a lounge and two 32" flat screen TV's! with champagne on ice and stawberries waiting for us. - Check it out www.ariahotel.net

28/05/08 Monday 15:00 : ....The Boat ride

After spending yet another fabulous day wondering the beautiful streets of Prague, I took Sarah on a row boat down the river close to the Charles Bridge…

Yes, I managed to get on one knee on the rocking boat and pop the question (somehow without throwing both of us or the ring into the river)…..and YES was the answer (follwed by…”ow!....I think I’m going to be sick!” hehe)

I may look relaxed in the photo, but I was really pooing one of these :

….Does she really know what she’s getting into !?!? Can she put up with my rubbish jokes forever!?!?...She seems to think so!...I’ll put it to the test and let you know!

So now we have the dilemma that when we move in to our new flat, which is still in the legal process, we’ll have no furniture! Sarah’s wearing a sofa, dining table and bedroom furniture round her finger!!!....but Sarah doesn’t seem to care…..funny that!....I bet it would have been a different story if I had got on one knee on the boat and told her I spent all my money on a massive PC!!

29/05/08 Tuesday 20:00 : ...No word yet…still

Came back from Prague, no letter from docs, no e-mail from PA, no missed calls or phone messages….sigh

Chased up again and still nothing…….sigh.

30/05/08 Wednesday : ...Stick poking

Sarah Called the chemo doc and he said the prof was just in the next room and he would have a word directly to see if he can get things shifting along.

He came back to Sarah and said that they had agreed that the best course of action to take was for Sarah to have the op first and then chemo after.

So we began to wait for the prof to come back to us with a kick off date.

16/06/08 to 19/06/08 : Frustrated and still waiting!

Sarah was getting nowhere, with a fountain of fob-offs and delays. She then released me onto the case like a tormented blood thirsty Rottweiler, I set upon the PA and called every hour for 3 days

…Any news yet?...
…Any news yet?...
…Any news yet?...

probably driving the PA insane by the end, but I really didn’t give a flying toss!

Yes....that's me!

There seemed to be a bit of a mess with communication in the hospital and no one seemed to know who was needing to do what,
The P.A. told me that the prof needed to speak to the chemo doc to work out a plan, by then I stepped in and said “what’s to talk about?!, they’ve already discussed this about 2 weeks ago!, all we need is a date!!”

COME ON!!!

... OUT OF... !!!

I informed her that the chemo doc had already spoken directly to the prof and they had agreed that the best course of action to take was for Sarah to have the op first and then chemo after.

It wasn’t until I told a little white lie that Sarah was crying at work with the stress that it got things moving like powerful laxatives in a badly constipated bowel! And the P.A. gasped and leaped into action. She called Sarah right away and went and spoke to the prof in surgery…THAT’S more like it!

I called Sarah just after the P.A. had called Sarah directly to tell her to tell her that I had got things moving. Sarah asked me how I managed it as our various tactics so far had been unsuccessful, so I confessed I told the P.A. that she had been crying, Sarah burst into a fit of laughter and embarrassment as it all came to light as to why the P.A. was talking to her in such a soft gentle voice and being ever so nice and helpful……well……got the ball rolling didn’t it! And I didn’t have to put on my scary face and go down there shouting at people! Everyone’s a winner!

So Sarah was referred to the bed managers….finally!...but oh my gosh, this was turning into a snail relay!

20/06/08 to 26/06/08 : ...Slow...Motion...!

Sarah called the bed managers to find out what was going on and was told that she was on their list and that they would have a look into it - but did not call her back as they had promised. At this point, Sarah’s anxiety pretty much maxed out - it was more the lack of information than anything else that was so stressful. It is fine if the docs don't think it is urgent and can be scheduled after more critical patients, but if so, we just need to be told that or at least told why there is such a delay.

26/06/08 Thursday : Operation arrangements getting closer

Today Sarah bumped into a colleague at work. Got chatting and of course, the top thing on her mind was the painful waiting she was going though!....it turned out this colleague’s sister was a senior member of management in Kings Hospital liver unit.

We had officially found our inside Mole

He soon got on to his sister expressing Sarah’s situation and urgency. She immediately replied giving us confidence and hope that something would finally be done.

Before we knew it, Sarah was being called by the senior bed manager, the registrar and the pre-admissions nurse! How’s that for a turn around! (I was almost tempted to tell Sarah to put them on hold for a few hours! See how THEY like it….but on 2nd thoughts!...) Sarah has now been bumped to 1st class and pretty much had the red carpet rolled out for her in the fast track!!

27/06/08 Friday : Operation 3 confirmation

Finally!......They confirmed that Sarah will be having her op on Monday, July 21st, going in to hospital on the 20th! What a relief! Finally we can start arranging life around that.

I’ve pushed the estate agents on the lovely flat in Blackheath we found, and told them we need to be in while Sarah is in hospital, so when she returns home, she doesn’t have to be shifted again (and it’ll also give her something to look forward to!)

So we exchanged contracts the other day and are due to complete on the 23rd! with the help of anyone who I can persuade to take that day off, I’m moving in our stuff that same day! As I’m guessing that Sarah is going to do her bionic thing again and recover in 3 days flat! Which doesn’t give me much time! :-s

So I’ll do my very best to squeeze an update out just after the op, but thereafter my PC’s will be shut down and broadband will need reactivating in the new home, so I’ll have to backdate her recovery progress when I’m back up and running.

Sarah has a Pre-assessment on Thursday 17th which is going to consume most of the day, but we should find out more details about what adventures Sarah has in store for her in the up and coming op.

Again, as always, thanks for reading my drivel, and watch this space!

Dave & Sarah

17/07/08 Thursday : Pre-Assesment for Op 3

We started the day off early as we knew what to expect from the lovely waiting rooms. We arrived at the blood unit around 9am only to find that Sarah was the only one there! Result! So she zipped in and out.

Our next appointment was at 10:10 at the newly referb'ed Liver Outpatient Unit, to be pleasantly surprised by the new lay out....which somehow managed to reduce the amount of space!

She was quickly weighed, measured and also seized the opportunity to show off her engagement ring to the nurse…at which point I must have been “sold out” by the nurse about 27 times with things being said like:

“hope you’re saving for the wedding”

“now that you’re going to get married, I hope you’re going to do all the cooking”

Etc, etc, once that nurse got going, there was no stopping her!....(grrrr)

We then were on the road again to haematology where Sarah had a chat about her blood and best course of action for her injections leading up to the op.

Then back to Liver Outpatients, where it is was getting nauseatingly busy, for swabs and a vague run though her notes but we were jumped to the front of the queue, but had to wait in the head nurses personal office as there were no seats left.

I took it upon myself to test out sitting in the hot seat of the NHS.

Then before we knew it, we were done! Possible the fastest turn-around I’ve ever known! So much so I had to un-pitch the text I setup in the queues and we totted off home where we fully utilised the rest of the day crashed out asleep!

20/07/08 Sunday : Admission for Op 3

Sarah had a call from the hospital to arrange for her to come in between 17:00 and 18:00, Sarah clearly stated to the bed managers NOT to save her ANY food, and this was reiterated about 6 times in a 2 minute phone call!....anyone would think she doesn’t like their hospital food.

We found that she would be perched in RD Lawrence ward. So we went in to the hospital arriving about 20:00 (to ensure the food was definitely, definitely gone! (although my cooking was probably much worse!)

But to our relief, Sarah had been placed into the empty 2 bedded room for high dependency as there was no room on the ward….what a shame!

We stocked up on snacks and biscuits on the way there as Sarah would be nil by mouth from 12am, it wasn’t long before this mysterious hand appeared and took no time at all cracking into the jammy dodgers!

Sarah’s hand! Honest!

Still Sarah’s hand….force feeding me!

My jammy dodger hamster impression!

And funnily enough, Sarah’s back in the bed she was put in after her first major op!....great!

Looking lovely as always

We tried to get a time from the nurse for when the surgery was due to take place, but she was unable to tell us, saying that the list usually doesn’t get released until 03:00, and surgery could start as early as 07:30!!!!...but you know what….I ssssssssssooooooooo doubt it! But Sarah will text me as soon as she finds out, else I plan to get there as early as possible…for me, that’s about 10 or 11am! ?

We chatted for a while waiting for the Doc. When he came by about 21:10 to take blood…again, he chatted to Sarah who began to rattle off a long list all her requirements and blood status, at which point he stopped and asked her about her profession as he seemed to think that Sarah was from the medical field as she knew so much!

It wasn’t long before I was caught by the nurses and was chucked out! So I reluctantly left a smily Sarah and headed home.

Sarah has a rubbish mobile signal in the ward, so she may not get your text, so any messages she gets via email, I’ll pop on the laptop and take them down to her each day.

That’s it for today, I’ll keep you all posted.

Cheers

Dave

21/07/08 Monday : Operation III Day

So I arrived at 8:30 (ish!) and paced up and down the entrance of the ward contemplating whether or not to break in to the ward before visiting hours. (I brought my ninja suit with me just in case)

Yep!..that's me!

After about 10 minutes of looking like a weirdo stalker, I took the plunge and snuck in to find my Sarah.

Sarah was pleased to see me and got up and we went out of the ward where I WAS allowed (Sarah being a rigorous rule following compliance officer!)

We were shortly joined by Sarah’s mum “The old Rev’y chick” Sarah then told us that the docs had arrived and discussed some of the procedures.

Sarah was told that she will be having a “Laparotomy” (where they cut in to the tummy) then radiofrequency ablation (the burning bit!)– If they find that the bile duct has to be removed, the bowel will need to be attached to where the duct was.

Below is a pic of what the professor may look like during the frequency ablation burny bit!

Also, if there is a tumour next to the gallbladder, it may need to be removed, in order for the tumour to be burned away. The Gallbladder is used to store bile that is released when Sarah eats fatty foods…yes…cheese will be off the menu! Sarah’s giant mouse days are soon over! So this will cause her problems if she does eat fatty stuff – what – we’re not sure yet….maybe I should have mine whipped out!

Then it all got very dramatic when all the fire alarms went off and all the doors shut, and in true British style, all 3 of us, just sat in the corridor and ignored it until we were told to get back in the ward – where Sarah quickly slipped back in to bed.

We then had a visit from the lovely lady in charge of the all of the nursing staff who popped in to say hello and introduce herself (Sarah works with her brother) and she was closely followed by one of the senior surgical nurses who advised that Sarah would probably go in for the operation around 13:00, and not to eat or drink anything.

A new doc came in with a consent form saying they wanted to take a part of the re-section for research by taking out liver cells and then working out how to study functionally and long term storage within children.

Me and ye old lovely mum went off to get tea and give an exhausted Sarah some sleep.

We returned about 12:00 only to be rationed to 5 minutes visiting time and chucked out to the corridor again! There we sat waiting for 13:00 and jumping to attention to every person that stepped into sight thinking it might be Sarah being wheeled down to the cut ‘n’ chop shop.

Then about 13:20 Sarah appeared walking down the corridor! There she informed me and the now mother-in-law-to-be that the docs had postponed her operation until tomorrow morning first thing. Apparently, when the guy in surgery before Sarah was opened up (yuk!) the prof found too much wrong with him and what turned into one operation, turned into 3 and major reconstructive surgery…poor sod.

So Sarah’s going to stay another night in the hospital, and go though the starvation process once again. But at least she’ll be first in line tomorrow and the Prof will be fresh and ready to rock.

So you can all uncross your fingers for today, and re-cross tomorrow and I’ll be packing my brains out tonight after loosing a day.

I’ll keep ya’ll posted

In the mean time, here's a question I want you all to find the answer to :

What on earth is this hospital doing with this ridiculously over sized calculator we found?!

Sarah suggested it may be to prevent "fat finger syndrome" Answers on a post card please! (joke - I dont really want the post cards!)

Cheers

Dave

22/07/08 Tuesday : Operation III Postponed...Yet Again!

Today started early with me arriving at the hospital at 07:40 armed with clean PJs and dressing gown, and some weird can of Evian facial spritzer that Sarah requested, which I planned to use to penetrate the ward defences.

I walked in and was confronted by the dragon nurse who told me off once for lying on the bed in my “public transport” clothes. I quickly whipped out this weird spritzer thing to slay the dragon saying:

“Sarah asked me to bring this in before her op”

My god! it really looks like her!

I was in! I used all my combat skills from my army days in the S.A.S to stealth into the ward and plant myself in the corner next to Sarah’s bed and waited for her while she had a shower.

Thats me, 2nd from the right with my old regiment!..not sure about my pose!

Sarah eventually appeared and was pleased to see me but immediately hit me with the question “Did they let you in?!?!”, “I don’t want to get in trouble!!”

Sarah updated me on yesterday's events. The prof had made a personal (and apparently very tired) appearance at 21:30 to visit Sarah and apologise in person for her delay, but it got to 16:00 yesterday and the prof still had along way to go with the other guy and he wanted to be fresh for Sarah's op the next day.

She’s first on the list today, and no other ops are taking place before her…touch wood.

Sarah then packed me with a huge pile of clothes she wanted me to take away and wash and promptly chucked me out in fear of the dragon lady's return (I mean the nurse, not the mother-in-law! hehe).

All that!...in 2 days!

There I sat in the sweltering corridor where I was subjected to the stare of some crazy guy with really REALLY wide eyes! (I mean REALLY wide eyes, I don’t know how they were staying in the sockets!) He seems to walk up and down every day just staring people out as he walks past. I’m going to nickname him “Frankie wide eyes” or “Insanely crazy mentally wide eyed guy”….I think he wants to fight me, but nothing a 2 finger poke attack can’t sort…I can’t miss!

He's not looking as aggressive here!

Sarah’s mum arrived, and 09:00 was soon upon us…. Then 09:15 swung round and Sarah’s mum got itchy feet and went into the ward to see what was going on.

There she bumped into the professor who was on his way to see Sarah. He informed her that not 1, but 2 emergency liver transplants arrived over night, so Sarah’s operation was postponed yet again

……AAAAAAAAAAAAAAAAAAAHHHHHHHHHHHHHHHHH!!!

But he would do his best to ensure the operation would be done tomorrow... or the day after....

We decided to pack up and I dragged Sarah home to help me pack the house up. She should get a call later today to let her know the plan and whether she has to go back to hospital tonight.

Tomorrow will be really tough if she has the operation as I’m moving all our stuff out first thing in the morning, so there’s no way I can do that and my duty of wearing out the floor outside the operation theatre which weirdly enough is gona drive me nuts! Oh well.

As always – will keep you posted.

Lastly - a big thanks for all the lovely messages, cards, e-mails and support - it's really appreciated, sorry to those we haven’t had a chance to reply or get back to, but we will….eventually! ;-)

Cheers,

Dave & Sarah

23/07/08 Wednesday : Operation III 09:00 (Pre Update)

Sarah chased up the hospital though to the early evening last night, and after being teassed by being back home for a few hours, she was called back in last night.

Her operation is again at 09:00, so we'll wait and see! but I'll be 100% relying on the inlaws to update me as I'm moving house, (such bad timing! and I hate it!) but once she's out, I'll pop in and see her, then do a proper update.

23/07/08 to 24/07/08 : Operation III Unsuccessful (Sorry)

Right, here’s 2 days updated rolled into one as I’ve just managed to unpack and setup my computers amongst the other 1 million things I’ve done and have got to do between being a ward clown for Sarah at the hospital

As expected, I have no internet connections in the new place (or the old now) but I signed up for a painful slow dialup connection just before we left and had to resurrect an old modem from the dead!, its really rubbish! So there’s going to be a major lack of pics in the updates until I get that sorted. And I’ll do my best to download e-mails and take them in to her.

So apologies for not getting a message out sooner, I know a lot of you have been anxious to know how Sarah is.

A big thanks to Dave, John, Kat, Emma, and my mum who all took the day off and clubbed together to really help me shift ALL of Sarah’s shoes (millions of them!) I couldn’t have done it with out you!...BUT WHO put a “Living Room” box in the Bedroom!?!?!.....KKKKKAAATTTTT!! ;-)

Sarah went into theatre On Wednesday at around 09:00. I was unable to be there due to our house move (which I was gutted about), but she had the support of her mother outside (who might I add as dodged every “request bullet” fired at her for cleaning assistance like neo in The Matrix!!!?

Not long in to the ops, she was called back to the op theatre by the surgeons.

When the prof opened her up, he found lots of little tumour nodules spread across the inner lining of her bowel, outside of the liver. He took a Biopsy of one, and cut out one of the larger ones. The Biopsy came up as positive for FHC tumours.

So surgery was ruled out as an option for Sarah at that point and she was stitched back up.

The professor advised that he thought the best course of action was chemo and bio-chemical treatment at this stage (which from what I understand is a kind of maintenance drug that stops the tumours making new bloody vessels and growing)

So all in all, crap news I’m afraid, BUT this is where we where when Sarah had the reoccurrence don’t forget, we were told that surgery wasn’t an option then. So it seems like a step back, but there’s plenty of steps forward that can be, and WILL be made, its just not the news we wanted.

Disclaimer : I’m sure there maybe corrections to the details later on

An option is an option at the end of the day, so we’re going to focus all our efforts on getting Sarah back on her feet as quick as possible, and as positively as we can to get her on the chemo treatment.

Sarah’s ok, totally fed up with hospitals and the food, and her epidural is causing her to itch constantly when doesn’t help. She’s extreamly drowsy due to the drugs and falls asleep mid conversation….although I think it may just be me that bores her!...how rude!? But she's dong very well, and has highs and lows, but always greets me with a lovely smile.

Saying all that, she completely turns around when I talk to her about weddings, I haven’t been able to find a mag about that stuff yet, but I’ve sent one or 2 people on a mission to help me out there. She also perked up when I bought her a New Home mag for her to flick though for ideas! She loves it!...never did I think I’d see the day when wall paper or cushions would out-class me on the entertainment front!

She also had a visit from a fellow FHC trooper which was nice, (sorry I missed you! Good luck)

I’m going into see her when I can today, so I’ll update the site when I can.

She’s currently on Dawson Ward on the 1st floor. The docs recon she’ll be in for 6 days, so I have until Wednesay to straighten the new place out for her!.....EEEKK!!!

Sorry I'm not delivering better news, but we're staying positive at our end, and may the fight continue.

Cheers

Dave

25/07/08, Friday : Recovery Day 2 – Deadlines!

Hi All, just a quick update while I stuff down my dominoes pizza for my Sunday dinner! Yum! Aain, sorry to clump these updates together, but I haven’t had any time recently, plus I still have no internet, so I’m updating this site though my mobile phone…man I’m not looking forward to my next bill!

Sarah was still feeling grotty when I got there, she has zero appetite and just the sight of the lovely hospital food is making her feel sick!...I have no idea why! It looks so tasty!! Buts its starting to stress me out as I feel her body needs something to help her heal up and get better.

She’s still pretty drugged up and the itching continues and the moans get bigger and bigger, but I think she’s totally earned the right the odd moan here and there, she’s just generally fed up about her situation, hospitals, the food, etc but I did my best to keep a smile on her face.

She impressed the physio today with her utter determination to get back on her feet, and had a little plod down the corridor…already I can see my dead line of getting the house sorted before she gets back is being cut shorter and shorter!

Sarah then advised me that the prof came round, and said he couldn’t see why she couldn’t go home on Monday or Tuesday, to which I replied

“MONDAY!!!!!!” but….but…but… the house!!?!?”

So after recovering from the shock of my deadline, I then realised what my real purpose in life was while Sarah is in hospital….was to arrange - re-arrange – and re-re-arrange all her stuff for the last 45 minutes of visiting time so its just where she wants it and in her easy reach!...hurry up and get better Sarah! PLEASE! ;-)

I then trotted home and got in about 23:00 after a lovely meal with my mother (the old deer!) where I had to MAKE my bed (i.e. assemble it!) before I could actually make the bed (i.e. get in a duvet cover and wrestle with the duvet until all the corners went in!) and only then could I get in it!

26/07/08, Saturday : Recovery Day 3 - Epidural Saga

An interesting day today (well this happened last night, but I found out today!), as you know, Sarah has an epidural which pumps high quality class A drugs directly into her spine. Sarah had to sign a disclaimer as there’s a slight risk that bleeding into the spine may occur on the insertion or removal, which could cause paralysis (apparently!).

Well anyway, Sarah went for a walk (as you do after a major op a few days ago!), and the epidural fell out!!! But thankful she proved paralysis didn’t occur… by walking up to the nurse and pointing this out! (I guess the walking bit was the “tell tell” sign!) So now the poor girl is having injections in her arm for pain relief AND for blood thinning.

But on the up side, her epidural was out and I was welcomed at 17:00 by a much fresher chirpy looking Sarah, holding brilliant composure and flicking though wedding mags with a big sloppy grin on her face. Which was shortly followed by

“Its 5 oclock!! THREE HOURS after visiting time started!!!”

(opps!), but she was pleased when I showed her pics of the new bed – tried and tested!
We then went for a lovely romantic walk together….down the hospital corridor which was cut short when we reached the kitchen at the end, Sarah got a whiff of the culinary delights to come and felt sick again, so spun round like 2 hot-rod snails and turbo snailed it back to her bed, very impressive!

My mum came in with come chicken broth which Sarah managed to eat quite a bit of! FINALLY! SOME FOOD!

27/07/08, Saturday : Recovery Day 4 - Visiting Day

Well the in-laws ducked out of cleaning out house again, so I’ve decided that for Christmas, they are both getting a pair marigolds and a feather duster each! And I’m going to put their names in the Yellow pages as a free national house cleaning service! ? kidding! They did their dutiful job of looking after my Sarah while I wan’t there, buying me time to get the place sorted for a possible home coming on Monday.

(I was only kidding about the marigolds and duster, the rest I’m going to do! ? )

But Sarah’s Sister, Emma stepped into the breach and helped clean out the house while I ran round getting some needed bits and bobs then came back to chip away with the last bit of essential unpacking

I then went in about 3 with Emma and she egerly continued to flick though mags.

She was visited by her friends Fred, Kathryn and Netis.

I popped down to see a fellow FHC warrior in another ward, who was looking remarkably in good sprits after another major op – fantastic stuff! Well done and keep it up! Lovely to finally meet someone what shares Sarah’s disgust of the hospital food and the super doper air conditioning!

At the end of the visiting hours (well, I pushed the limits by about 30 mins!) I left her looking happy and more with it, just in a little discomfort as the medication she’s on itn’t as effective as the epidural, but nothing that tuff cookie can’t handle.

28/07/08, Monday: Recovery Day 5 – SARAH COMES HOME!

Well, in short, since moving into our apparent nice neighbourhood 3 weeks ago, I’ve had my car window smashed in (someone trying to nick a Sat Nav that wasn’t there!), and we’ve had our garage broken into and bikes nicked (welcome to the neighbourhood!), mix that up with Sarah’s health at the mo, and a load of people being made redundant at my work (so I’ve been moved to another area in the business with lots to learn), my patients are frade, and I’m on the verge of becoming a 1 man band vigil anti. I’m sure it’s the 90 year old lady across the road who nicked the bikes….I was almost positive there were zimer frame marks in the dirt leadin from our garage!....(I’ll get you old granny!).

Above is an "E-Fit" put together by police

But rather than this being a moan, its more of an excuse for may lack of time for updates recently so apologies as I know a lot you have been waiting on this, and I can only thank you all for your patients.

The below updates go way back from where I left off. I wrote them up at the time, but didn’t have the internet or the time to put them on the site.

After the below updates, I’ll update every now and then with anything major (as some bits of this update are probably going to have you banging your head up against a wall with boredom.

An excited Sarah called me this morning to tell me the Docs had come round and said that she was allowed to come home!

Sarah’s mum the (artful Marigold dodger) spent the rest of the day with Sarah in the sweltering hospital waiting for tests, meds, and discharges etc, in fact it took so long, that it was about 4pm before they finally escaped! (Well that’s one way to fully drain ALL the excitement of going home!)

I could barely wait to get home as I half skipped like a girl and stumbled over my feet down our new road. As I approached the house, I could see this lovely big smile just popping out of the curtains! (No, it wasn’t Sarah’s Mother, it was Sarah herself!)

I was welcomed home by a very delicate Sarah hobbling about in our new flat, and the mother in law had totally redeemed herself by cooking me a proper hardcore roast dinner! How’s that for class!!...sssoooo…..what are YOU going to do mr dad-in-law to be?.... I know a place that sells nice sofas and bedroom furniture?!?! ;-)

Anyway, Sarah had seen a nutritionist before she left hospital, and came back equipped with an array of drinks called Nutricia Fortijuce which are packed with nutrition to help Sarah gain weight back. Although she says that they taste disgusting.

It would appear that new tumour formation was irritating her bowel preventing her from absorbing food properly, causing her to loose weight, which wasn’t helped by the fact that she hadn’t eaten properly for 5 days in hospital due to drugs and nausea.

Not a few hours after landing her feet in her new home, Sarah took the new bed for a spin around dream land and was out for the count after the exhaustion of a week of hospital took its toll. It’s SO good to have her back, our house is now a home.

29/07/08, Tuesday: Recovery Day 6 - Day Of Pain

Poor Sarah struggled today as she was in a lot of pain around her tummy. There seemed to be a vicious circle occurring where her tummy was swollen by fluid and air which prevented her from feeling hungry, the drugs she was taking caused nausea and lack of appetite but the drugs needed to be taken with food else they cause more nausea.

I called Sarah who sounded very groggy and uncomfortable, but still pleased to hear from me. Her mother made a gallant effort to stuff food down her chops, but this proved too difficult for Sarah.

Her sister Lizzy turned up in the eve ready to take over the looking after of Sarah for the next few days.

30/07/08, Wednesday: Recovery Day 7 - Bouncing Back

Something that passed over my head the first time round, but the NHS refer a district nurse to patients that go home after surgery. This nurse visits the patient at home and re-dresses any wound.

Today Sarah was due a visit by the Greenwich district nurse, but was told that even though her current doctor was based in Greenwich, her address was Blackheath, so was not covered by the Greenwich District nurse! And therefore alternative arrangements would have to be made as they would not be coming out to Sarah, and that she should go into the surgery in Greenwich instead.

This sounds like a job for…..SUPER IRRITATING DAVE!!

Sarah gave me the number of the district nurses, and I set upon them like an itch in the middle of their back that only Mr Tickle with his in-humanly gangly arms could reach! (there’s something seriously wrong with that dude’s arms!...did they not spot it at birth!?!)

So I called, and got the engaged tone, and with the tap of two buttons on my phone, I had redialled in seconds to get another engaged tone. This went on for about 5 minutes, until the very instant the phone was put down, I was calling in! (nothing worse than putting the phone down to have it ring again!)

I was given an ever so friendly welcome (not) by the receptionist. I told her about the situation with Sarah. She looked Sarah up on the system and said,

“oh yes, she’s due a visit today by our nurse, no problems”

…. So on a slightly dubious note, I made her take my mobile number in the event of any problems.

Low and behold, 20 mins later, she called back saying that Sarah was outside of the area they covered, and they arrangements would have to be made by Lewisham! And man! This woman would not back down! Totally ruthless and uncompassionate!

So I was forwarded on to Sarah’s Greenwich surgery who were having problems getting in touch with the nurses and were trying to force Greenwich to pull their finger out.

I got a name of a doc that was trying to contact the Greenwich nurses but was getting no feed back, then hit the phones with my ninja two button technique!

Again I got a flustered and frustrated receptionist saying

“There’s only me in at the moment, and every time I put the phone down, it rings again!!!”

Hehehehe

In the end, they organised another district nurse to pay Sarah a visit that day!

Sarah’s appetite has increased a bit today, she’s eating a lot more which is great, sounds and looks so much better, but still walking around with me calling her “chubbs!”

29/07/08 to 24/08/08 - Ascites

Sarah hasn’t been feeling too good recently, her stomach bloated up quite a lot after the op – know as Ascites, where a lot of fluid built up around her tummy where the op was and where the tumours were. They call it Ascites, I call her “The Budda Belly!”

This was causing problems with Sarah’s eating as she was left feeling constantly bloated. We were bombarded with loads more FortyJuice and FortySip which Sarah detests, so I’ve resorted to slipping it into her drinks and food where I can like an assassin – but she can still detect it! So she hasn’t eaten much at all.

So with all that, Sarah lost a lot of weight (the girl didn’t have any weight to loose in the first place!)

She eventually had the fluid drained on Wednesday 20/08/08 in London Bridge Hospital where she had 4 LITRES drained!!! Wow! I didn’t know there was THAT much of Sarah to drain!, loosing her a further ¾ of a stone in weight!

Above shows one of the bags filling up in a ver short amount of time!

She then began to experience a lot of tenderness and pain in her bowel region which was really hard to see, this was the first time I’ve ever seen her in pain related to the cancer, and raising her sprits was tough as she was bogged down and hounded by discomfort.

The docs were concerned of this and did an ultra sound of Sarah’s bowels and found that one of Sarah’s urethra’s to one of her kidneys was blocked – this was indicated by the fact that one of Sarahs kidneys was dilated

Apparently, the bit that filled up with fluid was the yellow bit in this diagram, its apparently not quite like the above, but like a shrink wrap around the organs.(ew!)

Quick med tip – kidneys process wee, and the wee passed though a small tube to the bladder called the urethra…I didn’t know that!...well, at least the gory details!

The Chemo doc wanted to get this sorted, more as a precaution before chemo kicks off again, because even though Sarah’s kidney function was fine, if there were any complications with the other good kidney during chemo, any actions could risk infection which Sarah wouldn’t be able to fight off as easily.

The good thing about all this was, that the chemo doc wanted to crack on and get the chemo going saying “This is a good window of opportunity” to treat Sarah, and with he previous reactions, anything positive from him is amazing by comparison to anyone else!

So Sarah had a minor procedure where they stuck a cam up the tube, and inserted a small stent to re-enforce the tube and open it up. During the procedure, it turned out that the tube was kinked, and this was straightened out.

So poor Sarah has been stuck in hospital for 4 days now, although slightly more comfortable, the procedure left her feeling that she needs the loo every 5 minutes, thus making her uncomfortable again (DOH!...swings and round-abouts), and she found it very tough to keep what little food she was eating down as it was making her feel sick!..... saying that, she still seems to have a very selective tolerance for bloody expensive sushi!...hmm…she seems to manage very well on that!

She also found that she could manage crisps! At this point I was getting desperate for get anything food-wise inside her, so the moment she indicated she might manage a single crisp, I was down the shops in a flash, grabbing every bag I could!! So there I was, somehow balancing 15 bags of crisps, savoury bars, nuts, and what ever I would think of that she might like, then this 10 year old kid turned round in the queue and saw me!, he’s jaw dropped and with wide eyes of amazement, gasped the words

“Crisp CCCccccRRRaaaaZZZZzzzyyyyYYY!!!”

So with an embarrassed red face, I muttered back

“they’re….they’re not for me!!!”

realising that I looked like a binge eating crisp monster in the middle of London Bridge Station!...even the cashier gave me a funny look at I poured the crisps on the counter and dashed back to pick up more chocolate!...but I don’t care, anything to get Sarah to eat something!

But worry not, she’s on whole host of drugs, and it rattling round like a pot of pills! On Sunday, her appetite started to slowly come back, and she is having bursts of feeling much more perky and back to her normal self, but her energy is still low and needs her sleep (lazy cow! ? ).

Her sprits are getting back to where they need to be, as High as possible…proved by the smiles we had when I got onto the bed (unusual!) and tested out JUST how far in an upward direction the electronic bed could actually go!...got to about 6 ft before it stalled with both of us on it!...and a panicked Sarah was quick on the “Down” button! Hehehe she’s always worried I’m going to get her in trouble with the staff!...me?!...never!!

She still gets very tired quickly, today (Sunday) we popped down to the café outside the hospital, but after spending days in a hospital room with 2-3 visitors, she was overwhelmed by the stimulation of the queue for the London dungeon and people generally everywhere, and we soon turned back from our field trip.

So our bank holiday weekend was spent hanging out at the hospital, and I brought in TV shows I recorded for her. So we’re playing it day by day at the moment, she may be starting her next bout of chemo either tomorrow…or more likely on Tuesday. I left her on Sunday night after having a good day, eating more and sleeping lots, so she’s on the mend and turning this round!

I’ll do my best to keep you all updated.

And lastly I have to give a GOLDEN shout out to my mum (manic wonder woman!), Sarah’s mum Christine, here sister Emma, and her dad Alan (Thanks for the sofa inlaws! :-) ). They’ve all been doing all my washing and cooking, cleaning and looking after not only Sarah but me too! I can truly say I’ve never had my pants ironed before! its been great!

SILVER shout out to Sarah’s sister Lizzy for looking after Sarah for a couple of days, (You only get a silver cos you ate pretty much everything snacky or chocolate covered that we had in the house! Grrrrr!...and all my juice! You drank all my juice!! ;-) )

Also, thanks to all for the encouraging and supportive mails we’ve had, some truly touching things said and have really helped both Sarah and I though this rough patch.

I have no doubt that Sarah will push though this as I still see that fantastic glint in her eye of determination to not get beat down.

Signing off for now

Bye!

Dave & Sarah

So, last you heard from us, Sarah was about to start chemo with a big ascities belly after a disappointing operation.

Well, things have moved at quite a pace since you last read her update (and since I pulled my finger out and updated it!) ! So we both apologise for not getting back to every call, text and e-mail, but time’s been short with a lot going on.

26/08/08 - Chemo Cycle 1 (Part II) [ Return To Top ]

Following the success of the stent to unblock her kidney (which had to be redone due to discomfort), Sarah finally received her first cycle of chemo today and was allowed to go back home after monitoring.

04/09/08 - The Week after [ Return To Top ]

Sarah’s been struggling to eat due to her stomach increasing in size. We got to Wednesday and she called me at work to tell me she was being sick every time she ate. By the afternoon my concerns were high as she reported that she had been sick 4 times!

She has lost a lot of weight – down to 8st (and size 6!) (UK size thank you very much international readers!) I raced home to get her to hospital, (Cheers for letting me out boss!) I chucked her in the car (head first! :-s )and sped to London Bridge Hospital with a plastic bag in hand for our travels!.

Once in, we were visited by the Chemo doc who felt Sarah’s tumours area and bloated tummy. He was pleasantly shocked and surprised by how much her tummy had reduced in size and felt her tumour area and was impressed by what felt felt like a reduction in tumour size. He then laughed that he had administered a highly effective but intolerant regime. (Yeah! Nice one!)

They then put her on anti sickness medication, diuretics tablets (to help her drain the excess fluid) and pain killers for her tummy. Also her legs. particularly her DVT leg had started to swell up!? Apparently it was due to oedema caused by the pressure of the ascities.

Sarah was kept in hospital, but days into the treatment, She's still struggling to keep food down (and all the tablets she was taking) and her weight was still dropping at a scary rate, which was being masked by her large ascites tummy causing her weight to be higher than it should really be (1 litre of fluid = 1 Kg of weight).

Because of all htese problems, they fitted her with an anti sickness and morphine pump (Syringe Driver), which basically is a machine that is attached to her arm by a subcutaneous needle on a tube and squeezes a syringe over a 24 hour period

Modern technology enh!

We were told to be careful as these things were very expensive at £900 a go!!....suckers! you can pick them up off of Ebay for £200!

So there she remained at London Bridge Hospital, with myself and the family visiting after work each day…Home’s crap without Sarah…but they won't let me move in at the hospital! So I’m there as much as I can be.

06/09/08 - Stolen Home [ Return To Top ]

Sarah became increasing frustrated that we just moved into our new home, and she had barely spent any time in the house. So at that I stole Sarah for the night, begged on my knees to the nurses to let me take her home and used all my charm offensive (which roughly translated means I bribed them with chocolate!...but I did actually get on my knees!)

So finally we made it home where I spent a joyous evening being told I had put everything in the wrong place…but you know what! It was great to have her home.

I also seemed to subconsciously home in on her arm the pump was inserted with every hug! Opps!

After a night back in her own bed, I sadly had to take her back to the hospital as the pump was due to run out…only a few hours later than promised….opps!

11/09/08 – Ascites Drain II [ Return To Top ]

Sarah had about 5L of fluid drained from her tummy!5L!!! and I can now officially fit Sarah in my pocket!

And the following day she had 2 units of (someone else’s) blood!.....eewww…rank!

19/09/08 – Bad day, things not looking great [ Return To Top ]

Sarah’s sister Emma visited on Friday. About mid day I got a call at work from a very upset Sarah which nearly broke my heart to hear her so sad, telling me what the nurses had been saying to her.

She had had a visit from the McMillan nurse who had been following her progress and reviewed her file. He advised Sarah that every symptom they had addressed and got under control, 2 more symptoms popped up.

Also that her Blood levels were too low to have her next bout of chemo which was already 2 weeks late, and that she wasn’t getting better. The chat was concluded with the advice that if we were to get married, that we should be thinking about doing it sooner rather than later!

No pressure!...

After hearing that, I just couldn’t focus at work! I found myself walking corridors fighting back tears, so I duly composed and myself and spoke to my boss who released me from work without hesitation, Sarah was only 20 minutes walk away across the city, but I grabbed a taxi (and not just because I’m a lazy git!) the driver put the pedal to the metal for about 5 seconds before hitting about 35 red traffic lights…..good old London traffic!

I even saw a snail over take me from the taxi!

When I arrived I was taken to a room and sat down with McMillan nurse in a room and presented with the same info. We also chatted about Sarah’s current quality of life and how they would set Sarah up to come home…..yes, THIS was the kinda conversation we were having to deal with! It seemed the nurses were preparing us for the worst!

I couldn’t help but say to the nurse

“I know your doing your job, and making sure there are no surprises round any cover…AND that things on paper don’t look good, but I don’t think this quite applies to Sarah, I know what she’s like, I think she’s going to turn this round”

So after a good chat with Sarah, we arranged to steal (with permission) a metallic purple wheel chair from the hospital, and with pump in hand – home we rolled!

Kinda like this…but with spoke alloy wheels and a subwoofer and “go faster” stripes!

20/09/08 – Blue Water’s Hand break turn [ Return To Top ]

To help resolve Sarah’s frustration, I took Sarah to Blue Water shopping centre (every male’s living hell!) to pickup some things for the house….in a wheel chair! (Sarah was in the chair! not me……she wouldn’t let me!)

I’ve never done Blue Water with a wheel chair (can’t think why!) but it was great! we could do shopping…man speed!! So with Sarah strapped in, I literally sprinted between shops with a terrified Sarah and other shoppers diving out of our way! Making the chair tires screech round corners like a rally car! And for the first time ever I was able to play “chicken” with mothers with prams who usually aim straight for your ankles! …I won every time!

The only problem was, every time Sarah asked to be wheeled over to something to look at, I’d wheel her up so I was level with it, forgetting Sarah was about 2 feet in front of me, which after a lot of neck twisting on Sarah’s behalf, complaints soon turned to telling off! Hehehe – opps!

She could have done with a neck like this lady’s!

But we did find that Sarah felt trapped in her chair as she thought she would look like something out of the TV show “Little Britain” if I wheeled her up to something and she just got up out of the chair and started walking around!

Over the course of the weekend, I fed Sarah with all the things she likes….maybe slipping in the odd protein powder here and there… and eating shitake mushrooms. (they are nicer tasting than their name suggests!)

God send! The only tasteless one that slipped though Sarah’s scrutiny!

I posted a relaxed and happy Sarah back to the hospital Sunday evening, ready to fight the coming week.

22/09/08 – Turn Around [ Return To Top ]

Sarah : “Whats the best thing I could say”
My reply : “that you won the lottery!?”
Sarah :”no, I’m allowed home! Because I did so well over the weekend!!”

With a quiet beaming office yelp, Sarah ready’ed herself to go home!

24/09/08 – Blood count great – go ahead for the Chemo Cycle II! [ Return To Top ]

Today they took some of Sarah’s blood again, to see if her blood levels were high enough to take the next long over due bout of chemo.

To the shock of all the nurses and doctors, Sarah had started to make a great turn around, and her blood levels were good…only just, but good enough

Within days of receiving her chemo, her Buddha belly turned round and made a progressive dash out of the door! This in turn has increased her (oh so fussy) appetite, and Sarah has and avalanche of pills to take each day while she’s at home – so along with the intravenous drips of carbo platin heres her combo for those of you who are interested :

• Capecitabine (Xeloda) 500mg = 1 at Breakfast and Dinner
• Capecitabine (Xeloda) 150mg = 2 at Breakfast and Dinner
• Sorafenib (Nexavar) 200mg = 2 at Breakfast
• Granisetron 1mg - for Sickness = 1 at Breakfast
• Dexamethasone 2mg = 2 at Breakfast and at Lunch

So we’ve had an army of help from my mother, and Sarah’s sisters, mum and dad (well lets face it, Sarah’s Dad was only there for the food!)

Following Sarah’s triumphant return, came a new regime…the local district nurse

From this point on, I’ve entered into my never ending DIY hell! With a mission to make sure that Sarah’s surroundings are just how she (and me!) wants it.

I’m going to bore the living pants off you by listing some of the things I’ve been working on so all you lucky lucky readers forgive me for being slack on the updates :-s

I’ve made a fitted cupboard from complete scratch into the corner of the room to host the vacuum cleaner and DVD/PC etc and floating shelves above it that can slide out!....I found while sanding it to fit into place…I could actually set off the downstairs neighbours house alarm! Much to Sarah’s dismay! (And to my amusement! hehe – opps!)

But its done now and looks wicked! And I couldn’t have done it without the brilliant Sander aunty Janet bought for us! (Thanks Aunty Janet!...you will get a thank you card soon!)

Sarah also picked out the tiles she wanted in the kitchen….she searched for ages, everywhere!...and finally found the teeniest, tiniest mosaic tiles she could…..myself and Sarah’s dad are still trying to grout the gits now! (and don’t think your getting out of it by not coming over Alan!...I’m saving it all for when you are about!)

Never ending!.......

And if the alarm triggering sander wasn’t enough for the neighbours, me and me mate Dave drilled, hammered and smashed a new hole into the chimney to channel the TV cables to the cabinet!

At one point I’m sure we were expecting to see our neighbours on the other side! And after 2 solid long days of hammering and chiselling, I only got 1 dirty look on Monday morning from an adjacent neighbour! Oops – so I’ve posted chocolates in there letter box to chill them out!...I just hope they spotted them and didn’t tread them in to their beige carpets THEN read the note “love from Dave and Sarah”!!!!

So hence the lack of updates.(am I forgiven yet!?)

24/11/08 – CT SCAN [ Return To Top ]

That’s it really! Pretty uneventful really! Sorry! – CT Scan, job done!

26/11/08 – CT Results & Chemo Cycle 3 [ Return To Top ]

Not great day of reporting I’m afraid. Our Chemo doc stepped in looking unusually sheepish and a little confused as Sarah’s well appearance. He did his usual belly-bongo tapping trick, then sat down to tell us the news.

That’s him…looking sheepish…spitting image!

He started off by saying that Sarah “clinically getting better”, her belly was almost back to normal, she was almost completely off the anti-sickness drugs, getting stronger and putting on weight.

See what I mean…This is Sarah showing off her curves
and new handbag whilst popping down the shops

However, he told us that the scan shows that the tumours have got worse, but on the plus side, there was no change in the tumours in the liver and the lungs were clear…this all coming from a report he was reading from the radiologist. But he couldn’t get his head around the fact that Sarah was feeling better.

He wanted to get a more detailed report by speaking with the radiographer next week, but until then, as there was no evidence that the regime was having an impact, Sarah’s chemo cycle for that day was cancelled.

But he would be exploring any trails that are available, and also advised us that as we know, there are no specific trials or treatments for FHC because of its rarity, but more commonly for HHC.

So after being booked in for next week, we left feeling kinda gutted and made our way home.

We didn’t really get time to sit down and chat about what the doc said until the evening, but when we did, I asked her how she felt (with a horrible ache at the bottom of my belly), but it was Sarah that lifted me! saying

“well you know what, we never get great news, I’m used to it and we always pull though”

…I couldn’t be prouder of her

May the waiting begin…(I love waiting…its as painless as a herd or elephants trampling over my “family jewels” in high stiletto heels!)

“Does my bum look big in this?”

27/11/08 – Reiki [ Return To Top ]

I had booked this for Sarah a while ago, with the mindset of leaving no stone unturned and if it doesn’t do any harm, then why the hell not try it. …Hippy?…yes….weird?…maybe,but we went along anyway to a local in Blackheath (and I don’t mean the pub!)

It was quite Interesting, living up to every hippy expectation you could think off! But when we went in, the lady could actually tell a bit about Sarah just from her pulse saying

“Your metal element was quite strong”

Sarah later concluded to me that she thought this might be down to the platinum based drugs she had been having!!!

I bet she gave the same “Metal Element” line to this guy too! ?

...I know!...poor joke!

Also made links to water and the colour green which Sarah has recently been having an urge for green foods and has always been particularly drawn to water….nothing to do with living in Brighton and Cornwall I’m sure!

So Sarah had an hour long treatment, and we’ve booked in for another, but she didn’t seem to get the “feeling of enlightenment” we had been told about and I was hoping for…but it was the first time…so give it a few more sessions, we’ll have her floating on air and wearing flares in no time!

To blend in better, Sarah will be wearing this :

Sarah’s Tummy started to come back almost as soon as the chemo was stopped…she’s told the Doc for his consideration, as we feel that obviously one of the drugs was having a positive impact.

Generally : she’s put on a little weight, she’s up to about 50-52KG now, so we’re slowly getting what I call her “blubba buffer” back!. She looks a lot better, feels much better than she did when things got bad. She’s also able to eat much better in bursts.

Her hair hasn’t been impacted as severely with the latest chemo, i.e. she still has it! but it has slowed its growth and Sarah has an almost halo of bright blond roots coming though that you can only catch in certain lights!– her original hair colour! And getting quite long!

04/12/08 - Quick Call [ Return To Top ]

Sarah got a message form the doc today apologising for not getting back sooner, but was at a conference in Paris (lucky for some!) about new treatments for HHC which also covered a bit of FHC. He was apparently very excited and spoke to people specifically about Sarah’s case and booked us in for Wednesday this week for a chat about the next plan of action

10/12/08 - Next Plan Of Action [ Return To Top ]

So work kindly gave me the day off to go to the consultation with Sarah. We were both feeling a little tense as we set off on a brisk December morning. We ambled up the freezing hill and were overtaken by numerous grannies! (we tried to trip them up to slow them down, but they were just too fast!)

We arrived and put in an “Information room” which pleasantly fed Sarah’s ever going urge to read everything in sight!....food shopping is such fun with Sarah…(sigh) Sarah read something about alternative treatments – one being Cow or shark cartilage via an enema….in other words…up the “eye watering” back passage!......after considerable thought and contemplation…Sarah decided not to explore that option….shame…that would of made a good You Tube video!

Sarah looks lovely…shame about the creepy looking guy next to her!

We also saw some sexy hats you can buy – so if anyone wants one….let us know! We now know just the place!

The chemo doc finally came in and told us about his conference in Paris and then broke it down to 3 choices we have :

1: Symptom control…speaks for itself!....
2: Phase 1 Clinical Trials
3: A regime that has had great results for HHC

Hmm..let us think! He told us that the clinical trials only had single figure % chance of having an impact, but they would learn something.

But as I didn’t want my girl to end up looking like this :

We decided on option 3 and we enquired about option 3 and its risks.

With a combo of 2 drugs, Bevacizumab and “An-lot-an-ime” (I have no idea how to spell the 2nd one!...can you guess?!) the symptoms were broken down to the below list :

• High blood pressure,
• Protein in urine
• Increase change of clots, and thromboses and in few cases heart attacks Venus and arterial – rare but risk
• Skin rash
• Dioraear
• Sickness

a bit like my cooking! A regime based on a report from a report written by a Melanie Thomas that had positive effect on HCC

So again we wait, this time for the doc to speak to a colleague.

We asked about Sarah’s cells, and although there was no plan to use them at the mo, some were still available and the Doc would speak with the prof to find out if there was a possibility to using them as they have no side effects.

With a bit of luck, the doc will get Sarah in before Christmas for her new treatment

So from one angle, we walked away with the reassurance that they hadn’t given up on Sarah and that they were actively looking at a plan for Sarah as she was doing well enough to take more chemo. On the flip side, we left kind of feeling that we were no closer to actually starting anything, kinda disconcerting.

So we strolled slowly home, in the cold and admired out areas Christmas decorations on the way. Looks like the Sacrificial Santa’s are making an early appearance!

So as always and once again, Sorry its taken me a while to update the site but Sarah does like to churn out the old jobs for me!

We’ll send out the mail when next update the site, but will probably be after Christmas now

Thanks for all your support and reading my drivel! And welcome to all the new readers that have stumbled across this site

Bye!

Dave & Sarah

22/12/2008, Monday : New Chemo Cycle Part 1 - 5FU and Irinotecan [ Return To Top ]

Today Sarah had 2 of the 3 drugs the docs wanted to try. We had some problems with the insurance as the 3rd drug wasn't covered, and the insurance company wouldn’t authorise the payment of the entire regime as the drug Cetuximab was apparently unlicensed.

So Sarah had the infusion of 5FU and Irinotecan for the time being, and we escalated the issues as high as we could and went home feeling frustrated.

23/12/2008, Tuesday : Our Christmas Day [ Return To Top ]

We always have our own Christmas before moving between parent’s houses.

So when Sarah woke, I had setup the lounge with white lights all around the Christmas tree and room, and as she stepped into the lounge, I kicked out some low lying fog from a fog machine I bought off ebay. And Sarah absolutely loved it!

How Kool is that!!

Half way thought the day we heard that Sarah’s company had stepped in with talks with the insurance company and used heavy influence to push the process to the very top, achieving authorisation for the regime. This touched Sarah to the point of tears that her company helped her though the anxious time and that they would do something like this for little old her!, and really made Christmas arrive early for us all.

Sarah felt ill from the other 2 drugs but some how…managed to keep my Christmas cooking down! And despite the veg being over cooked, the chicken being dry, and the roast potatoes being like blocks of charcoal, she ate it all up and told me the gravy was lovely!

Unfortunately later that afternoon we received the terrible and tragic news that Sarah’s Uncle Ray had been killed on his motor bike in a road accident. Our thoughts and hearts were with his wife Rosaria and daughters Sabrina and Francesca and their husbands, James & Barry and Ray’s grand kids…this list goes on, a much loved and fantastic man, he will be greatly missed.

24/12/2008, Wednesday : Chemo Cycle 1 Part 2 - Cetuximab [ Return To Top ]

Today we were called in early to have Sarah’s last infusion of this cycle – Cetuximab. This drug is apparently traditionally used for lower bowel cancer, and has a large number of toxic side effects.

As soon as Sarah had finished the infusion, she was sick on what ever food she had already had that day, but we expected that (what a waste of a good crusty role!).

We dashed back home, picked up our gear, and headed to her parents in Goring-by-Sea which what about a 2 hour drive.

Sarah suffered with sickness quite a bit on the journey, poor thing, and hadn’t even managed to hold down much water. As soon as she got to her parents house, she was straight to bed.

The on-call doc was called out (funny that! given his title!), she was given an injection of Cyclazine to help with her sickness, as she was unable to hold in any of the drugs she had in tablet form.

25/12/2008, Thursday : Xmas day sickness [ Return To Top ]

Sarah’s sickness subsided quite a bit, but she was still having trouble eating and drinking. The On-call-doc was called out in the afternoon to give her another jab, But Sarah spent pretty much most of the day sleeping, suffering from a headache down the top centre of her head, which we assumed was due to dehydration as she had pretty much next to no fluids for the last few days.

26/12/2008, Friday : Boxing Day Drama [ Return To Top ]

We started the morning by being woken up by Sarah’s dad who had found a book of quiz questions! and was challenging us for answers (bit harsh enh!)…Sarah beat me hands down on all he questions!...(that’s because there were no computer geek questions!)

We left Sarah to sleep while we had breakfast, with the plan being to get her back to London Bridge that day to get some IV fluids in her and generally checked out.

But when I checked on her, Sarah seemed quite agitated, so we decided to call 999 and get an ambulance crew out in the hope of getting her some fluids. They arrived and we got Sarah up and dressed.

We started to notice that Sarah was becoming increasingly confused.

She refused any help to the ambulance and insisted on wobbling down the stairs on her own 2 feet (that’s my girl!).

I slip streamed the ambulance to Worthing hospital as Sarah's mum travelled with her. When she arrived, she was very confused. Me, being the meany I am started to take advantage of this and told her that we had a pet giraffe in our house, 2 new kittens and that there were actually 10 days in every week which she agreed to!...damn I wish I filmed that one!...and she thought I was the ambulance driver!

Also, while we all waited, we noticed that she was shaking a lot all over, almost like she was too weak to keep control, with her lips trembling and facial muscles twitching. I kinda put this down to dehydration and an extreme lack of energy as it had been a couple of days now since she last ate something and kept it down.

Sarah was sat in a bed in A&E where she seemed to fall into an incoherent sleep from which we seemed unable to wake her.

About 2 hours passed and still no docs had arrived due to a shortage (Boxing Day). Then Sarah sat up, but didn’t seem to be able to focus on anything, she started trying to get out of the bed screaming though gritted teeth and we could just about make out she was saying “lets go, lets go”

She started to struggle with me and her Dad as we tried to keep her on the bed (a distressing experience for all of us).

She was then sedated and moved to a teeny tiny room where she put up a couple of more struggles. At one point there were 3 nurses trying to perform a procedure and even with me pinning her down to the bed, she still valiantly fought them all off with some clever kung fu kicking legs!. Good girl!...although it wasn’t helping at all, I was kind of proud of her for having the power and fight in her to fend them all off!

Eventually another doctor came down from the Intensive Treatment Unit (ITU) and said they were considering taking Sarah into intensive care as for the first time in a year, they had a spare bed!

They tested Sarah’s knee reflex and elbow, also ran a plastic stick down the base of her foot…all proved that Sarah’s reflexes were fine. They wanted to do a CT scan on Sarah’s head to look for any potential problems, if a standard scan didn’t bring up anything, then they wanted to perform a 2nd scan with dye

I went down to the CT scanner with her, they took the first Scan and couldn’t see much wrong, but at the moment of administering the dye, all the doctors were called away to attend another emergency, so it never happened and she was wheeled back.

She was then whisked away to intensive care and we were told to wait in a rather luxurious waiting room with tea facilities, recline-able chairs and a shower! (Bonus time!)

When we eventually got to see Sarah in the ITU, she was hooked up to a “breathing machine” to assist her and to prevent any complication – again – quite hard to see my darling all wired up to pipes and tubes, but we took comfort that they were helping her and she wasn’t in any distress, and its not like we hadn’t seen this kind of thing before.

They then dropped the sedation to wake Sarah up to review her. When they did, her eyes opened slightly, but she was still unresponsive, at which point they turned to me and the parents, and told us to return to the waiting room while they did tests.

After what seemed to be the longest day…I really don’t know how Sarah’s dad is still standing after losing his brother just a few days earlier, and the day didnt end there as we drifted thought the night to the next day below...

27/12/08, Saturday : 12:00am roller coaster waiting in ITU [ Return To Top ]

The ITU doc then came in and advised us that Sarah was very sick, and they wanted to perform the 2nd CT scan, but the possibilities at that point could be ;

• A bleed on the brain
• A blood clot in the brain
• Brain swelling
• Infection of the brain
• Metastasise on the brain (cancer/tumor)

None of which were good, but on the plus side, because she was in the ITU, she was getting such close attention that they noticed that the sedation was suppressing symptoms which were quite critical to Sarah’s analysis, so in other words, it was good that they moved her when they did. So we anxiously waited in the room for further news with each passing minute feeling like hours and days!

About 02:00am the Doc came back in after performing the 2nd CT scan on Sarah, he told us that although he was not trained to read CT scans, there looked like no bleeds or clots on Sarah’s brain which gave us a massive sigh of relieve – but he did re-iterate that he was not trained, and that he was awaiting the radiologists results.

But to get all this done, the docs actually woke someone up at home and made them come in and warm up the CT scanner just for Sarah, perfect service from the NHS!

About another hour passed and the doc came back in with info on the radiologist’s results. The Scan indicated that Sarah had a small blood clot on the brain, in the centre vein down the middle of her head, where Sarah had been complaining of a headache.

The next step was to determine what to do next and the doc had made contact with neurologists in another Hospital in Haywards Heath.

We were allowed to sit with Sarah as she had a flurry of nurses taking excellent care of her every possible need, even covering her for needs she didn’t even have yet!

As they were unable to determine exactly what was wrong with her, they treated her for everything they could, heperine (blood thinning) for clots, and anti-bionics for pretty much everything under the sun! She was clearly in safe hands.

05:00am and 06:00am rolled passed, and the nurses even provided me with a pillow to rest my head on the bed while I sat with Sarah with her parents!....AND we got provided drinks!

By 07:00am Sarah was stable, so we decided to dash back to the house to steel some sleep. And we tag teamed cover of Sarah with her sister Emma who sat with Sarah while we sorted ourselves out.

It got to about 11:30am and none of us could sleep, then we heard that Sarah was being moved to Haywards Heath, Hurstwood Park Neurological centre, so in the car we jumped. As we approached the hospital we saw an ambulance with its lights going that tailed us all the way to the entrance of the Neurological centre…and out rolled my Sarah! Perfect timing! (Unusually punctual for her!)

There she was admitted to the ITU.

27/12/08 to 28/12/08 Long weekend [ Return To Top ]

The weekend was pretty slow, due to the holiday period; the hospital seemed to be orientated to maintaining stability for Sarah as there were very little doctors around to advise us of anything. So we spent a lot of the time in the dark (very frustrating…and I’m not talking about a lack of light bulbs!) and bugging the hell out of the nurses for any info we could scrape out of them (not much)

They kept her sedated through out, relieving her of any distress or discomfort, but visiting was much more restricted and stringent….only 2 people at a time :-(

29/12/08, Monday : One Step forward [ Return To Top ]

What was a pretty much dead and limping along department turned into a buzzing life of doctors and nurses everywhere today!

Sarah had an ECG test in the morning (measure brain activity), and taken out of sedation. It became apparent to the docs here that Sarah is/has been having small seizures.

A Lumbar Puncture test was taken…that’s where they drain fluid from the base of your spine, this apparently is a very good way to tell if she has an infection of any kind. They also took bloods for assessment.

And to round it all off, they did a detailed 3D MRI scan of her brain.After a long day, we were called into the office with Sarah's Neurologist, who in short, told us:

• Her bloods were very good, bar slightly raised levels of ammonium which weren’t a worry
• Her Lumbar Puncture came back with no infections
• Her MRI showed no evidence of any brain/head issues whatsoever, no clots, no swelling, no bleeds, no damage….nothing….not a sausage (I think finding a sausage in there would be a great cause for concern!)

So…they are left scratching their heads! They are treating Sarah for any fungal, bacterial or viral infections and will continue every day to wake her up.

So from this we can only pull positive thoughts from…the fact that Sarah’s in tip top condition medically, and that it’s a massive relief that she’s not suffered any damage to her brain during all this….so when Sarah decides to pull her finger out and wake up…we’ll get back the same beautiful smile we last saw

30/12/08, Tuesday : Another small step forward [ Return To Top ]

They tried to wake Sarah again this morning by stopping the sedative. Apparently she had a positive response as she reached for the air tube to pull it out, a perfectly natural and expected reaction. She didn’t open her eyes, and did become a bit hot and flustered. So they re-sedated her ready for another go later at 15:00

14:00 soon rolled around which was when the sedation was stopped, we stepped in to say hello. Sarah’s efforts have been exemplary as usual, she squeezed our hands and moved her legs. She managed to open her eyes a little and although it looks like she’s still struggling to focus on anything, I felt quite sure she moved her head to take a look at us. She’s doing well and making me proud, I just hope she can hear and see us, and knows she has us right by her side.

We were then chucked out while they moved Sarah out to a clean room and performed another ECG test on her brain activity (I think if they tap into the full power of Sarah’s brain, it’ll blow up their machine!)

31/12/08, Wednesday : Lots of Steps forward in the right direction! [ Return To Top ]

Today started great. When we arrived, the nurse advised us that she was off of the ventilation machine, breathing well on her own and off the sedation! Fantastic!

We were soon in with Sarah, proud as punch seeing her strip away the tubes day by day. She was a little flushed and uncomfortable looking, and was groaning a bit.

They administered her morphine patch and some ora-morph and Sarah soon settled down and looked much more comfortable.

We went in, in the afternoon, and yet more progress! Sarah’s eyes were slightly open, and as she heard each of our voices, she opened her eyes much wider and tried to look at us which was so refreshing. She even turned her head when I called her which was a massive improvement and her pupils are reacting to the old “torch in the eye” test

But I think all the calling and chatting to her wore her out, her eyelids looked like they were made from lead as she tried to keep them open, and she was unable to conjure up the power to squeeze hands on demand.

About 17:30 they took off the oxygen mask and she is not fully breathing completely unassisted…..this girl is non-stop and giving me far too much to write about!

Later that eve we went in, and Sarah was already becoming more responsive, looking comfortable and opening her eyes to our voices and at one point when looking at her dad, she mouthed the word "dad"....she truly is a miracle

As we left, I wished her happy new year, and she opened her eyes from her slumber and muttered something, but she heard me and responded!....the only way is up! and a perfect way to end the day...there is always a step forward with Sarah

So watch this space, I’ll churn out the updates as I can, I’m moving houses where ever I can at the moment to be close, so an internet connection is not guaranteed - so non-subscribers – sign up as you all know updates can be sporadic.

Happy new year from us both – may 2009 be a brighter year

01/01/09, Thursday : New Year Highs and Lows [ Return To Top ]

We arrived about 10:00 this morning. I buzzed the door to let the nurses know we had arrived and ready for visiting when she was ready.

The 2 nurses opened the door and looked at me saying “how are you”, “fine” I replied, “expecting great things today…how’s she doing?”

They replied “Sarah is amazing, she really is, she able to talk to us now, and even Sarah ‘hello Nathalie’, she’s doing so well, come in”

My face nearly broke in half with a smile that covered may face from one ear to the other as I welled up like a sissy girl, I raced into her room to see my miracle girl

There she was, hanging out, turned as we walked in “Hello, I’m really confused! The nurses tell me it’s New Year?!”

So so fantastic to see my darling again. I told her I missed her, and she replied “I missed you too…..well…….not really cos I’ve just been asleep!”

Then I told her how proud of her I was, and how well she had done. She just shrugged her shoulders with a kind of “enh” expression and said “we I haven’t done much!, I’ve just been sleeping!”

We left her to rest and returned later in the afternoon. Sarah seemed very tired, and was struggling to concentrate on what she was talking about, but we got a few smiles and laughs out of her. But her main focus was to get the hell out of there as being in hospital made her feel fed up.

We left her to rest again, but when we returned, Sarah’s condition went down hill a little further, and she was unable to communicate with us other than “ok” and was getting frustrated. I chilled her out and told her to rest, and reassured her that she was ok and that we are all routing for her, one step at a time darling.

She took comfort and looked more relaxed. So although gutting after this mornings amazing achievement, myself and everyone mustn’t forget she is so much better than yesterday….one step at a time…tomorrow, im sure she’ll have another trick up her sleeve….maybe some dancing on the bed!

What a roller coaster of a day, but the highs out-weigh the lows.

We called the hospital about 22:50, and Sarah as unfortuantly become unresponsive again, but still breathing for her self. She will be going for another CT scan which we will get the results at 24:00

COME ON SARAH! YOU CAN DO IT! at least we know she can get better, its just a matter of waiting.

Thanks to all for all the supportive messages, and sorry I cant reply - I have zero reception everywhere I go in the damn place! even in the eve in the house I'm staying at! quite frustrating

02/01/09, Friday : Another Step Forward [ Return To Top ]

About 00:05 we called for the CT results, and they indicated that there was nothing going wrong in hear head, and that they were happy with her condition.

I was dropped off at the hospital today around 09:00 am by Sarah’s parents, as they were attending the funeral of Uncle Ray today.

I managed to get in to say a quick hello to her, but was under STRICT instruction not to talk to her as it would wear her out too much and distress her.

Like a ninja, I stepped into the room, Sarah turned her head and said

“oh hello!”

with a big lovely smile on her face….she’s back!

I was then chucked out, so I went to find some food and got lost in the hospital! Its like a maze in that place! I approached a doctor looking guys and before I even said anything the turn and said “I wouldn’t ask me!”, so I just blurted out “I JUST WANT TO GET OUT!” to which he showed me….see! you DO know the answer…muppet!

When I finally broke back in to the room with Sarah, myself and my mum I spent the afternoon just chilling with her very quietly, but Sarah struggled to sleep despite being very tired, and we only talked to her when Sarah expressed any confusion, worry or concern, and gave her comfort. Her parents came in later in the afternoon and did pretty much the same thing.

Sarah’s still feeling confused, but little bits of her are coming back every day. Today there were a lot of smiles mixed with frustration, but we’re all backing her up, shes not fully out of the woods but she's doing very well.

There’s talk about moving her to a normal ward, but the docs want to keep her in the ITU for as long as possible to keep a close eye on her. They still don’t have any answers to what the problem actually is/was, but what ever has caused this, she’s recovering from it.

Keep you posted

Dave

03/01/09, Friday : Leaps and Amazing Bounds! [ Return To Top ]

This morning I arrived, rang the bell to get in, only to be told that Sarah had been moved! Apparently the docs decided that she was doing so well, they smuggled her during the night to another more general ward, like an illegal immigrant crossing the border between “not so well” land, and “Much better” land!

So I dashed down to the ward and was greeted but the biggest, most lovely smile! Sarah instantly leapt into conversation, asked me if the nurses knew about all her medication etc. Also Sarah was getting a bit confused as she is starting to recall events of the last week, and getting them mixed up while she tries to sleep.

Something I left out of yesterdays update was: When I stepped into the room, I said to Sarah “give us a snog!” and she looked at me as if I was completely mad! And actually politely refused me a kiss!

Then as I got back in for the first official visiting hours, Sarah very politely turned to me and said

“I don’t mean to be rude, but I don’t like you, and I don’t want you here!”

To which I replied, “oh, ok Darling, do you want me to go?” then something clicked in her and she realised she had been confused and spent the next 3 hours apologising to me! Hehehe damn right too!

Later on she also told me that she got all confused when I asked for a snog as well, and thought I was some random nurse that came in and asked for a kiss!

Today Sarah spent a lot of the day laughing about her confusion of the previous day, and it was becoming clear that I really REALLY needed to get her glasses from the car! As she’s as blind as a bat without them!

Yep! Just like that!...and thats on a good day!

Sarah spent time making sense of the last few days, and it doesn’t help that she has hourly checks on her pupils…imagine being in a deep sleep and someone ripping your eye lids open and shining a touch in your eye!...then getting a bombardment of questions like :

• Who’s the Priminister?
• What year is it?
• Whats your name
• Where are you?

Hell I don’t even know where I am! I’m just getting driven about at the mo! This sounds more like an interrogation technique from the TV show 24! No wonder she gets confused…next they’ll be tying her hands up, then dunking and holding her head under water until they squeeze enemy positions and tactics out of her!

(ahem…) Anyway, Sarah’s much much more coherent today, massive change today, chatting away. And once we helped her piece her memories together and settle her worries, she happily slept soundly though the entire visiting time…much to her parent delight!

We were chucked out and eagerly returned at 19:00 to 20:30, Sarah was well rested and doing even better that before! I really can’t believe this girl! She tires quickly, but you can tell that when the lead eye lids make an appearance.

Sarah’s mum and I have managed to bribe a couple of extra hours of visiting time for tomorrow… with the power of chocolates! ;-) else visiting doesn’t start until 15:00 to 17:00 which is rubbish!

On-wards and upwards

I will keep you posted with any major changes now (like, if Sarah eventually gives me that Kiss ;-) )

Thanks to all for all the text messages and e-mails of support, really appreciate it. I still seem to be stuck in a world that has no mobile signal at the mo, so apologies to those of you I haven’t txt back, I have to press my face against a window at a particular 37 degree angle to simply send out messages!...driving me nuts!

Pic of all the visitors trying to get that mobile signal!

04/01/09, Sunday : Back and better than before! [ Return To Top ]

After having the hottest and coldest shower in the universe (Thanks for putting the washing on while I had a shower Christine!?), we got in to see Sarah as the pre-agreed bonus time of 13:00 instead of 15:00. Sarah was fast asleep but soon woke.

The docs are still scratching their heads and pretty much clueless as to what’s been actually going on with Sarah, but she’s recovering extraordinarily well (I expect nothing less!)

She felt rather sick in the night. But she’s on a constant drip of what looks like baby food for nutrition, so she’s being well looked after.

The nurses here are great, but it seems Sarah always seems to have a complete crazy nutter orbiting her where ever she goes (Like at home for example!). At the moment, her nutty neighbour is this old lady that keeps poxy well walking up and down the ward, going right up to Sarah’s bed…if she got any closer, Sarah would be complaining she was steeling the duvet!

It’s annoying me slightly….when I say slightly, I probably mean HELL OF A LOT! to the point of me breaking out my “1 inch uber ninja punch” and getting kung-fu stylie! Only because my poor girl needs her rest, and it doesn’t help waking up to a loopy face staring at her randomly saying things like :

“This has happened twice before and I’m fed up”
or
“no ones going to fiddle with my stuff today are they?”

Madam, no they are not! Shut the heck up, back the heck up and sit down!....ok, I’ve had my protective rant….I’ll get on with it now! Sorry.

Ok, so Sarah’s looking fabulous today, even better than yesterday, she’s pretty much with it now, and is pretty much un-confused…probably helped that I got her glasses for her and she can see I’m not a random nurse trying to kiss her!

They’ve also fitted her with air assisted leg massagers for her legs to prevent any DVT’s. She’s still very tired and we’re encouraging her to sleep as much as we can (while beating of the crazy old lady next door with a stick)

But Sarah being Sarah, loves to fight the sleep and have a chat, and we told her all about how she fought off nurses, and called the nurses stupid when she was confused and out of it, she finds it strangely entertaining as she doesn’t remember a thing about it.

She’s nil by mouth until tomorrow, when she will be assisted by the doctors and Tuesday the registrars are back. So myself and her parents are enjoying choccy bars and drinks around her bed, safely knowing that Sarah wont want/have any!...all while I show her pictures of the Christmas dinner she missed and chatting about Yorkshire puddings! Hehehe…so watch this space.

05/01/09, Monday : Slight Hiccup [ Return To Top ]

Apologies for not updating the site sooner, straight after visiting, I set off home back to Blackheath to collect stuff for Sarah and off load stuff from the car.

Back to work for me and Alan today, while Christine found she loves it in the hospital waiting room so much, she organised her life around it (sucker!)

We had a report in the morning that Sarah was doing ok, and had not been sick in the night, which was great news.

But then Sarah’s sister Emma called the hospital to get Sarah’s orders of the day, only to be told that Sarah was unable to speak any more! (Thanks for telling us!), but she was ok, responding and not in any distress.

Both Alan and I started to get twitchy at work as Christine and Emma sweated it out at the hospital.

But about 15:00, we were told that the nurses were concerned about Sarah’s breathing, and they quickly scheduled a tracheotomy, which is an incision in the bottom of her neck, and a pipe inserted to help her breath more easily.

“?!?!?!?!?!?!?!!?” I think expresses everyone’s thoughts best, she was perfect yesterday! But the nurses are not worried about this as Sarah is very stable and is breathing on her own fine.

She looks really well, and shes back in ITU for close observation, but at this point we have to remember that :

a) she’s been checked for everything harmful under the sun, and she has a clean bill of health
b) She was in a much worse situation when we started this little trip
c) We KNOW she can recover from this, and has twice before already!
d) ….this is Sarah we’re talking about...come on!

So although I hate the thought of her having to go though ANY procedure, it’s much more comfortable for her that a tube down her neck. So we’re back on the waiting game for Sarah to start responding and chatting once again….but she’ll do it

She’s in good hands and in the right place. There was passing mention that she could be moved to Kings College hospital, and she’s due to blood tests tomorrow to double treble check things are all ok

so all in all, a bit of an over-the-top way to get away from that nut case in the ward....but very understandable

I’ll update as and when I can, keep those positive vibes flowing her way

06/01/09, Tuesday : She's Back! This time with a Tracheotomy [ Return To Top ]

Today Sarah woke in ITU and started responding….see! told you! Christine (aka Vicar mum) called to give me the amazing news and My mum was there to see yet another astounding feet!

So soon she was out of ITU and this time placed in the men’s ward, some may think that’s a bad thing, but when you compare a bunch of old polite dodgery men to a completely nutty annoying woman in the next ward….I think she gota good deal.

What I didn’t quite expect is that Sarah can’t talk with the tracheotomy! And what was worse is that Sarah didn’t understand this either. So she had a bit of a struggle getting messages across, but once we worked out what she was asking and told her what was going on, she settled down, but not with out frustration.

At the end of visiting, I remembered something she said when she was in the other ward, asking if I could stay the night. As Christine had wangled flexible visiting times, I decided to go home, and come back for the evening.

Eventually Sarah and I started communicating better, and she soon settled down to sleep. I couldn’t stand the thought of her waking up without me there, so I stayed with her though out the night. The nurses were great, they rolled me into a comfy chair and put blankets on me! How wicked is that! AND I got tea and toast in the morning!....free!

Sarah had a good night, nutrition went in, anti sickness went in, and she was able to keep it all down.

FYI : she’s unable to speak because the Tracheotomy tube is just below the vocal cords, so the air escapes before she can make a sound. (Not very technical, but that’s what I think is happening). massivly frustrating for Sarah.

About 06:30 a well rested Sarah woke with a big smile which was lovely to see, Christine came in at 09:30 to take over and I went off to work.

07/01/09, Wednesday : Getting Better [ Return To Top ]

Sarah’s been able to communicate with her mum though out the day, and she’s gaining much better control or her hands as she writes stuff down (in joined up writing no less!!!....there's just no bar raised too high for this girl!). She’s getting more and more “with it” and actually telling us that she’s worried the Nurses think she’s mad like the rest of the patients in there!

She’s looking great and improving once again. There’s more chat about moving her to Kings Hospital in London…but until it happens, I’m fed up with hearing that same broken record.

She had another MRI scan to double check things, and shes all good in the head side of things.

We’ve been heavily encouraging Sarah to sleep and rest, as the more she does, the better she gets. But right now, all she want to do it go home. She's quickly learnt to "mouth" clearly, and we've all rapidly learnt to lip read! (or she really really tells us off with her eyes!)

So I left a great looking Sarah today, I just hope she gets the rest she needs and the events of the last few weeks are behind us, fingers crossed and touch wood.

Right now we’re all very proud of her. Onwards and upwards.

08/01/09, Thursday : She's Doing So Fantastic! [ Return To Top ]

The Docs came in today to see Sarah and her mum, and were apparently much up beat about Sarah’s condition (finally!) The Doc advised that the MRI Scan has revealed a very slight inflammation in the brain, was this apparently wasn’t surprising considering the chemicals in her body, her ammonia we up, but this could be normal for Sarah for all they knew.

When I finally got in to see Sarah after work, I was greeted with a beaming smile and an extremely well looking Sarah. We were able to communicate almost flawlessly as I lip read.

Sarah was disappointed as she missed the physio that day and wanted to have a walk around!...she then started saying to me,

“I want to start walking so I can go to Bluewater!!!!!! “

I can’t believe this girl is already planning HER next shopping trip, and MY next day of hell! Heheheheh, lovely to have her back.

She’s looking even brighter today and chatting away (mouthing). At one point she started to get a bit tired, and as we tried to settle her down, she kept saying “and one more thing….”…..unstoppable that girl!

So she’s getting so so much better, back on track. The docs are going to keep her in Haywards Heath until the weekend when they will assess her situation and work out what step to take next. And the same applies to the tracheotomy, but Sarah isn’t letting that stop her giving me orders!

So this is no excuse to slack on the positive vibes everyone, keep em beaming out, at least until I get her home where she belongs, and longs to be.

I hope you’re all looking forward to the good news tomorrow! I know I am…..oh wait, I plan to stay the night with Sarah if I can tomorrow, so you’ll have to have a cliff hanger!

So to conclude this saga, the problem turned out to simply be……….

09/01/09 to 11/01/09 : Lip reading Charlie Chaplin Days [ Return To Top ]

Ok, So on Friday when me ‘n’ the dad arrived at the ward, we stepped in only to find that either Sarah had turned into a wrinkly old man (not impossible given the drugs she’s had), OR she had been moved! so after stroking and holding an old mans hand, we decided it wasn’t Sarah and tracked down a nurse to find out where she was, only to find that she had been moved back to the female ward…..next to the crazy lady again!

“AAAHHH” was pretty much my instant reaction and the nurse advised that Sarah had expressed a similar one, so they were going to see what they could do.

Before we knew it, the Crazy lady had been carted away to another ward so that Sarah felt more comfortable. I managed to get away with staying the night with Sarah on the ward as she was telling me the nights were so long on the ward when she was on her own.

So while Sarah had, and in her own words, “the best nights sleep ever” with me by her side.. I, on the other hand had the worst! Starting off on 2 hard, plastic chairs with my head on the bed, then after all my limbs went dead, I slept on the floor! Then about 05:00 Sarah was woken for observation tests, she turned to me wondering where the heck I was, only to have a head pop up from the floor! At that point, she shuffled over and gave me a ledge of bed to sleep on, and away I went!

Saturday was quite busy for Sarah, with her parents visiting in the morning, here sister in the afternoon, and my mum and 2 of her friends that live locally in the early evening….Sarah chatted her way through the day non-stop….I say chat….I mean mimed!

In the evening, in came a new patient….crazy lady number 2!...and oh my god is this a nut house!! this one seemed perfectly sane when she came in, but as soon as the long awaited bed time came, this woman just would not shut up. She had the nurses chasing her everywhere around the hospital, she called pretty much everyone she knows on her mobile phone, and made a different arrangement with 20 different people to meet her in different places!

That went on until about 2 am, then she chased the nurses around saying “have you filled in the time sheets” or “can you get the thing in ASAP, as we need to do the thing”.

Her profession went from a cook, to solicitor, driving instructor, Scout Master, Working the the air port, managing director of a housing association….what’s that film?.....’Catch me if you can’, with that amount of blag, she must of made a great manager! ;-)

About 05:30 I made the mistake of stepping out while Sarah had obs, and was cornered by her saying

“can you get those time sheets in first thing tomorrow”
to which I replied
“yeah, I’ve already done them!”

Which really seemed to please her!...didn’t buy us any peace and quiet though, but it made Sarah laugh that I jumped in to her crazy fantasy world!.

So a bit of a rough nights sleep into Sunday. But Sarah woke and has been laughing her head off to things the woman was saying, rolling her eyes in amusement, and generally seemed to have fun with the entertainment she had. The poor nurses were knackered though.

Then they came up with the idea. The nurses called out to Crazy Lady Number 2 saying

“we have someone for you to chat to”

….yes…that right!.....CRAZY LADY NUMNER 1!!!!!!!!!! Genius idea! Sarah spent about 30 minutes pissing her self over that one! She thought it was great! And it gave us some peace finally

Then about 10:00 her doctor came round to have a word with Sarah, and told her that it had been 5 days since she had any problems, so the tracheotomy could come out early next week! Meaning she would be able to speak properly again! And also that she only had to go to Kings hospital if they wanted to see her!!! Else she could go home once she has gained her strength back and becomes fully mobile again!! GREAT NEWS!, I really really can't wait to get her home, its nearing 3 weeks since we were last there!

So Sarah has been practicing marching on the spot, sitting up and sitting down every half hour ever since! This girl has unbelievably unstoppable determination! And will not rest until she has all her control back! (over me!)

She’s spent the day joking around and generally beaming her smile around with nurses coming up to her saying “oh my gosh, you look great! You’re doing really well”. And I have to put a shout out to the nurses in this place, they are amazing! very attentive, polite and kind. They’ve really turned my opinion on the NHS. So if you are ever going mad in the head, then this is the place to be!

And get this – 1st night I had there, uncomfortable, 2nd night the nurses found me an electronic reclinable chair and moved it next to Sarah’s bed! So I had some hope of a good nights sleep – but then we had a mental night of madness with the crazy lady 2…now that I’m not staying, they’ve only gone and moved her to another ward!! Typical! Sods law!

Let's see what surprises Sarah has for us tomorrow!

Thanks for reading my waffle!

12/01/09 to 13/01/09 : Even more progress!! [ Return To Top ]

Monday saw the removal of the blue tube that was blowing oxygen in to her tracky as she was breathing so well on her own.

What she had before

This saw the fixture of a “Swiss Nose”! which by the looks of things, acts as a filter for Sarah breathing though the tube in her neck :

This was just another step forward for her getting the thing removed and being able to talk again.

On Tuesday Sarah was extremely tired due to a bad nights sleep, but had her sister Lizzy come down and me mum. So by the time I got there Sarah was wasted…Doh!

Sarah had quite a busy day, she managed to get a lot of basic control back over her life as the tubes are coming out, and she is no doubt trying to run faster than she ever could to recovery

She also had her “cuff” deflated, which is some sort of air thing inside her neck that helps hold the tracky in place…I think…I can’t give a proper explanation as I never see a doctor in this place! But it basically means that they were weaning Sarah’s body off of the Tracheotomy, and that she had spend a large part of the day breathing totally of her own accord!

ah ha! i found a good diagram! have a look!

Again! Fantastic progress, but Sarah being Sarah isn’t quite content with the speed of her progress and was a little tired and fed up. But I soon cracked a smile when I mentioned that just over a week ago; she couldn’t even blink on command!

So she’s doing extremely well today, and as ever, I’m very proud of her, as we all are. And the nurses were saying that to Sarah, things must be very frustrating and slow moving, but to them, she is progressing at an incredible pace!!! That’s my girl!

Anyway, I know there’s a lot of people wanting to visit Sarah, and given half a chance, she’d say yes to each and every one of you until she burnt out!, so she’s pretty much booked up to the end of the week but there was bit of talk again about her going to Kings hospital to get checked out, so if you book a slot, expect last minute changes! – let me know

Thanks for all the lovely messages of support, Sarah thrives off of them.

Anyway – ta ta for now

14/01/09 to 18/01/09 : Amazed Nurses & Kings Hospital!! [ Return To Top ]

Wednesday, a pretty static day for Sarah, she didn’t get to see the Speech and Language Therapist, or the physio and it wasn’t until she started to remind the nurses of this, that the nurses decided to let Sarah test herself allowed her to walk up and down the corridor!

Massively impressive, and she showed nothing but determination to get back up on feet.

Thursday was another fantastic day for Sarah. About 14:00 I got a call from Christine’s mobile, with her simply saying

“I have someone that wants to talk to you”

I was then passed over to………………..gulp…………………(who is it)………………………SARAH!!!!!!!!

To my utter delight it was the lovely Sarah! She told me that the Speech and Language Therapist deflated the cuff in round her tracky so that air could travel though her vocal cords, then fitted a “temporary voice box” to her tracky, and she not only mastered it in minutes, but wow’ed the nurses with her leaps and bounds.

The conversation was over all too quick as Sarah was getting tired after ringing round to me and her Dad and generally laughing general, (gassing too much I bet!) but it was lovely to hear her voice all the same. To Sarah, her voice didn’t sound like her own, but we could tell it was her….she just sounded like the nurses had trapped her in a small box a made her voice husky!

The voice box!

Sarah also had an MRI scan on her brain to determine if her temporary insanity was hereditary and to check that the everything was ok up stairs!

Sarah was also taught some exercises to do by the physio, she was released from her tubes of food and water and showed off what she could do when unleashed up and down the ward corridor!

That's her there!

Friday : Today I was in a meeting around 10:00 when my mobile phone started ringing. I had a cheeky look and it was Sarah! I've never wanted to answer a call so much! And the phone practically burnt though my leg as I ushered the meeting along in any way I could.

I gave her a call about 10 minutes later and we just laughed with excitement like a couple of kids who had eaten 45 toffee apples while on laughing gas at a fun fair!. Obviously the Speech and Language Therapist had popped along and put the voice box on, enabling her to speak. We didn’t get to chat long as she was still learning to co-ordinate breathing and talking…but so lovely to hear her voice, and we said good bye as her mum arrived for her morning shift!

About 16:30 I got a call from Christine giving me the gob smacking news that Sarah was being taken in an ambulance taken to Kings college Hospital! Dawson ward!....we love Dawson Ward!...

Aparently the nurses in Haywards Heath had become so attached to Sarah that they were all in tears when she had to go!!....my god THAT'S proper nursing!

I arrived after work, ahead of Sarah with Alan in pursuit, and was please to find a nice private room had been allocated for Sarah. She soon arrived with mother in tow and quickly settled in... then we had to go though the usual transfer pain of...."so.....tell me your medical history!"

.............AAAAAAAAAAAAAAAHHHHHHHHHHH

We’ve got her saga down to an express 20 minutes!...but the nurses can't write that fast! sigh!

So we're back in London! Finally!....only took her 21 days of lazing around in a bed and ordering people around!...which she continue to do!....being in London makes no difference to that! hehehe

Later that evening, Sarah text me to say that then the nurses replaced a plaster, her nose tube she had for food fell out by accident! DOH!.. poor girl hadn't had anything to eat since mid day (if you can call it eating!..."tubed" maybe).

Big congrats to Mike and Julie having little baby Isabella – read the mail today, we’re both so thrilled for you! Great stuff!

Saturday, I broke in the ward around 13:00 (good old hanging around the door waiting for it to open!) only to find Sarah STILL hadn't had any food tubed into her! but at least the nose tube was back in. Poor Sarah was "Starvin' Marvin" and because there was no written prescription, the nurses reduced her intake by two thirds!!! from 90ml/per hour of pappy looking baby mush food, to 30ml/ph!! Sarah was so weak and knackered!

So I arrived to a fed up Sarah, but I soon turned her mood around after a few tugs at the nose tube, and bashing of her tracky tube with bear hugs! (joke....there were no bears involved!) but we were soon laughing our pants off about how I am possibly the worst person in the universe to have around in hospital!

We had a pretty easy day, chatting, snoozing and watching TV. Bugger all happened today, no docs, no deflation of the cuff so Sarah could practice breathing and talking...nothing!....not a sausage! which frustrated Sarah as she was steaming along in Haywards Heath Hospital. It's so great to go to such quality nursing.... much has improved here at Kings, Sarah only has to wait 15 minutes when she presses her nurse buzzer!...a bit pot luck in this place! Plus we’ve been spoilt in the other place.

21:00 soon came round, and the nurses told me I wasn't allowed to stay in respect to another family in the ward who had a very sick relative (fair enough). Then Sarah seemed to be ushering me out the door, so I said:

"Are you trying to get rid of me?!"

To which she replied:

"Well I might be missing something really good on TV!!!"

with a cheeky but half serious smile on her face!! Which I then later found out was “Snakes on a Plane!”….what a rubbish film!

Sunday : I performed another slip stream entry to the ward at about 12:00, then her parents rang, so I answered AS Sarah, giving them breathing noises down the phone and tapping one tap for yes and two for no to questions they asked… Sarah was in stitches! But our laughing gave us away!

Nothing much happened today other than we chatted, and Sarah is looking her usual fantastic self. She’s got her strength back so we went for a walk, and in her own words, she said (mouthed!)“ This is well easy!” as she went for a 2nd lap around the wards!

She’s started to do some exercise to build up her strength, and her snappy humour came back as her parents arrived later in the afternoon.

We didn’t expect much to happen over the weekend, but NOTHING really happens at Kings during the weekend! On Tuesday/Wednesday should be the day the Prof comes round, and the chemo Doc, then we can determine the next steps. We’re hoping in the meantime, Sarah can have the tracky removed.

Text / Mail me if you want to visit her - although I can never tell how long she's going to be anywhere!

I’ll keep ya’ll posted!

Bye bye.

19/01/09 to 25/01/09 : She Speaks Once Again!! [ Return To Top ]

Ok, so I've been a bit tired to keep up with the updates recently, so this one will be the highlights condensed I'm afraid, plus I think I’ve spammed all the subscribers with update mails recently anyway!

Monday

Sarah experienced a bit of confusion today with the nurses regarding her tracky. One tried to suck up any chest secretions and saliva from the tube without turning the suction device on! (better off with a straw I think!) Another tried to do the same suction without taking off the Swedish Nose!! i.e. trying to suck the secretions though the filter! DOH!.....Another nurse also apparently tried to wheel her down to theatre for a double leg and double arm amputation!!! (that last one was a joke by the way!...the other 2 were real!! Gulp).

Sarah also played musical beds and was moved to a ward and next to a toilet that wasn’t working!....Not a great idea when giving a patient laxatives to manage ammonia levels (high levels of ammonia causes confusion and disorientation interestingly enough). She was then moved to another ward, which had a working toilet. I found this an ideal opportunity to do “the cleanliness test” by putting a tic-tac mint in the corner of the ward.

Sarah’s nose feed mixture was increased to a super dooper 1.5 Cal per ml overnight, but she only weighs about 6.5 stone at the mo! (After counting off her ascities) (that’s 43KG!).

Tuesday

Not much happened today other than Sarah waiting for a bed, the only breaking news was the fact that……oh yes……the tic-tac was STILL THERE!!!!!

Much later that day, the prof popped round to see Sarah. His first reaction was that Sarah looked much better than expected and didn’t think she needed the tracky anymore! (tell us what we don’t know!) He also suggested that the coma may have been caused by :
Unbalanced fluids what with ascities problem and the dehydration caused by sickness
Or
Could be something else such as a Calcium problem for example

He wants to perform a contrast CT scan - checking for any blockages caused by tumours though out her chest and abdomen later on in the week.

So refreshing to hear a doc say “we have an idea” rather than “we have no idea”

A bit later that evening, Sarah was given VIP treatment and moved to own room again

Wednesday

11:00am: Sarah had a swallowing assessment with the “Swallowing Assessment Specialist”!!! (COME ON! What a sweet gig!...imagine your job was to simply assess people swallowing all day!!!)

They deflated her cuff on the Tracky and left the inner tube in. First Sarah had to sip some water, then try some spoons of a forti- pudding thing (which she hated). That was followed by 3 tablespoons of some more delightful vanilla yogurt. But her breaking point was eating half a banana. ….which Sarah ate successful but with disgust as she complained that it wasn’t green enough for her royal liking! and she didn’t like the stringy bit which she had to pluck off! Hehehe…..YEP! she’s back on form!

Then Sarah had some Jacobs cream crackers…ideal when you haven’t eaten or drank anything for ages, and your mouth is ultra uber dry! BUT she managed to do all of them no problems (pig!)….(joke!) and the “Specialist” said her swallow was perfect (I’d expect nothing less from my Sarah!) and he said that her voice was very clear…..I know that much from the bombardment of orders I'm getting down the phone!

Then…like it was nothing major, the tracky girls said

“Right then! Let’s take it out”

Quick as a fiddle, they whipped it out, pulling all the scabs off (lovely!), and then managed to find and apply the only dressing that Sarah later found she was allergic to! (Itching like hell)…typical! I joked about it as it was a rubber-like dressing, and told her that her neck looked like a tyre that had a puncture repair kit stuck on!

Just like Sarah’s neck.

In the afternoon, Sarah’s chemo Doc came to see her with his team of 2 people.

Believe it or not, it's a close likeness!

He said that he was so relieved to see her and that he didn’t think he would see her again! (gulp! Thanks for the vote of confidence! This is super Sarah we’re talking about!....but we still love him!)

He also said that on new years eve, he spoke to the Haywards Health doctors and they had said that it was looking very bad for Sarah, and that they didn’t think she would wake up! They were, apparently, basically asking him whether it would be worth resuscitating her and how much she wanted to carry on (this was based on the impression that Sarah was getting!!)

Sarah, being Sarah, enquired on her chemo treatment (which she did from the moment she woke up!)….she wanted to get right back on the horse and give this FHC a good kicking. The consultant then went on to say that the short term plan was for her to get her strength back, get the nose tube out, heal up the tracky site and then go home for a couple of weeks.

And then if she is doing ok at home :

Medium term plan– to decide what treatment (if any) Sarah would want to take on next, taking in to consideration the results from the new CT scan results they planned to do, but no decisions would be made now about that, and it would be discussed in a few weeks time.

Thursday

Sarah pushed the boundaries of her new found ability to eat! And ate too much! All because she was told by a nurse that she was not eating enough! (bad move!) This caused her (Sarah, not the nurse - but it was a close call for the nurse) quite a bit of pain. She did extremely well on the eating front, and is still being fed overnight (what a gorger!)

This mixed with her ascities gave her quite a large tummy, but she was still full of smiles and as chirpy as ever.

Sarah’s belly….she hasn’t had time to shave it since she’s been in hospital!

Friday

Quick spot check on the Tic-tac in the old ward…and would you believe it….it's gone!!!....I bet it was given to a patient as a placebo!

Sarah had a CT scan. She suffered the usual pain of the nurses not being able to get a cannula into the tiny veins in her arms.
Today she also had the thick nose tube for the feed removed and a thin one put in….great you’d think! More comfortable you’d think, but she had a quite ridged wire inside the tube for about 3 hours, so when they xray’ed her, they could ensure that the tube was going in to the stomach properly.

This was the x-ray….

You see! Quite ridged! (Only joking!!)

Later on the Prof came back round and said that they now believe that the 'episode' was caused by a problem with the way she was metabolising, Sarah asked what that meant. He said that because Sarah was so dehydrated (due to the chemo vomiting), all her electrolytes were off ( because the fluids she was vomiting contained the electrolytes), then her ammonia levels got too high and other levels got too low. (High ammonia levels can cause confusion and comas).

Also to add - when Sarah came back from her CT scan, she had a sneaky look at the letter sent from Haywards Heath Hospital to Kings College hospital, which said she was number 6 on the coma scale (I hear you all ask like I did…WHAT THE HELL IS A COMA SCALE?!)

Wikipedia : Glasgow Coma Scale (GCS): The scale comprises three tests: eye, verbal and motor responses. The three values separately as well as their sum are considered. The lowest possible GCS (the sum) is 3 (deep coma or death), while the highest is 15 (fully awake person).

Close shave for Sarah at GCS level 6!, but she decided to pull her finger out and climb her way back up the scale as she was never one to miss an episode of Desperate Housewives!... so that just seems to add to the known fact that Sarah is a little miracle and medical marvel!

Saturday / Sunday

The Docs broke the greatest and long awaited news that Sarah could come home on Tuesday!! Fantastic news! But oh my god I have a lot of tidying up to do!!! (and lets face it, nothing moves that fast in the NHS…so we’re probably looking at May 20th next year!)

I brought in her wheel chair, and somehow refrained from zipping along the hospital in it before I gave it to her! She practiced her upper body strength using her arms to push the wheel chair up the world's longest uphill corridor in Kings (I didn’t tell her it was uphill until she got to the end! Hehehe I’m so mean!)

But she’s doing well, working hard with a great determination to build up and get her strength back, she even asked me to bring in her arm weights!!! Unbelievable! She’s eating much better…even better than before all this! But she’s itching to get home, and is fed up with hospitals after only a month!

Sarah after a weights session:

Roll on Tuesday!!

27/01/09 Tuesday : Sarah Comes Home !! [ Return To Top ]

Today my work kindly let me leave early to pick Sarah up from the hospital. As I pulled up, her mother had wheeled her outside in her chair (that's a wheel chair, not one she nicked from the hospital!).

Sarah’s eyes lit up like a light bulb and this massive grin instantly spread across her face! I jumped out shouting

HOME TIME DARLING!!

as she squirmed with excitement!

She walked though the front door of our house to “Hallelujah” music, which I triggered to blare through the speakers throughout the house, and was greeted by a banner of balloons, flowers and a massive hug (from me...again...not some random person stealing stuff from our house!)!

SARAH'S HOME!!!

Now she has to work on her strength (the amount of stairs we have in this place, she’ll have to!) and I even somehow managed to impress her with my tidying up of the house! (DONT OPEN THAT CUPBOARD!!)

So thanks for reading our latest saga, Sarah’s gonna clean up all my typos I’ve subjected you all to over the last month. But we'll be signing off until we have any new developments.

Thanks to each and every one of you for all the support, messages and positive vibes you sent....it worked!....and she did it....yet again! - "she's a proper hard-nut"!!

Will keep you posted with news.

Ta ta for now.

One VERY happy Dave & Sarah! (Well that's two really isn't it!)

Note: [ Return To Top ]

The last you heard from us, Sarah had just made it home after a tough fight.

During that time in hospital, I personally felt that if anything had happened to Sarah, during that month, I would of deeply regretted not making her my wife and having our perfect day, so I made a promise to her in hospital that as soon as she was able, we’d get married.

So we started shopping around for dates and venues, and soon found one place, Stanmer House in Brighton…and it was available, but in 10 weeks time!!!

So our lives have been absorbed with wedding planning – and cramming in 1-2 years of work in to a record breaking (and back breaking!) 10 weeks flat! – so apologise for the lack of updates the last 5 months :-s but my plate been a bit full!

So Sarah’s health has been progressively been getting better since her hospital release, she’s been excessively tired – With a combo of ascities reducing her ability to eat, her lack of muscle making simple movements a real effort for her, and her body is, of course, fighting away 24/7

I’ll do my best to fill in the gaps, but I need to chuck the update out to keep you all informed as to what’s happening right now – so will fill in the details of the gap later

15/03/09 to 20/03/09 – Ascities Drain – 11.5L[ Return To Top ]

Sarah had an ascities drain, she was in for 5 days - a massive total of 11.5L! Where does she put it all!?! It is planned that she will take the one chemo drug Sarafenib (Nexivar) leading up to the wedding,

08/04/09 – Sarafenib (Nexivar) Consultation[ Return To Top ]

Sarah had an appointment with the chemo doc to arrange her cycle of Sarafenib (Nexivar) leading up to the wedding

Nexivar appeared to be the drug that had the most impact on Sarah’s ascities and prevention of its accumulation as well as being tolerable, but Sarah also wanted it to be doing something towards the FHC

10/04/09 - Penicillin[ Return To Top ]

Sarah stopped taking Tirnethroprin and started taking Penicillin – 2x tablets per day (2 doses – 4 tables) – this was for a bladder infection she was getting from having the stent in, in her Urithra.

Sarah’s had quite harsh issues with skin cracking on the heels of her feet, and getting sore spots on her hands, and any part she sits or leans on for any period of time, but the doublebase cream we’re rubbing in seems to help (we’ve nicknamed it “chicken fat” cos that’s what it feels like to me when I get it on my hands!)

So if your having Nexivar and having these issues, pop down to KFC and rub a bargin bucket over you – it’ll do the same thing! Honest!

15/04/09 - Stopped taking penicillin[ Return To Top ]

Sarah stopped taking Penicillin as her infection appeared to of cleared up. exciting news enh!?

16/04/09 - Ascities drain[ Return To Top ]

Sarah had another ascities drain. this Always lasts a few days and always seems to wipe her out a bit after.

22/04/09 – Blood Panic[ Return To Top ]

Sarah’s currently staying with her parents in Goring-by-Sea leading up to the wedding, doing all those girly things and finalising arrangements for the big day. But then Sarah suffered a bleeding issue this evening, so she was rushed to Worthing hospital to be checked out.

She refused quite bluntly to stay in the hospital over night because she’s due to get married (to me!) in 2 days time!!! (Nothing stands in the way of this girl!)

The docs there checked her for any major issues, but found none, and believe it may just be a side effect of the Nexivar

24/04/09 – Wedding Day[ Return To Top ]

Wow – what an amazing day, by far the best day of our lives.

The day defeated forecasts or rain and cloud, starting and finishing under beautiful sunshine, any nerves escaped me and were replaced by excitement, I think my 2 best men Dave and James absorbed any nerves I had!

Sarah arrived in a beautiful Beauford car for St Lawrence’s Church in Falmer

and dazzled everyone with her strength and beauty – and especially me! She took my beath away as she glided up that aisle with grace and a massive beaming smile.

The day continued in Stanmer House in Stanmer park, Brighton. The reception was amazing, and it was so fantastic to see all our friends and family in one place.

It was a truly beautiful and emotional day, and one we will never forget. – again – I will add to this when I have time.

25/04/09 to 26/04/09 - Brighton pier honeymoon – Hotel Una[ Return To Top ]

Some good friends paid for Sarah and and I to stay in a beautiful and ultra kool hotel along Brighton sea front – Hotel Una. Were we had a first class service, and stayed in one of their rooms which had its own private Jacuzzi and steam room!! We were welcomed with scattered velvet rose petals and champagne on ice with strawberries – what better way to end our wedding day.

The first day was spent recovering – we had no idea we had spent to much energy the day before, lazing around and utilizing room service to the max!.

Our first trip out as Mr and Mrs was down Brighton pier, where we real fish and chips on the sea side, had those dirty dirty doughnuts and then a 99 flake ice cream each to round it all off, all under glorious sunshine.

03/05/09 – Friend for Dinner[ Return To Top ]

Over the years of this site being up and running, we’ve made a few global friends who have supported us. We had the great privilege of having a fellow FHC warrior all the way over from Canada for dinner.

We came home late on Sunday. Sarah decided to check for the e-mail her dad had sent her with pictures of her wedding shoes (must be a girl thing!.. that includes you Tedly dad!).

Sarah then discovered a string of e-mails from our friend we had arranged to meet up with, saying
“Hi, can you recommend any good hotels”
“Hi, just leaving for the airport now”
“Hi, just touched down”
“Hi, just arrived at the hotel”

Our jaws dropped! And were quickly on the phone – we had completely lost track of time and dates, and just assumed it was the following week we’d have a visit. opps! Still, we managed dinner, and lovely to finally meet him in person.

04/05/09 - Covent Garden[ Return To Top ]

On bank holiday Monday, we took our Canadian friend around Covent garden, and showed him a few basic sites. He was on his way to try out some interesting treatment, so we caught up about that, had a few coffees and beers, and the day quickly slipped by, wrapping up in the restaurant Fish! For some posh fish and chips!

After we said our good byes I rolled Sarah to London bridge hospital for her belly drainage – which had started to cause swelling in her legs

08/05/09 – Badly Put News[ Return To Top ]

So chemo man Doctor came in this evening accompanied by another doc. He discussed her CT scan results.

With a heavy heart he advised us that there had been progression in the peritoneum by the FHC, but as the last scan that London Bridge had was from November 2008, he was not able to clearly judge the scale of the progression as Kings Hospital had the more recent scan from January / February, but he would contact the docs there to make that comparison. But clearly the Nexivar was not having the desired effect on the tumours or the asities.

He then went on to talk about other options, bringing up the subject of “Sarah’s resuscitation plan”………enh?!.......with a bewildered look, we asked

“what do you mean”

To which we had a very messy response along the lines of

“Well if your heart stops in the middle of the night, we’d need to know your wishes if you wanted to be resuscitated or not, as the procedure can be quite harsh”

So at this point….call me crazy….but my knee jerk reaction was

“I can tell you the answer to that!...do it! Do what ever it takes” (resuscitate her that is!)

This was obviously a harsh and upsetting conversation for Sarah to be having, but it boiled down to the docs covering their butts as there is still no concrete evidence as to what caused Sarah’s coma at Christmas, only the Neurological hospitals report which finger points the chemo drugs.

So understandably they are being cautious,…but what a way with words! So a shocked Sarah was left to think about it while she had 11L drained off her belly.

14/05/09 – Chemo Consultation[ Return To Top ]

Today we discussed Sarah’s options. Obviously the docs are reluctant to dive straight in with the previous chemo.

But Sarah spoke about how she didn’t want to sit and do nothing about the FHC, which soon convinced the doc to set up trying 2 or the 3 drugs she had at Christmas. 5FU and Irinotecan leaving out the Catuximab she had last of all previously, which was the suspected coma drug.

26/05/09 - Spa break from Sarah and Andy[ Return To Top ]

Another amazing wedding gift from good friends of Sarah’s parents, they had treated us to an amazing spa break and Penny Hill, which had a Michelin star restaurant where they serve you millions if teeny tiny portions of taste exploding dishes! We’ve never had anything quite like it.

We also had some luxurious treatments, I had a foot treatment (man did I felt sorry for the girl doing it! Hehe…doesn’t help that I have ticklish feet!) and a full body massage, and Sarah had a posh manicure and facial.

They also had an ice room, which had walls of solid ice like fridge-freeze (made me feel like a frozen oven chip!) and a ball room style swimming pool where I carried Sarah around in into a lovely relaxing dose.

and no... I'm NOT naked!....they wouldn't let me!

Fantastic and relaxing few days for us both.

05/06/09 - Urethra stent replaced operation[ Return To Top ]

Today Sarah had an operation to have the stent replaced in Sarah’s Urethra as a CT scan had shown that her kidney had become slightly dilated.

She was placed under general anaesthetic and it took about 2 or so hours to complete but was a complete success.

08/06/09 - 5FU & Irinotecan[ Return To Top ]

Sarah started her chemo today – it was done with many bags, up to 22 hours per bag, very slow.

But she seemed very bright when I got to her today after work, no major side effects from it so far.

09/06/09 - Sicky Day to HDU[ Return To Top ]

Sarah had a bad start to the day, being sick and generally feeling sick.

Sarah’s mum arrived about mid morning and noticed Sarah’s eyes were dilated and that Sarah was a bit spaced out, the nurses were alerted and the Chemo doc came by to assess – They were concerned enough to bring and immediate stop to the chemo after that, based on Sarah's reaction at Christmas

During the day she had had a lot of sleep and ate very well, avocado and chicken with mayo her mum mixed up – very impressive eating – she even managed to chomp some chips and a bit of my burger! Cheeky cow!

Sarah was moved to another room so she could be closely monitors by the staff, she increasingly became confused generally, and struggled to get her words out. (a bit like me, the light weight, after 3 or 4 beers!)

A couple of docs came in to perform a test to extract arterial blood – which involved getting a needle the size of a lamp post, into her teeny tiny wrist, Her dad and I tried a number of dance acts on the spot to keep her distracted. (I was defiantly the better dancer!)

I decided to stay the night at the hospital. Due to increasing concern for Sarah, the doctors arrange for Sarah to be moved to the High Dependency Unit (HDU) simply so that could monitor her closely. I got a call from the Chemo doc around 11:30pm on the ward, he advised that they had run tests and found her blood had high levels of ammonia, he said that this could be the cause of the confusion, and they were levels that were reported back from the other hospital only 3 weeks after then event.

At this point he said we have a choice, sweat it out over the next 48-72 hours and see if they have stopped the chemo at the right time, or if her condition deteriorates then they can hook her up to a dialysis machine to filter out the chemo from her blood.

I went back into her room, and was shortly followed by a HDU doc who explained to both Sarah and I, the results, the plan of action and procedure. Sarah suddenly became razor sharp and responded to every question posed by the doc really well.

But no sooner had the doc gone; she struggled to piece words together and focus, and continued to get more confused about general facts and things – quite alarming to see.

She was shortly moved to HDU where she fell fast asleep and we all hoped for a speedy recovery.

10/06/09 – Overnight Stay at London Bridge[ Return To Top ]

I woke, showered and was straight down to see Sarah (damn handy being in the same building) Sarah was crashed out fast asleep; I struggled to arouse her (no violent shaking involved I promise!), and got a quick update from the nurses. Apparently she woke about 4am a little agitated and unable to make sense of her words, but everything else was in check.

The nurse then performed a test on Sarah, by picking her finger for blood…how about that for waking you first thing in the morning! she woke, and again, was unable to speak properly which was distressing for me to see and for her to not be able to speak.

About 9:30 they performed a test for her ammonia levels which came back at 309.2, and she went in for an MRI scan of her head which came up with nothing (that’s…nothing out of the norm…not that they found no brain in her head - thank you very much!)

She managed to demand drink from her mum early afternoon, then went back to sleep, but a good sign!

About 13:30, they hooked her up to a dialysis machine, she at least made (to her groin! Ooowwww!!)

Looks like a droid out of Starwars!

Sarah was hooked up but not switched on, and mid afternoon, I walked back to a much brighter looking Sarah, her face lit up as she saw me with a massive smile, but still unable to make sense of her words. She soon fell into a deep sleep.

Early eve, her chemo doc popped by to see how she was. He shook her shoulder and called her name to wake her (nice!)… but nothing. So we chatted a bit, then about 10 mins later he tried the same technique again (I sat their waiting for Sarah to punch his lights out! Hehe), calling her name, then, with her eyes closed and fast asleep she response “yes!” “yes!” “yes!” then suddenly, her eyes pinged open, and as if nothing was wrong, as clear as a bell said

“oh hello! How are you?, sorry, I was a bit spaced out earlier!”

I can not tell you how relieved we all were just to hear those words, it was like someone flipped a switch!

Onwards and upwards!

12/06/09 – Very hard day[ Return To Top ]

Sarah had a very hard day today; she spent a lot of it in pain and discomfort, and being sick from time to time. The docs came by and advised that there could be a number or reasons for all this :
• Coming off the Fentanel patches (pain killer sticker on her arm) causing withdrawal
• The chemo making her feel sick
• The dialysis machine making her feel washed out (no pun intended!)
• Not being allowed to eat (because apparently, when you eat protein, this can create ammonia which is usually passed out by the kidneys ..but not the levels that she’s creating after the chemo)

And apparently the reason this is all happening, is that Sarah is having a very rare reaction to the chemo – the chemo is affecting a tiny part of her cells_the mitocondria________EXPLAIN BETTER…LATER______

So she’s currently only getting a high concentration of glucose as this apparently slows the body from turning on itself and breaking down its own protein (muscle etc)

Sarah is so so tired today, beyond tired after such a rough day, I left a very tired darling in the hospital today, awaiting to be hooked up to the dialysis machine once again.

13/06/09 – Ammonia Levels back to 275[ Return To Top ]

I woke up late today after an exhausting week, so I called the hospital to check on Sarah only to hear that she could not speak again (not making sense), and that she was shouting a bit and crying.

After the fastest shower in the world and some illegal driving, I was there in 40 mins flat (weird, cos I can’t get ready and into central London that quick when I go to work!), I chucked my car in the only available disabled bay…I don’t think there’s a rule I didn’t break!....that would drive Sarah nuts!

I got there and Sarah seemed distressed, but I soon used my snake charming skills (and I’m not saying Sarah’s a snake!!) and she was soon relaxed and sleeping.

Her ammonia levels were high again, from 175 last night, up to 274 today (Normal is 50 apparently!) The nurses were unable to put her on the dialysis machine as they couldn’t get “the line in” and they had tried for 5 hours!

Eventually, a doc came in to insert a line/tube into an vein in her neck, via her chest, and I was asked to stay to help keep her calm…(gulp!...poop!) so as they made a small incision in her chest and fed what seemed to be a tube the size of a drain pipe and the length of the Great Wall of China. I can honestly say I have never focused so much on rubbing her leg and holding her hand so much…my poor darling – but she was so so brave.

The doc advised me there was a 2-3% chance of puncturing a lung with the procedure (really, really needed to hear that!) but it was apparently nothing they couldn’t handle (bloody hope not too!)

Once linked up, they had a better flow than before on the machine, so they expected to blood to get cleaned faster, so good news there.

I asked about her food, as she had not been fed anything for quite some time, and the docs were looking into giving her a feed of fat and glucose (no protein)

She slept it off, about 16:44 she woke, and was able to speak and communicate much better, her words were slurred, with the odd word slightly wrong, but it was easy to get the jist of what she was saying, which was generally, “I’m Sarah…do you understand?!” or “I adore you…but I think I’m going to be sick!”….I seem to have that effect on her at the moment!

Weird this ammonia stuff, it comes out in your wee…..I’m never gona hold it in again!

About 20:30 - Sarah woke and started to show that she's back! and had me running around the hospital looking for a very particular iced water! then had me waiting on her hand and foot, putting straws to her mouth on demand!...then, even surprised me by making a nurse roll her on her side, right to the edge of the bed, then turned and said

"is that enough?" I said "for what darling" to which she replied "I want you to get in!"

I’ll keep you posted of any major changes, but shes making good progress in the right direction again.

All your positive vibes and wishes please

Ta

Dave

14/06/09 - Ammonia Levels down to 162.8 [ Return To Top ]

As I arrived today, Sarah caught sight of me and her face poured relief with a smile that said “thank god you’re here!”

She’s doing well, and the plan is to keep her on dialysis until the ammonia levels stabilise, so we could be her for a while, but Sarah is already itching to get home.

And the beauty of all her trials, she doesn’t remember a thing about being out of it and being upset, just confused.

Anyway – any changes – this site will let you know

Ta ta

Dave

Quick update on the days as all the days have blended together where I haven’t had time to do the updates.

15/06/09 : Ammonia Levels Down to 119[ Return To Top ]

16/06/09 : Ammonia Levels Up Slightly to 120[ Return To Top ]

17/06/09 - Ammonia Levels Not Taken[ Return To Top ]

18/06/09 - Ammonia Levels Down to 75![ Return To Top ]

19/06/09 : Ammonia Levels Down to 69 [ Return To Top ]

Today Sarah’s Ammonia levels are heading in the right direction, and I personally breathe a sigh of relief that the possibilities of madness and confusion with flailing punches are falling into the distance!

20/06/09 : Ammonia Levels Down to 63.6[ Return To Top ]

21/06/09 – Ammonia Levels 52.2[ Return To Top ]

22/06/09 : Ammonia Levels down to 43[ Return To Top ]

23/06/09 : Bloody DVT – Left leg![ Return To Top ]

24/06/09 : Ammonia Levels up to 48…weird[ Return To Top ]

Maybe it was because Sarah was wearing her new glasses? maybe the earings?

25/06/09 : Ammonia Levels down to 62[ Return To Top ]

26/06/09 : Infections everywhere![ Return To Top ]

“You know I have a blood infection?... and my port was infected too, along with a urine infection…. but its ok, they have a micro-biologist assessing everything, so that’s why they keep changing my anti-biotics”

….I mean! What do you say to that!?! I’m chilled about it as Sarah seems completely not too worries about it! Just taking it in her stride as she watches her cookery programs!

But Sarah’s on form, in lots more comfort, and the drain for ascities is out…surely it can’t be long before she’s out? We’ll see – fingers crossed people!

She's back on the protein again...and my first stop...McDonalds!

The Doc's are going to stop montoring the Ammonia levels unless her behaviour changes, so here's a funky chart for you for closure!

And lastly, just a quick note to you all, thank you all so much for your lovely e-mails of well wishes and support, also the cards you’ve sent Sarah – I’ve been taking them in for her.

They’ve really touched Sarah, and as usual, sorry we haven’t had time to reply you any of you yet – I feel really rude, but we have no internet connection at the hospital, and that’s pretty much where I live at the mo.

Also – to all those that gave us lovely wedding gifts, the thank you cards finally arrived! but pretty much all of our time has been consumed since the wedding, so we haven’t had time to write them, and Sarah wants to personally write thanks…so its on its way folks!

27/06/09 to 03/06/09 : You can go home…. just kidding, no you can’t…. maybe you can [ Return To Top ]

So its all been a bit if a tease this week (and i'm not talking in the "strip kind of way...I dont have the figure for that anymore!). They have Sarah on antibiotics to sort out her infections, she’s doing really well, and was brighter every day…until they increased her pain patch, and it seemed like within a day, all of Sarah’s energy was zapped! but this wasn’t just because of the patches

kidding darling! You’re anything but!

So frustratingly, her home time fell further into the distance, past the weekend! Sigh.

On Friday, I had pretty much the hump with this (as did Sarah!), and told the nurses I would be stealing her over the weekend to which they responded

“how are you going to her up the stairs?”
To which I said
“I’ll carry her! Its not like she weights much”

It was about time Sarah hung out at the house....time to turn this round

04/07/09 to 06/07/09 : Kidnapped home! Enough is enough![ Return To Top ]

So the weekend was lovely, we both caught up with much needed sleep (a months worth in Sarahs case!), and Sarah didn’t have me bursting into the room though out the entire night, taking her blood pressure and poking her with needles like they do in the hospital!

I returned her late in the evening, but I had an early rise on Sunday to go get her once again. She avidly practiced the stairs like they were the only thing between her and her great escape from the tight clintch of the mean old hospital.

Mean hospital with mean staff (joking!)

She went from the recommended each foot on each step, one at a time, to, one foot on every other step…one her 3rd try!!! Amazing this girl! Nothing gets in her way…before I knew it, she was zipping up and down up and down!...no problem!...if that was me….i’d so of got one of those chairs installed for at least a few months!!

Yep! …. And I’d get that funky wall paper to make it look the part!

The girl EVEN cooked me a freshly made curry…from scratch (not a jar….how dare you think such a thing!)

Come Monday, Sarah had done so well, the docs told her to pack her bags! She was heading home that same day!!!!!

Sarah called me at work to tell me, and I will never be able to explain how relieved and happy I was to hear her say that! Things at work soon wrapped up and I was speeding my darling home in a taxi with her take away buying dad, and her juice glugging little sister.

Shes back….shes done it again…..AGAIN! we have a month off seeing docs…so we’ll be working on her strength,so sighning off until the next update.

Oh – and the medical term for Sarah’s condition is “encephalopathy” where ammonia is produced in the degradation of proteins, and the ammonia is not detoxified by the liver properly which results in brain fog / poisoning of the brain or encephalopathy (coma)…few people recover without adverse side effects!...but my Sarah did!...twice!.....’ave it!!!

Thanks for reading!

Dave & Sarah

06/07/09 to 14/10/09: Missing Months![ Return To Top ]

So….its been a while enh!?

“do you want to open that jar and chuck it over that chicken”

she means

“I’m going to grow herbs, dry them for 4 days, chop them up in to small bits, grind them in to powder and make the most tasty paste in the universe, spend 2 hours preparing and chopping veg, then spend 2 hours cooking”

Fantastic!!...then I remember…. It’s my arms and legs she borrowing to do it! And my god I make a mess!! Then I have to spend an hour sorting out the kitchen so Sarah doesn’t try and do it the next day while I’m at work!

It was great when my mate Dave came round, as he has the same name (obviously! Duh!) so when she’s was asking “Dave can you do this…” HE automatically thought she was asking HIM to do it!!!...and did it!!! Sucker! Wicked!...so I’ve chained Dave to the Kitchen sink and given him a dog basket to sleep in!

I’ve also been working as hard as I can to sort the house out so its decorated how Sarah likes it, seeing as how she’s stuck in there most of the time! And I’ve completely stripped out the bedroom, coving ‘n’all! And with the great help of Dave, Les and my mum, have been able to give her the dream bedroom, order some new furniture and she has her first luxury dark cherry wood dressing table. – totally designed and chosen with Sarahs classy eye for detail of course

When we first finished it, I’d find Sarah, slowly crawling up the stairs JUST so she could sit in the new room and smile….perfect and beautiful to know she loves it

I’ve also built form scratch, the inside of the wardrobe, so she can put her stuff (aaaaalllllll her stuff) away neatly…yes….you ARE going to see a pic of it!!

PIC

When I first showed Sarah the finished product, she couldn’t get over the fact that I had hung all the stuff in the wrong order! Hehe doh!

But is has been very tough on her. As a lot of you know, Sarah’s always been an active person, and this is like having her legs chopped off, and all control wiped away from her. She’s exhausted a lot of the time, the time she’s had in hospital in these recent episodes have stripped her body clean of any strength she had, so everything is a big effort, and with her legs the way they are, she can’t move around enough to build her strength back up…proper catch 22

But, on the plus side (yes there is one!) her eating has vastly improved! She’s started being able to eat near full meals once again! Brilliant, and the docs have stepped back the Lactulose solution and Hepa Merz (Lo-La) drugs that she was taking to keep her ammonia levels down, so she now only has 465 tablets to take every day!

Also, her ascities was getting quite regular, needing it near enough every 3 weeks as it built up, but recently, the build up seriously slowed down and her tummy stayed flat for 4-5 weeks! But then accumulates.

During that time, we visited the surgeons who were considering a “Shunt” where they take the fluid from the belly, and pump it back in to the arteries (I think it’s a button under your skin you press when the belly builds up too much) then your body deals with it as waste. But this idea was axed as the arty they would used had already been used for Sarah’s dialysis, so the docs were worried it would of weakened or damaged the artry. And also, Sarahs tummy had stopped building up at the time.

The other apparent thing the docs were talking about was putting a tap into her belly, so she could drain it when ever she wanted, but these are prone to infection and regular blocking up, so we kinda dismissed that Idea

As for treatment, the Chemo doc has backed right off after her nearly going in to a coma again, and has already said, that the only treatment he can provide if symptom control …and to be honest, the whole dialysis ordeal has completely put Sarah off of any further chemo for the moment.

So, finally, your just about up to speed with what’s been going on, so we can pick up with the more recent updates…

14/10/09: Cellulitis of the Legs![ Return To Top ]

Sarah’s feeling particularly pants today, her legs are swollen, the skin on the legs is red raw, looks like Cellulitis again, and her tummy is full of liquid again, meaning she can’t eat much because her stomach’s squashed.

All in all, not good, so she reluctantly called the hospital that agreed to have her in that day.

Once in hospital, we asked the question, can the DVT cause this swelling of the legs and fluid build up, the answer we got was not a great one, apparently it was more to do with the disease, and it maybe due to the liver not working properly….I think we’ll cling on to the word “maybe” on that one!

So this has left Sarah feeling nervy about what is going on in her body

15/10/09: Tummy Pain[ Return To Top ]

I arrived late into the hospital after putting the wardrobe together.

Sarah had been sleeping a lot, and when I arrived she started to get a pulsing sharp pain where the drain had been put in, (and nothing to do with my arrival I might add) poor darling, she really suffered.

The nurse eventually popped along with a couple of Fentanyl tablets to dissolve under her tongue, fast acting pain killers, but make Sarah drowsy and her mouth ultra dry

The Docs said it was probably because she had 8 previous drains, and what can happen is the body recognises a foreign objected, and builds proteins around it. But when the tube/drain is removed, the proteins remain which can cause pockets of fluid to build up, so this was one of the explanations to her discomfort. The other being that a nerve had been touched (“phranged” was their word!)

By the early evening, her leg swelling has turned round (as shes had her legs up for all day, and about 67 gallons of ascities has been drained for her tardis belly

16/10/09: EDEOMA[ Return To Top ]

We chiiled out thought out today, but then I went to some drinks at the evening, and the moment I stepped out of the hospital, The Chemo doc pounced on Sarah like a cat watching a piece of string! So I didn’t actually find any of the below out until I returned later that eve.

The Doc had been saying some pretty harsh factual things. He said that the EDEOMA in Sarah’s leg is a sign of progression, and that it indicated that the liver was not functioning as well as it should, and that she was on inevitable path for with there was only one outcome.

He also asked if she had enough care at home, and that a hospice could be considered.

The obviously seriously upset my poor darling, and it really really hurt me to find this out after the event and that I wasn’t there for her. Thankfully, the father in law dropped by after work shortly after that conversation.

17/10/09: Sleepless Nights[ Return To Top ]

Sarah had a poor nights sleep, so has spent a lot of the time sleeping, this is after telling me at 8am this morning to get in early so I could bring her a Mc Donald’s hash brown and sausage mc muffin!!!...and hence…for the first time in ages, I’ve had time to write up the recent events.

So things are looking rather harsh at the mo, maybe that’s the reason for the lack of updates, as there hasn’t been a lot of positive to write about. Sarah’s on a fine balance at the moment, but on reflection on what the docs have been saying to us recently, I can tell you, she has a world of determination behind her to get though this, and that’s the main focus.

We’re trying alternative things, I’ve bought all the chakra healing stones, I just want to make sure there’s no stone unturned (if you excuse the pun!) she’s eating super food “shoots” (alfalfa seeds home grown)

So I need you lot reading this to help Sarah, weather you pray, send positive vibes or meditate – send them her way

20/10/09: Wood Pecker[ Return To Top ]

Sarah had quiet an eventful day. We nick names a new nurse wood pecker as latterly, every 5 minutes, she knocks on the door, in and out, in and out, all day long remembering one thing after another which is very exhausting in itself.

Sarah also had a visit from the physio today, and she crept though the door, Sarah, like a hawk, instantly spotted the Zimmer frame she was foolishly clutching…Sarah instantly stopped her in her tracks saying “Take THAT away!.... I won’t use it and it’ll be a waste!!”

Sarah then proceeded to she the physio that she was as hard as nails and proceeded to walk, unaided up and down the corridor!

After that, I arrived to the statement “you will NOT BELIEVE what the physio tried to bring in here!!!” hehe – that’s my girl!!

Sarah’s doing better today, and the doc said she can go home if she meets one of the conditions of getting a bit more mobile……in fact….as he was saying it, Sarah was practicing reverse push-ups on the bed!!....in your face doc!....we’re outta here!

Other than that, Sarah’s Cellulitis is getting better, still quite red, but the heat is easing off from the infected area, oh, and in case you don’t know, you get Cellulitis is …as in Sarah’s case…your legs swell up so big, the skin gets cracks in it, which can get infected by every day bugs.

It will be lovely to have her home, its been a week now

23/10/09: Part 1 - Breathing Concerns[ Return To Top ]

Sarah’s dad visited her while I busily worked away on a wardrobe ready for Sarah’s arrival.

Sarah’s dad called me saying he was worried about her laboured breathing. When I came in to the hospital, it sounded like she was knackered after running a marathon.

So I got her into the bed and let her try and sleep it off, but it was like she couldn’t catch her breath even in sleep.

When she woke, she seemed slightly confused, like her ammonia levels were up. The docs had taken her off the Lactulose while she was on anti biotics for her leg, so a dose was organised, and with out a quibble, she took it.

We chatted a while in between mini naps, she really seemed to struggle to stay awake, but still her determined self to do things her self unaided – that’s my girl

23/10/09 to 24/10/09: 12:15am[ Return To Top ]

From this point I, I really can’t bring myself to type the words as they make my fingers feel heavy like lead. Nor can I go though it in my mind anymore. And I’m so sorry from the bottom of my heart if this is the first you’ve heard of which follows.

My beautiful Sarah....our beautiful Sarah never woke from that peaceful sleep; On Saturday 24th or October 2009, she passed away at 12:15 Saturday Morning in my arms with her mum, dad, her sisters, my mum her friends all around her, surrounded by nothing but utter love.

I’m so so proud of her…..we’re so so proud of her, she fought until the very end with unwavering strength, spirit and determination, and she was never going to leave on anything else other than her own terms. As I’m sure we all do, I deeply…. deeply miss my beautiful wife Sarah.

We're still shocked, and heart broken...

Sarah IS such an amazing inspiration and proof that miracles can truly happen way beyond the fact of medical science, her strength in mind and character was tested….and she won every time. She has, and always will inspire my life and many others. Her strength will live on.

Arrangements[ Return To Top ]

The arrangements have now been finalised and Sarah's funeral will take place at the following church in Blackheath, London:

St Margaret's, Lee
Brandram Road,
London
SE13 5EA

On :

Thursday November 12th. The service will begin at 2pm.

Below is a map indicating the route from Blackheath train station to the Church - 8-10 mins by foot.

Reception

There will be a reception below the church in the crypt after the service and committal, please feel free to join us for a drink and nibbles.

Please download the document below if you want a printable version of this info to take with you on the day

(Right Click the below links > Save Target As...)

Arrangements.doc
Arrangements.pdf

If you are reading this, then of course you are welcome to come along, we would love to see you.

Parking

Parking is limited, but there are a few spaces around and outside which have been made available.

Dress Code

If you choose to come and join us in honouring of Sarah’s amazing memory, there is a dress code.

Guys : Colourful shirt or tie
Girls : Glamorous, with fantastic heels that Sarah would love to see you in

Thank you all for your very kind messages, cards and flowers. the support you have given myself and the family, its been truly touching and amazing.

Flowers / Donations

If you wish to do something for Sarah, rather than buy flowers, we would ask you to considder a donation to the Mac Millan Nurses, who have been fundamental in the support of Sarah though out her brave journey. Flowers are already being arranged for her service

You can donate directly on the website naming Sarah as your reason, else we can take a collection at the church - which ever you feel most comfortable with.

http://www.macmillan.org.uk

Thank you.

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This site will be unlocked after the funeral, so Sarah can continue to inspire for years to come, and when I feel I can, I will revisit and finish the backdates of the most breath taking woman I have ever known.

All my love my darling dilly. xxxxx