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