Wednesday, 21 October 2009

quick update...

...can wait for one for months and along come two! scan results yesterday not ideal. CT showed both liver and lungs a little worse, which apparently to be expected after the chemo break. silver lining, apparently the liver tumors seem a little 'flatter', which may indicate the new chemo has started to work.

MRI has explained spazzy pirate eye. got a new tumor on back of skull (BONE NOT BRAIN)-the occipital bone to be pinickity. this is pressing on the occipital lobe which is responsible for lots of visual processing hence the problem. so having a 5 day course of radiotherapy on back of head, the first of which just had. was SO much more stress free than all treatment so far, the staff were lovely and all it involved was lots of drawing in red pen on the back of my head (did make mum check they weren't just drawing rude pics) and then firing complately painless lasers at me more 5 minutes. can cope with 4 more days of that.

apparently will lose the laser fried patch of hair pretty quickly so it might either be time for the big shave (have already reduced to boy short hair) or investigating to see if they do a sparkly range of jewish style skull caps...

still getting my head round all this obviously. little things like the fact that dr cool said if it wasn't causing any side effects he'd be happy to leave it to chemo to deal with are reassuring. i just wish the bloody thing would stop spreading and stay in the one place! i know i'm a woman and sposed to be able to multitask and all, but still-there are limits lol! prob gonna have a full bone scan in the near future- a previous mri showed up a little sth further down my spine that may or not be relevant. the good thing is the chemo (as long as this cocktail behaves itself!) should be whizzing up and down the body as a type, mopping up all evil cells WHEREVER they may be whether or not we currently know about them.

big hugs xxx

Saturday, 17 October 2009

ooops it's been a long time!


so sorry it's been months and months since an update :s when i last wrote i was about to embark on a month long 'break' between chemos. think in that time definitely managed to redefine break! if it wasn't one smallest of the small print side effect it was another-spent half the time in hospital doh... both acute tummy pain and severe headaches resulted in more scans. thank god ct scan of the brain was clear (no panic surrounding that one at all!). tummy scan showed an ileus (spelling?!), which as i understand it is a distention of the gut. hardly surprising considering the battering it's had from chemo. anyway, eventually after all of the comings and goings into hosp we decided to just get on with the next lot of chemo!

now had 2 lots of the new cocktail- next lot on tues. side effects still include the fun toilet time but a lot less pain in general-think (touch wood!) we've got it under control with these patches that resemble nicotine patches. they're a good look ;) also very tingly and everything feels really soft, which is actually quite nice! nose bleeds also a new addition-always a bit of a surprise but not really a problem. now i've said that i'm going to ruin something really expensive and cream aren't i...

last, and possibly irrelevant, side effect is my left eye has gone all out of focus and fuzzy, causing me to accidently come on to all passers by or sit there with my hand over my eye. again-a good look. so had a brain MRI this week. also had a CT scan of chest,tummy and pelvis just to see where we're at-results on tues.

phewww enough cancer! sorry, feel like this has just been a list of weird and wonderful mishaps of the body... more exciting things include going to see Micheal McIntyre at Wembly who was brilliant! dad's also got us tickets to go see Russel Howard and Eddie Izzard in the next couple of months, which am really looking foward to. we took my really cute claire sized wheelchair to wembly and just made everything so much easier. all the staff are so much more helpful towards you! had some lovely visits and exciting packages-thank you SO MUCH for all your support, really does mean the world to me and make things so much easier :)

lots of love xxx

Thursday, 27 August 2009

A very eventful week


Hope things are good :) Been a bit of a mental week...

Went into hosp last thurs ( a week ago) to get scan results and unfortunately the chemo has done nada-the scan is practically identical to pre chemo. Dad did ask if there was any chance he was just looking at the wrong one but unfortunately not! Good news is it's not got any worse. On the original scan there were some small marks on my lung bases that we were rather hoping were just inflam or sth, but there still there, so looks like we have a wee bit of spread there, but they're no bigger than they were.

So plan is more chemo (ARG!!!) but with different agents. This time we're trying sth called avastin and another one with a very cool name. Something like rhinotecken. Anyways not going to worry about that for now as having a month off to rest and recoup and try and put some more weight on. As was looking very skinny and battered when went in for results they decided to keep me in for a few days to feed up and medicate up. Turns out my magnesium levels were low so had some infusions for that. Had some lovely visits and got out on tues.

Then over night on tues my hands decided to cramp up into crazy claws and wouldn't relax, so had to go back in first thing weds morning boo. Turns out the cetuximab had decided to also bind to some receptors on my kidneys, preventing magnesium from being absorbed so i just pee i all out, and the low Mg caused the cramps. So, multiple infusions later have been released this eve (thurs) in the hope that it won't happen again. We shall see!

Despite all of this, feeling good in myself (possibly slightly due to steroids!) and looking forward to the chemo break. Will lose my hair on the next lot, so have been planning out some fabulous wig, scarf, earring combinations! Have also managed to put on 5 kgs since last week :)

Lots of love xxx

Monday, 3 August 2009

Last chemo tomorrow :D

Hey lovely beautiful people!

Really hope everyone is well and enjoying the small glimces of summer...

Have had the best week since this whole thing kicked off :D Had been quite rough, and turns out my haemoglobin count had dropped to 8.6 (should be above 11.5) which might explain things! So had a blood transfusion on weds and been put on a two week course of steroids. Blood doners are amazing, not knowing where ur bloods going but that it can make such a huge difference to a strangers wellfare is incredible. I can't express how AMAZING it is to enjoy food again after 4 months of dreading meal times-i just keep eating and eating! I almost feel as if if i stop, it'll go away again... So praying for some weight gain when i go in tomorrow for last lot of chemo to make the nurses happy. They're all so sweet and motherly (think i'm a bit of a novelty being under 50 and all...)

Treatment wise, plan is last big chemo tomorrow but staying with weekly baby chemo for the time being, which is fine by me as apart from hideous rash and crazy toilet time (which i now accept as the norm!) it has very few side effects. Will hopefully be booked in for scans within the next 2/3 weeks, then gotta wait and see. Ideally once we get the results, go away for a week or so, then take it from there. Dr Cool was discussing the possibility of radioactive beads and probes and things as an alternative to surgery (cos my spread is accross both lobes of the liver) but all will depend on the scans. Not looking forward to that waiting period between having the scans done and waiting for the results, but it will be nice (HUGE FINGERS CROSSED) to know progress is being made and its ass is being kicked.

Apart from the excessive obscene eating, recent highlights have included another trip to the zoo with chris, naomi and penny. Was very lazy and got pushed around in a wheelchair for the day, which to be honest esp as this was pre transfusion, was the only way could have done it. It was such an insight-the number of kids that stare at u and people that leap out ur way...was also at eye level with these scary free roaming turkeys that were somewhat unnerving!

Have also been driving, which is a huge sense of achievement and just wonderful to get a bit of independance back. Drove for a lovely pub lunch with manisha yesterday and then to woburn for tea. Did fall over in the tea shop which was hugely cringe worthy, but thankfully hardly anyone saw! Also been out for meal with mum and dad-just SO good to enjoy food!! Ooooh and managed to go shopping too- 2 shops, 6 items, not passing out-result!

Anyways think i might just go drive and get a mcflurry-how exciting!!

Sooooo much love, and thanks again for all the incredible support. I couldn't do this without you guys.

Claire xxx

Wednesday, 22 July 2009

5 down 1 to go!


Hope everyone's ok and enjoying the teeny tiny glimces of sunshine we're getting- bring back the summer!

Am currently connected up to my penultimate condom of 5 FU ( a wooohooooo!) :D This lot of chemo seems to have been a lot easier then its predecessors. I think it's partly due to knowing i've only got one lot of big chemo left in 2 weeks, and partly cos they've reduced the dose of oxalliplatin cos my weight dropped below that threshold. In hindsight mum and I are wondering if i was a bit toxic on the last dose i.e. it was a little too poisonous! Was getting all of these crazy muscle cramps making it hard to walk and stuff and literally slept for about 3 days. Any which way am much happier with this dose!

Oooooh i was also gonna say, the rash i was supposed to get on my face has gone mental-but nowhere near my face and all down my legs and tummy! I've never been any good at geography or directions so reckon its just got a bit lost...still, it's pretty gross so much better where it is! Completely mystified the docs and nurses tho who have 'never seen anything like it'. Maybe they've just never seen the drugs work so well *fingers crossed* ;)

Will hopefully be talking to dr. cool next week about what happens next. First step i shall imagine will be scans, first a CT then a PET if needs be. Haven't had any since before starting chemo, so will be interesting/nail-biting to find out what it's all been up to whilst circulating my body... Then we go from there.

Ideally we'd love to go on a wee jaunt to italy post chemo-pre next set of stuff, but it's dependant on about a 100 things. We shall see! Would be lovely to get some sun and rather fancy a nice new nautical bikini :D

Got lots of other things to look forward to atm, Penny, Naomi an Chris are coming all the way from Edinburgh for the weekend, got some BJstyle company for baby chemo on tues and Chaz is back from New York for a couple of weeks soon so potential Lockerbie reunion on the cards-VERY EXCITING! Just gotta figure out how to successfully transport self to Lockerbie..should keep me out of mischief...

Thank you so much for the continued support-means so much to me xxx

Saturday, 27 June 2009

Chemo angels

Just stumbled accross the most beautiful concept called chemo angels. Basically people undergoing chemo can sign up and are asigned to an 'angel' who just sends them cheerful cards and occassional teeny gifts, just to bring a smile to their face! I've been SO lucky with all of the support i've received, and know how much post time can make a day, but i'm sure there are lots of people out there who aren't so fortunate. If anyone fancies it, here's the link (i've gone link crazy today!).

Just thought it was such a lovely lovely idea!


Livers and spice and all things nice


Oops hadn't realise how long it had been since i've written-bad blogger! Hope things are going well and people are managing to make the most of the pretty sunny days. Special mention to Estelle Fest- hope u guys are having an awesome weekend... :D

Very excitingly am half way thro big chemo yaaay! Round 3 on monday has brought the predictable toilet fun, vomit (first time i've missed the bowl-gutted!) and crazily muscle cramps in my calves. Actually was walking like the 73 year old this cancer was designed for! Mentioned this to the on call sort of doc when went to get disconnected from my lil condom friend (Dom?!) who we think was Greek. He kept muttering things about DVT and poking my legs, said he was going to call my consultant and dissappeared. Completely! It took mum some detective work half an hour later to track him down, at which point he muttered no no muscle cramps and said i could go home... We concluded he is silly.

Gradually getting over the last bout now, in prep for baby chemo on monday. However rough it is, know it's a good thing that being hit so hard and fast....NUKE NUKE NUKE! One of the isssues is still trying to maintain weight. Whilst typing this am battling thro two yogurts and a fortisip (aka rank-o-sip) milkshake, as dad's informed me he'll only scan in and email me the ball photos to put up here once i've finished the lot... tough love! Think i'll have a whole new found empathy for turkeys come October time...

Dr cool did come bearing some good news on mon - we think!. He's been looking at my liver function tests, basically a series of blood tests to look at what ur liver is up to... The ALP level (alkaline phosphotase) should be below 120. When we started mine was in the high 400s, but it's now down to low 200s :D Apparently these are notoriously hard to translate during chemo, cos the liver's having to deal with all of the poison coming thro, but this is a good sign. He's also mentioned me to the liver surgery dudes in Hammersmith. Nowt will be done about that til scans are done at the end of chemo to see what's happened, but like to think they know my name...

Other good news from the land of chemo-a report's been published on the drug i've been on for baby chemo (cetuximab) and NICE, the body who decide what treatment is available on the NHS, have decided to make it so from September time-ish. This is fab, as not only does it show the results from treatment have been positive, it'll be much more widely available to those who need it.

Had a fab time at the ball couple of weeks ago, was so nice to see everyone and catch up! Hopefully (1 and a half yogurts down!) the 'formal' photos should be going up. Heelarious-Lo the stud muffin, Liz the flamingo and Chris the victim of a PR... they're going to kill me (if Dave doesn't first!) Make me smile SO much :D :D :D

Also had an awesome weekend in Bristol last week, visiting Shell with Manisha. It's such a cool city, i had no idea! Shall definitely have to return for more tapas, chocolates and sangria (first time i've managed more than two glasses of anything in aaaages!) in the very near future.

Hopefully will get a couple of old-lady-style-side-swimming sessions in next week, depending on what the baby chemo decides to do...have also got the very important job of helping to design a 'splat the rat' stall for our local fete next saturday. We're going to be raising money for KOP (the Kenyan Orphan Project) who a group of med students are going away with this summer. I should have been going too- if u want any more info or to donate, the link is

It's a great cause. Am also very excited about chosing a rat...

Lots of love xxx

Thursday, 4 June 2009


There's a beautiful expression i keep stumbling across:

'It's not about waiting for the storm to pass, but dancing in the rain'

To be completely honest, i think trying to stick to it is the hardest thing i've ever tried to do. Including singing an 80s rock anthem in front of 2000 chilean school kids having completely misunderstood what was agreeing to!

It's all too easy to wish days away, long for my old life and count down to the landmark
s: end of august= end of chemo, christmas= end of this whole thing hopefully. And there are definitely days when i just let myself get soaked.

But the truth is, there's so much i never would have gained if it wasn't for this situation (including the surprise Wii dad ordered for us that arrived this morning-amazing!) Learnt i have THE most incredible family and friends. Sounds cliched, just don't have the words to express how overwhelmed with support i've been. Other pros include being able to eat what i like and yet get into a size 10! The con to this one is the INSANE toilet time, and that can't seem to get weight to stablilise atm- big side effect of chemo is diarrhoea and i already had it following surgery. Still- new clothes :D And shoes, even tho my feet haven't shrunk....they seemed necessary.

Popped back to warwick for a couple of days over the weekend. It was awesome! Sooo good to see everyone at Stu and Demelza's BBQ, and just hang out and be normal :D Also got the most beautiful giant card signed at the medschool- i just keep reading and reading it. Can't wait to go back up for the ball on Fri. Was supposed to be having chemo that day, but with one wave of his magic wand dr cool declared 'you shall go to the ball!' and moved it do the monday. I do love him quite a bit....

'Big chemo' tomorrow-it alternates, one week just the monoclonal antibody, one week everything including 3 days of condom fun. Joy. Am tempted to name it and treat it like a pet, just to spice things up a bit...

Thursday, 28 May 2009

Freedom from the condom!

Eeeek as i type this the rest of the year are in their first end of term exam- scary scary times! For once am quite glad to be in bed rather than back at med school ;) SO hope it's going ok and there aren't any upside-down-back-to-front, let alone left field, questions... GOOD LUCK for tomorrow guys!

Have finally been disconnected from my first lot of chemo wooooo! That's a picture of the wee condom containing device i was rigged up to, and didn't look at all strange carrying round a garden centre chosing fish...

Minor setbacks with this included a clamp closing and the infusion stopping (doh) and then going back to the hosp yesterday to find it had closed cos of a powercut! Slightly worrying, apparently the generators hadn't kicked in and all the patients had been transferred somewhere else... Not ideal :s Initially looked like was going to have to go somewhere else to have it out, but thankfully upsteped the director of nursing who was doing a training day. She seemed very excited to do something hands on again (and reassure us she was fully trained!) and kindly freed me :D Such a nice feeling!

Back in tomorrow for more of the monoclonal antibody (don't expect anyone to follow this chemo malarky regime-am thoroughly confused myself!), which last time just made my fingers a little tingley so am optimistic about not feeling too rough :) Mum has also bought me pretty much every magazine tesco stocked yesterday, so intend of spending the 2 hours planning a new wardrobe...


Saturday, 23 May 2009

Chemo part 1

Hey hey!

Sorry for delay in putting anything new up- been a bit of a busy/yet apatheticy sort of week but until steroid a clock tomorrow hopefully should be a lot more bouncy for a few hours! I'm so so so sorry for all the calls i should have returned and texts i should have sent, will endeavour to do better in the future (esp miss lalloo...)

So chemo part 1 yesterday!

Arrived at 9.30 to have portacath inserted by dr portacath (who was quite attractive- a very pleasant surprise!). The anaethatist (dude in charge of my sedation) also reminded me of Mark from ER, so that was quite exciting...Due to sedation however i missed the reasoning between themselves and the nurses that concluded coating me in bright orange iodine from my chin to the base of my left boob was completely necessary for an inch long incision on my collar bone. Am still half jaffa cake!

Chemo itself was a much more lengthy process than had expected, with multiple flushes of saline and glucose between everything. Despite first infusion taking place at mid day, didn't get onto the 'proper chemo' until about 8 in the evening and, despite being home now, is still going . How one might ask?! The answer lies in what resembles a clear baby themos containing a saline filled condom. Obviously. The pressure of the saline in the condom presses on a little tube inside it, containing the chemo, which gets pushed up thro a tube, entering directly into the jugular vein at a constant pressure. Tada! Genius...

Worst part so far has been the result of the steroids, which have been prescribed to prevent nausea etc i belive. Until about an hour ago hadn't been able to stay in one place or do one thing (even watch tv) for more than 5 minutes at a time. Doesn't sound nearly as horrendous as it was...just didn't know how to deal with it at all.

Think the time on this blog is all mixed up (its now sat eve). Going back in on monday to have the tube removed, as infusion should have finished by then, then back in on fri to have more monoclonal antibody.

More soon! lots of love :) xxx

Thursday, 7 May 2009


Heylo again :) <-- i wonder if that will turn into a little smiley face on the proper thing or stay as it is...oooh hang on, i can add images!! i could just add a little smiley face. Let's see...
Oh my god it's MASSIVE. And i seem to have very little control over where it goes! I shall work on this for next time...
Went to see my nice surgeon yesterday (bowel as opposed to future liver) for follow up appointment. She was really pleased with the scar, which was a massive relief as can't start chemo til it's fully healed. Still a little oozy right above umbilicus (aka tummy button...seems so pretentious putting in the few big words i know, but scared if i don't use them, going to forget them!) Can see that new tissue is forming tho.
Other great thing about scar improving is that we can go on holiday for a few days! So on Saturday mum, dad, rob (my bro) and i are off to the New Forrest for 4 nights. Hotel looks gorgeous and they have a lovely looking spa in which mum and i are intending on getting thoroughly covered in stuff and prodded and poked for a few days... So so pleased it'll give mum and dad a break for a few days as well, and a bit of a change of scenery. It's by the sea!
...mmmmm just be brought glass of wine and bowl of cheesy puffs, things could defintely be worse.... ;)
Other bits from the follow up appointment- as soon as the surgeon came in and took one look at me she informed me i was anaemic (low in iron). With hindsight i can now see the Casper comparison. Fun new discovery: claire - half a colon + iron tablets = a toilet full of pond water. I'm so sorry...bwa ha ha....ha
Probably means i'm also going to need a blood transfusion before starting chemo, which is only a day long hospital procedure, no need for overnight malarky.
One of the main functions of the terminal ileum (the part of the small intestine i now don't have) as i understand it, is the absorption of vitamin B12. This means not matter how much of it i eat, it's never going to get into my system. Surgeon lady has therefore suggested having injections of B12 every 3 months. Strikes me as a good plan, and relatively hassle free.
Finally she brought up a fun new finding from pathology, the department running lots of tests on my colon tumour. Not sure i fully understand it, and the wine is starting to kick in (half a glass-Norv ud be ashamed!) but will do my best to explain it as i see it.
Depending on where a tumour has arisn from, it will have different 'markers' on it's surface. 98% of those starting in the colon are positive for ck7 and negative for ck20 (or the other way round- i can't remember. These might not even be the right numbers. Or letters :S). Mine's backwards, positive for the one is should be negative for and vice versa.
This means one of 3 possibilities:
1. I'm just in the 2% that are odd but are standard colon primaries
2. The colon tumour was a secondary having spread from somewhere else yet to be discovered
3. I really am a freak, never to be explained by medical science
Altho i think an element of 3 will always be true, all concerened are pretty convinced it's possibility number 1. Logically, colon cancers very very very rarely spring up as secondaries and bearing in mind mine had got to small pinapple/bi-grapefruit size, we'd know about another primary by now if there was one. There are also the 12 polyps that were found on the endoscopy that scream my gut was prone to doing this sooner or later, backing up the case...
Right, enough cancer for a week! Got so much to look forward to: big fun warwicky visit tomorrow, holiday, and going to see Giselle in covent garden with shell next weds...gooooooood times.
You have no idea how much your messages on here/facebook, texts, cards etc mean to me. One always seems to appear when i start feeling the tinyest bit down-like magic! Thank you so so so much.
PS i'm having issues getting it to space- sorry if this is all scrunched up!

Friday, 1 May 2009

An afternoon with an oncologist

So went over to Mount Vernon (hospital just north of London) yesterday to meet my shiny oncologist-the dude who's going to be in charge of all of my chemo and treatment from now on. Was really impressed- not only was he really positive and straight talking, he's also mastered the rare art of being able to use the word 'cool' despite being 50+, without inducing cringeeeeee. Think this has earnt him the right to be referred to as dr. cool from here on in...

Treatment plan is as follows:

- Chemo with 3 drugs.

2 are the standard ones used for this type of cancer: Oxaliplatin and Capecitabine. Have no idea how to pronounce either...

The oxaliplatin is IV, and i'll have a line put in just above my clavicle which will stay there throughtout the treatment, for it to be fed thro each time. Main side effect with this one is tingly fingers and toes (peripheral neuropathy) which i didn't think sounded that bad, but apparently can be unbearable. We shall see!

The capecitabine is an oral tablet which i'll need to take once a week, but can take at home :)

The third drug is the rather fancy one, which thankfully the private health insurance is covering! They need to do some genetic testing before confirming this one (to see if the cancer is positive for k ras). It's called Cetuximab and is a monoclonal antibody. It basically targets the cancer cells by recognising a particular protein on their surface, and stops them from replicating. All very clever... and totally over my head, but sounds like good stuff. This will also be given every 3 weeks with the oxaliplatin.

So the wicked news re. chemo is that i'll only have to go into hosp once every 3 weeks and apparently i won't lose my hair! The only bad news is that the major side effect with the cetuximab is that you get a rash on your face that makes acne look like a mere pimple :s Twisted part is the worse the rash, the better it's working- so need to get in the mindset to celebrate the unsightly! hmmmm, might take some logic adjusting...

-Liver resection

This part is so cool/clever! After a few cycles of chemo, if the tumours have shrunk sufficeintly, i can go to Hammersmith to have this mental surgery done. Basically they remove half the liver, block the blood supply from the other half (with a portal embolsim?!) and wait for it to regenerate. Few months later, they then do the same with the other half- and voila, new liver! Just like that...


Will be having another CT in the next week or so, as the last one was before the colon surgery to see where we're at.

Dr. cool was also keen to get a PET scan done once chemo has started. This is a very fancy scan that's the gold standard (as i understand it) for picking up cancer. Reason it can't be done at the moment is inflammation confuses it, and wound hasn't fully healed yet. Mass confusion would ensue.

-Fertility bits and pieces

Basically looks like going to leave it in the hands of the gods! Egg harvesting etc takes 3 months, and as we're hoping to start the chemo in the next 3 weeks, really wouldn't want to put it off that long. Complications also include the fact that embryos freeze better than eggs, so would have to go on a sperm quest...i thought this sounded like quite a lot of fun-we could have organised a sports day, with wheelbarrow races and mini obstacle courses and things! But sadly not to be...

There's no evidence at the moment that these treatments do affect fertility, but as dr. cool pointed out, they're rarely administered to women of child bearing age and even more rarely to those who haven't already had their kids.

Another consideration is that this whole cancer situation probably cropped up due to something being slightly skew-wiff genetically, and i'll probably need genetic councilling before conceiving anyway.

Whole thing bit of a mind f**k as do desperately want kids one day, but at the same time not really top of priority list atm and i think ONCE i'm thro this i'll be so grateful it won't be nearly such a big deal. Plus i'll believe anything is possible :)

Tuesday, 28 April 2009


Oooh have just noticed can play with colours and things-how exciting! There's a very strong risk i could get carried away and make this impossible to read, shall try to curb the urge...

Have just said goodbye to my incredibly sweet but incredibly ditzy district nurse. I'm not entirely sure if she's just nervous or has been involved with wounds for too long, but the conversation everyday consists of her muttering dressing brand names at me and asking my opinion on which ones to use. I know nothing of dressing brand names. It gets very awkward...

On the up side tho she's off for a few days and wound seems to be healing a bit better :) It had been oozing quite a bit (clear rather than pusy) and found out yesterday a swab they did when i was in hospital showed some infection by coliform bacteria. If this took hold, would be very inconvenient as beggers are resistant to everything except IV antibiotics, which would mean going back into hosp boooooo.Thankfully tho, there don't seem to be any signs that they are winning so fingers crossed not going to be an issue.

Over last couple of days felt SO much better, both physically and mentally which is awesome :D Been lovely having big/little bro home for the weekend and feeling much better equipt to enjoy peoples company and attempt the multiple activities people have sent me to do! Adjusting to daily goals being a little different compared to pre-op- was oh so chuffed to make it round the garden 3 whole times yesterday and stand long enough to feed the fish, as well as eat an entire Mcchicken sandwich! Oooh also left house for first time since op to collect chris from station. Admittedly was in pjs and dressing gown, and from the looks received probably shouldn't have got out of the car, but most amusing...

Provisionally got an appointment with the oncologist who's going to be organising chemo on thursday, dependant on some scans making it to him on time. Know very little about it at the moment, just that it's going to be for 6 months twice a week, IV and in London. Other things that need to be considered before hand include a fertility consult, having some eggs harvested and frozen in case the chemo affects my fertility. Even tho it's another procedure, kinda like the idea of this one as it's very much looking to WHEN it's all over and the future :) Plus it's all very futuristic and sci-fi, my little eggs sitting on a shelf somewhere just waiting for me/sperm!

Thank-you soooo much to everyone for the continued support-still can't get over what wonderful friends i have, it's mental! xxx

Saturday, 25 April 2009


I'm not going to lie-not at all sure about this blogging business. More how it all works than anything else! Am slightly afraid having set this up i'll never be able to find it again, so if this is the only post til the end of time you'll know why....

Despite my complete ignorance on the subject, since being diagnosed with cancer (booo hiss) a couple of weeks ago a very good friend in a very insightful email suggested that it would be a great way to keep everyone up to date.

So here are the facts (particularly for the benefit of the medical school rumour mill ;))

-had tummy pain on and off since christmas, but nothing that seemed that bad

-went to GPs march time, and thoughts were IBS but had blood tests too.

- liver function and inflammatory markers were mental! in phone consult GP asked how much was drinking, did start to wonder if 5th year of student drinking might classify you as an alcoholic!

-came home after a few days in france and generally became mopey and grumbly

-my mum (who's a GP) suspected gall stones, which seemed to fit in beautifully with symptoms, site of pain, liver getting irritated, even referred shoulder pain that i'd put down to dislocating it in october (spectacular dislocation- waving arm in air, smooth...)

-went into hosp to sus out gall stone theory, but ultrasound showed no stones but 'multiple abnormalities on liver'. technician got very flustered with my multiple 'what's that, what's that?!' line of questioning and ushered me out, backless gown and all, as quickly as possible!

-had CT that afternoon which revealed tumour in large intestine (hepatic flexure for geeks, nowhere near the rectum MT!). Consultant was amazing at breaking the news to us, espacially bearing in mind as the idea certainly hadn't crossed my mind...colon cancer- you're supposed to be 64 not 24 aren't you?!

-amazing evening of support and pushing of NHS overnight stay policy boundries. not one nurse dared to question why liz was sharing the bed and chris was snoring on the floor, they just went about their business around them. don't know how i would have coped waking up by myself.

-UGH next morning the endoscope!! have never felt so violated in my life... not only do you have to drink 2 cups of this horrific salty-sweet drink masquerading as 'lemon and ginger' beforehand (which 'cleans you out' in a most alarming manor) they then put a camera up you. I think the weirdest thing is you're not out, but sedated and you have pain killers, but not nearly enough! in fairness, with hindsight, my gut was so screwed up it probably hurt a lot more than it does normally. as i said before, i don't think you're supposed to get colon cancer until you're much older, unless you have a genetic condition resulting in you forming 'polyps' which are basically pre-cancerous little tongues of gut. they found and removed 12 of polyps while they were up there, which is abnormal but not enough to warrent the genetic condition (apparently). they also took a biopsy of the tumour and are going to do some genetic testing...

-got to go home that afternoon, promising to return for surgery the following wednesday. was lovely to be back. highlights included:

all the cards, flowers, messages and presents-so humbling and strenghening (a word?)
dave and laurence's visit resulting in lo and my dad enjoying plenty of red wine and getting far too engrossed in discussions about cameras and showers
dvd evening and the premiere of some incredible nightware
trip to safari park with my rock-steady home girlies, and cha and manisha SCREAMING at the appearance of a bear, despite being in the car... ;) we missed shell.

-back to hosp on the tuesday afternoon for op on weds. obviously can't remember any of it (!) but was informed afterwards part of the small gut (the mesentary of the ileum) had decided to tangle itself around the tumour. so ended up having half of ileum and half of colon (up to splenic flexure) removed. Cancer had also invaded another area, part of the peritoneum, but all that could be found was removed. Tumour was apparently the size of 'a small pinapple'. When my dad asked what that was in cms, he was told 'like two grapefruits'. Apparently to be a surgeon you've got to work in fruit!

-was in hosp for a week. first 2 days were brilliant as i was getting some kind of iv opiate infusion and an epidural so couldn't feel anything and was in a great mood! then they cut me off, pretty much cold turkey :( tough times... had lots of lovely visitors bearing baskets, dog toys and asda versions of childhood games but unfortunately all i could really give back was bad chat, nausea and a front seat view of my catheter bag filling.

-been back home since tuesday (so 4 days) which is lovely. parents are angels, and feeling better everyday. district nurses pop in everyday to change dressing. wound is about 15cm long, and runs right thro tummy button as if it wasn't there! part of me thought they'd go round...aim now is to put weight back on and improve mobility as much as pos. chemo supposed to start around 6 weeks after op and want to make as sure as hell am strong enough for it to all go ahead as planned. next stop, liver!

If this whole thing has shown me anything so far, it's how blessed i am with my family and friends-it's insane. I think i've only cried 4 or 5 times, but at least 3 of those times were just being moved by something written in a card or text. No idea what it means to me.

Hope this is what a blog is supposed to be! xxx