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

ooops it's been a long time!

hey!

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

A very eventful week

Hey!

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

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

5 down 1 to go!

Bonjour!

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

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!).

http://www.chemoangels.net/

Just thought it was such a lovely lovely idea!




xxx

Livers and spice and all things nice

Hey!

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

http://www.justgiving.com/kopwarwick

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

Lots of love xxx