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 :)