Yes, folks, I'm back again, this time with ~residential benefits~ (this is me trying to glam-up the fact that I am now an inpatient... shhhh, humour me). I am actually here for my second cycle of chemo, but I didn't really natter on at you much about the first cycle because I was indulging in a period of Intense Wallowing (to which I think we are all entitled every once in a while) and doing nothing except watching all of season 3 of Orange Is The New Black in a matter of days and crying at anything that had even the smallest whisper of emotional weight (so far this has included such gems as Don't Tell The Bride, Wreck-It Ralph, and, most recently, the music video to Rachel Platten's Fight Song.) I have been a mess and an emotional liability and I would not have had a chance in hell of producing any sort of blog post that anybody actually wanted to read.
Totes emosh. Sob sob. (Image source)
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- May: PET scan reveals that the first lot of poisoning had a good solid go. Chemo Friend (see here) gets sent home with a solid 7/10 and a sticker that says 'Well done for trying your best!.'
There's still a decent bit of mess to clear up, and it's the nasty stuff like red wine in the cream carpet and cat wee that you can smell but you're not really sure where the cat actually wee'd. Standard Febreeze isn't going to cut it this time. The only problem is that the doctor isn't certain what is actually going to work better than Febreeze and wants to ask all his science buddies their opinions. - June-ish (do you actually expect me to remember when things happened???): I'm referred to a shiny new team of consultants - I'm going to call them SUPER specialists for the sake of this post because it makes everything sound it a bit more exciting. These SUPER specialists deal with patients of all ages, not just 16-25 year olds, so I have to see them in the decidedly un-shiny main outpatients department, or the haematology outpatients department (even less shiny) and it means my day trips to the hospital are now adorned with 300% increases in waiting time during which I like to bite my nails to stumps, listen to my tummy rumble, and picture in Ultra HD every single worst case scenario my head can conjure. Turns out my doctors only take SUPER long because they're SUPER competent, and need lots of thinking time to do their extra special clever science. So great doctors but they only confirm that everything is rubbish and we need to try chemo NEXT LEVEL in order to reach the chemo BOSS FIGHT. Before I'm allowed a go at the boss fight I have to create a unique system restore point so I don't die permanently.
In normal-person speak this is two or three cycles of a different type of chemo and another PET scan, followed by a harvest of stem cells from my own blood. Provided my PET scan shows full remission I can then have a single cycle (6 days long) of high dose chemotherapy to reset my immune system to zero, and hopefully wipe out every single sneaky little cancer cell in my body. I would then be given my stem cells back to give my body something to rebuild with. Cue a recovery period of three-six months. I'm not getting a whiff of Durham until October 2016 at earliest. SUCH FUN SUCH FUN.(Image source: scientificphilosopher)
- Also June-ish: This saga doesn't come without its BONUS side effects, the most notable of which is the near-certainty of total loss of fertility. March off to the gynaecologist under the impression that we can faff about with hormones and freeze some lil Abi sprog eggs for such a time as I am not twenty years old and also not in possession of a body where a significant minority of cells is staging a mutiny. LOL AS IF IT WAS GOING TO BE THAT EASY. Ovaries apparently still a bit too chemoey from Poison Mk I, so even with a month of mood swings and chacha invasion, the chance of success is so small it can probably be disregarded.
- Meanwhile: THE RETURN OF THE DREADED PAIN. The nerves in my chest have decided now is a really good time to resume the party that was so rudely interrupted back in October (see here for deets). It's the sort of party that starts off as a get together with six mates but somehow escalates to involve the whole of year eleven, most of the booze aisle from Home Bargains, a 4576789% increase in STIs and a minimum of three ambulances. Lots of morphine, Abi permanently sleep-deprived and sad. Get into that terrible state of being so inside myself that answering texts is pretty much unfathomable, and become swathed in a fog of anxiety, weird guilt for being a bad, incommunicable friend, and self-imposed loneliness. Starting chemo is pushed to the top of the to-do list, wave bye-bye to the hope of sprog egg preservation. Wrestle with conscience. Cry, a lot.
- June 18th (wow a proper date so proud): Roll up to the hospital at 8am, sleepy and probably high on narcotic pain relief, clutching a hot water bottle to my underboob like it's my only friend. Place dignity into ceremonial box to be rescued at a later date. Get a line into my collar area for the delivery of chemo, and watch with a glassy sort of smile as a total stranger cleans blood from my right boob. (As a side note, so many people have now seen me topless that I've stopped caring. My boobs are the only part of my body that I'd describe as bloody (literally in this case lolol) spectacular, so in all honesty, if you've caught a glimpse, you're welcome.) Get admitted to the ward and lie on my bed feeling sorry for myself as I wait for the Ritual Poisoning to begin.
This Poisoning Ritual is known as ESHAP by the mysterious laws of science. You might assume that five letters means five drugs, but this is not the case. Here's how it works as far as I understand it (Disclaimer: lots of science was likely harmed in the making of this list. Sorry, science):
E - Etoposide. simple enough so far I guess?
SH - Um... Shite-arabine? There's a drug called cytarabine in my regime and I can't see a C anywhere in this acronym so that's what we're gonna go with.
A - A steroid with a really long name maybe?
P - Platinum (which is actually called cisplatin but I can't even see one C in this acronym, let alone two so ???????) - The following week: Physically, surprisingly unpathetic, probably due to the vat of fluid constantly being pumped into my bloodstream alongside the drugs. Mentally/emotionally extremely pathetic. Don't leave my room nearly as much as I should, come extremely close to melting into a puddle made up of strawberries, trashy TV programmes, and overcooked pasta. Cue weeing in bedpans (to monitor... something. I'm still not sure what exactly. Maybe they just pretend there's important stuff they need to do with my wee when in fact they just need to feed it to the urine monster that's keeping their friends captive), fluid-retention-cankles, in-depth discussion of my bowel movements, rectal swabs, and doctors trying a little bit too hard to be cheerful.
- Tuesday June somethingth: After an interminable week I am finally released with what feels like an entire pharmacy. The next few days involve me not being able to stand up for more than 30 seconds or so without almost blacking out, lots of crap daytime TV and straight-to-VHS teen movies on Netflix, and migraines four days running. Finally things start to look up, I make it to my sister's final first year performance in Birmingham, buy myself the SHINIEST new computer and complete my induction into the world of video games, and celebrate my little sister's 18th birthday.
- July 8th: Return to the wonderful world of the Christie for cycle two of the Ritual Poisoning.
Which brings us up to now. I am currently sitting in the ~social hub~ (cringey name, cringey music, but it's not my room and that's all that matters) with my chemo pumps whirring beside me. I hope after enough of these magical chemicals, I will develop the mysterious ability to translate their noises into the deepest secrets of the universe. Or maybe they're just repeating the word 'arse' over and over again. Either way I'd quite like to know.
I approached this cycle of chemo determined for it to not be a repeat of last time. I have been here two days and already I have painted half a canvas that will eventually make up part of a communal painting of the Empire State Building (because why the hell not, right?), and got stuck on the second floor because the fire alarms have this really snazzy feature of disabling all the lifts, despite the fact that half the patients are attached to heavy wheeled equipment and cannot go literally anywhere without working lifts. If it had been a real fire I'd definitely have fried. Either that or I'd have had to orchestrate a careful leap using a parachute constructed only from empty fluid bags and sutures. I've also plink plonked on the piano with the music tutor (who was so amazed to have a patient who could ACTUALLY READ MUSIC), watched Iron Man, and successfully completed a not insignificant number of crosswords and crossword-related puzzles. I've worn actual jeans every day (weird, the psychological effect wearing real clothes can have on a person) and have determinedly not stayed in my room for as much time as possible. Overall I'd say I'm doing a pretty good job of not being a miserable sod. FOUR FOR ME GLEN COCO.
(Image found on giphy, I think the original source is a now inactive tumblr blog. If you have a more reliable source, please lemme know)
I had an appointment in clinic with one of my SUPER specialists before starting this cycle and I was fairly encouraged by the whole affair. The way it goes in general with cancer treatments is that they start with the most effective approach, and if that doesn't work, you go slowly downhill and get increasingly desperate until you get to your last wild stab in the dark which has only ever worked in two patients ever or something. I hadn't asked what would happen if this chemo didn't have the desired effective because I was scared they'd tell me that everything was terrible (for the thousandth time), but in this appointment we got onto the subject, and this doc told us about a new(ish) drug that they can't use yet because it's both very expensive (oh, classic NHS), and only licensed as third-line treatment (meaning they can only legally use it if they've already tried two other treatments and still haven't got the desired effect). I don't know much about it, but I have been led to understand that it's both much more tolerable than the chemo I've been having, and much more likely to drive me into a full remission with a clear PET scan. So it's nice to know this treatment isn't totally make or break. I'll probably still have to have some sort of stem cell transplant (most likely with my own stem cells, but possibly with someone else's if they think a next-level immune system reboot is necessary), even with this shiny new drug, because the high-dose chemo that goes with it gives you the best chance of getting rid of every last cancer cell and thus staying in remission. Most of my doctors seem fairly confident that it's still perfectly achievable in some way.
(Struggled to find a reliable original source for this image. If it's yours, drop me a message and I'll credit or remove as requested)
I would like to formally apologise to everyone I've ignored in the past couple of months. I know I've had a lot going on but I still think I really could have tried a bit harder to get back to you all. Thank you for dealing with me when I'm at my mopiest, and you deserve a special award if I've accidentally fallen asleep on you at some point. I know I've not been the easiest person to be friends with lately so it kind of amazes me that there are people out there who still like me. You're all absolute angels.
Big love, Abi xxx
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