I’ve had more than a few very good days now of practically no chemo side-effects. Sleeping well, and no bolt-upright-Frankendoze, neither - proper lying down sleep. Appetite returning, nausea gone, and no pain. Just writing that down seems like dangling my ganglions in fate’s toothy face, but it’s the truth.
A routine starts to become established.
• Wake up coughing at around 4.30am. Go to the toilet, drink water, cough a big more, go back to sleep.
• Repeat around 7am. Read/doze until around 8, or later, depending when Emilie gets up to turn the heating on. (I no longer have any environmental concerns whatsoever. Any pretence to being a moral human being have long since evaporated. It seems when the cards are even the slightest bit down, I AM IN IT FOR MYSELF.)
• Get up and eat breakfast: various digestion-aiding drinkable sachets, grapefruit, morphine, cortisone, toast (cutting the salt-laden Marmite slices with jam), Earl Grey tea, mouthwash (normal plus anti-fungus), codeine. Half an hour after getting the rest down: chemo tablets.
• Mid-morning: Try and do some kind of semi-justifiably physical activity, like the washing up. I did the dishes from last night this morning, and at the end was absolutely exhausted from all the standing up and bending up and down. I am treating this as good - if I can get my jerks from useful and internal household chores, so much the better. I can’t avoid leaving the flat again forever, but the more I can legitimately do in my little norm-bubble without “rationalisation!” pricking too much, the better. Sort of. Right?
• Coffee break: Stop to consume (eat? drink? it involves a spoon at any rate) coffee, vanilla or lemon-flavoured protein supplement. May be accompanied by green tea to aid digestion / swallowing.
• Late morning: Paperwork and sensible stuff. There’s always some form to fill in, some ancient long-forgotten job to complete (”must! box up that PS/2 keyboard to sell on eBay!”), or similar semi-legitimate activity to make me feel like I’m not completely wasting my days. The more this can involve wandering around the flat trailing my oxygen cord and moving lightweight physical objects from one place to another, the better.
• Lunch: more digestion-aid mixtures, and FOOD. My day revolves around meals. One is shared with Emilie (often this one), and the other will be another protein-fest that Emilie won’t necessarily share, not necessarily looking for the sumo-like growth rates that I’m trying to achieve.
• Sleep: at this point in the day, I’m usually about ready to read about four lines of a magazine before nodding off for anything between half an hour and until dinner time. The better I’m feeling in general, the harder I have to fight against trying to resist the kipping urge - it seems like such a waste of time when I could be doing useful stuff like, y’know, taking apart old hard-drives to find interesting-looking pieces of metal. But I really do need it. If I don’t, by nine or ten at night my head will be nodding into my half-a-whole-tuna and the whole night’s sleep cycle is buggered. But if I do have my shut-eye, the evening can proceed with…
• Protein supplement: either vanilla or lemon. Mmmm. Meaty. This can be done in conjunction with…
• Mucking around on the computer: reasonably self-explanatory. In truth, this kind of permeates the whole day - but this shouldn’t really be a surprise to anyone.
• Dinner: at around seven (early for the French, but I’m still partly on hospital time here). Same digestion-emulsions, morphine, food, mouth-washes, codeine, and then chemo and stomach-protector later.
• DVD: we’ve spent the last two evenings watching Kill Bill 1 and 2. Fantastic. And I could watch the hospital scenes with no squeamishness whatsoever, unlike the video for the new Hadouken single (gonzo charts on MTV2 at the moment) which has purple liquid oozing along guitar cables… wooouargh. Neo-rave and me are going to have issues.
And then more mouthwash and bed. It’s ludicrously pleasant and civilised, and I feel guilty that I’m spending my days like this instead of going to work. Not that I’m that effective working in my sleep, but still… I’m starting to feel almost indecently well. Which is making the fear of the next hospital visit, where I’ll find out whether the chemo is having an effect, or if we’ve all just been pissing purple into the breeze. Still - this is a week and a half away, and there’s no guarantee I’ll stay in this blessed wonderful state for the whole time. So I guess to hell with it and enjoy it while it lasts.
“Arthur and the Mimiaismmams” (or something) tonight - a gift from a work colleague. Better get started, or I’ll start getting the head-nod at the critical moment.
Love to all, and looks like the good vibes are working, dudes. Keep it up.
12 responses so far ↓
Zulq // October 21, 2007 at 11:51 pm
Mmm…. morphine and grapefruit, the breakfast of champions.
Could you email me some kind of postal address please? Preferably yours, ta!
P.S. You really must stop drinking water from the toilet.
giles (palmer) // October 22, 2007 at 12:44 am
are you sure you’re not confusing having cancer with being at university ? actually, now i think about it, you did miss out the consume 8 pints of lager bit of the university day….
i’m moving flats this week - well moving out of mine - i haven’t located my next one yet - i’m looking forward to finding out what a hermit crab with crap planning abilities feels like.
anyway, i’ve been packing everything up and i have put together a dvd-fest for you. i decided in the end to leave out the barbie vids - just couldn’t face telling my daughters, sorry - but i’ll pop spongebob in there, they won’t miss that and it’s great! along with that (avec ca) i have a pastiche of classics from any genre you care to mention (except maybe the really odd stuff like Russian Road movies - they haven’t caught on there yet). i’ll ship em tomorrow
+1 for the morphine and grapefruit combo.
Burrd // October 22, 2007 at 12:54 am
Hey Joe joe joe
I’m fascinated by your purple wee. I once nearly destroyed my eye and had green eye drops that made my snot green. I know it is already green but this was, like, day glow green.
Can you, or anyone else out there who knows, please email me the locale of habitude so Toby and I can send stuff of niceness?
sending some good ol’ hippie healing vibes xxxxx
James B // October 22, 2007 at 11:10 am
Excellent to hear there’s some sort of normality and routine to your life these days, even if it does involve taking a cocktail of drugs and (more worryingly) marmite.
Fingers crossed for yout next hospital visit…
giles (Mark E. Boy) // October 22, 2007 at 9:31 pm
Very glad to hear you have managed some Normalizification(TM) of life at home. All this talk of cocktails and breakfast and drugs got me thinking… You are in one of the most experimental culinary countries (that doesn’t mean what you think it does James) in the Western World. Somehow I had imagined a breakfast served as Crêpes Codeine with a Mouthwash Hollandaise, followed be Morphine en Croute. Still… it all sounds better than Escargots, which is of course all anyone ever eats over there. Bof.
Continue keeping your chin firmly in the up position (especially around plates of tuna).
*man hugs*
Peter Vickery // October 23, 2007 at 1:06 pm
I knew your dad at uni in the 60s.
I am inspired by your blog its great reading and as I have problems with my children too.
All the best - I look forward to your next entries.
Hilary S // October 23, 2007 at 8:38 pm
Joe’s blogggg…. the new and more fashionable friendsreunited?
philip newman // October 24, 2007 at 1:17 pm
hey joe
a bit late to this get together you have going on here, but just had to say hi to you and send wishes and take issue with the kill bill 1 & 2 plaudits. if you want some back to form tarantino take a look at the first hour of his latest. and while reading through your current diet, i can’t help thinking of the folk who hang together on my street corner all night dreaming of a 7 course like that. will be thinking of you and your next hospital visit. your blog is amazing. xxx
Al Wood // October 25, 2007 at 8:18 am
Go Team Joe!
You are the reason Steve & I have a dusty guitar in our loft (my excuse is it’s too big for my hands…still talking about the guitar…
and Steve refuses to let me sell it so we need another dose of Joe’s guitar inspiration when you are back in blighty!
Sending oodles of ‘le positive zurbitrons’ (Franglais for the little people that live in your tummy who let off wiggly fireworks to give you that warm feeling inside - ahhhh)!
Love,
Al x x x (Steve’s message got lost under your ‘Routine’ heading after he was bashed on the head by a rather quaffable fruity red…again)
PS. Stunningly superb use of the word ‘indefatigable’ in an earlier post - tres bravo!
Robin Brooks // October 25, 2007 at 8:48 pm
Joe,
Only really met you via Dave’s get togethers. But when I found out that God has been crapping on you from a high height I had to write. It’s gutting when anyone gets cancer, but particularly when I regard you as ’such a nice bloke’. Kinda made me go a bit giddy when I found out. Bad people get cancer, who cares, but not guy’s like you. It’s a test in life, you will get through it and something postive will come out of this. Flick the old ‘V’s up to him upstairs and grow your hair back really long again !
Rob
Helen // October 26, 2007 at 8:34 am
Hey Joe
*images of Trinity Street come flooding back*
Sending lots of positive vibes your way. I tried to think of something funny to say but apparently my grasp of the English lanuage is a bit rubbish this morning. So I’ll stick with sending you lots of positive vibes and useful stuff and hope that the menu gets a little more varied in time!
Take care xx
Melina // December 20, 2007 at 8:27 pm
very interesting. i’m adding in RSS Reader
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