Embarrassing Film Admissions #2 and #3

So wide awake at about 4am, I decide to go against all the wonderful advice I’ve been given by a multitude of smart, right people (and which I wholeheartedly believe myself), and forego further sleep to watch “Batman Begins” on DVD. To my horror, I realise I’ve already seen it, and thought it was dreadful. (Sorry kind lender!) So I swapped it out for “Galaxy Quest” – which wouldn’t play. This was, I decided, a clear enough sign. PC – off. Three and and half wonderful hours of dreamless sleep later…


Still In Bed

Interesting – had to truncate that last post. Ran out of room on my text entry field. Nothing much more to say but – tongue, throat, lips, fingers (and thumbs in particular – why thumbs?) not quite responding as normal. Due to strategic slipper placement and prior tap temperature experimentation, I’ve limited the “cold shock” effect – but still need to drink slowly to avoid throat-stick. But – all in all, so far so good. Bring that purple shit on!

Blog From The Bed

My god, technology. I’m blogging this on my mobile phone, from my hospital bed. Live from the purple horse’s mouth!

So I’ll keep it short, as doing this on a keypad is really, really annoying. Chemo #3 begun last night. Almost the second the purple liquid hit me, I fell deeply asleep, so missed the bulk of the rest of it. I’d be a really rubbish journalist.

At around 3.30am I woke to find paralysis side-effects in full swing – but not, I fancy, as strong as last time. Got to be good…

Ups, Downs, Approaching… Prognosis

It’s been a few days of highs and lows – and happily, mainly, mainly highs. Sleeping really well, having absolutely loads of energy (mainly in the mornings), and generally feeling like a genuine human being who does real person things. Our toaster just expired, so we went shopping on Tuesday to the Bazar de l’Hôtel de Ville (BHV to its friends), a big department store right in the heart of Paris, to get a replacement. We were also looking for an autocuiseur, which in my rosbif ignorance I had no idea was an essential component in any French kitchen. It’s a hob-mounted pressure cooker (naturally appealing to my steampunk sensibilities) that allows you to cook vegetables or meat from raw (or, with the advanced models, even frozen) within about 3.6 seconds. And considering we’re cooking (ok, Emilie is cooking) almost everything from scratch these days to conform to my merciless low-salt diet, this is a really useful piece of equipment. Anyway, I digress – the point was, we had to go on the metro and everything to get there, and got to walk around real Parisian streets in central Paris again. We saw the Seine. Me! Little lost cancer boy with my oxygen tank and and black woollen beany and braces to hold up my Victorian chimney-sweep trousers! It was just great – we wandered around the shop like a proper bobo couple (actually, I don’t think “bobo” merits those italics, as the Wikipedia entry gives it American origins), comparing product features (“do we really need the optimum-tenderness PET-scan function?”), and generally having a grand old bourgeois-bohemian time. I even felt moved to browse round the menswear section and try on some hats, though I only bought sensible cheap winter socks. Good god, what have I become – a practitioner of retail therapy?

So this was wonderful, and so was the trip to the new Picard that just opened round the corner from us, where you can find high-quality reasonably-priced frozen fish and veg in freezer-busting quantities. So combined with the autocuiseur, we are now the masters of our own culinary destinies, and I am someone that can partake in ordinary life events like buying a toaster and doing the shopping. Ridiculous as it may sound, this really is a huge leap ahead.

The downs have been weirder. One of the reasons I’ve got so much energy at the moment is that I’m in the third, recovery week, of my chemo cycle. I don’t take any chemotherapy-related drugs for this whole week, to give my body a chance to recover slightly before the next purple assault. But I’m back in hospital tomorrow (Friday 2nd) for the start of chemo session #3, and this fact has been weighing on my mind all week. Apropos of nothing I’ve had sudden fits of tears of petulant self-pity, bouts of motionless, incommunicative apathy – all of which represent a temporary breakdowns of my (so-far, pretty strong, I think) resolve to stay in the moment and the day-by-day. However – Emilie, as usual, has been using her superhuman powers of conviction and positivity to bust me out of these funks, and order remains more or less restored.

I think we’ve cracked it, though. There are two things going on here. The first and rather mundane reason is that I’m just really, really tired. Despite sleeping well in general at night, I need a lot of sleep – and in my rush to be Mister Normal Does-Whatever-A-Normal-Can, my mind is pushing my body too much. Despite Emilie’s best attempts, I’ve sometimes been stubbornly skipping my afternoon nap (there’s just too much to do, dammit!), and it does me no good whatsoever. Whenever I do get some extra mid-day kip, I feel immeasurably better. And again, here’s where my incredible support network of friends come in, and here’s where I take my (today, green-flatcap-with-funky-yellow-buttons) hat off to y’all… the mind/body association comes up all times in emails and blog comments and conversations, from all sorts of different angles, and this all adds weight to the idea (constantly reinforced by Emilie) that I’m just not listening when my body says it’s tired. So – more napping needed. Point one.

The second took more figuring out, but I’m pretty sure it’s related to prognosis. At the start of the chemotherapy treatment, The Prof told me we wouldn’t know whether the treatment was actually working or not until after the second chemo cycle. Well, that’s… now. So I feel like there’s a moment of truth approaching.  Is it working? Will the spread have slowed down, stopped, or will it have even increased? How long is it going to be before I’ll know? Are they going to keep me in hospital until they’ve done all the necessary scans and analysed the results (which perhaps could take some time), or are they just going to plug in the chemo and kick me out the next day like last time, and pull me in for out-patient exams later? (What’s probably behind that one is… how long am I going to be back on hospital food?)

I realised that what’s been scaring me, and really scaring me, is this scene: I am in my hospital bed around next Wednesday, after having some X-rays and a PET scan earlier in the week, and the full medical team swings into the room like they’re about to rob a casino. The team consists of The Professor, who is the department director, maybe his deputy, and some number of doctor “interns”. (“Intern” is confusing, by the way – these are senior doctors, responsible for actual decisions governing my treatment – I still haven’t quite worked out why their titles make them sound like they make the tea for the proper doctors, who are presumably so high-and-mighty you never see them.)

This scene is basically a replay of the original “statistically, your chances are low” speech I got on the first cancer diagnosis, way back in September – the interns (docs) are alternatively glum-faced and sympathetically smiling, the prof is direct and positive and tactile, touching and hugging everyone from me to my parents to my friend Ari who happened to be visiting, but he’s still delivering bad news – but he’s smiling through it, and doing it in the best possible way.  “Your chances are not good, but our job is to make them better, and to get you through this.” And I trust him, but the fact remains: the chances are not good.

So, that was September. And this last week, I have been living in fear of a repeat of this scene, with More Bad News.

But! What I have been forgetting, and what I have been reminded of by Emilie, by emails from friends, from re-thinking old conversations and old communications, is that this scene hasn’t happened, and is not. Necessarily. Going. To. Happen. Even besides trying to second-guess the likelihood of the news been good or bad, I just can’t tell in advance, and mustn’t try – I just need to keep doing what I’ve been doing so far (not without success, I humbly submit), and taking each (joyous, at the moment) day as it comes. And I know this; I’ve just somehow forgotten. It seems I need constant reminding, and luckily, it very much seems like I’m getting it.  From all quarters.

And another thing – even, when this scene arrives, if the prognosis is bad – people beat the shit out of prognoses all the time. The docs are professionals – they’ll think of something else to try. It could be unpleasant, it could be very painful and risky, and they could end up telling me some very saddening things – but I don’t know this is going to happen, and worrying about will they / won’t they before the situation comes can only have a negative effect. So there is only one thing I can possibly do – carry on living, planning, enjoying, taking care of myself (with help) – as I’m currently doing. It’s the only thing that makes sense. It’s so clear.

But when I haven’t had my afternoon dodo, cancer boy is a miserable fucker, and all this goes out the window. So… exercise is good, but I need my beauty sleep too.

So bonne sieste, toute le monde. And thanks again for being here, and for your emails and comments.  Love to you all.

A Good Walk

My brother Pat came to stay Tuesday and Wednesday, taking advantage of a rare gap between Smilex gigs and accountancy exams. Wednesday morning was sunny if flipping freezing, I’d slept well, and was feeling pretty well stoked with Marmite and plum jam. The oxygen company had just dropped round a new, bigger better portable Puritan Bennett unit which needed capacity testing, so we decided to exorcise some demons and go for a walk.

Everything just fell into place. It was great. I’d swapped my heavy jeans for some light summer trousers, which stayed above the waistline without needing my belt set to “colon-crush”. Ski-socks kept my toes toasty, and somehow made my shoes fit better (increased maneuverability for counter-dogshit/minor pavement variation action – can my feet really have lost weight)? Emilie carefully equipped me with a sophisticated layered system of t-shirts, zip-tops and a ski-jacket to regulate upper body temperate depending on whether we found ourselves in indoor, outdoor, moving in light wind, or stationary in sunshine configurations.

We had a mission: go up rue de Belleville, past the metro Pyrénées, and get some groceries and bottled water. I’d never actually been to this part of rue de Belleville (we hadn’t moved here long before I started getting sick), and was curious to see what our neighbourhood actually looked like. Turns out it’s great – friendly, not too crowded, nice atmosphere, cool green-grocers and butchers and fromagers and boulangers and, well, a nice part of town, right on our doorstep. This, plus the sunshine, plus the fact my lower limbs co-operated quite happily to give a pretty convincing facsimile of normal walking, lifted my spirits beyond measure.

We took things slowly, and I didn’t run out of breath. Puritan Junior excelled itself, surreptitiously delivering a steady supply of oxygen up my nose tubes without making me sniffle too much. And I felt like… well, I felt just on top of the fucking world. Like this was just three people, going for a walk, getting some food to eat. I was almost singing.

That was a couple of days ago, and of course there have been some ups and downs since – but that really felt like a landmark. Do WordPress do polls? Would you like to see more misery and suffering in this blog? Answers to the usual address…


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.


My post rate really does drop off dramatically when I get back to my always-on internet connection, doesn’t it?

It’s wonderful to be at home. Not that I have any problems whatsoever with the hospital, but it can’t compare to living what sometimes so closely resembles our normal life that I can forget that it isn’t. The downside of this, of course, is that the occasional bumps into reality are a little harsher – but, as I have to remind myself, that really is a small price to pay.

For example, we went for very short walks yesterday and today. Both times my physical (and mental) limits shocked me – I’m out of breath within seconds, my leg muscles just don’t behave in any kind of reasonable, co-ordinated way, and in short, the world seems very big and scary. There are all kinds of sights and smells which are absurdly overwhelming – someone walks past smoking and I almost need to stop and shake after them in rage. I want to cry in the street because I’m bumbling along focusing on getting one foot in front of the other without tripping on some millimetre-proud paving stone, one hand fisted in my jeans pocket to stop my trousers falling down, all the time my entourage kindly pretending this is how people behave – while everyone else walks past at a normal pace, just doing things… normally. But this, really, is as bad as it gets, and when I think (or am reminded, for example, by the disabled kid in the pushchair at the supermarket) of how bad it could be, I feel ashamed and selfish.

And then we get home, and I sit down, and someone makes me some herbal tea, and we put on some music, and after about ten minutes my breath returns and life is normal and my spirits are restored. And everyone lets out their breath and can stop tiptoeing around me.

My parents are back from Oxford after a couple of days’ break from their caretaking duties, and are currently making a big and somehow miraculously low-salt stew in the kitchen. Emilie is emailing friends and sorting paperwork, enjoying the break from her caretaking duties. I am guiltily posting to the blog, chewing down a (75% state-reimbursed) protein shake which, along with my hospital-advised two big portions of meat or fish a day, should help put the poundage (“kilogrammage” just won’t roll) back on. After dinner, we have a selection of DVDs to watch that various people have lent, given, or provided for with incredibly generous Amazon gift-certificates, and really, I have to say – life is good.

So what else has been going on? I’ve shaved all my head hair off to avoid seeing it fall, which is the coward’s way out but the hell with it. Chemo side effects were a little stronger this weekend, but still thankfully nothing major – touching cold things, or going from a hot room to a cold room, has been provoking a crazy and disturbing tingling paralysis in my fingers and hands and lips and tongue, but this is less marked every day and is apparently completely to be expected. The big purple needle replaced my appetite, which had grown to big rumbling dog levels, by nausea – but I’ve got other drugs which stop that being a problem, and my desire to eat stupid amounts of flesh and vegetable is gradually returning. I had big comedy swollen feet on Sunday, which I panicked came from too much Marmite messing with the cortisone, but the hospital reassured me by phone (or rather reassured Emilie, who really is much better at this talking French thing) that it was more likely down to mon petit cul rouquin not budging from its comfortable Ikea chair the whole day – and indeed, after a much more active Monday, feet went down and spirits went up.

If I had to give up Marmite for breakfast, that really would be the end of normal.