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.

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9 responses to “Ups, Downs, Approaching… Prognosis

  1. Joe,

    Your strength of character is quite exceptional and inspiring.

    And I must thank you for keeping us all so eloquently informed of your progress, both mentally and physically, through this ordeal.

    Although I’ve never commented before, I’ve read every word as a paltry means to remain connected. I realise though that without a quick comment there is no way for you to feel the love for you I’m feeling as I read your words and think of you.

    Good luck for tomorrow. I will be thinking of you and hoping for the best.

    Love,
    Oli

  2. I agree wholeheartedly with your thinking on prognoses. Having defied medical science myself in the past, I often wonder if doctors aren’t a little better at telling you the size of the mountain, rather than whether you can scale it or not. What matters is that *today* you are either walking up it or stopping to admire the view. Yeah… I know it’s a rather clichéd analogy, but as always, you seem to be coming at this from the right place.

    Good luck with phase 3 purpleness. Keep climbing my friend and don’t get phased by stepping in the odd bit of goat shit.

    I’m going before the analogy crumbles completely.

    Hang loose. (?!)

  3. Avril and Howard

    There are so many good vibes flying across from England to Paris at the moment, all with your name on them, that we’re surprised they’re not affecting Eurostar speeds… Good luck with next Wednesday. We’ll be thinking of you. In the meantime, carrying on ‘botanizing the asphalt’ as Baudelaire put it in one of his more lyrical moments as a Parisian flaneur. I think he occasionally tripped over awkward paving stones too…or maybe that was the absinthe…
    Keep writing; keep thinking positive.

  4. Joe,

    You know I can’t help coming to these entries with my earnest, medical head, but each time I do, you up-end it with what you’ve written and make me laugh. I loved the image of you as Victorian street urchin, goggle-eyed at the beauty of Paris, and remain inspired by how present and honest you are to everything you’re going through.

    That said… (switch to stern medic mode)
    … you’re absolutely right about resting. I know it will feel like there’s lots you need to do but your body needs that time to recover, both from the cancer and the purple stuff – it’s probably the most important thing you can do. Sorry, don’t mean to nag. I’m sure everyone else is telling you the same – just want you well again…

    All my love for Wednesday – I’ll be thinking of you

    Big hug,
    Tx

  5. Hey Joe

    One day at a time 🙂

    You don’t have a crystal ball, and even if you did, they’re crap anyhow, so, as you rightly identify – one day at a time is absolutely the best way forward. *hugs*

    Sending lots of cross channel vibes, they’ve dodged the incredibly busy (and frankly scary) shipping lane and should be landing in a Paris suburb around now 😉

    Helen xx

  6. Fantastic positive and analytical thinking as ever 🙂

    Lots of sleeeep…. yes… sleeeeep….

    Just think of all the countless times you’ve really wanted to sleep and not been able to – now’s your chance to catch up with an absolutely clear conscience! 🙂

    Huge Hugs!!

  7. hi joe

    just want to echo the lines from all, and especially oli. do get the sleep you need in between the jaunts autour paris, and best wishes and all my thoughts for the next bout of deep purple.

    love
    phil xx

  8. a pressure cooker? wow – that takes me back to my childhood, IIRC getting the timing wrong by about 0.25 of a second turned sprouts from solid rocks to mush.

    Ah, those halcyon days when I thought that sprouts and carrots *should* have the same consistency as mashed potato because that is how they came out of the pressure cooker – “properly cooked” my mother called it. Still, it meant they soaked up the gravy nicely 🙂

    you could do some nice controlled experiments on how to cook the perfect sprout!

    enjoy the new toy, enjoy the retail therapy, enjoy each day as it comes and I’ll be beaming extra strong good vibes over the waters on Weds as I’m sure everyone will.

    Diane x

  9. Super great post. Honestly!

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