Ben Non Bar None

So this afternoon, I checked into hospital for chemo session #4 to begin. It’s been a wonderful third week; the part of my cycle where I take no chemo drugs at all. I’ve felt almost completely normal, and have been wandering around all over the place in our neighbourhood with Emilie, sorting out bank accounts, food shopping, messing around with the attestation-printing machines at social security offices - just everyday life stuff, but it felt great to be able to do it. We went into the hospital Tuesday to drop off the CAT scan results from last week, and we walked there. To be able to do that under my own steam (with, of course, the portable Puritan’s aid) was quite an amazing feeling.

So, I’ve been letting myself feel quite cautiously optimistic. When chemo session #4 rolled around again today, I wasn’t really feeling too worried, especially after last Friday’s “not bad” news - I kind of expected to just come in to hospital, load up with the purple, and roll out again the day after. But in fact, things have turned out a little differently.

Firstly, it was the casino-heist medical team scenario again.  In sweeps The Prof’s second-in-command, accompanied by an intern (unlike in “Scrubs”, a proper qualified cancer-expert doc) and a senior nurse. They proceeded to explain that they were concerned by my continued loss of weight, and possible causes of this - it isn’t the chemo, as I haven’t been vomiting or suffering from loss of appetite. It’s true I’m now down to 50kg, down from 57kg at the start last chemo session, and this has been bothering me a little - especially as I’ve been eating like a horse. (I haven’t knowingly eaten horse in this time, even though I am aware this is an option in my new adopted country.) The docs went on to explain the comparison between last week’s CAT scan with the original from September hasn’t yet been done, and will in fact be hard to do, as the original hadn’t involved an iodine injection - my kidneys weren’t up to it at the time. So, they swept out again to go and do the comparison as best they could, and come back to let me know what they could get out of it.

Cue slightly sweaty palms.

I slept. A while later, The Prof’s second-in-command came back alone. She explained that the general improvements in my clinical health (better breathing, being able to sleep lying down, etc.) have been caused by improvements in the side-effects of the cancer - but that the cancer itself has not actually shrunk or diminished in any way.

To start with, this scared the shit out of me - so the chemo hasn’t really been working, after all? But, apparently, it has, to an extent - there’s been no spread, at least. Already, this is good. And apparently, with the rare kind of tumour that I have, it’s not uncommon for the normal, first-shot, mass-market chemo drugs I’ve been taking not to necessarily be that effective. Another piece to the puzzle is that since September’s biopsy, they’ve been slicing the cancerous tissue they extracted and have been subjecting it to all kinds of chemo chemicals, including the purple shit - and it turns out that Mr. Purple in particular is completely ineffective against this kind of tumour. So, the good side of this: I will definitely stop taking the purple component of the chemo, which is actually the most toxic part - that’s what’s making my hair fall out, for example. The… I hesitate to call it “bad”, so the “other” side is that they’ll need to change my chemo treatment to something else.

This is, of course, not necessarily a bad thing at all, but it still gave me a bit of a chill - of course I would have preferred to have heard “yes, the cancer is shrinking faster than a forgotten sprout in a pressure cooker, and we’ll just keep on going exactly the way we are in this semi-comfortable routine and you’ll be sound as a pound in six months”, but it was not to be.

So by this point, it’s 9pm at night, and the Prof’s deputy didn’t want to make a major drug-changing decision without consulting senior colleagues; absolutely A-OK with me. But she has some ideas. She wants to try a new, extremely expensive and “interessant” (promising) drug, and to do this, she will need to get all kinds of approval and possibly push some weight around - but she’s confident it can be done, especially as this is a teaching hospital I’ve found myself in. (Entirely by chance; my lucky stars are overdue for a good thanking.) But nothing further was going to happen that night - so, she sent me home, which is where I am now blogging this from. I’ll get a phone call early next week to let me know what’s going to happen. I may even (holiest of holy grails) be able to come in a receive treatment as an out-patient, bypassing the need for hospital food entirely.

Brief motivational gastronomic aside - for dinner at the hospital today, I was served my absolute least-favourite “meal” ever, which co-incidentally was the same I had just before starting chemo #2. That time, I threw the whole lot up several hours after ingesting The Big Purple in one silent, dry, completely undigested lump. So this time, I decided just not to eat it - hell, I’d eaten for about three at lunchtime (my dad’s salt-free chicken pie), and my innards just did not need soggy, wilted, boiled-to-string green haricot beans with a dry-but-still-somehow-disgustingly-limp lump of what was apparently veal steak haché, but could frankly just have well have been a round cake of unidentifiably-processed grease. Good god it was revolting. I just could not fork the stuff into my mouth. I tried. I failed. So I ate a good portion of the thankfully tasteless leek-and-potato soup, the accompanying apple and some bizarre cottage-cheese-type yoghurt thing, and left it at that. And now we’re back home, I have supplemented this with a slice of delicious leftover salmon-and-leak quiche with a lettuce-and-roast-beetroot salad, and my lucky stars have another item on their thank-you list.

So - no chemo for ce soir, nor for the weekend - something new and exciting begins next week. I feel slightly more like I’m venturing into guinea-pig land, but that’s the way it is - and clearly better to be trying something that might work than something that definitely isn’t going to.

More news, of course, as and when. But for now, we’re back in One Day At A Time land, and from that viewpoint, I have a blissful extra drug-free weekend to enjoy. A gift.

Night all, and hope all’s well with everyone.

So tonight, I had CAT scans of my abdomen and thorax as an outpatient at a clinic in the centre of Paris.  The ambulance firm had lost our booking, and eventually arrived to pick us up ten minutes before the scan was due to begin.  Not the best start - “Ambulance de Triomphe” not particularly earning the moniker so far.  Still, they got us there in a miraculous twenty-five minutes, through the Metro-strike-jammed chaotic heart of Paris, and waited patiently afterwards while we waited for the scan results.  And… for us to have a run-through of said results with the clinic radiologist.

That I was not expecting.  I’d thought we’d go, have the scans (in fact, scan singular: originally the lung scan was due for next Monday, but they squeezed both in tonight), and trundle off in merry ignorant bliss awaiting the hospital interpretation next week.  But in fact, I have news.

The stomach ganglions are “much smaller” - “hardly there”.  This (we asked several times) is definitely a Good Thing.

The lungs are “different” - there’s something there (the radiologist thinks an infection of some kind) which is blocking the view of anything cancerous beneath.  (And, incidentally, he thinks causing my chronic cough.)  But whatever’s beneath apparently wouldn’t have got any worse, or we would see it.  So this is a point of confusion, but not bad news.  I’ll see a lung specialist at the hospital next week, when I go in for chemo #4, and we’ll see what’s going on.

My liver and kidneys are completely clear.  There is no further spread or metastasis visible on the scans.  My kidneys are “nickel“, apparently - squeaky-clean; both stents (the tubes stuck between kidneys and bladder) still well-placed.  I’ve been seeing a lot more blood in my urine the last few days, but this is apparently almost certainly just the stents doing their thing, and nothing to worry about.

It’s very, very difficult to get excited and let go, and I’m wondering at my reserve (which I think is coming across in this post, too) but I think I can definitely say this is… not bad news.

Cottage pie getting cold, so no time for editing or reflection, so I’m just going to post.  Love to you all, from shocked-of-Paris.

So I’m writing this entry from back home. Less than 24 hours in hospital and I’m out again, not to return until the 23rd.

I’m still quite amazingly spaced and tired from the chemo, so I’ll keep this short and sweet: I’ve started chemo session #3, and am to book an appointment for a big deep scan of some sort (chest, abdomen, stomach, the lot) at a clinic of my choice (anywhere I can find with space, basically - the hospital itself is fully booked up) for two weeks’ time. The results of this scan will be compared with those from a similar scan I had done just before my diagnosis - and from this, the docs can see how well the treatment has been going.

So: a temporary reprieve from The Scene.

But there’s more - and I’m having real trouble here in trying to keep my hopes from spiralling up out of all control. On arrival at the hospital yesterday, I had a chest X-ray on my lungs, one of the places my (stomach-originating) cancer has spread to. Today, before checking me out, the doc who gave me the run-down on all of the above said this new X-ray shows “une amélioration” (an improvement) from the one I had before being diagnosed. My lungs are clearer than before I started the chemo.

He was careful to emphasise we have to do the big scan before reaching conclusions about how I’m progressing. But he was smiling.

When he left the room, I cried like a baby. I’m about to cry again now - time for a sleep, I think. I can’t let myself read too much into this, I just can’t - but my lungs, at least, are showing signs of improvement. Improvement!

I fear this post has crossed the line into fatal mawk. I’m stopping now, blaming the chemo, and going to see I have more success reading Galaxy Quest on my home DVD player than on my laptop.

Night all.

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…

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!

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…

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.