Ben Non Bar None

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.

(Thu Oct 11 2007)

So chemo round #2 starts tomorrow, but I am not thinking about it. I am thinking about which terrible DVD I am going to watch tonight (I think Swordfish - never seen it! Know it will be great/awful!), and I am thinking about the short story sequels that will be in SteamPunk magazine issues #2 and #3 (delivered by Graham), and I am thinking whether my French is going to be good enough to understand Blacksad - Quelque part entre les ombres (from “Monsieurs Glover et Lally”, which arrived today).

I am thinking about how lucky I am to have friends.

(Fri Oct 12 2007)

Roundly and correctly mocked by the entire night nursing staff of the oncology department for watching Swordfish last night. I swear I had my blood pressure taken twice more than usual just so that everyone could come and see for themselves that I really was watching that appalling crap. God, what a terrible film, based on such an offensive and dumb-headed premise and no no no no I don’t even want to think about the stupid thing any further in case I accidentally do myself some permanent damage. Of course it’s completely my own fault for picking “the blockbuster that has everything” over “an elegaic film about childhood, the movies and Sicily…Tornatore conflates the sacred and the profance beautifully” (Cinema Paradiso, also stashed and available in my little hospital cupboard). Where does this desire to watch stupid, horrible trash come from? Why would I still pick up and browse a copy of Heat magazine? I need more breathing exercises. I am a long, long way from enlightenment.

Chemo starting any time now, soon as the big needle is found and enough purple liquid has been wiped and collected from the rims of Satan’s coffee cups. (Bet you’re glad I said “coffee cups” there, aren’t you. I certainly am.)

The big news for today is that I am getting out of hospital tomorrow morning. Yes, at 11am on Saturday 13th, I will be whisked home by luxury private ambulance to continue chemo round #2 in tablet form. Of course, I cannot believe this is actually going to happen, but I’ve heard it said by an old doctor and a young doctor, and even more convincingly by one of the nurses who had it on a clipboard. So I am allowing the faintest tickle of wild, boiling joyful hope and expectation to stir my be-cathetered breast.

Paris’ private ambulance scam, by the way, looks like a great business to get into. I can’t believe these things can be regulated - all you seem to need is a knocked-about transit (the more dents, the more authentic) with enough room in the back to get in a stretcher, patient and big dirty blanket, and maybe a single passenger seat (without working seat-belt, natch). Working fixings for the oxygen cylinder also seem to be optional; on the way back to hospital last time, the little tank of pressurised explosive gas was wobbling around in a very jolly manner. Presumably it’s there to finish off any survivors from the massive irony fallout a crash in one of these things would surely generate - although at least the dudes don’t try to drive like real ambulance drivers (i.e. like a standard Parisian driver). They’re not above trying to use the siren to budge traffic, but (like for genuine emergency vehicles) no-one takes much notice of this at all. In theory, I can book my trips back and forth with any private ambulance company I like, and it’s would be covered by my insurance - but what seems to happen is the hospital receptionists sort it all out unless I intervene and ask if I can try my chances with a different death-trap merchant this time, please.

So the nurse just came in to plug in an anti-vomit baggy into my drip. This is to help stop the purple liquid, which will arrive in half an hour, from making me throw up. (Apparently I am going to wee purple, too - a detail forgotten from the first time round!) An hour after that, I’ll get another chemical (colourless, I believe, but it’s always the quiet ones) which will drain in for a further two hours - and that’s that, for the scary direct-into-the-blood part. This evening, and for the next fourteen days, I’ll take tablets by mouth which constitute the rest of the chemotherapy course. It was really helpful to have it all explained to me like that (two or three repetitions necessary, of course, mainly because I kept mixing up my 24-hour clock times) - I feel very lucky to have no qualms about the medical side of things here. I’m sure it’s not always the same everywhere.

Signing off to go and read about cat detectives and flame-powered musical instruments and trying not to think about purple. A plus tard, mes amis…

Another trip to the hospital computer, another rash of postings… maybe I should start getting those TCP/IP pigeons trained up.
(Written Monday 8th October)

So it’s Monday 8th October, and I’m back in the hospital after getting out last Thursday afternoon.

After having a full, long and uninterrupted weekend of internet access, I have produced a total of… zero blog posts. Only now I’m back here, in my hospital bed, am I scrabbling away again on my keyboard.

All I really have to report is that it was wonderful to be out of hospital, but it ain’t too bad to be back in again, especially knowing it should only be until the end of the week or so. I have a chest catheter thing to get implanted tomorrow morning, which will avoid the need to get my arm re-punctured every couple of days for the IV drip. Then I stay in here for a day or two more before I start the second chemo session, Wednesday or Thursday. Then, if all’s running smoothly, they let me back out after a couple of days, to complete this second course chez moi. At which point you’ll probably never hear from me again as I soak into a blissful fantasy that my life is completely back to normal, that yes, of course my parents are staying on my sitting room floor in Paris, as is usual, and are cooking me enormous salt-free meals consisting almost entirely of meat and egg, that my bed has always had a little electric control that makes the component parts jog disturbingly up and down from each other, and that I have always been constantly connected via an enormously long but skinny tube to a big vat of oxygen that squats in the bedroom.

My oxygen tank is called “Puritan Bennett”, which I think is incredibly steampunk and cool. It comes with a little portable version which can be recharged from the mothership with an enormously satisfying “tshHHHH!” noise and no small amounts of pouring white clouds of gas. We took the portable Puritan for a test walk literally up the road on Friday, which ended up being quite depressing as I discovered I’d spent so long in a hospital bed that my legs and bum didn’t remember how I normally do this walking thing. Luckily they’d got it together more by Saturday, so we took a longer trip around the low part of the Buttes-Chaumont park which cheered me up no end. So there be ups and there be downs, but once again there’s no point in sweating it, because it’s not the big stuff.

Found my hair is starting to come out this evening, which caused a wobble, despite aforementioned blog bravado about hats and already-impending baldness - but really, and I must insist on this one with myself, this also does not file under big stuff. In fact, I should take heart - the chemo is definitely taking an effect of some sort!

Other good things that happened this weekend: my cousin Alistair and family were at the Paris Disney Whatever-It’s-Called-These-Days this weekend, so they exploded by in the way that only a group of people including young children can do. “So what does happen if I step on this tube, mummy?” “He turns blue and explodes, Lara, so stop trying.” (This part is entirely untrue, and I am being incredibly unfair to two very well-behaved and very thoughtful little girls who made me some amazing get-well cards containing a beautiful ton of glitter and red plastic gems.)

Right - bed. A chest catheter waits for no man!

(Written Tue Oct 9)

Chest catheter went in fine this morning. Lovely to have an operation under a local anaesthetic. And from now on, no more slipping around in my arms every time liquid needs taking out or putting in! I even got a little guarantee leaflet with it, like I just bought a microwave. What the little blighter actually looks like is a bit of a mystery, as they really did put it under the skin - it is only a matter of time before I and my cyborg brethren enslave you all, y’know.

Benefit number #2,438 of getting back in touch with people: finding out Laura and Sverre have had their baby! She is called Solveig, and there is a video of her on the interwebs which I can’t wait to see.

Thank you to everyone who has visited me in hospital, and to those who have repeatedly tried but been frustrated by my unpredictable habit of skipping out then in again. And thank you, too, to bearers of gifts from afar. And a new kind of thank you to people who have given impossibly and immeasurably generous offers of help - you know who you are.

I am now going to watch a film until I fall asleep, pondering how the blog is degenerating into a mindless series of sub-twitter reports about my everyday routine. Don’t worry, folks - something action-packed will happen again soon! Maybe I’ll work out how to move the shower head up and down without changing the temperature to freezing-cold/boiling hot, or maybe I’ll find how to ask for the sort of pain pills that can be taken with a glass of water and seem just as effective, instead of needing to be left rot and degenerate under the tongue to work properly. Stay tuned!

(Written Wed Oct 11)

So it looks like I’m sticking to original therapy dates, and will in fact begin chemo session #2 on Friday. This means I’m here in hospital today and tomorrow with not a whole lot to do (now the funfair’s shut for winter and all). I guess I mean that usually I’m here to get scanned by enormous sweating machines, or to wait anxiously for results, shiver in wheelchairs in corridors, have tubes and boxes wired under my skin - good, solid, medical things. But now, I’m here for no other reason than it’s more practical than to demob me for two days. It does, however, mean I get to hold on to my current SuperRoom - surely the best any oncology department in Paris has to offer. I’m not sharing with anyone, I have en-suite toilet and shower, and the window looks into an internal courtyard so there’s no roadwork noise. I have stayed in way, way shittier hotels, though none that I can remember that have people who come in at midnight and take your blood.

The good part is that as the chemo hasn’t actually started yet, I’m feeling relatively full of energy and side-effect free, and so activities like reading books in chunks of more than three pages at a time and watching DVDs all the way through are becoming possible. I watched the whole of “Waking Life” for the first time last night, and although I think I did actually sleep through parts of it, it didn’t really matter very much. I very much enjoyed it, and am looking forward to seeing some of it again and some of it for the first time.

Between chemo course #1 and #2 seems to be an odd stage. Analysis of how effective the treatment has been can only start after the end of course #2 - so for the moment, I am drifting somewhat. Drifting very comfortably, mind you - with the various kidney problems routed around and my drug regime settled into an effective little morphine/codeine habit, life is actually feeling pretty good. And Emilie may even be making progress on the sickness-benefit bureaucracy front - it may (may, may) be possibly conceivabley envisagable that I could tentatively be entitled to some kind of state sick pay after my current job (which I’m not, being mainly in hospital and spaced, actually doing) finishes. Though I don’t want to get my hopes up too high, it’s something.

The feeling is getting stronger in me that I want to stay here, in Paris, and get back somehow to where me and Emilie were going before all this happened. Of course it’s still too early to tell how the Big Stuff is progressing, and will be too early to get even the first indicator of progress (or lack of) before the end of chemo session #2 - but the idea that me and Emilie can perhaps carry on our life here is becoming more and more seductive. A new danger to watch out, while drifting in the eye of the chemo storm - the maybe-false lights of a “normal” future. Still, hope is important, and if I can keep from latching myself to particular outcomes at particular times, I guess I can use it positively.

I have been progressively falling asleep as I’ve been writing this, and have no idea if it makes any kind of sense. Thank god for limited net access, and editing opportunities before posting… I am going to nap for several minutes before dinner, and then I think Emilie will arrive for visiting hours and I will fall into a full fly-trapping mouth-gaping train-snorer to reward her for her unwavering devotion. In certain ways, she is possibly the strongest person I’ve ever met, and it’s funny how I kind of knew this but didn’t really know how much so until just recently.

Doze time, now, as when I shut my eyes the keyboard is replaced by a set of Lego-pink cinema seat blocks which invite me to sit and watch the big, big empty black film screen…

(Written Monday 1st October)

I found out on Friday that I was to be released from hospital today (Monday). Freedom!

A little scary, though, to think of the attention-level drop; here in hospital, I get my blood pressure, oxygen levels and temperature taken dozens of times a day, as many urine and blood tests as a boy could ask for, plus painkiller-dispensing nurses on-call around the clock. The docs on my case are on the same corridor, can stick heads through doors for quick chats if necessary, and there’s always A&E downstairs in case of any crazy 2am panic emergencies. At home, I will be equipped with a thermometer (yes, mouth versions do exist in France), the hospital’s telephone number, and several sizes of plastic buckets.

Seems like my right kidney shared some of these concerns, as it threw a wobbly this morning, demanding an x-ray and ultrasound (two floors and three floors down respectively) as well as the standard urine and blood tests to confirm that yes, it is dilated and painful and probably being bullied around by some rogue ganglion somewhere, but no, it has not been infected again nor is not about to leap out of my body and run screaming around the room.

So the end result of this is, I’m still writing this from my hospital bed on Monday evening, but the docs know what the problem is with the kidney, what to do if it gets worse (I can have the same sort of tube that I’ve already got in my left kidney stuck in the right one too, to let it drain properly and leave that ganglion frustrated and snarling), and my pain medication dosages have been not-so-gently bumped up.

But tomorrow, Tuesday, I should be out of here and back home - unless some other random body part decides to get its say in first. I should probably make it clear am very, very happy about the prospect. Even if I’ll be back in again for a few days in less than two weeks - the ratio should be more like a few days in, a few weeks out, which will be wonderful.

So as of tomorrow, I should have internet access again, but I’ll also probably, like today and most of the weekend just passed, I’ll be sleeping. So I guess updates will remain as sporadic as ever - and also there’s only so much I can crib from “hey guys, I’m ill, that’s different!” before it starts wearing thin. But I will make a start on my email - thank you to everybody who’s written and who I haven’t replied to. I’ve been so touched - but ok, not going there again tonight. I need to sleep and not get the keyboard all soggy.

Night all.

(Written Fri 4th October - like, right now!)

Of course nothing ever goes quite how you expect - my right kidney continued to play silly buggers Tuesday, and ended up needing a new little tube stuck in Wednesday evening. But as soon as the docs were sure that nothing was falling out in a hurry, and that the tube seemed to have done the trick (massive reduction in pain, with the only extra side effect so far being bubbly red urine - works for me) they let me come home yesterday afternoon.

Soon I might have a go at trying to unpick the sense of unreality (and joy, and terror, and, well, you get the picture) at returning to my flat after a month in hospital - but it’s all still a little too close for the moment much, and I’m just really resting. And eating. I’m on a very low-salt diet, but my dad has been calling in all his culinary and scientific skills to create pies and soups and curries that contain microscopic quantities of salt yet have not even the hint of a taste of cardboard. I wept at last night’s cottage pie, and ate a portion that was perhaps half the size of my head.

New things I’ve found in my flat to explore in more detail:

• An enormous and beautiful bunch of flowers. Thank you, thank you, thank you. I will post a photo soon. They are magnificent.
• An electric bed with a really nice mattress where the head section goes up and down. Possibly the best toy ever, and almost as importantly, I slept really well last night for the first time since dinosaurs ruled the earth.
• An oxygen cylinder the size and shape of a dalek, with a huge long extension cable that lets me wander around anywhere in the flat - except the kitchen, where I’m not allowed anyway in case I blow myself up on something combustible. Plus a detachable, refillable version - so when I get my strength up, I can wander outside the flat and be a danger to smokers everywhere.

Right - to post, and sleep. And I can’t wait to start getting properly and individually in touch, with everyone, but for the moment, I’m going to keep on asking for patience as I take things slowly - it’s all still a little overwhelming. But thank you all for everything.

All my love and amazed appreciation.