Friday, 30 December 2011

Have yourself a jaggy little Christmas...

Two wee boys meet up on Boxing Day.
"So, what did you get, then?"
"I got Monopoly, and a book token, and an orange."
"Oh, right. I got a bike, and an Xbox, and an iPad, and a TV, and a blue-ray player, and…"
"Gosh. Wish I had cancer."

It seems that all you need to do to become the centre of attention at Christmas is to contract a life-threatening medical condition. If I'd realised, I'd have done this years ago.

I'm not talking about the presents haul. That was good, but I'm a middle-aged man; there isn't much anyone can buy me. I can only use so many socks, I don't wear aftershave, and if you try to give me books or music, chances are it'll be wrong or I'll already have it. Although if anyone does come across a cure for glioblastoma in the sales, snap it up, I'll pay you back.

I mean instead a new sense of social attention: my drinking calendar filled fast this festive, everyone seems to want to take me to the pub. Which is very nice of them, although also slightly disturbing in that there is a sensation of a box being ticked, just in case I'm not about next Christmas. Still, since I fully plan to be, I hope to take full advantage of people's Yuletide largesse then, too. And in 2013. And 2014. And for as long as my brain and liver hold out, really.

But it has been good to get out, because I didn't really get any kind of festive feeling this year until the day itself was almost upon me, so I'm sort of catching up. Advent opened along with the hole in the side of my head, continued with four days in hospital, moved on to the grim news about the nature of my ailment, and closed with continual trips in and out of various hospitals. So the whole period just hasn't been very Christmassy.

Obviously, I was aware Christmas was coming. I could see that all the TV series I had been watching were coming to an end. I did my Christmas shopping, insofar as I logged onto Amazon and went "I want that one!" until my credit card melted. I even got the tree down off the roof (six years old and still alive, despite hurricanes, barbecues and neighbours using its pot as a base from which to launch their fireworks) and put lights round it. I just didn't feel festive, I wasn't getting that sense of impending occasion; possibly because people seemed to want to take so much of my blood for various and nefarious purposes - I'm convinced the Beatson is keeping a bonsai vampire out the back somewhere - and there's something really not that jolly about being punctured and drained on a regular basis.

Not that I particularly missed the build-up. I quite enjoy the festive period itself - the big family feed, the drinks with friends I don't see very often, the Doctor Who Christmas Special - but the approach is pretty horrible. I don't give a toss about the supposed true meaning of Advent (enforced migration, astrology and child genocide, apparently) but I find its commercial replacement equally distasteful: I can't understand how all those people can be allowed driving licences when they seem to find walking around a shopping centre so difficult; the music in shops and pubs (and hospital wards, incidentally) becomes more unpleasant than usual; people seem to expect me to care about the X Factor and to understand why I should (I did take a passing interest in the denouement of Strictly Come Dancing, but only while there was a faint hope of hearing the sweet sound of Jason Donovan's cruciate ligament popping).

Still, that's all over and we're into the nice comfortable slot between the holidays. Unfortunately, my social whirl is punctuated by the first round of the vaccine trial I'm taking part in, which means spending most of my daylight hours sitting about in hospital, and being quite knackered when I go out at night.

This first stage of the trial is an intensive three-day set of injections, after which it slows down to a less frequent event, just in time for the daily chemo and radiation fest to kick-off. So Wednesday began with the now-traditional blood-letting and then two intradermal injections, followed by four hours of sitting around waiting for me to not go into anaphylactic shock. Thursday and today have involved the same, although they seem to have enough blood for now, so that part hasn't been repeated. Although I daresay the nano-Nosferatu will be peckish again soon enough.

The injections are quite painful, although briefly so. A needle is shoved between the layers of skin in my thigh and some kind of immune-system booster is squirted in to stretch the layers apart and form an immensely itchy artificial blister, followed by the same process with the vaccine itself ten minutes later in exactly the same place. Subsequent days' injections also go into the same hole, so each visit is cumulatively more uncomfortable. They've obviously realised that with my recent extensive experience I'm getting used to feeling a prick, so they've come up with this new method to keep me on my toes.

Still, that's it all over until 2012. As I write this I'm sitting in the Clinical Trials Unit at the Beatson waiting to be told I can go home. I'll be back next week, though: first on Wednesday for a lengthy MRI at the Southern and a quick jaunt under the river back to the Beatson for what's known as pre-verification, which I think involves making sure the orfit mask still fits and some more x-rays; and then on Thursday again to kick off on the harsh chemicals and cosmic rays, plus another round of thigh-stabbing just for luck.

But until then I have a full social diary, a very nice Christmas bottle of Isle of Jura Superstition, and 50 Years of Private Eye to keep me occupied. And I'm going to a Hogmanay barbecue at a friend's house, so the horrors of celebrating Amateur Night in a public place will be spared me.

Happy New Year everyone.

Friday, 16 December 2011

God bless Christopher Hitchens

I lost a hero today. The inestimable Christopher Hitchens – journalist, essayist, bon viveur and professional awkward bugger – has died in a Texan hospital from pneumonia arising from the metastasised oesophageal cancer he was told would kill him in about a year (typically of Hitchens, some 18 months ago).

The reason I mention this here is because Hitchens wrote with massive wit, humour and grace about his cancer. I started this blog in an attempt to look at the disease with a certain amount of humour, and I would like to point to someone who did it a lot better: I recommend his Vanity Fair piece Topic of Cancer as an example.

I also admire the bravery and logic of the man, who kept writing pretty much to the end with incisiveness, scathing wit and humanity. Look at his last piece for Vanity Fair, Trial of the Will, dated in the odd way of magazines January 2012, to see his maintained contempt for platitude.

In this spirit, he seems to also have maintained his atheism – or, as he would have it, anti-theism – defying fear-driven hedging and the virus of faith. He despised religion, believing that it poisons everything (see his best-seller God Is Not Great - Kindle edition here), so I'm pleased by that, although I would have expected nothing less.

My cancer is less serious than Hitchens'. While my condition is incurable, it is controllable with a relatively kind treatment regime, and I am not labouring under any deadline. Hitchens' cancer had already metastasised into his lung and other organs when it was found; he was given a year to live, that time in exchange for the organ-wracking pain of heavy-duty chemo, scorching radiation, and a loss of ability. I would like to think I would also resist hedging my bets when faced with that, but I can't be certain I would. I think I would.

I'm sure there are elements out there currently celebrating the demise and even the damnation of the old unbeliever. Some reportedly welcomed his illness, including one Christian - a credit to his religion of peace - who apparently insisted that loving, fatherly old God had given Hitchens "throat" cancer because that was the body part he used for his blasphemy. Hitchens replied: "My so-far uncancerous throat is not at all the only organ with which I have blasphemed."

I would simply applaud the man's humanity and invite the well-meaning religious to join me in that. To the less well-meaning, well… they deserve all the life-wasting fear they are inflicting upon themselves; it's just a shame theirs is a delusion they insist on inflicting on others as well.

You didn't have to agree with Hitchens on everything to appreciate him. You didn't even have to agree with him on much. Even his best friend Martin Amis cheerfully said in The Quotable Hitchens, "hardly anyone agrees with him on Iraq". I certainly didn't, although at least his position was honest and consistent, unlike many. You just had to appreciate what he said and how he said it, and that was often a joy in itself.

And now to this morning. I've been watching the Hitchens coverage on the BBC with some irritation. Why is it necessary to describe the man as "alcoholic" with the same apparent weight as "intellectual" or "essayist"? Is it even relevant to the story?

Indeed, was it even true? While Hitchens himself in 2003 cheerfully admitted that his daily intake was "enough to kill or stun the average mule" he wrote in his 2010 memoir Hitch-22 (Kindle edition here) that while he still drank with some enthusiasm, he had in recent years begun to do so "relatively carefully", pointing to his prolific output as proof that he was no kind of piss artist. You can read that extract A Short Footnote on the Grape and the Grain on Slate.

Also, there seems to be an insistence on stressing that while Hitchens began his career as a radical in the 1960s, he had moved to the political right in recent years. Not true. Hitchens believed in opposing totalitarianism in all its forms, and as Woody Guthrie owned a guitar bearing the slogan "this machine kills fascists", Christopher Hitchens should have owned a pen engraved with the same. This gave him some strange allies at times: he was a post 11/9 hawk who found himself standing beside neo-cons on the subject of Iraq, but that hardly made him one of them. In fact, in his November 2010 BBC interview conducted by JeremyPaxman, Hitchens insisted that he remained a Marxist, agreeing that he still believed in the dialectic.

It's a pity that, when dealing with a man who saw so much value in precision, the BBC couldn't have made a better job of his obituary.

Lastly: why the headline, God bless Christopher Hitchens? Well, Hitchens wrote at length on the importance of irony. I felt that an atheist who hates cliché using a religious cliché to pay tribute to another atheist who hated cliché had a certain something in that direction. I hope the old bugger would have approved.

I'm now going to raise a glass of whisky. A futile, empty gesture, I realise - but I like whisky. I think he might have approved of that as well.

Thursday, 15 December 2011

Let's do some medical experiments for Christmas

Turns out the mask doesn't look a lot like me. True, he's a handsome devil, but there the resemblance ends. Of course, I'm not made of white plastic mesh, at least not extensively, which may have something to do with that.

It fits though. Boy, does it fit - as I found out as it was used to clamp me to a CT scanner table today: like a glove, if a face-glove is a thing. It is very tight, to the extent that my eyes felt like they were trying to escape backwards into my head, but given that it's designed to stop me moving during radiotherapy and thus hearing things like "aim, fire… shit, missed" from the people aiming the death-ray into my skull, that's good.

Today was a day of scans, one CT (clamped down, quick) and one MRI (claustrophobic and bangy, but weirdly and hypnotically relaxing), but that's OK, I'm going to have to get used to them. They're going to be a routine feature of life from now on, ideally equally routinely followed by the words, "nope, nothing there".

I've also signed up for a clinical trial. It's experimental and there is no way of knowing if it will help me in any way at all. But it's in addition to the gold standard treatment I'll be getting anyway and has no effect on that, and it can only work in the 40% of the population which, like me, has a particular genetic marker, so it would seem churlish not to. Plus, you never know.

The trial is for a vaccine, delivered along with an immune system stimulator, which might be useful in treating glioblastoma. It means quite a few more visits to the Beatson, but I'm planning on spending quite a lot of time up there anyway. It also seems to involve giving quite a lot of blood samples and a number of injections delivered intradermally, which seems to be a method of jabbing one with needles which has been thought through for maximum discomfort. But having various bits of ironmongery shoved into me (usually accompanied by a muttered, "I'm sure there was a vein there" or words to that effect) has become a bit of a fixture of late, so what the hell.

It is going to keep me busy over Christmas, though. I had rather been looking forward to the idea that, after today, I wasn't going to have to go near a hospital until early January. But with this I'm already booked up for much of next week and the week between the holidays. Still, I'm allowed to drink, so the seasonal social whirl will otherwise go as planned.

I'm also going to ask about a red nose or maybe antlers for the orfit. Might as well keep things festive.

Wednesday, 14 December 2011

Behind the mask...

I went to have my face moulded today. It was part of the cancer treatment rather than a sudden realisation on the part of society that the gently noble Smith brow should be cast in bronze. But still, I now have quite a natty little facemask sitting up at the Beatson.

Well, I say "little". I have a weirdly large head, to the extent that I have to ask for the special helmet at the go-carting and very short haircuts leave me looking like a Velcro football. It's going to look like a hippo's fencing mask. 

I'll know tomorrow, since I'm in for a scan and I gather they'll be using it then. It was whisked away today before I got the chance for a good look, so I'm sort of looking forward to that.

The orfit mask or shell is this winter's must-have facial accoutrement for the hip cancer combatant about town. If you have a lump this season and you haven't accessorised it with one of these, you're nobody.

Available in a fetching medical white, the orfit is a plastic mesh designed to clamp your head precisely in position during radiotherapy, within a two-to-five millimetre margin. Since radiotherapy involves firing tissue-frying x-rays into the living brain, this is A Good Thing: I'm keen that the only bits to be zapped are the genetically mangled; anything else I may have in my head I'm keen to keep there. Except maybe Bryan Adams' Everything I Do – they can burn that out if they like.

The fitting and making is reassuringly high-tech. The table is black and shiny and ruled with the ruby needles of laser-beams, which pleased my inner geek once I'd cleared the recurring phrase, "No, Mr Bond, I expect you to die". Once they have you on that and manoeuvred into position, a hard thermoplastic template is poached lightly in water until soft enough to be stretched over your face by two biggish blokes, who prod it and tweak it and bolt it down until it sets. The whole process takes about three minutes and entails no discomfort apart from mild heat and a brief sense of suffocation.

It also leaves your face feeling quite soft and exfoliated, although I expect it's quite an expensive way of getting rid of blackheads, even with a Groupon voucher.

For some reason, I also now have a dot of green ink on the tip of my nose. I'm not sure what that's for. I might ask tomorrow.

Monday, 12 December 2011

Breaking the news without bending it

So I've had to break the news all over again. And it has been a hell of a reporting job.

I realise that at the moment my profession sits somewhere between kitten-blinding and child vivisection in the popularity stakes, and that people currently doubt the integrity and even the skill in what at least some journalists do. But there are skills involved, and I have been very pleased to have them over the last few days.

The problem with a story like this is making sure it's right – not just accurate, but delivered in proper context, with what information I have which is useful and relevant presented well to give the clearest, truest picture I possibly can of my situation.

"Bit of a brain tumour. Getting it out. Should be fine" was frankly tricky enough. "Incurable but controllable cancer – but don't panic, there's a lot of context here…" is bloody difficult.

A long career spent breaking or at least denting the news has left me very aware that the consequences of getting this wrong could do a lot of damage to people I care a lot about: too much one way and I introduce unnecessary stress or even panic, too much the other and I'm insulting their intelligence by injecting a blind analgesic optimism which is no real help anyway. It is important to tell the truth, and to do it well.

It has made me wonder how people who don't have my background and who get handed lumps of raw, steaming information like this to pass on manage to do it at all without inflicting havoc. Maybe they just have to spew it out and watch it come right or go wrong with time. That seems deeply unsatisfactory, unkind and harmful. Because the fact is that despite my having an incurable form of cancer, and an aggressive one, there isn't really much room for panic, and quite a lot of room for real hope.

Trust me. I'm a reporter.

As on the occasion when I was first given the news that I might have a bit of a naughty lump hanging off my right temporal lobe, I was spared having to break this latest news, that my cancer isn't one which just clears up, to Clare because she was in with me at the time.

But this time, even as I was hearing the unwelcome tale for the first time myself, I was aware that Clare wasn't necessarily getting the same story.

We were handed a lot of information on Wednesday morning, but there were two pieces which stood out:

1. People with my condition have lived for just months or more than a decade.
2. The average life expectancy for my condition is around a year.

Just as I was thinking of the first that if a reporter had handed me copy with such a broad statement in it I would have chucked it back at them for clarification – not least to define "more than a decade" – Clare was murmuring, "even ten years isn't enough". And with the second, while I was thinking, "Who's in the spread? Lots of 75-year-olds? People with huge, deep-seated tumours?" she was hearing, "a year".

Because Clare is intellectually brilliant and a health researcher who understands stats, she twigged the story as it really is pretty quickly afterwards. Which is, incidentally, that while I know what it is that is likely to kill me, I don't know when, and it's probably years and years away. But I think that because like other normal people she doesn't automatically receive all her information through the reporter's filter that the person giving it might be a lying, dissembling git – even when they're actually nice, professional, well-meaning doctors with no interest in spinning anything at all – she found taking the data in more upsetting than I did.

All of which meant that I wasn't at all looking forward to the afternoon's next task, which was to go and tell my parents. This one, in particular, had to be reported well.

I wanted to get them together but not to phone first and have to come out with any information too early or out of context, so in the event we drove past the house and went and drank coffee in Clarkston until I was certain on a subsequent pass that they were both in.

I think I made a decent fist of it. I explained that we'd had the results, that what I had was incurable but controllable, and that I'd be starting an intensive course of chemo and radiation in January; once that was clear, I'd be on a programme of regular monitoring to catch any, admittedly likely, recurrences so that they could be zapped in turn. I didn't mention any timescales because, to be honest, I didn't know them and still don't – all I had was some inherently misleading information I hadn't yet had much time to put into context.

They coped well, because they do, just like the last time.

The next job was to tell my sister. That was a phonecall that evening, and I did mention the prognosis information to her because by that time I'd been able to put it into the proper context I have here, although I also mentioned that I hadn't given that information directly to my parents. I meant because, as I have explained, that I didn't see it as helpful at that time, but she may have taken it that I was shielding them from information, which wasn't strictly what I was trying to do. But she coped well, to a soundtrack of yelling kids, because she does. Just like the last time.

Then it was a quick email to some of my friends, again with the prognosis in context, and finally the blog update Results now in… Facebooked and Twittered on Friday, to let the power of the world-wide information social highwebs do the rest of the work.

So that was it. Story told.

Except not…

On Friday night, my sister emailed to mention that my mum had been asking about this blog, and was keen to read it. She'd dissuaded her, saying there were references about "tubes going into places and suchlike" to which my mum had replied that she was quite familiar with that sort of thing, but had dropped the subject. But my sister was suggesting that if I was keeping anything back, I should be circumspect about who had access to what I was posting here and to Facebook and elsewhere, because my parents were getting phonecalls from well-wishers who would see things on forums they wouldn't.

I should say that I don't mind my mum reading this blog: it's intentionally public, and while much of it is in poor taste and contains a small amount of slightly fruity phraseology I wouldn't use in front of her, there's nothing here I wouldn't say openly in one way or another to pretty much anyone. And I think it is clear: while face-to-face I may occasionally appear to be wandering the foothills of Mount Asperger's or one of her sister peaks, I do think I get myself across well in print.

But the problem of filtration had raised its head. I didn't want people Googling glioblastoma and calling my mum and dad with some kind of well-meaning horror story, or even taking information from here out of context and just not bloody reporting it properly. So on Saturday I had to pop up to my parents' to carefully make it clear that I'd had the two pieces of information I mentioned above, but that they had to be taken in a certain way.

It helped quite a lot that by that time Clare had been into the Maggie's Centre and I'd been to see my GP, both of whom had independently backed up my own conclusions on the issue: that I am not typical in this, and that I am not going anywhere anytime soon. Outside of exceptional bad luck, I've got years, me. Decades, even.

So then the story was told.

I've probably gone on long enough, but there is one thing more I want to stress here. I am talking about good reporting, about data management which allows sensible, true information to be presented in a useful, beneficial way without obfuscation or delusion. I am not talking about spin, which is about using the same powers for evil.

Nor am I talking about the kind of alleged reporting which takes some figures (ideally from 'studies'), adds some opinion (ideally 'expert') and mixes illiberally to come up with whatever pile of old cock you happen to be looking for, even if it contradicts the similar pile you concocted yesterday. I could link to examples of how this has been used to prove how both men and women are more likely than each other to get cancer, or indeed how being left-handed, black, or wearing flip-flops all increase your chances of getting a scary lump, but I'm not going to because it's wearing and stupid and I don't feel like giving those who do this stuff even the tiny amounts of traffic I can bestow.

Instead, I'd much rather refer everyone to Ben Goldacre's magnificently insightful and funny book Bad Science (Kindle edition here), his eight years of Guardian columns on the subject, and his website

And leave it, optimistically, at that.

Thursday, 8 December 2011

Results now in...

When the doctors told Roy Castle he had 12 months to live, he said he'd do it in six because he was a lump-pumpin', cell-poppin', metastasisin' Record Breaker - yeah!

Ok, that's alienated any readers who didn't grow up watching UK children's TV in the 70s and 80s, not to mention those with taste and discretion.

But it looks like I've got a bit of record breaking to do myself, as it turns out.

The lumpy bit they took out of my head last week is called a glioblastoma. Better out than in, rather like Simon Cowell and a life-raft (thanks to Jo Brand on QI for that one), but not a good thing to have had in my skull in the first place.

A glioblastoma is a type of brain tumour, and it's not a nice one. While the object itself is gone -  excised, dissected and centrifuged, or whatever it is they do to determine what a blob of ronin cells actually comprises -  the mismatched wiring along my double-helix that triggered it remains, and is quite likely to try to grow a new one.

This is not curable. But it is controllable with chemo and radiation, both of which I will shortly be receiving in abundance. I'll know a bit more about that when I go in for my first appointment at Glasgow's reputedly excellent Beatson Institute on Monday, but it looks like it'll involve a five-day-a-week regime of both for six weeks, beginning in the New Year. The treatment seems relatively kind, with the main side-effect of the orally-administered chemo being mere nausea, controllable by another drug, and the side-effects of the radiotherapy just temporary tiredness and a patch of baldness where the gamma-rays go in – and, let's face it, I'm getting to that age anyway.

Prognosis is wide and varied. An average life expectancy for this kind of tumour is about a year, but people have lived for ten years or more. And averages are meaningless here, since they must include the elderly, the infirm, people with bigger, nastier and inoperable tumours or ones in places inaccessible to radiation. I am, it seems, on a good base-line: I am young, strong, apparently very good at recovering quickly from major surgery; my tumour was easily accessible and is out, so any treatment is to prevent or control return, rather than to try to deal with something that remains lurking; I feel healthy and well, and I will remain positive because depression is debilitating, so I'm not going to do that.

So while I know what it is that is likely to kill me, I don't know when. And since the timings involved and the relevance of the data on which they are based all seem so imprecise, I'm taking the ten years as an absolute bare minimum and, in fact, plan to do a great deal better than that.

This is not faith or mindless optimism, but a rational interpretation of the facts and information I have available. This type of tumour does not spread, not even to other parts of the brain, but should simply try to regrow where it was. With the gold-star treatment I am down to receive, which is as good as any available on any system anywhere in the world, followed by constant monitoring and a regime of discover-and-zap as appropriate, combined with my own natural resilience, I see no particular reason not to save my final breath for cursing the driver who eventually knocks me down as I stagger out of the pub somewhere around my 87th birthday. Ideally, later.

Break a few records, in fact.

Monday, 5 December 2011

Home again, home again...

Well, I'm home.

I've had my head drilled into and had a bit of brain scooped out; I've been sleep-deprived and dosed with morphine and steroids; I've been crushingly bored and weirdly elated.

I've also had some excellent, highly-skilled medical care, paid for automatically by the insurance policy into which I've been contributing by taxation for the last 25 years or so, and I've seen some people around me who are in much, much worse positions than me who are receiving exactly the same excellence for no other reason than that they need it.

Please bear this in mind when anyone suggests any nonsense about harsh, unfortunate but oh-so-terribly, hard-but-necessary, under-the-current-conditions decisions to be made in connection with dismantling or undermining any of this, and then enquire nicely if the person suggesting it is adequately insured on a private basis to cover the stitches they're about to require themselves.

Because thanks to all that I'm back sitting on my comfy couch with little more than an itchy scalp, an unbalanced haircut and a slightly exotic scar. And it feels great.

There's still a way to go. I'm on a self-reducing course of steroids, I'll be on anti-epileptics for the foreseeable, and on Wednesday I need to pop myself back in to have my staples popped out, and to see an oncologist about the scarier process of where the treatment goes from here. And that could mean a lot of pain and exhaustion, depending on what they decide. But I'm through this bit, and I think that's probably the worst.

I'll be winding this blog down a bit from here on in. I've posted every day for the last ten days, and I think that was fine while I had stuff to say and poor-taste jokes to crack, and I hope it's given people a grin or maybe even helped someone somewhere; but there comes a point where it all gets a bit self-indulgent, so I'm going to rein it in from now and update only when I have something to report.

If you'd like to know when that is, you can follow the blog by using the feature off to the right, pick it up as an RSS feed, or just follow me on Twitter.

Thanks for reading, and I'll keep you posted.

Sunday, 4 December 2011

My will be done?

Most of us, I suppose, spend the first part of our lives being immortal. We feel ultimately unthreatened, invulnerable. We do things we know are stupid anyway because we also know we can't really be touched.

There's a great fake pic out there of an iPhone app called the Roof-Jump Danger Analyzer. The idea is that you get in position, point your camera at the ground, the app analyses the distance and likely health damage, and tells you to do it anyway.

Approximate height: 15 feet.
Damage estimate: Broken ankles likely.
Conclusion: Do it man, it'll be awesome.

And it's an approach that works for most of us for a while.

Then a few years pass, and perhaps we see a few casualties, or the knowledge we've always had that we're not really immortal starts to take on a little more significance, and we ease off a bit. We stop smoking, cut back on the alcohol, maybe take a bit of exercise now and again. Or we at least convince ourselves that we're doing these things, because although our sense of mortality is now just a little more solid, it's still also quite theoretical.

I'm thinking of bringing out my own app for that stage, the Middle-Age Risk Assuager…

Intent: Evening in front of telly, bottle of Rioja, two half Coronas.
Damage Estimate: Well… a bit, maybe.
Conclusion: You're a stone lighter than last year, you haven't bought a packet of fags since 1998 and you can walk home from work on Monday. You'll be fine.

I think it might sell.

Eventually, though, comes the mortality shock. Maybe not for everyone, maybe some people can remain in Middle-Aged Risk Assuagement for the rest of their puff. But I suspect that for most of us the full acceptance and understanding of inevitable mortality must either creep into fruition as the incidental carnage around us mounts, or hit us sharply in a single event.

For me, it was the latter. Not back in October, when I briefly revived Tiswas's Dying Fly on the office floor, nor even last month when I was told I probably had a brain tumour. There were still 'probably's in there, that was still theoretical. No, the big moment was at around 3am last Wednesday, when I realised I hadn't made a will.

It was a cold electricity which stabbed me awake in the middle of the night and left me lying there, sweating. The flat is mine. Clare and I aren't married. I could conceivably die on the table, and I'll have left her no guarantees of anything at all.

Not that she needs anything from me. And, as I have stressed repeatedly here, I didn't think I was going to die; these operations are as straightforward as brain surgery can be, they do them every day, and they did, and I didn't. But in that cold hour the idea of mortality suddenly wafted out of the realm of the theoretical into the real as a huge, ragged loose end that I'd left just flapping.

So on Wednesday morning, once Clare had gone to work, I wrote a will. I am no lawyer, I have no idea if what I wrote down was in any way legally binding. It certainly wasn't witnessed. It was simply a letter of expressed intent, appointing my father as my executor or administrator and instructing him to make sure that Clare got everything barring a few sentimental family items, as if we were legally married. I then added a quick proviso that, should there be a circumstance under which not being married might be some kind of legal advantage, then I would want her to have her cake and eat it. Then I signed it.

Then I realised that my world is a digital one full of passwords and cloud-stored information and online-only banking, and had to write a second, much more complex, document explaining how to get at all that stuff, with details of what bits of junk I've picked up over the years might actually be worth something down to what to do if the wi-fi router went down. Then I realised that I had written a data thief's wet dream, so I printed that one out and destroyed the electronic originals, folded the hard copy inside the will, and sealed it in an envelope. Then I realised this wasn't perhaps the most calming parting present to hand to my beloved as I popped in for a quick cerebral scrape, so I put a quick message on it explaining that it was just some stuff she'd need if something went a bit wrong, and then hand-wrote something a bit more personal to wrap round that, on the assumption that it was all going to go right, and then had to seal all that in an unromantic Manila envelope because it was the only thing short of a Waitrose bag that was bloody big enough to take it. She likes Waitrose, but it didn't seem appropriate.

Then I went to the pub and had some lunch and a pint, and felt a lot better.

The thing is, why would I have made a will? For most of my adult life I have been a self-contained unit, needing little from others and with others needing little from me. It was something I'd filed vaguely on the One Day pile, but no more. Until October's sideways hopscotch on the office carpet tiles, I was never even ill: to the extent that when I last went to see my GP, about five years ago with a bit of a back twinge, it turned out she'd retired, the junior partner was now the senior partner in the practice, and they weren't entirely sure who I was because my records were still on paper in a shoebox somewhere in the basement because I hadn't been in for some 15 years and they didn't think I was coming back.

Why would I make a will?

Well, to avoid feeling that howling wind of omission again, for one thing. I need to know that Clare will simply get my stuff, no buts, not because she needs it, but because it's mine and I've worked hard for it or at least chanced my way into it, and I want her to have it or control where it goes when I don't need it any more. And I want this to happen without having to be joined in an institution of which we don't approve (mostly Clare) before a god in which we don't believe (mostly me) just to make it so.

I suppose I should go and see a lawyer. That'll be nice: there's a certain appeal to be had in meeting people whose profession is nearly as roundly loathed as one's own on a scale from traffic warden to cannibal.

Must get that on the To Do list.

Saturday, 3 December 2011

So... how was the morphine?

That's 48 hours out of the way since the lumpotomy, which apparently takes me out of the period in which the remains of my brain were most likely to slide out of the new hole. So the bandage is off, the dressing has been changed, and I'm generally feeling much less restricted about the bonce.

And I no longer have to tie my glasses onto my face, which is nice.

I'm also still getting the kind messages - thanks for them - including the one question which seems to crop up most: "So… how was the morphine?"

I suppose this is only natural. I'm from a Scottish social segment which prefers to take its kicks from booze and Presbyterian smugness; it simply doesn't get itself smacked to the gums on a regular basis, but does see quite a lot of it about and then, when it sees one of its own getting medical licence to do the same, is a little curious…

Well, sorry folks, but I can't really recommend it as a recreational experience. Remember the paeans, exaltations and eulogies to the stuff in Trainspotting? Apologies, but the Leith nederati must have been getting much better shit than me, because while morphine was undoubtedly an excellent analgesic, it hardly flung open the doors of perception.

Clare was in to see me within an hour or two of my awakening, and reckons I was lucid, or at least as I ever get. I remember being perfectly clear, although also very comfortable, and my blog for Thursday doesn't read like the diary of a drug fiend. So I suppose it was doing its job and nothing else.

Except for one thing. I dozed quite a lot on Thursday, and while I was asleep I was very aware of my brain being in an uneven dual state, with a much larger, intact left side containing 100% of me, and a small, damaged, right part containing a wound and, for some reason, Facebook. This wasn't a one-off dream, but more the apparently natural basis for all the short, ten or 15-minute snoozes I took through that day. Until actual bedtime, obviously, when sleeping ceased to be much of an option… but I went through all that in yesterday's blog.

I think it's fair to say that the sleep deprivation of Thursday night was more of a mind-altering factor than the Class A drugs of Thursday lunchtime. Yesterday's blog, as I'm sure you've guessed, wasn't written at a single sitting but in stages as time wore on, and I deliberately didn't go back to change much – partly because touchscreen tablets provide a horrible editing environment, but mainly because I wanted to leave it as a record of my mood changing throughout the day. It didn't work that cohesively, but hey-ho. You try these things.

Today has been quite different. I was moved to a new room last night, one with a collective commitment to kip, and slept soundly and comfortably, with the occasional unironic rousings to check for natural slumber no more than a minor disturbance. As a result, I've felt great today. Sore head, obviously, but not that bad. My steroids have been cut back again, and apparently my wound is fine. It all seems pretty good.

I'm told I'll be out on Monday, and that seems about right from how I feel myself. I wouldn't be entirely happy to be away from professional care just yet, but in another 36 hours, I reckon I'll be ready to go.

So the door in my head was opened on December 1, but only in a physical sense, and the choccy was crap. I'm not out of the fire yet, but all the messy potential for internal bleeding, necrotising bone-flaps and creeping abscesses seems to have been kept at bay by slick, professional care and plentiful tax-funded medicines, and I'm feeling great. I'm not going to say high on life, because then someone would have to come round and strike me sharply and repeatedly around the head, and that wouldn't be good for the wound.

And, besides, I still don't know if I'll need chemo and all that entails.

But the buzz is back, and it's real.

Friday, 2 December 2011

And so the waiting begins...

God, I'm bored.

They say the waiting is the worst part, although they never say of what. So I'm filling in and deciding that at the moment it's the worst part of looking at a weekend stretching ahead into a singularity of monotony as I hang around waiting to be demobbed, probably on Monday, with all of the rest of today, all of Saturday and all of Sunday to go.

God, I'm bored. I'm not a patient patient.

No-one mentioned that when they whipped the tumour out, they'd also be putting some tedium in.

Still, I'm not in much pain. Yesterday's early afternoon opiate largesse declined sharply to paracetamol by teatime and has stayed resolutely there since, but I don't honestly think I need anything stronger. Just something to keep me occupied.

And there have been some distractions. The sight of the old boy opposite climbing back into bed via the cotbar side while only vaguely wearing a hospital gown was a horribly regular and regularly horrible break from routine for most of yesterday evening. And his later ongoing escape attempts made sure there wasn't much of that dull sleeping nonsense going on last night.

The 3am catheter removal helped with that as well.

The nurses need know we're sleeping naturally, and wake us up to do that. I'm getting used to just slipping into that warm embrace only to be roused to be asked if I know where I am and who the Prime Minister is (so far I've used his Sunday name, but as long as I remember it begins with 'C' I'm pretty sure I'll be close enough) but waking me to hoick out my tubing did seem at the time a little above and beyond the call. Not to mention deeply, deeply unnatural and wrong. There is a story there, but it's not for here. Maybe for the pub - it's going to need alcohol.

Weirdly, once the full bustle of the morning ward kicked in at about 6.30am, I found it much easier to sleep. Possibly because I'd stopped shuddering and thinking about the catheter. Not to mention the Prime Minister.

So I got the few hours I needed, but then it was wakey-wakey time again with nothing to do. There are only so many times you can read a paper - I even considered going for the sports section, but I remembered I have standards - and even the blessed, unspeakable pleasure of being returned your own bladder wears a bit thin after a while.

Anyway, the day has now passed with a lot of pointless internet browsing, a wee walk up the stairs with a couple of nice-but-tiny physiotherapists who'd have had no chance of catching me even between them had I suddenly dropped, a visit from my parents and another from Clare.

I've moved rooms, now, to one apparently without escape artists, so I should get some sleep tonight. And it's quiet at the moment as everyone's off to watch the Da Vinci Code on the telly and I'm sitting here writing this and listening to a bloke having his own catheter fitted.

See? Standards.

Thursday, 1 December 2011

Alive and kicking

Well, that could've been a lot worse.

I've got a hole in my head, I'm wearing a fetching pair of Moll Flanders toeless stockings, and I have a drain up my knob. But I feel pretty good, all things considered.

Obviously, I've had quite a lot of morphine today, which might have something to do with that. And which might also, incidentally, mean I'm writing utter nonsense, or at least moreso than usual. But I've just been told I can charge ahead and just use my phone, which means wi-fi for the Android tablet, which means an update here. Hot off the hospital bed.

I'm guessing c. diff is one infection you can't spread over the internet.

The early start and lack of caffeine aside, today has gone about as well as can be expected. I was first on the list since there didn't seem to be any immediate-priority Wednesday night casual hammerings to compete with, so I was in surgery by 9am, pausing only to be knocked unconscious on the way. By lunchtime I was waking up gently with a less painful head than on the average Sunday morning in my twenties, but with a nice man offering me morphine anyway.

Later on, my heroic neurosurgeon popped past to mention that she'd found something which was probably a tumour, whipped out all that she could see of it, and got the lid back on without incident. Apparently also without later finding any bits she'd left out, which is what tends to happen when I dismantle stuff.

So I'm fine: cheerful, wired in both the techie and chemical senses, and well fed and coffeed thanks to Clare's thoughtful ministrations. And, I'm hoping, completely de-lumped; although we won't really know that for a while.

Thanks to everyone who has sent messages of support, and to those who also sent prayers, the option to send money instead is still open.