Tuesday, 31 January 2012

Ticking away the moments that make up a dull day...

I've been off on the sick for two months now – yep, as of tomorrow it's a full sixth of a calendar since my skull was jemmied open and the lurking horror removed – and people keep asking me how I fill my days.

The answer is 'with very little'. But that seems to be working, which surprises no-one more than me.

Boredom, or the fear of it, is what had initially bothered me the most about having all this time on my hands. I find it all too easy to slip into that Sunday afternoon torpor Douglas Adams described as "the long, dark tea-time of the soul", where ennui and inertia combine into urrggh. I had a few months of unemployment nearly ten years ago which did me no good at all on that front – you start to get into pointless, time-consuming routines; you actually start to regard going to the shop or signing on as What You're Doing That Day – and I was a bit worried about being sucked back into that.

But back then I was completely healthy, just unoccupied, and frustrated because a complicated mortgage insurance policy was stopping me from doing casual work, and my attempts to get back into the meedja full-time seemed to be constantly met with accusations of being either over-qualified or out of touch because I'd spent so long working in that dead-end, flash-in-the-pan online thing. Seriously, people actually told me that. Not a good time, for me or the industry.

This is different. I am, in a sense, still healthy insofar as I have no side-effects from my actual condition, or the hole it has left behind. But there are effects from the treatment, and they take a kind of a toll.

If I fill my time with little jobs like this blog, reading, and messing about with domestic tech projects, I toddle along fine and keep well away from the sucking mire of daytime TV. But I'm also aware that my energy lasts for about two hours at a stint before I have to eat and sleep, and that if I make the mistake of standing about in the cold or doing something strenuous, I'm going to be a bit gubbed.

Most days, first thing, I feel perfectly capable of going in to work. It's just that while I can sit here on my couch and batter away at my laptop, then nod off for a bit, that sort of behaviour doesn't go well in an open-plan office. Anyway, I still have daily hospital appointments, with the attendant public transport crawl across the city because the DVLA won't let me drive while I've got a bit of brain missing, and that's tiring in itself.

So the days fill themselves up satisfyingly with a pattern of pottering, sleeping and going to hospital, to the extent that I've breezed past the half-way mark in my treatment, at least this phase of it, without much drag at all. Doesn't time fly when you're enjoying yourself?

It all seems to be going as expected, too, which is nice.

My platelet count is stable, I'm pleased to say, because that tends to drop on this chemo and I'm very keen on not doing any more bleeding than is absolutely necessary. People do seem to want quite a lot of my blood on a fairly regular basis just now, and it's nice to know I can still close up again without all that messy spurting.

I'm losing even more hair, though, which is rubbish. I mentioned in my last entry that the patch I had only just regrown post-surgery had decided it was giving up on its comeback tour of the side of my head, but the rest of my right side is now also succumbing to musical differences. Annoyingly, it seems to be the black ones which are bailing out first; the greys are hanging on in there with the grim determination of a busload of pensioners in heavy traffic – a little extra memento mori, like I needed another one.

I have just over two weeks of daily chemo and five-days-a-week head-zapping to get through, plus three more Tuesday blood-lettings including an itchy vaccine-trial jag lined up romantically for Valentine's Day, then I get a break from all things hospital-y until mid-March.

I'm told I can expect to be thoroughly knackered for a couple of weeks after the death-rays stop, and that it might not be immediately afterwards – apparently there's a cumulative effect of the radiation that can kick in straight away or some time later, which I'm trying not to think of in terms of cooking. But, all going well, I hope to be back at the typeface from early March. There will still be a need to pop in to feed the Beatson's in-house vampire and occasionally go on a week of adjuvant chemo (which I should be able to work through), and there will be scans. But life should be back to more-or-less normal.

Until then, this is all really quite bearable. I'm feeling generally pretty good.

If you enjoy this blog, please consider donating some money to The Beatson, Glasgow's cutting-edge non-surgical cancer treatment centre. I'd be delighted if every reader gave £1 – you can do this very easily by texting MKBY91 £1 to 70070 from any UK mobile network. If you'd like to give more you can change the amount or use the blue puff to the top left of www.puregns.co.uk which links to my JustGiving page. That also works for readers outside the UK.

Tuesday, 24 January 2012

Hair today...

Just when I thought it was safe to go back to the barber's – the asymmetrical haircut is back.

I spent most of December with a baldy bit behind by right ear thanks to the spot of light brain surgery I underwent on the first day of advent. It grew back quite quickly, but the rest of it insisted on racing ahead, leaving me looking weirdly unbalanced. Moreso than usual, I mean.

Problem was that having someone gouge a hole in the side of my head, however skilfully, had left me more than a tad sensitive about letting anyone anywhere near the wound. In nerve-twanging, get-off-or-I'll-kill-you-where-you-stand kind of a way. Suddenly everyone wanted to dispense Christmas hugs on that side and, frankly, it was giving me the screams.

So professional hairdressery was out of the question. Once the bald patch had grown back a bit I did shorten off the left side a little with some beard clippers I've owned since a best-forgotten goatee project, but it left the top piled oddly high and fluffy and creepily reminiscent of an even better-forgotten Eighties adventure in coiffurey. Still, it was cold, I could wear a hat. Then I only looked like a stalker.

Anyway, a couple of weeks ago, I decided I was starting to frighten shop assistants and the wound was now touchable enough for me to seek professional help. I even decided to forgo my ten-minute, ten-quid usual and go to a proper hairdresser with clean floors and sharp scissors and stuff. My thinking was that in the comfort of a well-lit, tidy salon with trained trimmers I could explain that I was only six weeks past a head operation and was still undergoing radiotherapy, and that they would need to be very, very careful and ideally not touch my scar at all. The hairdresser listened very attentively, agreed that none of this would be a problem, then passed me off to a girl of about 12 who proceeded to scald my scalp and scrub it down with highly perfumed Swarfega before passing me back to her older colleague who spent the next half-hour prodding my wound with a variety of instruments I can only imagine were last popular among inquisitive clergymen in mediaeval Spain, before charging me £22 for much the same haircut I always have.

I felt really, really sick, and not just about the £22 (men seem to understand this, women don't seem to get why that's a problem) and went home to sip gingerly at a glass of water and try not to vomit. This was my last goodish day before the episode I described in the last blog entry which led to me being put back on steroids (still going great, thanks for asking) so that may not have been entirely to do with the haircut. But it was bloody horrible.

And now, just under a fortnight later, my patch of thatch is falling out again, in exactly the same place as was shaved before because that's where they're shining the daily death-rays. I'm told I might also go a bit thin on top, because they're also beaming some radiation in that way, just for luck (actually, it's because they direct in multiple, weak beams which converge on the naughty spot to deliver a combined payload there but cause less damage along their own individual paths rather than just one, powerful beam which would cauterise everything along its route: it's a good thing).

Still, at least I've been told it probably won't go all patchy, so with a bit of luck I won't have to shave my head entirely. I have no problem with the Kojak look, it's just that what with my operation scar and another one dating back to a bizarre drinking incident circa 1990 involving a hanging basket in a pub, it might just leave me looking like I've recently escaped from a vivisectionist.

And it might become symmetrical, again. The beams have to come out somewhere, and their point of egress of choice is the exact same space on the other side of my head, so I may end up with a shaved at both sides look, another back-to-the-Eighties do.

Apparently that's fashionable again. Who's willing to join me on the cutting edge?

If you enjoy this blog, please consider donating some money to The Beatson, Glasgow's cutting-edge non-surgical cancer treatment centre. I'd be delighted if every reader gave £1 – you can do this very easily by texting MKBY91 £1 to 70070 from any UK mobile network. If you'd like to give more you can change the amount or use the blue puff to the top left of this article, linked to my JustGiving page, which also works for readers outside the UK.

Tuesday, 17 January 2012

The joy of Dex

This has been a period of weird ups and downs.

I'm now into the second full week of my treatment, and I'm starting to feel it, with days where I feel completely washed out and quite sick. I knew to expect this – nausea is the main side-effect of Temozolomide, my particular flavour of chemo, and although it is controlled with anti-emetics I was moved to milder ones after day five, so I anticipated a certain queasiness –  but I hadn't anticipated such an impact. The nausea has been mild, but it ruins my concentration and leaves me oddly devoid of ideas. And that is buggering up my day, to be frank.

Last week, for instance, I started writing a blog entry about what is offensive these days; starting with my own propensity for cancer jokes, pulling in some recent remarks made by Frankie Boyle, making a brief visit to Chris Rock as portrayed in the American Office, and ending up on the Scottish Government's shiny new anti-sectarian legislation. I thought through my argument, did my research, sorted out my links and… couldn't bring it together. It just wasn't working. Sure, I could physically write the piece, but I realised as I was going that there was nothing compelling in it, nothing interesting, funny or hmmm-worthy. I knew what I wanted to say, but I couldn't make it gel on the page. And it was because I felt sick – although not terribly, I've frankly had worse hangovers – and it was throwing my mind all over the place.

This was quite disturbing. You have to realise that I can normally churn out 1000 publishable words in just over an hour, slightly more if they’re also to sing. And I've done it through colds, flu, food poisoning, and (you may remember) from my hospital bed six hours or so after brain surgery. So this was a bit like having a hand off but not noticing until you go to use it. Still, writer's block happens, I supposed, so I put the piece aside and went to bed.

The next day, I felt worse. The day after, fine. Saturday, I felt crap in the morning then perfectly OK in the evening. On Sunday I felt terrific. Then yesterday I felt absolutely bloody awful: fine in the morning, but sick and tired from lunchtime, and by the time I got back from my late-afternoon cranial zapping I was shattered – sick, headachey, and unable to regulate my own body temperature; sitting in a warm room in a heavy jersey, under a blanket, hugging a hot water bottle and with a heat-pack at my back, and still shivering. I assumed I'd caught flu, probably from hanging about in hospitals – why do they let all these sick people in? – and went to bed when I felt warm enough to move.

And then, this morning, I felt fine again. Not flu then. Not the chemo, either, as it turns out: I reported my symptoms during my weekly guinea pig session at The Beatson's clinical research unit, and apparently this is the accumulated effect of radiation therapy. My brain's swelling.

So I'm back on the steroids once more, my old chum Dexamethasone. I had it in the weeks around my surgery, you may remember, and it's great. Sorted out some bruised ribs, too, as a welcome side-effect to keeping my brain smaller than my skull.

A less welcome side-effect is that I have to watch the booze a bit, since the combination burns great holes in the stomach-lining; but since I feel immeasurably better, I really don't care. Anyway I get Losec for that, so that's the chronic acid indigestion I've had for the best part of 20 years and which no-one medical I have ever met has seemed inclined to treat or even investigate, sorted for the duration as an added plus.

I received the sacrament of one small white pill this afternoon with the benediction that it would make me feel better "almost instantly" and, while I wasn't actually feeling particularly unwell, I did. Still do.

Ah, Dex. Dexy, Dexy, Dex-Dex. Pal. Welcome back.

It seems pathetic to be happy about just feeling normal, but I suppose this is what addicts must feel when they have their first morning dose of whatever it is that for them staves off the shakes, sickness and spiders. It's just a huge sense of relief.

Dex is also addictive and has a spectacularly gory range of side-effects. So I can't be on it for long. But, for now, it's great.

If you enjoy this blog, please consider donating some money to The Beatson, Glasgow's cutting-edge non-surgical cancer treatment centre. I'd be delighted if every reader gave £1 – you can do this very easily by texting MKBY91 £1 to 70070 from any UK mobile network. If you'd like to give more you can change the amount or use the blue puff to the top left of this article, linked to to my JustGiving page, which also works for readers outside the UK.

Thursday, 5 January 2012

Day after day, they take some brain away...

Every day and in every way, I'm getting thicker and thicker…

Well, OK, not every way. But since the radiation therapy I started today may affect short-term memory and some higher cognitive function, I suppose it's otherwise true.

It's a trade-off. I take the radiation therapy, and it stops the glioblastoma from growing a new head, ideally for years. And since the un-radiated tumour would have the same effect, with a side-order of death, taking it is a no-brainer. Or at least a reduced brainer.

It shouldn't affect my understanding of anything. I don't expect to be any less quick on the uptake. But there could be some loss of short-term memory, and people with jobs which involve a lot of complex organisation (so not me, then) can experience difficulty they didn't previously. And it can affect short-term memory. Did I mention that?

If there is an effect, apparently those close to me are more likely to notice than I am. Which reminds me of the part in The Hitchhiker's Guide to the Galaxy where the mice want to buy Arthur's brain and provide him with a simple electronic replacement.

"Who'd notice the difference?" asks Zaphod.
"I would!" Arthur responds, indignantly.
"No you wouldn't, you'd be programmed not to."

Of course, it may not happen at all, or it may not happen for months or even years. But since I've consoled myself through life thus far that whatever else goes awry, at least I'm smarter than the average bear, even the possibility is not encouraging news. It's perhaps the one thing that worries me more than anything else in this whole business.

Still, on the bright side, I have been told that, while there is no specific method for this, I can try exercising my brain as the organ has a certain plasticity which allows it to re-route functions it needs around areas which no longer work. Kind of a use-it-or-lose-it scenario.

This had occurred to me already, and I have spent idle moments in the last few days trying to mentally count the Fibonacci series (each number is the sum of its two predecessors, so 0,1,1,2,3,5,8,13… and, yes, I do realise how geeky that is) but it seems that just doing the stuff I do anyway – reading rather than sitting watching the X Factor, for instance – will be sufficient. I think I'll start doing puzzles, too. Maybe even see if they've got these otherwise totally pointless brain trainer games in the Android market.

Ideally, of course, I would like to be counting the total on my JustGiving page, which I'm sure many of you will already be aware of thanks to the pretty blue puff to the left of this article and all the shameless spamming I did over the weekend.

It's to raise funds for the Beatson, where I am receiving all this wonderful if frightening treatment, and I'm delighted to say there was more than £100 donated on the first day.

New Year's Day wasn't so impressive, though, although the figure has crept up to just under £200 at time of writing, so if you haven't forked out yet, please do so.

All you need to do is click the puff, and you can make a donation on the JustGiving page by credit card or PayPal. If you're really lazy, you can even make your donation by mobile phone – just text MKBY91 plus the amount to 70070.

In fact, I think that would be the ideal – if everyone who comes to this blog donates just £1 by text each time they visit, the Beatson could get in excess of £100 per post from this blog ( I suspect this only works in the UK, though, so international readers will need to click the blue puff and use PayPal).

It would be nice if that happened. So if you like what you read, please show your appreciation by chipping in to an incredibly good cause. And keep me counting.