Thursday 4 July 2013
Saturday 13 April 2013
I'm keeping out of supermarkets. Two quid for a bag for life? If I'm going to spend that kind of money on a plastic carrier, I expect it to last past the autumn.
I've just been cheated enough. Of about 40 or 50 years. And I want it back.
I went to see the nice oncologists at
Glasgow's Beatson cancer centre on Tuesday,
hoping for my next bumper bag of harsh chemicals to keep the evil twisted part
of my DNA which keeps trying to eat my brain in check. Instead I found out that
the chemo hasn't been working. Despite a successful second operation in
January, the poison pills have failed to stop whatever was left from growing
another head and I have a recurrence roughly the size of a Brazil nut.
It seems I may only have three to four months to live.
I would turn 45 this year. Given my generation, my social background and the relative longevity of my family, I was expecting to see my 90s.
I had plans: I wanted to be a published author; I wanted to be a dad; I wanted to grow old with Clare; I wanted us both to travel more extensively than we have. I'd even have quite liked to have finished learning to play the guitar properly. Circumstance is such a swindler.
I had plans: I wanted to be a published author; I wanted to be a dad; I wanted to grow old with Clare; I wanted us both to travel more extensively than we have. I'd even have quite liked to have finished learning to play the guitar properly. Circumstance is such a swindler.
It isn't fair. But of course it's not – fairness and justice are human
constructs, they don't exist in nature. I can ask the ridiculous question "why me?", but I already know the answer is "why not?"
Not that I believe there's anything to ask the question of, other than the logic and intellect we have evolved. And my lack of faith is a comfort. I'm not afraid of death. It's merely oblivion. There was a time before I was here, and I didn't suffer then. The religious have the foolish idea of vengeful gods and devils to terrify them through such dark times. I may have to eventually succumb to this terrible disease, but I will not succumb to the virus of faith.
I have some time left, and I will make the most of it. Of course I'm afraid of dying, but of the process, not the aftermath. Cancer death can be so cruel and undignified. At least with glioblastoma it seems that there is no pain, no suffocation on pneumonia, no dwindling out of personality into dementia. Eventually the tumour fatigue takes hold and you simply sleep it away. But until then, I fully intend to enjoy myself as much as I can. I will remain me until the end, and I will not waste that time on self-pity and fear. And I will fight with every resource at my disposal. I have a strong mind, and I'm not planning on going anywhere gently.
I have one more chemo option left to me. The prognosis of 12 to 16 weeks is without treatment other than the steroids which keep the effects of swelling under control and keep me feeling relatively well, but I also have the opportunity to spend a night plugged into a drip at the Beatson every three weeks for the foreseeable. That's pretty frequent given the timescales we're talking about and will leave me a bit gubbed for a couple of days each time. But in exchange for that, I get about a 10% chance of doubling the existing estimate.
There's a quality of life judgement to be made there, balancing a little short-term time I can be making the most of against not-very-good odds of slightly longer-term time during which I might not feel exactly lovely, but of which I can also try to make the most. But I'm a fighter.
So I'm fighting for as much good time as I can get.
As part of that, Clare and I are currently enjoying a weekend break in the Lakes, something we like to do around this time of year. It's lovely here, and they have nice food and beer.
So, making the most of it. I just wish I wasn't also carrying about this poison sac of bereavement and anger in my lower gut. It's heavy and hurts, and gets in the way of my Good Time. Still, I just need to fight that, too.
I'll work out how I do that as soon as I can.
Wednesday 27 February 2013
Well, I've been off the chemocoaster for over a week now, and I'm starting to return to something approaching normal.
I can't say it has been one of my better fortnights, though. When I last left you I was beginning the 10-day cycle, and it seemed to be going not too badly. The dietary restrictions – quite a lot of the fun stuff, including alcohol, particularly red wine – weren't proving too much of a problem as long as I was careful. I didn't have much appetite anyway, and the anti-emetics seemed to keep the expected nausea under control. But there was little I could do about the exhaustion – this particular type of daily poisoning, Procarbazine, seems to be particularly draining. By the time the cycle finished on February 15, there had been whole days in which I'd been capable of little but sleeping – although I'd had some good days, too, including one in which my mate Dave ran me up to Balmaha for a nice plain cheese-and-alcohol-free pub lunch and I had a burst of unexpected energy.
I've been trying to replicate that over the last week, slowly recovering my energy and taking the odd trip out, and I'm getting there. Even went out to a concert last Thursday, and I was out for dinner on Saturday. So it's coming together,
The next cycle is in mid-March, and I'm hoping it will go more easily, not least because I'll be back at work by that time, and I don't really want to take any more time off. I'm sick of sitting about – I've had more rolling news than even I can take – I'm completely bored with the Pope, Oscar Pistorius, the Huhnes, and horsemeat. There must be something else happening in the world, a spot of light middle-eastern shelling for instance. I need to get to work.
Which I do on Monday, by which time my eyesight – which had been deteriorating because of the effects of the steroids on my eye muscles – should be up to some long-term screen use. I'm now on a self-reducing dose on the steroids, and it seems to be having a positive effect. I can focus much better, and reading is a lot easier.
In the meantime, I've got nearly a week to pull myself together. With my eyesight and the tiredness under control, it should all be pretty positive.
Which is the point. It's OK to be tired. It's OK not do stuff because I can't see properly. These are just symptoms, like the itchy swelling I still have around my wound which, combined with the baldy patch last year's regular cranial zappings left me, gives me a haircut I like to think of as the Half Black Adder.
Symptoms are there to be endured (ideally, worked around) until they go away, and they will. In the meantime, I'll just get on with things. Even if people are looking at the side of my head like I've just been let out for the day.
It's the best thing to do – life's too short for whining.
Friday 8 February 2013
There are better ways to keep yourself occupied than being sick and tired. But it's something to do.
I started my new chemo regime this week and, to be honest, it's not too bad. Now the surgery is out of the way and I'm a lot better after it, it was obviously time for me to have something else to keep me feeling a bit crap. And so I'm back for a wee whirl on the Chemocoaster here in the
Tumourland Fun Park
I've been on worse rides. As with last year's Temozolomide regime, I get to take my chemo at home in capsule format, which seems so much less unpleasant than for those with other cancers who need to go to hospital to sit for hours with a venom sac attached to a vein as its contents drain a trail of burning destruction into their circulation. True, I don't feel exactly lovely, and there is a bit of a balancing act to be done to keep the contents of my stomach on the inside, but this is so much kinder.
The particular flavours of chemo I'm getting this time make up a combination treatment under which two separate harsh chemicals gang up to give whatever remains of the tumoury stuff a tanking, and stop it growing back. I assume one of them holds its arms. Since my blood tests were all OK, I kicked off on Tuesday as planned with an evening pile of capsules containing a drug called Lomustine which is taken as a one-off at the start of the cycle. That went without incident, and I got a perfectly good night's sleep, so Wednesday took me into phase two, fun with Procarbazine. This one I need to take daily for ten days and that, frankly, is a bugger, since it seems to be unable to play nicely with any of my favourite foods, not to mention a few others I don't even normally eat, just for good measure. So, no alcohol, particularly red wine, no cheese, no patés, no meats prepared with cures, smoking or marinades, no yeast extracts (which rules out a lot of gravies and sauces, apparently), no bananas or avocados, and quite a few other things TBC apparently – the list seems to vary from source to source.
I found one on Wednesday, I think, when reckoning that a wee ham omelette would be a carefully light lunch, I found that the apparently uncured and guaranteed allegen-free ham definitely had something else in it. Cue 12 hours of stomach pain. I felt much better at 2am on Thursday when I was eventually violently sick. At least that was some 18 hours after my last round of chemo, so I didn't lose any of that, which is the main concern with all this.
Thursday and today, however, went pretty well. Each day began with a cheeky wee early-morning anti-emetic, a half-hour wait for that to kick in, a handful of Procarbazine capsules, a wait for an hour or so to make sure that had all settled, then my usual Losec and Keppra and dex regime. Then a wee treat in the shape of some toast. It's been a gastronomic journey.
My stomach feels more than a little sensitive, but it's not too bad. And I had a pretty good dinner tonight – woo for lamb chops! With luck things are normalising, as long as I'm careful. I hope so, I've got a week of this still to go.
Still, it's only for ten days every six weeks and, as with the Temozolomide, once I'm used to it I should be able to go to work through the cycles.
What's more, tomorrow I get to try a different anti-emetic. There is no end to this adventure.
Friday 1 February 2013
Well, not me, I thought as I parted with the best part of £160 this morning to watch a pair of septuagenarians rattle through a 40-year-old album. Whatever The Who may have sung back in the 60s; given my current condition, the sentiment "Hope I die before I get old" isn't one I'm massively keen on these days.
Anyway, My Generation isn't on Quadrophenia, the album/rock opera the surviving half of the one-time loudest band in the world are touring when they come round in June. And as far as I'm concerned, they can skip it from the hits selection they're planning for the end. Unless they're planning on changing the words to "Look, I got old and haven't died!".
Lumpy brain notwithstanding, I'm planning on lasting at least as long as Townshend and Daltrey have, and ideally a great deal longer.
The last thing I'm going to do is die.
Although if I'd had access to anyone in authority at TicketSoup, the SECC's ticketing service, during the booking process for this show, the early expiration wouldn't have been mine. What a mess!
My first shot was yesterday for their "pre-sale" system, which didn't seem to work at all at first. Despite an early start at the recommended 9am, I was over an hour in an apparent queue facing dire warnings not to refresh the page or face losing my place. A place I'm pretty sure I never had. Eventually I had to leave it to go to the doctor's, but four hours later I looked in again just to see the same page with its useless spinning logo and no information. Later still I tried again and this time it did make me an offer, but of what appeared to be not very good seats (although still at the full price of £70 a shot) so I gave up to try again during the general public sales this morning.
Again, I went for it at 9am, and this time I was offered seats which became magically unavailable three times mid-transaction, until I ended up with something similar to the ones I balked at last night.
What a disaster area: websites aren't supposed to keep changing their minds. Online booking has taken most of the sting out of getting tickets for big gigs these days: you pretty much get them or not, all the nonsense of queuing or hanging about on phone lines is supposed to be behind us. The big agencies cope with it all the time – is this the best
Glasgow's own TicketSoup
can do? There's no excuse. If they haven't got the server capacity, they
shouldn't be in the game.
At least I got my seats - my sister nearly didn't at all. Eventually she was stuck with single seats in different blocks, despite being offered and then arbitrarily refused pairs in other places on several occasions, just like I was. She couldn't get the pre-sale thing to work at all.
I can't help feeling that the SECC and TicketSoup should be refunding their obscene £8.40 booking fee per ticket to each and every customer they messed about today and yesterday – it's hard to see what service they've provided for it. If they can't get the servers in place, they shouldn't have the cheek to take people's money.
I mean, £70 a ticket is steep enough, but adding on TicketSoup's pound of flesh plus their cheekily inflated postage fee, I expect a seat on the edge of the stage and a lift home in Roger Daltrey's Range Rover with a trout supper from one of his fish farms, thanks.
Still, on the bright side, it's given me something other than cancer to rant about here for a bit. And now, at least with my tickets booked, I can look comfortably forward to seeing Pete 'n Rog creaking across the stage on June 12 and settle back down to the Recuperation-Go-Round here in the Tumourland Fun Park.
Which is going well, thanks for asking. That's two weeks today since they let me out of hospital and – boredom and tiredness aside – I'm not feeling too bad.
The stitches came out without incident last week, and the wound is well-healed, nice and clean and infection-free. It does still look a bit swollen and sound a bit squelchy, but my GP tells me that's fine. I've also had my steroids cut down to a relatively low dose, which I'm pleased about, given how unpleasant I found the high doses this time round.
There are still some other side-effects: dexamethasone seems to come with a whole package of 'em - there are some here on Wikipedia, but I'm not sure this is even the full set. You might remember that around this time last year I was singing the praises of the Joy of Dex in this blog. Well, not so much now, I have to say. I don't doubt it's an amazing drug, but I'll be delighted to be off it as soon as I can.
The worst just now has been the effect it has on my eyesight – I go through periods where things just seem to go quite out of focus, pretty much as if I'd taken my specs off, and others of odd photosensitivity, where I feel I'm either lurching about in the dark, or quite dim lights seem very bright. All of which makes reading, from paper or a screen, quite tricky at times. Which is a bugger given what I do for a living, and is also why it's been a bit since I've updated this blog. Still, I'm told that's temporary, and it does seem to have been better over the last couple of days.
The other side-effect which seems to be clearing up is an occasional intense pain in the muscles and joints of my legs, which has given me a couple of nights of really terrible sleep. It doesn't seem to be in a consistent place, and moves depending on my position, as if it's coming from my back. I'm hoping this one's just a side-effect – if it turns out I've got a bad back on top of brain cancer, I'm going to be very upset with someone. Probably George Osborne, since I'm fairly relentlessly furious with him anyway, and it would save effort.
Anyway, that's all stuff I will find out more about on Tuesday, which is my next oncology clinic, and also the day I find out what's happening with my new and exciting combination chemo, the one which will stop me enjoying red wine, cheese, and most of my other favourite things in what I suspect will be interminable-seeming 11-day cycles over the next few months.
Still, more on that next time – I'll keep you posted after my winey, cheesy weekend…
Monday 21 January 2013
Yes, I'm alive, thanks… just a little late. I've been home since Friday: lighter another chunk of brain but feeling pretty well on it; missing some hair and with the baldy patch tracked with some brutal-looking sutures to meet this season's trendy freshly-vivisectioned look, but I was never that lovely anyway.
So that's the Good and the Ugly. As for the Mad… well, we'll come to that. It's been a hell of a week, and hospital was harder to deal with this time for a number of reasons. It's good to be back here on my couch, tired but relieved.
Last year I was blithely blogging from my bed on the evening of operation day, which allowed me a certain professional smugness - reporting live from the field of war, all that stuff - and this year I'd planned to do much the same.
And I nearly did. Tuesday, the day the actual cutting took place, went pretty well.
I had a decent enough night's sleep, and it wasn't any surprise that at 6.30am I was being ordered both into the shower and into a charming little surgical combo of toeless anti-DVT stockings, backless hospital pattern-printed mini-dress, and a pretty much everything-less pair of what are euphemistically referred to as "modesty pants", but which fulfil neither part of their name well (if it hadn't been for the leg-holes, I'd have been inclined to put them on my head, and while I realise a paper shower cap would be a useless garment, even when applied to the right end these weren't far behind… not the roomiest fit I've had, they really weren't far behind).
But that was all OK, because it meant things were underway, so with this brief adventure in medical cross-dressing and a quick email-check done, I was all set and greeting Clare, who'd come in just in time to catch me being wheeled away to the recovery room for pre-op prep, much earlier than I'd expected.
As with last year, I don't remember much after that; there was a brief chat with the anaesthetist, a wee shot of his wares, a bit of a sore arm, and then nothing for four or five hours, by which time I didn't seem to have so much as moved. Obviously I'd been in an operating theatre and had some very intricate squelchy things done in my head, but as far as I was concerned I was in the same place as before but the anaesthetist was telling me it was now 1.20pm. Pretty soon I was back in my room and Clare was in again to see me. At some point I also spoke to one of the surgeons who told me that the operation had gone very well, they'd grabbed 98% of what they were aiming for, and that was a very good result.
So Tuesday was a fairly full day, what with coming round, a Facebook and Twitter announcement along the lines of "surgery over, still alive, both 'woo!' and, indeed, 'yay!'", dinner (5pm is a big event in hospital), another visiting session over the early evening, a decatheterisation (much less eventful than last year's) and subsequent return to my feet (and to using the proper loo, also a major deal). Busy, really, but I did start to blog. Then midnight knocked on, and despite feeling that I'd been rattling away for some time, I'd only written something in the region of 160 words (the fashion show stuff above, pretty much), and I was feeling tired, so I thought, "well, I've done my bit for now – best I finish this tomorrow when I can make a better job of it."
And that was the plan.
Until Wednesday happened. And so to the Mad...
If anyone ever offers you a night of sleep deprivation while on a massive dose of dexamethasone, topped off with an anaesthetic hangover and a dihydrocodeine hair of the dog, don't take it. I mean, do what you will in the spirit of experimentation and all that, but I really don't recommend it.
By lunchtime, twitching with steroid paranoia after a morning of fractured sleep peppered with bits of nurse chat from the desk outside my door as they dealt with at least half a dozen other people's emergencies, I'd invented my own MRSA outbreak. I had enough logic still about me to realise that since they still appeared to be checking people in and out and letting other patients wander down to the canteen, we probably weren't all crawling with antibiotic-resistant superbugs. But I still had to ask, and felt much better once the nice, if slightly concerned, nurse confirmed I was probably hallucinating on dex; I'd had steroid anxiety before, after all, so I knew the feeling, it was just that the previous occasions had been at home, milder, on a much lower dose, and without also inventing a major crisis in a busy hospital.
Still, she was soothing, so by the time my parents came in to visit me mid-afternoon I'd calmed down properly, not perhaps to my most lucid, but enough for them to go home apparently happy that I was fine, if a bit understandably woozy. Which was good, because not so long after they'd left came the teatime terror.
Alone again once more, I was now onto full-blown anxiety. At least this time I'd invented no little conspiracies, but that only helped a bit. In every other way, this was much worse because the panic was just so much more intense, yet utterly groundless: just the raw emotion with no underlying cause. That's horrible, not least because it's illogical. How can you tell yourself not to worry about something if there's nothing you're worried about?
Then the nice nurse came in to ask me how I felt.
Seconds after my slightly higher-pitched than normal response, "utterly and unaccountably anxious and tense", and possibly on sight of my white-knuckled grip of the sheets, she was on the edge of the bed gently listening to me explaining as measuredly as possible the unfounded nature of this blind, screaming panic, and that I knew it was the dex, but I couldn't bring myself down from it. Some more soothing words and a phonecall for pharmaceutical advice ensued, and diazepam appeared. And that, more or less, was that.
By the time Clare visited at 6.30pm, I was fine. Still a bit twitchy (although she says I looked like I'd had a terrible shock), but pleased to see her and feeling all right. Still, I didn't blog that day. It should be an internet rule – don't post while drunk, and don't blog while bonkers. It's for the best.
After a cut in my dex prescription, another wee diazepam around midnight and a unilateral decision from me that my choice of painkiller would from then be paracetamol rather than the DF118s (as dihydrocodeine is apparently known to the aficionado) which I felt were impairing my logic, I discovered that I could also now lie more-or-less flat without twanging the wound, and I had a great night's sleep.
By Thursday, I felt fine. It was a good day. Friday was better because they let me home a day earlier than expected. And I've felt pretty good since then too, thanks. The staples itch a bit, but I've had a pleasant, if inactive, weekend.
So you're getting this blog post now, in my own good time. Sorry, but there you go.
Anyway, thanks for all your kind messages of support; they're always appreciated, as are all comments left below.
And Happy Monday! I'm having one.
Remember, if you do want to follow me on twitter, look for @G_N_S
Monday 14 January 2013
So here I am once more… in hospital, awaiting surgery.
I've been here in the Southern General since this morning, during which time I've spoken to a couple of surgeons, an anaesthetist and at least one another doctor, and I've been scanned, examined, weighed (that was a bit scary) and had blood tests done.
Most of the time has just been spent sitting around, though. That's pretty much all I need to do, now.
Until the morning, when they'll be cutting my head open again.
That should go pretty much like last year. I won't be allowed to eat or drink from about midnight, and at some point in the morning I will be chemically knocked out and the cutting will commence. All I remember of last year's adventure is being taken to a prep room, having a needle put into my arm, told that the coming injection might be cold and a little painful, and then thinking, "oh, yes, that is a bit chilly… and a bit sore… actually, it's really becoming quite…" and then knowing nothing until four or five hours later when I woke up to see a nice man offering me morphine.
I'm expecting much the same this time. They'll be going in though the same hole, and ideally the same wound, too, so that's nice. No more bone cutting, all going well: just slice their way in through the scar, pop off the titanium plates or clips which are holding in the piece of skull which was jigsawed out a year ago, and commence the cerebral scrape. The aim is to get out as much new tumoury stuff as they can, ideally but not necessarily all of it, tidy round, get out and lock up. Last year I was back on my feet in hours (that delay mainly because I was still plumbed into a bag, and it's not really very amazing at all how that restricts your mobility) and I'm hoping for the same again.
I'm not getting to take part in the PARP inhibitor trial, as it turns out. Because of the procedures that govern medical trials there would have been a delay of perhaps six weeks to let me join that, and no-one, including me, seemed entirely happy with waiting that long before the scrape-out. So I'll miss the chance to help out with a science project, and be deprived of the comedic value of its name. But, never mind, I'll go for a Chinese meal when I get out and have prawn balls and squid rings instead. Even at 44, that still cheers me up.
Anyway, it was only a trial. The only people who really lose out are those running it, and they're my doctors and seemed pretty keen that I didn't wait. True, they lose some data, but there will be more. From my perspective… well I'd liked to have helped, and it might have been a wee extra which might have helped me too, but it equally might have made no difference to me at all, and I probably wouldn't have known one way or the other. I'll get the gold standard treatment regardless – and that's tried and tested.
So now it's just after 9.30pm, I've just had some toast, I'm sipping a coffee, and that will probably be the last I'll have before the midnight fast. Apart from the fact that the hospital will ensure I stick to that, I wouldn't break it anyway – I've no desire to throw up into my own lungs while under anaesthetic.
After I've finished my coffee and this blog entry, I just have to wait, and later try to get some sleep. True, I'm a little anxious – after all, they are going to open my skull again, and they have really whacked up my dexamethasone pre-operation, which might not help in that respect – but I usually sleep well and I really have no reason to be concerned, so I'm not going to be. After all, I'm getting some of the best care in the world here.
The risks of second time surgery are higher than the first time in, but only very slightly. My attitude is that I've done all this before – and coped very well.
So, as Whitesnake sang, "Here I go again", except I plan to do it with less ridiculous hair. That's including after they've shaved up the right side of my head.
I should be going in mid-morning sometime, and that means I'll be awake for or during afternoon visiting hours and can come round to see Clare.
I'm looking forward to that.