Wednesday, 27 February 2013

Just getting my act together

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

Back on the chemocoaster...

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 pat├ęs, 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

People try to put us down... Just because we're still around…

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…