Sunday, 24 June 2012

That went pretty well. Now for the scary bit...

Well, that wasn't at all bad. Sorry to disappoint anyone out there looking for further tales of dehydration and high-velocity gastric horror, but this round of chemo has pretty much gone as well as can be expected.

True, I took a couple of days off work, but that was more through tiredness than anything else. And since I'm told I'm a little anaemic, that's not surprising. I just slept to get through that. Other than that, it hasn't gone badly at all.

As I write this, on the evening of day five of five, I am very tired. But that's about it. I've eaten normally throughout, and none of the threatened nausea has manifested itself this time. No Saharan thirst, no volcanic Simon Cowells. I feel I've had a bit of a result.

This is my third round at the maximum dose of 400mg of Temozolomide a day. Previous rounds at lower doses had no side effects, but my first at 400mg in April hit me quite hard, leaving me tired, disturbed in the gut, and generally knackered. May's was much worse, coupled as it was with a cheeky wee dose of campylobacter, a normally fairly easily-squashed food poisoning bug which the immune-system reducing powers of the chemo allowed in by the back door to flatten me for three weeks as it left violently by the same route.

But this time has been fine. Day One, Wednesday, was no problem at all and I was at work as normal; but that had been the pattern of the previous two months, so I was still suspicious. On Thursday, I followed the chemo-consumer's instructions carefully: up early to take my anti-emetic, wait 45 minutes before popping the poison (the rules say "at least 30 minutes", but I like to be on the safe side), then wait another 45 minutes before eating and taking my usual daily drugs (Keppra and Losec and dex, oh my!); then it was a case of waiting. After another 45 minutes or so I felt a bit shattered and rather unsure of what my innards were planning, so I called in sick. But as it turned out I simply slept for a big chunk of the day.

Friday was much the same. Saturday was better – I went to my cousin's wedding without serious incident. And she did, as promised, donate her favours money to the Beatson - £200, no less, which is a lot of sugared almonds. Thanks Gael, and all the best to you and Robert.

Today has been fine. I was out at the allotment – admittedly sitting in a chair supervising Clare (I love gardening, I could watch it all day) – but still, I was there. I even planted some garlic. The plot's looking great, we're getting some crops in, and there was massive amusement to be had from the shape of some of the carrots. Esther Ranzen realised it way back: give the great British public some campaigning consumer journalism and a singalong and they'll love you; show them a rude vegetable, and you'll stay in work for 20 years. I even made it to my niece's 11th birthday party and endured a squeal (I believe that's the collective noun) of about a dozen pre-teen girls without relapsing.

So I'm tired now. But it's Sunday night, I can sit and doze in front of the telly. I have no more chemo to take, and I feel pretty good. Tomorrow should be a normal Monday.

There is one more milestone this week. On Wednesday I have to go in to the Southern General for my second MRI since the zapping stopped. This is the first of these scans which may or may not be able to give any useful information about the state of the hole in my head. The first really only mapped out the radiation damage around it. This is the first which might show whether anything nasty is trying to make a return.

I'm a little bit scared about that.

I should put that in perspective… I'm trepidatious, rather than wracked with anxiety. I don't really expect anyone to find anything. First, because it's still quite early to tell – this might be the first one which can show more than the radiation damage, but it might not – and second, and most importantly, because it's just early; people do die quickly from this cancer, but I'm not planning to. I'm relatively young, relatively strong, and I'm aiming for the decades rather than months end of the available scale.

Anyway, I feel better all the time. Bad reactions to the chemo aside, I'm suffering less fatigue, working for longer, and generally feeling that I can get on with things more.

That's got to be good. 

Wednesday, 20 June 2012

Back on the venom-go-round

Oh well, here we go again. Yesterday I picked up my bumper bag of poisons from the pharmacy at the Beatson, this morning I started taking them again. Could be fine, could be another five days of unpleasantness. We'll see.

I should have begun this round of chemo last week, but it was deferred. My consultant said he was considering that anyway, to give me a chance to fully recover from May's horrors, when the nastiness didn't stop after five days but dragged on for a further three weeks courtesy of a wee food poisoning bug called campylobacter. But when he saw my blood test results, it was decided – although not terribly low, apparently they were below the allowable threshold. No chemo for me that week.

This week I'm much better and up for a good old envenoming once more. I'm a little anaemic, the nice registrar has confirmed, but not enough to put it off further.

It's harsh chemicals time.

It can't, I reckon, be as bad as last time. May's chemo not only burned its own trail of destruction, but kept my immune system suppressed enough to allow a bug I would normally have swatted in a few days get a proper hold to the full extent of its colon-tormenting abilities. I'm back to normal, now – surely I only have the chemo to worry about?

Well, as I said, we'll see.

There is always the chance I'll get through it with no side-effects at all. I'm not betting on that one, but you never know. I had none until I was moved onto this highest dose – 400mg of Temozolomide every day for five days, if you're interested – and apparently you can get used to it.

We'll see.

That would be good. Just as last month's little episode gave me some serious doubts about whether I was going to be able to attend my own wedding standing up, this weekend my wee cousin gets married. Partly because of me and partly because her husband-to-be has recently lost a relative to brain cancer she has decided not to give out favours on her big day but to instead donate the money to the Beatson. It's a generous sum, and I'm very grateful. The least I can do in return is pop along and eat and drink at my aunt and uncle's expense.

But, as I said, we'll see.

Even if I don't just sail through the chemo, with the campylobacter now battered out of my system I should at least expect to be back to normal by Monday. Which would be good not only because I've really had enough time off work recently as it is, but also because the following weekend some friends of mine have also very generously decided to hold a benefit gig in aid of the Beatson at GHA Rugby Club. It's a smallish affair, with only around 120 tickets, but they've already sold a lot of them for a suggested donation of £10 a pop (if it's a donation rather than a price, the Beatson can claim Gift Aid, too). Combined with a bit of a raffle, they should raise a very decent amount indeed – they're aiming for £2000. Colin, Graham, and the rest of The Ginhouse Rocks, I thank you. See their website for ticket info and a link to their JustGiving page for the Beatson.

Which brings me to another point. My own JustGiving page is currently sitting at £2550. With the proceeds from the gig, plus my cousin's contribution, we'll be looking at increasing that by quite a lot – quite likely to well over £4000. The sums won't necessarily go through my page, but they will go the Beatson, which is the important bit.

What would be really nice would be if anyone who enjoys this blog - either on or especially readers – chips in just a little, and we get the combined total up to £5000 this summer. That would be a tremendous result.

We’ll see what you can do. I'm sure you can.

Saturday, 9 June 2012

Living the dream

I've been living the dream. Oh, yeah.

Didn't put my heart and soul into getting it, didn't spend my entire life thinking only of it, didn't need it, didn't in fact under any circumstances want it. But I've been living it nonetheless.

Recurring nightmares are a bugger.

This one went like this: I'd have this terrible thirst of mouth-cracking, throat-gumming, Saharan proportions, but I'd also have a pint tumbler and a nice cold water tap, so all I had to do was draw myself a nice, refreshing glass; except when I did, however deeply I drank, my thirst would remain unquenched. I'd drink more and more and more, but I'd just get thirstier and thirstier.

I’d had that one occasionally for years. I Googled it recently and there are all sorts of theories about its meaning. All mad, of course: what it in fact meant was that I'd been sleeping with my mouth open and what I needed was the actual real-life glass of water I keep at my bedside; a quick sip and I'd go comfortably back to sleep. So much for dream interpretation.

Thing is, for a couple of weeks there, much of my waking hours were like that. I had a terrible thirst, but drinking water wasn’t helping much in quenching it; I remained bone-dry and anyway felt a bit too ill to drink very much, or eat anything at all. I was also weak, and tired, and really pretty floored by high-velocity diarrhoea which looked like a petrochemical by-product and left the Simon Cowells feeling like they’d been skelped from the inside. Sorry for that image.

It all kicked off on day two of my most recent chemo, of course, so that would be the cause of that. Not nice, but just another three days, and all would be well…


By the following Monday, after a pretty rough weekend, I’d been off the chemo for 24 hours, and if anything felt worse. Tuesday was no better, and Wednesday wasn’t too great either. This was getting a bit worrying, partly because I wasn’t certain the human body should be able to pass that much effluent without having first taken anything in, but mainly because I was getting married on the Friday and felt I should probably be there for that.

I was trying manfully to pull myself together with the aid of groaning and Imodium, set in long periods of inactivity punctuated by very short bursts of extremely urgent action, but Clare did the sensible thing and called the Beatson, who told me to keep taking the Imodium but to get to my GP for blood tests, and start taking this stuff called Dioralyte which apparently rebalances your sugars and salts and lets you rehydrate. Marvellous stuff. I instantly stopped being thirsty for the first time in over a week and felt so much better.

So we got married, you’ll be pleased to know, without incident. My innards decided to forever hold their peace, which was nice of them.

It was a lovely afternoon: just us, our parents and siblings plus a registrar in one of Glasgow’s plusher West End hotels (true, most of us are southsiders and some from Lanarkshire, but we got a special visa as long as we promised to go back again). The whole ceremony was over in about 15 minutes so we could get down to the important eating and drinking part from lunchtime. It went well.

Marriage wasn’t necessarily something we’d thought we’d do; Clare for feminist reasons and me because I had no desire to seek validation for my life choices in the dubious eyes of the state or the non-existent eyes of God. But it suddenly seemed right, so we just did it anyway.

I didn’t really pop the question; in fact Clare did. Just after midnight on the 21st floor of a Gran Canarian hotel overlooking a concrete skate park, on a balcony with a pretty low balustrade and the light behind her. I felt I should say “yes”.

So I did, and we did it. We’ve been married a fortnight now and it’s great. We’ve already had a luxurious night at Marr Hall at Bishopton, and there will be some kind of honeymoon and a belated stag do later in the year.

I’m feeling a lot better, too. Not entirely back to normal – I lost more than 20lbs very quickly through this particular experience, and that takes its toll, even on those of us who can afford it – but pretty much. Seems I had some kind of common food poisoning bug on top of the usual chemo horror, and it’s running its course.

Which is good. Because I’m back on the anti-cancer poison from Wednesday. Wish me luck.