Monday, 23 July 2012

Put a peep-hole in my brain…

So I got to see the latest photos of the inside of my head this week. There’s very little going on. You may not find that terribly surprising.

It cheered me up immensely, though. Since no news is good news, and I hadn’t heard anything from the head doctors since my MRI at the end of June, I was pretty confident there would be nothing to report. But it was still nicely reassuring to see the scans from March and June side-by-side and note little change.

There is a slight difference. The newer scan shows a kind of rind around the cavity where my tumour used to be; apparently this has been noticed in a couple of other people who have been on the same vaccine trial as me. I’m assured it’s nothing to worry about since it doesn’t represent any cancer growth. The tumour site is the same size as before, which is the main thing.

So it looks like the treatment is working, which is hugely cheering. Glioblastoma is an aggressive cancer which likes to try to grow a new head when it can, but not this time. Today is not that day. And I’m planning on holding this position for years.

I certainly feel well enough. I'm still unexpectedly hit by fatigue at odd times, but I can deal with that. It accumulates throughout the chemo, apparently, so now the bursts of tiredness caused by the daily zapping I received in the first few weeks of the year are at last receding, they're replaced by seemingly equally unpredictable spells of exhaustion brought on by the harsh chemicals. It’s nice to have a seamless change-over.

My physical signs are good. I feel generally stronger and the stairs to my south-side eyrie no longer seem so excruciating. My platelet count is rising closer to normal, I’m told, and it looks like I won’t need a blood transfusion to fix my anaemia, as was suggested last month. And I've managed to regain the 20 pounds or so I pretty much excreted during that little spell on the campylobacter diet back in May. I'm less pleased with that one: after all that, can't I at least keep the weight-loss?

Still, it was all looking about right, so with no other impediment I went back on the poison on Wednesday morning. And it was OK.

A spot of encouragement for anyone reading this who's heading for the same treatment: it does get better. I've now had five of six rounds of adjuvant chemo and, while it hasn't always been easy going, it hasn't generally been all that bad.

This last one has been fine, or at least a good as can be expected. I felt almost no ill-effects for the first four days of the five-day course, just a spot of tiredness on Friday afternoon. I was knackered yesterday (Sunday) and this morning (Monday) and have slept for most of both days, but that has been all. Given the horror stories I hear of people receiving intravenous chemo, I'm happy with my little exhaustion pills.

Last month's was similarly easy, except the tired days were two and three. May was bad, but that was because the campylobacter got to do me over while the chemo held my immune system's arms – it was unfortunate, but not an inevitability. April was the first on the highest dose – 400mg of Temozolomide daily for five days – and I didn't feel great, my stomach was irritated and I had no energy, but it could've been worse. March, which was at a lower dose, and the six weeks of daily dosing during the radiotherapy in January and February, at a lower dose still, seemed to cause no side-effects at all.

Of course, I still have one to go. I could react badly and have another May all over again, but it seems improbable. More likely is that one of my various levels could drop below the threshold at which I'm allowed to take the last course; but even that seems unlikely now and, even if it happens, there seems to be some doubt as to the value of the last couple of adjuvant rounds. Which is hardly encouraging when you're gearing up for a five-day poisoning, but there you go.

Anyway, that's in three weeks. In the meantime, I'm off the steroids as of tomorrow morning, which is just as well because, although they helped keep my brain smaller than my skull when I needed that doing, they are quite nasty in other ways. Their withdrawal means no more Losec, though, and I  will miss that; it'll be back to the chronic indigestion and chomping Rennies for me, I suspect.

And then, sometime around late September, the next scan looms like a monolith. But it will cast no shadow over the preceding weeks: I'm getting on with stuff. Then we'll see what we will see.

And it will be fine.

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