Yesterday I popped into the Beatson for a wee bleed and to pick up this month’s bumper bag of harsh chemicals. My last. That’ll be six monthly poisonings under my belt come Sunday, with no more due.
I should have got this round of chemo last week, but my white cells were low and my consultant regarded it as “a bit gung-ho” to dole out drugs which batter the immune system while it was already punch-drunk. So the regular envenoming was deferred for a week, my counts returned to normal, and this morning I took the first of my final five doses.
Feeling fine so far.
I’d like to think it’s my last round. It’s the last I’m scheduled for, and the last I’ll get as long as things remain as they are. If one of my three-monthly scans shows anything tumourly trying to sneak back, I’ll be back on the Temozolomide sharpish, but I’m not planning on that happening. I’ve told it not to.
I had hoped that the end of the chemo would mean an end to the off-and-on tiredness which has plagued me throughout this whole process. I’d reckoned that since it takes a month for me to recover sufficiently between treatments, then a month should be enough to get back to normal.
I’m now told that the fatigue can last up to six months after the chemo stops; it depends on the individual, and there doesn’t seem to be any way of telling how it will hit, other than that younger, fitter patients recover more quickly. That includes me (no, really) so with a bit of luck it will ease off sooner than later. Ideally before I go on holiday.
The other thing I wish would just bugger off and leave me alone is the constant stiffness in my legs and occasionally arms. It’s a bit like the sensation you get the day after a long hill-walk, but all the time (I can’t really compare it to many other kinds of exercise, having spent most of my life avoiding them, but I have been known to enjoy the occasional countryside meander). If I sit still for too long I need to haul myself up with my arms and then waddle rather than spring gazelle-like across the room, as was once my wont. This, I gather, is a side-effect of coming off steroids; they cause some muscle reduction, but also a loosening of ligaments in the back and legs. I’m told pregnant women experience something similar: I’m hoping this is the only symptom we’re going to share; I could do without morning sickness, haemorrhoids or childbirth.
But the really grim symptom of all this is the news that I may not be able to drive again for a very long time. I had previously been told that I would be likely to get my licence back a year after the surgery. That was on December 1, so I was starting to look forward to my licence's return. Counting down, even.
Now I’m told that it could be at least two years, and no-one’s very sure from when. It all depends on when the DVLA (not my doctor, apparently) decides my primary treatment ended, or indeed what my primary treatment was.
If they decide the primary treatment was the surgery (which my research suggests they won't) then it’s another year from December. If they decide it was the radiotherapy and first round of chemo, it’s a further year from mid-February. But if they decide the adjuvant chemo I’m just finishing off is part of the primary treatment, then it’s two years from now. And if I need any further treatment during that period, the clock resets.
This is quite crushing. Quality of life is pretty important just now, and not being able to drive is a massive limitation. Blind 75-year-olds and mental teenagers are allowed licences; what makes me less safe than them?
Well, the huge hole in my brain, apparently. But I have only had the one fit, and that nearly a year ago (it’s how I found out about the cancer in the first place). Since then I’ve had the tumour which caused it cut out, the area around it zapped and poisoned, and I’ve taken anti-epileptics daily. I haven’t so much as twitched in all that time. Surely I’m safe to be behind a wheel?
It seems the DVLA thinks not. They won't even ask my doctors for their opinion, I'm informed; the decision will be made by a government medic who will never meet or examine me, based on some forms which don't contain space for my doctors' input.
I understand the reluctance of officialdom to have people with large chunks of their brains missing hurtling around the countryside in cars. But I'm being checked on very, very regularly. Even now the chemo's over and my monthly trips to the Beatson have come to an end, I will still have three-monthly scans. Surely these could be used as the basis for my continued right to drive, with my licence renewed quarterly every time a scan gets the all-clear? It wouldn't be hard to administer electronically, and it would save a lot of misery for a lot of people in my position.
The next scan is in September. It was scheduled for the 28th, but by the time I got the date I’d booked a holiday, so it was moved forward to the 19th. Which is fine, but it means I won’t get the results until I’m back, so I’ll spend my two weeks in the sun Not Knowing. Looming capitals intended.
Still, it should be fine. June’s cerebral photo-shoot wasn’t substantially different from March’s, and I’ll have just finished my treatment, so there’s no reason to think September’s will show any changes either.
So if it is OK, can I drive at least until the Christmas scan, please? It would at least give me something immediately positive out of the cycle of quarterly anxiety I'm going to have to get used to: the build-up to each scan, the wait for the results, and the hoped-for relief when they come back clear.
Until they don’t. But that might (just might) never happen, or at least not for years. Until then, I could be driving safely and happily.
Just a thought.