Even three weeks ago you would have read on these pages that the biggest challenge I faced was to get my brain tumour-induced epilepsy under sufficient control that I could pedal out the long miles again on my bike.
Right now, I’d just like to make it through a full night’s sleep.
It’s like I’ve got newborn babies again, disturbing my slumber every couple of hours. Only with no smiling, gurgling loveliness in the morning.
My epilepsy seems have have cranked itself up a few notches to welcome in 2013.
At 5am on New Year’s Eve I had an epileptic episode while asleep, my first that wasn’t related to exercise. Well before Big Ben had struck midnight to bring in the New Year, I’d had another one.
Since then, my nights have been punctuated by further seizures. (By the way, I don’t mean the full on tonic-clonic shaking and unconsciousness that most of us associate with epilepsy. Mine are called focal and partial-complex seizures, a kind of epilepsy-lite.)
Six seizures in one night is my record. I’ve had a couple of fives, a couple of twos, and a one. For one blissful night, I slept right through without any seizures at all.
The daytimes, strangely enough, are pretty clear. I’ve come close a few times, but no full episodes. I’ve even got through a couple of rides without an attack.
But clearly, this all indicates significant change. So I didn’t feel too bad about dropping a little something into my neurologist’s inbox about it, to welcome him back to work after the winter break.
When I managed to speak to him he did, for the first time, seem a little concerned. Not panicking, just a little more serious. Previously, he’d jokingly brushed off changes in my seizure patterns with a “that’s just how epilepsy works” and yet another prescription to increase my medication.
This time, he was less dismissive. The plan is to up the dose a little more, to add a new drug into the mix, and to take a jolly good look at my MRI scan in February.
(If I didn’t already have one booked, I got the impression he would have organised one.)
For the first time, almost as a throwaway comment, he said that if things were changing, well then we’d probably have to take a look at this tumour after all. You know, do a biopsy or something.
A biopsy or something.
What that actually means is drilling a hole through my skull, and then through the folds of grey matter beneath, to reach the tumour lodged deep inside. Then someone will stick a needle through the aforementioned hole and suck up a glob or two of the offending matter, shove it onto a microscope slide and take a closer look.
A biopsy or something, when its done in the brain, is actually far from risk free. In fact, its classified as surgery. That’ll be brain surgery, then.
We’re not there yet. He’s still pretty convinced it’s just epilepsy being epilepsy, and that these clusters of seizures – something he says he sees a lot of (but then again, he is a neurologist) – are not necessarily down to tumour growth.
In the meantime, he’s prescribing some extra anti-convulsant medication: some short-term use pills that wrap my brain in a bit of extra cotton wool to deaden the electrical signals, hopefully offering a chance to get some undisturbed night time shut-eye.
I have, of course, Googled the new drug and I don’t much like the look of it. It’s often prescribed for anxiety, which to me feels just a little too close to anti-depressants. That’s a road I don’t feel like I yet – if at all – I want to go down.
Strangely, I’m not particularly downcast about the latest developments in my skull.
I’ve quickly adapted to the night-seizures – oh, another one? OK, let’s get it over with, I was enjoying that dream – though I’m yet more sleepy during the day.
My neurologist’s continued chirpiness about the whole thing gives me plenty of cause for calmness. We just push on, he says, we just push on. No need to panic.
I’m philosophical. My situation is what it is, and worrying about what might happen in the future isn’t going to stop it from happening. I know I’ll have to deal with it eventually, so why try to deal with it right now? My family and I already have a lot on our plates.
Or, as the incessant watching by my children of The Lion King has imbedded on my somewhat malfunctioning and epileptic brain: hakuna matata.
That, and take any chance you can during the day to grab some extra kip.