This time last year, I was an unaware, unworried, whole-life-ahead of me 34 year old. I could still drive back then. I could still drink a beer. I worried about my weight. About whether I looked stupid in those shoes. (I did).
I’d had one or two strange episodes on the bike a couple of months apart, but back then I didn’t have to wear emergency information around my wrist every time I left the house. I could still go swimming with my kids.
Today I’ve had 12 seizures. There will be more before bed time. The drugs I take are working: without them, I’d be having more. And they’d be far more intense. Control, not prevention.
This is me now. Me for a few weeks, at least.
Pretty soon I’ll have a biopsy, though I still don’t know when. Then everything could change again. It could map out the whole of the rest of my life, or it may just deliver more uncertainty. Radiotherapy? Chemo? Something else?
This is me now. Uncertainty is what I’m all about.
Are you planning a holiday this year? Er, not sure. Are you getting that house extension? Don’t know. Will you be racing again soon? Ah, maybe. We should meet up in the summer? Oh yea, definitely. Definitely, we should try. Can you speak at this event? Mmm, don’t rely on me. Shall we do a birthday party for the kids next year? Let’s see.
Will I get to 37?
It’s not all bad. Uncertainty brings with it determination to make the most of every minute, whether with my family, my friends or my bike.
Though the seizures are more frequent than ever, the cocktail of drugs – currently three different ones in seven different pills every day – have dampened them down. They don’t throw me off balance like they used to, they don’t stop me in my tracks. My speech is still affected, but more mildly than before.
Over the weekend I experimented and succeeded in staying on the bike while they were happening. A touch more medication could dampen them so much I’ll hardly feel them. They’ll still be there, that’s for sure. But they might not bother me so much.
And then I’ll be back on the bike properly. Then I’ll start racing again. Then I won’t be in such disarray. Then I’ll know where I stand. Then, all these things I’ve been saying ‘then…’ about for the last year, will happen.
Then again, maybe not.
Let’s be honest. Given the huge increase in my seizures, and the uptake in blood in my tumour, I don’t fancy the chances that the biopsy will reveal all is stable. I now do know what a blood uptake level of 4.8 means. It’s not great news.
Will I live to see 37? Yes, of course I will. But who knows whether I’ll be as fit or able as I am now.
But I’m in a good place. I’ve explored with my councellor whether there’s some deeply hidden depression or anxiety that’s going to explode and take me down. We don’t think so.
I’ve finished my book, and there’s plenty of media interest for its publication next month. When I started writing, I didn’t know if it would get the chance to see it in print. It would be overblown to call it a legacy, but I’m pleased that it’s complete.
I am riding my bike. I am fit, though I am not well.
On sunny days like this weekend, I can put in the miles. The Tuesday and Thursday night knock arounds round the reservoir are about to start again. The Wednesday night time trials are already underway. There are road races around Essex almost every weekend. There’s a massive mountain in France called Ventoux that I’ve never climbed.
I think about these things, and I wonder: maybe, just maybe, there’s a strip of road there for my wheels.
Just after I turned 35, I promised that despite my newly diagnosed brain tumour, I wouldn’t get off my bike until I absolutely had to. It may have been a pot-hole and puncture filled ride this year, but I’m still right here in the saddle.
On the eve of 36, I renew that pledge. I’ll take every opportunity to ride. I’ll take every ride as it comes. And I’ll ride each one as if it were my last.
Make that 13 seizures.
A good friend called Richard is swimming 5km on Friday in aid of The Brain Tumour Charity. That’s 200 lengths of the pool to us bermuda shorts wearing toe dippers.
I shan’t give you the spiel. I hope my words have already spoken for themselves.
Except to say that if anything I’ve written here during my 35th year of life has left you moved, or impressed, or fearful, or outraged, or thankful, donating £5 to his feat of endurance might be a good way to reflect it.
I hope you will. And please do tell him I sent you: http://www.justgiving.com/paul-rich-5km-swim