A patch of grass

PatchOfGrassReturning from a 25 mile cycle ride last night, at about 400 meters from my front door, I looked down at a plain bank of grass by the road side and a huge grin spread across my face.

It was at this very spot, in October 2011, that I had my first epileptic seizure.

Returning from a long cycle ride and nearly home, I’d squirted a drink into my mouth and the stream of liquid hit what at the time was a broken tooth. A sudden buzzing spread from the tooth, across my face and down the right hand side of my body, which began to go completely numb.

Afraid I was about to tip over, I leapt off the bike and sat on that small grassy bank, wondering what the hell was going on. Old songs from my childhood – songs I hadn’t heard for 30 years – started replaying in my head.

“I must have hit an exposed nerve in the tooth,” I thought with the left hand side of my brain only, feeling as if the right had simply shut itself down.

After five minutes, the strangeness subsided. I shook myself down and got back on the bike.

It was the first of hundreds of these episodes I’ve had since that day, what we now know are called partial-focal epileptic seizures. They are brought on my tumour growing and pressing on the surrounding parts of my brain, and that day was the first time one had ‘broken through’.

So why the grin when passing that place again?

Regular readers will know it’s been a bumpy ride this year. On New Year’s Eve I had my first seizure that wasn’t brought about by cycling or running. As January and February came, the episodes became more regular. By April they’d peaked, with 20 seizures in a single day.

Since my diagnosis this time last year, my doctors have been working not just to combat the cancer slowly growing in my head, but also to bring my epilepsy under control.

A biopsy earlier this month confirmed the tumour type. The treatment options available to prolong my life will soon become clear. By co-incidence, we now seem to have found the right cocktail and the right quantity of drugs to make the seizures go away.

For over a week – a whole nine days – I have not had one epileptic episode. Not an intense one, or a mild one. Not even a feeling that I might have one. For hours at a time, perhaps even for a whole day, I’ve forgotten I have a brain tumour at all.

Over the weekend I rode over 100 miles on my bike, including racing for the line in a couple of sprints while out with a club. Long miles or sprinting used to be a guaranteed way to bring on an episode. This weekend, the only thing that bothered me was how easily beaten I was to the line.

For months, I’ve said exasperatedly to anyone who’ll listen: If only I can get these seizures under control, if only I can make them go away, then everything will be alright. At lower times I’ve said I couldn’t even remember what good health felt like.

I do remember now.

In the long term I know all is not well. I know the seizures might come back if the tumour continues to grow. They might return if my anti-epilepsy drugs clash with any chemo or radiotherapy I may have to have before the year is out.

But like many with a terminal illness would say, right now is what really matters. Right now is what counts.

All over this little corner of Essex, by the side of big roads and small roads, there are a dozen little patches of grass, or benches, or pavements where I’ve had to leap off the bike to have a seizure.

I know each and every one of them; each place is indelibly stamped on my ill functioning brain. Previously, passing them on my bike has only reminded me of my tumour; how things would likely only get worse.

More lately, as I pass them, I give a little nod to these places. I offer my respect, in the same way Tour de France riders dip their heads when they pass where former riders have died.

I nod and then I smile for the chance I’ve been given to live, for a while at least, just about how it was before. And to ride my bike just as I used to.

4 Comments

  1. How wonderful that things are so much better for you after such a year of turmoil. I’m smiling with happiness for you and your family. Enjoy, enjoy, enjoy!

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