Watching the journey

When I’ve finished writing this, my next words will be for my neurologist.

Something has definitely changed up there, and someone needs to take a look inside. My next MRI isn’t for another three months. I don’t want to wait that long.

Yesterday started, like most Saturdays do, with my heading into the morning on my bike. A decent ride after breakfast but a lonely one since, for now, I no longer ride with a group.

It was a cold one, the first of the season demanding ‘longs’ and full fingered gloves. But it was bright, a morning where you can see mist rising off the fields and watch tiny water droplets collecting on your gloves as you ride through patches still lingering in dips.

I’ve been off the bike for a fortnight: weather, illness and seizures. So I thought I’d make the most of the crisp day and pedal around some of the local routes that always make me smile.

The sweeping bend in Copford, with its rotting tithe barns and the giant bee made with old tyres painted black and yellow.

The charming drop into the Colne Valley, and under the viaduct at Chappel taking trains out of Essex, over the railway museum, and on into Suffolk.

Then the steady climb to Mount Bures and down again to Stoke by Nayland, all exposed timber houses and perfectly thatched roofs.

And finally back up over the hump at Cooks Hill to Langham.¬†On sunny days like this, it’s either Cooks Hill or Carters Hill. It has to be.

And at just under 40 miles, passing the house just out of Ardleigh with its bright red London bus and traditional telephone box in the front garden, I have another seizure.

The fourth in five bike rides, and more intense than any of them. The usual wave of dizziness and disorientation, with long lost memories resurfacing, weakness shooting down my right side. But just as it was clearing, just as I felt I able to speak again, the wave came all over again.

Something different, something new. Time for a look?

Until now my MRI scans have been based at Colchester. The first in April when they discovered the tumour in the first place. The second in July when the oncologist told me the tumour was stable. They told me to come back in six months.

My care is now with my neurologist in London, and it is him I want to ask if another three months might be too long to wait.

When I was sent away with a six month reprieve, I felt relieved and reassured. Half a year must be good news; they don’t expect change. I was so relieved, I walked away in a daze.

Now I regret not asking for a shorter gap. Now three months more feels way too long. Now even a month could be too much to bear.

I want, I need, to know if the changes I’m feeling can be seen on a scan: enlargement, expansion, enhancement.

I want to ask, but maybe I really want my neurologist to say no.

Maybe I want him to tell me my body has got too comfortable with my anti-convulsant medication. That the dose needs to be increased, and he’ll see me in February. As planned.

Because if he says yes, then the worry begins. The slow tick-tock until the next click-click of the MRI machine. The week long intermission as we wait for results to come in. The painful waiting room hour, shared with men (once fit like me) hobbling with walking sticks, their hair missing in clumps.

And if the scan shows change, then everything changes. A countdown begins.

Decisions: wait longer or a biopsy? Start treatment, wait, or refuse? Start making plans. Finally sign those forms. Something else.

I know that knowing won’t make a difference. Seeing the tumour won’t shrink it. The journey of my condition will take its course, with spectators or not.

Yet spectate, I must.

*

There’s so much I regret from that Colchester hospital meeting about my second scan. I’ve not felt able to write about it here because of my innate sympathy with the NHS, but also because how unnecessarily difficult and unsatisfactory it was has only slowly taken shape in the months that followed. The time is nearly ripe to share. Nearly…

3 Comments

  1. Oh Gid, we are so sorry to hear about what happened this weekend. And perhaps more importantly the worry this is causing. You are all in our thoughts. I was texting Sarah yesterday but didn’t know about the most recent episode. You are very brave to share what’s happening. As ever if we can do anything you know where we are. With love Rich, Bet and the girls xx

    1. Thanks Richard, your comments and thoughts are always welcome. Sometimes my blog probably makes everything sound worse than it really is. I guess that’s what makes it interesting, but the rest of life plods on as normal. Thanks again, and see you all soon.

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