Last year didn’t end quite as hoped. I had two seizures on 31st December, one at 5.45 in the morning while still asleep, and another while serving a celebratory tea to the in-laws in the evening.
Neither were exercise related, my first non-exertion seizures. They were followed by a day or so of feeling pretty crappy, headachy and nauseous.
After plenty of sleep, I’m feeling a lot better now. And perhaps a tiny bit more optimistic about the year than I was 24 hours ago.
Let’s wipe the slate clean and start 2013 over, shall we?
We’ll start by summarising my current status: I have an incurable, inoperable brain tumour which doctors believe is a low-grade glioma. It will eventually be fatal, either through pressing on other parts of my brain as it grows, or through turning into a malignant cancer. OK, that’s pretty bad but I’m assured it could be 10 years before it happens (my reading of the science suggests five to eight).
The worst physical outcome of the tumour right now is that I get mild epileptic seizures down my right hand side. Until the day before yesterday, they’d only ever occurred while I was cycling or running. That’s not life threatening, but they do make cycling with a group pretty difficult. On Monday I had my first non-exercise related seizures. I’ve been taking medication to try to bring the seizures under control, but so far they appear to have had zero effect.
Apart from some morning headaches, a little nausea and feeling a bit fed up from time to time, I’m in pretty good health and I haven’t given up the bike just yet.
What kinds of hopes for 2013 might someone in my position have?
Here’s a few bicycle and brain tumour not-quite-resolutions I’ve come up with:
Get back on the bike… properly
The epilepsy has made me reluctant to put in long distances (knowing I’m more than likely to have a seizure), and has stopped me cycling with a group. Cycling is a pretty big part of my life, and I’m not ready to get out of the saddle just yet. One way or another, I’m going to find a way to stay out on two wheels for more than 30 miles or so. Even if it means always riding at the back of a group, I will be out on the road as soon as I can this year. A big part of that will be to get my drugs right.
Get my drugs right
I’ve been up, up, upping my dosage of Keppra for nine months now. Far from preventing seizures, I’ve only been having more of them. I think it’s finally time to admit that the drug isn’t working for me and to try something else. There are dozens of anti-convulsants out there. I shall tackle my neurologist – again – on this when I meet him in February.
Cycle some epic miles
The highlights of my cycling life last year were when I cycled 135 miles to Norwich, and when I cycled 117 miles to Leicestershire. Though my trips to watch the Tour de France, the race training I did and the regular Saturday club runs with VC Revolution deserve at least honourable mentions. This year, I’m not going to be able to race. But I will be planning some epic rides. Come seizures if you like, I’ll just going to climb right back on and keep on pedalling.
Get the death admin done
Yea, sorry. Not a good one to start the New Year with, but there are a few things I just have to get done. Truth is, any one of us could drop any day, but my chances are higher than most. A little growth in the wrong direction, and that’s my number. So, I’m going to get my will finalised, I’m going to write my Advance Decision (which tells doctors when to switch off the life-glug machine), I’m going to cancel my pension (chances of reaching 65 are zero), and I’m going to make an epic spreadsheet listing some need-to-know info like my bank accounts, where the treasure chest is buried and what my premium bond numbers are (I don’t actually have any, I don’t think).
Don’t live MRI to MRI
My MRI scans are big deals, because they tell me whether the tumour is growing or not. But I can’t live my life by postponing plans until ‘after the next scan’. I ended up doing that last time, and felt no better for the experience. February’s MRI is just an appointment. Something I have to do. If it’s bad, I’ll have to deal with it. Otherwise, it’s just a diary date. I’m going to need all your help to keep this non-resolution. It’s my toughest one.
Come out of hiding
I’ve spent most of 2012 squirrelled away in my little bungalow in deepest Essex. I’ve failed to return phone calls and texts, left emails languishing in my inbox, made excuses to avoid social occasions, and generally just kept a low profile. Essentially, I’ve been a bad friend. Sorry. This year I’ll be picking up the phone. My disabled person’s railcard will get so much use the (far fatter than now) picture of me will get worn off the front.
Remember to write
I started this blog as part-therapy, part-exercising my writing muscles and part-help for others. I hope I’ve started to achieve those aims, and I’ve certainly got a lot out of doing it. I wrote my new book in three months (part-time) and this Friday I’ll begin typing the first words of my new one. Last year, I rediscovered that I love to write and that – with a favourable wind – I’m not too bad at it. So this year, I’m going to write some more.
Being given a long-term terminal diagnosis messes with your head. For my sake, for that of my wife, and for my children, and because it might just help, I’ll start to see a counsellor. I’ve been quite philosophical about the whole brain tumour thing so far, but I want to make sure it doesn’t creep up on my mental health when I least expect it. I see it as good mental maintenance.
Value my kids for now
We all too often find ourselves wishing the ‘terrible twos’ were over, that Christmas was through so we can send them back to school, that they’ll grow up a bit so are easier to handle. I guess I’m unlikely to be seeing my children grow into teenagers, let alone adults. Unable to face thinking about what they’ll be like in 10 years time, I’ll put all my effort into loving and appreciating them right now, exactly for the age and character they are, not for what they’ll become.
Be a nicer guy
I was short tempered and intolerant in 2012. I stormed into my daughter’s non-religious school to demand why they said prayers at lunch time. I got too impatient with my wife’s driving. I got petulant with my accountants. I shouted at the radio far too much. I read the Daily Mail just to punish myself. I sneered at those with different ideas and priorities to me. This year, I’ll try to remember that having a brain tumour doesn’t give me the right to be a dick.
Try not to die
Perhaps I’ve been too philosophical about all this. Sometimes the novelty of my diagnosis has overshadowed its seriousness. Perhaps I’ve put on too brave a face: whatever will be, will be; I’m OK, it’s just the way the cookie crumbles. The seizures in the last few days have snapped me out of it: this is real, not some entertaining anecdote that will make good blog copy. The truth is, I’m not OK with all this. I’m pretty shocked, actually. And scared. And angry. And I do want to fight it, whatever ‘fighting it’ means. I’m not afraid of the death, but I am afraid of the dying. And afraid for my wife and children about what comes after. So, I’ll try not to die in 2013. Spending the year cycling and writing will be far more fun.