It seems we’re getting nowhere with the anti-convulsant drugs.
On Saturday, I headed out for my usual 30-odd mile cycle ride, and once again had my now-usual two epileptic seizures along the way.
This despite now being on a pretty high dosage of anti-convulsant drugs, the dose my doctor said he’d like to get me to when I’d asked him to give the medication everything he could.
I’m pretty sure we can up the medication yet more, but since the meds have been steadily increased since April with absolutely zero success in stopping seizures, I’m starting to think maybe I should go the other way and come off them all together.
(Of course, for all I know the drugs could be working just fine. For all I know, without them I could be having seizures every day, just from walking around the house).
Inevitably, this time of year provokes a little naval gazing about significant dates and milestones. Lots of people with serious illnesses talk and write about making it until Christmas, or wanting to see in another New Year.
But despite all that’s happened to my family during 2012, this Christmas and New Year haven’t really emerged as milestones. When I was diagnosed I’d pretty much resigned myself to being dead within months, so Christmas wasn’t even on the agenda.
Then later, when I began to understand how my brain tumour works, I realised the end of my life is likely to be a slow ebbing away, a premature ageing rather than an overnight wipeout. Even when things start to go seriously wrong, it could still be a couple of years before I’m finished off.
So what are my milestones?
It’s already been over a year since the seizures started. The first one was after a long cycle ride sometime in November last year. The anniversary of my tumour making itself known – though I didn’t know it at the time – has already been and gone.
The first real milestone for me actually has nothing to do with my illness.
In March 2011 I was knocked off my bike, then spread over the road like butter over toast while I was out with a cycling club. The accident ripped out half my elbow, sprained my shoulder and – most painfully of all – snapped the carbon fibre frame of my beautiful black and silver Cannondale.
It was my first trip to any hospital this year, and many months later I still wake up most mornings with a stiff shoulder. Somehow I’ve associated that accident, that hospital trip and that constant dull pain with the tumour that was discovered a few weeks later.
The next milestone will be the anniversary of a trip to the dentist.
I’d been having seizures on the bike for a few months, and had somehow decided it was to do with an exposed nerve in a broken tooth. Have the tooth removed, I told myself, and the seizures will stop. Because I am, of course, a fully qualified neurologist and also a dentist.
Out came the tooth but the seizures continued. ‘What was I thinking?’, I now consider, as I gently tongue-prod a gaping hole in my jaw.
I guess a big milestone will be 15 April.
That’s my daughter’s birthday and it will be a year since this whole episode really began. We’d had the usual cake and ice-cream children’s tea with a few friends at home, and after they’d left I decided to knock out a few miles on the turbo-trainer to try to work off some of the calories.
After about 15 minutes at a decent pace, a seizure hit me that was so intense I had to get off the static bike and lean against the wall for stability. My right arm flapped wildly and my neck ticked out of my control. I knew this was not tooth related. Perhaps I’d really known that all along.
The next day, I went to see my doctor.
A week later I was having an MRI scan on my head, and two weeks later came the day that changed our lives.
30 April. My doctor turning up on a Monday lunch-time and telling me I have a brain tumour. Later that week, my wife and I went to see a brain surgeon in Romford, Essex, who confirmed it and told us it is inoperable and incurable.
I suppose that 3 May milestone is the most significant one. A Thursday afternoon meeting. Being dropped off by my wife’s dad. The nervous coffee beforehand. The doctor running an hour late. The corridor computer, the only one available, showing us the white mass covering the left side of my brain. The nurse handing us leaflets and phone numbers and reassurance. The stunned bus journey home, staring out of the window.
When I pass that day this year, it ought to be a date for celebration. A first year as a survivor. A reason to crack open the Champagne and cut into a cake.
And maybe I will have a little party, just to mark its passing. I love the idea of a brain shaped cake that I can hack into with a very very sharp knife.
Yet, there’s this little niggle I just can’t shake.
In the weeks immediately following diagnosis, I managed to establish what the doctors didn’t tell me. That if I’m Mr Average Low-Grade Glioma Brain Tumour Patient, I’m probably looking at between five to eight years, from diagnosis to death.
When that anniversary passes, I may have survived a year. But it also means I have one less year to live. If I’m Mr Average, I’ll be on four to seven years, not five to eight.
I know statistics don’t work that way. But, then again, nor do milestones. It’s all tricks that we play on our minds.
Or that our minds play on us.
Thanks for joining me so far. I hope you’ll stick around. May there be many more milestones still to pass. Here’s wishing you a very good Christmas, New Year and winter break.
I think that line about the brain shaped anniversary cake might be just about the saddest thing I’ve written on these pages so far. So I’m going to actually do it, just to take the bad taste away. It’ll be my favourite type of cake and I’ll save you a piece. Look out for the photos in May.