At lunchtime, I made a beeline for his table.
In a characterless hotel conference room full of brain tumour experts, clinicians, nurses, charities, patients and carers, his words – matter of fact, sensible, sensitive – had struck the biggest chord with me.
He had plenty of experience to speak from. George’s wife Iris had been diagnosed with a slow growing tumour in the early 80s, back when – as George indicated by waving his fork around the conference room – all this, these charity support and information days, didn’t exist.
Iris had had an epileptic fit one day, had been diagnosed with a slow growing tumour, and had essentially been told to go home. With the support of their families, the couple had come to terms, accepted and then continued to live with the uncertainty. Their kids were just teenagers when it all happened. Now they were academics, living all over the world.
You just have to get on with it, said George. You go to some very dark places, especially us carers, he said leaning in to my wife, but it helps somehow to have others around you. Others who just know what it’s like, who just get it. Don’t ask me why, it just does.
And it did.
George was in his 70s, a full twice my age. Yet for all the doctors and counsellors, nurses and charity representatives I’ve seen in the last year, it was George’s approach that resonated with me the most.
He got it because he knew it. He’d lived with it for decades. Right up close.
He didn’t seem crushed by his wife’s diagnosis, over 30 years of watching, waiting, operations, scans, treatments. Consecutively, Iris had become three different people since she’d been diagnosed. He’d had to get her know her all over again each time. Yet he’d grown philosophical and determined, not dejected or depressed.
His grandfather’s generation had to put up with terrible squalor, war, poor hygiene, terrible medicine. Look at us, said George. Good middle class people sitting in a hotel over lunch, talking about brain tumours. We’re in our 70s. Our folks would have loved to have lived to that age.
Look, he said leaning in again to my wife and I, we’re all of us climbing this mountain. It’s bloody hard work, and it takes a lot of energy, and do you know what, sometimes you slip and fall back down a few meters.
That’s when this lot – the waving fork again – are here: they put you back on your feet, give you a sip of water, remind you to eat, and then they give you a shove back up the mountain again. You need them.
But only you can do the climbing. Only you know how hard it is.
Iris didn’t speak much during lunch. She finds speaking difficult, her cognition is slow and understanding patchy. But she smiled and nodded along to her husband’s wise words. I’m sure she’d heard them many times before. Then she listened to us, and gave us sympathetic murmurs as we told our own story.
It wasn’t Iris’ 30 years of post-diagnosis life that moved me most that lunch time. It was her dignity and acceptance.
It was the way she showed off her beautifully painted nails, done at the hospice we both – despite our age difference – have found ourselves attending. It’s the love and companionship shared with her husband. The getting on with it as a couple. The reminder that all this is what a partnership is about: dealing with together whatever life throws at us. A flat car battery, a burglary, the birth of a child, a cancer diagnosis.
You just get on with it, repeated George. I wanted to hold my wife’s hand.
And then we didn’t talk about brain tumours at all. We talked about holidays, and children, and engineering, and cycling, and work, and Essex.
And this couple laughed at us, a man and wife just about young enough to be their grandchildren, as we sneaked back to the buffet for an extra bowl of profiteroles and cream.
(George and Iris aren’t the couple’s real names.)
I am unusually euphoric of late because I’ve not had an epileptic seizure for nearly a week.
In mid-January I was having an average of three or four every 24 hours, sometimes way more. Sleep was becoming difficult, cycling impossible, and even a trip to town with my little boy was something I began to feel nervous about attempting.
No-one’s sure whether this spike in seizures is just the natural ebb and flow of epilepsy, or an indication of tumour growth. I’m not due another MRI until late February, so we won’t have a clearer idea for a good month yet.
In the meantime, my neurologist has delivered me a little white pill that is just as wondrous and powerful as it sounds: Clobazam!
These little things have taken away my seizures almost completely (I did have a few twinges this morning) and have restored hope that – with some chemical assistance of the non-Lance Armstrong variety – I should be able to get back on my bike pretty soon. Weather permitting, I’ll be out for a short test-spin tomorrow.
The key problem with Clobazam is that it’s highly toxic and pretty addictive. Like it or not, my time on it will be short lived; probably no-longer than four weeks. It’s really an anxiety drug (which may go some way towards explaining my general euphoria), so only meant for short-term use. And anyway, it’s effectiveness with epilepsy wears off the longer you take it.
But I hope – at least if the February MRI shows only very limited growth – it’s effectiveness in curbing my seizures will give my neurologist a clue about what drug might just work for me longer term.
I’m learning this condition is all about baby steps. And in the last week, I feel like I’ve taken a good few in the right direction. Or maybe that’s just the drugs talking.