The Brain Tumour Diaries
"Forty years a Neurosurgeon and I'm none the wiser as to how the brain works."
– Henry Marsh
Cycling Tips | The Beauty of Cycling (Mar '17)
Tom Scambler | Journalism Student Assignment (Sept '17)
A Pacifists Guide to the War on Cancer | Seymour Centre (Mar '18)
Aug '18 (living with a brain tumour)
Sep '18 (Ketogenic diet)
Oct '18 (exercise)
Nov '18 (medicinal cannabis)
Dec '18 (brain cancer research)
Jan '19 (memory)
Feb '19 (carer burnout)
Mar '19 (anxiety & depression)
Apr '19 (blood-brain divide)
May '19 (empathy)
Jun '19 (crowd funding)
At university I studied Economics, known, for good reason, as the dismal science. My tutor once asked the class for our definition of the subject we had enrolled in.
My Father taught me a few things, without of course, knowing that he was, in the process, teaching me at all. One of them involved my first post university job, or the attempt at landing one.
There is a place I go, a not necessarily pleasant place but it is, all the same, necessary that I go there. It’s also, ironically enough, a place of solace.
When we are young our spirit is to make our own way, to turn our backs on whatever it is that society entreats of us, to collectively thumb our nose and to carry rebellion as a badge of honour, or at least is was back in the day.
The doctor had called about some news he needed to discuss with her, it was better if she came in he said, better that the news be delivered face to face. A cold shiver went down her spine, she didn’t have the courage to ask for a straight answer…
It commanded my attention searing its way through my chest, its steady rhythm building to an ominous crescendo, the reverberation ricocheting between my ears as it clutched my throat in a vice like grip.
It’s been two years and I haven’t been able to write. A combination of factors has contributed to this creative inertia, summarised, in general terms, by the existence and subsequent evacuation of a brain tumour and by the summary afflictions that comprise recovery of same.
I gave a friend a lift home from our support group meeting. He doesn’t drive, recovering as he is from his brain surgery. It was a good opportunity to catch up with him, hear news of treatment, of recovery progress, to share the odd anecdote, and complain about the traffic.
There are times, when viewed in the rear view mirror, when those moments of temporary crisis are upon us, when thought strings are tangled, when things spiral, when all we want is some small semblance of control.
We live in a political world and as much as we might like to turn a blind eye to that fact, we can’t avoid it. You may wonder then, what has led me down this rabbit hole and enquire as to what politics has to do with having a brain tumour.
It’s a touchy subject war, and that one day of the year when we’re confronted with the futility of it has again rolled around. I should also add, that, tenuous as it may seem, I am making a link to my own brain tumour journey.
You might be wondering who I’m quoting here. A clergyman perhaps? Or clergywoman? if you can find one. A nurse? An artist?
“Sometimes you’re better off not knowing,” I said to a good friend as we sat outside sipping coffee. He nodded in tacit agreement, without completely understanding what I was trying to say.
Things are somewhat difficult just at present. I stumble, almost falling backwards and all I’m doing is making lunch, a toasted sandwich. It’s the price I’m paying for having the brain tumour removed and the subsequent and ongoing recovery of same.
Half-wracked prejudice leaped forth
“Rip down all hate,” I screamed
Lies that life is black and white
Spoke from my skull. I dreamed
Romantic facts of musketeers
Foundationed deep, somehow
Ah, but I was so much older then
I’m younger than that now
Before I go on, I should preface my comments by saying that my intended audience for this missive is not the brain tumour community, they may read this and remark “tell me something I don’t already know”. It’s for anyone who may know a brain tumour survivor, or has met one, and who wonders what the fuss is about.
Clive James, in answering a question about his writing life, a question about the writing process, answered thus, “I get up in the morning, make myself a cup of coffee, walk up the stairs to my office, stare out the window and do what all great writers must do…”
For most of us, dare I say all of us, our lives are filled with the mundane. I’m sorry to break it to you this way, it may come as a shock. With the profound on the other hand, where an insight of emotional depth and intensity is revealed, we often, as individuals, as a society, flick pass it and shake our heads in wonder
Following the 15 hour surgery on my brain 12 months ago, the whole left side of my body was left paralysed. There is still some way to go. My left hand still experiences constant pins & needles. It has about half of its required strength and dexterity. The neuro pathways, the synapse, from the brain to the hand still has obstacles.
A short video montage, mainly walking, of progress since my surgery.
Appearances can be deceptive, as they are with most people. On the surface I appear to be quite normal, a functioning human being doing what functioning human beings do. “You’re looking good” is what people say.
An article written for the May 2017 Brain Tumour Alliance Australia magazine.
Six months on from surgery and my life is still a struggle. I still feel useless, although I do try and make myself useful. I have perhaps 40% use of my left arm, gripping and holding things is the main problem, I still have double vision in my right eye and I am unstable on my feet.
This week, no fewer than 8 people have said to me, “it’s been a really tough year”, and then gone onto say, “and I know it’s been an especially difficult one for you”.
I didn’t think I’d be so physically incapacitated. Or put another way, sometimes it’s better not to have full knowledge of the consequences of major surgery, it can lead to pre and post-operative despondency.
I rode my bike for half an hour this morning. Previously, that is, pre-surgery, a half hour bike ride would not have registered at all on Katrina’s radar, but today she was ecstatic because my current normal makes thirty minutes of intense exercise monumental.
There is no guide book for surviving a brain tumour. I have no idea how long it might take me to get back to a normal life, if there is one.