Yesterday I received my latest MRI results and yet again I have come away with the relative all clear. There has been no significant growth in my brain tumour, no significant enhancement in the abnormal cells within.
Since my first MRI back in April 2012 – has it really been that long? – the tumour seems to have grown only slightly at its crown. My neurologist has assured me the growth is within what would be expected from my type of tumour.
The only significant visible change appears to be new white patches where the brain tissue was scarred from the biopsy nearly a year ago.
So it feels like there’s nothing to say. I’m Mr Average Low Grade Glioma Patient.
So now, part of me wants me to forget everything about the tumour. To put it completely behind me and deal with it only when things do turn bad.
Part of me wants to pretend it’s not there, that I didn’t even know. I wish I’d never said anything to anyone, that it wasn’t important enough to share.
Even on these pages, I’ve resisted the temptation – unlike before – to reveal that my results day was on the horizon. After four or five repetitions of next to nothing, I didn’t want people to feel obliged to wish me luck, to then read the inevitable good news blog I’d post afterwards.
I’ve made myself the low grade guy, but I can’t help but feel I’ve become boring. And I want to be boring. I want to ride my bike and not think about, and talk about, and write about brain tumours for a while.
Last night, I made a list of the bike races I want to enter this year.
But the truth is, I was waiting for yesterday’s results to make that list. I needed to get the (relative) all clear before I signed up. And as I made my list, I was reminded I can only race in those that are close to home because I cannot drive.
Even in my attempt to escape, the tumour will always be there.
I face contradicting feelings. The desire to forget and ignore, but then the knowledge that I’ve started things I need to finish. This blog, my Living Low Grade book, the knowledge and experience I’ve accumulated and can share.
I know there are readers who look to what I write for support, for revelation, for reassurance, perhaps even for inspiration. I know I have particular skills – writing, communicating, public speaking – that might be helpful for others. I have lots to contribute and I’ve made my bed.
Even as Mr Average there are perhaps further things to say.
As my children grow up and need to be ferried to this club or that, to swimming lessons and birthday parties, my inability to drive – living in the isolated country spot we once craved – has become stifling. A radical change in our lives is no longer a choice. Maybe others have faced the same.
In another attempt to control my regular waxing and waning cycle of seizures, I’ve been told to double my anti-epilepsy medication. I don’t react well when the dose is increased, so the next 20 weeks will not be much fun. Maybe writing about that may be helpful for others too.
When I came out of my results meeting yesterday, it was with a very strange mixture of emotions.
First was elation. Nothing has changed. Go away and live your life.
But then there was an unfathomable sadness, a strange boredom that everything is the same. The roller coaster I advertised when I started writing is puttering along only at an unexciting speed.
And there’s guilt. Guilt that I continue to be one of the lucky ones. That I’m not that other guy in the waiting room, the one in the electric wheelchair and the touch screen he needs to makes his life liveable, the oxygen tank helping keep him afloat.
Some readers may be horrified by these words. I know many are selfish thoughts. I should consider myself lucky, be glad that all is well and will continue to be long into the future.
But when I started writing, I promised it would be the truth. Perhaps others have been, are or will be going through similar emotions. Perhaps other patients think similar unspoken thoughts of elation, followed by sadness and guilt.
If so, maybe I am keeping my pledge to write about every aspect of having an incurable brain tumour. Of permanently, inevitably – but not quite yet – facing the end.
Even if what I write now isn’t what I expected to be writing nearly two years after it all began.