September, January, somewhere after Easter eggs and Sunday afternoons are all, for me, synonymous with feelings of mild depression, anxiety and dread. The start of school means the end of freedom.
Packing Felix off to college, Tess to her last first day of high school, and Emma to her first day of high school has worn me out. I dither around all day achieving little other than walking the dog. But I find myself clearer headed today than I have been for weeks, and I think it’s because that dreaded first day is over, and so far – touch every bit of carbon you can – they seem OK.
The start of school is now, for me, the beginning of a new effort to reshape my life as we know it. Only now – ten days since I last saw my doctor – am I able to process what I learnt at that meeting.
The headlines are good. My MRI showed further shrinkage of the cavity left when Dr Oppenheim scooped out the tumor, and no sign of recurrence.
I asked Dr Iwamoto what lies ahead beyond a two month horizon (ie my current timetable, as I have MRIs every other month). He’s always been clear that while the immunotherapy I take (nivolumab) is the strongest agent I’ve got working for me, it will ‘in the end’ work better in tandem with another agent. This could be a viral gene therapy. (Needless to say, these are all views based on my individual case and my particular TEF).
These re-designed gene virus therapies are so clever and so complex that I can’t begin to describe them. OK, I’ll have a go. Here’s one Dr Iwamoto is particularly interested in for me. Tocagen is embarking on a Phase 2-3 trial which, if these confirm the early Phase 1 results, could prove pivotal. Tocagen produces an anti-cancer drug inside the tumor itself, allowing it to selectively destroy cancer cells while simultaneously activating the immune system. What’s more, this anti-cancer drug is also partial to killing immunosuppressive cells, further powering up the General Morris Army. It will take around two years before the trial concludes. Tick bloody tock.
This moves me onto a new level of hope.
We all have to have hope, right? Even when everything’s all fine and dandy, hope rears its head and asks us to shift a gear. It dangles something in front of us to motivate us to get up and go grab a better something.
Having a disease without a cure doesn’t sit easily with my four-letter friend. And yet having and harnessing hope is crucial to overcoming the adversary of adversaries – TEF. Remember our friend Stephen Jay Gould making the case for positive thinking?
But hope works for people in different ways… partly, I think, because people access it differently. I’ve been thinking about different people I’ve known who’ve been faced with difficult diagnoses. One was my uncle Bill Foreman, a New Zealander who somehow ended up running Sully Hospital in South Wales. Along the way, and after becoming a doctor, he enlisted in the New Zealand Medical Corps only to be taken prisoner of war. He volunteered to be transferred to a camp where Russian prisoners were dying from typhus. He stayed for two years, despite contracting the disease himself.
Bill developed non-Hodgkin’s lymphoma in the early ‘70s. I remember him and Pam coming to stay with us in Greenwich, not long before he died. He’d lost a lot of weight, and his skin was a little pallid. But he had the sort of stature, sense of wisdom and gentleness I associate with those very few men like Atticus Finch. Anyhow – yes, maybe Alabama to New Zealand to Poland and South Wales is a bit of a stretch – he was a really wonderful man.
I do remember Bill saying that patients always had to have hope. That hope was part of the treatment plan.
For me, hope is about staring the enemy in the face, inviting all the shitty statistics, heartbreaking stories and beyond cruel medical and human failures associated with brain cancer into my innermost self. Let me know what I’m dealing with, because then the hope that I know I can tailor-create will be better informed, better capable of being realized, more refined, more intelligent, strategic, smart – gazillions of adjectives to describe what is for me an absolutely critical piece of General Morris’ armory.
Or as my dear brother-in-law Pete puts it, I’m using my fears as a source of energy. Maybe, as he suggests, this is moving into a Buddhist sphere, where hope is seen as an antidote to fear. Who knows (or maybe one of you readers does?). It’s what I find my mind doing.
My MRI and meeting with my Doctor opened a door in my poor beleaguered brain to let a bit of hope back in. I might regret writing this, but I’m daring to think beyond the next MRI in two months’ time.