Now, please don’t get me wrong.
I’m absolutely delighted with my latest biopsy results, which I received on Thursday.
I spent nearly two hours waiting to be told by an oncologist about the genetic markers my biopsy had revealed and what, if anything, we were going to do next.
She told me my tumour does have the IP/19q deletion that we’d hoped for.
It means any radiotherapy and chemo I have is likely to be more successful at attacking the cancer. It just about doubles the life expectancy for oligodendroglioma patients, compared with those who don’t have it. I also have the IDH1 genetic marker, which is also indicative of a longer life expectancy.
The treatment they’ve got planned for me doesn’t sound much fun. Six weeks of daily radiotherapy, followed by six cycles of six-week chemotherapy using a combination of pretty rough drugs. In the meeting I was assured the side effects wouldn’t be too bad, but the treatment information I took away with me seemed thicker than such optimism warranted.
But that’s for another day. My oncologist concurred that we shouldn’t rush to treatment any time soon. We agreed what I’d hoped for: that I’d have another MRI scan in August, and when I meet with my neurologist in September, we’ll see if the tumour has grown or is taking up more blood.
Only then will we decide whether to twist (and go for treatment) or stick (and wait for another MRI, in another three or four months).
All in all then, pretty amazing news.
But with every high comes a low. I’ve received the best news so far in this whole journey, for which I am duly grateful and relieved, but I’ve also been given another wait-and-see appointment to interrupt my future.
I’d rather be in this position than nearing the end of my life, but yet another results day to look forward to reminds me about the lack of direction in my life just now.
After diagnosis, I wound down my old business doing copywriting for charities. It felt time. I’d been doing it for nearly 10 years. I didn’t know what was on the horizon, so I wanted to turn my attention to other things.
Back then, I wasn’t sure I’d survive a year or two. I wanted to prioritise being with my wife, children and friends. And to finally scratch that niggling itch of writing a book about equal parenting, before I ran out of time to do it.
By September I’d started scratching in earnest and the book was finally published last month. It’s doing OK, but it’s pretty clear that I’m no JK Rowling. The likelihood of my making a living from writing niche non-fiction polemics seems pretty slim, however much I’d like to.
And anyway, what if I started another book, then at that September meeting I’m told I have to go into treatment and…
Or I could launch a new venture: the much dreamed of coffee shop we’d all like to own, the freelance writing career reborn, even going back to charity copywriting, or maybe something else entirely.
Still, there will always be that September meeting. Or the next one. Or the next one after that.
And then I feel down because I ought to be happy, because this time last year I thought I was going to die, and now it seems I’m not going to die soon, yet I can’t shake this melancholy feeling, because I don’t quite know who I am anymore.
It’s not the earning money that’s the problem. It’s that I’m not quite sure what I’m for.
I guess cancer does that to you.
I pedal out the miles, perhaps because I think that somewhere down the road I’ll discover what I’m supposed to be doing. Anyway it’s better than staring at a blank screen, watching that blinking cursor as if I’ll find the answer there. At least I stay fit this way.
And, yes, I know I’m lucky.
I know I’m lucky to be alive, compared with most other brain tumour patients. I know I’m lucky not to have to desperately find a job, like many cancer patients and cancer survivors do, because I do have some money that will keep me for a while longer.
I know the answer is there.
Just as soon as I’ve finished feeling sorry for myself, I’ll go out and grab an opportunity. Or I’ll think up some new project, and that new project will become that new itch that I just have to scratch. And all of a sudden that next bloody hospital meeting, and the one after that, and the one after that, won’t matter, because I’ve got something else filling my head.
I hope I don’t sound insensitive. Over the last year I’ve experienced a certain novelty to being a cancer patient. It’s been new, even exciting. It’s been worrying at times, but it’s been something that’s taken all my attention and energy. Understanding it, dealing with it, and being with my family and loved ones, became everything that mattered.
It was all consuming, so my life direction wasn’t important.
With a longer term condition, that novelty wears off. That intensive demand for my energy and my attention has been replaced.
It feels like it’s been replaced by a kind of waiting that can sometimes stop you getting on with the life you do have left.