When all this is over, I’m going to grow my hair again. When all this is over, we’ll go on a massive holiday, somewhere with a pool and warm sunshine every day.
When all this is over I’ll do that bike maintenance course. I might even set up in business, fix up a few bikes for the locals and see where it goes. When all this is over, I’ll build up my old business again: writing for charities, helping them to communicate.
When all this is over, I’ll go back to volunteering at my children’s school. I’ll start doing long rides again. Long, selfish cycles into the distance, back pockets full of homemade flapjacks. When all this is over I’ll race my bike again. Sure, I won’t worry the judges. But at least I’ll be on the starting line.
When all this is over I’ll write a novel. I’ll spend less time asleep. We’ll take the kids to… everywhere. We’ll go on long bike rides as a family, the new one in a baby seat on the back. We’ll move to Spain for the summer. We’ll go to Colombia. When all this is over, I’ll get back into learning Spanish.
When all this is over we’ll get the house redecorated. Maybe sell up. Maybe stay put. When all this is over we’ll do something. Anything. Something different from all this.
But this is never going to be over. I don’t even know what this is. The chemo? The seizures? The brain tumour? The MRI scans?
I have three children, ranging from 10 months to eight years. None of them know a time when I wasn’t ill. None of them will ever remember a time when their Dad’s health was normal. To them, this is normal: the drugs, the seizures, the hospital visits, the chemotherapy, the dent in my head, the blank patches when I allow my hair to grow a few millimeters.
I wrote a book a few years ago about my particular type of brain tumour. More than 20 other patients with the same or similar tumours generously contributed their stories.
Since that time, some of them have died. Others are profoundly ill. Others, like me, are plodding along in their lives which will never be the same.
That this is never going to be over doesn’t make me sad particularly. I’m not yet scared. It’s just different. It’s been so long, I can’t quite remember what this is different to.
It is the easiest thing in the world to brush yourself down, tell yourself: I’ll just live day-by-day. Make the most of now. Live for the moment. Take things as they come.
That’s the ideal. The platitude you tell yourself, just as frequently as others say it to you. And it’s right. Up to a point.
Then you get the email out of the blue to say another brain tumour patient you know has passed away. Or another news story appears about a celebrity dying from the disease. Or a local newspaper features a kid whose parents are desperately seeking ‘potentially life saving experimental treatment’ abroad.
In those moments it’s not quite so easy to live for now; nor to look to a point when all this is over.
But life is ever changing, whether you have a chronic disease or not. Two years ago, I would not have countenanced the thought of another child. Now it seems like the most natural, lucky and most profoundly right decision we could have made.
I’m now approaching the end of cycle two of my chemotherapy. My doctor gave me a slightly lower dose of one of the three chemo drugs this time. We’re hoping that by the 22nd November my blood count will have recovered enough to begin chemo cycle three. I suspect it won’t, but already I’m used to the unexpected. Chemo is normal to me now, the side effects just another this to be over with, sometime in the future. I feel good. Ready to plan for the future, only…
After chemo three there will be an MRI scan, another six-pence on which our lives could turn. Most probably it won’t. The answer will be fuzzy, more wait and see. Another target, another this.
So, how to respond? Living for today is hard to do. Waiting for this to be over is just as tough, especially with the not-so-secret knowledge that this will never really – really, really – be over.
I have an idea. We all have our skills. As keen a cyclist as I’d like to call myself, mine have really centred around the written word, public speaking, getting messages across.
Before this year, I’d done a fair amount with brain tumour charities to write about and support their work, as well as to support other patients with information in an easy to access way. This year, with its cancer treatment, has prevented me playing that role as well as I’d have liked to.
But ideas have been fermenting. I’ve had so many good responses to this blog, and to my low grade brain tumour book, that I hope there is a lot more I can do to support brain tumour patients and their families.
It’s just an idea right now, and I’m leaving it to brew some more. But when I’m ready, I’d like to get started.
Just as soon as all this is over.