‘Look around at how lucky you are to be alive right now…
Look at where you are, look at where you started
The fact that you’re alive is a miracle
To stay alive, that should be enough’
– Another bit off of Hamilton
No, Lin-Manuel Miranda, it’s not enough – not even close. Just like the dramatised Mr Hamilton, it seems I will never be satisfied. Of course I understand the premise – I’m lucky to be alive right now and that in itself is pretty miraculous. But here’s the key difference – I’ve lived my entire life like this and there comes a point where simply continuing to respire loses its novelty. No matter how much of a statement it is to continue directing warm breath towards the face of a bleak prognosis, or how it defies the inevitability of incurable cancer: To stay alive is not enough.
I’ve just about come round to the idea that, given the trials and tribulations of the past few months, there will be worth in celebrating my next birthday. But that’s been hard enough and the current plan is for that to be a charity concert with a big band. I need to earn my fun and I’m definitely the harshest judge of what that means. I’m aware that many would take a more sympathetic view. If you see someone in a prolonged state of pain and suffering, It’s natural to wish it away and not come back. This is a pretty common sentiment coming from plenty of well meaning people.
Perhaps I’m now supposed to wrap myself in cotton wool, put the heating on and sit around watching box sets. Maybe I should gratefully look forward to the odd visitor bearing fruit whilst forcing an uneasy smile as they regale me with tales of the outside world as I live entirely vicariously in a cocoon of ‘safety’. And we all know the likely ending of this story, even if we’d rather not consider it. It’s pretty much written in stone that, months of years hence, after a succession of humbling treatments and surgeries, the associated medics will give up and I’ll be moved to a hospice or hospital side room to enjoy more fruit, one last drink and be given the ‘really good drugs’ whilst waiting for the sweet release of death.
Don’t worry – if anyone I cared about had been through what I have, I’d probably share that mindset and also reach for the metaphorical cotton wool. I know this because I’ve been through all this from the other side and – without really thinking about it – sacrificed the entirety of my wellbeing for Holly. It didn’t matter if I had enough food, rest, sleep or enjoyable experiences of my own. All that mattered was that she was ‘comfortable’ as I saw it, which amounted to me fussing and clumsily attempting to help with all manner of small stuff, which is pretty much the only option left the helpless onlooker. It didn’t really sink in that the nurses had it covered and that Holly was capable of far more than I assumed, as demonstrated by the amount of wedding planning she persisted with right to the end.
I’ll attempt to give myself a break here by remembering that I was really young back then and absolutely no one knows how to act when a loved one is going through such an horrendous ordeal. But Holly’s attitude to life remains one of the greatest gifts I’ve ever received and, like her, I intend to defy the modest expectations placed on the average cancer patient. And I have another unexpected gift: for now, I’m more or less fine. I promise. Yes – I look well, don’t I – uh hum – that’s because I’m not putting on a brave face – I am.
It’s taking months for this to really sink in and that’s brought on some pretty strange and contradictory mental states. I’m putting that down to feeling like Schrödinger’s cancer patient: Simultaneously living and dying. Right…before you jump in to say ‘we’re all dying really, if you think about it’ … well this is different. Even if I defy the odds and last a good few years, I’ll die four decades before the average person and, in all probability, a long long time before you. The calculations are completely different. And that’s resulted in my agonising over how to spend every waking hour because each represents a far greater proportion of the time I have left than for the vast majority of people. Taking one path always means missing out on another, but it’s likely you’ll be able to revisit that fork in the road if you want – I don’t have this luxury. That’s compounded by the fact that I’m living in six week blocks from test to test with the prospect of more debilitating treatment just around the corner. So I concurrently feel well enough to imagine having a few healthy years to play with, whilst faced with the very real prospect that it may just be a few short weeks before it all kicks off again. No wonder a number of cancer charities offer free counseling!
I am lucky to be alive and sometimes that simple fact overrides everything and blissfully dominates my thoughts, especially during a carefree stroll around a sun strewn meadow. But along with my relative wellness, the relentless ambition has returned and it’s pulling me in all directions. After all, these are the good times and it would be tragic to waste them. Moreover, I can’t claim to have taken Holly’s courageous example to heart and proceed to not actually do anything.
The writing continues to go well and, in addition to a couple of confirmed projects, I’ve been approached about the speculative prospect of a book proposal. At the same time, I’m getting back into the running and completed a slow but solid 15 miles last weekend, thanks to Jon’s company and a carb loading treat from his backyard pizza oven. This is just as well, because the current thinking for this book is the narrative of a significant comeback to ultrarunning. That is reliant on a decent training window without much disruption from chemo, which of course isn’t guaranteed. But if that stays at bay, there’s an ever greater chance that I’ll be able to return to the job that feeds me. Perhaps the next scan will be kind and clear me to come back before the summer holidays. The music also keeps me busy and I’ve got a few gigs lined up including a solo one. Even when the health again goes downhill, if I can pass my fingers over a typing keyboard, I can do the same at the piano and a couple more songs are in the works. The end point of an hour long solo set feels realistic.
In short, ahhhhhhhhhhhhh! And whilst my resilient defenses remain resolute (because – well – they have to be) a few oddly shaped cracks have begun to appear. Perhaps I’m getting so used to the idea of taking opportunities that would previously have been out of reach. Whatever – having been advised that my appearance in one national newspaper might cause problems with approaching another, I’ll admit that the thought bothered me. Then I started laughing at the absurdity of this. What gives me the right to imagine I can just walk into feature writing without any experience or any idea of how the industry works? Having so pragmatically come to accept that my life is so limited, why is it suddenly more difficult to accept the same might be true of my ambition? I felt similarly upon hearing that, whilst a student group I’ve had to step back from has progressed in a national music competition, the one I’ve been able to just about keep working with has not. This is despite me having led the group that got through for years and, as recently as last September, fought successfully to keep it in existence. This thought process too is objectively ridiculous. I’ve recently received a national award for music education after all, so am not exactly in the habit of failure or producing substandard performances. Plus in this specific case, the group that didn’t get through has recently produced two objectively amazing performances and has five more in the diary for next term. It is doing well, but that one disappointing outcome has convinced me that I’m not.
Why does this bother me so? No matter what I’ve done or may go on to achieve, I will never be satisfied. I can’t and won’t rest easy. That’s pretty frustrating – a different attitude could make me so much happier. But it’s also reassuring. I repeat my previous assertion that I’m not afraid of dying, but afraid of dying without dignity. I’m still not sure exactly what this means but I know for sure that I’m going to keep going until I can’t.
So for now, you don’t need to visit me – I’m perfectly able to come to you. Please save the awkward pity and there’s no need to bring me any fruit.