There have been various ways in which I’ve come to terms with what my life has now become. There are some clear signs of deterioration. Observe me attempting to walk and talk at the same time and you’ll likely see me getting out of breath. And let alone walking up a hill or breaking into a trot. Not very long ago, the concept of ‘endurance’ centred around maintaining some kind of athletic heart rate for an unspecified amount of time. How much of that ‘comfortably uncomfortable’ feeling could I tolerate? And once that became easy to maintain, could I keep going all day?
I spent a lot of last summer (2024) wondering if it would be my last healthy one, in which I would be able to continue in the lifestyle to which I had become accustomed. Well…I suppose I have my answer now. After spending 60 days traipsing around the country at an average of 20 miles per day and over a year older, as far as my body is concerned, I’m a completely different person. A lot of this is to be expected, what with the terminal diagnosis and prognosis that doesn’t necessarily extend to 2026, it’s a bit much to expect myself to keep on going like everyone else at an exhaustive pace. With cancer effects causing the basic life sustaining acts of eating, sleeping and breathing to be difficult, simply getting through each day is now a challenge. And that’s without the further complications of chemotherapy, which is continuing to make everything that bit harder.
So yes – that was my last healthy summer and yes – I am infinitely grateful I took my body out for that one last big adventure. It is fair to say that it will be the last I will take of any notable proportion. No longer will I make people feel lazy compared to me, but simply thankful that they are not me.
I’m fine with this. At time of writing, I’m really not the best person to be, anyway. It’s often felt, and proved to be again, that chemo doses are made to last right until the beginning of the next cycle, so that once you’re feeling relatively human, it’s time for the next load of intravenous poison. Up until last weekend, it was definitely a struggle with lots of annoying and niggling little side effects that result in me having to restrict myself to a diet of bland, cold and tepid food and drink. That’s when I’m not feeling nauseous. I suppose I should consider myself lucky that I haven’t lost any hair recently and that with some careful energy management, I’m able to achieve at least some quality of life.
I don’t want to go over the top here because the term ‘quality of life’ is utterly relative and I wouldn’t be surprised if I find myself re-reading these very words and wishing, for example to have full use of my legs. But at the same time, my quality of life isn’t getting any better and it’s quite frustrating. Rather than having a limitless supply of energy, I’m now good for, perhaps, one significant activity per week, for which I’ll have to spend a day either side recovering from. And with the addition of chemo…who knows? I certainly don’t.
But I know that with a little help from my friends, I get by. This has taken a few forms recently, including pre-paid taxis into London provided by more than one charitable organisation. The Nathaniel of September or so wouldn’t have considered this remotely necessary but October’s version was infinitely grateful to be greeted by a driver at 7am! So, I’ve been able to get out of the house for some pretty spectacular reasons, including observing committee sessions in Parliament and meeting a few fellow assisted dying campaigners. Otherwise, long-partnered charity Macmillan Cancer Support seem to be providing most of my social life with visits to such fancy locations as the Old Bailey (no – I haven’t done anything wrong!) Valentines Mansion, Parliament and…Birmingham. More on the last of those in the next blog.
I’ve been just as grateful for the visits from friends who’ve taken it upon themselves to drag me out of the house for short walks, cake and tepid coffee. A few weeks ago, I would have thought absolutely nothing of taking on the hill that delivers me to the beauty of Hainault Forest Country Park. Now I need either a lift or a good few hours.
I write this having emerged from another event-less half-hour long injection of IV chemo poison and the proud owner of no less than ten days worth of chemo poison tablets. I’m hoping the reduced dose will help with my breathing as these tablets can produce excess saliva. This doesn’t explain why I felt similarly when I experienced a pulmonary embolism earlier this year, but at least we’re trying.
Trying at what?
Months, maybe years ago now, I remember conducting a thought experiment. At what point would it no longer be worth being treated? I don’t mean this in a ‘giving up’ sense but completely guided by the pragmatism that is quite strong in me. Would there be a particular ratio of bad times to good? Back when I was enduring three months of chemo to give me six or more without, the choice was (and still would be) unthinkably simple. But what if that ratio edged towards 1:1? What if even that wasn’t guaranteed? What if it would take a lot of the ‘break’ to feel ok again? What if this chemo doesn’t work and there is no break, straight on to the last line of treatment or nothing?
Well…that’s exactly where I am now and…guess what…1:1 it is. Because as with many choices we have to make in life, it’s pretty much impossible to do so until you get there. Be that treatment, no treatment, exchanging one kind of pain for another e.g. surgery for radiotherapy etc.
And what about those most unglamorous choices that will be coming up at some point? When to accept the offer of a hospital bed at home and where to put it? When to admit I can’t look after myself well enough to not need regular carer visits? How far to eke out the limits of what my body can do and finally declare myself housebound? Once all lines of treatment are exhausted, where do I spend my last few days and weeks? Home, hospital or hospice? I don’t think there’s a magic eight ball for that, but I’m sure someone who plays these D&D type games could furnish me with a dice. Once I’m there on my one way ticket, is it even worth trying that other thought experiment of whether I’d want an assisted death. Not really, in my case, but I dearly hope those who are presented with such a decision in a few years’ time will at least have that freedom of choice. If there’s one thing I’ve learned to value in recent years, it’s freedom…liberty is priceless.
For now, I can endure whatever is put in front of me and enjoy whatever quality of life that brings. For how long? Knowing myself, probably longer than would generally be expected. And it would take a lot to completely consign myself to that ever-shrinking world. Because – not yet having reached 40 – I still have so much to give to it.