Especially as life with terminal cancer becomes increasingly difficult to deal with on a daily basis, it also becomes increasingly true that you really know who your friends are. Those who’ll be more than happy to do something fun together like take in a show or a meal. After all, how many more opportunities might there be? And/or those who offer to come to visit and accompany me on a very slow walk around the park, on standby in case I have a seizure or something, to stop me swallowing my own blood after I fall. Thankfully, this hasn’t happened as of yet. And of course those who’ve been known to drive for a good couple of hours in order to join a cleaning party and help make my little flat a bit more clean and comfortable to live in, or even presentable for the odd camera crew that still occasionally comes round, despite my recently well honed face for radio.
And so far, a particular need hasn’t arisen for those who are apparently the best kind of friends – those who will come to visit whether I want visitors or not. I understand the theory here – that it’s the ‘real friends’ who somehow ‘know’ that I’m putting up imaginary barriers and will feel better for the company, no matter how embarrassed I might have become by the state of my surroundings or, indeed, myself. I remember the original cast of the You, Me and the big C podcast talking about this, for example. And depending on how long a ‘housebound’ or bed bound phase I might have coming up, it’s more than possible I’ll appreciate the impromptu visits. It won’t be like I can put my own social schedule together.
And the opposite side of the well meaning sentiment can indeed be just as annoying.
“It would be great to see you there…only if you’re up to it”.
Oh how I’ve railed against that most condescending of phrases. Never used in relation to anything actually difficult like hill repeats or full days/weeks of working etc. After all, with a few exceptions, I’ve spent a good deal of the past three years surprisingly capable of being up to it, thank you very much, whatever ‘it’ is. I’m aware such phrases are born out of concern and are doubtless meant well when directed at me with a kind of ‘sympathetic’ head tilt that says they’re considering closing a couple of windows in case a slight puff of wind is going to knock me over.
And this is precisely why I’ve found it really difficult to get through the past few weeks and months of ‘rough patch’ that may be turning into an undeniably downward trajectory. It would help if I had one problem to deal with at a time. But that’s clearly not how it works and I’ve found myself having to deal with all sorts of small to severe problems concurrently. From heat management to energy levels to cancer symptoms to the side effects of various regular medications. Put everything together and I’ve got to admit it really is tough at the moment.
So as much as I hate to admit it, perhaps wondering whether or not I’m ‘up to it’ is a fair question to ask of me or even for me to ask of myself. Pain isn’t just humbling and debilitating. It’s really tiring too. This is why I’m being strongly encouraged by my palliative team to reach for the ‘top up’ painkillers more often, even if that means taking more of the various drugs which counteract their side effects. It’s all a bit of a balancing act and I’ve never been good at tightropes. But ready or not, it feels like that rope is getting higher and each misstep comes with more unpleasant consequences if I fall off. I don’t know if this is a common phase of decline but right now (as with the worst of chemo days) it’s an achievement to get to the end of any given day without making an unscheduled trip to hospital.
So at the moment, being ‘up to it’ is almost an irrelevance, because simply being comfortable and without pain at any given time is a feeling to wallow in. Even in this strange state, I’m doing my best to get out there and fullfil as many commitments that are still realistic. I’m making it into town and to the theatre – enjoyable days are still possible, even if I’m presented with another set of health challenges. Last weekend, I even completed the fairly mainstream bucket list item of being an extra on a film set. Despite waiting around being far more tiring than one might think, I got myself through two solid days of this and (due to the nature of movie production schedules) have a legacy that will outlive me by at least a year.
I’d like to think, therefore, that I’m still showing that it’s possible to live a full life given the circumstances. That I continue to be ‘positive’ whatever that amounts to by now. But I’m also a realist and I respect and listen to my doctors. So – the fact still remains that I am still dying of cancer and that living as far as 2026 will be as grand an achievement as any other by this point. But it seems this inevitability doesn’t stop people being relentlessly ‘positive’ on my behalf to the point of outright denial.
Perhaps this is a natural way to react because everyone, but everyone, loves to regale me with stories of those ‘one in a million’ type success stories of people living x years beyond a prognosis of certain impending doom. Such stories exist, of course, but weighed against the general population of terminally ill people, are vanishingly rare. And I’m well aware that whichever of three chemo options works for me next, we’ll talking about extending my life by months, not decades. We humans like to chase those lost causes, I suppose. No matter how things get, there’s always hope. It’s not this I have a problem with. Hope costs nothing after all.
It’s expecting me to be in denial too, as if acknowledging that I won’t reach the state pension age is somehow a sign of giving up or worse, being ‘negative’. I don’t seek to tell anyone how to grieve for me (because that is probably what is ultimately happening here) but likewise, I’d rather be in charge of my own mindset around being terminally ill. After all, it’s likely to change pretty regularly.
Now, I’d better get some extra morphine in me before another nurse tells me off…Cheers!