Chemo Life (again)

One of the reasons my blog writing has become so sporadic is because, at various times, it has been so obviously monotonous.  That’s what clearly happens when subjected to various types of chemotherapy with the odd break for radiotherapy, surgery and sometimes breaks to make use of relative wellness.  The repetition becomes as hard to deal with as anything else and there are only so many ways to describe how many kinds of rubbish you’re feeling.

Each chemo ‘brand’  (yes that’s right – big pharma, unlike me, is alive and well!) has its own particular problems to encounter and overcome.  The current combination of infusion and tablets causes more mouth ulcers and nausea than others I’ve been given as well as a good deal of excess saliva.  It’s all very well to be given a fact sheet full of potential side effects but it seems this stuff affects a person on a case by case basis and as usual, I’m a special case.  Things like energy cycles; this was present a bit beforehand but now doing anything before midday is a real achievement and tends to require a good dose of morphine to get me going at all.  Some days are better than others of course and quite regularly it’s the extra morphine that eases the pain enough for me to take the morning meds and slide back into bed, having checked my temperature hasn’t crept above 38.0°.  So far, I’ve been sent to A&E twice, but thankfully not for long enough to be admitted or anything.

All of this reinforces that I’m not exactly fit for work, nor have I been for some time – months or years probably.  The pension paperwork is hopefully being completed by the relevant HR and Medical professionals, so my official retirement will arrive later this year in the form of a lump sum that is available (on this scheme) only to those deemed to be in their last year of life.

No. – you won’t find me on any luxurious cruises or anything approaching that, much as I’d like to enjoy whatever joy is available to someone with dwindling time and health but a little extra pension.  

No – it’s sinking in that I’m really going to have to start growing up and in the least glamorous way imaginable.  Y’see, I’ve given plenty of thought to those last few weeks or so, what with advanced decision forms and LPAs.  Through single issue campaigning, I’d say I’ve got a very good idea of what’s going to happen at the very end.

No – This is about when I start to hear all of those words and phrases around disability whispered around me:

“He can’t manage that any more,”

“He lives alone, so we need to install an alarm system”

“Let’s start off with two carer visits a day and see how he goes”

“He won’t be able to do that and travel on the same day”

Some of these statements have already been made and others come from my imagination of my immediate future.  It’s not dying that terrifies me but that bit between now and death when I gradually slide into dependence.  When what I do with my life is no longer up to me.  I’m not quite there yet but as I feel myself weakening every day, I can see that weakness turning into an ever shrinking world that one day doesn’t extend beyond the front door without a good deal of help and logistical support.  I wonder if this will be fun – Maybe my little lump sum will be enough for a mobility scooter or something and I can challenge the local pensioners to drag races…

But all these statements have something else in common.  I fear I’m now entering the ‘social care’ stage of being mentioned of in the third person.  No – (despite the brain cancer) I don’t have dementia or any other of life’s cruel afflictions that cause or indicate obvious brain degeneration.  But that’s just how the caring profession deal with someone with a disability (as my terminal illness could be called by now).  Take district nurses; they’re amazingly selfless public servants who literally work 24/7, but are also obsessed with bed sores and presumably hold so few rational conversations at work that they don’t know how to react when I try to strike one up in order to gently remind that I can still walk, so bed sores aren’t yet an issue.  But they will be soon enough and I’ll be house bound and just keeping myself fed and washed enough will be enough of a day’s effort…then too much…then who knows…will I even be conscious enough to realise what’s going on?

But enough complaining.  It’s an inescapable fact that I’m the issue too.  For example, if left under my own steam (or to public transport) I’m invariably late now; I just move that bit too slowly.  When the offer of help, e.g. with transport, once felt completely unnecessary and even a little insulting, it now comes as a complete relief that I won’t have to spend limited energy reserves on trains and buses.  As recently as weeks ago, I wouldn’t have begun to consider travel as a form of energy expenditure.  And it doesn’t take long to see the irony here in that I’ve only just received my freedom pass, which will last until the spring of 2030 and maybe five years after my latest prognosis.

This is just one example of what I mean when I say that my deterioration in health appears to be accelerating to the point I’m noticing it, maybe, on a weekly basis, rather than gradually over months.  Perhaps this is exacerbated by chemo but I’m certain I’d begun to notice last summer, before chemo was really on the table.  No one has countered my assumption that the majority of my most recent symptoms are the result of the cancer itself, rather than any treatment.  It looks like chemo is just here to provide an extra layer of suffering whilst hopefully doing something to the cancer itself, which I’m still told is very possible and is why I’m still willing to accept whatever side effects come my way.

I can’t help but cast my mind back to the first few treatment cycles, where chemo came as a real shock and it remains that I would wish this whole experience on absolutely no one.  As I’m now on yet another chemo brand, it’s not possible to compare like with like but even if I’m now being given a reduced dose, it’s being given to a reduced person.  Engorged by steroids, enfeebled by cancer in general and exhausted by life as I now know it.

That’s how I could approach life as I now find it, as an ever descending doom spiral.  But likewise, I could cast my mind back a few short months and remember what I didget done.  There’s an album – almost released – that I’m incredibly glad was recorded in early (and not late) summer.  I got a bit of use from that brand new blue passport and travelled to Sicily to meet the youngest member of my family.  Track back a little and I survived a near fatal blood clot (PE).  Just before that I ran the London Marathon and now I can barely walk.  A few months earlier, I was at altitude in Tenerife,  taking in the thin air and complaining that I was too slow at running.

Well…now I can’t run. At. All.  I can barely play the trombone, as I showed a crowd of people in Romford, because (for whatever reason) I can barely breathe.  I really would like to be able to breathe properly again.

It is a cliche, but one I have found to be evidentially true.  Make use of your body whilst it still lets you do whatever you want it to.  Because – take it from me – you’ll miss it when it doesn’t.  Oh how the mighty fall… from when ‘listen to your body’ meant working out whether to go for 21 or 22 miles – to when to take the next anti-sickness tablet.  I’m off to do the latter, with the distant memory of the former just a tear in my eye.