Full time Job

It really is for the best that I’m retiring this summer.  Because the demands of having cancer have crept up on me to the point that it really is a full time job.

If you haven’t seen me for a while, you’ll notice a few changes.  Nine months (or so) of steroid treatment have resulted in rapid weight gain and an increasingly puffed up face.  Consistently inconsistent sleep has produced serious eye baggage and (unfortunately) I’m not on the kind of steroids that athletes use to gain muscle, so I’ve gained a load of weight, and not the healthy muscley kind.

You’d think a bit of weight gain would be the least of my worries, but I can’t stop noticing and, indeed, going on about it quite incessantly.  That would be due to the steroids too – I haven’t got the ‘roid  rage’ but I have a serious case of the ‘can’t stop talking’.  Well…if I can summon enough puff to finish a sentence.  Since the significance scare of the pulmonary embolism, I’ve been told to ‘take it easy’ but enough time seems to have passed without significant respiratory difficulty that the medics aren’t really worried about that.  But contrary to the way in which most of my symptoms have been managed, it’s me who’s a bit worried here.  Because I’ve now learned that it doesn’t matter how many times you’re told the risk of suddenly dropping dead has gone down – if elevating my heart rate to the point of walking even a bit ‘purposefully’ makes me feel as I did when I almost died, my inclination to exercise my cardio-respiratory system really has gone down.

As a result, so has my fitness.  It doesn’t help that the drugs keeping me alive have some annoying side effects.  Blood thinners increase heart rate and I’ve now learned that those aforementioned pesky little brain-swelling-reducing steroids have caused a significant reduction in my ability to handle the heat.  I suppose that bucketlist Badwater ultra entry had better be put on hold and you won’t see me at the Death Valley start line!  But also – it seems – just existing in temperatures approaching the low 20s has become increasingly difficult.  That’s to the point that I was taken ill on holiday in Yorkshire this time last week with what was probably a nasty case of heat stroke.  This is another instance where my level of concern didn’t match that of various medical teams.  Unable to cool down and in a world of various kinds of pain I found myself doubled up on Maud’s sofa, just waiting until 9am when I could get in touch with the palliative nurses.

Now I’m really trying not to overdramatise here because soon enough, I’ll have very good reason for this thought process to pass right through my head again and again.  But the combination of unmanaged pain, heat related suffering and general uncertainty had me not just feeling intensely sorry for myself.  More than that – I thought I was going to die.  Maybe I shouldn’t give myself such a hard time for letting this possibility in.  After all, I have a terminal prognosis and as of yesterday, we’re six months into that year.

‘Is this how it ends?’ I thought to myself as I lay there whimpering on the couch.  A more rational train of thought wouldn’t have taken me to the end of that particular line.  But that’s the problem with pain and suffering – they don’t leave much space for anything else.  If any – pain really is all consuming.  It’s how I’ve taken to addressing an often-asked counter-argument around end of life choice, where my ability to just about be able to string a sentence together has been weaponised against me a few times.  ‘Well – you’re articulate/eloquent/erudite etc. etc. enough to express your views/requests but what about the vulnerable?  I’ll choose to ignore the condescending nature of this statement.  As if possessing anything short of the confidence of a mediocre straight middle aged white man makes one completely incapable of independent thought or advocating for themselves as opposed to being puppeted by some hypothetical imagined coercive influence.  What’s made me vulnerable? Pain and suffering.  It doesn’t matter how many major speeches or writing commissions  I have to my name, pain is humbling.  It reduces you to the point where you’d do absolutely anything not even to take it away but to ease it.  Spend long enough in this particular pain cave and nothing emerges beyond an unrecognisable shell of where a person used to be. But despite having been there myself a few times, I’ve never completely lost my ability to know my own mind…Anyway…

In retrospect, I really shouldn’t have gotten myself to this point in the first place.  I had an excellent tool at my disposal to alleviate the various aches and pains causing me trouble as all sorts of problems magnified in the heat.  This came in the form of a bottle of fast-acting liquid ‘top up’ morphine and almost a free rein with which to take it.  Perhaps I’d paid too much attention when being told about this drug’s side effects, because morphine is well known to halt the digestive system and mine was staging some kind of sit-in protest.  In my defence, at least one nurse thought it was a good idea for me not to take more morphine for this reason so I wasn’t being completely non-sensical.  But not for the first time in my bowel cancer journey, I was given laxatives to get things moving and no more.  It didn’t help that I was profusely sweating when everyone no one else felt hot in the slightest.

Making my way home that Friday afternoon was ultimately the right decision but on almost no food and still in significant pain, it was quite a challenge.  Fortunately, the drugs did help get things moving, but it’s taken quite a few variations in dosage and diet this past week to just about bring most of my various symptoms back under control.  As for the overheating, beyond experiencing far too many bag leaks for my liking, I’ve found ways to make my ground floor flat cool enough to tolerate, even in my current state.  I don’t know if I’m getting hot flushes or not but if so, let’s call this the manopause!

Following a long home-visit-conversation with my palliative nurse, dosages and routines are accompanying new painkillers (apparently nerve pain needs different drugs) and maybe I can be more sustainably back to ‘normal’ whatever that is.  I can’t help thinking that every such scare or episode is weakening me to the point I’m capable of less and less.  But that will only play out if I bow my head and consent to it.  I may have fallen a long way, but there’s a fair distance still to fall and I can still live a fairly ‘full’ life.  After all, I’m still forging a reputation as a palliative care patient still able to go outside under my own steam and would like to keep things way for as long as possible.  It’s difficult having to constantly scale back expectations.  It’s like my world is shrinking – from almost anywhere in the world being accessible, to nearby countries with decent reciprocal healthcare agreements – to different bits of the same country – to even that being a bit of a risk as demonstrated last week.  It’s not difficult to predict how my world will contract.  From my National Disabled Railcard being of questionable value, to the same thoughts about the newly acquired London-wide freedom pass.  Then I imagine I’ll be more of a candidate for the ‘dial-a-ride’ van to take me to special occasions like hospital appointments.  By this point, hopefully I’ll have gotten round to hang up framed photos to look at as most of my time is spent in the hospital-style bed that’s again been offered to me. There-on, I’ve already imagined enough of the ‘end times’ for now.

It’s not within my control whether or not I continue to decline as I seem to have this summer, but I can delay each stage for as long as possible.  And rather than gritting my teeth as life becomes increasingly difficult, there’s a chance I’ll have to try a bit harder not to be a ‘hero’.  I probably should more often apply the basic palliative principles of nipping things in the bud: take the drugs when the pain starts, not when it’s intolerable.  Perhaps this is a problem with being allegedly ‘strong’ and ‘resilient’ – it doesn’t always occur to me to make things easy for myself.  There are absolutely no prizes for prolonging suffering, but I really do need to regularly remind myself of this!  Now – where did I put that morphine? It’s time for a shot or two…cheers!