Terminal Decline?

How many swallows does it take to make a summer?
How many rough days on end does it take to establish a predictable pattern?
At what point is it (un)safe to assume that I’ve entered that final period of decline, be it terminal or otherwise?
It’s not as easy to tell as one might think…

What a difference a year makes…or two…or three.  From winning ultramarathons (with now quite obvious cancer symptoms) to the 100 mile comeback, to last summer, where I averaged twenty miles a day traversing the entire length of the Mainland UK on foot.  Today I find myself propped up, half-lying on the couch, yet again trying to find a comfortable position for my back, every breath laboured, even at rest.  Perhaps I’m just struggling in the heat – that was all that appeared to be wrong on my last ‘false alarm’ visit to A&E.

When reflecting on how much is wrong with me, it’s also important to count my blessings, because in the almost three years since diagnosis (and over three years since first noticing symptoms) there really have been some.  ‘Quality of life’ is mentioned a lot in the context of terminal illness and apart from a few notable (and downright traumatic) exceptions, outside of treatment and recovery cycles, the cancer itself hasn’t really caused many problems.  Yes I’ve had to get used to living with a stoma.  Yes I’ve noticed a definite overall decline in peak fitness and my PB days are well and truly over.  Yes I’ve gained a lot of weight recently but if back to previously established routines, this could conceivably be shifted off.  No – I’ve not quite given up on the idea of returning to the full life I had before cancer and you can mark February 21st 2026 as the day I defy yet more odds and live past the date on which I was given an officially ‘terminal’ prognosis, meaning less than a year to live.  Whatever state I’m in by that point, we’re all celebrating.

It’s good to have something to work towards, I guess.  Even if that involves little more than continuing to breathe.  Given all the accolades and achievements post-cancer, it would be fair to ask if I’ve really gone so far down hill so quickly.  Am I over-dramatising the situation, making elaborate excuses or have I turned into the boy who cried wolf?  In truth, I’d quite like to know, myself.

But it is dawning on me ever so gradually that cancer is taking over and – though I find it incredibly difficult to acknowledge this as any kind of excuse – the disease is now causing me just as much trouble as the treatment.  Since the spread to my brain last Autumn, there has been both an acceleration in cancer growth and in the symptoms it’s producing.  Most of these are manageable with drugs.  Steroids reduce brain swelling and combine with Keppra to have kept seizures at bay – even if I daren’t go for a run in the heat or anywhere remotely remote – in order to avoid the involuntary act of suddenly falling over, unconscious.  In the new year, I started noticing back pain.  Was this down to the weight gain or middle age aches and pains? No – tumours in lymph nodes pushing themselves into pain receptors in my spine.  Never mind – morphine is taking care of that – and making me quite drowsy most of the time.  That near fatal pulmonary embolism (blood clot) that is likely still dispersing months after the event? Not to worry – I’m taking blood thinners.  And having tried unsuccessfully to reduce doses and dependency on some of these, it’s fair to say that I’m ‘lifer’ as far as medication goes and I dare say I’m not far off being given more drugs to balance the effects of the drugs I’m already being given.

The PE is apparently associated with chemotherapy, so my chances of suddenly dropping dead from another one aren’t currently huge.  But when combining all these co-morbidities, it’s understandable that my oncologist has judged that I’ll be dead relatively soon.  Despite continuing to respond extremely well to chemotherapy, it’s less a case of ‘if’ but ‘when’ this disease kills me – albeit slowly or suddenly.

It doesn’t help that symptoms are extremely difficult to judge.  Say I’ve got a headache – do I drink some water? Pop a couple of paracetamol and have a lie down? Or am I moments away from passing out? Do I need to call an ambulance before resting my head on a soft surface and brace myself for the involuntary jerking and foaming at the mouth?  Feeling a little short of breath?  Have I just over-exerted myself a little?  That doesn’t amount to doing much these days after all.  Or do I frantically call 999 and mention the magic words ‘Pulmonary Embolism’  to be immediately ‘blue lighted’ to hospital without passing go or collecting £200?  That nagging pain in my abdomen – indigestion, or one of those liver tumours digging in?  Loss of appetite?  I don’t nexessarily know what this indicates, but I’m constantly asked if it’s happening.  And whilst I’m experiencing all of these a little bit is that just to be expected in a heat wave?  It’s clear I’ve been struggling in the heat recently – more than I ever remember doing before.

It’s also difficult for medical professionals to judge this stuff too.  Two things are true: I’m receiving palliative care and the main aim now is to keep me as ‘comfortable’ as possible.  It’s also true that I’m the only patient on my nurse’s rounds who isn’t yet housebound.  This, combined with the offer from a ‘helpful’ district nurse of a hospital style bed to counteract bed sores, has set me to wondering about that middling period of decline that may well be the next stage I have to ‘look forward’ to.  In between now (i.e. able to walk around with impunity) and ‘checking in’ to my last conscious resting place of hospital or hospice.

‘You’ll need more support when you have regular carer visits, of course,’ opined said nurse in a kind of matter of fact, sing song voice.  ‘Oh, I’m not quite there yet!’ I confidently reassured back.  But this set off a thought process that I don’t much like to consider.  That of gradually escalating dependence.  Please let me be crystal clear:  I don’t have a problem with the idea needing care, no matter the cost in money and/or resources to any people or organisations.  As I’ve been at pains to point out recently, I cannot conceive of a situation in which I (or any other terminally ill adult I’ve met) would seek an assisted death because anyone – family, the NHS, or anyone else were going to any trouble or making me feel like a ‘burden’.  It’s not perfect, but this is precisely why we have a welfare state set up to be free at the point of use right until the very end of life.

But nonetheless, if/once I can no longer feed or clothe myself and won’t exactly be going out much, what kind of life will there be left?  At what point will it hurt more to digest food than be a bit hungry?  I’m not the tidiest person at the best of times but will there come a point where it’s more arduous to have a shower than effectively live in my own filth?  When will someone have to rub cream on my newly accumulated collection of bed sores?  I’ve got an MBE and everything – this imaginary near future really does sound quite…

…undignified…

And there it is – the single word that has become death’s own cliche.  I’ve long maintained that I’m not afraid of dying.  After all – death is coming for me soon enough and no amount of spirited resistance can change the certain reality of my situation.  I’m not even afraid of dying without dignity.  After all, having spent much of the past year campaigning on behalf of Dignity in Dying I am well aware what a dignified death might look like and it’s most likely (statistically speaking) that fate will grant me one.  If it doesn’t, I’ll just have to hope the majority of the public in favour can convince the House of Lords that a change in the law is necessary.  After that, I hereby offer whatever abilities I’ll have left in me to shorten the ‘implementation period’ that could see the first terminally ill adults afforded the mercy of an assisted death within a four year ‘backstop’.

No – it’s the lack of dignity approaching the end of my life that I’m really not looking forward to…no – lets forget the traditional British sense of understatement for a second – the thought of it fills me with terror and shame.  I dare say I can get used to losing the independence that most people who haven’t yet reached 40 will take for granted.  You’d think I’d have had plenty of practise living with a stoma and only the other day, I was forced to conduct a public bag change on the Elizabeth line.  I’m even a bit pleased with this – it only took two stops and avoided a good 10 minutes sitting with a foul smelling bit of gut exposed to the elements and furiously avoiding any and all eye contact.  But please – forces of cancer and medical assistive technology – let me be able to do as much I can for as long as possible – on my own.  It’s here that I fear having such loving friends and family on my side may become problematic as I’m ‘cared for’.  But this is surely a baseless anxiety – I’ve already found out that when life happens, you know who your friends are.  Well – I’m certain all those on my side will have no problem in stepping up, when the time comes, to ignore the persistent smell of bodily function that will inevitably accompany me everywhere sooner or later and we can all get through all the awkwardness with good grace.

And I’m pretty sure this is also where the charities I’ve been working with, for a matter of years now, will come in to their own.  I’m already receiving palliative care funded by Macmillan Cancer Support and have had some great ‘end of life’ advice from Marie Curie in addition to my local hospice of St Francis.

It breaks my heart to admit that cancer really is limiting me and starting to have a clear effect on my quality of life.  This won’t stop me offering my arm for the next load of chemo.  It won’t stop me living life as best I can, to go out into the world, to write, to play, to do whatever it is people do without a 3-4 month marathon training plan to follow.  This summer, it hasn’t and all I’ve had to do is take my foot off the gas energy wise and swap time spent charging up mountains for lounging around on canal boats and air conditioned apartments.  It might not even stop me slogging my way round the London Marathon once more come April.  After all, I have the ironic honour of guaranteed entry for life and I really do like a comeback.

More to the point, it won’t stop me trying my upmost to maintain as much dignity as I can, but also do something so so much harder:  Reach for help when I really need it.  It may take some time for it to sink in, but there is no indignity in that.