Duvet Day

Not for the first time this week, I started today with an empty diary and no agenda.  No commitments, no obligations, no pressure on my time.  Once I’d taken my chemo tablets at 7:30am, the day was all mine.  Morning coffee in hand, I thought about cracking open this oyster of a world and making the most of my recently taken anti-sickness tablets by doing something.  The sun was out – what about a walk?  I really needed to kickstart that marathon training – if the outside was too cold, maybe a go on the treadmill?  Come to that, some trombone practise would be useful too.  At very least, I could have filled the washing machine and allowed it to do some work for me.  This seventh day of cycle three could have been anything I wanted.  But the absence of worries was more than evenly matched by a complete lack of energy.

We all complain about being tired.  I’ve written two blogs approximately a year apart with that exact one word title.  People work twelve hour shifts in hospitals and building sites.  Teachers routinely pull 60-80 hour weeks in order to fulfil their professional obligations.  Parents spend years without sleep and scant respite.  People live with conditions like ME or fibromyalgia in a constant state of crippling depletion.

So no – today I’ve not been in a state of suffering unique to myself or even a small group of cancer patients.  But there’s no question that have a right to call this fatigue chronic.  As well as the deep seated ache that makes it feel like every muscle has turned into a concrete breeze block, there’s a lethargy, the like of which I haven’t encountered outside of chemo.  I probably could get up and do something.  But I am eternally grateful that I don’t have to.

Even thoughts happen in slow motion, like I need to put another quid in the meter.  Not even the surprise sugar hit of sweets from Switzerland could help clear the stupor of being all out exhausted for no apparent reason.  Well – apart from that I’m being poisoned twice a day.

Hoping the feeling would pass in time, I drained two cups of rich Peruvian coffee whilst half-listening to the radio.  Sitting on the couch became a bit much by the middle of cup two, so I propped my head on a cushion and approximated the recovery position.  I recall a Mitchell and Webb sketch in which they make a running joke of the conquering powers of being just under two pints pissed.  Well I’d say the same for me and the freshly ground black stuff.  But today, it was barely enough to keep my eyelids open.

Wired, yet utterly exhausted, I thought I may as well challenge myself with some TV.  I’d gotten through Gladiators in the previous night’s energy dip, so set about finding something equally untaxing and came across a BBC3 type cautionary tale about drug mules in Peru.  By about 9:30am and maybe two episodes in, I was ready for a lie down.  Back in bed, sleep came easily and, upon waking after (for once) achieving the sleep of the dead, I found the impetus to lift my head a touch and lie awake for a bit.

By about 11:15, I was ready for action.  This meant getting not one but two feet on the floor, achieving the heady feat of standing and responding to a stoma situation, thus averting that laundry load I hadn’t gotten round to actioning. Well – I was up now.  So I challenged myself by watching a bit of Sunday with Laura Kuennsberg and immediately regretted doing so as I learned that former *ulture Sectary Jeremy *unt will be running the London marathon and gets to use the one joyous pursuit I really can’t do at the moment to make himself look really virtuous and – seemingly, by the big stupid grin on his face – endorphin swimmingly happy.  He ran seventeen miles yesterday.  Good for him, here here. Jeez I’ve made a point of not questioning why I am so unfortunate as to end up with cancer and not able do fun things like running.  But in this moment, I came pretty damn close to that kind of pathetic self pity.  Ok – breathe – relax – he’s not worth you compromising your dignity… when they go low, you go high! Thanks Michelle Obama – I needed to recall your amazing quote.  None of these tories are worth my contempt, let alone envy.

This was a mistake.  It turns out that furious indignation is also pretty tiring when you’re on chemo.  So after a hastily microwaved lunch, it was time for another power nap.  These are meant to last about ten minutes.  Try two hours.  I didn’t feel too bad after the day’s second solid sleep.  Plus there were two types of cricket to watch on tv.  Was I feeling better?  No.  I’d slept through the offer of a last minute ticket to a jazz gig in Dalston and that may as well have been Dunedin, because this cancer patient wasn’t making it out of the house.

Cricket finished, I found the impetus to order a takeaway in response to a strange craving for meat and grease that has persisted long since the steroid high that would explain such behaviour.  To my credit, I didn’t drift off to sleep again before it arrived.  Well fed, as per doctor’s orders, it was time for the main event of the day – another dose of 7:30 chemo tablets.  I should be some kind of influencer – clearly I’m (literally, with all these naps) ‘living the dream’.

But not quite a nightmare.  Given the constant tumult of life on chemo, I’m considering a day where all I really have to contend with is fatigue to be a definite win.  Today was probably in the top quartile of chemo days.  I’ve not been particularly sick and haven’t been beset by drug related anxiety.  As I’ve been inside all day, I’ve avoided the tingles fairly well and I’ve been quick enough with the Imodium to not produce bags full of ditch water.  Days like today were coming and I’m getting used to them.  Thursday and Friday were very similar and, after another successful taxi into music school yesterday, it’s probably to be expected that I’m paying for that today by spending most of my time under the covers.

Chemo is painful, unpleasant, frustrating, repetitive, boring, and exhausting.  But It’s still sinking in – hope against hope – that it might just be working.

And I’d take another month of duvet days for that.

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