T + 2074 The stupidity that went on in the meantime.

A bit of context.

In March 2018, I was doing pretty well, eyes good, no problems with the joints on either hand, left side body joints dandy and no mouth ulcers. It seemed that my Consultant, through trial and error had managed to find the perfect balance of medication to tamper down all of my GVHD symptoms. Immuno-suppression working with steroids and the other ancillary stuff (anti-bs, anti-vs) in a beautiful toxic, kidney damaging harmony.

Which is the problem you see. In an ideal world I’d have maintained this state forever, but it would eventually kill you just as dog-shit dead as your original ailment.You are always looking to slowly titrate down the amount of drug without reawakening the beast. Anyway my consultant said let it ride until the next appointment.

For the next six weeks, miracle of miracles I was steady state and attended my next appointment with high hopes only to be met by the ‘New Guy’. I know the perils of the NG now - I didn’t back then. They may have read your file, but they don’t know your quirks like ‘your’ Consultant does - they may they see you - but they don’t know YOU or the very unique foibles of your GVHD.

Dump the lot Mr Storey, you can live forever on Quorn mist
and asparagus farts -  said the New Guy.

But this New Guy started off well, he was just as keen as I to get my I/S and steroid intake down. In fact soooooo damn keen that he wanted to take me off pretty much everything. I didn’t know about New Guys back then you see. I was apprehensive, but what the fuck eh? - he’s a Doctor like all the others. I got excited by this bold strategy.
So we did it - and for the next four weeks life was bliss, I was cured - only 2 pills a day to worry about. No symptoms - I felt normal again.

Then I came up against my nemesis ‘the mild sniffle’. This apparently was enough to kick the fragile testes of my new found recovery into a new time zone. Things started going south - and rapidly.
Cue streaky bacon mouth ulcers, eyes like two dry pebbles, joints swollen - back to ground zero, my lovely recovery turned to shitey shite. Then came the viruses HSV1 ate my face and I had resurgences of both CMV and EBV, (look em up). Going back on the same level of drugs as before didn’t work - you have to find the magic formula anew each time. It’s like squeezing one of those spring loaded paper snakes back into the tin. Without the lid. So this is my life from June until September. This scene-setter should ideally have gone at the beginning of the last blog but it only just occurred to me so here it is. You’re welcome.

September to November 2018

Looking back on my behaviour in the last quarter of 2018 I can see that I had become complacent at least and more than likely negligent about my health and ongoing recovery. My thoughts were that as long as I kept on filling in my little pill dispenser marked Mon-Sun and took the pills on time, well I’d be alrighty righteous then.

You walks loike a twwwaaaaaat LJS

If you are immune-suppressed, self care is a big deal - listening to your body and noting any new stuff going on - new persistent aches or twinges and lumps and bumps and reporting these  to your consultant. I pretty much ignored all my own good advice and was out walking the dog with all joints seized down my left hand side - hopped up on cocodamol and rocking up the road from side to side like Long John Silver. Out for dog walkies for forty to sixty minutes then home to crash out in bed for two and a half hours.

My cough, ranging from randy walrus bellow to parched airless wheeze was ever with me. Moving from warm to cold air triggered coughing fits and contortions that did genuinely have me concerned (fucksake you’re 56 - you’re not Compo get a grip) - but not enough to make me do anything about it. In the weeks/ months approaching the main event, my Consultant at KCH indicated on two separate occasions (maybe more) that she wanted me as an ‘in-patient’, which is Doctor speak for ‘get in here right now’.  I thought I was needed more at home - my deferments must’ve driven her nuts.

The first indication that things were escalating was when the oedema in my right foot outgrew the hiking sock and started manifesting as an even bigger half pair of plus-four’s than before - my genius solution? A bigger hiking sock - right? Or as it turned out, wrong. Dick.
If at this stage I had presented to Haemotology o/ps as suggested by my consultant, my hospital stay would probably only have been a tenth of what it is so far. But rightly or wrongly (ok wrongly) I believed that my duties at home, dog walk, school runs, shopping, washing, cooking were more important than these minor things I tried to brush off.


The last straw was applied on Fri 11th January when I woke with a right leg so swollen and red that I couldnt stand on it.