In February of this year I reached the 5 year mark. My 5 year re-birthday - transplant patients may tell you that this is a something of a milestone as the evidence appears to be that if you can make it this far, then the signs are good you're set to hang around a good while longer.
I had meant to write something at the time, but if you've read any of the preceding entries here you will spot a common theme - I generally use it to bitch and whinge when things go tits up with my health or I'm suffering from sleeplessnessness - and back in February I was doing pretty well thank you for asking, hence no screed.
Now however, I'm at the tail end of a horrible resurgence of oral and ocular GVHD coupled with a bout of truly disgusting face eating cold sores (EBV). The fuckers were everywhere and I had to give up shaving because I was smearing the virus all over my face and only making things worse.
At one point I pretty much had a cold sore Hitler moustache and resembled a medieval plague victim.
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| I aspired to look this good - you do not want to see actual pictures. |
I had stopped nearly all of the meds I had been taking for GVHD/transplant issues and thought I was finally out of the woods, but then I picked up something minor a cough, cold I dunno and that set the whole domino sequence in motion, so I'm back on MMF and Pred and all the other shite that goes with it - so I feel quite sleepless and primed for writing this.
I did a bit of number crunching and here's what I've extracted from the last five years;
Time spent in hospital as an in patient - 31 weeks (I've probably low-balled it here)
Tablets swallowed - 31,600x (ditto)
Heart attacks - 2x (one in each hemisphere of the planet)
Stents fitted - 3x
Cataracts removed - 2x
New eye lenses fitted - 2x
Kidney stones passed- 1x (felt like pissing tracer bullets)
Pneumonia - 1x
Double Pneumonia - 1x (definitely not twice as good as the single type)
Norovirus - 1x month
CMV reactivation - 6x
EBV reactivation - 1x
Episodes of gas gangrene - 1x
Foot surgery - 2 x (same foot)
Foot stitches - 12x
ECP sessions - 30 x (ish)
Max body weight - 80 kg Feb 2013
Min body weight - 52 kg June 2013
Current body weight 70kg July 2018
GVHD - eyes, mouth, GI tract.
Bakers Cyst - 1x behind knee cap.
Basal cell carcinoma - 1x (cool scar on right shoulder)
Bowens carcinoma - 1x leading to (see below)
Fingernails excised - 1x (creepy Gollum index finger left hand)
Bouts of colitis and assorted gastro-intestinal turpitude - a fuckload I'm guessing 5 months total
Hours spent on the lavatory - Indefinable and unknowable. I was in a trance. I was in anus hell.
Remaining kidney function - 80%
Cost of prescription drugs - 30,000 GBP (this is a low end guesstimate)
Episodes of bruising and discolouring my penis and scrotum so badly when dragging myself across my hospital bed due to low platelets that they looked like they belonged to Lionel Ritchie - x1
Would I do it all again? A resounding YES because of all the not dying it entails.
Favourite drugs over the past five years, well in the number one spot by a country mile is good old morphine, it got me out of some very nasty corners first with colitis and later the kidney stone. I spent many a happy hour with my headphones on monging off into the distance, dribbling gently, listening to the colours of my music. Next would be Gabapentin - I've heard some horror stories about it but so far it's been great - it got rid of the weird nerve pain in my wrists and as a side effect it gives you tunnel vision concentration and a nice head buzz. I get a lot of housework and DIY done on Gabapentin.
Least favourite - so this is joint first place. Step forward Prednisone and Zopiclone. Both do their jobs fairly admirably - it was the secondary stuff that did for me with these two. Pred, well again I've bitched about this extensively, you get moon face, a short fuse, insomnia and mood swings. My emotions sometimes ran so close to the surface that I would find myself reduced to tears (or as near as I can manage) by rubbish a sitcom or a less than manly squeaky fart.
I don't mind the ravening appetite it gives me though, it's actually helped me to pack on some weight and also to gain a tiny insight into one type of eating disorder. I do genuinely know how it feels to be casting around desperately for the next thing you are going to eat even when the stuff in your mouth and fist is less than half finished. That feeling rushing over your body when just the thought of eating makes your stomach flutter sends little jets of saliva into your mouth - and then to just keep going - thanks Prednisone. Four fucking breakfasts indeed.
Zopiclone. Coming off this was deffo no walk in the woods as I was still in full time employment at my big boy job and battling to get through each day/night with a twenty to thirty minute catnap every two hours. Weirdly, of all the tough times I've had associated with the transplant and its after effects, Zopiclone withdrawal was probably the worst - and that happened before the serious stuff even kicked off. Long term sleep deprivation can be pure hell.
If you are on it, get off it in your own time or you are in for a hell of an awakening (literally) once you become acclimatized to your regular dose and/or your GP stops prescribing for your own good. It's addictive as all fuck - but you don't get told that going in.
At times over the past five years it has felt almost as though I've in some kind of slow motion car wreck, careering from one impact to the next, hoping that the lull in between each bout of sickness or spell of hospitalization was the start of my real recovery. I've never stopped thinking that and I still don't. It has affected all of us. We are tougher and more resilient as a family and there aren't many things out there that would phase either Jeannette or I after all the silly shit that has gone down, we are both pretty much unflappable and share the same sick, sick, dark gallows humour.
And there have been some weirdly funny moments.
Picture a Saturday morning, early December 2017 chez Storey. We've been back in the UK since August and are still adjusting to our old lives back here - especially as I have only just got out of hospital after a 10 day stay with my latest bout of pnuemonia.
Shaun the Chimney Sweep is doing our flue in preparation for the delivery of logs we are expecting later in the week, Jeannette is in the kitchen and I have been on hold with BT for twenty minutes determined to get our fucking broadband back working. Whilst hanging on the phone I feel an eerily familiar shiver run down my left arm which I try to discount. Bollocks now its shooting. I hang on for a bit longer taking deep even breaths, concentrating hard - trying to zen the little bugger away. Nope that's not working, the shooting pulses are starting to join up into a continuous ache and as my old mate Donna Summer used to say this time I know it's for real.
''Er Jeannette?''
She sticks her head round the door.
Me: ''I think I'm going to need to go to Conquest (Hospital) after this'' (wiggling phone)
J: ''Why - what's up?''
Me: ''I'm having another heart attack''
Shaun looks up from assembling his brushes - his mouth is a big O.
J: - very laid back ''Well is it a bad one? Should we go straight away?''
Shaun is looking in fascination from one to the other of us at this point - holding his brushes very tightly.
Me: ''I've already been hanging on here for 20 bloody minutes. If I stop now Christ knows how long it'll take to get the broadband fixed''
J: ''OK - look I'll go and get you a go-bag packed and we'll head out after that''
She disappears upstairs. I give Shaun my most reassuring look as I clench and unclench my left hand repeatedly. Suddenly BT are back on the line and I'm being talked through security and how to reset our connection to a new automatically refreshing IP address (I have no idea) when Jeannette comes back downstairs.
''Ready then?''
Me: (the pain has dropped off a bit) ''Not yet J, I'm in the middle of getting this fixed - nearly there though.''
J: '' Well what if I take Wellie (our labrador) out for a quick trundle around the bottom field and we head off to A & E when I get back?''
Me: ''Cool, should be done by then''.
Shaun at this point is looking stricken. Fully expecting me to keel over clutching my chest as soon as Jeannette leaves the house - all of this only occurs to us afterwards of course - at the time to us everything was normal and tickety boo.
Milo was oblivious and hopped in the car with us down to the Hospital where the presence of triponin
in my blood stream confirmed that a cardiac event of some description had occurred. It was later found to be another partially blocked artery at the back of my heart. So bish bosh two new stents fitted and a week later I'm home. No biggie - move on.
It is the continuous drip, drip, drip of stuff like this builds a resilience and stoicism in people with chronic conditions (and by extension their carers and partners). Stuff that used to make us cluck and run around in circles barely warrants a raised eyebrow these days.
If I could cast myself back five years and pass on just two pieces of great advice to 2013 me - I well, I would be wasting my time, because I'm a dick. 2013 me was a dick and 2018 me is a dick, I never listen to advice - even good advice. I might nod and look attentive but really I'm just waiting for your lips to stop moving. But let's just say for once I really listened and absorbed what 2018 me had to say to good looking pre-steroidal non fat-faced 2013 me.
I would say first of all don't waste time trying to get your 'old life' back or try to be the 'old you' after your chemo and transplant. You can't and you won't - you may approximate a facsimile of what you were but what's the frigging point in that dumbass?
A consultant once described the chemo/transplant process to Jeannette as being akin to killing off you and then bringing you back from the dead. For those of us with blood/bone marrow disorders the very essence of what creates you, is destroyed and, in the case of allogenic transplants replaced by that of another person entirely. With this in mind it’s gonna be nigh on impossible to pick up where you left off and you shouldn’t beat yourself up for not being able to do what you used to do because the old you was zapped out of existence by the chemo. You need to embrace the post transplant you - and once you accept that you may no longer be able to leap a 12 story building with a single bound, things may come into focus and you will see yourself as a tough mother survivor and not view life in terms of mirroring your former self.
The second thing I would say to 2013 me is don't let yourself be defined by your illness. I wasted 18 months - maybe two years by allowing my disease and the fallout to live inside my head.
When I was first diagnosed, the news engendered feelings of victimhood and 'why me' and I'm embarrassed to recall that I did a bit of a dying swan act for a while. My internal monologue limited me - 'You can't do this because you're weak from the MDS' and then later it became 'Don't push yourself because you're weak and recovering from a transplant' and initially some of this or even all of it may have been valid and true. But there came a point where it wasn't true anymore - but my internal monologue didn't get that memo and I trundled along lost, listening to the old stuff for a long time.
For me and us, the make or break - and what helped snap me back to some extent was the decision to move lock stock to Australia for 3 years. It just became tough to live inside my head with all the bad news and aches and pains when there was so much real stuff happening in front of my eyes. So much to organise and get sorted if we, as a family were to make the move work. Plus a whole shitload of stuff to sort out once we made landfall at the other end. With hindsight whilst it might not have been the wisest move for us at the time it was definitely the best move.
If you've read anything of what I've written prior to this about our time in Australia you'll know it wasn't all lollipops and unicorn farts and happy-happy fun time from then on in, but the move did break the torpor and stasis that I'd fallen into. I was stalled, I wasn't moving forward with my life and I had allowed my disease and its aftermath to define me - it had narrowed the parameters of my life, redefined my outlook and shrunk my horizons. It's probably a lot easier to see looking back now than trying to see a future through the murk at the time - but that is the advice I would give 2013 me.
Oh and also 2013 me, make sure you give your favourite North Face hiking boots a sodding good clean before you put them in your luggage because then Australian fucking Customs won't be able to confiscate them for being a 'bio-hazard'. Bastards! It was only a bit of mud and my feet don't even smell - I'm freakish that way and known for it. I've never found a pair of boots as comfortable as they were and look I'm still bitching about them four years on. That's how comfortable they were.
Anyway I feel I'm drifting off message, so this will do for now.
