T+ 2272 I must go down to the sea again....

30/04/2019

Had a look at the stats for this inane drivel and it has passed 22k page views. Which I find a bit suspect especially as one of the sources was lesbian sex chat room - I kid you not.

Just been given the wonderful news that I’m moving on from Kings College to Rye/Winchelsea General Hospital at 7pm tonight to start my rehab course. Overjoyed and excited doesn’t come close to explaining how I feel - the hospital is only half an hour away from my home. I’ve had a look at it on Google - it looks like a large country house that’s been converted and built on to and stands on top of a hill overlooking Rye and the sea.

My only concern is that I’m shipped out with sufficient suitable medication to manage my joint pain. I’ve had a hard time convincing the consultant here, but I’m pretty sure that GVHd has returned to aggravate the joints on both sides of my body. Wrists, shoulders, elbows, hips and knees on both sides are now exquisitely painful. I’m pretty much immobile when I first wake up as I can’t even use my elbows to lever myself up prone. A combination of paracetamol, slow release oxycontin (?) and oramorph kick in after about 30 minutes and rather like a lizard after a sunbath, I’m ready to start moving.

Are my meds on their way?

I’ve taken the decision not to have a PEG feeding tube fitted to my stomach. I judged that given my improving appetite and the risks associated with the up keep of the tube - possible infection of insertion site or blockages in the tube, I’d be just as happy putting on weight the old fashioned way.
My weight during my hospitalisation bottomed out at 54kg and change. Coincidentally this is what I weighed when I left hospital after my transplant in 2013 - although I was only in for a total of 7 weeks that time. I currently weigh 58kg and the trend is up - I just hope the food isn’t shitty at Rye and if it is will they allow outside food to be shipped in to patients? Talking of which I’m going to buzz now and get one of the staff to heat up my evening meal Tesco beef stew and dumplings yum.

My mobility is improving, I get around on crutches now rather than a Zimmer frame, my calf muscles and hamstrings complain like buggery as they are not used to being stretched but it gets a bit easier each time. I had a look at myself in the mirror after a shower today and I’m shockingly thin. My knee joints are double the size of my thighs and my shin bones stick out like cut throat razors. My face consists mostly of nose (friends might say no change there) and I’m deffo getting my Dobbie look on. The only positives I could glean is that, having been weaned off predisnolone whilst at Kings, I’ve lost my hump (Pred users will understand) and far from having moon face and Richard Nixon jowls I’m starting afresh with a skinny fat free konk face. I’ve also got rid of the big round belly I was sporting which means the dozen or so pairs of shagged out Levi’s I own will fit again. No more elastic band across the top button for me Daddy-oh.

So I’ve arrived at the rehab hospital, I have a lovely new sunny room on the ground floor with a view over a courtyard garden. Plenty of room to move around - no disrespect to the KCH people but my isolation room was so tiny that the nurses were constantly playing Tetris with all the pieces of kit just to get to me. No cooked outside food allowed here, but I'm told the food here is brilliant and fresh cooked on site every day so I’ll give it a go. So it’s all unicorns and rainbows so far

I’ve started to try walking without my crutches, just back and forth around my bed my gait has now developed into that of Buster Merryfield who played Uncle Arthur on Only Fools and Horses, proper cockney.

I left KCH with three bags of meds and one bag of personal possessions. The nurses at this end looked wide eyed at this and spent at least an hour coming to terms with this cascade of drugs so I had an anxious wait for my painkillers before trying to turn in for the night. They seem to have got their heads around it, because all my usual meds were in place this morning. One thing that slightly concerns me is that during my stay at Kings they seem to have dropped aspirin and amlodipine from my drug intake. I was given to understand that as a I have had two cardiac episodes (with three stents now in place) I would be taking these drugs long term. So it’s either a miracle and I should fall on my knees in gratitude or a fuck up by one of the registrars. I’ll find out on Tuesday when I have an out patient appointment at Kings.

Rituximab

Ah yes RITUXIMAB reallly does deserve its own little detour, even if nobody reads it.

For those of you for whom it was a success - congratulations.

This sidebar is for those of you for whom it might not have been such a stonker. I’d be interested to hear if we had shared experiences. I’m told that it’s a kind of shock tactic thing - an anti-body therapy used to hit cGVHD with a real blast to knock it out of existence. It is administered over a 4 week course of IV infusions,  done at your usual out patient clinic. I was given mine October running into November. It takes about an hour and leaves you spacey and tired and rest is given as the the best thing after - on infusion day.

Then you wake up the next day and everything is different:

 a) your body is now a shell.
b) it’s had all its insides taken out with a giant ice cream scooper.
c) you are some kind of ghost thing for the day but you can talk.
d) there’s a hangover lurking in the vicinity
e) you still look the same to other people

The Groke - a pretty good analogy for how you may feel on R+1.

Thoughts take a long time and things happen very slowly because the ice cream scooop thing took your brain off somewhere. There tends to be a lot of standing still and staring. I spent most of R+1 getting out of people’s way - until I copped on that the safest place was back in bed again,

Getting subjective it was the weirdest non recreational drug I’ve ever had - it really does applecore you then fills the void with vague uneasiness and a touch of hangover. You’d have just about recovered and got your self back together as a functioning human - when the next Wednesday would roll around - so you probably get 3 days of relief a week for four weeks.

 I finished the 4 week course as I was hopeful that I would be one of the lucky (38%?) for whom it works, unfortunately I was not.

There is a (my) tendency to think - Christ what a stupid twatfaced bolloks waste of time and unneccesary aggro, which sadly I must admit was the first port of call for me - but then you get to realise that this stuff is not cheap and I am grateful to the NHS for the opportunity to be given the therapy in the first place. And what if it had just worked out eh? What if it just had....

T + 2269. Gravel for breakfast and diarrhoea storms.

28/04/2019


At time of writing I am on day 107 of my stay in hospital. It has taken a long time to eradicate the bugs that caused both sepsis and pneumonia - they move around and lurk in pockets in the lungs. It has taken a cocktail of strong antibiotics to get me this far - 3 or 4 different types switched in and out over the months.  I’ve had multiple chest x-rays to help the docs track it down and fortunately they seem to have nailed the little bastard. I no longer spend my days (and nights) hooked up to multiple IVs. My oxygen saturation is up from 92 (using oxygen) to 97 - 98 without it. I’m going to tempt fate by saying things appear to be getting back on track.

Obviously the lengthy confinement has had an effect on me- for a period of about 3 weeks in March, I’m pretty sure I had an interval of depression. I stopped eating and just spent my days curled up in my dark room drifting in and out of sleep. I was not feeling sorry for myself, I was just feeling intimidated by the task before me. My body was skeletal, I couldn’t walk, I was wearing a fucking nappy and had a plastic tube slipped up the length of my dong.

I wasn’t issued with a dummy.
It would have been useful during
one of the diarrhoea storms.

The concept of merely getting out of bed and going to the toilet for myself seemed monumental, let alone being up and about and fit and doing again and I think the distance I had to travel was overwhelming me.

When I did attempt to eat I started gagging and coughing uncontrollably. To counter this, and the weight loss I was undergoing, I was fitted with a PICC line and fed through a tube in my left arm. After about a week the food line developed a bacterial infection so the feeding was stopped. My weight had gone from 72 kg down to 54kg. I struggled to eat, sometimes managing half a bowl of Special K, which to me was like gravel.

Yummy breakers!

It seems to be for me that it’s a lot easier to lose weight than to pack it back on afterwards. Luckily I got over the eating issues, don’t ask me how, I just woke up one morning with an appetite and started eating again and I’m very slowly regaining weight. At one time, there had been serious consideration given to the idea of fitting me with a PEG, which is a feeding tube that is inserted directly into the gut. But once my appetite returned, although it would have helped me gain weight more quickly I decided that given the possible downsides (infections, tube blockages) I would not go ahead with it.

Getting past the eating issue has been a turning point for me, I have more energy, my mood has improved dramatically and I’m now optimistic about the next move to the physical rehab centre.
The only cloud on my horizon is that my old mate GVHD joint pain has dropped round to chew the fat and the results are worse than before. This time it’s bi-lateral and in my wrists, elbows, knees and shoulders. When I wake first thing, I can’t really move - luckily the staff here are quick to top me up with a cocktail of oxy, paracetamol and ibuprofen to take the edge off and after about 30 minutes I can move. But I’m concerned that I’ll need to start using Gabapentin and Prednisone again - which will be  bollocks of the highest order.

My mobility is improving weekly. I still need the Zimmer a lot of the time but am hoping to graduate to crutches soon. One issue I have is that my thigh muscles are more developed than my calf muscles which have a tendency to give way without warning so I have to be sure to have some sort of support within easy reach just in case. My walking gait can be compared to a slow motion version of John Wayne, but with a sore arse - piles maybe poor fella.

T + 2264. In which I meet lots of new people and have some unexpected experiences.

11th January 2019

My leg was really very swollen indeed and a vivid throbbing red. I was unable to stand and had to drag myself into the dressing area like a wormy bummed dog, all the time making grunty man pain noises. Managed to find some baggy jeans to fit over the hot dog sausage leg. I could hear Jeannette rushing about down stairs getting my go bag ready- so cleaned my teeth and entered the fray.- 3 flights of steps doggy bum style until I was in the hall.

Just off to clean my teeth dear.

Managed to get upright enough to get in the car and it’s off to Eastbourne General Pevensey Ward.
I ended up staying for about two and a half weeks. Firstly to try and stabilise the insane swelling that was going on with my right leg and secondly, it acted as a holding bed while we waited for one to become available at KCH. The first objective was partly achieved - a cocktail of anti-biotics  stabilised (and maybe even slightly reduced) my elephantine right leg. But the consultant freely admitted that there was a limit to what Eastbourne could do and I needed to be at KCH to be ‘fixed up proper’.

In early February the long awaited bed became available at KCH, by this time I was pretty much wheelchair bound, as my left leg had checked out my right leg’s new look and decided to join in the fun. I was taken up to KCH in an ambulance and admitted to the Derek Mitchell Unit. Now I do believe that there must have been a couple of normalish days back then, when I was being hooked up to various IVs and getting used to a new drugs regime and chatting with visitors, but stuff seemed to get dark and serious very quickly.

My left leg blew up to the same size as my right, although weirdly not the same angry hot cerise colour and things from here on get blurry. I vaguely remember drifting in and out of consciousness and trying to talk to visitors but by this point painkillers, morphine etc were making it hard to make sense. I had conversations with people that weren’t in the room - to the hilarity of my visitors and at one point believed that the little sharps bin on wheels was a minion. An abiding memory is that whenever I woke up in the dark room, doped up and confused there was nearly always someone in the bedside chair sitting watching over me. It was at some point during this time I was shipped up to the Intensive Care Unit - apparently shit was getting deep.

I also remember constant all over pain and the clock that starts ticking in your head as soon as you are issued morphine or something else to banish the blues. Ok - this has got a half life of two maybe three hours so I probably need to use the call buzzer in about two hours from now - the time is 11.40, Ok call buzzer at 13.40. Remember that. Remember that. Experience had taught me that if you wait to feel the first tentative twangs being plucked in the pain banjo, then you are in deep shit. In the time that it can take a staff member to get to you, grab the prescription and get it down you-  after which you wait for it to kick in, you can find that the last previous hit metabolises and you are back to square one. When my marbles weren’t jangled or when I was nodding out, I was constantly trying to keep an eye on the time or checking myself for any changes in sensation.

I am told that my little cough had got its big boy trousers on and decided on being pneumonia again, this was swiftly followed by sepsis, both of which appear to be unrelated to my Mr Fatty Fat Legs symptoms.
Speaking of which , the swelling had continued north going as far as my hips. I was soon sporting the kind of curvy hip line that would turn a plus size model green. I woke one morning to find that I had been catheterised - this was just as well - as I was sporting a scrotum the size of a cantaloupe and the catheter sort of disappeared into the top of this arrangement, feeding down to a bag hooked onto the side of the bed.


I’m staring at a tiled wall pondering, how did this all come to pass then?

I’m standing (if that’s the word) in the bathroom of my isolation bedroom at Kings College Hospital, on legs that are wobbling like new-born Bambi with wet ramen noodle legs. My Zimmer frame is in front of me, I’m hanging on by both hands with a grip of death and I’m wearing one of those hospital gowns that is slit down the back. Hanging jauntily by a handle from the frame of my Zimmer is a clear plastic briefcase type thing that Is half full of my urine - a 10mm rubber tube has been inserted into the glans of my dick - this feeds directly into my executive wee wee case.

Yes you follow I think -  this is the first conscious instance that I can recall of having my bottom wiped by anyone other than:

a ) Me.
b ) That’s it.

I got used to it fairly quickly, the trick appears to be carrying on a normal conversation throughout. But the thing that pained me deeply for ages was to wake up fairly refreshed - almost ready for another day of this ball-ache in-patient monotony, only to find that someone had shit the bed. As disbelief and incredulity fade - you realise you have to ring the bell for a nurse to come in and deal with your shitty man/baby nappy yet again.

But the human spirit can overcome many things - extemes of heat and cold, . So let it come to no surprise to anyone that within a week or so I was quite happy to make eye contact and casual conversation with whoever was ahem on duty. Even going so far as to remind them that they’d forgotten the cream on my nappy rash.

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.

T + 2021 The (admittedly very long) calm before the storm.

SEPTEMBER - NOVEMBER 2018

TLDR:
Stunned to see that my last posting got 350 reads - this one should fix that.
If you wish to skip this one it whinges mostly about my numerous afflictions,blah blah, contains weak humour and four instances of bloody swearing including this, together with unfunny references to 19th Century Communist figureheads. Oh and a domestic violence/Godfather joke - but it’s all very precious and contrived so I’d slide on by if I were you - go get a Macca’s or something.

Obviously I'm blogging again and if maybe you're reading this arschfardle you’ll know that I only blog when I’m sick baby (Garbage song) , but anyroad the viral infection (HSV1) that gave me the cold sores has refused to clear up and is giving me regular nose bleeds so I'm back on loads of Aciclovir and a new one on me Valaciclovir. I've had Valganciclovir before and the main difference that I can see is that it had more letters in it - oh and Vala... is blue.

On the plus side though I’m one small cold sore away from the full Leon Trotsky look (working my way through the bad guys - hoping to stop before I get to Marx) which I’m sure will look just fabby when I’ve finished growing it. Nosebleeds are still very bad, it gets to the point where we wake up to a scene slightly reminiscent of the horse head bit in the Godfather, gore all over the bedding and pillows almost as if Jeannette had leant over in the night and given me a couple of smacks in the mouth and.......oh hang on a sec...

Can you pass the Kleenex over Darling?

I had been on 40 mg of prednisone per day, which was keeping the GVHD in the joints on my left hand side at bay. Weirdly my joint GVHD is a pure southpaw - so far not a peep on my right. (ominous pre-shadowing music here).

Anyroad as per usual once things are cruising along and have stabilized you try to titrate down on the steroids and my dose was dropped from 40 to 30 mgs. Usually this should be a piece of piss with no negative outcomes, but in this instance a difference of 10mgs appears to be all it takes to put all bets off and me back in play. So I've had a few days of sausage fingers and frozen joints - luckily my consultant has agreed to bump me back up to 40mgs and reassess. Some small oedema in my right foot, so I switched to hiking socks to help disperse. Better than doing anything about it eh? (it’s that spooky music again).

Now another new wrinkle is that I had some splits in my fingers from doing the gardening without
gloves on - you know where the dirt gets down the side of your nails and dries everything out. What with the sores inside my nose itching and bleeding I couldn't help but revert to my old Nicky Nicky Nose Picky 8 year old self and have the odd deep dig, with the result that I've managed to get cold sores on 3 of my left hand fingers behind the finger nails. Effing Gross. I keep them taped up with elastoplast as it is exquisitely painful to tap or bash them against anything.

When I get rid of (or stabilise) this virus the plan is to start a course of 4 x 1 day a week Retuximab down at Hastings Conquest which is brilliant as it saves me from the trek up to London.

T+1610 Five Years. What a surprise.

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.

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.

So I get the broadband re-anti-aliased or whatthefuckever and its working again, but I do feel a bit wobblesome so I disappear upstairs for a lay down until J gets back from dog walkies. When she does Shaun is out of the house like road runner. Living in a small village we later found out that he thought we were stark raving hatstand and genuinely could not believe what was going on. We sent him a note on FB to apologise for scaring the shite out of him.

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.