T + 2333 Freedom. Tastes like Sausage McMuffin with extra Bacon and brown sauce.

The title?  Is what I’ve been craving for about the last three and a half months. I reckon I could manage two and if you haven’t tried this variant for yourself, then do your innards a favour and snaffle one up ASAP.

Well, by the time this is posted I should be safely ensconced chez moi. I finally got the all clear this morning (1st July) - the Consultant has made it abundantly clear that I will be supplied with sufficient painkillers to ensure that I can manage things myself, this was one of the worries that I briefly made mention of in the last blog. The other was that one of my immunosuppression meds (tacrolimus) was reduced, which appeared to have triggered an immediate response in the joints of my right arm and hand. 

I felt a real wave of despair on the morning I woke to find the old pains were starting to return, luckily I have a very proactive consultant who was prepared to listen to my concerns and act quickly on them. My meds were reinstated and, although it’s early days and my right hand side is still a bit dicky, at least things haven’t spread to the rest of my joints like last time.

The decision was made to send me home rather than via a physical rehab hospital, as in truth my mobility has probably reached the stage where they would have discharged me anyway. I’m signed up for the home care package which should see a physio start home visits in a fortnight or so. I don’t know if I’ll need one then, but this is probably the point at which I have to tell myself to stop being a dickhead and to take any and all help that is available. I can get around fairly jauntily on one crutch now, stairs and stamina are the things I need to work on - oh and hills, well more gentle slopes really. The slightest change of camber in a corridor or walkway gets me huffin’ and a puffin’.

I’m going to take this opportunity to remind myself not to be a dickhead and to;

• Listen to advice from loved ones, Doctors and other people that have my best interest at heart.
• Listen to my body - don’t ignore the warning signs that things are going down the khazi.
• Only take morphine for painkilling purposes, not for ‘Dark Side of the Moon with the headphones on’ purposes.
• Ditto with the oxy
• Pace myself, no diving straight back in trying to do the same stuff that I could in January.

Ok so it’s Thursday 4th July and I’ve already had two falls in two days, luckily nothing too damaging I did manage to break a mirror though and Ive learned that wearing flip flops when you walk like Uncle Arthur is not the brightest move on the planet.

I got home at midnight on Monday and guess where I am now?

You’re damned right I’m back at jolly old KCH again, this time as an out patient. Things kind of happened as I feared they would, the pain in my joints has spread to knees, ankles, elbows, wrists and hands. Not as severe as before, but hence I’m here to get my meds reviewed and my painkillers increased to Head this shit off at the pass. Tacrolimus has again been increased from 0.5mg bd to 1.0mg bd, slow release oxy is now 30mg bd and they’ve added in 20mg Prednisone od - so hitting this thing hard from multiple angles. 

Fingers crossed.

T +2326 The Waiting is the Hardest Part.

Day 163 in hospital.

Give yourself a pat on the back if you know where the title of this entry originates,

I had a whole 1200 word piece written and prepared for publication - which I read back after seeing some of the submissions to Facebook GVHD and MDS pages. I came to the conclusion that there are dozens if not hundreds of people suffering terribly who would be willing to swap places with me in a second and put up with my very minor current concerns. The blog entry I had written made me sound a little whiny, a little bit creaking door - so it had to go. Let’s just say although it looks like I maybe out soon,  I’m bricking it that something big will crop up or escalate to screw me over.

Instead I’m going to tell you about a couple of incidents that occurred over the last week that may divert and amuse. Here we go.

I went down to surgery to have a camera inserted up my bot bot  (sigmoidoscopy) a couple of days back - to check for signs of GVHD in my lower gut this could mean anything from reduced nutritional absorption, to the trots etc. Before the team got down to business, I was asked if I wanted a little something to take the ‘edge’ off. Now, I don’t drink, smoke or use recreational drugs and haven’t for years and years, but you know, who am I to turn down a free legal buzz? Furthermore a kodak up my butt-crack isn’t a memory I wish to preserve and treasure - so better to make this experience as fuzzy as possible.

So I’m laying on my side, wearing the special shorts with the slit up the back feeling a leeeetle vulnerable, when the anaesthetist reaches forward and slips the mask over my face. I start huffing on it furiously, anticipating a nice big hit to detach me from the fact that IT is about to happen - the secrets and wonders of my clacker are about to be on the telly.
30 seconds or so pass and nothing’s happening, I step up my deep breathing, really going for it - still nothing.
The lady due to carry out the procedure moves into my line of vision, all gowned up and wearing a see through plastic welders mask (I can’t bear to envision what must have happened to warrant the introduction of that particular precaution) - she’s looking perplexed.

“Mr Storey are you alright ?- you sound worried”
“This gas isn’t working - I’m not feeling any effects at all”
“That’s because it’s oxygen Mr Storey - you’ll get the anaesthetic injection in a minute”

Later the same week -

Due to above mentioned (possible) GVHD in the lower gut, I would say I’m spending quite a bit more time visiting the kharzi than the average Briton. Now, my calf/thigh muscles are pretty atrophied after 5 months of relative inactivity so when I sit down anywhere, I have muscular control until about the last 2-3 inches of the manoeuvre after which I just kind of drop down into position.

I think I was laying on the bed listening to music trying to grab a daytime snooze when the cleaning lady came in to do my room. Given that the Ward is full of pre and post transplanteers everyone is super fastidious about cleanliness and the rooms are thoroughly disinfected each day.  I may have dozed, I’m not sure but the cleaner left and nature started howling. I entered the small bathroom  backed up and dropped down into position.

Except it wasn’t the normal sitting on the loo position, this was an entirely new position. The type of position where your bum is immersed in cold water, where your knees are up by your chin and your feet are flapping fucking uselessly a couple of inches off the ground. The cleaner had left the bastard toilet seat up. So for the next 90 seconds or so I was left doing an upended tortoise impression, flailing around for traction to get my poor cold jacksy out of the loo. Such fun - I think there’s a term for it - Neptune’s Kiss.

T + 2319 NOT how not to lose your shit part two

17th June 2019

Day 157 in Hospital.

Ooer 23,000 views for the blog. I might’ve qualified for advertising if I didn’t love swearing so much.

Between 1.30- 2.00pm on clear sunny days the sun rises high enough to shine down into our little brick canyon and some of this sunlight reaches my window here in room 5. It starts as narrow slit and gradually grows until it casts a vivid, parallelogram of light on my floor. When this happens I hop out of bed, grab one of the folding plastic visitor chairs and go sit in it. Mostly it reaches my lower torso and thighs but if I crane my head forwards I can get the sun on my face. And it’s lovely.

One of my major issues now is gaining weight, which is lucky because I’m hungry all the time. It’s almost as if a biological imperative has been triggered by my body to recoup the proteins, carbs etc of which I have deprived it. I’m still mainly using M&S Italian meals as my lunch and dinner meals, but have stumbled across a ‘special’ patient menu which allows me to order hot snacks at any hour of the day. I’m filling the gaps between main meals with bacon or sausage sandwiches with brown, yes brown sauce. Fuck you tomato ketchup savages, HP is the one true way now.

Take a trip to <ahem> Brown Town

Disappointingly I lost 1kg yesterday which is mystifying but it hasn’t deterred me. I think I mentioned that my weight bottomed out at 51kg, since I managed to turn this ship around (again!) I’ve got my weight up to 55kg. Whilst this is progress it’s ridiculously light - it’s less than my eldest son lifts when weight training at the gym.  However it is bizarre how hungry I am all the time, as soon as I finish one meal I start thinking about the next - which gives me great confidence that with hard work and outright gluttony I can achieve the gains I need.

For the first time in a long time I’ve started to pay attention to my body. It’s a bit shocking how thoroughly the weight loss has stripped away fat from places you would never have believed contained fat in the first place. My hands are spooky skeleton hands - the webbing twixt thumb and index is sunken and the back of my hand resembles the Terminator’s when it has all the false flesh pulled off - all the little bones are clearly outlined and visible. The soles of my feet are concave - somehow fat in there has gone and left sunken pits.

Choo vunt ein manicure zere Herr Nick?

Saw my Haem. Consultant today, he is in agreement with what I’d hoped would happen and barring fire, flood or further infection (the hazard of long term hospital stays) I’ll be out by end of June. I’ve also been keeping up with the meetings with the in house counsellor - which have been useful in reminding me that I’m basically a dickhead that never listens to anybody’s advice. I need to be aware that getting out of here and trying to resume my previous house husband (Jeannette calls it house bitch) duties is not an option. I’m going to have to work to get back the strength and stamina I’ll need to do even the most basic shit. We haven’t even got as far as learning stairs in physio yet. I think I’ve written about this in earlier entries - but ignoring minor niggles and ‘pushing through’ the warnings that one’s body sends is just not worth it. But, being a dickhead I’ve no doubt I’ll need reminding over and over.

I had a couple of sessions of going through our photos on the iCloud, going back over about 8 years and it showed me that in spite of my fluctuating weight and fluctuating health, our family has managed to have a pretty bloody good time really. This gives me great hope that when I get my shit together again, we will continue to do so. Being around my wife and son and just being involved in the day to day of each other’s lives is something we’ve missed - and I’ve noticed my son grow and mature so much since January. So with any luck, this blog may fall silent again soon because I only whinge on here when I fall off my perch with a flare or an infection.

T + 2318 How not to lose your shit part one

5 months and 5 days of Hospitalisation.

16/06/19.

Hopefully a much more uplifting entry than the last.

My virology count finally dropped sufficiently that I could safely leave cell 15. No face masks needed any more and I have been moved to a new room. I now live at room 5 on the Derrick Mitchell Unit, it’s brighter and bigger than cell 15, but still has a window that overlooks more brick and more windows for a 180. degree view about 7 feet away, look up or down and you’re in a kind of brick lift shaft. I am immeasurably happier in here and my mood is light years away from the dark times I’ve  previously shared.

To keep my attitude positive and to prevent me losing my shit again, I have a regime/timetable that helps. 6am usually get woken for obs by an HCA and shortly after that a nurse will bring my morning meds  If they’re not too busy I cadge a cuppa and read the papers on my iPad - Mail, Independent and Guardian to try and get some balance in these horrible times.

I doze after this if poss until breakfast comes at 8.30am. I have my rituals here too. Same brekkie everyday Pain au chocolat, porridge and a black coffee. I lay flat on the bed and reach across to the adjacent table to dip the Pain au chocolat in the black coffee, bikkie style then aim to take glorious soggy bites without it falling on my face. This is followed by porridge with honey eaten slowly. I’ll sometimes have a slurp of the coffee but it’s main use is as dipping sauce really.

At 9.30am ish every morning a nurse will come into my room, arms overflowing with fresh bed linen, blankets, pillow cases and most importantly - towels. This is the signal for another part of my daily ritual to begin. Probably my favourite part - it’s me away to the bathroom to undress a bit awkwardly on wobblesome emu legs then take my place on the seat in the shower.

Not my legs - but near enough

For the next 25-30 minutes I have that jet as hot as human skin can bear across my shoulders, on the back of my neck, on the top of my head and I mentally leave the hospital and travel home to the family I miss and love so dearly - two hours visit in some government furnished hospital room is a poor substitute for just hanging out in your own kitchen simply being and vibing with the ones you call your own.

I can even venture out into our garden to take in the wondrous views of the Sussex Weald that our little house lends. Grasp at the greens and the blues and try to keep them within me.
I may do the school run and then on  the way back hitup LIDL in Bexhill for fresh baked croissant and that low GI bread they do in round loaves. All these minutiae from my old life are the tools that I bring out and use now and then when the NHS regimen starts to bring me down Bruce.

I clean my teeth in the shower, I have a shave too - putting off the moment that I have to turn off the water and let the chill outside the curtain hit my bony, fat stripped body. Dry off, fresh pjs and out to the room where the bed is all crispy fresh and military lines. I put on my thick fleeced dressing gown and sit atop the covers, reclining like there like a great big ponce.

The next piece of my schedule - 10am-1pm is time for James O’Brien on LBC. If you’ve ever listened you’ll know what I mean. Just chill, snack and sometimes doze with J’OB in the background.

T+ 2303 This one is not a whole bunch of laughs and there’s no pictures.

06/05/2019

Having a real bad one tonight. The painkillers can’t seem to damp the stabbing ache in my joints -and  it’s all of them tonight. Shoulders, elbows, wrists and knees. Tapping this out is taking a long time. I haven’t written for a while as I’ve had a dip and stopped eating again. I’m miserable and cold and in pain sitting here at 4am wearing one of my outdoor fleeces and a fucking beanie hat to keep warm. I’m nearly 4 months down in now in cell 15 and I’m miserable and I fucking hate everything. I wave the physios away and I don’t want to eat.

11/06/2019

Things have changed since then but I thought I’d leave the excerpt above in place as this was the only thing I got around to writing during the time that I crashed again.

The reason for the big gap in updates is that the initial positive vibe attitude I had on returning from rehab died quickly. My misery at being back in the same room and the joints meant I very quickly slipped back into my bad old habits of not eating and spending my days hunched up and miserable in fucking freezing dark cell 15. I had 3 and a half months under my belt by this time and felt as if there was no way forward.
Please believe me when I say the pain in all my joints was agony. I’m a fairly typical type of guy (apart from the rare blood cancer obviously) and I generally handle pain well. I’m not squeamish and I’ve got more than my fair share of scars and dents on my body and head as a result of mostly alcohol fuelled adventures - at least one that should have killed me. But I can handle pain, dentist - no worries, busted bits of me? - no fuss. Edit I’ve just remembered that I was stabbed in the face and through my left lung by a couple of chancers at a party in Hemel Hempstead. ( how the fuck could I have forgotten that?) I had a very prominent scar running down my left cheekbone all through my 20s, 30s and 40s. Luckily now it just looks like another wrinkle.

This was something different - without meds, the slightest movement in my shoulders, elbows, wrists, knees - though weirdly not my ankles, would send a slow, dirty, grinding wave rolling across the joint, instantly pinning me back to the bed. It took a while (and a different consultant) to be taken seriously and to get my meds boosted. The thing is it’s almost junkie like - as soon as I was dosed up in the morning I’d wait the half hour for them to kick in - but all the time I’d be worrying about the next dose. Would the nurse come in time ? or would I be left laying there waiting as the meds wore off and the acid fingers of pain started to immobilise my joints.

I really have no idea how long this second slide went on for. I was a hunched blanket clad shape turning my back on the world in a darkened room . For a while I tried to put on a sheen of normality (!) for visitors, but finally after my weight plummeted and bottomed out at 51 kg I cracked - that’s the same as a bag of cement I used to sling over my right shoulder.

Like most people with GVHD of the eyes, I can’t cry - I can produce a couple of feeble tears from my left eye - but that’s about it.
I feel robbed - there’s no way of divesting yourself of inner pain by putting your head in your hands and having a damn good soul cleansing cry and then enjoying the feel good hormones afterwards. I’m trapped - the best I manage now is breathless sea lion type noises that leave me deeply unsatisfied and still full of grief.

But I reached out. I told my wife that I had reached my limit. My resilience for coping with a brave face was gone. I’d tried all the equivalencies - I wasn’t in jail, I wasn’t in a Russian gulag it was only 4 fucking months after all. This stuff had held me in check for a while, but it wasn’t working anymore. I told everybody that walked into my room that I needed help - and again of course the people were there. I started having sessions with the psychiatrist and dumped all the stuff that had built up in me straight into her lap. The lightness of being heard by someone lifted me and I began to eat again. I think the shrinks report on me galvanised a lot of people. Where previously I had felt like one of those  sushi meals going round and round in circles, now I could sense movement - I started getting feedback from my consultants-  my meds were reviewed  (and halved).

I suppose you could  call this round 2. I’ve picked myself up and I’m ready for the real thing this time. The one that sees me out of Kings and into a rehab unit by the end of June or early July at latest.

T + 2275. Yay...oh

04/05/2019

So as some of you will have gathered from my Facebook page, my stay in rehab at Rye was not long lived, about 48 hours in all. As I may have mentioned I was worried about pain control for my joints which was for the most part things blunted to level that allowed me to be mobile on crutches.

This was the only vaguely humorous
picture I could find of someone on crutches

On first day at Rye I was zipping up and down the hallway on crutches and feeling really good about it. The physio was pleased as well and reckoned that it would only take another two weeks (at present rate of improvement) for me to be ready to go home. It was that night that things changed, by about 11pm the pain in my joints had spread to my hands and fingers even with a belly full of painkillers and, if anything, had come back stronger than before. I also had a temperature spike of 38 degrees and since I have a history of this alarm bells started ringing.

The nurses at Rye contacted KCH who, to their credit and my deep disappointment advised them to ship me back post haste. So I left Rye at 3.30am, arriving at Kings A&E at 5.30am to be booked in. Spent a long painful day on a trolley behind a curtain, being tended to by a nurse who was obviously crazily busy. By luck a bed became free on the cardiac ward at about 8pm that night where I stayed until 10am the next morning before being shipped up to my old ward the Derek Mitchell Unit to the same bastard cell of a room that I was in before. If anybody reading this ends up in here it’s poxy room no 15 where I spent the greater part of three and a half bloody months plus however long this time around.

This dear reader brings you pretty much up to date. I have to say Im mightily pissed off but not surprised. I think the last consultant I had here was a bit more concerned with getting me out door rather thanlistening to and addressing my concerns about the pain in my joints. After all, the baddies had all been sorted - cellulitis? - gone, pneumonia - departed! sepsis - absent. So why keep me in? Well they found out. I appreciate that places in rehab have to be grabbed when they become available but really...?

I have been here for two days now and it’s evident to me that Kings are determined to get me sorted out and back in rehab ASAP. Yesterday I had visits from specialist consultants in Rheumatology, Dermatology and Haematology all of whom have gone away to ‘have a think”. I’ve been started on IV antibiotics which appear to be working as I woke up 50% pain free today and able to move around freely with just a bit of a hobble -  bonus! I must say I have a lot of confidence in my new Haem.consultant .I’ve met this person before as an out-patient and I know them to be a good listener and someone who follows up and does something that they said they would.

An actual picture of my new consultant being attentive (honest)

Despite being back in shitty little room 15 I’m in a positive frame of mind because I can tell Kings are throwing everything at this in order to get me well again. I think their might be a few red faces at next Thursday’s meeting when all the consultants sit together to discuss patients’ files and they get to the one where a patient was discharged for nearly 48 hours.
PS I think hoping back to Rye after this clears up is in the stars for me because I’ve left my washing kit and electric shaver kit there.

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.