T + 2526 Hopefully going home (again)

Despite all of my good intentions, conscientious self care and best efforts at not being a dick, I have been unable to keep myself out of hospital. Today is Friday 13th September 2019 the end of my first week of readmission to Kings College Hospital. Symptoms pretty much identical to last time except swap out the kick off point from obscenely swollen right foot to super puffy right hand.

The rest of my joints are chiming in at various levels of red light/distress and thankfully this time I’ve kept enough sense about me to check in before things scream wildly out of control. I’ve dodged a stint in ITU this time around but I’m very doped up on both slow and fast release oxy, cocodamol and Prednisone. Oh yeah and the left side of my face looks like I’ve got a huge port wine birth mark. It’s not unlike Harvey Two Face from the Batman graphic novels.

FLIBBADAFLIBBADAFLIBBADAFLIBBADATHUUNK!!!! - fast forward now - to 11th January 2020. I haven’t felt the need to update as this sojourn has been a Ground Hog Day kind of thing, vomiting, inability to eat, temperature spikes - together with my hands and feet swelling and deflating with the tide. About 4-5 weeks after my readmission, KCH rare diseases made a breakthrough by tracking down the bacteria responsible for the whole damned thing.

‘That’s clearing up nicely Mr Storey’

It’s called Charisma Excessiva and it’s...ok, no it’s called Mycobacterium Marinum  ha ha auto correct just turned that into ‘perineum’. It is incredibly rare only 300 people in the US caught it last year, which by my dubious maths equals 0.000004%  or 28,000 people globally. It is contracted via contact with live fish, healthy people with uncompromised immunity systems would not be at risk. We wracked our brains to work out how I might have come across it and came up with two scenarios;

1) I may have contracted it whilst cleaning out the filter on our koi pond, gloveless and with an open wound on my hand. The bottom of the filter is a sludge of fish plops and I had my hands in there scooping it out.

2) ...and this is the preferred option, that I contracted it taking Milo dinghy sailing at Bewl Reservoir in summer 2018. I had large cuts on both shins from falling down the cellar stairs. At that time there was an out break of blue algae at Bewl and signs indicated that dogs should not be allowed in the water as it could prove fatal. Wearing only shorts and flip flops, I used to push Milo’s dinghy down the launch ramp on it’s trailer and into the water. After my diagnosis, a little digging by Jeannette revealed that Mycobacterium is produced by blue algae, and SHAZAAM there you go option numero deux.

When finally diagnosed it was found that the bacteria had so completely penetrated my system that it would take a long time to be purged. I will be taking a cocktail of three antibiotics for at least the next 18 months. I’m not going to hold my breath, but I’ve just been advised that I can go home later today (January 11 2020) exactly a year since I was first admitted.

I have spent 302 of the last 365 days in hospital I feel hugely grateful for the NHS who plugged away exploring obscure options until they came up with a diagnosis. At various times during my stay I was seen by the following departments - Dermatology, Haematology, Rheumatology, Rare Diseases, Ophthalmology, Dieticians, Pain Management, ECP and the Diabetes Department and had all the scans that it’s possible to have.  The care I’ve received has been above and beyond I hope to can repay their efforts by staying out of Hospital long enough to live some life this time around.

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.