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.