T + 393. My Kryptonite - Cyto Megalo Virus

Frigging Arseburger and Chips.

Just saw a couple of registrars who had some news for me. When I was admitted on 04/03/2014 the Cyto Megalo Virus count in my blood was 110,000. Yesterday it was 75,000 and today it is 64,000.
When I was previously ill last year with it I was told that at 66,000 it was high so I really was quite fucked by the time I finally caved and admitted myself to Kings College this time 59%ish of people in this country already have  CMV virus inactive or partially dormant in your blood but due the majority of people having half decent immune systems you'd never know it.

For me being post chemo with new bone marrow and having not yet been re-vaccinated for anything, my immune system is what you might call 'shot away' and would struggle to fight off a kitten armed with bubble wrap. The upshot of this is that I probably will not be flying the coop here at Kings any time this week. Based on the figures above and this here calculation that I have made on the back of a fag packet, if the IV Ganciclovir that I'm being given is reducing the level by about 10,000 per day then it could be another week before it's at a level with which the team here are happy.

To recap - for any readers who may be on the path to a transplant here is a schedule of my current meds;

	Drug	Dosage	Type	Frequency	Used for
	Ciclosporin	150mg	Immuno supressant	Twice daily	Fights GVHD
	Ganciclovir	Dunno	Anti-viral	Twice daily IV	Fights CMV
	Budesonide	3mg	Steroid	Thrice daily	Fights colitis
	Prednisolone	30mg	Steroid	Daily	Fights colitis
	Folic Acid	5mg	Vitamin B9	Daily	Assists to synthesise and repair DNA (for mouth ulcers)
	Tacrolimus	Dunno	Immuno supressant	Twice daily mouthwash	Immuno supressant (for mouth ulcers)
	Mycophenalate	1g	Immuno supressant	Twice daily	increases Oral Bioavailability (for mouth ulcers)
	Betamethosone	500mcg	steroid	Daily mouthwash	Anti inflammatory immuno supressant (for mouth ulcers)
	Posaconazole	10mg	Antifungal	Twice daily	I think anti thrush
	Pentamidine	25mg Vapourised inhaler	Antimicrobial	Monthly	Prophylactic  against Pneumocystis pneumonia
	Zopiclone	7.5mg	Nonbenzodiazipene hypnotic agent	Nightly	Sleeping tablet
	Penicillin	500mg	Antibacterial	Twice daily	Prophylactic  antibacterial
	Omeprazole	20mg	Proton pump inhibitor	Twice daily	Anti-acid indigestion

As I looked each of these drugs up on wikipedia, I tried to avoid looking at the possible side effects as I am very aware that every possible minor instance of a side effect is mentioned and people end up scaring themselves.. I have to say that I was pretty much destined to have the shits and /or colitis as part of either the CMV or the cure. Ciclovir and ganciclovir  both look pretty dirty and I now know why my eyesight has dropped off over the past year as one of the drugs I read about has a negative impact on eyesight - floaters and soreness so at least I know it will get better when I get off it. I find it a bit bizarre that a bug that is  harmless to 59% of the population and unknown in the  40% balance could lay us guys so low.

Edit: re the reference to 'dirty' drugs above - here I mean this in terms of 'its a dirty job but someone's  gotta do it'. In that the drugs themselves are cytotoxic - cell destructive, to me this means that in order to achieve their primary objective which is the destruction of disease A or infection B there's gonna be some innocent bystanders caught in the crossfire, meaning other bits of your (or in this case my) body.

A bit like being one of the guys in the red Star Trek jerseys.

Looks like Jeannette may be able to come up and see me on Friday with supplies and clean duds - which I will sorely need by then - I've got sets of pyjama trousers starting to do the can-can on their own! I might get a little list together actually- bags of crisps and junk to satisfy this recent horrid urge to eat crap all the time. So although it hasn't been confirmed yet I'm taking a punt that I'll be here until the 26th March. As a concession to healthy eating I've bought an apple from the hospital shop. Might even eat it.

T + 392. Heads Up Georgie Porgie

Not a new story for the NHS but worth re-telling.

Chatting with a nurse this morning (Tues 18/03) and we got talking about the 40% tax rate - nurse specialists working in the NHS attract a higher salary due to the level of expertise they bring to the role. This is nothing like the salary that they would be paid for example, in Australia where there would be a 25-40% premium on the wage paid here, which accounts in part for the NHS staff here flocking there everybody knows someone who's off.

When rostered to overtime on top of what may be quite habitually be a 4 day 12 hour shift nurses usually find that resultant extra wages push them into the 40% band - not a great incentive to extend already long hours. The OT roster is posted in the expectation that staff will want to do the hours and claim the OT they want by populating it in advance. As stated the existing long shifts and the 40% tax bracket are proving to be a disincentive to some nurses to do this. Now here's the silly bit if  NHS nurses can't be rostered to do the OT guess who is called on to fill the places? Yep the jolly old private sector who will ship contract nurses to cover the shift. Although these nurses may have the relevant experience in the area in which he/she is specialist, they're not going to know the ward to which they are sent and may not be able to "hit the ground running". They will also cost a considerable amount more than paying overtime for the existing staff and we're talking A LOT.

 The Gov/NHS seem to be shooting themselves in the foot on this one. Why not move the threshold for the 40% allowance or do something to incentivise the staff - tax credits for specialised skills in nursing, anything to help stem the brain drain.The NHS will save money on contract nurses and better reuse of existing highly trained staff - and at a squeak if they got really stuck , contract services could still be used, but as a last resort rather than pissing money away as the norm.

Not sure about that wallpaper mate.

This is just one example of what must be thousands - a microcosm. Beats me why this beleaguered service has to tie itself in knots this way to satisfy the bean counters and middle management twats - and being an ex-middle management twat myself I've seen some fine examples  of moving the deck chairs around on the Titanic to make the columns line up. Will be listening keenly this afternoon to see what "Anaglypta George" has to say.

Bizarre - the drugs must play havoc with blood pressure I've been running quite heavy at up to 150/100. Sat in a hot shower for half an hour today before having medical observations taken on morning rounds and it was down to 127/80 lower than when I used to do gym 3 times per week.

Playing a game of sit and wait at the moment need to see if my bloods show the CMV levels decreasing over the next couple of days. Otherwise I won't be getting out of here this week. Not stir crazy yet as I've been able to leave the room and get outside for a couple of walks but want to get home to the family quite badly now. Very aware though that to leave too early will undo all the progress made so far.

T + 392 Fun with Q Tips.

It's fricking crazy 11mg (yeah U know I stashed one) of Zopiclone and awake again at 1.00am having been rendered stupid enough to eat a rice krispy marshmallow bar  - texture of a breeze block on my ulcers but too stupid to complete even the most elementary of Sudoku puzzles on my Nintendo DS, I think I just sat here looking at the pretty numbers...

Going to sit here and type out the brain farts until I can finally sleep. I can foresee a week or so of cold turkey from Zopiclone when I go home. It's not pleasant but I've done it before the pleasure of once again attaining natural sleep is worth a few days maybe weeks of disruption. Bored now.

Oh here we go set of swabs to do for weekly virus tests, 3 big Q-tips one for nose, one for throat and one for groin. Done and dusted and delivered also managed to scrounge a cup of hot cocoa while I was down there at the nurses station at the end of the ward.

Remembered another story from when I first checked in last week down in the chemo area (back room with the nurses at HOPS - Haemotology Out Patients). I had the rats because at the time I was in a shedload of gut pain and had been for weeks and had ended up having to wait for four hours while they juggled to find me a bed, first it was to be Davidson Ward then Waddington so I just sat hunched up and grey faced wishing the minutes away. Then a nurse appeared with a fistful of swabs and I tried vainly to remember where they went. Nose, Throat, Groin and lastly the Clacker for MRSA. So we did the first three and I said;

"This one in the bottom then?"
She looked at me said "No nose again this one"
"Oh OK"
Then another " Right this one then up the bum?"
Stark look "This one throat again"
I thought I needed to retrieve the situation -
"I hope you're not getting the wrong idea here I'm not fixated with sticking them all up my bum "- lame pervy sounding snigger.

I'm not gonna lie people - it hurt.

She handed me the last one "We only do one weekly MRSA and that's this last one"
Me " er... bum then?"
Nurse " To your hearts content" - big grin she had definitely made her mind up about me.

Ok 3am been spunking money on i-tunes buying up old 70's bands albums I've only got on vinyl otherwise, all the Be bop Deluxe, Tubeway Army, Ritchie Blackmore's Rainbow. Did a custom playlist to show all the tracks I've actually purchased through i-tunes over the years and was staggered to find its 650+ I mean SHIT that's a lot of money on music.

Sleepy now may get a couple of hours.

I did until 5.08am so time for crisps and listening to all the music I just bought. Should have brought headphones with me like last time - as I tell Milo in the car ear damage is a small price to pay for the appreciation of good music. His eldest brother got away with it as I only had partial weekend custody while he was growing hence his music tastes were minimally influenced by me and are/were 90s onward and not the good stuff, Hip hop club street the wave of turd that washed away the previous 35 years of musicianship and songwriting. So with Milo I want at least to give him the choice of experiencing music from the 60s onwards as I did so that he can form his own personal tastes as opposed to the very disposable music that kids are sold today. Have to admit though that one of our bangers in the car is "Fight for your right to party" by the Beastie Boys.

Even though he will come to find his own tastes in music as he matures I would like Milo to experience the Beatles, Stones, Motown, Beach Boys through to 70s Rock and Punk, 80s New Wave and New Romantics and I think we'll get at far as grunge and mid nineties Brit Pop.  After this I think the scene just disappeared up it's own arse and started all over again. My musical tastes were informed my parents stuff from the sixties and the love of it has never left me. I hope to pass it on.

Off for shower and brekkers before they hook me up to the infuser again. I found that after I sat in the shower for 30 minutes yesterday that my blood pressure dropped from 150/96 down to 138/85 - not far off my pre-transplant norm - so they really do relax you and at least temporarily counteract the raising effect of all the meds. I'd guess ciclosporin is the guilty party here.

T + 391. He's gone a bit Roy Orbison.

17/03/2014

Haemoglobin: tba
WBC:
Platelets:
Neuts:

Weight: 60.1 kg

Ewwwww- the cannula  in my left forearm failed about 3am this morning I was being given a phosphate drip overnight - you can kind of sleep through it. But I blinked awake feeling rather moist it was like I'd been set up that  in that trick where someone puts your hand in a bowl of warm water when you are asleep and you pee yourself. After a couple of episodes this time last year where I had heavy bleeds in the night due to low platelets I wasn't particularly able to exclude any/or all bodily fluids being involved - so I got the light on double bloody quick and checked my bad self out. Phew - just loads of leaked phosphate salts and a little blood. Nurse Becky got me mopped up and changed the bed sheets - good as new. Got the cannula replaced to a more comfortable spot as well.

Normally when you are admitted for treatment on this ward you would be pre-fitted with a Hickman line which goes in the upper right chest and gives the team 3 ports to drip feed direct into the aorta (I think). Seeing as I'm not here long term I've got a cannula (one feed forearm or hand) which has to be moved to a new spot every 3rd day. As there's only one feed they have to keep it in use for about 12+ hours a day which isn't so great but y'know  - it's got to be done - and having a Hickman is quite a big thing to live with.

Had a visit from my Consultant Victoria Potter and a group of 3 registrars plus a nurse this afternoon so my tiny room was pretty much crammed with 5 females standing around the bed while I spoke with Victoria about how things have been going and she in turn updated me. Given my condition when admitted just under two weeks ago I am feeling a couple of thousand per cent better now - the only gripe is a small resurgence of mouth ulcers from where the mycophenylate was dropped.

But on a deeper level I must've been concerned about more than I was prepared to consciously acknowledge. I brought up two things first wtf  (not literally) with my platelets - lowest they've been since chemo and that's been with infusions topping up my existing levels and the other brain worm, the results of my bone marrow biopsy. Someone dropped a penny in my well last week that I didn't pick up on at first - but it was something along the lines of 'even if your chimerism is at 100%, it can sometimes drop back' ie there's a chance that some MDS ridden bone marrow may regrow. Now I think I just dismissed this out of hand at the time because it wasn't something I wanted to hear. But it never completely went away.

Anyway back to this afternoon, the low platelets is down to me receiving large doses of ganciclovir by IV. Turns out that if I did have gut GVHD, it's now gone and the culprit responsible for all my recent lavatorial slapstick is that little fucker the CMV virus. Fortunately my levels look to be dropping and I'm responding to the IV therapy which 'is nice'.

your blogger - seen earlier today

So the next bit was about the bone marrow biopsy and as Victoria started to talk I phased a bit found myself inexplicably getting very choked up and a bit bleary eyed. Not a clue where it came from but all I could think of for the next minute or so was keeping my face contorted as to not show any emotion and "Keep your shit together and stiff upper lip now chap - you can't blub in front of all the ladeez". What a turd.

The upshot of which is that my bone marrow still tests at 100% chimerism and if my CMV levels continue to drop I could be going home at the end of this week.

BOO (and I believe) YAH MOTHERFUNSTERS.

T + 390. Space Hopper Walkies.

Sunday. 16/03/2014

Allowed out of the isolation ward for walkies in the sunshine today, so I'll go have a stroll down Camberwell High Street/ New Road. Must remember to to indulge in some local pastimes;

1) Send some money home via Western Union.
2) Go betting
3) Have a look round Junkie Bank (Cash Converters)
4) Stock up on Quat (Khat?)
5) Get some pay day loans.
6) Have a Morleys/Nanados/McDs and Greggs
7) Pawn my Blackberry
8) Throw rubbish on the street - might even spit.

Funny to think that I lived and grew up in this kind of area for 40-odd years and never quite realised what a craphole it is until I moved to the country. Whenever I have to travel back there is almost an element of claustrophobia involved as the trees and fields make way for the great black fried egg that is London.

Looks like all that fun will have to wait. My hands have started to do the claw again - I'm sitting here with my fingers splayed out like a gecko - so it looks like I'm getting a bag of salts infused to sort the cramps. Bollocks. I have an update on this - doc tells me that ganciclovir and valganciclovir (which I'm having to treat CMV) can deplete essential salts which can lead to cramps.

So after the salts are in I'm determined to get out and go for a walk just to try and help me sleep tonight because the sleepers aren't doing it for me and I really don't want to go down the path of increasing the dosage....oh and I am actually gagging for some junk food as well.

There was a story that I had wanted to pass on - which had slipped my mind, from the first day I went over to Guys Hospital last week (Weds?). The ambulance had pulled back into the Kings and we were queueing to get to the front door so I could be dropped off. I'd been chatting away to the driver all the way back when he said;

A lady - yesterday

"See this? This is what pisses me off."
"What  - the queueing?"
"Nah - you see that woman over there?"
He nodded his head to indicate a lady of larger (no let's be honest) - distinctly space hopper appearance in sporting wear who was working her way down the stairs outside the hospital.

"Her? What about her?"
"She gets driven here 3 times a week, hour and a half each way for free."
"What  - because she's fat and mobility disabled?"
"Do you think she looks it?"

Actually she wasn't having much problem moving around, in spite of her size - she reached the bottom of the stairs and stood  looking expectantly about her...then reached into her pocket for her mobile and started texting/surfing.

Driver - "To get free travel she claims that she is so blind that she can't get here by herself using the train or bus because it would put her in danger. She sat in here and laughed about it."

Looking at her it occurred to me that the only way her eyesight would be a hazard to anyone would be if she didn't see you were already on a chair and sat on you.

Testament to the incredible job the NHS still does in the teeth of disgusting self interest like this.

I really do f**king hate people sometimes.

T + 389. Inn vitch I meezt meinen doppelganger - ja

15/03/2014

Haemoglobin         107
White Blood Cells  2.9
Platelets                  47
Neutrophils            3.23

Weight                  63kg

The blog site view counter passed 8050 views in the night which came as a surprise as it was only ever started to keep 20 or so family and friends in the picture re the original treatment. In the 13/14 months since transplant and then starting the blog and the 68 months since diagnosis I realize I once carried a very short-termist outlook in my attitude to MDS in the early days and would quite naturally forget I had it - until fatigue kicked in and the dashboard lights started flickering. I was able to work for a further 41 months whilst commuting between Battle and London  - roughly four hours travel a day and twelve overall.

I had very much convinced myself that by keeping fit, doing weights, supplements and pushing my body to be in the best condition possible that I would ace the whole situation - especially when my sister was found to be such a great donor match and although there were nearly four and a half years between diagnosis and transplant, ridiculously now, I can remember wishing that things would accelerate so that I could get to the BMT stage faster. This I can now freely admit is absolutely moronic as it distracted me from living a perfectly good present.

Depending on age going in, health, the obvious advances in medical technique and I think just dumb shit luck many more people now achieve recovery/remission - but none of this is reason to wish away your time pre BMT the life change package is wholesale believe me and not just for a week or a month after chemo.

 Now something quite rum happened to me earlier today so read on and cheer up.

This morning I had to go over to another section in the hospital to have some pictures done of the GVHD ulcers on the inside of my mouth. They'll be used for comparative illustration purposes in case they come back and/or worsen and also -when anonymised, will be used for training materials by the students in the dental college as although ORAL GVHD isn't rare in BMT recovery, the whole BMT thing is rare and specialised enough in and of itself to be of  interest.

Failing that the HGV drivers in France are welcome to use them to scare the Albanians out of the backs of their trucks.

At my ward I insisted that I could walk perfectly well and would welcome the exercise, but you have to be wheeled everywhere around the here by a porter. Anyroad we eventually found the lab in the basement of a building across from my ward block and at least I got to go out in the sun.  It's weird how quickly you can get used to being outside in daytime in your pyjamas, - I like to pretend to catch and eat the odd imaginary fly just to keep the rest of the punters at a distance - this is South London after all.

The porter took me to wait for my turn to be photographed - there was one other lady in the waiting area.

He knocked on the door;
"Got Mr Storey for you here"
The door peeled back and a woman of about thirty emerged looking unnerved .
"Nicholas Storey?" she said - distractedly.
Porter "Yep - here" nods down to indicate me.
 Oy  oy I thought - news travels fast.
"But he's already here being photographed!"
This sounded like fun.
Me - "Really  - can I see him?"
The porter looked askance at me - I could see he was wondering what sort of ward he'd just collected me from.

We all turned (including the other lady) and craned our heads across the corridor to the door the receptionist was indicating. She walked across the corridor and swung the open the door talking animatedly as she entered, - the rest of us shuffled over to have a look in and, sitting in a wheel chair, was a tiny wizened old  man wearing thick glasses, huge owlish, blinking dark pupils, completely bald apart from a couple of white patches behind each ear. He really was a very old and his head looked like a baby bird's. Lordy.
This image wasn't at all helped by the fact that he was gimped up holding a couple of clear plastic retractors to his lips to pull his mouth open as wide as possible so that the photographer could get snaps inside his mouth. He clearly did not have a Scooby why (but like all of us in hospital obviously had faith that someone did).

"Hello Nick" I said and gave him a wave. The door closed - hard- and we trooped across the narrow corridor to the waiting area. The porter was bleeped and headed off double quick still not entirely sure who was who. I feel a little embarrassed to say now that I dissolved into wet sniggers when it dawned on me that on top of it all, the guy had been Indian or East Asian. What the bloody hell was his name Nikram Storesh? Nikesh Staru the mistake was just too bizarre. Turns out not at all. Even though in-patients are barcoded and QR'd up to the chin this was just one of those instances where they were expecting a guy at 0930 for mouth shots- were given a guy at 0930 and so gave him mouth shots - a rare mistake- but for me just the cheering up I needed. I really thought I was going to meet a noble alter ego or the non evil twin.

He was out 10 minutes later having had (I think) his swollen wrists, ankles and manky nails documented for posterity. We had  a sweet and gentle chat while I was waiting for my turn and I showed him how to flash his QR patch for the barcode readers so they'd know it was him. Looked fuck all like me though. Very polite old school chap - lovely.

My shots were done in the next 20 minutes and I got to have a go with the mouth calipers and the gimping
(I think she gave a new set) so I left him there waiting for his porter and took a slow walk back to the ward via the sunshine and the shop.  Where I filled up on more crap food. I have definitely developed a weird food streak since being back in here, with more mouth ulceration you would think that prawn cocktail or super ridgy steak crisps might be to be avoided but I crave the acidic salty little bastards no end and sit here in floods of tears coaxing them down. Pure masochism.

T + 387. To Paraphrase Carly Simon 'Your slow veins'

One other bit of news I had yesterday is that I have to go back on the Pentamidine inhalers once a month, this is to treat a very specific type of pneumonia to which  low immunity sufferers are prone. Originally I was quite pleased to leave these behind and take a pill called Strepsin instead because Pentamidine - although a life saver tastes like leper cheese and makes you want to turn your  mouth inside out over your head. Strepsin though, may be the reason that my platelets have started getting stepped on and as I'm red lining on 3 separate immuno-suppressants - with more being added, so I'm going to cut my losses and smell the cheese    - choose life.

Midnight Weds/ThursMorning - More sleep deprived night time gabbling, waking up partway through a dream to a conversation I'm having with no-one in the room. Laptop on - I can easily see how the sheer diverse range of entertainment content online keeps kids pinned indoors on PCS and drives them batshit with sleep deprivation.

Came across a fascinating blog today called http://sometimes-interesting.com/ These guys are urban/industrial explorers with a special interest in abandoned military, industrial, theme parks, holiday resorts and ghost towns across the world. With land so tight and at a premium in the UK and people crawling over each other like puppies in a basket to get here,  it kind of boggles the mind that the rest of the world seems to have so much space that it just leaves vast tracts of brown land filled with venerable old buildings to be ivy split and sand blasted out of existence. Detroit is mind blowing and looks a bit like a set for a videogame

Better get that baby goop down ya double quick fella

Well the transport posse didn't screw up today - just my veins. I think there's a bit of input fatigue going on and they couldn't really stay inflated properly so the photo-pheresis took nearer four hours than the usual two but wtf where did I have to go anyway? It's not like I was "Hurry hurry get me out of this sh***y part of South London forthwith there's a much shittier part of South London I need to be" - Funny enough though that's what most of the people I saw today seemed to be thinking...I think they call it commuting.

Felt most sorry of all for the guys running the dept - they were mobbed today - all 6 machines running full tilt and a waiting room full of fresh punters. We all sit up in the air on dentist chairs with clear plastic tubes plumbed into our forearms and once the process starts you ideally need to keep your arms as still as possible to maximise the blood extraction flow to 50ml per minute. Problem is if you kink your veins or the tubes move and the flow drops too much the machine sets off an alarm which needs to be reset before it will continue running so it's a real pain in the a**e for the nurses if it plays up. There is a weird kind of ceremony to it all which has become evident over the weeks I have attended. The first thing is to get as much tea, coffee, food and hydration into ones faces as quickly as possible and set up ipods or e-books before being hooked up to the machines. Once you are hooked up you're pretty much stuck in one position until the blood has been gathered into the machine (1 - 2 hours). Then you get one arm back as two tubes now get plumbed into the left arm for the return of the photo activated blood. Oh but before that the light sensitising meds are injected into the bag of cells and if it's a sunny day, this is he point where we all don our sunglasses in unison like some kind of crappy raddled terminators. Otherwise you can end up with incredibly sensitive skin and eyes for the next 12 hours. May need sun block in summer.