T + 479. Enough's enough.

Haemoglobin: 10.4
WBC:            2.55
Platelets:        81
Neutrophyls:  1.95


Cripes pages views now at 10140 - well this entry should take care of all that.

Boredom and ennui sinking in now - I've been in this room for 16 days and am starting to rattle. I feel well enough to be discharged - but also understand that the team here have certain criteria that need to be met place before I can get out. At the moment we are waiting on a CMV count from the most recent bloods in order to be sure that I don't have a reactivation when discharged and in the meantime I'm being kept topped up with IV antifungals and antibiotics.

Spent the afternoon watching unlikely transformation videos on you tube - guys that have gone from being giant lardy bastards to super buff in 100 days hmmmm. They are quite motivational but I'm not sure that they're very realistic and none of them are aged 52!  I have however decided that the fightback starts here - I need to stop putting off getting fit again and will go at it when I get out. I'm not going to go silly buggers because I know that I'm starting off from a fairly feeble condition when compared with where I used to be, but I can stop eating so much crap and start with small amounts of cardio and weights, building incrementally.

Had an eye examination yesterday as my eyes have been inflamed and itchy for quite a while, the chap did what he could on a preliminary look, gave me some drops but has recommended that I get  full scan done which will be happening over the coming week or so. Luckily its an out patient appointment so it won't keep me in.

Great news! -  docs popped in for a chat and barring anything silly happening, I should be discharged on Friday. Can't wait - in my head I'm already kicking my way through the litter walking up the road to Denmark Hill Station to catch 52 minutes past train and starting my journey back to the luvverly countryside.

T + 475. What're you looking at?

09/06/2014 3am awake yet again...

Something funny went on with the blog yesterday, normally I'd expect to see between 35 to 50 page views per day - but for some reason it got 316 views which has pushed the all time page figures to over 10,000 very gratifying - but equally confusing - must've been a veeeeery slow news day out there in the world.

Watching a show on Channel 4 earlier about a group of 5 people with terminal diseases who are brought to live together as a palliative care measure to talk to each other in a way that (it seemed to me) non-terminals are unable to grasp. Although now I would no longer in a million years class myself as being at risk, I could totally empathise with the pragmatism and gallows humour shown and recognise so clearly the 'stricken with indigestion' looks that appear on the faces of healthy people when you make a poor taste joke about dying or falling off your perch. It is a very special very intense show called 'My Last Summer' and I challenge you to watch it without being deeply moved, I was damp eyed throughout - look on 4OD.

One of the guys on this programme came out with something that made me roar with laughter saying 'You know you're in deep shit when the people you're seeing at the hospital stop being called Doctor So and So and start being called Mister This or Professor That' - so, so true.

Angels One Five Binky

The reason I mention this is that I had a Skype chat with Jeannette the other night and she filled me in on a few things that happened early last year after my transplant. There was a period of about a week when I was a bit fuzzy about what had been going on and thought I'd just been kept doped out of my head, turns out I was actually a bit ill and at times marginal. At first they thought I had a brain bleed and rushed me off for a scan then my temp went up to barbecue levels and everything got a bit serious. Thinking back on it, this may have been when the team resorted to Pethidine and Ambisome- I was blissfully unaware of all these shenanigans until a couple of days ago. Just had a look back through the entries and I think it must have been at the time of the entry titled T + 20 Jurassic Pork.

I finally got round to doing my no make up selfie so that you can see my lovely pork pie steroid face - enjoy.

Veins are still not good,  they've had to start trying smaller needles on me as its getting tricky to get the canulla in and my arms are starting to look pretty beaten up and purple - we're back to using the backs of my hands now. I had to have one removed and reset earlier today as it was pooling magnesium under my skin which hurt like a motherfunster.  I s'pose ideally I should have stomped my foot last week and asked for a PICC line in my neck but what the hell if I'm out on Tuesday it won't matter.

Going to try for some sleep now...

T + 473. Hey there people I'm Bobby Brown...

06/06/2014 Friday

It looks like I'm going to be in here for a least another 4 days - blood tests show CMV reactivation so its back on the Valganciclo-alcopops for a few more days. On the plus side I've noticed that my Ciclosporin has been dropped by 25mg in the mornings so life isn't all shit sandwiches.

Sleep is still a very topsy turvy affair, it's coming up to 1am now and although my eyes feel like bullet holes I doubt I'll sleep for a good while yet. The problem with trying to catch up in the daytime is that even for an isolation ward this is quite a busy place - the nurses are in with meds every 3 hours or so and the orderlies do obs at 2-3 hour intervals. Add on to that the fact that most of the IV feeds last an hour, at which point the pump alarms and I'm not much starved of company for long.

I'm having a toot on the nebulizer just to open up those dilated bronchioles, I even experimented with the oxygen tap for a while for a bit of a dizzy buzz - it certainly makes the chest feel lighter and it's great to be able to take huge gasping unconstricted breaths again. The team here have stopped with the warfarin jabs to my stomach as my platelet count has dipped  - due to the ganciclovir used to treat CMV, which means DVT stockings again. Emma the nurse on duty came to measure me up and I was surprised and perturbed to learn that my calves have got even smaller since I was last in here - I mean Jesus how skinny can a pair of legs get?

Jeannette got back from Aberdeen tonight (business) and tells me that the tree surgeon has finally been to get rid of a huge half dead cherry tree from the bottom of our garden, I had wanted the logs for our burner but the guy did it for such a low price that I thought WTF let him have them. J said it took a while for the penny to drop - she was looking down the garden and could see something was different - but couldn't put her finger on quite what. I'm looking forward to seeing the garden shaping up from Phil the garderner's good work and hoping that it has opened up our lovely view across the fields again. Have to admit it was getting to me a bit seeing the garden fallow and not feeling well enough to maintain it. The plan is for Phil to get it back on an even keel at which point I can take over the day to day up keep - he's not cheap but he works bloody hard.

Jeannette has finally conceded that we can also get rid of the pikey monstrosity that is the 10' trampoline at the bottom of the garden which currently serves as the repository for all the crap pumped out by birds that feed in the elderflower tree growing above it. It will be a true labour of love for me to dismantle the bloody thing and ship it to the dump in the disco. To give you an idea of the size - I anticipate at least two trips even with the back seats of the Land Rover down.

Next day...5am 07/06/2014 Saturday

Slept for about 3 hours, woke to peruse the papers online and start replenishing coffee levels.By 6.30am I felt like a rally car in a pitstop - one nurse and two orderlies in attendance, the nurse hooking me up to the first drip feed of the day one of the others taking obs and the third handing out my meds. Kudos NHS not sure where else in the world this would happen - unless you are obscenely wealthy.

My Ma visited this afternoon with a fresh stock of clothes and consumables, we had a couple of hours of easy chin wagging and catch up...which was nice.

Next day...3am 08/06/2014

Skyped Jeannette today and have more news of family slapstick whilst I've been in here. Our son Milo is now four and a half years old - I normally fight a bit shy of being one of those parents that ascribes supernatural powers to their pre-school children when discussing them with others - ie Jocasta is just sooooooo emotionally intelligent and loves Jeannette Winterson,  Barnaby will be a natural sportsman - has a great seat and plays Mah Jongg at day nursery etc because I think they are children, not fucking Top Trumps playing cards.

However in this particular instance I have no issue with ascribing Milo with the superpower of  gigantic arsehole stubborness. In any given discussion he will instinctively adopt a contrary and opposite position to that expressed by you even if it is to his own personal detriment - I fear we've bred a budding Union convenor - sometimes it's just too easy to screw with him;

Me: 'It's coco-pops for breakfast'
Milo: 'I don't like coco-pops'
Me: 'Oh that's all right - I just looked and we've run out'
Milo:<lip out> 'I want coco-pops for breakfast'
Me: <flourishing bowl from behind back> 'Here you go Ghandi  - eat these'

Through bitter experience (it can be very self demeaning spending time bickering with a 4 y/o and losing) I have learnt that it's often so much easier to remove the element of choice or free will when dealing with him, so the ideal coco-pops scenario would involve no prior discussion or interaction, you just stick the bowl under his nose and put the spoon in his hand - providing no means of  creating ammunition or for him to grasp a hand hold on a nerve to start shredding.

Milo and Wellie - in happier times before 'Pissgate'

The scene - Jeannette and Milo in the garden, Jeannette is hanging washing on the rotating carousel laundry dryer, Wellington our black labrador is spinning around the garden enjoying himself, Milo is hanging out being Milo.

Milo: Mummy I need a wee
Mum: Go indoors then baby
Milo: No I need a wee now
(the nearest loo is about 10 paces away)
Mum: So go to the loo then
Milo: I'm going to have a wee here.

At which point he drops his trousers and proceeds to pee over the vertical metal post of the carousel laundry dryer. I think it was from this point onwards that he became a marked man - I mean baby.
In the meantime Jeannette, I imagine with hands full of pegs and washing, watches with mild horror as Wellington belts up the garden, makes a quick assessment of the situation and decides that Milo is coming on all dominant and alpha dog by over-spraying one of  his (Wellington's) scent markers - a situation that needs remedying. He raises his leg and liberally hoses both Milo and the post with a stream of very strong yellow dog piss.

Well apparently from the screams you would have thought that Milo was being torn apart by weasels, Wellie carried on unperturbed until he was sure that his turf was properly marked and then trotted off back down the garden. Milo sadly learnt nothing from this experience- the first comment out of his mouth when I got on skype to the family this evening was a gleeful - 'Daddy I smell of wee!'

I think he was off to be bathed in tomato juice...

T + 470 Panic in Detroit - it's Robocrap.

Well sitting here in my Spitfire pilot outfit sucking on the old Ricola nebulizer - thought I might as well update.

Haemoglobin finally stayed up at 10 today so off across the ghetto to Guys for another photo-pheresis (PP) session. Transport did not screw up today and were only an hour late. The driver told me that they have 90 minute window on times quoted so I'll have to factor that in next time. Only a half hour wait for the lift back so none too shabby all considered.

It was plain to me earlier this week that my blood content had dipped, usually it’s a rich ruby red colour (when goodish) but looking at it going through the plastic tubes it looked more like raspberry juice. I asked one of the nurses to take some pics at Guys today to better illustrate what happens at PP. I've already put the pics up on Facebook, but for those of you who can't see my page I've reposted below.

The first stage is when a dirty big needle is inserted in the biggest vein of each forearm - the right hand tube feeds into a centrifuge, you can see it just below the monitor screen, which spins off the White Blood Cells (WBC) from the rest of the blood content. This takes between 60-80 minutes depending on levels of hydration and vein condition. The optimum extraction rate is 50ml per minute and 90% of the time I’m up to this – you really need to plough through the liquids the day before to boost hydration. I've got two decent veins left on the inside fleshy part of each elbow which I save for PP, because if they put the #14 needles in smaller veins, an element of discomfort is experienced (hurts like fuck).
Being a typical male twat, if I'm hooked up at the same time as a fellow patient, it's instantly a competition to see who can finish first. Fun comes in small packages these days...

At the end of stage one the PP machine will have processed approx 1500ml of blood yielding about 300-350ml of WBC, you can see the bags at bottom left and right. It is at this point the nurse injects a photo-sensitizing solution into the WBC bag (cue to don sunglasses) before it is fed into the long curved module at bottom centre of the unit.

Look at all my lovely GORE!

This contains a clear plastic maze a bit like an ant farm with UV lights on either side through which the blood is fed to be exposed. The thinking behind this is that the T-cell component in the WBC is reduced by being damaged or killed during this procedure. T-cells are the aggressive little bastards that have been causing GVHD in various parts of my anatomy. They do apparently calm down and assimilate of their own accord eventually, but the timescale on this is uncertain and PP is seen as a good way to accelerate this. Once the UV exposure is complete, both bags are transfused back into the left arm which takes about 15-20 minutes. I’m scheduled to be at this twice a week every other fortnight so it’s fingers crossed for some meaningful change soon. I'm pretty sure my mouth is improving incrementally with each visit. The only real downside I've experienced from these sessions is fatigue for a couple days after.

In spite of leaving details with all and sundry of my meal choice if I was not back in time to order it, this somehow slipped everybody's minds and the stuff that they had in reserve was grey mince school dinner style or beef stew and dumplings. Those of you who read the blog last year when I was in for the transplant may remember that I found a sodding toenail in my mouth when I was halfway through my last KCH beef stew, so that's coming nowhere near me for starters.

Fortunately a new franchise has opened in one of the restaurants so I packed down a hot Steak and Monterey Jack Sub like a python hoovering up a puppy and then bought a bunch of crap from the other hospital shop, lovely what you can get away with eating when you look like shit anyway.

T + 468. What a thoroughly decent chap.

01/06/2014

Haemoglobin: 8.0
WBC:              5.94
Platelets:        102
Neutrophylls: 5-3


Weight: 69.1kg

Well I suppose it had to happen sooner or later, after nigh on 6 years of stout, juicy and faithful service my veins have finally gone on the blink. Watching the nurses trying to canulate me over the past couple of days has been like watching someone pushing a bit of wet spaghetti around with matchstick. The little fuckers (the veins - not the nurses) will not stay still and most times when a needle does go in it exits the other side of the veins and blows it in a ball of blood because they're so squirmy. Anyway they ended up getting a registrar in to do it  -she was pretty impressive and soon got one jacked into the back of my left hand, so at least now I can do 'The Glove' as opposed to 'The Hitler' in the shower.

I've got two decent spots left on my arms, on the inside fleshy part of each elbow are two good veins which I save for the photo-pheresis (ECP) needles which are quite large.  They could use smaller needles but it makes the white-cell harvest procedure take much longer so I usually tell them to go with the bigguns to get it over with quicker.
Talking of which, I had another session of ECP over at Guys today and after the fiasco with the Kings College Transport system from the last time I was in, I decided to play it clever and tell them that my appointment was at 11am rather than the actual time of 12.30 in the hope that I would get there on time. My ruse was a stunning success and the porter arrived promptly at 14.30hrs to drive me twenty minutes to Guys. I could have fucking pogo-sticked there and back twice in the time it took them to get their act together.

So after the ECP (17.30 hrs by this time) I was in no mood for more of the same, so I went  into the despatch office at Guys (attracting the usual funny looks due to the  surgical mask and wearing sunglasses indoors) which was crammed to the gills with ill looking people waiting for transport and asked what the waiting time was. Upon being told it was 90 minutes, I asked them to cancel my booking and advised that I'd make my own way back. I figured a 5 minute walk to London Bridge Station then hop on a metro to Denmark Hill and bish bosh you're there. I'd just turned to walk out when the kid on the desk called across the crowded room that my ride had just pulled up outside. Cue virtually the whole room looking daggers at me because they'd obviously been waiting ages and had all seen me mince in. It probably looked as though I were some sharp elbowed self entitled twat who'd bullied my way into the queue.

Fuck'em I figure I'm owed a decent break with the transport for once.

Postscript: I've since found out that you can't get to Denmark Hill direct from London Bridge.

This entry demands a bit of a precis so bear with it.

This was not originally going to make the blog but I think it's just too funny and bizarre not to include even though I may have trouble making direct eye contact with some of  my more casual or formal acquaintances in future after they have read it. Apologies in advance to close family and friends for the 'too much information element' but if this is going to be a transparent record of my recovery then I think it should be told plus it's fucking hilarious.

50+ years on the planet, extensive travel and experimentation with many and varied consumables you would have thought that there's not much left to see that I would find genuinely jaw droppingly surprising. But here goes.

I woke up in bed the other morning with a black chap.

Before you jump to any conclusions I don't mean chap as in another person, I mean chap as in, you know a man's 'chap'. After my initial shock and whimpers I realised that it's another symptom of low platelets and all I can think of is that I must have dragged myself across the bed (a la dog scratching its' arse style) to get up and caught said chap beneath me in my pyjama trousers which caused the bruising and rather impressive change in hue. Totally harmless but as I say a bit of an eye opener - just for a second opinion I showed the (male) consultant and registrar when they did their rounds and they cleared the room faster than if I'd just asked permission to fart in their pockets.

It's rather like when you see those terrible pictures of  OAPs who have been beaten up by some little toerag for 50p. Blood content quality declines with age and platelet levels drop leading to less clotting which is why old people always end up with the very black purpley bruises - not that I'm saying my chap resembles an 80 year old mugging victim, although on the other hand....hmmmmm.

I will be keeping a keen eye on things over the coming days as I'm expecting the bruising to start fading first to a rainbow hue - which might allow me to set up a pay per view web page for the discerning bachelor and then to a pale yellow at which point I expect it to resemble the top half of a slice of battenburg cake.

BTW platelets and Hb are now at much more acceptable levels as I have had 3 units of blood since the chap squishing.

T + 466.Sorry about the smell nurse.

Well treatment started on Friday night - had a bit of a torrid session getting a canulla fitted, as for some reason the nurses on this side of the hospital aren't so keen on using the back of the hands as an insertion point and it took 3 attempts by two different nurses and a bit of gore before I was plumbed in.So for the moment I'm back to 'Seig Heiling' in the shower to keep it dry. The room I'm in this time round varies a bit from previous accommodation in that it has a wet room with a fitted chair that folds out from the wall, rather than a shower cubicle.

At first glance this seemed like a great idea, apart from the fact that the floor is a bit bit wonky and 'Wet Room' should really be extended to mean the bedroom as well - it seeps out under the door and puddles across the floor. First time I nearly went A over T as I came out - so now I put a towel sausage across the bottom of the bathroom door.

I'm being given 2 different types of antibiotics, one of which is jacked straight into the canulla (Meropenin) the other via IV is Clarythromycin which takes about an hour at a time - I'm also getting saline drips and magnesium (for the claw). The docs believe that although the chest infection is viral, it is also overlaid with something bacterial making the phlegm green rather than clear- oh and enjoy your breakfast.

Have also been put on 6 hourly nebulisers - you wear a clear plastic mask and the good stuff is converted from a clear liquid into a mist like vapour which you draw in as deeply as possible for about 30 minutes. Works great - and I walk around the room singing 'Ricola' afterwards. Downside?  - well it gives you the demon shakes for a couple of hours and reminds me a bit of Monday mornings in my bad old drinking days when it took two hands to raise a cup of coffee to my mouth so that I didn't end up wearing it.

Had a chat with Jeannette this morning and she told me that she nearly pooed herself earlier when a field mouse went scuttling across our kitchen floor. Fair play to her though she caught and repatriated it and even said how cute it was close up. Before you start judging we are not some scumbag family living amidst a maze of empty take away and pizza boxes - it's just part of living in a rural location.

Eating OK in here so far, breakfast is alright - Special K and a couple of croissant and orange juice, I try to stick with something chicken based for the other meals either from the standard or hala/kosher menus- h/k menu is generally pretty reliable, but it let me down the other day when I made the mistake of going for the 'Cod goujons served with croquet potatoes and creamed spinach'. Sounds good right?

Well the halal/kosher meals are prepacked like TV dinners and are nuked on the ward kitchen before being served. I dunno who was in charge of the microwave that day - I have an inkling it may have been Chuck Norris. The food was so hot when it arrived that it was almost glowing like lava and when I eventually got the plastic knickers off the prepack lets say I was less than enthused. The croquets were were little spuddy marbles, I think I last saw the spinach emerging from the mouth of a CGI demon on Ghostbusters and the frigging goujons were like chicken bones in soggy batter. It was very disappointing and the first truly inedible meal I've been served since coming here. Needless to say I was off to the hospital shop for sandwiches, fruit and yoghurt pretty soon after that.

Stupidly, I'm still doing the whole sadomasochistic trip by eating prawn cocktail and ridged steak crisps on a regular basis even though I still have extensive GVHD ulcers in my mouth running along both cheeks and around the inside of my lips. It's a pretty close run thing thing on the pleasure/pain stakes  - I'd put it at 51% to 49% and worth every agonising mouthful. That sounds a bit fetishistic reading it back...

Anyway during the course of this pervery I came up with a great green idea to help prevent bank robberies. Whatever it is that Mcoys put on their steak flavoured ridge crisps - the smell of the stuff is just frigging impossible to get off. I got fed up with smelling like a 21 day aged chunk of biltong - even after using sterile alcohol wipes, multiple sessions of hand washing and two showers - in the end the only fix was spraying my hands with underarm deodorant which is marginally better but not much - ended up smelling like a freshly washed Aberdeen Angus. Back to the idea though - put a steak crisp flavour bomb in the stolen money duffle bag and there's no way that shit is coming off. Then you just unleash the sniffer dogs and hey presto job done.

Granted a couple of innocent crisp munching fatties might get mauled on the way but as I can now testify from having a roll of fat across my gut, I cant even feel injections there any more so a couple of dogbites should be no problem with the added bonus that the cops are practically guaranteed to get the criminal.

Dunno how I do it I could come up with stuff like this all day reckon I should start up a think tank or a consultancy.