T + 524. (sings) there's a hole in my forearm - dear Liza, dear Liza.

Been off predisnolone for about 10-12 days now and I'm pretty sure that I can see physical changes already. The hump on the back of my neck is disappearing to the point where I am able to feel the top of my spine again. Best of all my face is losing the rigid water melon-like structure - and strange to say, but I'm actually quite pleased to be able to see wrinkles again as opposed to the stretched drumskin fizzog that I've had up until now.

Guys Hospital for more ECP today - could only manage 35ml per minute peak blood flow as opposed to 50ml, guess I wasn't hydrated enough. The net effect of this was that the process took about 25 minutes longer than usual which put me in jeopardy of missing my once an hour train home. So I obviously started flapping and when the second needle was removed from my left arm after the nuked white blood cells were returned to me I applied quick pressure to the bandage to stop the bleeding, the nurse removed the tourniquet and I got a plaster whacked over the needle hole yelled my goodbyes and dashed out down to the lift to get to London Bridge Station.

Jumped into the lift on the fourth floor which was pretty crowded and by this time had about 18 minutes to make it to my train loads of time to spare. It was not long before I noticed that I was attracting some worried looking stares from the rest of the lift users - well not so much me as the arm of my jacket. I looked down at my left arm to see the jacket was completely sodden with blood from the elbow down and that a healthy flow of blood was running down my hand over my knuckles and pooling on the lift floor. I gingerly slid my jacket off and wrapped my arm up in it - things were starting to look a little Reservoir Dogs by now, and reassured my fleeing co-travellers that it wasn't as bad as it looked.

4th floor please

Had to go all the way down to the ground floor then took the lift by myself (surprise surprise) back up to the fourth to the ECP unit leaving a polka dot trail on the floor all the way behind me. The nurses got a tourniquet on my upper arm, a thick bandage and wadding to stop the flow and had me cleaned up and on my way within about 6 to 8 minutes. I felt guilty about all the clearing up I'd created for them to do, but they wouldn't hear of me helping. If that's what 35ml a minute looks like I dread to think what a fully hydrated flow would have done...

 I'd pretty much written off catching the 14.23 by this point so took a leisurely stroll over to the station expecting an hours wait. Arrived at platform 5 at 14.22 - WTF I could actually still make this, - and set off at my best swift walk up the ramp and along the platform (running still being out of the question) and bugger me sideways if I didn't actually catch a break at London Bridge for once and made the train by about 3 seconds. As I have probably mentioned before, I realise that my horizons may have narrowed somewhat over the past 18 months, but I'm still chalking this one down as a big fucking win in my book.

 On the train I was wearing dark glasses due to the photosensitive chemicals in my blood from the ECP and it was amusing to catch the worried looks on the faces of my co-travellers on the way home, seeing as I couldn't wear my bloody jacket over my t-shirt, my heavily bandaged arms were on show - with the semi tightened tourniquet still in place - I'm not sure what I would have thought had I been in their shoes - a junkie on summer holibobs maybe?- after all it was the Hastings train and the town does have a bit of a rep for white.

So - more of the same at Guys tomorrow though hopefully without the theatrics.

T + 522 Time for a massive dump

Well the giant clear out has started. We've been here seven years and although I thought we were fairly good at keeping the place moderately tidy, we still appear to have accumulated a massive amount of crap. Hands up here its partly me, I have a huge hoard of Mojo and Uncut music magazines dating back at least 14 years. I've hung onto them because they were going to be in a library in my man cave that we never quite got round to building in the garden.On top of that I have kept every games console, complete with games, that I have ever owned going back to the N64, also supposedly destined for the man cave.

I've started dismantling the eyesore of a trampoline that obscures part of our lovely view at the bottom of the garden, a true labour of love believe me and it will end its' life at the dump tout suite. Have also contacted a 'dent doctor' to come round and tart up up a couple of scuffs on the Land Rover, one on the front fender made by me and the other made by some fucker when I left the car parked up in Sainsburys car park in Tonbridge - no note, nothing. Bastard.

We've got a brilliant gym grade cross trainer that hasn't seen use for a year and now makes a pretty good coat stand. it cost us £800 new and I'm on the horns of a dilemma on whether to flog it, store it here or ship it to Aus. Between us we've accumulated vast numbers of books and Cds all of which can go to storage and on top of that our cellar is a world unto itself. Seeing as we don't have a garage or much loft space, the cellar has become the repository for all the crap that would normally reside in those spaces. Today I sent 60 empty jam jars to recycling and there are still untold half full tins of varnish, paint and woodstain that need to go next.

I already had the costume

Got the order in with Amazon for cardboard boxes, bubble wrap and parcel tape and have sourced a storage unit about 10 minutes down the road between Robertsbridge and Battle which is bloody handy.
I also found on Amazon - (for anybody like me that has GVHD of the eyes) these gel filled eye masks that you put in the fridge and then wear a la Lone Ranger style. Very soothing and reduces a lot of the soreness around the eye sockets and inflammation of the eyes great for first thing in the morning or for scratchy eyeballs last thing at night. Highly recommended.

Looks like I (OK my Doctors) may have managed to avert me having another lengthy stay in hospital by early intervention re the baby cough and cold that I picked up from Milo via playschool. Whereas he got rid of it in a couple of days, inoffensive little bugs like this have proven sufficient to put me in hospital on an inhaler for weeks at a time. A weeks' course of antibiotics seems to have done the trick. So although I may be a little slow and stubborn, I have come round to the idea that I'm no longer rufty tufty and need to address every little thing like this as soon as I become aware.

Wooo- ended up going around Wakefield Place Gardens yesterday, woefully ill equipped for the long walk. Milo in crocs Jeannette in flats and me in thin soled deck shoes. The mile and a bit walk downhill to the water gardens was all well and good but the return journey uphill just about finished me off. I was huffing and puffing from bench to bench like an 80 year old. Full credit to Milo though, he got about four fifths of the way round before he started to kick up. Thought I was recovered this morning so took the dog for walkies and half way round turned into Douglas Bader  - right leg seized up like it was made of tin.

T + 521. It's fucken' hot and sticky down there.

Well Jeannette has been in Australia for 11 days now, has finished in Cairns and is now back in Sydney - sod's law that she leaves the country to go to their winter just as we hit a heatwave here. She's due back on Friday morning.  Just heard from her this morning that our 457 working visas have been approved, so it's all systems go on tarting up the house for rental getting our stuff put into storage and a hundred other thing to sort. Wellie has just had his rabies jab and there is a waiting period of 180 days to ensure that it has been effective which means we'll have to leave him here in kennels until early next year before shipping him out to Aus.

There's a few bits of tarting up I need to do to the house - the walls need painting to cover up Milo's handprints and the marks that our smeggy dog has left from shaking himself dry in the house also the work surfaces in the kitchen need stripping off and re-oiling. Going to need to get the Disco cleaned up in order to sell it as contrary to what we originally thought, it's not going to be worth our while shipping a car out there as it's a huge amount of hassle to square it away with the Aus government and we'd have to ship it back at the end of our stay anyway, by which time it will be a fourteen year old car and worth fuck all. I'll probably go for a Holden or  Mitsubishi pick-up (a fucken' Ute mate) when we get out there.

I've still got the mouth ulcers and raw eyes from GVHD - it's not getting any better, but on the flip side it's not getting any worse either. I'll be having ECP right up until the time we go to Aus and it remains to be seen whether I'll actually be able to continue the treatment in Sydney, - it's available there but I dunno if it falls within the reciprocal care arrangement. The biggest relief was finding out that my meds are covered as we wouldn't be able to afford to pay retail for them, it's about £1200 a month! I've been advised to take a 3 month supply of drugs out with me to cover the period it will take for Medicare and the PBS to get me on the books re prescriptions.

Proud pumpkin headed father and Callum the Graduate

Had a fantastic day on Tuesday drove up to Nottingham with my eldest son's mum to attend Callum's graduation ceremony. So very chuffed for him - the degrees were handed out in about an hour - but we then had to sit through a further 90 minutes of speeches from boring old farts who obviously did not have the gift of writing or delivering an amusing or engaging speech - it was pure fucking torture. at one point Addie (Callum's mum) looked at me and mouthed 'Make it end - kill me now'. It really was that rough.

Chancellor and Vice Chancellor yesterday

I've restarted watching that show about the people with terminal cancer - 'My Last Summer' - 5 people brought together to spend their last months sharing what its like to be living on borrowed time. Three of the five have so far succumbed - and it's been an incredibly poignant and  moving show to watch. I would be in floods of tears if it weren't for the GVHD in my eyes which means I can't actually cry! Parts of the show that really resonates with me are the before and after shots of  one of the survivors Andy - pictures of him on his wedding day looking fit and happy then cut to now, with a steroid bloated face and bags under eyes - going in and out of hospital constantly fighting every little cough and cold that comes his way. It's a conceit for me to make any form of comparison - but the meds and the mode of existence are so similar that I can't help it.

T + 508. Concerning Tree Fu Tom's Nutsack

I don't know if any other post BMT patients have had any similar experiences, but since starting on immuno-suppressant medication about 18 months ago I have found that I get very vivid dreams. Our day fairly often starts with me relating the previous nights increasingly bizarre dreams to Jeannette before they are wiped from my memory - which normally happens within, I dunno 15 minutes to half an hour after waking up.

Although I can't recall any specifics now, there are common themes that regularly crop up - I'm fairly often angry or violent and spend quite a lot of time punching people out which is very satisfying, or I'll be back at work or involved in some kind of employment and the location is very often London, either in the street or in an underground or railway station which can only be a residual hangover from the commute and years spent working in town. One worrying scenario that I'm always pleased to wake up from is that I look down at my hand and find that I've holding a glass of booze and have started drinking again - even in the dream I feel incredibly disappointed about this - and the sense of relief that I feel when I realise that it was only a dream is just like being given a piece of incredible good news.

Depending on the kind of reading it makes I may start recording some of the dreams in this blog - because to be honest some of the situations that my subconscious contrives are so bloody bizarre that I have to believe that they can only be caused by some of the meds I'm on crossing the blood/brain barrier and fucking with my synapses while I'm fast a kip.

I had a consult up at Kings earlier this week, my meds are gradually being reduced; Budesonide (for IBS) is now down from three times a day to twice, I haven't had any symptoms or GI/Bowel trouble for a couple of months now but appreciate that  reductions in medication need to happen gradually so as not to throw the body out of its stable state. Prednisone is also on the way out which I am pleased about - I've been told that it can take anything up to 18 months to shed the steroid bloat, but I kinda think I can see a change already although it could just be wishful thinking! Eyes and mouth both stable, which is not to say that things are good, they just haven't got worse - eating is not a problem but I wouldn't risk anything spicy, chilified,  mouthwash or even normal toothpaste at the moment - and carbonated drinks are borderline.

Appointments at Kings College are pretty much swings and roundabouts, a lot of the time I manage to get seen at the beginning of the session as my consultations tend to be fairly short ie 30-40 minutes, I'm fairly pragmatic about my situation and go in knowing what I want to ask and have all my meds and recent history at the ready so there's no faffing about. If you get stuck in the waiting room you find that (although I don't blame them for it) some people tend to use these consultations as therapy sessions and they're in there for fucking ages. This week I got stuck in one such situation. I left home at 10am arrived early, had my bloods done by 12.30 and was bright eyed and perky tailed in the waiting room for 1.30pm hoping for a quick base touching session with the consultant. Which is where I stayed for the next three and a half hours (the waiting room I mean). Got home at 8pm too tired to cook or eat so just chugged down a protein shake and stumbled up to bed to watch a DVD with J before crashing.

A little late to the party, we've started on Series 1 of  'Breaking Bad' and can completely see what all the fuss is about - plus all of the diagnosis and chemo scenes will be achingly familiar to anyone that has been there. The story telling totally hooks you in, in much the same way as 'The Wire' did a few years ago and even this early on I can understand why people are raving about it, TV like this is rare.

Apologies if you've already heard this tale through my FB page, - but there is an update on the Milo front.

'He's called SCROTUM!'

Jeannette walked in to the lounge the other afternoon to find him engrossed in a show called Tree Fu Tom which he loves. She tried to get him talking about it and asked the name of of a character on screen - he mumbled something that she was unable to hear clearly, so she asked him to repeat it -

'Mummy I just told you, - he's called SCROTUM!'

Of course Jeannette dissolved on the spot and called me - we spent the next ten minutes asking him to name the character and pissing ourselves with laughter. All this time he was getting increasingly irate until it got to the point where he refused to discuss the matter any further which is a shame because it would have been nice to wheel out that particular party trick in front of guests. Oh well it was fun while it lasted and BTW I had a look on IMDB and character is actually called Squirmtum...

T + 502. A twatting we shall go.

Good second photo-pheresis session at Guys on Friday, a total of 1 hr 20 mins start to finish -  fastest ever. I have a correction to make on previous blog entries. I didn't know what the full name and acronyms were for photo-pheresis so - I made one up (PPI). The actual full name is Extra-Corporeal Photo-Pheresis (ECP), and is derived from the Albanian meaning 'Big Fuck Off Needles'. No - obviously I jest - a quick butchers at google suggests it means something like 'Out of body light withdrawal' it's a bit like how they name plants - a mish-mosh of Latin and Greek combined to make sure it sounds poncy enough so that we plebs realise it's all clever and SCIENCE.

I had to reschedule Thursday's ECP session as Milo was a bit rough with a bad cough and cold so I kept him home from school for the day - he was only due to do a half day anyway as his school has broken up for the summer now. We (me, Milo and Wellington) went for an hours walk around one of our local footpaths through the fields really beautiful this time of year (actually any time of year)  - I had to find Milo the obligatory 'whacking stick' to carry for thrashing at the grass and anything else in his path. It's a bit of an ordeal because he's not exactly ninja as far as stick craft goes, so there's quite a lot of friendly fire and self inflicted wounds going on.

At the halfway point near the 'Witches Cottage'

Every 5 minutes or so I hear an 'Ow,ow,ow Daddy!'
I say 'What?'
He says 'I hurt my leg with my stick'
I say 'Well throw it away then'
He says 'No - I need it for my broken leg'

So the whacking stick becomes a makeshift walking stick until the leg has healed, then it's as you were for a further 5 minutes until he twats himself around the head or catches me one in the back and the whole rigmarole starts all over again. We sneaked past the Witches Cottage to ensure that she didn't come out and grab us - because apparently not only would we be turned into frogs if caught, but we'd also end up in the giant cooking pot. I asked why she'd need a giant cooking pot if we'd been shrunk to the size of frogs - and was given the kind of look I imagine Nigel Farage would have got on the Balcombe fracking frontline.  We also stopped in one of the fields to watch a tractor lay an egg (baling). Milo's Grandma came down about 11 am and took him on the train down to Hastings for a bit of R'n'R and I'm advised a lovely time was had by all.

Nearly home - Wellington is looking for a likely spot for a nice crap in the Churchyard.

At Guys on Friday I was on a machine next to a fellow patient in their late 20's or early 30's and sadly only got talking to them for the last 15 minutes or so as I'd had my ipod on which was a shame. This person was transplanted at the end of 2012, a couple of months before me and since that time had only spent a total of only 7 weeks out of hospital. They've had severe GVHD in virtually every major organ as well as bacterial and fungal infections, one of which has eaten away the inside of their nasal cavity. Quite inspirational - still a very upbeat and chatty person even though very frail and unable to walk unaided and pretty much wheelchair bound at the moment. We compared meds and horror stories (as you do) and had a really good chat - I hope to get the opportunity to meet them again.

I realise now that I needed to meet this person and hear their story to give me a shot of reality and perspective on where I am now and how fortunate I have been. I was ape-shit stir crazy and moaning after spells of 7 and 3 weeks in hospital - let alone 14 months. Red eyes, fatigue and a sore mouth now seem like a small price to pay when compared to the options of a) forgoing a transplant - ie a slow and debilitating fade, or
b) experiencing true full-blown chronic GVHD in which the body crashes from one crisis to the next in a spiral of diminishing returns.

The fact that I'm up and about and contemplating moving on with life is a million miles away from the experience of some other BMT recipients and my heart goes out to them all - having travelled the rocky road of the transplant only to find the next stage even tougher - well I can only say that it's bastard unfair that shit deals like this should happen to such brave people.

T + 499 Ah Breakfasts in the Prednizone - best meals of the day.

Right 2nd July 2014 been awake since 1am its now 3am - having a bit of sleepless-ness-ness-ness so I thought I may as well use the time to update you bunch of masochists on the tale of grief and woe that is my shit life.

Actually its fairly good news. Since getting out of Kings a couple of weeks back I've avoided any further infections and am starting to get some stamina back and also some strength in my legs. I can get up all the stairs in our house now without using the bannister rails to pull myself up and am walking our dog Wellie for between 20 to 35 minutes per day - I'm not a big fan of hills just yet but that will come. CMV is back under control and so I'm off the Valganciclovir which should help get my blood levels off the special bus.

Appetite is good, here are my two breakfasts;

Monday to Sunday pills and lucky dip box for slow days

Nom - that is all

I did have a moment of laugh out loud self realisation the other morning when I tried to start climbing the stairs by pushing off with my back leg to spring up and land on the second stair, only to find that my ham strings are so frigging atrophied that my body went for it but my legs stayed where they were - so it looked like I was doing that awkward hand on hips Status Quo dance so beloved of denim waistcoat people in the seventies. Really quite bizarre - my mind was convinced that I would hop effortlessly up two stairs - but my legs were like 'Don't be foolhardy man! This is just pure insanity!'. I have to admit to feeling a little let down by the lack of moral fibre shown by my calves and thighs - it's not as though I was asking them to go fucking base jumping or anything...

Eyes and mouth are a bit problematic with GVHD (Graft Versus Host Disease), I'm still doing steroid and anaesthetic mouthwashes 3 or 4 times a day and using lubricating eye-drops for little things like, you know blinking and shit. Of the two issues I think its my eyes that are of greater personal concern. I had a laser contour scan done at Kings College last week and was relieved to be advised that the wobbly line issue that I have with my left eye is down to a build up of fluid at the rear of the eye which has thrown my focus out very slightly. The result is that if I look at something using just my left eye all straight or parallel lines have rather trippy wobbly edges. When it first happened I thought maybe it was flashback time from all the Pink Panthers and Microdot acid we used to take in the eighties, but have since been advised that it's a side effect of the steroid predisone and will fade as my dosage is titrated down. I also did another lung function test and came through that OK which was nice - considering the state I was in when admitted.

Despite being advised (and having counselled others) not to use the internet for medical research, I have been looking at GVHD pages on facebook and there are some horror stories out there, mainly from the US, where people have suffered ocular GVHD for decades resulting in ulcers on the eyeballs and permanent eyesight damage. I know because this film is all about me that this obviously isn't going to happen to the main character - but then again male pattern baldness wasn't on the cards as far as I was concerned either! My reading has thrown up a couple of useful tips though, one is that fish oil supplements are useful to assist in the production of tears to keep the eyes moist. The second is that in extremis if I can't start making tears again, there is a procedure available to cauterize the upper and lower tear ducts to divert the flow of mucus from the nasal passages to the tear ducts thus increasing lubrication to the eyes. I believe this is where the medical term 'Eye Bogey' originates.

There's a rather weird twist to the fact that when I was on the full blown steroid dosage of 60mg per day a couple of months ago, I was a very edgy weepy mess who could break into tears if half my chocolate digestive dunker fell in my tea but now you could nail one of my hands to a hot stove and I couldn't raise a single tear - although I'd probably ask you if the business with the nailing was strictly necessary.

Dosage of pred is down to 2.5mg every other day - I am feeling a little more sensitivity and pain from my mouth ulcers but its tolerable and worth it if I can start to get rid of my big fat pumpkin face and neck hump - both courtesy of steroid useage. On the subject, we had a barbecue at our house at the weekend and a bunch of my best mates from years back came over with their partners and kids. It was outstanding to see them all together again and over way too soon.

During the course of the afternoon my current resemblance to a character from the cartoon show Family Guy was raised - I naturally assumed it would be Quagmire due to his big fat head and jowly appearance (rather than him being sexually deranged) but  the jury was out on him or baby Stewie - so heads you win tails I lose really. The closest I can put it is to imagine Marlon Brando and not in his prime, I'm talking about the doughy faced 'Apocalypse Now' Marlon Brando - the guy must have been packing steroids for his features to have been that distorted. Bloody hell its 04:45 now - so time to try and grab an hour or so before the school run.

I will leave you however with the latest gem from our house homunculus Milo (aged 4 and a half).

Sitting out in the sun in the garden with him the other day;

He says 'Daddy what is the name of the insect that begins with a 'G' and lives in the garden in the trees and likes to eat wood?'
Me: (OK I can get this) 'Erm Gnat?'
Him: No
Me: 'Grasshopper?'
Him: 'No'
Cue another 5-10 minutes of thoughtful silences and increasingly desperate guessing on my part.
Me: 'Grub?' 'Gadfly?' - no and no
Me: 'OK I give up - what is it then?'

Him: 'It's ENVELOPE silly'