T + 654. Parental Neglect

Tonight's edition of crud4blud is brought to you by our sponsors Predisnolone and Sleeplessnessnessness.

Aaahh Predisnolone (aka Predisone aka Pred aka The Ellis-Bextorizer aka Spector's Fuzzy Wigs) what is there to say? Well thanks to you my mouth and eyes do not erupt into suppurating fountains of ulcerated pus - which I find is always nice, especially if you are expecting company - but equally, thanks to you I have very quickly developed a gut like a Kalahari Bushman and a face that is starting to look like I sleep with a shoe box face mask on at night. Also my testicles have grown to 3 times their normal size (OK, I made a  bit up there - we're not really expecting company...)

Spector's FuzzyWigs - just say 'No' kids!

Whilst it is a shame that I've ended up back on this gear again I can see the thinking behind it. There is a need now to break the cycle of immuno-suppression, CMV reactivation, CMV medication, falling blood levels etc etc. So my daily dosage of Ciclosporin  - the major supressant has been dropped by about a third to 100mg twice daily. The Pred (25mg alternate days) has been introduced to damp down any GVHD flare up that may occur and I suppose that the intention is to normalise me to this and gradually titrate my dosage down. Well here's to it - it would be nice to feel that I'm progressing in some way after struggling for so long to achieve a stable state.

In other news - we are all moved in to our new house in the North Western Sydney suburb of Rouse Hill (a microcosmic Milton Keynes) and at the very butt end of unpacking the 270 odd cardboard boxes that comprised our entire possessions from the UK. Hats off completely to the packers and shippers as the only breakages that have occurred so far have been blue on blue ie Jeannette and I merrily trashing glasses and plates with our ham fisted unpacking. The place is still in a bit of disarray but the next few weeks will see things settle as we adjust the layout to best suit the way we live. The weather (I know, typical Brit) has been extraordinary, hot and very humid in the am followed by insane downpours and thunderstorms in the pm - the amount of rain that has come down in the past 10 days is unbelievable by UK standards, but the land here is so parched that it just blots it up and blooms.

The local preschool has managed to shoe horn Milo in for a few more days - he definitely benefits from being around his own species as much as I benefit from the respite of having every single fucking action I take throughout the day being subject to continuous interrogation. He is all teed up for primary school in the new year and starts on Feb 2nd. We had a little bit of a surprise when it came to signing him up for the school - even though it is run by the NSW Government, as 457 visa holders we have to stump up $5k pa to pay for his education = so much for the reciprocal special Commonwealth arrangements.

My son also excelled himself recently on his second visit to the local GP. In order to comply with local health authority measures he had to have a general medical check up before his fifth birthday ears, eyes, nose, throat, joints, reflexes etc. It was all a bit rushed as he turned five years old on 7th December, so on the 6th we had him booked in for his MOT.

Now I don't know if other parents have experience of this, but when Milo is in just the company of one of us he is pretty amenable and well behaved - however get both parents together and furthermore have them actually talk to each other rather than gravitate around him like little cooing moons and you get Vern the Bastard coming through hard and fast.
His behaviour during the examination was just so bad that the GP was referring us to the NSW Gov website for children with behavioural problems by the end of the session - not only that but she was left with the impression that he is partially blind, spatially challenged and completely illiterate as he cannoned around the consulting room claiming that he couldn't even see the eye test chart let alone read the letters on it. Jeannette even jumped in at one point to indicate the letters he should read - Milo later claimed that he couldn't read them as he thought she wanted him to read the letters in the row below (which were of course covered by her finger). All this in spite of passing an eye test with flying colours when Jeannette had him tested 2 weeks befor leaving the UK. The more we tried to explain to the GP how uncharacteristic this behaviour was, the worse he got and you could see her forming the opinion that we'd been sitting in the car park outside before the appointment smoking crystal meth and feeding the boy cat food and e-numbers. Little Shitehawk.

It was only after we got home that I realised I should have said to the GP " He's only started acting like this since you gave him that Hepatitis B shot a couple of weeks ago" and then watched her expression.

T + 636. MEH This isn't as funny as I thought it would be.

25/11/2014 - sleeplessnessnessness...

Recovery - CMV appears stable, prophylactic Valganciclovir dose is holding it. Mouth ulcers tolerable and eyes liveable but still rissoles and I wear sunglasses in anything other than artificial light. No obvious ballooning from predisone yet, but it's early days Mr Pumpkin head is no doubt on his way, maybe just in time for Crimbo.

As previously mentioned we're not crazy about running the air conditioning in the apartment so tend to have the sliding doors to the balcony open save for on the absolute hottest of days. The park opposite is chocka with wildlife and the dawn chorus is a pretty raucous affair, kicking off at about 5am for about an hour and a half. My meds make me a very light sleeper so during the course of our stay I've come to know the various birdsongs pretty well and am now able to identify most of the birds that we get to hear regularly;

That's right it's Vince Cable

• Kookaburra (iconic and very distinctive - looks a bit like Vince Cable)
• White Cockatoo (vey, vey shouty in an Essex Bird way)

and then there are the lesser known varieties

• R2D2 Warbler (distinctive beepy tweetings)
• NSW Squeaky Trolley Finch (skreeek-skreeek-skreeek)
• NSW Dropped $50 Bill Seeker (similar to the Trolley Finch above , but where-where-where)
• The Snooze Button Bustard (falls silent if you throw a shoe at it)
• Postgate's Clangerbird (a bit Jethro Tull )
• Postgate's Lesser Respected Clangerbird (wanky jazz flute noodling starts early - puts me back to sleep)
• The Delbert Wilkin's OowaahOowaahKatanga Wagtail (distinctive)
• The Walnut Washboard Grater (dry rasping rhythmic call)
• The Nutsack Cheese Grater (high, piercing and frankly chilling)
• Farginelle's Hopping Natterjack (big feet - lives on hot tin rooves, farginelle!! - farginelle!!)

and I'm on the lookout for;

• The Quiet Silent Hush Thrush (hopefully a fuckload of them will move in and take over) 

These guys really go at it for a good hour to ninety  minutes after which time things fall suddenly quiet
- as I assume they are either all knackered or have been rewarded with many, many shoes.

Once again I have to apologise for a Facebook repost (pic below) but there is a postscript which I think justifies a little self plagiarism (can you do that?). Saw the product in the pic. 'Nads' in our local supermarket, apparently it's called 'Veet' elsewhere in the world. Being of an obviously juvenile demeanour I couldn't wait to get home and share the pic.

'Nads' for those times that you want your scrotum
to look like a frigate bird's neck pouch

Jeannette got a bit of a giggle out of it and was explaining to a colleague at work what the gag was. Her workmate cracked up and said - it gets better than that - there is a 'Nads Waxing Salon'  - big sign and everything at the Castle Hill Mall (huge - and I mean REALLY huge Mega Mall about 3 klicks away). Apparently it was originally going to be called Scrote and Ringpiece Waxers, but it turned out that the name was already taken by Australia's premier PPI claims Solicitors...

Another misunderstanding occurred this week, when Jeannette was advised not to worry about smart business attire for an upcoming work occasion and that it was OK to 'Just turn up in your Muff'. Further (and urgent) investigation revealed that this is the Aussie slang for dress down - from mufti, bloody obvious once you know, but for any non-UK readers, 'Muff' in the UK means erm...Lady Garden.

Oh and a thank-you to those of you that persist in perusing this drivel - page viewings/site visits have just passed the 12,000 mark. I know it's not earth shattering in the big scale of the the internet, but I'm fairly chuffed with it considering the biggest previous audiences I've ever had have been at Magistrate's Courts.

T + 631. What's that peeking through the square window?

Back on 25mg Predisone on alternate days for a bit (a steroid to you normal people) so suffering some sleeplessnessnessness and thought I might as well update this thang. Been for my second visit to the Haemo Consultant at the Kinghorn Cancer Centre (cheerful) near St Vincent's Hospital in Kings Cross, Sydney.

When I was here in the early 80s' Kings Cross was kind of equivalent to London's Soho at the time. Although I have very little memory of the event, Colin, the friend that I was travelling with tells a story of how we spent a very happy evening getting vey, vey, rat-arsed with a bunch of stubbly six foot transvestites at a pub here near to the Youth Hostel. Like many big city inner boroughs the world over, it has undergone a process of gentrification and is now a much sought after 'cafe society' locale.

Anyroad, as half expected the end of the ECP treatment and maybe me being a bit slacksy daisy about some of my meds has resulted in a flare up in  GVHD and CMV. Nothing too nasty but the Doc is trying a new (to me anyway) technique of  prescribing Valganciclovir in an ongoing lower prophylactic dose to keep the CMV down without unduly hammering my blood levels. I've had to start being a lot more conscientious about the non tablet stuff (the tablets are easy to remember) - Betametasone mouth wash, false tears and eye gel last thing at night and in the am. I've also got a Betamethasone cream which is nominally for external use only, but which the Doc has advised I apply to my mouth ulcers 3 times a day. He's also looking at bringing forward my innoculations as I have to have everything done again - all the stuff that babies have up to and including the BCG - should be fun especially polio. It's a bit of an adjustment working with the health system here, we'd been involved with the NHS infrastructure for so long that we had all the contacts and relationships in place so as to make things pretty seamless (a lot of this was down to Jeannette who is great at building relationships and getting people on side - I'm more your taciturn type of bugger).

A lot more of the health service is privatised than in the UK, so it'll take time to get the various agencies used to my presence and to get them to start liaising efficiently - a good example is the blood pathology labs, totally divorced and separate from any hospital and set up as high street walk ins, where all the samples are shipped off to a major processing centre in Queensland before the results get back to the Doc. It took more than a week for him to get the results - makes the NHS in the UK look turbo charged - and this is a week in which my CMV levels were still unknown (but on the up as I suspected).

Enough of that. You may be waiting to read of the latest act of muppetry from this family - we all have our moments and this week it's my turn. Now as a general rule we tend to walk around in the apartment wearing not a hell of a lot first thing - the house cleaning service doesn't normally come around until midday so it's never normally an issue. Milo feels so comfortable in the nud that he's normally down to just his vest within a couple of minutes of walking through the door. We tend to have the sliding doors to the balcony open rather than run the air con full time - being poms unused to living with it, the air con gives us all runny noses.

Oh bloody hell - looks like Humpty's out on the piss again.

So, getting ready the other morning, Jeannette away to work, Milo in his room watching kiddies TV on ABC1. I had just run a bath in bathroom number 2 adjacent to the entrance to the apartment as the ensuite only has a shower, was (obviously) naked when I remembered that I'd left the Kindle in the bedroom and nipped back to get it. Stopped on the way back to stick my head round the door so as to check on Milo - he's watching the Australian version of Play School and singing along to a song called 'Walking in the Bush' lyrics as follows;

Walking in the Bush
Walking in the Bush
Nothing's quite as lovely
As Walking in the Bush

So I started singing along with him and after a bit headed back to the bathroom having tweaked the words slightly to;

Walking in the Buff
Walking in the Buff - etc you get the idea.

Rounded the corner to go back to the bath to be met, mid verse by the  room service maid who'd dropped by early to get started.I couldn't really make out her face as I'd put in my lubricating eye-gel which makes things pretty blurry for about 10 minutes - all I know is the door slammed bloody quickly -  so not a big music fan then. I decided not to try and follow to apologise as it might only make things worse and still have no idea which of the maids it actually was. I now have to brazen things out with a big shit-eating grin whenever I meet any of them in the corridor, reception or lifts.

Milo is all teed up to start kindergarten at the school local to our new address on 2nd or 3rd of Feb next year. In the meantime he's got about 3 weeks on and off booked in a preschool nursery from now until late January. It's mix of between one and up to three days a week which is great in that it'll give us both a bit of a break from each other and allow him to makes friends with some of his peers who'll be moving on to the same school next year. He's gradually picking up how things work here, one of the carers at the preschool was telling me about how all the kids were lined up the other day ready to go outside and play. So they all put their sunhats on and have to hold their hands out to get a squirt of sunblock to apply to faces, arms and legs. Milo stood dutifully in line, received his squirt of sunblock and then immediately double timed it away to the bogs to wash the stuff off his hands. It took two of them to get him coated up with the slap before he could go outside.

He's having weekly swimming lessons and has been doing really well doing the doggy paddle in his arm bands - up until the past couple of days, when having seen me doing lengths of front crawl in the apartment pool, he has decided that this is how he will swim. To be fair, he devotes a lot of energy to it but the armbands don't help and the mad thrashing looks like he's trying to part the waters vertically down through the pool like some demented mini-Moses rather than make any visible lateral progress. Still it knackers him out and that's got to be good. Oh yeah latest stats anomaly  - I'm suddennly shit hot in Turkey, 20 views in one day!?

Reminder for self - Bing Lee next time.

T + 619. No Soup for you!

Thought I'd start this one off with a meds refresher for those of you that are either pre or post transplant. Daily I am on;

Ciclosporin 125 mg OD am
Ciclosporin 150 mg OD pm
Aciclovir 400mg BD
Mycophenalate Motefil 2g BD
Penicillin 500mg BD
Budesonide 3mg TD
Amlodipine  5mg OD
Betamethasone 500mcg TD
Folic Acid 5mg OD
Omeprazole 20mg BD
Pozaconazole 5mls YD

This is pretty much how things have been for about 18 months now the only real change is when I get a CMV reactivation and have to swap out Aciclovir for Valganciclovir. I take the occasional batch of steroid eyedrops and artificial tears but really they don't seem to make things any better.

I recently tried some quack eyedrops I saw advertised on TV - synthesized from Manuka Honey (with its amazing healing and antibacterial properties blah blah blah). The blurb said that after some initial sensitivity I would feel relief from soreness and dry eyes. The ad showed people who had been suffering for years, only to be healed by this miracle stuff.

Ah - that's better

So I popped a couple of drops in each eye and spent the next ten minutes writhing and blundering around the apartment in absolute agony. It was rather like someone had kicked me really hard in the plums, then gouged my eyes out of my head with a spoon and then squeezed my screaming testes into the vacant eye sockets. The only way these fucking things give you relief is when you've virtually dehydrated yourself crying enough to wash them out of your eyes. There is no fool like an old fool - because they get more illneses! Lourdes runs on mugs like me.

Jeannette came home from work with a great story  - she's starting to settle in to her new role and is zapping here and there across the country by jet getting in to see the various medical units and consultants who work in haemophilia in Australia. As they get chatting things often get very technical and as in any specialist area there is a whole language of acronyms and professional shorthand in use.
On some occasions the subject of my history of illness comes up and as it is a fairly rare type of disease the consultants are usually interested to hear more details. In this particular instance from what I can remember it went something like this;

Cons: 'So hubbie's had a BMT - what was it MUD, autogenic?'
Jeannette:' No - allogenic full match sibling'
Cons: 'Oh - OK , for ALA?'
Jeannette: 'MDS'.
Cons: 'Uhuh - 5q short string, Refractive?'
Jeannette:'No  - RCMD.'

The conversation carried on in this vein for some time and eventually came up to date with how I am now;

Cons: 'So current prognosis then?'
Jeannette: 'Chimerism 99 / 100%, transfusion free, but has chronic GVHD - ocular and oral, on immuno-supression and prophylactic anti-b's'
Cons: 'OK I see - Jellybean?'
Jeannette: (slightly perplexed) 'Eh? I haven't heard that before.'

a brief silence....

Cons: (starting to lose it) 'It's a sweet - I'm offering you one' ....hilarity obviously ensued.

A quick aside - I'm getting a bit dubious about the quality and accuracy of the stats calculator at blogspot. I dunno if other people reading this can go into the stats part of the site and see the country by country breakdown as I can, but out of the blue yesterday I was a big hit in Romania. Nothing at all for that country since I started in Feb 2013 and all of a sudden 43 page views out of nowhere. Weird.- unless the story about a massive nadgered dwarf appealed to the national psyche?

On the subject of which - Milo continues to be a source of total joy and teeth gnashing fury often in the span of the same minute. Mealtimes are particularly testing - often a minimum of 90 minutes to get it down him and a constant stuggle to keep him and his attention at the table. Earlier today after 45 or so minutes of me attempting to get a bowl of chunky beef soup and a slice of toast inside him we had the following exchange:

Me: 'Come on you like this soup! You said you loved it the other day - eat up'
Milo: 'No - you can't make me'
Me: 'Do you wanna bet? Either you eat it or you're going to be frigging wearing it in a minute son' ( I'm pretty sure I just said frigging)

No Father!! - I shall not eat the chunky beef soup you offer

Jeannette at this point could hear that the situation was escalating toward meltdown or mutually assured destruction and stuck her head out of the bedroom door to call over ' Nick - TAG!'
I've written about this before, it's a coded (we thought) system we use so that if one of us can see that the others' fuse is burning short they can jump in to avert murders. I just about had the red mist and was in no mood to be tagged and then Milo piped up; 'Yes  - tag Mummy in now Daddy, I've had enough of you'.
Defeated and deflated I skulked off to the bedroom to sulk and play Scrabble on the i-Pad. Obviously not that much of a code then - and less than 5 minutes later the little turd had finished the rest of his dinner completely and came in to give me a consolatory losers hug. I am now officially out of my depth.

Coda: - at the beach today him, standing in the sea  shouting back to land at the top of his voice
'Mummy! You have to wash my swimming costume tonight'
Jeannette calls back from the beach 'Why darling?'
'Because I've just done a great big wee in the sea'

Cue twenty or so heads swivelling towards us from adjacent towels.

T + 615 The Power Shot.

Health still holding out well, manageable mouth ulcers, -  eyes just as sore, not great and looking a bit like that army fella Sir Mike Jackson before he had his 'eye-bag' removal operation! However - no CMV reactivation, great appetite and now swimming every day in anticipation of getting back in the gym when we're housed - so not whinging for once (much).

Need a hand with those bags Nick?

Huge relief at this end that we've finally secured a home (for the next year at least) - and now it's time for the not so fun bit ie handing over the large wad of cash that we had to dangle at the Estate Agents and landlord to secure the tenancy. The talk over here is exactly the same as in the UK as far as the property market goes, just switch 'LONDON' for 'SYDNEY' and it's ident-kit. Unsustainable house price bubble blah blah blah, first time buyers priced out of the market blah blah blah, negative equity all round when this goes tits up blah blah.

I was here more than 30 years ago and the character of life was still pretty distinctive and most markedly Australian  - not sure if McD's had arrived back then, I do remember 7/11 being here. The intervening years have worked on this country in much the same way as they have on the UK. Increasing Americanisation and incremental dissolution of the existing domestic lifestyle. Except here there is a hybrid of Commonwealth leftovers, US influence and things that are still undeniably and indelibly pure Australian. The national obsession with sport of any kind for one thing and a very sensible attitude towards the use of 'language' on TV. The daytime TV hosts swear their heads off (arse bugger crap etc) without an eyebrow raised or grovelling apologies for 'any offence caused' which is really pretty refreshing. I haven't come across any songs or films yet where the word motherf**ker has been rendered as 'motherflubber' or otherwise obscured by the censors as happens in the UK.

We went 10 pin bowling as planned and it was a great success, went down much better than the mini golf. Getting there was a tad comical - although I'm gradually familiarising myself with the surrounding area I still plug most destinations into the sat nav before setting off. In this case I programmed it in and set off for Castle Hill AMP Bowling Alley, about 15 mins to Castle Hill or so I thought. We ended up pretty much mimicking a scene from The Simpsons where Homer jumps in his car, does a U-turn in the street, parks outside the house opposite and jumps out, having arrived at his destination. We could have walked it in less than 5 minutes I reckon. I haven't been for yonks and so it was all very rock n roll and high tech inside Milo was eyes and mouth agape.

Steady there Milo

I had the gutter bumpers and ball ramp set up for his game - he insisted in trying to use a 12lb ball and minced, hunched over to the ramp like a dwarf hauling a huge scrotum in front of him, occasionally dropping it and each time (thank god) narrowly missing his foot. He developed a technique that he called his 'power shot' that involved increasingly long run ups to the ramp before giving the ball a push - sending it pinballing off the bumpers down the alley. The run ups got progressively longer as the games went on, until by the end of the second game he was disappearing from sight off behind the games machines away to the right of our lane for a 10-12 second run up for the 'super power shot'. This was all well and good except for the fact that he came to a grinding halt at the end of each run up to push the ball!

Today we shall mostly be window shopping for;

• a big yankee style fridge freezer with ice maker
• portable air conditioner (none fitted at new house)
• microwave (we dumped our old crappy one in the UK)
• new hoover (Australian border control requires hoovers are spotless to avoid contamination, so we left ours with the UK tenants)
• broadband, TV and phone package.The equivalent to UK Freeview is called Fetch TV in Aus.

T + 612. The cracks are starting to appear.

 Well here we go again another Monday morning spent waiting by the phone to see if our application for the house we viewed and offered for on Saturday has got any legs. I have progressively grown a thicker skin over the past couple of weeks and no longer feel the burning urge to hunt the Estate Agent down and crush their throats until their eyes pop if we don't get accepted for a place. Thing is you see the same guys each week so you can't really afford to piss anybody off.

The object of our desire

Going to the viewings can sometimes leave you with a bit of a funny taste in your mouth afterwards, - being a chap from the southern counties of the UK, I tend towards natural politeness (except with friends and family) and maybe some people get overly competitive, but I really have seen some Grade A sharp elbowed aresholes trying to ingratiate themselves with the Estate Agents on the day. There was one particularly pushy prick at the 3rd viewing we attended on Saturday, he was mobbing the Agent with his paperwork - bank statements, credit card statements, mobile phone bills, personal references etc I think I even saw his certificate for the 100 metres front crawl when he was 8. The geezer was stomping around the house loudly declaiming to his wife where their furniture was going to go, he was a real bell end.

What he hadn't realised was that at some point earlier in the day his fat arse had split completely through his the back of his shorts and his hairy white butt cheeks were playing peek a boo out the back - it kind of put the dampers on his 'top boy' act - Jeannette and I took great delight in keeping schtum about it. I kept myself amused by making very loud juvenile comments about what a cracking house it was, - asking about the ring main and musing that it was a bummer that there was no air conditioning, just ceiling fans. It is of course entirely possible that this was another tactic on his part - you know, to scare people off touching door knobs thinking maybe he'd had a scratch but I could be over (anal)ysing. I've probably got completely the wrong attitude - but I find it a bit demeaning to be seen to be 'trying too hard' - you've got to have a bit of self awareness and grace about this kind of thing.

Just heard from Jeannette at work - the Estate Agents have been on the blower to her boss to confirm that he is her boss and that she is employed where she says she is, which is further along the process than we've got before. Hope they don't try and get references for me - not that they'd be negative, it's just that I left the company 3 years ago and Transport for London is such a huge organisation that I wouldn't know where to start if I were trying to get a reference - let alone someone based 10k miles away in a different time zone.

Mrs has just been on the phone again, EA's wanting more background info on us and on Wellie - I'm forcing myself to feel negative about this because I don't want the kick in balls feeling if we don't get it - the thought that Mr 'Arse-Me-Out' Trousers could get it over us would really be just too much.

We had some storms and high winds over the weekend and as I write all I can hear outside is chain saws and wood shredders going off around the neighbourhood as the clean up starts.

In an effort to be a better Dad I'm doing more varied 'stuff' in the daytimes with Milo. We did Putt Putt Golf last week and we're kicking off this week with 10 pin bowling. I'm psyching myself up and hoping it doesn't end up with tears and another public tantrum. Just can't help it though - I fucking hate it when my ball drops into the gutter at the last second.

So we're off to do that and I'll update soon.

Oh and here's another FB repost just for posterity.

I'm a bad father and I'm going to go to Hell. At Clontarf Beach today trying to get Milo to write his name in the sand. He's not interested. So I said look, if I trace the letters in really lightly with my stick, you can go over them afterwards with your stick and it will look like you're writing them. All of a sudden he's interested so I trace the letters out lightly and leave him happily to it.

When he finished he came running proudly up the beach to take me back down to see his writing. To give him his due , it did look fairly impressive scratched in 24" high letters across the beach;

MILO STOREY SMELLS

I'm just sad that we didn't have a camera to hand so I could show you the expression on his little face as he was standing proudly next to it.



*******STOP THE FRIGGING PRESS**************

Ahem - er - We got the house - so suck on that Mr Bumcrack. I fang yew.

T + 609. This one's like Bertie Bassett at the STD clinic.

This first story is a Facebook repost from earlier in the week - apologies if you've already seen it, please feel free to apply for a full refund on your way out.

Milo calls to me from the bathroom;

'Daddy  - I think we're going to need some more shampoo because I've just washed my bottom.' Curiosity compels me to check. It appears to have taken entire large bottle of Johnson and Johnson No More Tears Formula baby shampoo to get his arse clean and the bath is luminous yellow with the stuff, maybe he self administered an enema with it - I don't bloody know, I'm beyond incredulous. When I eventually get him out of the bath - he's slicker than fricking otter shit due to the 50/50 concentration of shampoo to bathwater, the only way I can think of to get him cleaned up is to slide him into the shower cubicle and keep him there until he stops foaming. The other apartments must have thought I was trying to cram him into the microwave for all the bloody racket he made - anyway now to face the rest of the day with the shiny arsed little critter.

Time to get out now Milo

About time I wrote a bit about MDS, recovery etc etc which is supposed to be the point of the blog in the first place. I am (thanks to the big fella) currently enjoying an extended hassle free spell of relatively rude health. Mouth GVHD is at manageable levels and does not impact on my eating, the eye GVHD if not significantly better, is still no worse and I can spend a part of each day out of sunglasses even in full sunlight. That said, my eyesight is not good and it looks like all the effects of the Lasik I had in 2006 have now been negated by meds  and even though I hate wearing them, I may have to be Mr Speccy Twat again in the near future.

However whilst I'm enjoying this spurt of good health, I'd like to give a mention and pass on my best wishes to two of my Facebook buddies who are currently having less than glorious times at the hands of MDS - Tammy in Canada and Sam in the UK. I hope that you can both look at what Jeannette and I have done in the teeth of my illness and cast forward to a time when there is much soppy fun to be had and many stupid arsed things to do - post transplant. My thoughts are with you both.
I'm not due back at the Hospital until 18th November and no blood tests due until 14th or so, meantime I just have to sit tight and steer clear of antipodean lurgies. Good name for a band.

In an effort to demonstrate that I wish to educate and inform and not just sit here brain farting, I'm going to lay some of my newly acquired local knowledge on you. For example, bedding such as sheets, pillow cases etc over here is known by the generic name of Manchester. This apparently is because that in them there olden days all of it was imported from the UK in crates marked up with the the place of manufacture hence "Where do you want me to stack this shitload of Manchester" caused the word to enter common parlance - shops and supermarkets actually have "Manchester" signed above the relevant aisles Apparently the same is true for crockery becoming "China" and now I'm just off to relax with a nice bit of Colombian (no - the coffee).

Next, a RORT is Australian for a con, scam or rip off. I was most disappointed to learn that hardly anybody says "Bonza" anymore it has slipped out of the idiom over here in the same way that "Jolly good show" has in the UK. Another thing is that for sheer uncaring, unresponsive, arrogant and just plain shitey unprofessionalism Australian Estate Agents leave the UK guys in the starting blocks. Demand in the housing market here is such that the lazy buggers just have to turn up at the the house they are showing, unlock the door and then just sit back and wait to be hosed down with cash. Absolute shiny faced money grabbing fuckers to last so far in my experience.

In the interests of keeping Milo occupied and unmurdered, I took him for a couple of rounds of what I used to call Crazy Golf at a place called Ermington Putt Putt about 30 minutes drive from our apartment. It was nudging 30 deg when we got there at 11am and the course was pretty much deserted apart from - well I'll get to that bit in due course. There is a choice of three different courses Water, Jungle and Crazy and we elected for two rounds starting with the Water course. Now saying that Milo is hard-headed, stubborn and opinionated is like saying the sun is hot and big and difficult to lift. They just both are.

Generally any given social scenario involving trying something new with my son plays out like this. I start off all good intentions and 'let me show you the wonders of my world mini-me' he digs his heels in and tells me in his sweet 4 y/o way to go poke it. I get stroppy - he gets stroppy, one of us storms off muttering 'Fuck this' and the other one starts crying - I'll leave you to you work out who's who. So to try and ensure that our day at the golf lasted longer than 3 minutes, I soon gave up on showing him how to hold a club or take a shot and kept my neck resolutely wound in whilst he held the club one handed, arse backwards and merrily divoted his way round the astro-greens - after all he was enjoying himself scoring about par 12 per hole.

As we were playing I was vaguely aware of a guy a few holes ahead of us who was setting up various bits of video and photographic equipment on tripods and taking loads of what I assumed were publicity shots. Milo and I carried on playing and eventually bickered our way round to the hole where this guy (let's call him Trevor) was set up. He stepped to one side as I teed up my first shot on the famed Bart Simpson  - the13th hole back nine at the Ermington Putt Putt Water Course. Just as I shaped to putt he piped up sagely;

'You want a tip for this green mate?'
I looked up at him unbelievingly, my face a mixture of confusion and dumb amazement - this is a 20ft long crazy golf astro green after all.
'Got a top tip for this - guarantee you a hole in one'
A cold creeping realisation went through me - this is the type of man who considers himself to be the Crazy Golf Course Resident Professional. This is the absolute definition of 'too much time on your hands'. Writ large. In granite. Mount Rushmore style. And floodlit.

Well lets get this over with then.

'Er - OK'

To save you non-pros from all the technical jargon, I had to cannon off the kerb to the left of the Bart and Lisa Simpson house sat in the middle of the green (I base this assumption on the fact that they were both small and rendered in yellow paint - they may as well have been dialysis munchkins as far as resemblance went. Oh and there's also a kind of melty Garfield who looks like the bastard offspring of Buddha and Tigger). The rest of the shot was then blind, but Trevor assured me that if I pitched it just right and cannoned at the point he'd indicated - well it'd be a no brainer.

And bollocks - he was right. To further improve the situation Milo decided that he also wanted to do a hole in one as well and went through the whole bloody course of instruction again before totally disregarding everything he'd just been shown and then getting a bloody hole in one via some kind of St. Vitus dance/hockey shot.

This was sufficient to convince said resident pro that we needed his advice on the lay and technical aspects of the next few holes. During this time I learnt that he is Captain of the Ermington Putt Putt Golf Team (pro tip - never call it crazy golf, it's like calling archery 'bow and arrowing shooty') and was in the process of making a video of himself scoring three consecutive 'holes in one' at each green on the Water course, shot in real time unedited to show there was no trickery to this feat. This done he was then going to replicate the whole process on the Jungle course. Stupidly, sucked in by the scope of his ambition, I said ' - and then the same on the Crazy course?'. I received a look  'Serious Team members don't play that one'.

Over the next few greens although there were no further holes in one, I learnt that Trev had filmed more than 200 videos of himself playing at Ermington which are uploaded to his Youtube channel puttputtdownunder. Monies raised from the channel and team activities all go to charity - so who am I to mock this man's magnificent obsession.

Our time together ended on a poignant note as I was telling him about where we live in the UK, which is in East Sussex not far from Hastings.

'Jeez mate! That's where they just played the World Championships - have you been?'

'Well not to the World Championships, but I have played Crazy Golf on the seafront'
'Putt Putt'
'Er - yeah'

He's gone a bit misty eyed and is looking at me as though I'm Neil Armstrong or Sir Edmund Hilary  - for I have set foot upon the hallowed ground about which he can only dream from afar.

T + 602 Landfall, Australia and Dead Ben

Seven days to go.

Turns out that we wont have to put anything into storage as our shipping allowance is 45 cubic metres which is enough to handle anything we want to take with us. The packers are coming on the 26th, 29th and 30th September - apparently they descend on the house like a horde of soldier ants. the shipping container is being dropped outside on the 30th for 3 to 4 hours during which time the entire contents of our house will be transhipped.

...which is exactly what happened. Fast forward 3 weeks - we are now ensconced in our temporary apartment in Baulkham Hills and settling in nicely. Huge amount to catch up on.

We are house hunting and are currently waiting to hear back on a lovely house in a suburb called Beecroft. There is huge demand for decent rental properties and the north western burbs (Pymble, St Ives, Beecroft, Turramurra) where we are looking attract quite literally dozens of viewers on open days. If we wanted to live around here (Baulkham Hills) you could get a dirty big new 5 bedroom, 3 bathroom place probably with a pool for about $650 pw - but I'd contrast it as choosing to live in Milton Keynes rather than Tunbridge Wells.

So what with me being the house bitch and all, I have wasted no time in getting the low down on the supermarket situation here. There's alot less competition here than in the UK, - I've only come across three different places so far Coles, Woolworths and Aldi. Woolies is the winner- Aldi is just as pikey as in the UK and Coles is more expensive than Woolies but the quality is about the same. Bit more expensive over here as well, but a canny house bitch is always on the lookout for bargains.

Milo reduced nearly a whole aisle of people to tears of laughter the other day - we were walking past the deli counter next to a partially used wheel of Swiss cheese when he piped up incredibly loudly 'Look Daddy they've got holes with cheese in it!'. He's also made a new friend - as we walk through the park to meet Jeannette for lunch or to go to the shops we see an incredible range of wildlife. There are eels and giant carp in the pond, weird birds and ducks, loads of wild rabbits and reptiles. In particular there is a very large very dead lizard by the side of the path that we have been seeing everyday for the past two weeks. Milo has decided that he's called 'Dead Ben' and I get an update on how things are progressing as Milo shoots off ahead to cop a look and then jogs back to report. It started off as 'Dead Ben has got flies on him daddy' then 'Dead Ben has got really fat' to more recently 'Dead Ben has exploded' and 'Dead Ben doesn't have a head anymore'. After we've stopped looking and move away he sometimes signs off with 'Bye Dead Ben  - see you tomorrow'

Just heard we didn't get the house. Bollocks. Jeannette isn't so pissed off because she didn't get to see the place, so she doesn't know what we've missed out on. I think I need to grow a pair and not get so invested in these places when we view them. I've been trying to see about 6 properties a day so far this week and its boiling down to great house  - shit location or vice versa. luckily Jeannette's work aren't going to pressure us out of the apartment but it would be nice to get it sorted as living here has a definite tinge of transience or weirdly being in limbo. once you find one you like (we now know) things get dirty, there are instances of people offering above the quoted weekly rental to secure a property or offering x number of months rent up front. We've checked the finances and we can afford to put up a bung of about 3 months rent to help secure a place if necessary - but it fucks me off massively to have to do it.

Have seen doc and had blood tests - all seems OK at the moment, no recurrence of CMV yet but as long as I'm on such high levels of immuno-suppression, it's really just a matter of time before something kicks off.
I had to take Milo in with me for the consultation as we haven't got child care or school sorted yet and the first thing the Doc said was 'Milo eh? My dog's called Milo'.

Jeannette's had me in stitches with tales of her recent business trip to Perth. On her flight was a large group of what I am going to term 'God's Special People' who I suppose due to vagaries of airline ticket booking, were salted generously among the general pop rather than seated altogether with their carers and medics.. Jeannette had reserved a window seat and as she approached her allocated seat she noticed that it was already occupied by a middle aged lady.

It's my window seat I tells ya!

She later told me that the general background cacophony of yelps, howls and gibbers should have alerted her to the fact that this was no ordinary flight - but she pressed on and asked the woman if she would mind moving as she was in the wrong seat. Big mistake - the woman started barking and howling at her bug eyed- and just as Jeannette was thinking no-fucking-way-aye-ay am I sitting next to this fruit loop for the next five hours, a woman from a couple of rows back came forward and announced that she was the carer and would happily swap seats - job done. It was apparently one of the funniest flights ever, with any passenger who wanted to use the loo having to bob and weave running the gamut of random flying arms and legs or being barked at - a bit like Indiana Jones trying to get out of the Temple of Doom. At one point the plane hit some turbulence which triggered a noise like the entire occupancy of an ape-house being electrocuted.

T + 565. It's Lawrence Llewellyn-Bowen time

Well well well.

Been a very busy sausage this past couple of weeks, luckily I've enjoyed a period of rude health and been able to get quite a lot done without reverting to doddery old fucker mode and needing lots of little cat naps. I've also had help from my eldest son Callum who has been pitching in with decorating and trips to the dump. Nearly all the little nagging extant DIY jobs have been completed and the house is looking great, I find myself wondering why the bloody hell I only get round to them now just as we are about to hand the place over to tenants for X amount of years.

Jobs so far completed;

• 2 x bathrooms repainted and waterproofed with new mastic 
• 1 x new shower guard fitted
• Kitchen repapered and repainted
• Kitchen worktop sanded and re-oiled /all joints resealed
• Porch repainted
• Sills stripped and reglossed
• Cellar door fixed and and repainted
• Bedroom #4 repainted

Still to do;

• Hall and staircase walls to be repainted
• Parts of lounge to be repainted
• Cellar to be cleared and repainted
• Milo's room repainted
• Carpets to be shampooed

Turns out that we have more shipping space than we thought, which is pretty much gonna negate the need to put stuff in storage, which is a GOOD THING as even at best case scenario it would have cost about £4800 over four years. So far we, well just I, have been quite brutal about what goes to the dump and a lot of stuff that I would have normally ebayed has been consigned to the hereafter.

We've found a lovely family who want to take on our house long term and they're also happy to adopt our Koi which is a weight off because I dunno what else we could have done with them. I've put the Disco on ebay, but no sensible offers so far - I had an offer from one comedian who told me he'd seen a car identical to mine on sale for £3800, so I told him he'd better go and buy it then because there's no fucking way I'm selling mine for that - given the short amount of time remaining before we go this may be something I'll come to regret!

The relocation company are coming this Friday to survey the house and get an idea of how much kit needs to be moved, we've been advised not to do any more packing as it is their thing, so we're happy to let them assume that burden. It also means they'll shift all the really tricksy onerous stuff that I was dreading having to do, like the cross trainer and the dirty big chaise longe  up on the 2nd floor.

As I mentioned above, health has been really good over the past couple of weeks - my mouth ulcers have virtually all gone and although my eyes are still not great, things are bearable. I was up at Kings College Hospital today to see my consultant - who is very pleased with my progress. As it turns out I'm rather fortunate in that she is Australian and trained at the major hospitals in Sydney and is therefore able to introduce me to specialists she knows at St Vincents Hospital  -  so that with any luck the transfer of my treatment and care from the UK to Aus should be seamless. I collected a bulk order of meds today - enough to last me 3 months, by which time I should have transitioned to the PBS (Aus version of free prescriptions). I sat down and did some maths after I got home with my four shooping bags of medication and worked out that the retail cost would be somewhere in the region of £6k! So big up to the NHS - I love you.

T + 553. Viruses for Dummies (by a Dummy)..

28/08/2014 3am

Written during an unusual bout of sleeplessnessnessness....

First post for a while as I had been feeling a bit shite due to having recurrences of RSV and CMV. RSV appears to me to be a little kiddie cold/cough virus that most folk with immune systems can fight off fairly easily, however I have learnt to my cost that given the chance it will seriously kick my arse. So now I'm super primed to notice the first tickly throat or runny nose as a sign that the cack is headed fanward and I duly shuffle off to get anti-biotics double quick.

CMV (Cyto Megalo Virus) - er translates as Big Cell Virus and is a bit more tricky to keep down.
This is because I take immuno suppressants to help minimize the effects of GVHD (Graft versus host disease). GVHD is best described as some of the donated stem cells in my system behaving like a party of blue collar types from East End London going on their first package holiday to Spain circa 1972.

If I may clarify, nothing is good enough for these fuckers  - nothing's as nice as it is at home, you can't get a decent pint of Watney's Red Barrel and the you have to eat chicken and chips in a basket every bloody meal because you won't touch that 'foreign muck'. It's too hot, too cold, the drains smell funny, you get the shits from the tap water and the poxy waiter in the funny tight trousers keeps making big eyes at your missus. In short not a million miles away from the attitude that these stem cells have. In an unfamiliar environment they have responded by kicking up and giving me ocular and oral GVHD which (again I translate) means eyes like pissholes in the snow and a mouth like the Sarlacc pit, non geeks please feel free to google that.

say aahhhh  please Mr Storey.

Anyway, I digress - drug therapy of GVHD means having a shitty immune system, which means I am prone to CMV/RSV (or any bug really) breakouts. Although the effects can be pretty outrageously bad if left untreated I've been lucky enough to get away with just one extended hospital stay when my virology count went haywire. Normal count is between 0 to 200, mine at one point was 360,000 thousand - cue big time gastro-intestinal rebellion, headaches, fatigue and three weeks in hospital. Now bear with me, the treatment for CMV is a drug called valganciclovir, jolly expensive but effective however it has the unfortunate effect of stepping on the levels of blood content, haemoglobin, platelets and white blood cells all drop during the course which means? Yep! further reduced immunity, fatigue and blood transfusions - you do however start to feel better as it gets to grips with the CMV.

Salvation in this respect has been  - or appears to be the ECP treatment I receive at Guys Hospital, I've written about this in detail in previous blog entries so if you are unfamiliar with the term get off your arses and read some of the older stuff. The idea here is that ECP can accelerate recovery from GVHD by frazzling the naughty cells with UV light. I've been having treatment since last December and am delighted to have noted that in the past few weeks there has been a real improvement. I am now able to use big boy toothpaste again and even managed a mild chilli pizza the other night with just some minor sobbing.

My eyes are still a bit dodgy, I'm sure that people think I'm back on the piss when I first take my sunnies off - but again I feel there is an incremental improvement with each bout of treatment. So if the ECP works, my immuno suppressants will be reduced, my resistance to infection will increase, I won't get CMV/RSV so I won't need valganciclovir, so my blood levels will go up and I won't need transfusions and there you have it all simple and wrapped up.

Whilst not wanting to jinx myself, I feel the best I have for months which is just as well considering what my family and I have ahead of us in the coming weeks - more of which later.

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'

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.