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.