Arthur has been triumphant but I am not allowed to say more so I won’t. We are very very proud of him.

As for me medically nothing of great consequence to report. It looks increasingly unlikely that they will recommend to go ahead with the transplant for all the reasons I have already reported. There are still a few test results required to consolidate this view and so we have to go again in the next few weeks. My bloods are still good and I am very well so plenty to celebrate. My response is to trust the judgement of the specialists concerned particularly those that would have to undertake the procedure and if the risks are too great then I would certainly not wish to have it. I will report back on the outcome when we know. As I expected it’s just a case of carry on as we were hurrah!

My Sister Julia her husband Richard and their friends have completed a fundraising for Amyloidosis bike ride in Holland. They had a great time and achieved their goal of spelling out the word Amyloidosis in the names of towns and villages visited (you can tell they are teachers). They have raised £3500 !!!!. A stunning total. Thank you, thank you to all who contributed. If you feel inclined to make a last minute contribution its not too late but will be very soon.

https://www.justgiving.com/Julia-Arrowsmith

Here is the photographic evidence of their trip. Many bravo’s and love to them.

My health is good and the National Amyloidosis Centre says so – hurrah!. Nonna had a funny turn before we left but is ok now too – wahoo good news all round!!!

For me things are looking very positive but I am not out of woods. – To be honest I never will be – but as long as I am not in the swamp then I will continue to enjoy the primroses and ignore the occasional discarded jonny on the path toward the gift shop and cafeteria – always the best bit. We are in the taxi with an Turkish/German/anarchist/Marxist driver (can’t tell exactly which way he’s hanging) – whatever he’s got to be a rarity, I wonder if he saw my anarchist badge. I am very impressed by his knowledge of politics and economics but boy is he boring. Oh to be with an infuriating racist, bigot whose got a sense of humour but jeez a self righteous disapproving of everything, lefty, like me – Maria and I may have to top ourselves during the next four and a half hours driving back to York.

Back at the Royal Free other than accidentally exposing my tinky to the lab assistant after putting the hospital gown on backwards and listening to a gruesome horror story I had saved on my iPad, on drowning and suffocation while in the scary scanner, nothing of significance to report. The MRI technician was having great fun pretending that because I couldn’t hear, headphones on, she could say outrageous things and I would just nod. At one stage she amused us both by saying ‘and now we are just going to pop your liver out, OK?’ – I was very amused. Nothing better than a lack of professionalism in such a serious profession. I love her. She also told me a favourite horror story of hers was about a MRI scanner that becomes possessed and incinerates its patients – must remember that next time I have one. Two great quotes from the consultant: I asked – would any lifestyle changes make a difference to my amyloidosis? She said – which lie do you want? I said, how about exercise? She said (read this with the correct heavily loaded emphasis on the last word) Exercise makes a difference – apparently.

I am going to get the dreaded pipe down the gob again – boy oh boy am I getting bored with that and all the other tests – wonder if you can die of boredom with cancer before dying of the disease. I will also have to have a stool examination, no it’s not quality control at Habitat. btw any volunteers to help? I will probably get another 2 courses of chemo to try to push my 97% remission to 100% hopefully with my favourite steroids.

Our driver down was also Turkish and drove Turkish style (not a delight) at a million miles an hour telling us how he had planned to kill his son in law but now loved him like a son, phew for him! Met the wonderful 2 boys and a girl while in Hampstead. Had a smashing Spanish dinner and their delightful company – although they did talk about writing and narrative and things when I really wanted to talk about me or my poetry. Speaking of poetry I have concluded a number of pointers for fledgling poets who aspire to be as good as me.

1. You have heard it before but it I’ll say it again – Don’t correct
2. Don’t read too much of other people’s – you will either give up because they are so good or pick up bad habits cos they are so bad.
3. Get someone to read your stuff out loud. Avani has read some of mine and I have recorded her and uploaded them onto the blog. She makes my bad stuff sound good
4. Don’t write lies about yourself – everyone will know
5. On the other hand, freely make stuff up about others – everyone will fall for it and think it’s true.
6. Quantity not quality is what counts – lots of bad stuff from which crumbs of good stuff emerges
…bit like life – nah cobblers! Life is good if you are lucky and in so many respects I am.

It was on the news yesterday. A woman of 51, friend of Jarvis Cocker, a mental health nurse actually. Strange thing to report until it was made clear she had been the inspiration for a well known ‘Brit Pop’ song I had never heard of. Certainly would have been better if it had been Ebola or Alzheimer’s, not for her of course but for those of us whose case notes tally with hers it’s a bit of a kick in the shins under the table.

Of course this is actually nothing new at all. The definition of a serious illness is not “0h well you’ll be fine in a bit, so no need to worry” it’s “You might not be fine ever, so you had better worry.” As you know its all all about proximity. Something that happens over there in another continent, country, city, town, village, garden or at another dinner table is out of range – the kick does not hit its target but a few shuffles closer and whack, a startled expression of unexpected pain and a big bruise that lasts a day or two for the whacked one – and at 2:30 am, sat up in bed with an iPad, that bruise does start to turn a bit yellow.

Of course its is ridiculous if you are one of those people who believe that human beings think rationally. But as a rule in extremis they don’t. Those very rare people who can land passenger aircraft on the Hudson River are just that, very rare. Us normal folk go off like last years fireworks having been stored in the garage and partly consumed by mice ( I speak from experience here) – extremely unpredictably not to say dangerously. So for a few hours I went “yikes.” Not proud not ashamed just startled. More on fireworks in a mo.

All this was not enough to diminish my joy one iota at the turn of the year and the wonderful social and family time we have had over Christmas. I was of course very disappointed to not have received more cards complementing me on my courage in the face of a life threatening disease and noting what an inspiration I was to you all. For goodness sake you did not take me seriously when I said I was not to be referred to as a hero, brave, a role model nor my state as a fight, a struggle or a battle. Where are the cards and greetings sent to me personally, never mind Santa, Jesus and the other Elves how about a few moonpigs with me looking uncannily like Che Guevara , strong, young , a bit revolutionary and certainly important.

Other than this bitter disappointment things have been truly blissful. Two boys at home with Maria, sadly one boy without one important girl (only temporarily I should say she will be with us today – hooray!!) and then New Year’s Eve with great friends. All neurosis of germs almost put aside save for a paucity of snogging or hand shaking which lets face it is always embarrassing on New Year’s Eve, and I was able to pull my ‘I am much to delicate to go outside at midnight and let off fireworks’ trick thus avoiding getting cold, burnt or on this occasion blown up by two incompetent lads cementing rockets into the mud so that they exploded catastrophically tethered to the launch pad.

I feel tempted to bore you with my list of presents. The best year ever in my view. Very little annoying soft stuff, none I think, plenty of proper toys, a weather station , a 1960’s movie camera, ‘Revolution’ not the real thing sadly, the book, Turkish Delight, a functional steam boat for the bath – all my goodies were really goodly and yes I did get slippers but what a joy! One every minor side effect I get from chemo is cold feet, so for the first time ever in the history of Christmas, here is a man receiving slippers from his wife and rather than seeing this as the final nail in the coffin for his secret fantasy middle age of Belusconi/Brand parties, being deeply grateful and toasty footed. Wonderful.

The passing of years, aside from the social opportunity has never meant much to me. Numbers don’t. If I am honest 1999 to 2000 did on some sort of Sci-fi/mythical level but 2014 to 2015, so what. I have always tried to avoid New Years resolutions but despite the theoretical stance expressed above I have always failed so to do. Last years was a big mistake as I started a catastrophic diet that eventually led to my diagnosis. I suppose that was a good thing but two and and a half stone in a few months was a bit OTT. This year I have set my self none. I have plenty of things I want to do – like, learn to write poems in proper verse forms but as I know I will fail, particularly if I set them up as resolutions for the first time since my teens, I have resolved to posit no resolutions directed toward self betterment. Such a tiresome idea anyway. Oh yes one resolution – no resolutions directed toward self betterment. That’s it.

Love and peace to you all. Xxx

Btw: I have finally managed to freeze out all the hits from spammers to this site, hence my statistics are now considerably more realistic (if ego deflating) as they are based on visits from humans rather than machines. I was intrigued by the 20 odd people a day that seems to be craving my pearls, it now is down to a more realistic 5 or 6 but happily they don’t include visits from me to view my own masterworks or any prospective Russian brides or adverts for cheap ugg boots (is that what they are called?). Many thanks to anyone who has continued to read this since August and particularly those that comment or follow up privately. It has been a lifeline to me! – but as I have said many times while I am grateful to those that read it, it is the selfish act of writing it that really works for me – so please please please no compulsion to care, to read, to write, to comment, to think about or to feel guilty about not reading (you b******s) – just be there. Ta.

I think I have managed to a fair impersonation over the last 6 months of a grumpy old man who hates everyone and everything that doesn’t fit into his particular world view. As it is Christmas and Jesus time I thought I had better set the record straight and say I am not really like that or at least I hope not. I don’t even dislike Christmas. I have always liked getting presents and quite like giving them. All my memories of Christmas are happy ones, even going to midnight mass with my mum and dad. So yahoo sucks to you lot that think I am just an angry cynic. Christmas cards annoy me because they feel rather compulsory and they fall over every time you draw the curtains – they are also, with very few exceptions very ugly indeed. However we had one this year that I really liked. It was by one of my great nephews and consisted of a stream of coloured lines in a vaguely festive shape – it seemed to have been done with no regard for any of the traditional symbols just an expression of perfunctory joy that summed up the mood perfectly. Other than that delight my nurse vomited during my chemo yesterday which was a festive role reversal and I found this letter (below) from Rowan Williams the ex Archbishop of Canterbury who I admire very much. I found it very touching if factually flawed.

Another annoyance I won’t subscribe to is wishing people a Merry Christmas. So I won’t and don’t. Instead I will wish all my readers   love and peace and a life as rich as Jimmy Hendrix only longer and without the drugs. Xx Here’s hoping we are all here next year especially  me.

Fiddled with www.cancerwithoutgod.com this morning to tweet when anything gets posted. Feel free to follow me @gravityisahat.

Bowels much improved, thank you for all your good wishes. Hmmmph! Seems my nerve endings survived the Velcade. – yes that’s the brand name for for one of drugs I take  that /which (someone remind of the rule in Strunk and White) can have some nasty side effects.

In excellent spirits as always – up at 4 .00 am this morning full of bounce. Might give this tweeting thing a try again. Find most tweeters just annoying but do subscribe to a few who keep me entertained/informed. I also happened upon this cafe sign

which/that (arghh confidence ebbing … ) could only be found on Twitter and I had to re engage to get a copy – hence I am tweeting again. ADNE will be in despair.

Not sure what the right formula is? Tweets that make you feel like you are missing out on a world of exciting things and why aren’t you more connected and interested get binned. Funny things as long as they are funny I might read. ‘I am overlooking the Grand Canyon – it’s 4.oo in the morning and it’s taken a 18 mile hike to get here.’ Binned and abused. ‘Link to my new book’ – binned. ‘Link to my new partner.’ – read – nosey. ‘I am feeling sad and vulnerable – read. ‘My cat fell over’ – read. ‘Mine and other people’s research is cooler  than yours’ – binned. ‘Look at the banoffi pie I just made/am about to eat.’ – binned. ‘Stephen Fry/Russell Brand said this’ -maybe read if I have time. ‘Support my campaign to rid the universe of UKIP and all similar entities’ – read – favourited – retweeted. ‘Chris Newell is just great. – so brave – so intelligent – so sporty – so sexy etc.’ binned (he lied)

Actually I have no sense of the Twitter community at all so everything I have just said is probably nothing like what actually goes on. But since being ill I have felt a constant need to shout about stuff. Never ever felt that before in my life. So as I have said many times before, and I am not apologising, I think it is something to do with losing control through illness then asserting control through mouthiness. So brace yourselves or just possibly as has occurred every other time I have tried to embrace this new medium I will lose interest and delete my Twitter account yet again – at least I don’t do Facebook.

(A few hours later) Oh dear this one really is full of typos. I feel bound to correct a few… just this once

Endoscopy done – phew!! I know I am a pussy but they really scare the shit out of me. I think I know why. There are not that many forms of death we can reliably practice but suffocation, choking and drowning are three we can. Burning at the stake is tougher, falling from a mountain likewise but every time we have a bath we can accurately rehearse drowning – so we know what it’s like, thus through familiarity we fear it more. The gastro endoscopy (I still don’t know what it’s called) combines all three deaths into one compact package. The drowning side is perhaps pushing it, but you do make a lot of spit.

Anyway a big thanks to all those who wished me luck (could it be that all of you have experienced this procedure yourselves – I think so) – there is a sort of endoscopy club much like the “I have had a baby club” where you can swap tales of how much you gagged and retched and crucially on the macho side whether you had sedation or not. NO I DID NOT! Pride pride pride.

My experience today was inspired by Vicd’s advice to “embrace the tube”. More than this I decided to embrace the experience as a whole, slightly hysterically. The effect must have been bewildering for the staff. I positively radiated confidence and good humour. Laughing and joking, asking fun questions, if I could have done a sashay I would have done one (M says I do this when I walk but I don’t know what it is) – good enough for ‘strictly’. Oh we had a ball me and the nice male nurses. During the procedure the humour got to such a height the doctor conducting the procedure joined in – lots of anecdotes about needing his glasses for the last two patients to find his way to the right place – not that funny perhaps but I found myself raising my thumb to indicate ‘what a laugh all this is.’ In case you haven’t figured it laughing per se is not an option.

Anyway do you know it worked. I wasn’t frightened. I found myself able to think to breath calmly and I feel completely unscathed whereas last time I felt like a newly released prisoner of war. I don’t believe in mind over matter at all, but in this case I applied it, and it worked. So more fool me.

Our Firework night party was my first full-on social excursion. Despite me being annoyingly neurotic about shaking hands, kissing, licking, sucking, or sharing body fluids and thus coming into contact with bugs and triggering a full on medical emergency, it went ahead as normal. With our 2 boys, 1 girlfriend, 2 sisters of girlfriend, 3 friends of boys, 2 friends of ours, our neighbour, her daughter + her tiny daughter, two local farmers and Guy, this was our lowest turn out ever. We normally host an unwieldily large hodge-podge of friends, mixed with heavy rain, bollock freezing cold, too much donated food, effort, conviviality, unthreatening conversation (yuk yuk yuk), ‘garden’ (euphemism for crap, fizzle-out, safe, non-bangy, non-Chinese) fireworks. One year I had to go home for a lie down, green-diced-carrot-faced before the bonfire was even lit. Normally I end up lying in a wheelbarrow, cold, wet, burnt and dripping in sausage fat, while friends wonder why they bothered to come and prepare their excuses for next year. This year had to be at a different scale cos of me and my contact neurosis but we did not want to dump it all together and imply that CANCER = CANCEL – oh NO NO NO! I kept my distance, fended off any attempt at an embrace with a firm left hook, stayed out of the barow and off the mulled emetic but loved it!

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Don’t know whether any of you out there have experienced this one but it was quite quite a surprise. It’s part of a set of cardio-respiratory tests to test lung efficiency. You are put into a sort of gas chamber, or that is what it feels and looks like, and you pop your mouth into a breathing device with your nose crimped. The chamber is sort of sealed and and you are instructed to breath normally (fat chance) then to pant and then the thing you are breathing through is sealed off but you have to continue to make the muscular movements of panting. I have made it sound worse than it is, you are not in an airless chamber and you have an escape button but I am buggered if I could do it. Oh and the other thing is you must not move your cheeks. Anyway it reminded me of dance classes I had in the 80’s which required the isolation of certain parts of the body, something like moving your elbow without moving your shoulder – useful training if you plan to audition for ‘Cats.’ Needless to say I just couldn’t do it and became quite giggly-naughty once the fear of suffocation had abated. This test was followed by another test in which you are required to breath in Carbon Monoxide – again presented in the way it was this sounded like voluntary euthanasia, not particularly dispelled by the comment ‘you might feel a bit woozy.’ Anyway I think I passed that one. Another happy day at the hospital.

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I met the consultant in Leeds today and the news is good, if as ever, uncertain. It seems that the indicators are good but because of my extra rare condition there may be some additional risk involved in the autograft. To find out more I have to have a few more tests including a repeat of the hosepipe down the throat jobby. Joy! Assuming the tests look OK and the additional risk is acceptable or hopefully non existent I would have a choice between the procedure taking place in December or January. I would opt for December to get it over with. Other than that there was lots of very encouraging news about a potential cure for my rare disease (mice with Amyloidosis are doing very nicely thank you) and monthly developments in treatments for my cancer. So all in all a pretty good outcome.

I must admit I missed my familiar York environment. The facilities in Leeds are very modern but the vastness is quite daunting. Half-dead cancer patients dragging on ciggies festoon the entrance creating a less than favourable first impression. Some of them are barking loudly as they inhale – is the license to do this a form of legitimised euthanasia or merely a rather moving expression of the individuals choice to “do themselves in.” – discuss. Thereafter various other members of the undead push their intravenous drip trolleys in and out of the ubiquitous Costa. I guess it’s reassuring to see normal cafe life being played out in these surrounding but the sight of so much clinical tubing with gaud knows what pulsing along inside, alongside the lemon drizzle cake and the skinny lattes does put you off a bit. Also the slippers and pyjama trousers poking out beneath the crumpled dressing gowns are a tad excessively informal, but no doubt I will be there before long, pride is not something I can be bothered to hang onto when the chips are down.

Talking of pride, a highlight of the conversation with the consultant was to be cross examined on the consistency of my poo. Not something I had often had cause to ponder on. However all you folks out there beware of a greasy consistency (happily mine isn’t) as this could mean trouble – how you tell is a secret I will keep to myself for now but perhaps you could all hazard a few guesses and post them.