She is at Glastonbury at the moment – so go find her
Much to my delight the results from the National Amyloidosis Centre are really positive this time. The amount of amyloids in my spleen has decreased dramatically. I assume this is down to the thalidomide but it could of course be god’s will. If it is, he surely needs to go back and check his balance sheet again. He really does not owe me. This is actually the first time that my amyloid results have improved since getting diagnosed. The consultant says it’s a very positive result. The light chain numbers continue to increase slowly but she says they may stabilise at a low enough number. Either way, for now, no one appears to be recommending any extra treatment so hopefully I shall be my full on, vibrant self for the wedding. We will be celebrating tonight by sitting in the loggia with a large glass of expensive Italian water mixed with expensive fruit something called Juicy Water (ooh it’s refreshing) with our three cats gleefully fighting and weeing twix Maria’s Mediterranean plant collection.
The visit to the NAC was a bit of a nail biter this time just because I had got in my head to be worried. I had no medical reason so to do but I did not want to the sort of negative news that would mean more treatment and thus feeling ill at the wedding. Our delightful new family (the extended part) have only seen me at my least well and least sociable, probably leaving the impression of a surly, sulky, boring git they hope not to be lumbered sitting with during the ceremony. I really wanted to be able to show off my life-and-soul of the party, proud father, performance in August and not the revival of the slightly bilious, vertigo ridden, grey faced misery of my last showing. Fingers crossed my other consultant does not recommend gilding the lily. For goodness sake I am well enough let’s not go for gold plated well.
When I get anxious I talk, lots. So during the tests I had a great time sharing jokes with an extremely heavily accented nurse. He started off very circumspect but as I responded with clear glee he became more and more confident and outrageous. His intonation communicated the moments when I should laugh and I dutifully did. By the end I really had no idea where we had arrived. I know we started at how hilarious it would be to get patients to race each other up and down the corridor but I believe we ended, I may be wrong, with something quite surreal about Hoxton. Anyway when he tested my blood pressure it had shot up I did not have the heart to say it could have been as a result of my efforts to hang on to his joke. What a great and positive asset to the NHS he is though. I hope I get him next time.
I also talked at length to another nurse about box sets. It was prompted by her American accent which she said was a result of watching too much TV. She was a big fan of House of Cards. We chatted over this while she greased my nipples and probed me with a gadget that takes photographs of my heart. I am sure my preoccupation with waxing lyrical about Kevin Spacey’s to-camera moments helped produce the really good heart results reported by my consultant.
My third encounter was with my regular Romanian nurse who deals with the radio active stuff. She and I have quite a thing going about the Romanian education system something I know something about having had a Romanian friend and colleague at the university. She is deeply unimpressed by our education system – she could take little comfort from me, as all I could do was agree it was crap.
My radiographer was Australian and she had only just arrived. I apologised for the state of the country. She thought I meant the hot weather, she said it was much too hot. Is there a cold part of Australia cos she must have come from it?
This time my consultant was my favourite one with the most wonderful bedside manner. Totally charming. Her parents are Indian. Needless we had lots to talk about regarding weddings. Hers was very small scale, only 150 so she was very impressed with our forthcoming one and wants to see photographs. Her mum had wanted to bring back loads of turmeric from India. She had heard about the recently discovered miracle cure for myeloma ( the other thing I have) using the essence of turmeric (forgotten what it is called again) but her face betrayed scepticism when I showed her my £50 bottle of snake oil brought from Amazon. Still I keep popping it even if it does turn your wee orange.
Anyway – that’s over till February. Both of us get stressed but when we get good news it is worth the stress – and looking back at the whole event, in a sunny lovely part of London, it feels a bit like we have just been on holiday.
I started writing this on the train. Now we are home and yes three cats gathered, yes I have my drink and so far at least no weeing or fighting – the cats I mean.
Lisa, Jack and Arthur are performing at Glastonbury tonight. They are brilliant!
Saw all of them (taking on different roles) on Monday at Guildhall finals – so so proud!!
Toad Hall Stage @9.15pm http://www.glastonburyfestivals.co.uk/line-up/line-up-2017/?stage#toadhall
Teresa May is getting such a hard time at the moment it may be tempting to feel sympathy for her. How the mighty have fallen and all that. She is a human being, she is not actually Satan. She is not a people person and thats not a crime. She grimaces a lot and that is not a crime. She sticks adnauseum to a script and thats not a crime but lest we forget a few years ago she initiated this.
I am at the Royal Free for two days of tests next week. I won’t go into the details but my luggage will consist of two camping gas bottles and a litre of wee. So if you hear of a terrorist alert…
In case you missed it this video and you need cheering up take a look
I am allowed to brag about our family and friends if I check if its OK first. I have and it is.
So…… I will celebrate with not just one, but two of my gushes.
First of all Lisa Marini (with Jack Tustin and Arthur Newell) is appearing at the Glastonbury Festival and the Wilderness Festival. So cool, so proud! – so not going to be at either due to toilet phobia.
Also our dear family friend Ellie Baxter qualified today as a dentist. So many congrats! In case you are unaware it is blooming hard so to do and takes squillions of years of exams.
It’s a long time since I pontificated about anything serious. I admit to some embarrassment at my spouts of yore but they were well-intentioned, if crude outbursts of juvenile dogoodiness. I was only 59 then. Now at 60, and at the risk of repeating myself, like the bore I know I can be (Maria sometimes reminds me after dinner with the neighbours during which guests have literally fallen asleep on the floor – no I jest not) I thought I would set out my thoughts on current events. I do this for the thrill of being able to vent, and because the Corbyn ‘victory’ – and it is a victory in my view, has made me feel happy and mouthy and optimistic and young again.
Terrorists and Trumpists – Much the same thing
I think I know what a terrorist feels like as they blow themselves up. Horny and full of fantasies that they are important and strong and right and heroic and most of all admired. Who does that remind you of? We all remember wanting to feel like that. We might have secretly smoked No.6, or drank pints of Newcastle Brown or read books on swords and guns and heads being cut off or hung out car windows with our sleeves rolled up, or gone to the gym or bought a leather jacket with studs or got a tattoo. I did quite a few of these. The difference, I suppose is that we had our mums and dads and our friends and teachers to tell us that we were being complete tossers. Weren’t we lucky. At the time the mockery is hard to take but if enough people laugh at you when you stick knives down your purpose bought high leather boots (outside the trouser) to protect yourself, cos you are in London and London is full of gangs and you plan to fight them off cos you are tough — and then you show the weaponry to everyone on your course – so they respect you – (someone I knew at Guildhall did all of this (and he was from the Isle of Wight) – and yes we laughed at him – and yes he left the Stage Management course – probably to become a terrorist – derailing my thesis before I have posited it) – then maybe, just maybe, you would think again. Trouble is these men and women are surrounded by people who take them seriously. Terrorists and Trumpists are nothing but more up their arses than most – narcissists – just like most teenagers are narcissists. Amidst the nightmare of all these tear-jerking deaths and mind numbing ‘policies’ (I think policies is too sensible a word perhaps ‘farts’ sums up Trumps outputs (forgive the pun) (disgusting, unintended, impolite, noxious, shitty)) If only we could laugh at them. Not possible of course and probably very dangerous.
I read an article recently that imagined a future from which we would regard nation states and the eating of our fellow creatures as barbaric anomalies. I must admit I agree. While I continue to eat the flora and fauna, the birds and bees (I did once eat a fried bee in china – slightly furry taste) – and I enjoy them with only a miniscule bit of guilt, I would happily see nation states go the way of UKIP in the last election – ie to fade away quietly in the morning as if they nowt but a bad dream. Patriotism is not a virtue! Nation states encourage us to turn a blind eye at all the killings that afflict anyone beyond the white cliffs of Dover. The atrocities that afflict this country represent something like a quiet Sunday afternoon in Syria. While the proximity effect is definitely real, namely we only worry about something if it is near enough to home that it seems worth worrying about, our willingness to utterly disregard the plight of our more distant brethren does seem merciless.
Labour Party – I feel young
I am not proud to be part of any party even the one I pay to be a member of. Parties/Shmarties I say. Tribes and teams are abhorrent to me but I could not help being delighted when the Labour Party, to my great surprise, gave the Tories such a bloody nose last week. I wish I was able to be more like Corbyn and not get personal but is it just me or aren’t the current crop of Tories a particularly distasteful bunch? Gaud what a bunch of old fogies yet so many people voted for them. Why? I am sceptical about statistics but I like to quote the one that says the less well educated you are, the more fearful of change and the older you are, the more likely it is that you will vote Tory. Thus I pronounce myself well educated, fearless and young – which for a 60 year old who failed his O levels and is frightened of most things, is quite a metamorphosis.
DUP – more god squadders in positions of power.
What a horror that the Cons are in bed with the DUP. This is a very nasty party indeed, riven through with religious bigotry. Teresa May has her faith – Tony Blair has his – needless to say I don’t approve of either but compared to the DUP these two misguided souls are virtually Richard Dawkins think-alikes. We still have faith schools, we still have bishops in the House of Lords and we still have too many formal ties to the established church. We have too many churches serving no purpose than to clutter the landscape with expensive to maintain ugly roofs (god I dislike church architecture – all those spires and towers – and have you seen the insides? – someone brighten them up with a bit of Farrow and Ball). On the BBC we have vocal representatives of Anglicanism who are given too much air-time. Like ‘Thought for the day’ that gives dull voice to dull people (granted the odd one is pretty cool – that Scottish Monk for example -but I will set that aside as it bifurcates the trajectory of my rant) and the Daily Service and Songs of Praise are both of which are only out-bored by Money Box live and ‘You and Yours.’ It is definitely time to get rid of Capitalism, Winifred Robinson and God in that order. Sadly neither proposal is on the Labour manifesto. But beware – Daily Mail Readers and Winifred– if that man gets into power, well you never know ….
Decode this dear linguistically literate readership
oh dear – my last post was a grammatical ‘casinò.’
too much to leave to posterity even for me
i have updated it.
my horrible e-mail alerting system sends you my finely wrought aphorisms as tsunami of Woolfian cobblers – i have amended it http://188.8.131.52:8080/wordpress/index.php/not-blogging-but-writing/ so that its sends the link rather than the text in all its chundersome glory.
As you know I go through phases and my current phase is to write short stories for the phone box that feature a character called Tuffin. In fact I have become quite obsessed churning out about one or two per week plus other short stories. I have been getting some fantastic advice from my siblings, my children and their partners and as a consequence, even I think I may be getting a bit better. I am very needy indeed, so if you like any of them let me know, but if you don’t, then don’t. As I get more into writing fiction my devil-may-care attitude of “Oh I don’t care what other people think” has started to wear away. This is most regrettable for all of us and particularly you, dear readers.
In think Tuffin is a version of me if I had not met Maria and had stayed in the house I was born in and emotionally rotted. He is both likably eccentric but also dislikably ‘locked in.’I suppose he is the teenage me made old. He lives an insular life, doing things that please him but that have no greater purpose or design. He observes people closely but really does not understand them, he thinks he does though. He likes toys and sets and collecting but not in a methodical way, just in a way that helps make sense of the world in his terms. He is 60 in the 60’s – an era I think I belong in. Anyway they are here, if anyone can be bothered http://184.108.40.206:82/wordpress/category/tuffin/
After 2 years the Teddy poem set of 12 is also complete and illustrated to my great joy by Pat McCarthy – but you will need a password to see them – send me an e-mail and I will let you have it – email@example.com. I am keeping them under wraps until the illustrator and I have decided what to do with them – so please don’t pass the password around. http://220.127.116.11:82/wordpress/category/teddy/
My health is excellent although my numbers get worse again cos I am off the drugs. The main thing is that when I need them, they work, be it that my misguided body seems to think I should pay for the privilege of survival by feeling fairly crap . There is new research on a treatment for my cancer that is centring on a molecule in Tumeric. It was featured on the Food Programme – sounds very promising – but as with all treatments it works for some and not for others. Interesting though. I shall be eating a lot of yellow food from now on. Course it may be a faddy nothing – my faith in anything but the strongest and most toxic man made compounds is limited probably to the annoyance of Art and Lisa.
Maria and I had a brilliant couple of days in Lewisham seeing one pair of my lovely boy and girls and their heavenly abode full of really interesting people leading very alternative and cool lives, followed by a great gig and a lovely lunch with my sister, her husband and Lisa’s dad. It was a really fun couple of days. I envy their very sociable lifestyle in theory but in practice I don’t think I could cope with the 24 hour commitment to sociability – I am much too grumpy and insular (see above).
Met some amusing taxi drivers. One knew all places I knew in SE London and Kent. He had my original Swanley school accent, the one I had before I got gentrified by Glyndebourne Opera and a lack of self-confidence. He knew the pub I had collapsed in as a boy drinker. In/ie really in, a urinal if memory serves. In fact I began to think he might be a relative or an old school friend. He even knew the mental hospital my grandma had been incarcerated in. Oh how we fondly reminisced. The other Taxi driver told some fine stories of how he threatened to ‘eat someones face and feed it to his wife’ for what, I could only figure to be – “being posh and living in Clapham where he used to live with his nan who was not posh but salt of the earth, you know a proper English Londoner.” I told him I was a member of the Labour party and was pro immigration and despite that I respected his opinions – which I didn’t at all – but he was pro Trump, UKIP and hanging so we bonded in that way that only fear of having your own face bitten off can bring about. A good healthy tip later, my soulless, cowardly sell-out was complete, but so was my face.
I have my Labour party poster up. Probably the only one within the Appleton Conservative getto. I am rather excited by the election now that it looks like less of a rout. I have some faith that when people look around and see what right-wing politics is currently doing to the world, they might just start to think about being a bit nicer and a bit less me me me.
That said, Dear Reader, bye for now from me me me.