Health +

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.

 

Two weeks off the drugs!

I have two weeks at least off the drugs. I already feel a whole lot better and it’s 4 in the morning of the first night/morning. Along with all the other good things the thalidomide acts as a sort of sedative so you feel in a permanent stupor. Now free of stupor I have written a short story and I am raring to go somewhere, don’t know where or how or why. Since January I have lost a stone in weight, I could afford to do that though, and I look distinctly greyer and a bit unwell. My chicken legs are more chickeny than ever and my arms look like Victoria Beckhams but without the muscle tone. So I need to get back to my distinctly flabby pinkness by moving about a bit and eating.

BTW I am going to change the content of this blog in future. Family updates will henceforth be by private e-mail to family and friends. That way I am not boring everyone with the exploits of my deliciously successful and loveable family. Instead this blog will take as its primary subject me. That was always the intention and I got lost in a wave of showing off about them. So unsubscribe immediately if you can’t cope with a monthly update on yours truly. Don’t start thinking what a big head and he doesn’t give a toss about anyone else, he does give a toss a big toss but he is no longer going to write about it here. License for unconstrained egotism.

Now cats, that’s an all together different thing.

Vince has a plague of ticks. He gets them from his nightly jaunts to see the sheep. His ear is covered in monstrous engorged specimens that leave him fur free when they drop off. He is smart cat though and Maria’s efforts to douse him in the appropriate remedy have led to some sophisticated avoidance techniques and not a little outrage. So far she has only managed to squirt something noxious onto his back which appears to have done no good at all. We feel sorry for him because they must either itch or hurt. He does not appear that bothered, more bothered by the attempts at a cure, but he does make for a rather medieval impression lying by the fire covered in blight and scabs and little insects. Not exactly designer cat.

I will catch up soon when I am less hyper.

good numbers

I am very pleased to report that my cancer numbers continue to decline dramatically – so the thalidomide really does seem to be working. The numbers are back to levels I have not seen since I was first treated and each course roughly halves the offending light chains. What does this mean? Well of course it is not a cure. I am stuck with these conditions for ever unless a cure is discovered but while it is held in check I am likely to be able to lead a more active life (ha ha) and not feel so rough. Of course the cancer will gradually make its way back and each time the doctors will weigh up what treatment is best to push it into remission again. I suppose repeating the same treatment is not always the best thing so it may be that they ring the changes. Who knows, but in any case I feel very grateful that it is working cos there is always the possibility that these treatments don’t – so I am a lucky bunny.

I was really sad to hear that the broadcaster Steve Hewlett had died of oesophageal cancer. I had been following him avidly and we had corresponded through Twitter. If you have not heard his broadcasts on Radio 4 they are all available as podcasts. His attitude to illness chimed exactly with mine however he was a lot braver and was facing a much grimmer scenario. Truly a great piece of journalism and a model of emotional restraint and good humour. I am so sorry for his family particularly his boys but hopefully his plain speaking attitude to his predicament made his death a bit more bearable for them. He was so free of crap it was inspiring.

It is lovely to hear bits of news from various readers. Please keep em coming. It’s been quite isolating, not being able to drive since January, not that I am sad or anything but just feel a bit disconnected from all the exciting things people are doing. Strangely I have no desire to join any of you, nor in fact to see any other of you, just knowing what you are up to is enough.

Latest drug haul

 

My latest drug haul. Possibly only another month to go before I get a break. Consultant of the soldier-on view, it’s doing you good, so if possible put up with the side effects. I agree I am not in any pain or anything really nasty. I just a general sense of not wellness that pervades me with a ducky tummy and a spinning head. The real frustration is not being able to do anything for any amount of time. I am more of a bed bound butterfly than I unusually am.

Family news for those that can bare it. George and Avani’s wedding plans go ahead splendidly. Lovely big venue with lovely outside areas. They are organising it with great love, thought and care. I must admit Maria and I were it bit slapdash for ours just relieved to have persuaded some mercenary and incompetent vicar that both Maria, a Catholic and me, an Atheist could legitimately be married in an Anglican Church – a few spondillies settled the matter and Christopher “Leonard” Newell and Maria Bo”h”vino were married on the 27th August 1983 and have remained so ever since – ahhhh

Other family news – Lisa Marini is back from Bali tomorrow after 6 weeks. We are really looking forward to her return not least because we love her dearly and Arthur has been looking forward for the last 5 weeks and 6 days 23 hrs and 59 minutes. He was worried about achieving nothing while she was away except a heavy heart and a tear stained drum kit but he has pulled him self together and – (over proud parent moment coming up) – achieved all firsts in all his performance exams over all 4 years which has got to be good. It matters not a jot to his future career as the Jazz world could not give a toss about what degree you have or whether indeed you have one just whether you can play – a judgement made on the spot – yes hire – no don’t hire. He talks less enthusiastically about theory and essays which will of course ruin his career . On that subject he has two prestigious gigs coming up with the Matthew Read Trio

Ronnie Scott’s (late night slot ) March 27. Not the intimidating expensive downstairs bar but the seedier realer place upstairs. He needs to do a few more years yet.


The Bulls Head Barnes March 28

Both venues have very posh restaurants and great locations so you could always make an evening of it or in the case of Ronnie’s a very long boozey night followed by some prostitution. However take your Amex platinum with you.

We hope to go to Ronnies, if the old man can make it in one piece, and stay in a hotel in Soho emerging from bed to go to gig and then retiring before the jam, the shootings and the drug taking that follows. Anyone want to join. Starts about 11:30 pm though.

Nothing much else to report. We have bought a glass door cabinet for 99p for eBay as my lighter collection continues to expand. The American ones are the best but you have to pay 25% VAT on anything over £18.00 plus £8.00 handling from parcel force so I have to make very cheeky offers to my American sellers who I must say are universally good natured about it, admittedly as they decline my offers. My latest pitch is for a pink Evans set with ash tray and cigarette box – devine darling and only a bit chipped. The cats continue to jostle for power like trumps cabinet . Bobby keeps loosing status and pissing – last time was on Vince’s food. Maria gets hysterical I can’t smell it and kinda don’t care.

Bovril and sherbet dib dab

So my cancer remission results are looking great. Numbers almost back to the levels of 2 years ago and this has been achieved after only two courses of thalidomide – so all the other bad stuff is definitely worth it. Besides I have enjoyed having a good moan. Bowels having dropped out, are now chilling out so other than an arse that looks like the Japanese flag I am intact and very optimistic.

For those of a scientific inclination you may wish to find a pattern in the following foodstuffs. These are the things that don’t taste vile after thalidomide

Bovril, tomatoes, lettuce, clementines, dhal, plain pasta, rice, sherbet dib dabs.

Just about everything else tastes either like wood or like acid. Chocolate for example would probably make me immediately sick.

So a better day today. I am up and at my desk. Very washed out with no energy but mending nicely. I may have another two months of this regime but hopefully I will be raring to go for the carboot season. I will have to go on another cream cake diet as I have lost weight.

Cheesy Wotsits

I am pooping cheesy wotsits. It’s true bright orange floating wotsits. I was rather hoping they were lurid cancer cells I was attempting to flush away but no. After spending two days on the toilet the impression any passing voyeur would have would be that I have been enjoying a secret cheesy wotsit binge climaxing with a celebratory unload of wotsits down the pan. I have never had such lurid poo it looks positively radio active. I am pretty poorly. The conclusion seems to be that I have caught a stomach bug that combined with the ludicrous cocktail of poison has led my system to pack its bags and leave for Alabama where the good Christian folk live. I have psychedelic guts!

I am now fully on my back in bed with my lovely ginger cat, moaning, both of us, him with pleasure me with moan. He will occasionally extend a paw to my cheek to comfort me but gets annoyed at the 20 minute trots. He enjoys a paw massage which I have never experienced with a cat before. You rub each pad and claw and extract any mud or surplus fur, he closes his eyes and basks. I can’t face doing much, all my teaching is cancelled, postponed or dead in the water. The drugs are doing great things I gather so I am not at all sad, just ill – big time.

I can’t even face the news. It just feels like Netflix political horror box set. What nasty nasty people the powerful are. I cheesy wotsit on the lot of them..I have been reading the guardian online every morning for the last two years and I think I have had enough of hearing my own smug voice reflected back by the even smugger voices of Guardian Journalists and even worst smuglicious readers. In fact I think my enthusiasm for trying to engage in political debate is at an end. I have gained nothing, I can see no way of shaping the world in the way I would like, and I think I would find more valuable insights in a novel or a poem or a rom com than the news. So it’s official I give up. I leave it to those who can be bothered with the ignorant mind numbing nonsense of Trump and May and the other phonies to pursue change. I retire to my family, my cats, my poems, my stories my voices and my telephone box. I shall surround myself with the dreamy, if selfish reassurance that the world that matters starts and ends with me and those I love. Tough luck world! I am dead to you and it feels really good.

Btw. On close examination the cheesy wotsits were clementine segments direct from mount to pan. How dull.

I am falling to bits

The thing about chemotherapy is that if you are lucky it works – in my case brilliantly – but whether it works or not it likes to leave an impression. So I am peeing blood, my heart is pounding like the flying Scotsman and I am as stoned as Jimmy Hendrix. So an infection and heart issues – great! Basically I am falling to bits while being rebuilt. My consultant is clearly very pleased with the results, concerned about the side effect but basically of the view that I should stick it out – so I am. At present I have trouble walking to the garden gate (were we to have one) so going to Hull and teaching is, somewhat with regret, out. Needless to say this is really tough on my already overstretched colleagues and I do hope to provide some virtual teaching if it can be set up.

All in all an encouraging consultation but I still feel like a proper 60 year old, you know the type, Grammy leg, dodgy heart, always moaning about their illnesses – I’ll have a Pale Ale.

Marmite and Coke and head in the shed

I have entered a short story into a competition. The subject has to be food and drink. The prize is £10,000 and it is to be judged by Mary Berry and Phillip Pullman. This is my entry.

 

ARGGG – just realised it breaks the rules of the competition so I have had to take it down – sorry – it is brilliant

so instead…

4:00 am Monday – My room is part of my therapy.

This is to be my first and last self help guide. I shall adopt a circumspect and slightly smug tone.

As you know I have cancer and when you have a serious illness it is suggested that alongside conventional treatment you should also retain an open mind about complimentary therapies. Many of these are provide by the NHS for free and they include things like Raiki, aromatherapy, foot massage, head massage as well as talking therapies and group therapies. I had a go at a couple but didn’t get on with them at all so I thought it might be useful to share with others my own alternative therapy.

I will call it shed therapy

I am very fortunate because I have all the normal necessities and my beloved family around me to keep me sane and happy. I would add to this one more thing that has been fundamental to my mental health since I was about nine years old, a house big enough so that I can have a dedicated me space. These spaces are my rooms, or if you prefer my sheds

My sheds are two spaces but they operate as one. The physical space is as you would imagine a room in a house while the metaphysical space is a room in my head. Hence head in the shed (meaning lost in crazy self contemplation) I hate the term man cave for the former but if it helps you dear readers to think in such crass terms then be my guest – a man cave it is. Since the age of nine the physical space I create is orderly, clean and tidy but exceptionally full of stuff. The order is apparent only to me. For example without counting them I would say I have something in the region of 50 drawers in my room of various sizes all containing critical bits and pieces mainly of a technical nature. Most of my furniture is on wheels, the idea being that I could wheel it all out and create a rehearsal space, an idea long since abandoned. I have two scaffolding poles the length of the ceiling, put in when the room was being built that allow me to trail cables across the ceiling and hang anything I like from above, speakers, lights etc. The room has a concrete painted floor so I can freely drill and burn and solder and do all those other man cave things. It is on the ground floor in the centre of the house next to the kitchen so household hubbub is a comforting background buzz. It is paradise.

It forms the perfect analogue of my head. All the things that fill my head fill my room and vice versa. If I am dreaming of theatre I have theatre models and props, if I am needing music I have all the players and instrument. If I need to write I have pens typewriters, rulers, staplers, guillotines, Prit and drawing boards. I have hundreds of tools, gazillions of cables, all my lighters and phones. I have a work bench a vice, a magnifying light. Filing cabinets, books and records. For nourishment of mind and hand I have absolutely no need to go anywhere else. My creative life is completed and rounded by these two spaces. I cannot imagine why, given this incredible abundance anyone would need to travel more than 50 metres. I hereby declare that I would happily live out the rest of my life without moving out of my sheds except to watch telly and barbecue in the summer .

I cannot recommend it enough.
So feeling blue, stressed, or just plain poorly get yourself a shed and pour the contents of your head into it.

Back in the illness bubble

I am back and the important thing for me is to just accept it. No good getting fed up as your face caves in and and your bladder and your sweat glands explode better to just just laugh at the absurdity of a night spent rewriting Beatles albums on a hallucinatory loop. It’s a fascinating place. First of all I am fully aware that I am hallucinating, always have since a child if my temperature went up, despite awareness I cannot accept at the time that the hallucination does not have some sort of useful and logical purpose. As an exercise I shall attempt to write it down.

I have been here before – raging temperature
If so why didn’t they put it in the right order (they refers to amorphous medical experts)
Ah yes I will put this one first before that one, that’s what they said
Ahi that’s better, comfy now
(A few minutes rest)
Wake up
Have a wee
Repeat until morning

For anyone who has not experience this let my explain it is not fun. It is like being stuck in a Christopher Nolan film but with no guns to get you out.

I have never sweated so much ever, I get through 3 tee shirts a night. It’s a vicious circle cos as you sweat you need to drink creating more fuel for the sweat glands, and as you drink you need to wee thus you are effectively acting as a bed bound water recycling plant.

Yes I am now officially a post human again. Kept alive by technology and whatever resistance my body can muster. The technology is amazing and I am so grateful and happy as it gives me reasonable prospects, a good spirit, continuing joy, life, life, life – it also makes you feel physically ughhhhhh… And I make no bones about that – dizzy very, belly ache, brain addled, tired, achy, fluey, pissy, non pooey, hungry but kinda special and kinda amazing ( I repeat myself) amazingly lucky.

So the right wing and capitalism has finally won and we have no middle man between money and power. Trump is the golden calf and should rightly enjoy being worshiped on behalf of the thousands of years invested by similar minded less golden calves, whose only aspiration is to be as golden as him. Why has this all come to pass now . It easy in my view. Since 911 capitalism has been afraid. Afraid it was going to have to start to think about giving back some of what it has stolen, afraid of the chaos that the wrong sort of religious bigotry would bring about. It’s reaction is like our ginger cat, when it gets afraid it pisses itself and its hits things. Capitalism lashed out, blamed everyone other than itself and settled on a few particular scapegoats that made easy targets – refugees, religious minorities, Mexicans, disabled scroungers, poor people etc. All the time stirring up fear in order to divert people from the real problem which wasn’t fear it was greed. The greed that created a word of such staggering injustice that no adjective exists to describe the staggeringlyness of it all. Stamping on one group of murderous arseholes will not get us anywhere until the current group of murderous arseholes are deposed or admit they got the whole thing wrong. With the likes of Trump in power I guess that we may have to wait a bit longer yet and that means more Berlins. What a mess.

Talking of messes. Why do I keep mucking my websites up? Well it goes like this.

I get to the end of a long day of project tinkering. I am just about to retire to The Gillmore Girls. I see something temptingly easy to fix – a misdirected link – I click to fix – bang – something else happens unexpected – by now I am tired – I try a few stupid things in desperation as the title music for Gilmore Girls swells up – more unexpected things – bang bang bang – I have broken the whole thing and no way can I remember how to fix it.

Later that day I get a very nice e-mail from my niece who has been trying to access my site – “is the problem at her end” she asks benignly – I want to kill myself for my own stupidity.

At the end of this blog is the technical explanation as to why I get confused and keep messing things up.

The Strictly finale was truly amazing. Production values and choreography through the roof – why oh why do people sneer at light entertainment – in my experience it blows most serious art out of the water – name me one degree course in light entertainment? – now name me less than 1000 degrees in drama. Time for a change?

This tiresome distinction we make between high a low art really has no values unless you are a snob. High art derives influences from popular art and vice Versace ( leaving that typo). It always has. Monteverdis operas took inspiration from popular songs forms and bawdy comedies, Mozarts from the music halls. I quite dislike people, yes I really do I have concluded, who make this distinction, who pride themselves on only listening to a certain genre of music – either way is just as bad, oh I can’t listen that posh stuff or I can’t listen to that its all just noise . For the sake of your ears and your brains just open them for once. Popular culture and posh culture are all the same – just great noise. There is no such thing as art art is just stuff just like you and I are stuff.

X
TECH BELOW

• My sites are run from my own servers at my house on a fixed IP address that I rent from BT
• At the time that I set them up needless to say I did not have much idea of what I was doing so I ended up with several Apache servers rather than one each one operating on the same fixed IP but from different ports :80, :81, :82 etc
• Not ideal and for sure there is a better way but too late now as I cannot be bothered to change it
• I bought the domains gravityisahat.com cancerwithoutgod.com and fleeting.eu separately without web space ( I am providing that) and then using the control panels provided by the domain sellers I direct the domains to my servers using the fixed IP plus the port address.
• At least one of the domain sellers systems does not accept ports as part of a redirect
• Thus I have to create bounce pages from the main IP to the port address
• Some browsers don’t like this
• Some mail server don’t like mail arriving from domains to which the main URL is not associated
• Any changes you make take up to 48 hours to populate across the web

HENCE THE AWFUL MESS EVERY TIME I TINKER SORRY SORRY SORRY I get so embarrassed by my incompetence. I just want you you all to get my news and I make such a dogs breakfast of it.

Its the drugs! again….

The winner = ‘Flatulence’ submitted by JAA

This is a very dull post. Sorry it’s the drugs.

I thought about sending out Christmas Cards like last year but anything I came up with seemed to be feeble when compared to the ‘Mitch with rabbit entrails,’ I sent last year. I just don’t think there is a better Christmas card lurking in my or Mitch’s imagination. You will have to make do with the delight above from the Guardian.

Caption please??

Santa came early for me with a sack load of new drugs including Thalidomide. I have already overdosed by accident which caused me to slide inelegantly off my chair onto my office floor. No damage, happily but a reminder to check my spread-sheet more vigilantly. Maria shouted at me with the love you reserve for naughty children that nearly get run over or rush to embrace a fierce Alsatian. I recognised it immediately and appreciated the verbal slapping. Well deserved. What a plonker I can be.

 

George and Avani are in Sri Lanka sauntering with Elephants and fifteen members of Av’s family. They seem to be having a unforgettable time and we get frequent pics of sauntering elephants on main carriage ways, most bizarre. Not pattable I am told. Arthur and Lisa are still rushing about. They have done a radio gig, or maybe that was Lisa on her own, anyway when I have the link I will put it up. We expect them next week and George a bit latter finally Avani after Christmas. Hopefully the odd few days in the middle when we have a complete set.

Maria DOES Christmas. I spectate and contribute literally nothing bar purchases from Amazon and tempered disdain. I am just too lazy. I love the fact that the family love it so much and it is an amazing show, but I have to confess I find Christmas quite tiresome. I love the family here, the talking, the odd pressie but all the ritual decorating endless cooking and making big is not my cup of tea. I would like people, the telly on, if pressed a trip into town for a coffee, a few good pressies and then life as normal just with everyone here for a good long stay. No Christingle, no carols, no Michael Buble, no lights, trees, CARDs – bloody hate the things, unexpected guests, delighted little children, Boxing Day walks, new year resolutions particularly diets, good wishes or any kind in fact any mention of Christmas at all.

Things I really like at Christmas include – snow, when our cat ate tinsel and it hung out of his bottom, me getting presents that are not soft, smelly or edible and preferably made of metal and wire, taking everything down and burning this years cards.

Life is good and I made it through a semseter’s teaching with a just a few odd days messed up by incapacity and hospital visits. I think I did a good job. I was an enthusiastic and , unusually for me fairly competent teacher. I have made good use of the Uni technology to make my life and theirs better, I hope. I have a really good module to teach next year which allows me to play with lots of contemporary art and new technology and I am really enjoying swatting for that. The marking is tedious and I often think the amount of feedback we are required to give a gigantic waste of time. Most students are happy with a mark and a chat – both are crucial, but an essay from your lecturer is not – so I don’t do it.

I continue to experience issues with my mailing list. I have lost track of whats going on now so apologies if you get nothing, something, many repeat somethings.

This time the drugs are both exciting me and slowing me down. The result is a slightly befuddled state. I am very forgetful and easily muddled. Hence this blog is passionless and respectable in a fairly unpalatable way. I will wind up or wind down for now .

ZZZZZZZZZ……

Ps. Did i mention that our drone lost in a tree for the entire summer has fallen down and not only does it still work, survived being shot by George with an air pistol but the pictures and videos it took survived as well!!!! I will write to the manufactures in China and congratulate them – truly amazing for a cheap plastic toy.