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.
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.
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.
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.