Daily update

The massiveness today is its Maria’s last day at work – she has retired or is retiring when you read this. I think it best to ask her how she feels about this because I feel it’s probably my fault. I am very happy about it but perhaps I shouldn’t be. Somehow we must party tonight!!!

Thank you all so much for enduring these lurid excerpts from my cancer diaries. According to Sis A the titles could make for a collaborative surrealist poem. I love that idea.  Particularly as someone else does the editing. I sense that some of you are worried that your news of all the exciting things you are doing that I can’t do, might piss me off – they don’t at all – please keep them coming. Your random news headlines are like gifts to me.

Since yesterday my appetite has tailed away to zero despite the regular anti sickness treatment. I really don’t like this as it’s hard to do anything with an imminent puke on the platform waiting to pull away but I am getting used to it and hope it will diminish in time. The last cycle was terrible probably cos of the Covid vac so I am hoping for a more mainstream journey this time.

Maria is at work today but the lovely J next door (now on this mailing list) keeps checking on me via what’s app so I feel very comfy.

Maria went through hell trying to juggle her responsibilities on the last day playing for exams etc and being here for me. I was absolutely insistent she went. I relish the care she gives me but I do take advantage – I can get my own water refreshed – I can open the door for the cat I am just idle and needy. I am really happy she’s there to close the circle properly they have speeches prepared and whatnot. She can’t miss that although she would like too.

The district nurse Julie just dropped by to adjust my catheter. It had dropped off last night and was tied on by a brilliant silk tie from 1980 I had attached this morning. It’s loads more comfortable. No more rasping and tugging no more pink wee, Happiness!!!

I have been buying opera DVDs from Ebay – so cheap – I would describe them as the sort of German challenging classics I have always vowed I enjoyed but really I endured. Berg – lulu and Wagner – the ring complete. I have an ancient Mac laptop that has a DVD drive so I can watch them in my bed conveniently placed to capture me as I pass out after 15 minutes.

Sometime ago I bought Samual Becketts film collection -blooming not cheap – same category of pleasure anticipated. They are quite short of course, great cultural capital.

Sickness is waning so time to top it up with a blockbuster chemo tab – dreading it.

Seriously, don’t read this. This is not a marketing trick.

Yes the bed was the recipient of a pint of old man pink urine.

Poor poor Maria.!!!!!

Anyway we had enough protectors to not get to the mattress itself but it’s 30 years old so it’s going anyway. And it missed the duvet miraculously.

G,A,L,A this all relates to our bed not either of yours.

The levels of indignities really stack up with this kind of illness and subject to the durability of your loving carers the only thing to do in my view is not to despair and if you can, laugh. In this case it’s just not funny. Flashing your bits to your daughter-in-law (L was the recipient of that last visit) is just about funny. Or I hope it is?

Maria’s morning of tomato plant transfers evaporated in laundry liquid and bleach. I watched Bourne 3. We had a routine treatment appointment at 1:00 which progressed quite well. I am no longer allowed to self administer because they want to close monitor me after my platelets plummeted. So we have to go in twice a week, bloody awful for Maria, I don’t mind at all and she says being the saint she is that she doesn’t mind either. She does get her Italian homework done to a level her teacher must be super impressed, if somewhat overwhelmed, by, given the amount of marking required by her most diligent student. (Sorry G)

Anyway the only surprise at the hospital was the wonderful dr alia had managed to pursuade nurse happy (that’s her name) to fit me in for a last minute (un heard of at York MRI. They need to know what’s going on in my bladder so I am very grateful she has pushed it forward – she spent literally the whole of yesterday afternoon on the phone. I love her.

I admit my weaker self emerges nearly tearful, and scared with MRI – not the results, they will be what they will be, the actual procedure. And the degree of ‘I want my mummy, can I go home’ is inflected by the amount of time I have to stay totally still with bad back ache which in this case was to be 90 minutes. I have never had one this long. I don’t think it’s unusual, but for me it was unpresidented and I was momentarily ready to do a Bourne, knock the staff unconscious with my ju-jitsu and escape to Tangier.

Then miraculously I was delivered a restorative gift in two forms. I had a big bottle of opiate liquid with me and some paracetamols. Slugged em down like a heroine addict in the changing room.    2nd. I had forgotten the liberating effect of the catheter together with its accompanying nappy to catch the pink leaks. I was free to piss, leak and even poo anytime. It took them 20 minutes to find Radio 4 but by them it was chilling to the accompaniment of “reversing lorry in my bedroom” and “council workers like to drill.” The standard MRI hits.

Back to haematology to get my next dose in the belly and collect my quota of drugs. All good, got a cup of tea shortbread biscuits and some crisps.

Back home to Bourne. “She’s standing right next to you.”

discovered that it was my nappy that was causing the catheter chaffing rasping. Did some reconfiguation much better.

Ate some sea trout.

12 hrs later woke up – bed and self completely soaked in sweat. Vinnie not happy so he has decided to sleep more or less on my head. Like he is on desert island, you know the one with the single palm tree.

vinnie left early slightly damp.

18 hrs later – sickness kicking in – no prob I am ready this time.

Don’t read this if you are sensitive to the language of toiletting or squeamish about medical procedures.

I thought it might be fun to relay the progress of this cycle of chemotherapy in a certain amount of detail because according to the nurses it has been quite unusually full of incident. Oh how we laugh!

It all starts way back just after Christmas with an MRI in Tescos car park. The assumption was that something was growing that was causing me back pain. That was followed by one dose of radiotherapy which as far as I am concerned didn’t really do much but of course I may be wrong. As part of that process I was prescribed stronger and stronger painkillers till I ended up with quite a pharmacy full of different varieties and a brain full of mush. They were worried about addiction I was worried about constipation and then sickness and just a tadet about Alzheimer’s as Maria witnessed me incapable of remembering anything of consequence but bizzarely able with the German conditional tense…mmm.    all in all someone was worried about something. Since then I have been able to reduce the dose and I am now on just one remedy at a low dose.

In the gaps between hospital visits have been getting stuck into Wittgenstein. Should you be wondering if you have Alzheimer’s or are just a drug addict this is not to be advised.

Just had a very satisfying poo which is one of the great rewards of my current life. Particularly given that the catheter feels like it could interfere with that process, happily it seems it doesn’t!!

 As the opioids can make you sick, reducing the dose is a good thing because as the first proper cycle got established nausea became quite a big issue and I started to assemble a good number of anti sickness remedies to counter the fact that I stopped eating pretty much completely. This escalated toward constipation which I countered with mega laxative doses. The most  effective was 6 sachets in a litre of water over 90 minutes however that was dependent on me not being sick. Quite a predicament.

 You can see where I am going with this. It became an act of juggling variables, a bit more of this a bit less of that. Maria did a lot of the decision making, as I struggled to keep up with it. During this time I resorted to a wheelchair mainly because with no food at all I felt like I might feint.

There was a strange pause that occurred when A&L came up and for 3 days my apetite began to return only to stop again once they left. Eventually it has returned to 50% but more permanently which is fine and normal with this chemo.

Alas the next strike was not peeing and this was the worst. 4 nights ago, it stopped. We went to A&E and almost as soon as we went through the hospital doors it started again and I was allowed to go home. Next night it stopped again and this time it really hurt. Went to A&E again and they measured nearly a litre being retained. Apparently that’s a lot and I was relieved that I was actually ill not anxious although I am always both. They were amazing and within 30 minutes I had a catheter fitted. The relief was unbelievably intense. The experience of such incredible intimacy administered by the nurse should have been weird but to be honest it wasn’t really. I know I shouldn’t mention this but the nurses were young and female. Had I viewed this from a theoretical perspective before it occurred then I think I might have preferred a male, but as it happened I did not care a jot.  It was very professional but yow it hurt. It bled a bit so I had Barbie pink wee for a day. It’s all strapped to my leg like I am the terminator with cables and tubes powering me. It has a tap to empty it down the toilet and although I can’t recommend it for comfort and style it is very practical and has meant I have had two nights of more of less uninterrupted sleep which both vinnie and I appreciate enormously. You can bathe with it on and obviously hygiene is a high priority.

Anyway this development triggered a bit of an alarm with the haematology team who of course want to know what the hells going on and why. I am just content to have a solution to the pain but the result was that yesterday, the third consecutive day we spent at the hospital .

Oh no. I am in bed. The valve has got knocked open. FLOOD.!,!

DISASTER.

So sorry Maria.

Yes,  not the best design, somehow it’s emptied into the bed.

Fuck.

Will update after the 4th day at the hospital and day 1 of treatment cycle 2 – 16 more cycles to go.

Chris

I am experimenting with writing as if i were Mahler writing the 10th symphony while suffering from throat cancer or Mozart dictating the Requiem to Salieri on his death bed and discovering i am not up to it. Not a hero just a big baby. So here goes with a blubbly moan

I was fine yesterday first thing. We had agreed with the cancer team that I would have a Covid jab in the morning as they have never troubled me greatly. This was followed by an afternoon with the obsessively punctilious Rob showing me how to inject myself in the belly for the second time with a (new to me) chemo treatment. I have one more exam before hopefully being able to do it myself avoiding two extra trips to the hospital per week. Things have tightened up loads since I first did the injecting 10 years ago, it was all much more slapdash. I remember feeling very unprepared, this time i am too prepared and it makes me nervous and less efficient. Eg. Now if I spill any of the drug I have to put on full protective gear and a mask and use a special kit to clean it up. Its like a nuclear incident. I had never really taken on board that all the drugs can induce cancer as well as cure or in my case slow it down. Anyway Rob went through it, I did all right according to Rob, probably about a B- and I was sent home feeling fine. By the evening one or other of the drugs started to get grumpy and I started to get proper poorly. Sweating like I have never ever sweated or not since hooping cough in 1960, hot and cold, shakes, diarreoa, zero apetite, muscle ache (all pretty standard stuff for the covid Jab) but with the other stuff it’s been like a bulldozer bucket load of symptoms all vying for presidence. I also managed to forget my opiate which started to give me withdrawal (probably imagined) and I wanted my mummy and felt teary. St Maria is an absolute absolute complete total Saint and my gentle but unstoppable collapse over the  12 hours was scrupiolulsly monitored by her until about 10 minutes ago when I started this and I think I am getting better. So lets do a fact check – actually it hasn’t been as bad as many people experience even with just the covid jab – I am not in screaming in pain at all – I just feel ill – like pretty bad flu. I have medication to do everything but while they don’t actually conflict to take an anti diarreoa with anti constipation cant be easy for your system to deal with. So I think it throws up its hands from time to time and just panics and so do i. I feel like my body is running like an overwound clock and any minute a load of parts will go flying round the room embedding themselves in all the soft surfaces.

Its getting more and more likely that I will cancel the NAC trip. It would be absolute torture in this state and of little value but I won’t decide till Monday.

Last week I did nothing much creative (no 10th symphony for me)  just keeping up my German practice in tiny doses. I bought a beautiful second hand scholarly edition of Grimm fully annotated but I still think G’s distillation of Grimm is perfect. Better than the Harvard professor that wrote the book and a load better than ASByatt who provided a much too clever dick forward.  G is referring to ‘Hans my Hedgehog’ one of the wierder ones.

‘I really like the specificity of the unlikely details and the matter-of-factness with which they are presented. The morality of the story seems to me secondary to the more fundamental Grimm worldview, which is that people are arbitrary in their wants and actions, that injustice and danger are waiting everywhere to punish you for daring to be alive, and that to succeed or even survive you need to be both pretty wily and, even better, lucky.’

 Coincidentally H has been corresponding with me about my current state, always a delight and always helpful and I was looking for a response to her complaint about injustice – ‘its not fair’ which she freely admitted was unhelpful. Setting aside helpful or not it caused me to think about fairness and I realised that admidst so many other complaints about my circumstances this is one I don’t have in my grump arsenal. Unfairness can only occur against a moral backdrop that is shared by a community. My community, ie the one I subscribe to in my head has no moral backdrop and is pretty much perfectly summed up by Grimm according to Georges analysis. So no wonder I am so attrated to those stories not just stylistically but also philosophically. Mind you big bad mark for some gross antisemitism and christian cobblers in some of the stories. Oh btw – I have abandoned reading them in German and gone back to ‘crimis’ – it was too exhausting figuring a translation for hedgehog dung.

So i sent down an order for boiled egg and soldiers via alexa so things are definitely on the up. Unfortunately I have still to take a bunch of nasty stuff now to accompany my boiled egg so I am not looking forward to the outcome. Nourishment I am told is important along with hydration. The advice is to drink loads and eat whatever you fancy whenever you fancy.

I must admit this seems to have been a very worthwhile experiment. I feel physically and mentally a lot better. No requiem dictating yet and roll on another 11 years if I can just learn to endure feeling a bit ill most of the time.

Thanks for reading xx

‘

I am going onto a variation of a treatment I had back in 2014 with an extra component that became available in 2016 that I haven’t had before. I have to inject myself in the stomach again and the side effects sound a bit nasty but who cares. It’s guaranteed constipation or diarrhoea, one or the other, so I am hoping for the latter because i am neurotic about the former. Whatever, I am happy to have something new to try as my tolerance of the treatment I have been on seems a bit low. I have been feeling pretty ill for several weeks now and since stopping it I feel better.

Boy am I fed up with talking about being ill. I hope you aren’t fed up with it too, but it does make me feel so much better to offload even knowing that my audience is probably groaning at my moaning. BTW: That’s about as poetic as I can manage at the moment although I did write a story that I am really pleased with.
https://fleeting.gravityisahat.co.uk/2025/04/14/how-can-you-fall-from-a-raked-stage-into-a-pit-onto-a-battery-of-drums-silently/
I won’t bore you with why I am pleased but suffice to say it explores some new territory in terms of subject matter, style, voice, character and form. That sounds pretentious but sometimes expressing the truth comes across as pretentious and maybe I am bored with having to always adopt an anti-intellectual tone in an effort to retain my imagined street cred. All the characters I choose to embody in this blog are phonies just some are more phoney than others. Having been a university lecturer I have picked up some of the mannerisms associated with the breed and they include lapses into pretentiousness, but I don’t think I will bother apologising for them any more.

Anyway the other big news and humiliation is a crown and sticky bridge right on the top front row of my teeth has fallen out again. I got it fixed a week or so ago but clearly it didn’t hold and now the dentist has gone on his hols so I have the grin of an overacting pirate or ‘man disfigured in fist fight’ to live with for a fortnight. I can wear a mask, thank goodness and people will assume I am being COVID cautious, but I am not the sort of fella that can just ‘style it out.’ If only. I have had ‘drop outs in the past and have used special glue to do a temporary fix. It turns out that Eugenol (clove oil) which is one of its main ingredients is the only thing in the world I am allergic too. There was a female lecturer at Hull who displayed terrible teeth for at least five years, many missing all together or very discoloured and she seemed to be able to withstand the second glances which actually became third glances once she had them fixed because we had grown so used to the gaps and spikes that the immaculate ‘Ryland like.’ set stopped us in our tracks. Anyway, here I am auditioning for ‘‘old druggie claiming to have ‘slipped in the shower’’

I am still exceptionally unproductive, a state I don’t like. The only activity I keep up is learning German (why? why? why?) and to that end I now have the AI enhanced version of DuoLingo which I think is great but it is clearly language dependent because while the German course has some deep conversational capabilities the Italian one is stuck on whether you want coffee with your ice cream. I have been reading about DuoLingo and it seems that they rely on an amateur team of enthusiasts for a lot of the content. The language courses differ significantly which would account for the German version having some really cranky/funny bits of surreal content that the Italian version seems to miss out on. I would say the German course is significantly better than the Italian one and I think Maria would agree, its also a lot longer. Next time I get a conversation with Lilly that is deep I will save it and post it so you Italian scholars can make a comparison.

Sometimes you need to moan. It is one of those times.

It’s been a tough couple of weeks. Tough on body, tough on mind. Generally I pride myself on a reasonably positive disposition but, I am sure we have all experienced it, there is a certain kind of ill, the relentless, no sign of any endpoint, night and day, no change, niggling type that chips away slowly at your sense of well being till it packs up and leaves you feeling crap inside and outside.

Initially it was quite alarming when my new drugs had a very poor result and it looked like they weren’t doing to work at all, which left no further new drug treatments to try so a lot of uncertainty. The fact that the drugs seemed to be making me poorly losing weight and generally getting quite ill. No serious pain but a feeling of detachment and general sikliness which could be the cancer or the painkillers or both. Also my brain was very addled and I felt a bit panicky. Feeling ill but knowing you are getting better is very tolerable but feeling ill and not benefiting from the discomfort is altogether unacceptable

We decided to give them one more go and I have been waiting to see the results with some trepidation and yesterday I got more positive readings so a big sigh of relief.

I have gone onto some anti anxiety medication which will take a week or so to kick in but should help with the continuous disrupted nights which have been getting me down. I am certainly not depressed or in despair but I would like to have the odd night without the adrenaline rush that precedes going to the toilet, taking a pain killer or resigning myself to YouTube till I fall asleep with my iPad across my face. Sleeping pills might have the same effect but I find sleeping pills leave you drowsy all the following morning and that’s the last thing I need. I have had anti anxiety medication before and what i remember is it takes the edge off the blast of nighttime colliwobbles or it did for me without having any great effect on drowsiness. Tiredness means I haven’t found a lot of energy to pursue any projects which is frustrating and makes me a bit sad. I am not doing nothing, but Inspector Morse and German Easy readers are getting a damn good airing. It’s at this time that you feel you should be able to will yourself into a more positive frame of mind and I guess strong people can do this but I resigned myself long ago that I am not one of those people that others admire for their resilience and stoicism. I am a wimp but very happy admitting it. I find that feeling physically Ill all the time (even though it’s pretty mild) has deprived me of the sort of tenacity, strength and good humour that people admire in the cancer afflicted and for now I just want to sleep and go through the motions of being a functioning cheerful enough human being.

However

I am much revived by my wonderful family who have been able to visit and put up with the blob on the sofa that groans. I admit I live vicariously through them. Their activities, their lives fill me with so much pride and pleasure that they act like a power bank. They visit the old man in his bed, bring the old man cups of this and that and relieve Maria of the endless task of supplying the old man with his necessities. More than anything they judge perfectly the degree of stimulation the old man can cope with or desires. That said I admit that I really understand how Dad felt when he was ill in hospital and was always keen for is to visit and then seemed to want rid of us. For him it must have been really tricky because we were all stuck in the same room with nowhere for him to escape, wheras for me I can just retire to my room and everyone understands its nothing personal its just my inability to deal with lots of stimulation and a pressing need for 18 hours a day of semi sleep. I still feel bad at having to opt out of everything, but opt out I will continue to do and they get all it.

Now that we have better news on the drug I am determined to try with the consultant to get the dosages balanced and working. I am not expecting to be able to function as I was but I would like to be able to do a few hours of project work, walk more than 100 metres, take a poo without having to drink 6 sachets of laxido in an hour, not wake up 5 times a night to take a wee and not need a hot water bottle when the temperature is 20 degrees. I am pretty sure the painkiller dosage which is still high can be dropped and that could make a massive difference as it’s the reason for the constipation as well as the daytime drowsiness. My visit to the NAC in July may provide some alternative strategies worth trying. There are many positive steps available to me it just been the last couple of weeks when they appeared to have been washed away in a violent rain storm leaving just a muddy stream of despair and existential angst (now that what I call cancer blog writing). Not sure which I find worse the gloomy stuff which I assume is pretty rare but might actually be quite refreshing to read, or the ‘this is a battle I am going to win by running up five high hills in a day wearing a sweatshirt bearing a meaningless strap line, so send me some some money so I can do it.’ But I shouldn’t be cynical everybody should address this disease in whatever way works for them

As I related before there are some more positive things that emerge from the imposition of this unproductive regime. The most positive is a feeling that I can take the time and not feel guilty about exploring any topic that pops up in my tictok feed. I am particularly pleased to discover bits of music, composers and performers doing interesting things that I have never heard of, such as this https://youtu.be/5b3XkCi3jsQ?si=b_thVHRJVVmrCoxx and then annoy the family by insisting they take a listen.

So that’s it for now. I really hope my next post will be more about life in general and projects than illness but I am finding it helpful not to put myself under pressure and go wherever my body wants me to go at the pace it wants to go – which is very very slow indeed.

This post comes with a warning. If you would rather not read about constipation, laxatives, enemas, pooing, toilets and related concepts please move on to some other place. Unfortunately, these topics are unavoidable in any honest account of my disposition at present. I could talk about kittens and clouds just to shield my audience from the issues that really matter but the topic that matters to me just now is SHIT!

Before you read this somewhat gloomy assessment of a day in the life of me jump to the end to find the surprise. Maria and I are still trying to figure what just happened but maybe we never will. In which case it possible that in future our upstairs toilet will be known as the  Lourdes of Appleton Roebuck.  As far as I am concerned it should be.

I thought I would add to what must be a significant volume of literature dealing with what it’s like to deal with cancer in full flight – hopefully this will be followed by a contribution on cancer in remission but didn’t want to miss this chance to record the moment before it’s gone.

I suppose the most significant surprise is the degree to which the experts don’t know what’s going on or what to do about it. I don’t mind this at all except it does result in us following a lot of blind alleys. At each stage whether it is new cancer treatment or new pain treatment you expect something to happen. That expectation clouds any results that might occur. You may start to feel better because you are in less pain because of better pain treatment or the cancer may be being held at bay by the new treatment. There is no way of telling, no scans or blood tests will tell you. Of course your imagination is also clouding the results – new treatments produce an expectation of new outcomes that may or may not be really there. So it a bit like watching a board game where you don’t understand the board – things keep happening – pieces keep moving about but you don’t know who is winning.

This process manifests itself, in my case, as a state of uncertainty that resolves itself from time to time as a good day or a bad day. A good day equates to controllable pain and some slight mobility. A bad day is pain that interrupts the normal processes of the day such as getting out of a chair going to toilet etc such that you dread doing them and this exacerbates a negative cycle of neglect such that the dread horror of constipation comes crashing through the door of my rough peasant hut like some angry maiden hunter from one of the German Fairy Tales I am reading obsessively. Constipation, a trivial condition to most, is my trigger for extreme anxiety due to the fact that it hospitalised me about 9 years ago and the pain when conjoined with the myeloma was very very bad. I am so lucky that a call to the acute pain nurses and 6 doses of a laxative within one and a half hours fixed it. I could kiss her were it not inappropriate.

So each day and each night can be viewed as unremittingly varied by the contortions of my bodily functions or unrelentingly samey punctuated as they are by a lot of sleep, a lot of dozing, reading, writing, eating (although my appetite has declined) drinking – I am to drink an obscene amount water, translating, tinkering with phones, iPads and laptops and computer gear that can be operated from a lying position. I shower very infrequently and have had to stop bathing as it’s not possible for me to get out and dodgy getting in.

I am very fortunate in so far as I have no great urge to do anything else although I would like to be able to utilise my studio again. Each day I start hoping that today may be the day when a corner gets turned and proper obvious remission kicks in. And my understanding is that may still happen but what form it will take and when and whether it may occur remains an unknown. So now for example it’s 11:09 am. I am very comfy and happy in bed with a tabby writing this blog post. The pain is nil and my bowels are delightfully empty. I am a little bit out of it having taken my morning dose of pain killers but I don’t feels anaesthetised like I do sometimes. I can hear Maria getting on with a million care responsibilities listening to her Italian thrillers. If I were to try to get up the pain would strike various parts of my upper body strongly enough that I would not be able to avoid a squeak. I would need to adjust myself on the side of the bed several times, several more squeaks until I could sit still enough with my head resting on the zimmer in preparation to pull myself up onto my feet. I will sit for 30 seconds preparing. Pulling myself up is not as bad as the preceding steps and once I am up it’s almost ok. I take my stick which has been resting on my zimmer and walk to the end of the bed using the bed post as a secondary support. This pattern continues of stick and secondary support the 3 or 4 meters to the toilet door where I can turn on the light from outside then do my whatever from a sitting position with my head somewhat melodramatically buried in my hands to counter the pain which is actually quite modest. Washing my hands and sorting my attire is painful because it has to be done unsupported however the lure that this event is nearly at its conclusion is strong enough to lighten my load. I travel back to the bed retracing the route and method I used to get to the toilet. The final sit on the side up by the pillow will normally trigger a squeak of pain but it’s nearly over so who cares. I lift my legs into bed using my arms and hands pull the covers over and celebrate that I won’t need to do that again for another 2 hours. Unfortunately the two hour cycle persists day and night. This routine is more or less the same for whichever bed I have selected to spend time in. The downstairs bed is the best in the day because the room is north facing so I don’t have to fight with blinding sunlight to read my iPad but accessing the bed is hopeless because of the very narrow space between the walls and the bed pillow end. Also the route to the toilet is long and treacherous without any any supports on route and it’s so cold I emerge with my teeth chattering as if I have been struck with an instant fever. Arthur and Lisa’s room is another good choice but it south facing so more battling with daytime sunlight. It’s great to have a choice but moving from one to the other is the most frightful drag for Maria who had to move all my accessories, phones, chargers, leads, books, drugs, sticks, zimmers, dressing gowns etc etc. and this doesn’t take into account the move I make to the living room sometime in the afternoon or evening for dinner and TV.

Interruption 1

Ebi just rang me from the hospital so I was able to to update her on progress with constipation. I am so impressed with them. There are several of them in that team and they are all great. She will sort out more oxynorm for me because the increased dose has meant I am ploughing through it much faster than I had been. She laughed when I asked if I should continue with the mega dose of laxative the implication being only if I wanted to spend the next 24 hours on or waiting to be on the toilet. So back to the normal dose for the weekend at least.

Interruption 2

G rang to see how I was feeling. I feel bad telling him that I am still struggling but I don’t ever want to fib as then those occasions when thing are improving go for nothing.

Interruption 3

Off for an URGENT poo after finishing call to G

Interruption 4

A MIRACLE

Arthur rung while I was having my first completely normal and successful poo.

Something happened, utterly bizarre, possibly explicable but who knows. The pain that has been extreme for three days has gone. Not gone totally but back to normal levels. I can suddenly walk, stand and sit without squeaking. It is a miracle. The other possibility is that the oxynorm that I am now taking more frequently, has suddenly and I mean really suddenly kicked in. Neither seem particularly likely but for now at least I am going to enjoy the freedom to move about squeakless. I suppose given the last time this happened 10 years ago when I was hospitalised and the enema had a similar instant life changing pain killing result, maybe there is something going on in my bowel that hasn’t been detected that has a dramatic effect on the pain generated by the the myeloma. I may never know.

But I am happy!

I have been reluctant to share an update because nothing much has changed or is news- worthy. I am in a state of limbo – not sure what that means but I think its to do with dead unbaptised babies so not an entirely accurate description of my state but will have to do for now.

Positive things: I now take only 2 doses of two different pain killers per 24 hours. That means record keeping is dead easy. I have a slow-release opiate (oxycodone) which they have increased the dose of that lasts all day. The previous dose faded in the evening so by TV time I was pretty uncomfortable and annoyingly demanding for Maria – hot water bottles, cushions,  cat on lap, cat off  lap. I take one other dose that lasts all night. I think it’s the drug that has the most anesthetising effect because I do tend to drop off frequently during the day. I also take one dose of gabapentin per day and one at night. I am wondering if the gabapentin which is a nerve agent may eventually be dropped but trial and error is the order of the day and in any case I have to be weaned off it slowly.

That means I can get through the whole day pain free as long as I don’t walk or sit for any amount of time.

Negative things: I stay in my dressing gown and pyjamas most or all of the day. Probably not good for the morale but not sure if I care.

I can’t walk or sit for any amount of time. If I sit in my studio and get involved in a project later in the day or the next day I may struggle a bit with back pain.

My brain is not functioning very effectively. I get confused easily. I can do my German translation but I don’t remember the new vocabulary so it’s a pretty repetitive process but I still enjoy it. All this tallies with the effect of the oxycodone so I don’t fight it. I would rather have brain fog than be in pain so I just stop and do something else of take a nap.

Longer term – As far as improvements to the underlying condition I just don’t know. I have a meeting with my consultant in a few weeks but I am not expecting any great revelations. If this is as good as it gets I can live with this for a long as I get given and I will just regard as a sedentary opportunity and new chapter in my life. I don’t need to keep repeating this but Maria is totally on board with whatever comes to pass which gives me enormous comfort and almost normalises the whole thing.

One very positive thing is that because I spend so much time on sedentary pursuits which can easily be paused we have lots of time for chatting. I really look forward to our chats because it reminds just what amazingly good friends we are. By no means do we agree with each other about everything but we can talk about literally anything and then stop and do our duolingo or discuss dinner or TV feeling refreshed and positive about whatever it was we talked about, she energises me and makes me feel good. Aren’t I lucky.

Tecchy stuff best avoided. I am yet to be convinced that anybody read these so why do I write them. I think it might be showing off

My other drug apart form the actual drugs and translating german is, and this happened before, when I last had a course of steroids, buying stuff online. It was lighters and phones that time and it was much more obsessive with quite big sums spent. Other than the German books I have been buying old gadgets to optimise my studio set-up hoping that a day will come when I can use it again. I really enjoy doing this although it is the one thing that can so obsess me that I break my own sitting standing walking rules and pay the price the following day. It I so immensely satisfying to know that your set up will work what ever strangenesses you throw at it. My set up uses up to 5 computers recently reduced from 6 and runs 8 operating systems windows xp, windows 7 windows 10, windows 11, ubuntu 20, MAC OS 10,  and 15 as well as windows 7 on bootcamp – ‘what?’ you may say more OS’s than computers – Yes and only 5 screens. I have three switches to route different computers to different screens. This all stems from my reluctance to ever bin stuff that works because it has been superseded by a new version that may not. When I was working toward my PhD I amazed my supervisor by programming a whole series of apps to manage pauses in synthetic speech. He didn’t expect the arty farty bloke to be able to programme – to be honest not did the arty farty bloke but I put in the hours read the text books – copied code for hither and thither and managed it. The apps grew in complexity and while a professional programmer would call them amateurish at best, they worked sufficient well to demonstrate proof of concept, that was all that was needed so I am very proud of them. Here is my final and most elaborate app.

I think it took me about a year to make. Its long so skip to get to some of the more outlandish features which don’t really work in terms of delivering more liveness but are quite amusing to hear

There is one secret project that I can execute from the prone position which I am really enjoying doing now. I wont be sharing this until its nearer to completion but I am applying the principle applied by Dr. Ellen Langer and its working – it has changed my creative process although I had already been applying intuitively, this video gave my personal discovery legitimacy.

I don’t have anything else to say.

Today the pain is worse and I feel a bit poorly. I think I messed up my medication overnight. I remember thinking at 6:00 am that if I take my 12 hr medication now then that will mean it will fizzle out at around 4:00 pm at which point the question is did I then take anything. I am suspicious that I didn’t and the app doesn’t help because I filled it in retrospectively. If that’s the case it would account for my current poorliness because it is the major pain killer in my arsenal. I can’t risk chancing a dose cos that could be quite a serious overdose. I MUST obey my app to the letter – however much I want to nap or delay a dose, when it dings I must blooming well do what it says. Anything extra taken enter it into the app as I take it, not later.

A different topic.

Something that we all know for certain is that when you recommend a film, a book, an exhibition to someone the likelihood is that they won’t follow it up. It will sit in their inbox or on their shelves making them feel guilty and eventually be forgotten by suggester and suggestee. I have done this many times in the past, less so now given I have so much time to explore the random stuff you have been sending me. So I have been pondering whether to circulate a video that I want you to watch. The reason that I feel ready to take the risk is that I am so amazed to find a video that so perfectly encapsulates my world view I just had to share it. It expresses everything I have tried to articulate in conversations with some of you and in some of the work that I have made you watch. That really doesn’t sound inviting does it but I can’t dress it up as anything other than “if you want to understand how I have been seeing the world since my abandonment of the Church of England or any notion of god while at primary school then this video says it all.” Bizarrely it seems to chart my philosophical evolution in the exact same order that it occurred for me. The philosophers tomes I read or pretended to read are still knocking about here at home. I won’t claim they are well thumbed but they have never been relegated to the car boot sale or to the charity shops and were they to be date stamped they would follow the sequence in which they are discussed in this film.

So here it is. If you really can cope with all 11 minutes then watch the last minute or so.

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In a moment of desperation and a lack of inspiration I sent my dear friend Paul my daily routine. It occurs to me that this account is of such import that the rest of the universe surely deserves a copy. So here it is. Blame Paul

My day goes like this –  stay in bed till late, reading or catching up with messages, or obsessing about something and of course indulging in my first bout of drug taking. Breakfast in bed brought by Maria, accompanied by a cat who tries to steal it assuming it is porridge with cream.  I get up, and get somewhat dressed maybe, and do something that I fancy. (Morning is the calmest time for back pain and I have the best mobility although I do feel very stoned because of the number and combination of pain killers consumed am). The last month or so i have been fixing things so that everything works properly in the studio, learning how to fix things, fixing things that don’t need fixing, organising materials for new projects, learning German and just occasionally helping sort something on Maria’s computer or trying to be useful in some way. I could do more jobs, such as load the dishwasher, and this does sound like a pathetic excuse but any stretching or bending while tolerable at the time pays a pain dividend later and that means more painkillers and yet more sloth later in the day or next day.

At some point we might go to the hospital, the supermarket or the doctor or Maria may escape to do some chainsawing, pop next door to Jenny and Geoff or do her one day per week at school. I will spend the afternoon fending off the desire to nap, eating a lot, or doing more of the stuff I was doing in the morning but by now my battle with the back is not going so well so sitting in an office chair is not fun. Maria meanwhile has been cooking cleaning, listening to Italian radio plays dealing with a million household tasks, drains, cats, cat litters, practising her piano accompaniments, reports etc. Then more drug taking for me in the afternoon. At 6:00 (quite often precisely, Maria does some intensive Duo Lingo to get her double points. She doesn’t know why but she has to. Should I be worried?

Evening starts around 7. 30. TV goes on, dinner on laps after which I really struggle to stay awake however absorbing the TV is until bed with hot water bottle on back and lots more drugs that anaesthetise me almost instantly for about three hours followed by any number of sleeping waking tolieting reading watching drug taking interruptions till about 8:00am (all of these have to get recorded in my health medication app to prevent me overdosing the next day). More or less every morning Maria gets up and makes tea and coffee and the day starts again. This morning I did it but came back moaning and groaning because I had mistakenly attempted it pre pain killers. There really are so many drug routines to keep on top of I don’t know how people pre apps managed it. They must have had much better brains than mine.

I have almost resigned myself to the current logjam of apathy and illness which is somewhat preventing me from getting on with my projects. If I think of what I can achieve from reading and fixing as learning, rather than doing, then I feel like I am achieving something. Also the pace of everything I do is glacial so it’s best I resign myself to that. I am enjoying the freedom to be diverted to topics off piste. Trying to read ‘Emil und die Detectives’ in German (not recommended for beginners as it’s full of 1930’s working class Berlin dialect) led me to an interest in Berlin between the wars and Weimar Republic art. A period of incredible artistic innovation and freedom with financial support from the German government. All very surprising given what was to come. Figuring out my camera from the massive manual has led to a whole series of film theory videos. Fixing my Steven Hawking synth has taught me about capacitors and replacing them, Figuring out my midi set up has reminded how much I love connecting up things in complicated ways. Trying to fix my mixer has taught me that shielded cables in some circumstances pick up hum much more badly than unshielded which is the exact opposite of what all the books and tutorials tell you. Finally when rodding your sewer drain take care not to let your rods come unscrewed so you need another set of rods and a rescue hook to get your original rods back out. And on that note I will stop