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.