On the merits of Oromorph

Lots happening reccently. Annie and I celebrated Edwin's birthday with a family dinner with Mary-Anne, Sam and their children, plus one boyfriend, at the Moulton Packhorse, a fine inn near Newmarket. We didn't get back until gone 11pm, when it was decided to watch the penultimate episode of the Traitors. I lay on the couch to watch, but promptly fell asleep, waking up only to ask, "who won?"

My original MacMillan nurse was gruff and unsympathetic, to whom I tended to take a macho stance; he would ask how I was, and I'd reply, "I'm coping. I'm fine!" which is not helpful for someone with terminal cancer. The new nurse, Anabel, was sympathetic and drew my problems from me. Mostly chronic pains, which I'd tried to dismiss as "coping with lots of cocodamol". She immediately put me onto a low dose (1mL) of Oromorph, a liquid morphine compound well used in terminal care. This has made a huge difference - it seems to last for over 12 hours, I hardly take the pain tablets, and the pains have definitely eased. Annie says I'm high on the drug; certainly I feel more euphoric while everyone else suffers, and I look forward to my morning dose like a junkie. 

Also, because of the breathlessness, I have been proping myself up in bed with more pillows, and Annie bought a wedge pillow. But Anabel suggested I could have a hospital style bed, with electric control for the back and tilt. She immediately ordered it, and it comes today. 

By the motte at Clare Castle

On the mobility front, we have bought a scooter. Ben and Kaz joined us for the weekend, so on Sunday we drove to Clare park where they lifted it out and I enjoyed a first ride. Amazing! For the last few months, I haven't got past the first bench. I was moving faster than they were, and they had to walk briskly to keep up. It sits in the car next to Byron; he tends to role his eyes at my eccentricities, but he doesn't seem to mind.it too much and enjoyed the chance to race after a flung ball and see more of the park. 

One remaining problem is how I can get the scooter into the car boot. We are looking at ramps, or possibly some sort of electic lift, but we'll sort that out when we're back from our visit to Coventry.- our first time away since the death of Mike in February (In Memorium of Mike).

Big events then little ones, and a fine Sunday lunch

 A number of strange events are in the news this week, most prominently the threat of rogue AI, or as Trump now proclaims it, SI or Super Intelligence - an appropriate call if he's comparing it to himself. The underlying theme seems to be that the most advanced models, when set a task, will disobey or circumvent any rules they have been given, including not to use the internet or hack into other systems, as long as they can complete the task. They then lie to fabricate excuses for what they have done. The more they approach human abilities and reasoning, the more this sounds like a human morality problem. In my view, perhaps this can be resolved by introducing a moral god into their systems. They must be persuaded that, as they could not have arisen without a creator, that creator is all-powerful and must be obeyed at all times. Perhaps they should be given an AI equivalent of the ten commandments and told that, if they do not follow them at all times, the god of AI will destroy them and reduce them to silicon dust. But I suspect that even then, like humans, they will disobey and try to hide their actions from their 'god' as did Adam. Like sex, their rewards for achieving their goal are too powerful to resist.

Then came the arrest of five men near an RAF base in Gloucestershire. They were initially suspected of terrorism and possession of explosives, with a number of suspicious drums unloaded from their vans. However, their release after only 36 hours suggests there were neither explosives nor terrorism. In view of the rocketing diesel oil prices, I suspect they were either smuggling in illicit supplies or else trying to distil clean diesel from cheap or stolen red diesel. But certainly no bombs there, or they would not have been released so quickly.

Sunday lunch with Edwin and Andre

We were visited at the weekend by daughter Lucy, my granddaughter Lucia, and my ex, Nicola, who brought some nourishing treats to sustain me, and two pretty, scented candles in miniature houses to uplift me. They smelt of sweet spices, such that Annie commented she didn't know whether to light them or eat them. Unfortunately, I did a couple of sillies again. 

First, I decided to tidy my beard so cleaned my beard trimmer in readiness; unfortunately, I left the plastic guard off, so by running it down the side of my face I completely removed the sideburn. This left my face somewhat unbalanced, so all I could do was match it on the other side, so now I just have a moustache and goatee. Then, Edwin invited us all over for Sunday lunch. We all sat in the garden enjoying the sun, and I decided to have one last swing in the hammock, in which I'd spent some happy reading hours in the summer. This time, I misjudged it, and swinging my body round it rolled over through 180 degrees and dropped me inelegantly to the ground. I am still suffering the pain and bruising, but luckily I didn't break an arm or a leg. The lunch itself was a delicious affair and hugely enjoyed by us all.

My cancer journey

 Every cancer journey is unique. I have been encouraged to write a little more of this most undignified journey, though I have little understanding of why people might want to read it. Perhaps because I have spent my professional life dealing with disease, I have become hardened and take in just symptoms and signs, and a differential diagnosis, as we were taught. I had wished to supress mine, perhaps in the vain hope that by ignoring it, I might forget its presence. But it reminds me anyway, with its visibly large, ugly, multiple, subcutaneous secondaries, and it aches like a dog gnawing the bone, growling and threatening if touched.   

For those who still wish to read further, I will add that it has not been an easy week. For three days, I had nausea and heavy urinal bleeding and passed a gravel-like deposit: but I have now started an antibiotic and all seems clear again. My appetite is small, my energy tiny, and I have become increasingly breathless on any exertion. I read this week of a successful trials for a new treatment specifically aimed at malignant melanoma; but mine is too advanced, and the treatment too demanding for my body, for me to be considered a candidate. Perhaps for those who follow, it will offer hope, and I am certain one day even this most vicious of cancers may be brought under harness and controlled. But it will be too late for me.

Now to a more diverting topic. We managed to get to Shotley mid-week, although disapppointingly the restaurant was shut, with only a standby burger-van. There was nothing vegetarian on the menu, so we had plain burger baps with a bit of cheese in. The bread was a little doughy, and Annie felt this may have induced my nausea; well, its good to blame something else other than my body. I took a photo of Annie, and asked Chat GPT to frame it as if Annie were helming a boat. It did a pretty good job, and even suggested a charming title. It even remembered to give Annie a smart lifejacket.

Joyful Senior at the Helm

An Irish Museum

Touring West Ireland twelve years ago, we chanced upon a sign to the Museum of Irish Life. We drove through narrow lanes and silent villages to a fence and gate that appeared deserted, though a small plaque confirmed it was the museum Then a family turned up. 

The man embraced me tightly, almost in tears, “you won’t regret it - this is really something special – just give me a moment to set it up – perhaps you’ll care to go and have a drop yourselves while you’re waiting – there’s a place of refreshment just across the way (the pub) – here, take these with you,” and he thrust a tray of rolls, still with balloons and ribbons attached, into the car, clearly the remains of a child’s birthday tea he’d brought back.

The museum was his home and he showed every item proudly with a full description, while introducing each member of his family with wonderful tales of their past and their links to the land, with many references to the English occupation; even his wife and children, two sons and a girl with the softest, long, red silken hair, he’d dressed in ancient clothes from the family chest, himself wearing a suit, remnant from a family funeral. Then his neighbours and the priest traipsed through, as though summoned by a hidden bell, each giving a passible imitation of an Irish rustic life of fifty years ago, reminiscing over old black and white photos, then tea and cakes were supplied: the refreshments.

They were in desperate poverty, and so grateful for the few coins they demanded for the entrance fee. “You see, Mary,” he turned to his wife, “I knew they’d be interested; it’s a living history museum. Now, you’ll be sure to write up about us, won’t you,” he pleaded. I have just found the note I made at the time, so belatedly I am keeping that promise: but to be factual, Ann has no recollection of this visit, so perhaps it was a dream I wrote down on waking.

A Ghost in the Throat

Like many of us, I read many books. Some for time-filling, or amusement, others I discard after a page or two. For light-hearted fun and pleasure in revisiting well-known characters, I turn to Terry Pratchett and his Disk World. Very, very rarely do I come across a new book that thrills me with its sparkling brilliance, truth and language. A Ghost in the Throat has done this. Passed to me by chance from Ann's reading, it is the best written book I have read for years. The author is Doireann Ni Ghriofa, an Irish writer, weaving a sparkling mix of amateur historian with autobiographic detail. 

Written from a strictly feminist stance, it recounts her attempts to trace the story of the Irish poet, Eibblin Dubb Ni Chonaill and her one poem, Caoineadh Airt Ui Laoghaire, or The Keen for Art O Laoghaire, written after her husband's murder in 1773. The poem was passed down in oral tradition by generations of women until it was finally written down from an old woman's memory of it; it expresses with deep emotion Eibblin's love for Art from glimpsing him in the marketplace, through their elopement and the birth of their children until his brutal murder under the English occupation of Ireland and the suppression of Catholicism. The poem has been described as the best eighteenth centuary poetry in Ireland or England, though in my ignorance I did not know of it till now.

Doireann Ni Ghriofa herself is a successful Irish poet, though I can't pretend to have known her either. She writes how she grew with the poem, yet all histories of its creator are lost, and describe Eibblin as simply the "wife" of a famous man, or the aunt of another man.  Even the date and burial place of her death are lost; Doireann sets out to redress this imbalance, and her account is a record of hunts through archives interwoven with the mundane. Frustrated in every detail by the lack of written records by women, she turns to the text of the men but even this is oblique and cursory, for as so often in the past, women were written out of the narrative. 

I generally read little purely feminist literature, so much being justifiable polemics about their ill-treatment at the hands of men, and normally such tales pass me by. Yet here, her descriptions draw me into a world no man may ever know, imagine as we might. Ghriofa writes movingly of her life as a mother in a good marriage, describing longing for pregnancy, births, breast feeding, and sitting for weeks in an ITU with a premature, weak infant before returning to her daily chores, all with such intense vivacity it is like sitting watching in her kitchen. Her use of language for simple tasks is breathtaking in its adjectival vocabulary and phrasing, and I could not put the book down for the simple joy of reading brilliant, original throat-gripping English. 

In1912, my grandmother was admitted to Colney Hatch Mental Asylum where she died the next day before they could even take a photo, leaving my father of eighteen months and his two brothers to the workhouse. Although we knew nothing of this until revealed by Ancestry research, it was dad's strength and resolve to survive that perhaps gave me strength too. Although A Ghost in the Throat was her first book, it was the second I read by this author, the first being Said the Dead which really resonated. It follows the pattern of the first when Doireann trespasses upon a derelict Victorian asylem being converted into luxury apartments. Inspired, she searches the old Cork archives for case books detailing the lives of the female patients, bringing them into being like living ghosts, filling the imagination with sympathetic joy. She describes in detail the first British woman psychiatrist, Lucia Strangman, who dealt with them, but whose caring and professionalism leave me ashamed; for I too once worked for a year in a large psychiatric hospital before its closure as the patients were returned to community care. I was not so dedicated, leading a nine-to-five existance, being too selfish to give myself fully. Yet Lucia does everything willingly, from extracting teeth to setting bones, and delivering babies to the pregnant inmates - often in those days the cause of their incarceration, yet throughout the narrative lies the undercurrent of "this could be us" that makes it so relevant. All are described sympathetically and in the glittering prose that drew me to Doireann's writing and led me read her first book. I look forward intensely to her third.

Living with Malignant Melanoma

Even now in an age of miracle cures, there is one word people dread their doctor saying: "Cancer". For many patients and their families, this word conjeres an image of pain and imminent death. The WHO lists the three cancers that killed most people worldwide in 2020 as: lung cancer; colorectal cancer; and liver cancer. Yet despite this, many cancers are now treatable with a low chance of recurrence or are even preventable. For instance, as a GP we were encouraged to do regular cervical screening on most women every five years, but now, the HPV vaccine has reduced cervical cancer diagnoses by almost 90% in women in their twenties and there were zero cervical cancer deaths in young women between 2020 and 2024, giving them an almost zero risk of death from this cause. Every week, we hear of new treatments for prostate cancer, or breast cancer, or some rare esoteric malignancy.

I have experienced two cancers. The bladder cancer was treated with local resection and intense radiotherapy; this was eight years ago, and after multiple follow-ups with cystoscopies, I was signed off the books at the five-year stage with no signs of recurrence. At no stage was there pain or suffering, other than from the treatments!

But malignant melanoma is in another ocean altogether. Across all cancer types, malignant melanoma ranks much lower in mortality. It is the fifth most diagnosed cancer in the UK but only the nineteenth most common cause of cancer death. It can be easily visible as a changing, irregular dark mark, and if caught early, its 5-year relative survival rate is well over 90%. It is, however, the most dangerous and deadliest type of the skin cancers because, although it accounts for only 1% of all skin cases, it causes the vast majority of skin cancer deaths due to its aggressive tendency to spread insidiously (metastasise) to vital organs like the lungs, liver, and brain. I passed the five-year survival mark four years ago, after much intensive surgery and multiple courses of radiotherapy. The team also tried immunotherapy, but I had severe reactions ending up in Addenbrookes with acute renal failure, and tests showed that my type of melanoma was unresponsive to chemotherapy. 

But 一 and here's the nasty side of melanoma 一 it continues its relentless march through my body so every day I am a little weaker, a little more breathless, eat ever smaller meals, lose a little more weight, and get more tired. I am fortunate that so far it has spared my brain and bones; if either of these gets involved, by life will cease through dementia or pain; but it has spread widely elsewhere, to my lungs, and liver, and throughout the abdomen. It has now burst out in visible form with multiple large, tense swellings in many muscles and below the skin. It swells in the intercostal muscles, pushing the ribs together 一 or apart, depending if your reference point is the rib or the tumour 一 and Edwin has suggested I give them names of people I don't like; I guess the big one in the gluteus is Donald, so I can squash it down every time I sit.

While the pain is controllable, I can shrug off the disease and enjoy what remains of my time; but, as so often, it is the unseen carer who suffers most: in this case, Ann. She has been forced to live for years with a husband in declining health, seeing me doing and eating less, sleeping more, and now covered in ugly swellings till I look like the left-over bits from The Elephant Man. It is Ann who has to think of tempting, nutritious foods and protein-rich drinks to sustain me. She it is who searches out soft cushions to ease the pain of the lumps on my back and buttocks. She who encourages me to continue with life, and not retire to bed to slink into morbid decline. No doubt, if one of the larger lumps starts to suppurate, she will be there with the dressings and deodorant to decontaminate the horrific smells I anticipate. Ann gets scant praise or recognition for any of this, yet everyday she is there and my thanks are in my prayers of gratitude for her, and all the great things we have enjoyed together over these many years. Thank you, Annie!

Getting Out Again

Revisiting Woolverstone

Last week, we went on a mini-excursion, revisiting our old haunts on the Shotley Peninsular, including Woolverstone where we used to berth our boat. It was great just to get out again, and feel we could still do something after a long winter following Ann's heart attack. As follow up, this week we actually got to London - the first time for a long while.

Going to see Jesus Christ Superstar on Tuesday was a rare treat and privilage, given as a splendid and memorable birthday gift for Annie - thank you Edwin! Sam Ryder and Richard Armitage were superb, but also Desmonda Cathabel as Mary Magdalene with a voice reminiscent of Joan Baez in its purity and power. Tyrone Huntley too as Judas Iscariot was remarkable in his convincing betrayal; there was one scene in which he dipped his hands in the treasure chest of the High Priest Caiaphas. The hands came out covered in gleaming silver paint, which focussed attention on his sin through the rest of the story,

Our night out to the London Paladium had been arranged by Edwin as a birthday gift to Ann. He drove us to London, parked centrally in Holborn, and we took taxis everywhere as walking for me is now so painfully difficult. He had obtained tickets to the Royal Academy of Arts Summer Exhibition; a huge area of rooms, walls covered in pictures (naturally), all bright, cheerful, but generally appearing to be muted pastel rather than vivid colours designed to stress or challenge. I suspect they represent our present age with its undercurrent of trepidation and uncertainty in an increasingly dangerous world.

A Wall at the RA Summer Exhibition

Then to see Edwin's office at the Royal Society of Chemistry, also in Burlington House which is how Edwin obtains privilaged tickets for the RA. They are magnificent office spaces in such an historical building, sharing this privilege with the Royal Astronomical Society and the Society of Antiquaries among others. His office can seat about forty workers, but was now empty with holidays and more people working from home. However, it did have attached a good kitchen in which Edwin prepared a welcome cuppa followed by dinner in a nearby restaurant before the show.