A too busy day.

A little while ago, Matthew began a series of rhyming stories centred round our grandchildren, Arwen and Nye. Now he has illustrated them and published it. It's brilliant, and available on Amazon for a modest fee. Congratulations Matthew on such a good job.

For us, a busy day indeed yesterday. First came a pair of physiotherapists, supposedly to help my poor breathing. The main thrust of their arguments was that the expiration is the important bit - to clear the lungs before the inward gasp. They emphasised this repeatedly, with the analogy of a rectangle - the long side is breath out, short breath in, repeat. Then they kept competing to throw up examples of rectangles to help me remember this geometric reference. Annie and I did not dare look at each other or we would have laughed - especially when one concluded, "you can even use your hand - it has the rough shape of a rectangle, and you always have your hands with you!" But they did also offer the loan of a stroller - a wheeled frame with a seat, so I always have somewhere to sit when dyspnoea strikes.

I had never considered the value of just sitting. Without muscle, I am now sitting on my pelvis and developing early pressure sores. I have tried various cushions etcetera, but the physios stated the hospice no longer use ring cushions - they tend to exacerbate any problems. They suggested the best treatment was just to stand up and walk around every half hour - this restores the circulation. We called in at the hospice to pick up the stroller before going on to Glasswells (our local furniture store) for lunch and to look at chairs. We have found a comfortable electric recliner, which will come on Friday, and may ease the sitting problem.

We had to race back as the chiropodist was due to arrive. Waiting for her, I had a cup of tea but fell asleep in my chair, cup in hand, only leaping up when I became drenched, with tea covering my jersey, my trousers, the floor and the chair. Oops. At that stage, Edwin phoned to say he was in Ipswich and had bought a new car. Annie at this stage was trying to mop the floor with one hand while having a video call in the other as I was mopping my trousers with tissues. He had received a message from VW that the car he had originally ordered was delayed yet again, so he shrugged and found one he can buy in the showroom. He was so excited he couldn't wait to show it in the show room; it comes on Friday and he wants to drive round to show it to us, the same day they will collect the bed and deliver the new chair.

Then the chiropodist arrived. She has a very timid knock, the dog didn't bark, and she had to phone me to say she was at the door, so I had to sit in cold and wet discomfort while she tackled my feet. Only then could I get a shower and into jimjams and feel warm again, but at least we had a relaxing evening.

Getting Away

My Little Einstein

 We spent two nights away for the first time since Mike's funeral in February. Not, as you might suppose, a luxuary break in a hotel with spar and fine dining, but in an Ibis hotel in Coventry; yet still, it was a good break and has given encouragement that we might manage more than sitting at home each night.

The visit came about because Edwin had to attend a "Lab Inovations" exhibition at the NEC on behalf of the Royal Society of Chemistry, where he bravely manned their stand and gave a talk to a large group of chemists on "Career development in the AI era". Naturally, he collected a number of freebies from the stands, and gave me a little Einstein, who stands proudly on my desk.

Having hailed from Coventry, I still have one brother there whom we met, with his daughter and new grandson. My other brother died two years ago, but we called on my sister-in-law who made a fine lunch.

It was arranged that I would then drive to pick Edwin up at the NEC. He had been due out at 4pm, but suddenly found he was booked to help dismantle the stand too, so he didn't call me till late. By then the roads round the NEC were totally jammed with roadworks, diversions, and people leaving, and it was dark, which form me means difficulty seeing lane changes, or indeed any directions. Within the NEC grounds, even the satnav seemed to falter, leading me up to several barriers, but no where near the designated pickup point. Sensing my panic, Edwin said to just stop and he would walk to me. Even then, he had to climb two fences, navigate through a Hilton Hotel, and scramble through a hedge to reach me. I gladly handed over the wheel and could relax again, as we picked up Annie and Edwin drove us back. Age probably raced past me a while ago, but because I don't do complex journeys now it had crept up unheeded. Even navigating parked cars in a little town like Clare can be stressful; I must become firmer in my resolve about what I can achieve when locked behind a steering wheel with no escape.

The Bed of Dread

 

The hospice nurse ordered a bed for me last week, which arrived this morning. Once I saw it assembled in our lovingly designed, artful and peaceful bedroom, I must describe my emotions 

I enjoyed so much of my life as a medical student: the intense studying of the human frame, interacting with patients on the wards, even the surgery was fascinating, though I knew early on that I was not surgeon material – I was slow and uncertain and preferred to consider options rather than make rapid irreversible decisions. 

The nearest way I can describe that life in the mid-1960’s is as very close to Richard Gordon's A Doctor in the House, but more bizarre.  St Thomas’ Hospital was founded in about 1100 a.d. becoming a pilgrims’ hospital after the death of St Thomas a Becket in 1170. Therefore in 1970 it was decided that the students would put on a pageant to honour 800 years of its history. This was staged over the road in the grounds of Lambeth Palace in the presence of the Archbishop, and for the medieval pilgrimage some of the students brought their horses into London, parking their horse boxes on the palace lawns. The pageant enacted the traditional Chaucerian costumes, including original knight’s armour, and finishing with the founding of the nursing school by Florence Nightingale (St Thomas’ nurses are still called Nightingales).

Inevitably, many patients we were exposed to had esoteric diseases that we might not see again in a lifetime, so for my general medicine I opted to do a stint at Lambeth Hospital, a former workhouse but now a sister hospital. This included a short period on the geriatric ward – but this completely put me off that speciality. My nature is not blessed with an overabundance of compassion, and to see the ward filled with the incontinent, the dementias, the terminal bronchitics, and the generally insane was disheartening. The worst dementia patients were restrained by what I can only describe as “cages”: high-sided beds with a mesh over the top, to stop them climbing out and falling. Those beds were what I thought of when I saw this bed. It is hard, rigid, grey-painted iron with high walled ends and a thin plastic-covered mattress, and my mind flashed back to those poor unfortunates dying in the old workhouse at Lambeth.

My future now is short and inevitable, but I still anticipate living each day in the company of my wonderful Annie; gathering joy from the country air; meeting up with relatives and friends, getting out with the dog to walk by the river, or spending time on my cosmology hobby. All of this will be extended by my new scooter. 

But this bed brings an air of gloom into the house. It signifies one day less on the march to death; instead of anticipating each day, I feel it brooding and promising only day-by-day decay. I would rather die in beauty but discomfort, than in that ugly monstrosity, practical though it may be. That bed will have to go.

On the merits of Oramorph

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 Oramorph, 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.