The ethics of diagnosis

Mild air and cloudy sky, but not overcast this morning. I went to bed too late last night, pursuing a line of thought to conclusion in writing a reflection. I woke up feeling clear and sharp from an average night's sleep, but was light headed after breakfast, and before taking all my meds. Serves me right for lacking discipline about stopping work and relaxing late in the evening when it's nearly bed time. I felt lethargic and didn't do much all morning apart from writing Sara a long email, and reading the first fifty pages of the book, evaluating the impact modern medical diagnosis, which Ann sent me.

Clare has developed a cold and didn't go to here study group in Penarth this morning. After cooking fish pie for lunch, she went to bed and slept for a couple of hours. I walked in Llandaff and Pontcanna Fields in the afternoon. One of the chestnut trees which doesn't bear conkers in the autumn is in full bloom with red flowers, a striking difference to all the others with their white 'candle' blossoms. The horse paddock behind the stables that stretches all the way down to the river bank is covered in a carpet of buttercups and daisies at the moment, a spectacular sight in the sunshine.

Much to my surprise, this evening's episode of 'The Archers' was about DNA testing that can reveal if a person carrying it is likely to develop cancer. This was what I was reading about this morning, with reference to diagnosing Huntington's Disease, and the ethical question of whether or not to inform family members about the findings, whether or not it's necessary to know, and what impact knowing will have of quality of life. Such a coincidence! Is this Art imitating Life? As Ann said when I told her. We chatted with Owain on WhatsApp after supper. He's got a gig in Cardiff next weekend. Such a pity we'll be in Tenby and won't be able to enjoy his company.

My memory and concentration has been particularly sluggish today. It's most frustrating. I've not been able to do much. I think, I hope it's just accumulated brain fatigue.

Inconvenience store

 I woke up to an overcast sky, quite clear headed for a change, but my brain seemed to become overcast as a result of the medication, leaving me with erratic concentration. I spent the morning combining the five Adventures of Reggie Rabbit stories into a fifty page text. The task was frustratingly difficult. It was if my memory was only working intermittently. 

Clare went shopping for veggies after breakfast, only to find the greengrocers' shops were shut. Neither of us remembered it was Spring Bank Holiday. I cooked curried lentils for lunch, with broccoli, baby corn cobs and carrots. An interesting combination, not too starchy.

After we'd eaten I went to the Pontcanna Street Co-op to stock up on a few essentials. It's not an easy shop to navigate, as the aisles are narrow and signage is poor. It was busy, as it was one of the few food stores open on a Bank Holiday. It was crowded, making navigation difficult to different shelves, not all of them well lit. I couldn't stand back far enough with my impaired vision to survey shelves crammed with an arrangement of products not well displayed. As a result it takes longer to find everything on the shopping list, so the turnover of shoppers is that much slower. The only alternative is to walk the extra mile to a larger store, but that's not always convenient.

Later, I walked to Thompson's Park, where I was hailed by Andrew and Martin. I've not seen them since Andrew started his ordination training at St Padarn's.. He's on pastoral placement this year at St Theodore's Port Talbot, loving it and its parishioners. It's an example of a deep rooted urban industrial community that is more  like a village where everyone knows everyone else, and takes an interest in each other. It's an impoverished area with steel production shut down, pending the construction of new electric arc blast furnaces, leading to many redundancies ad interim. Nevertheless, it's a community rich in its relationships, gifted people and characters with a passion for making something good in time of adversity.

After a circuit of the park, noting the increase of noisy green parakeet activity, I walked over to Llandaff Fields and did a circuit there before returning home in time to get the table ready for supper. My head had just about cleared by then, I was surprised at how little traffic there was on the roads. The parks weren't busy either. Did this mean there was an exodus to the coast? Without the convenience of a car, getting to the seaside by public transport takes time and planning. Alas the limitations of age and infirmity!

Worries

It's warmer today, sunshine and clouds but no rain. I was awake for over an hour in the night, worrying  about how I'm going to cope on our fortnight's holiday in Tenby next week. My head is clearer, but the combined effect of the meds often blunts my senses and leaves me feeling less alert. I'm not sure how well I'll cope with the stimulus of a change of environment and routine. My memory works but sometimes it's slow and my concentration lapses if I'm distracted. Am I going to feel out of control in a place I remember well in general, but am unfamiliar with in detail? Am I going to be at risk of an accident? These thoughts go through my head when discomfort in my bladder and intestines wake me up at four in the morning.

We went to the Parish Eucharist at Saint Catherine's after breakfast. There were about forty of us present and half a dozen children. Next week is ordinand Jeremy's last week with us on placement. I promised him some books. As I forgot to take them with me today, I must take them with me to Mass on Wednesday for him to collect next week. We didn't stop for coffee and chat after the service but came straight home. I lost sight of Clare in the street outside. I waited for her outside the Co-op but couldn't see her anywhere, so I walked home on my own. I can imagine this happening when we're in Tenby after a concentration lapse on my part. 

After lunch I slept for an hour in my armchair, and then went for walk along the Taff in Pontcanna Fields. I got a photo of a female cormorant in breeding plumage, standing on a rock in the river stretching her neck upwards to the sun, and another of a pair of mallards swimming down river with a brood of six ducklings, almost fully fledged. This year I missed seeing the newly hatched yellow fluffy offspring altogether. I suppose that reflects a change in my habitual walking routes since I started recovering from the stroke. I don't walk as often along the river these days.

I made the Rogationtide Morning Prayer video slide show and uploaded it to YouTube before supper, and watched a new episode of 'Panda' after we'd eaten, while Clare watched 'Call the Midwife' on telly. There were a few other chores I should have done, but I didn't have the mental energy. That's what happens when worry adds to sleep deprivation. It adds to the unfinished business I need to tackle - a vicious cycle.

Talking of vicious cycles, Peace talks between America and Iran have led to a plan to end the war being proposed by Iran. Although under review, Trump says it's unacceptable. Industrial supply chains disrupted because of the closure of the Straight of Hormuz will have a far reaching economic effect. Uncertainty over the outcome is driving inflation, and it will take months for production cycles to return to normal if marine traffic does return to normal. This will make Trump and his coercive tactics even more unpopular. America's alliance with Israel continues, undermining and devaluing partnership with Arab allies. Trump is withdrawing US troops from Germany in response to EU criticism of his war. This weakens NATO's defensive posture toward Russia. I wonder how long it will take for Russia to take fresh advantage of this?

Feedback

A cloudy day, but slightly warmer than previous days. Awake for only an hour and a half out of nine in bed I slept well and my head was fairly clear as a result though my concentration and alertness was variable, making me feel as if I was unstable, even if I wasn't.

Pancakes for breakfast, lovingly cooked by Clare, who was awake well before I got up. For no apparent reason, while I was editing a reflection after breakfast, I dozed off in my armchair and slept for another hour. Yesterday I walked more than my daily step goal. Did it lead to added sleepiness? Clare had cooked lunch by the time I came around. I did the washing up, then walked in Llandaff Fields. It started drizzling after I'd walked for an hour, so I arrived home wet and annoyed that I had to cut short my exercise time. I had another exchange of emails with Roy today about the portrayal of the antichrist in the book of Revelations which he's studying at the moment.

Clare was out shopping when I got back. With the house to myself, I recorded Daily Prayer the week after next. I need to get ahead as we'll be away in Tenby for two weeks, with no guarantee of working internet to use. I edited the audio after supper.

Rachel called and we had a chat about her experimental YouTube song launch. I left comments about the Kintsugi song, and so did Clare. We both found it rather difficult to post comments from the phone app as the user interface isn't friendly. It's too crowded and full of distraction. Not good for anyone with mental fatigue. The laptop version is much easier to use.

By the time the audio edit was finished, it was time to bring this damp day to a conclusion and escape into sleep.

Diabolical

A return to overcast sky and occasional showers today. Despite getting to bed earlier I still lost three hours' sleep out of ten in bed, making it harder to get started. Eventually, I started preparing veg for lunch and realised we were out of carrots, so I went to the Jason's greengrocer's to buy some, and met Clare on her way home from shopping elsewhere. I cooked when I returned. For the first time in ages I hoovered the carpets. I was a bit nervous about using an unwieldy weighty machine, given changes in coordination and variability in muscle flexibility. Although I'm still strong enough, I need to be extra cautious to avoid the risk of over reaching myself and having an accident.

I had an email from Roy in Madrid asked me about John the Seer's letter to the church in Philadelphia in Revelations 6.8 and the idea of the anti-christ in the New Testament. This gave me something interesting to examine and explain, given the current US war with Iran and Trump's behaviour as a war leader.

When I was out walking in the park at tea time, I sat on a bench to listen to Rachel on YouTube, launching a new song, recorded when she was playing to a live audience - a beautiful song immaculately performed and produced called Kintsugi, named after the Japanese art of repairing broken pots using lacquer mixed with powdered gold to highlight rather than hide the damage, revealing the random beauty in the repaired cracks. The song reflects on ageing and how there's beauty in the life of a worn and broken person. Publicising the song launch as widely as possible and soliciting positive responses aims to influence the algorithm that recommends viewing to other YouTubers, boosting popularity and hopefully sales. I hope so. Rachel deserves artistic recognition. She's such an excellent musician and performer.

At supper time, we were nearly out of fresh fruit so I went to the Coop to re-stock the fruit bowl before settling down for the evening.

Lots to think about today. Following anti-semitic attacks on synagogues and in the Golders Green area, a surge of anger and fear is being expressed by Jewish community members. It's understandable given the long history of persecution and intolerance experienced by Jews in 'Christian' countries.

Legislation against hate speech doesn't prevent people from thinking racist thoughts or propagating their ideas and plans on encrypted social media. Sick angry people can easily be motivated to violent actions, alone or conspiring with others. No matter how effective police extremist and anti-terrorist surveillance may be, no matter how alert Jewish security intelligence gathering teams may be, there's an element of randomness about when and where violence may break out and who the perpetrators may be. Freedom, openness, a high degree of social responsibility and participation as British citizens, are vital expressions of Jewish faith and values. A defiant bright light in the long dark shadow cast by Nazi persecution and the Holocaust. It's not just up to the police and security agencies to protect Jews and Jewish community institutions, all citizens of good will must be ready to denounce and resist the toxic rhetoric of extremist racist violence tolerated under the disguise of free speech today. 

An interview with Archbishop Rowan appeared on the 'Unherd' news website in which he reflects on the 'diabolical' nature of contemporary political discourse, taking aim at Trump's contemptuous foul mouthed,  often inaccurate misleading language, aiming to sow chaos and divide people. The word diabolical from the Greek means forcing division. 

In an interview given 30 years ago, Comedian John Cleese speaks about why extremism feels good for all the wrong reasons and is so tempting: it hands you a list of enemies, and a feeling of righteousness to go with it. Suddenly every frustration has a target and every harsh word feels justified. But when we sort the world into heroes and villains we lose something important: the ability to grapple with complex issues. I wonder how far Trump and his associates really understand this? His coercive war strategy is driving the global economy into recession with fertilizer shortages ending up reducing food supplies which will hit poor countries hardest, including America's poor. The Middle East war will only move out of crippling deadlock by diplomatic dialogue and negotiation. Trump's coercive tactics have failed and dangerously so. 

I had a nice chat with Rachel just before bed time, discussing her music promotion campaign. It's too soon for the results to indicate success. It a matter of wait and see, and learn from the experience.

 

Shredding

A beautiful sunny spring day, with a milder breeze today. I had my usual broken night, losing three hours sleep out of ten in bed. I was clear headed when I got up. I blew my nose and a large blood clot came out in the mucus. Later in the morning I had a further brief nose bleed. It's rather upsetting, but inevitable with my blood pressure volatile influenced by stress, still high, clot thinning meds and wounds in my nostrils and nasal cavity which are not well healed. I spent a few hours recovering from the shock. 

Then I tackled a particular chore I've been avoiding for months. I have a thick pile of A4 paper documents containing information about the 289 funerals I've taken since we returned to Wales. Many are annotated with handwritten pastoral details. I retained them in my file cabinet in case I was asked to minister again following another death in the family. I needed to shred them into anonymity, as they're sensitive confidential documents. It took me an hour, and yielded a large green recycling bag. Yesterday's rubbish collection emptied wheelie bins, but fortunately the content of sorted recycling bags is yet to be collected.

Clare went shopping and I cooked veg, rice and fish for lunch. Then, I had a half hour phone conversation from a member of the NHS stroke team, following up on the survey I responded to last week, asking how I was getting on with medication issues and managing everyday tasks in the light of visual impairment and memory coherence. I spoke about losing confidence in dealing with digital details. Cognitive behavioural therapy was suggested. I spoke about my feeling of losing control, echoes of anxiety and panic that are a legacy of the botched attempt to deal with the first catastrophic nose bleed after the stroke. From my experience, I don't think this can be addressed by reason and will power alone. A minor nose bleed can reawaken the same emotions. It left me wondering if I might benefit from hypnotherapy. Then after a short siesta, I walked in Llandaff Fields. All the chestnut trees are magnificent now, in full leaf with their characteristic 'candle' blossoms, lit up by afternoon sunshine. I went out again after supper to enjoy the sky as the evening light changes the colour of small clouds, and completed my daily step quota. I'm tired this evening, so earlier to be for me.

Appointment annoyance

I woke up from a good night's sleep to a clear blue sky, sunshine and strong gusts of wind making trees in leaf move energetically. Thick light blue and purple lilac blossom appeared from a distance like a banner being waved. A delightful sight. I posted today's Morning Prayer YouTube link to WhatsApp after Thought for the Day, then got up for breakfast feeling rather light headed and slow thinking, even before I took my daily doses of medication. It seems so random.

There were nine of us at the St Catherine's Eucharist in honour of St Catherine of Sienna. Unusually, the high altar reredos hosts figures of Catherine of Alexandria Martyr and Catherine of Sienna Doctor of the Church. It paid homage at the time to Catherine Vaughan, wife of the Dean of Llandaff, a benefactor of the church who laid the foundation stone. After coffee and a chat I returned home. Clare had started cooking lunch already and laid the table in the garden. Fortunately the garden is sheltered enough to allow us to watch the trees dance in the breeze.

A letter arrived from the UHW Cardiology department to arrange wearing an ambulatory blood pressure monitor for twenty four hours. The date given is when we're in Tenby on holiday. I called the appointment booking number to re-arrange it six times, The number rang, but  no reply. I was cut off twice, and got an out-of-office automatic response twice again. I returned a copy of the appointment letter with one of my own reporting this, stating when I am not available and asking for an acknowledgment by email or SMS. I don't look forward to wearing one of those devices as they are so disruptive, day and night and stressful to have to wear. It's hard to see how accurate they can be. There are smart watches that can monitor blood pressure. They may not be as accurate, but either way, what are they going to produce except a lot of high readings which will prompt another medic to recommend a pharmaceutical solution which is reduces my quality of life even further.

Most of today my head felt as if I'd been aroused from deep sleep and not yet woken up, my brain slow and dull. Writing the letter and printing it was an effort in being patient with myself. The task was eased by using my Linux workstation, which is very responsive - no latency. Having to wait for the phone or a Windows device to respond can produce lapses in concentration and transient memory, requiring a repeat of the procedure and train of thought in order to make progress. It's so frustrating and tiring.

Enough for today. Straight to bed now.

I went out and posted the letter I'd written after supper and enjoyed a beautiful pleasant sunset walk under a clear sky streaked with clouds shaped by high pressure air producing random gusts of wind at ground level. It was cold, so I stayed out long enough to complete my step quota on arriving home.