Newsy catchup

A family photo

Yesterday afternoon was a follow-up appointment with the oncologist. I am still short of breath on effort, my ankles are swollen, and I have peripheral neuropathy with numbness and tingling in the fingers, but my blood parameters for renal function have been improving, and even my haemoglobin has increased from 9.0 to 10.0 g/dL (normal for men is 14-17). My fear was that she would offered me the choice to continue treatment or not, saying "we can try one more if you'd like to", which would put the onus on me, with consequent worry if I had made the 'right' choice. If I went into renal failure again, I would probably wish I hadn't gone on with it, or if the cancer came back quickly, I would have regretted stopping. Nevertheless, the consultant decided I should permanently stop the immunotherapy, as at my age it may be doing more harm than good. I had been wondering whether to request it be stopped anyway, so now the decision is made for us, and I am glad. We asked about the overall prognosis, but she refused to commit, saying she will know more when I have had my next full scan, delayed through after-Covid pressures on the NHS. She ended by saying I might die of old age yet. I said, "you mean I might live to 88 instead of 80?" but she looked doubtful at this thought! Perhaps she meant 81 instead of 80.

My brother Richard and his wife, Chris, visited on Saturday, their first for nearly three years. Edwin and Andre joined us for tea to introduce Andre to some new members in our family. Needless to say, Bronte insisted on being included in the family photoshoot. Richard has lost much of his hair, but otherwise is in remarkably good health and is currently arranging a five-mile hike for his men's group. In contrast, I remain hairy on top while being a complete wreck underneath.

Mike has sent Ann a belated Mothering Sunday gift of a bracelet and a book of Bronte letters. This is so thoughtful, and reflects a rare love for a good stepmother. In pleasing Ann he pleases me, so the gift is doubly appreciated. He and Ryan run a new business from home designing websites, and which seems to go better each month, so we all wish them well with it.

Even though the majority of the population have been well jabbed, Covid seems to draw closer despite - or because of - the new freedoms we're enjoying. Next weekend, Ben and Kaz should have stayed with Luke, their son, but Ben has gone down with Covid for the second time and is quite unwell. Andre and Edwin had invited them over for Sunday lunch, so that will not happen either. Luke is studying computer science at Leeds, and gets on well with Andre whose career is also computerature. One of our friends in Haverhill, Malcolm, has also gone down with Covid and Edwin had it recently, so we are all too aware of the continuing risk. Malcolm also is well into his 80's, so our thoughts are with him for a full recovery.

Time to abolish general practice

Our GP surgery is proving increasingly incompetent and incapable of providing even basic services. I came out of Addenbrookes Hospital ten days ago, having been admitted with acute kidney failure (AKF). The treatment there was excellent, despite crowded wards and huge time pressures on the staff. AKF is monitored by measuring the blood levels of two breakdown products excreted by the kidneys: urea and creatinine. Both had been high on admission, but fell with treatment, and the consultant oncologist requested the GP to arrange follow-up blood tests after my discharge. 

It took three visits, a phone call, and an email of complaint from Ann before they would issue the blood form, and I finally I had to take a copy of my discharge letter in because the surgery couldn't find it. Then one of the GPs phoned in response to Ann's email to say the form would be ready to collect yesterday morning. Needless to say he was abrupt and annoyed, not bothering to even ask how I was since coming out of hospital. Ann went into the surgery, but the staff refused to give her the form, insisting I had to go for it in person. She was furious, and wrote about the experience on the Clare Facebook page. Of course, the GP surgery themselves don't do blood tests anymore, so I had to go to West Suffolk or Sudbury. Neither is available as a drop-in service anymore, and there was a waiting time of one week at Bury and ten days at Sudbury. In the end, I went to the drive-through centre at Cambridge, and they agreed to do the test there as it was for Addenbrookes.

I am writing this blog as Ann thought her Facebook post might attract a few replies from people to say they had had good experiences at the surgery. In fact, there was a torrent of responses, all negative, some heart-breaking, saying how poor was the service they had received. I was in hospital and GP practice for over twenty-five years, including time spent as a locum at the Clare practice when we first moved to Suffolk. We used to pride ourselves in being a family service, knowing the people of Clare, and giving a personal service with rapid appointments, and home visiting. Now, all that has gone by the board. Covid may have precipitated the end of traditional general practice, but there is no sign that it will ever return. 

I earnestly believe that general practice in this country is now dead. It should be completely scrapped, and a new salaried drop-in service started to replace it, supplementing the excellent work of A&E departments, and taking much of the pressure off them. All patient records are now available throughout the NHS, so anyone with an NHS registration number should be free to go to whichever drop-in centre they wish. These centres would be adjacent to pharmacies and a nursing station for blood tests and general procedures currently done through GP services. The whole thing should be centrally organised, streamlined and aimed at the convenience of patients rather than the profit of GPs. It is time for a fundamental overhaul of primary care in this country, and this must start with the abolition of GP surgeries which refuse to see patients or apply basic common sense.

 

Ann goes to London

The boys took Ann to the Stonehenge exhibition yesterday. Although it is something I would have loved to see, Ann walked five miles. London is like that - there is a plethora of transport with tubes, buses, taxis and Ubers, yet one always seems to walk miles between places. The British Museum itself is huge, so many of those miles were trodden in its hallowed corridors. Quite rightly, they all think I would not have made the journey, and I believe they are sensibly correct. Their only brickbat was to suggest I could have gone round in a wheelchair. While this is probably true, at the moment I value my independence more than a visit to the BM, so I will continue to walk locally within a shrinking radius.

Edwin was invited to one of the ancient colleges of the University of Cambridge this week. Emmanuel College was founded in the reign of Elizabeth the First, and is filled with tradition supplemented by fine wine. Edwin is now professionally engaged as a post-graduate advisor at UEA and Ipswich, and he appears to have held an interesting debate with one professor about the state of finances outside the golden courts of Oxbridge. Over the cheese and port, he was also able to chat with the guest of honour and alumnus of the college, Sebastian Faulks and his wife. Edwin has the remarkable ability to talk easily with people from all walks of life, and is brilliant at making new contacts. I feel his future is only just beginning, and we wish him all success and joy in the journey ahead.

Getting ready for the bath

The boys had read that finely ground oatmeal in the bath may help itching. My skin is a perpetual irritation, both to myself and to those who watch me trying to stop scratching, so they have ground up Quaker porridge oats in their food blender for me to try. I must admit there does seem to be some benefit, and I am certainly having more baths, which is like stepping in a large bowl of thin gruel. I suppose it is no different in principle to Cleopatra bathing in sour milk. One of the strange side effects I currently have is persistent tingling of the fingertips, and moderate numbness. This means I have to be particularly careful picking things up, especially glassware, as I am becoming even more clumsy than usual.

Once, the news on TV or wireless was a broad sweep of world and local events. Nowadays, especially with TV news, they seem only able to focus on one subject at a time, with undue emphasis on "vox pop". This week with our (largely) government-induced financial problems, they have switched from war to impoverishment. COVID hardly gets a mention despite hospital admissions for the over sixties  being greater than at the height of the pandemic. I wonder what next week's cataclysm will be.

Michelle remembered

 

Michelle remembered

Ann's sister, Jane, contacted me unexpectedly a little time ago to ask if I would paint a portrait of her daughter, Michelle, who died a few years ago. She was a beautiful girl, full of life and ambition, who loved all things Japanese and spoke the language well. She also worked for GCHQ/MI6, though naturally we knew little of that side of her life, other than at her funeral, two coaches came up from London and Cheltenham each filled with people to honour her memory. One of the chiefs from MI6 delivered the eulogy, telling how her work could never be acknowledged, but that many people owed their lives to her. However, I have attempted to portray her gentle grin, her deep brown eyes, and her clear complexion. She is against a soft blue sky with encircling of cherry blossom, and partly hidden by soft curtain of hair. I have even sent for a frame for it: the first canvas I will have framed.

Ann is in London. She went yesterday with the boys, a friend of theirs and her mum, to see Moulin Rouge, booked nearly a year ago but delayed through lockdowns. Today they have visited the Stonehenge exhibition at the British Museum. Now Ann says she is on her way back, but won't say where from, so I remain unsure when she will be back, or if she will have eaten. Once when she went off with the boys I cooked a simple supper, but they came in with a take-away meal. The house is very empty without her.

The omen crow is hovering

A halfway rest in the Nuttery

Whenever I see the hospital doctors (rather too often these days), one question they ask is, "how much exercise to you do?" I tell them, I try to walk the dogs each day, perhaps for 20 minutes walking half-a-mile, for I am a slow walker. But these days, I try to choose walks where I can sit down halfway round. Yesterday was sunny and warm, when Clare Park gets crowded, so I walked up behind the Swan. there are a couple of split tree trunk benches where I can rest when it's dry. I don't like to take selfies, but I did here to capture the moment of tiredness and my gratitude for whoever made the benches and kept the woodland for public use.

I am, I know slowly dying, a complication of being nearly eighty with two cancers, one of which has metastasised, and with my organs slowly fading. I cannot do much physically, and my mind too is slowly deteriorating as I take longer to grasp for the words I want or to remember things. I am not afraid of dying, for to paraphrase the carol, "In that deep and dreamless sleep the silent world goes by." Indeed, it will go by, unheeded by me and commented on by others, some still young, some still to be born. Yet I resent the presence of death circling round like the omen crow in my poem about Copernicus, The Timid Hero, from Girders in the Sand: 

Through hazy, damp grey vapours’ swirling chill,

An omen crow descended silently

Then waited on a framing window stone,

Grey in grey mist about a weathered tower.

I did not, of course, have myself in mind when I wrote this, some thirty years ago, yet now I feel I was describing Copernicus awaiting death with percipient clarity, yet I resent this crow for I enjoy life and would love to experience more of it. Indeed, returning to the Swan carpark, I had a pint of shandy in the warm sun and enjoyed it hugely, with the added virtue that the consultant had told me I must drink plenty to keep the kidneys working. 

Jetsom

I have never been so alone,

so cast out 

unkempt,

disregarded,

sitting on a rock,

not the beautiful mermaid,

but a barnacle

clinging to the remains of life.

by Annie Elliott

Of course, it is Ann who takes the brunt of this, not only in having to run around and do so much more, but from the agony of watching my illnesses develop. In this, she stands alone and I feel her pain, though the cause of it and unable to relieve it. Soon she will be alone, and already she thinks of the things she will have to do that hitherto were my job. That this happens to one half of all married couples is no comfort. To tell her, "he had a good innings," is salt in the wound: I never have liked cricket, so don't use cricket metaphors. But I must end this morbid piece; I'll be writing my own obituary next, and perhaps pre-recording it, so at least my memorial address will be words I have pre-approved.

A week of multiple failures

A bad day on Wednesday with high fever and numbness in both hands. Next morning, we phoned the oncology nurse who said to come straight in via A&E. They ran a batch of tests and sent me to the oncology assessment ward awaiting their decision, then admitted me overnight. It seems I have AKF (acute kidney failure), so was given high volume fluids through a drip and started on antibiotics. My immunotherapy session, due this morning, was naturally cancelled, though there is vagueness about it being causative.

lip service again

don't tell me 

everything is going to be okay

because it is not,

don't patronise

or condescend

keep your platitudes

for your own grieving

I only need honest friends.

by Annie Elliott

I arrived on the ward without even a book, let alone clothing, toothbrush or pyjamas. The hospital still bans visitors for 48 hours (presumably they are magically safe after that period), and Edwin has a heavy cold, so kind Andre crept up to the ward door where I stood waiting, towing my drip stand behind me, to sneak it open and take a bag of things from him. Ann was not allowed to see me at all, after leaving me at the door of A&E. So often, the caring person is assumed to be alright and getting on with life, and gets too little sympathy. Ann has been through much recently, and lives in the dark shadow of more to come. It cannot be an easy burdon, so often bourne alone.

The oncology ward was crowded with nine beds in my bay, filled with men who looked older and more ill than I, and the nurses were kept busy. With age comes a degree of detachment and acceptance, almost resignation in many cases, to an inevitable outcome. Much harder must be nursing on the adjacent ward, which I noted was "Teenage oncology"; that and the paediatric oncology unit must be emotionally exceptionally draining, and take a special kind of nurse to deal with the emotive nature of those cancers. 

Mistletoe at Addenbrookes

For various reasons, MA is unable to see Ann on Mothering Sunday, but was going to take her for lunch yesterday as a treat. Unfortunately, Ann lost even this treat as she suddenly had to come to the hospital to pick me up. MA hopes to take her next Friday to make up, so hopefully all will go well. Waiting in the sun for Ann, I noticed a huge ball of mistletoe in one of the trees at the entrance to Addenbrookes, easily visible before the leaves of summer. I had noticed that mistletoe is very abundant now, possibly following two years of lockdowns and a lack of Christmas demand. In Druidic mythology it occurred in the Ritual of Oak and Mistletoe, and evidence from bog bodies suggests its Celtic use was medicinal. The Romans associated mistletoe with a way to the underworld, but also with peace, love and understanding and hung it over doorways to protect the household, and mistletoe continues to be associated with fertility and vitality. All in all, it is an appropriate if accidental symbol over Addenbrookes.

After many years' silence, my son Dan got in touch to suggest we meet up and try to repair an old rift. He suggested I visit London this weekend, but I am still too weak to go far, and will be unable to travel to or across London, so the reconciliation has been put on hold.

The world news grows daily more alarming, with Herr Putin rattling his nuclear sabres, and demented Biden managing to open his lips to tell us the US is prepared for a first nuclear strike. The MAD world (mutually assured destruction) has risen from seventy years of dormancy as a fresh spectre to haunt our dreams. Nowhere is safe from such lunacy. War creates nothing more than poets to lament the dead; only working together with mutual support ever generated peace and prosperity, and such mutual trust is rapidly dissipating. I believe no one appreciated how delicate the world's interconnectedness is, or how quickly it can be broken. At this rate, we all face utter devastation, with a real fall into impoverishment and loss of hope in the world not seen since events such as the great plague, or the Hundred Years' War.  

We celebrate Andre's birthday and the boys' new home

Ann relaxing

 Edwin and Andre invited us over for the afternoon for the double celebration of Andre's birthday, and the housewarming. The house is looking immaculate now, clean brick and old flint on the outside and warm and welcoming inside, set off with their usual flair for tasteful decor. Ann immediately claimed the cushioned window seat, created by the massive thickness of the walls, while I sprawled on their three-seater settee next to the nibbles. 

Two other couples, Brazilian work friends of Andre, were also due. The women arrived first, having come from Cambridge by train, and not long after the two very fit men also arrived, both having cycled a distance of some 30 miles. Food was served from a help-yourself buffet, with a great choice of quiches, cheeses and salad stuff, beautifully prepared and presented. Thank you, boys.

Mark Rylance has long been one of my favourite actors, and yesterday we saw him in his new role as the Phantom of the Open, another British true-life comedy about a Barrow in Furness crane driver who in late life was suddenly inspired to take up golf as a "professional". Brilliantly entertaining, and well worth a trip to the cinema, I recommend it. Later, in Prezzo, I found voice mail from an agency asking me to call back. I did so, but I also had to leave a voice message. Five minutes later, another agency rang to see if I was available for a job. I said I was, and would send my CV. A moment later, the first agency rang back to offer the same job. The pharma company had just put it out simultaneously to both agencies. Not sure that I will be able to manage it though, for even if they overlook my age, I cannot, and feel I will be unable to do more than a couple of days a week now.

Coming home from Sainsbury's today, Ann got a message that our bank balance had altered. "Did you withdraw some cash?" she asked. "No," I said, "I just filled up the car!" Such is the horrific price of diesel now that it is making a noticeable hole in our finances. Ann has also ordered a refill for the oil tank, so we dread to see what that bill will look like. Thank goodness we are suddenly in a mini-heat wave, with temperatures today touching 20 deg. C.