The Psychological Anatomy of Pain

 The pain in my thigh was severe, constant, banging on the ceiling of my consciousness for attention and waking me at night. Last week I rang the hospice for advice, and they were hyper-efficient, sending a nurse called Nicola the following day who spent a long two hours interviewing me and Ann, less about the pain but more about how we wanted to handle the terminal phases. To direct questions, Ann bravely said she wanted to keep me at home and I said I didn't want to be resuscitated, to which she said they could stick DNR notices round the house to make sure any ambulance people got the message. She recommended paracetamol and co-codamol, with an offer of morphine if the pain escalated. Also, at a very practical level, she contacted the oncology team at Addenbrookes to arrange a scan. The appointment came through on Friday, and late on Monday evening a had the CAT scan. The first results were through for the head the same evening, showing the atrophy of the brain I have already commented on.

The other results trickled through the next day, surprisingly showing that the cancer was stable in the lungs and liver. The nodules have not increased in size, and there are no further metastases. The scan did reveal a hitherto unknown degeneration of the spine with scoliosis (curvature), which explains why my posture is bent as a tired comma. But no metastasis was seen in the bones, particularly the upper thigh. The pain is most probably referred pain from pressure on the lumbar nerves in my back! This has changed my whole attitude to life. Hitherto I had been told I would be dead within 12 months, with September looming daily, unavoidably closer. Now it is one more stop on life's journey rather than an ultimate terminus. Now, the pain has not changed, but my whole attitude to it has. It is no longer a marker of impending doom but a sign of aged decay, typical of the pain anyone might get if they live long enough, but not fatal. Suddenly, I am not trying to supress it completely or wondering if I ought to request morphine yet. Suddenly, it is merely a nuisance to be ignored and lived through. 

View from Borley Church

When I was a medical student, it was still accepted that we used euphemisms when talking in front of patients. Cancer was 'mitotic changes' or vaguely, 'neoplasia'. Gradually this changed and transparency became key. We told patients directly to get their affairs in order or say their goodbyes. I was one of those at the forefront in bluntly hitting them with an unpalatable message, and I remember witnessing the sudden change in demeanour, the shoulders drooping, the downturned face, the heavier step as they turned to leave. Now I have experienced it directly. Now life seems worth living again, for I might yet have a year or two rather than a few shrinking months. Life is much better imagining a bright ongoing future, rather than a shortening path to a certain death. My art today is 'The View from Borley Church'. Borley is a village in Essex whose church and rectory are reputed to be the most haunted in Britain. The churchyard was cold and shadowed even in summer, but the view north was across to Suffolk, looking sunlit, warm and inviting. Thus do I feel as though I have stepped from a cold, dark place haunted with fears and death back into the sunny fields of the living. I have learned that hope is the most valuable medicine of all. We must not destroy hope, but encourage the belief that there is always one more thing we can do before the end closes about us. 

I have a further scan

Form No. 1

The Hospice team certainly produce results. The nurse, Nicola, came last week to do a home assessment and recommended some anaesthetic pads to ease the pain in my thigh. She telephoned her advice to the surgery and the pads were with our pharmacy in Clare the next day! I have to stick one on the thigh each night, where they slowly release their chemistry to numb the area. They contain a similar local anaesthetic that dentists use to extract a tooth, and in combination with strong Co-Codamol they definitely work. She also recommended a scan to assess the new pain. Remarkably, the appointment for this came through in Friday and I was in the CT unit at Addenbrookes on Monday. Additional to the thigh, they have also scanned my head, chest and abdomen to check on progression and assess my suitability for radiotherapy (RT) treatment. They had to repeat my head CT - I guess they couldn't believe it the first time. They work late and I had the scan in the evening, but they still posted the results for the head online the same night. It showed "general cerebral atrophy", but no malignant spread to the brain. So my brain has shrunk - but I could have told them that, for my whole body shows general atrophy, my thoughts come slower and less imaginatively and I often forget what I'm doing and sometimes struggle to bring a familiar word to mind. The penalties of aging - slowly going ga-ga as well as getting weaker. I know I shuffle round the park to walk the dogs - now I shuffle through my thoughts as well. We now just await the results from the rest of the body, and will see what they recommend. Maybe one blast of RT will shrink the spreading beast and ease the pain.

An Orchid for Ann

I have bought a new maths graphics package. It was only £20 and is great fun and easy to use, even for non-mathematicians. One just types in any equation and this package graphs it and can even colour it. I am using it to draw strange and interesting forms; this first one I have called Form No. 1 (no marks for originality), and for the mathematically interested, the equation is very simple: x²+y²+sin2x+sin3y. One doesn't need to know what the equation means, but I then painted the resulting shape in oils onto canvas and voila - a new piece of art!

Much more beautiful is a gift from Matthew and Rosie which they bought for Ann on their visit last year for my 80th birthday celebration. It is a small orchid in full bloom, growing as a bottle plant so it rarely needs watering, and has been blooming for nearly a month already. 

The Death Doula

 I have learnt a new word today: the Death Doula. I discovered it in an online magazine I read called Artnet News about an American artist called Every Ocean Hughes who was trained as a death doula and does strange photo-montages to suggest death and rebirth. An alternative name was Death Midwife, but the midwives' organisations objected as they claim the word midwife is reserved for their own work as birth midwives. I thought the term must be some weird Americanism, but it is defined on the Marie Curie website from an ancient Greek word as someone who supports people at the end of their life, often focusing on the emotional, psychological and spiritual side of dying, as well as the more practical things. 

On Tuesday I was visited by my own death doula: a nurse from St Nicolas Hospice called Nicola who explored my life with Ann and wanted to know every bit of support available to us, including details of each of our children and our relationships to them. Her practical questions included asking "where do you want to die?" and "Do you want to be rescusitated?" Perhaps they'll pin DNR notices to my chest to let everyone know. We have a battle ahead, and I am reminded of some words of Chesterton:

"I bring you naught for your comfort,

Naught for your desire,

Save that the sky grows darker yet,

And the sea rises higher."

Then silence sank. And slowly

Arose the sea-land lord....

...And from a cobwebbed nail on high

Unhooked his heavy sword."

But she did suggest several practical ways to ease my leg pain and end of life care, including getting a scan of the leg and possible radiotherapy to reduce the bone metastasis and thigh pain, which is severe when it strikes in the night. She also suggested anaesthetic patches to put on at night, and arranged their collection from our local pharmacy. Very efficiently, they were ready today so tonight I'll give them a try. The bone errosion leaves the femur even weaker than the weakness induced by age, so she reinforced the care we older ones must take not to fall and risk a fracture. 

A reminder of mortality

Whom do I approach for a full refund? Who insures the craft we are gifted? To whom may I complain when the chassis fails, or a wheel comes rolling past on an open country road? Perhaps there was no life-time guarantee, for all are doomed to fail. Hitherto, I could ignore my own failing body. I heard the oncologist tell me this myeloma had now metastasised to multiple secondaries in the lung and liver. She is an intelligent, knowledgeable woman in whom I trusted and believed, yet I lived as though nothing had changed. True, I have slowed down, grown weaker, less able to walk far or up gentle slopes, but there was nothing to see or feel. I am not coughing up nasty phlegm or turning bright yellow, and have been pain-free and sleeping well. 

But now I am sent a reminder of mortality, for there is pain. It is mid-thigh: a dull, constant ache that occasionally screams to make its presence known - sharp, determined to be noticed, sufficient to stop anything else I am doing or violently wake me with a jerking jolt in the ungodly hours of night's darkness. The pain has not yet been blessed with an official name, but when I phoned the oncology team at Addenbrooke's their simple advice was to phone St Nicolas Hospice. Sometimes a simple tone of voice is sufficient to convey a thought, for the hospice nurse sounded sadly rueful saying she would conduct a home visit next week, despite my protestations that I am still mobile. There is much to be said for private funding: contrasted with the overworked NHS, the staff answered the phone swiftly and clearly have time for a home visit, even from Bury St Edmunds.  My 80th birthday binge yielded over £500 towards the hospice fund, so my thanks to all who contributed so much towards keeping the hospice running.

Helena Bonham Carter

Friday found Ann and me sat before a potter's wheel. Never had I imagined doing this, but a Christmas gift from Edwin and Andre was a voucher for a two-hour lesson for two people. The teacher has only been doing pottery herself for two years, having taken it up in lockdown rather as I took up painting, but she has turned it into a commercial success, running a well-positioned, attractive studio close to the centre of Bury. As well as selling her pots in the shop, she runs several classes each week and is well booked up until Easter. Six of us huddled ambitiously over our wheels, dreaming of attractive plates or cups we might fashion. Well, never have Ann or I been in such a mess. Clay seemed to be flying everywhere, covering my jersey and jeans despite the apron she provided, and ending in Ann's hair. At the end of two hours, Ann had a decent looking chalice, but my best efforts wouldn't rise as I wanted, so mine looks more like a misshapen dog bowl, for a very small dog. Our efforts are to be fired in the kiln, which is very brave of her as she threatened they could explode if we didn't do it right, and mine was folded and refolded so many times I'm sure it must have water or air bubbles trapped inside. I will stick to my painting, which I enjoy and generally produces vaguely recognisable results.

My eightieth birthday binge

Ann, Eds, Andre and Lucy dancing

My 80th birthday has been celebrated in style. Everyone who loves us was there, including many of our neighbours, and it was the people there who made the night a joyous success. Edwin and Andre had arranged everything - mostly. They hired the hall, arranged the catering, bought the decorations, booked a DJ and – on the day – with the help of Ben, Kaz and Luke, blew up all the balloons and set out the tables. The one thing they could not order was the cake! Never had Edwin met so much negativity as from those so called cake chefs. None was available, and often declined in a very rude manner. In desperation, he handed the task over to Ann. She too had difficulty, probably phoning many of the ones Eds had tried. Finally, a local person answered Ann's plea on Facebook and promised to bake one, to be ready on the morning of the party. The day started wet and I overslept. The boys left early for their haircut before collecting the hall key, and we followed. I went off to pick up the cake, but I was early at the house and no one answered for a while before her mother came to the door in dressing gown, saying, "My daughter does them. She's still in bed." Eventually she dressed and came down, carrying the most delightful looking confection. Our relief was palpable.

Cutting the cake with Lucia and Theo

The DJ was brilliant playing so much variety over the eight decades, including many of our favourites to which many of us danced, even me waving my stick about. Ann and I went as 60's hippies, Edwin was Taylor Swift, and Andre Ed Sheeran. Ben and Kaz came as a priest and nun, while Matthew and Rosie had the nerve to come us me and Ann! They were brilliant, and Matts looked more like me than I do.

Ben, Andre and Kaz

Lucy and Theo

Mateo, Lucy and Luke

Ann and I trip the floor

Who is which?

I am privileged to have made it through the world for eighty years, for many of them supported by and in the company Ann, the best companion a man can have.  Most of them have been wonderful, memorable years, but all have been defined by the people I have met, especially those who add to our lives as did the people who came to support this celebration. Many of them travelled great distances to be here: Ben and Kaz from Telford, my brother Richard and Chris from Coventry, and Lucy, Matthew and Dan and their families from the north. Even many local friends braved the cold night to come, including our neighbour in his wheelchair. Thank you all so much. You will not be forgotten when I remember this wonderful day; your presence added to the occasion. 

Happy Christmas everyone

Our Christmas Hearth

Yesterday we went to Rae and Malcolm's for mince pies, and now it is Christmas Eve. Edwin and Andre are here to share Christmas and prepare for my grand 80th birthday bash. A large number have said they will come, so we hope the weather holds out. If the snow returns, we may be limited to a few local people. Christmas is upon us, meaning more work for Ann and not much change for me, now I am mostly retired. We have a large box of fruit in the kitchen, and Ann has been so busy she watered the pineapple. As always, the hearth and its warmth take the centre of the room, and Ann has decorated it in beautiful simplicity. It is surely no coincidence that the hearth contains the heart. Christmas shopping this week, Edwin was next to a young couple with a pile of wrapping paper in their trolley when an older man walked past. "Oh," he said, "are you only just doing it? I have a wife and four children and a full-time job, but I got all my presents wrapped a week ago!" 

I always welcome the winter solstice with its hope for longer days and a promise of regrowth. We have passed the turning of the year, and "as the day lengthens so the cold strengthens," as my mother used to say. We must hope we don't get the weather they're experiencing in the US, or our boiler will never cope, even without an energy crisis. It has been quite a year, with three primeministers, a change of monarch, a major European war, and a cost-of-living crisis, all additional to the passing of sentence of execution in my own case. 

I have been watching His Dark Materials, the third part of which is now being broadcast by the BBC. Many have criticised it as blasphemous, but I interepret it as only anti-organised religion. I have always thought it a gross arrogance to presume that any one religious doctrine is the absolute truth and all others are a lie. No one person, surely, can have no more than a glimpse of the unknown. So many glimpses give us a hint of a shadow of truth, but the whole truth is hidden. I attempted to explore it in my book, Girders in the Sand, suggesting that there is a reality beyond that of which we are conscious, His Dark Materials chimes with this, Suggesting as it does that organised religion seeks to control the minds of its adherents, yet beyond it is a deeper truth, wherein there is a mysterious connection between living beings and the universe that created us. It is a book of great depth and thought-provoking subtlety.

A gay wedding

 On Friday, Ann and I were in Middlesbrough for the event of the year - the marriage of Mike and Ryan. The wedding was scheduled for 11:30 in the registry office. We arrived at 11:00, where we gathered on the steep steps to the old Victorian  Town Hall. 

Mike and Ryan with Theo

Ben and Luke

 The two special men were dressed in matching suits and very smart. They and the two fathers were taken into the registrars room where a gentle, patient woman guided us through the brief requirements for the ceremony and verified that all names were correct for the register. Ryan and his father went first to wait before the table, then I walked Mike down the aisle; the first time I have had such a special privilege and I was honoured to be asked. Each father was asked in turn if we were happy to support the wedding, answering "I do"; we then sat as the ceremony proceeded. It was a moving event, with great commitment from Mike and Ryan. The registrar asked if anyone present knew any reason why the marriage should not go ahead, at which point Mike turned to look at us all and said, "if any of youse lot says anything, I'll kill yer!" making everyone laugh. Then little Theo, dressed to match the two men, shyly brought up the ring box with the two rings inside for each to wear. 

Ann and I at the wedding

The two men at the reception

The wedding meal was limited to the immediate families, but as each groom was one of five siblings, this was still a large number. Ann and I sat next to Mike and opposite Ryan's parents. To our surprise and an emotional delight, they gave us each a book marked "John" and "Annie", carefully put together by Ryan with some of our poetry illustrated with appropriate images. We were moved to tears at such consideration.

The reception was held in a large venue in Middlesbrough, so large indeed that Ann and I wandered into someone else's reception, and Richard and Chris went into a 50th birthday party upstairs. Mike and Ryan's venue was quite special: tastefully decorated with a dance stage backed by a "Mr and Mr" silver sign. The disco was loud, the food plentiful, and the cake huge. We had returned to the hotel after the meal where I fell asleep, so we were a little late and missed the cake cutting, but not the eating thereof. Almost our whole family was present, including my two brothers, Richard and Peter, and Peter's daughter Laita, whom we hadn't seen for many years. There is so much hatred, bigotry, prejudice and oppression in this world, it was truly wonderful to see so much support for this wedding, where even old traditionalists could see two people committing to each other in love, and celebrate their happiness.

Ann and Chris

With brothers Richard and Peter

Lucy with Lucia and Mateo

Rosie and Matthew

The next day, we dropped Ann to see her sister, Jane, while I slipped down to Middlesbrough to see Arwen and Nye, the grandchildren we had missed on the day. Then, a tiring drive home down the long A1 to two mad dogs thrilled to have us back. Altogether, it was a fantastic day and worth the great effort of getting there. We wish them both well in their commitment to a life together.