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.