Ann in hospital

Ann with a brave face

 Ann has had a tough time since my last blog, with severe bouts of recurrent atrial fibrilation causing palpitations and leaving her breathless. It started over a week ago, causing me to state "If you're no better by Monday, I'm phoning the doctor!" It wasn't, so I did, but without success. After holding for a long time, I finally got through to a receptionist, who needless to say wanted a full description and diagnosis, but seemed to cut me off half way through. I told Ann I was going to drive her to A&E, and her willing cooperation was a measure of how ill she was. But not to West Suffolk, after the torrid time before when she was left in a chair all night without so much as a cup of tea. This time we went to Addenbrookes. 

We got to A&E early Monday morning. Ann was quickly seen and given an ECG, then the doctor came through and said she was going into the resuscitation unit. I followed, to see her strapped to monitors, with a drip in place, and subjected to various blood lets. Much later, she was taken up to a short-stay ward for continuing observations and intensive treatment to try to control the heart rate, which at one time had reached 180 very erratic beats per minute.

On Tuesday, they let her home with an O/P appointment for Thursday, but then they readmitted her for another night to try and stabilise her. All this time, Edwin and Andre had come over to share the visiting and look after us, doing some shopping and cooking meals. They even brought over their super-powerful vacuum cleaner to hoover up all round the house! And on Thursday evening they took me for a meal at a fine old pub they like in Cambridge. Ann has now been home over the long weekend, and is thus far feeling a little better, thankfully. The nurses are now on strike for a couple of days, so hopefully she will not require more attention! She has a further appointment on Friday, so must rest quietly till then - not something Ann is easily capable of. We are now taking bets on which of us might die first! Anyone care to set the odds and make a wager? Survivor to settle up all debts.

Let the dice decide

On going north

A visit to Haworth

During a joyful trip north to visit our grandson Luke in Leeds two weeks ago, we were looked after right royally in the Yorkshire Moors home of Dan and Faye, enjoying their generous hospitality of a home-cooked dish, a fine pub meal, and Whitby fish and chips wedged in-between. Returning south, we detoured via Haworth to savour the wild romance of Bronte country from an isolated base at the Silent Inn. Dinner there was first rate, but at breakfast Ann opted for the 'continental' which consisted of a burnt-black croissant followed by fruit. The waitress asked, "what fruit would you like? An apple, a banana or an orange?" Opting for the banana produced a ready-peeled, melancholy piece of fruit, already sliced up and sitting forlornly on its plate. On settling up, the landlord said in his wide Yorkshire accent, "This is't best bit, getting the cheque!" Certainly, it was better than trying to eat Ann's breakfast.

Today I tried to go to Clare to walk the dogs and do a bit of shopping. It was nine a.m. but already the place was packed; the auction was on, Clare market had stalls filling the High Street parking places, and there was a fun-run in the park with paths roped off and the carpark already full, with an early traffic warden issuing tickets like confetti. Walking the dogs would have been impossible, so I went on to Haverhill where the park was deserted - I was the sole dog walker and mine the only car.

On Haworth Moors

Today, too is the Grand National, which holds the same appeal for me and Ann as it does for so many in England, binding the nation as once the Cup Final used to. We carefully chose our horses using a judicious mixture of reading the form, the potential endurance of the mounts, judging the going after the night's rain, the happy resonance of the horse's name to stir some romantic memory, and a helpful pin. I logged onto the Paddy Power website and discovered I still had £38 in credit from last year's race! I don't even know which horse came in to produce this vast win; I certainly didn't think we'd won anything, or I would have gone back to claim it.

So, this meant we could each back our favourites plus a second horse for an outsider interest - and it didn't cost us a penny! Now we can watch the race with double interest, and for longer than it normally takes our lead horses to fall.

The penalty of time

 Old age has crept slowly upon me, almost unnoticed, certainly unacknowledged, until these last few months. I find more excuses to delay small jobs, or to avoid walking too far; where once I held lightly to the banister to keep balance, now I grip it firmly as I descend, stomping my feet stolidly step by step to avoid a fall that now would be fatal. I grip it hard going up to, to pull my heavy body against my weakening legs and painful knees, keeping my head down to see each tread with a sigh as I crest the top. Walking has become a slow shuffle, feet hardly clearing the ground and catching all too readily on any slight obstruction or irregularity. I have not tackled anything steep for a long while for slight slopes have become as hill sides, making the breath heave as though running. Dog walks have become slower and shorter, but happily the dogs can still bound off the leads and run far further than I could ever walk.

My grip, too, has weakened to the point where Ann has to loosen the caps of water bottles by my bedside since I once woke with my mouth dust dry, but could not open a fresh one. On a recent trip to London, I had bought a container of screenwash to top up the car, but the car park was empty as I searched for someone to open it. Finally, I saw a man approaching from the lift. He seemed to see me but veered off so I moved to the other side of the pillar to intercept him; but I was wrong, he kept straight on so I suddenly stepped out from behind the pillar to confront him, waving the can before him, and asking if he'd do me a favour by opening it. He looked surprised, but did so willingly, even asking if I needed help to pour it into the tank, though I refused this. Afterwards, I wished I hadn't because I didn't screw the lid back tightly enough, and when later Ann and I returned to the car, we were overwhelmed by the smell of antifreeze from the nearly full contents of a five litre can that had completely soaked the carpets.

My memory is lacking in so many ways; I struggle to recall names, and swear Ann hasn't told me something when almost certainly she is right to insist she has. I go on errands, but will always forget something unless I write it on a comprehensive list of "things to do".  All my life I needed glasses for distance, a great disadvantage when sailing in heavy rain, yet now my eyes alone seem to have improved with age. Although the acuity must be less, the lenses have settled into a relaxed position whereby I can see with six-six vision without needing glasses; but this advantage has come too late to be truly beneficial. 

We have just read the book "The Seven Ages of Death", by the forensic pathologist Dr Richard Shepherd. I cannot recommend it too highly, despite its title, for he is a wonderful writer with a brilliant command of English and well worth reading for its medical insights and descriptions, despite its gruesome nature. He quotes Shakespeare's seven ages of man, with old age the sixth age: "His youthful hose well saved, a world too wide for his shrunk shank; and his big manly voice, turning again toward childish treble, pipes and whistles in his sound." But the seventh age is: "Last scene of all, that ends this strange eventful history is second childishness and mere oblivion; sans teeth, sans eyes, sans taste, sans everything." This is extreme old age, and awaits us all least overwhelmed by some earlier misalignment of our genes or accident. Once so remote, now lurking round the next corner, it draws ever nearer but not with regret or sadness; rather I find with a joy for each new day I'm given, wherein I can still walk and see and enjoy a great book, even one about that great and final leveller, old Death himself. "As Terry Pratchett might say, "STEP THIS WAY. THE DOOR NOW IS CLOSED." (For non affectionados, Death always anounced his presence in capitals, with a deep resonant voice).

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.