Tuesday, 20 November 2018

Who is my neighbour?

Ann attended the rheumatology clinic, to be told her broken finger was badly set, and should have been pinned. A bit late now, though, as she doesn't want it reset and in plaster with all the driving that lies ahead ferrying me to the hospital.

After the clinic, we went to Waitrose for lunch and shopping. Walking to the food counter, a thin faced, greying man called out my name and waved. I whispered to Ann, "who's that?" but she didn't know either, and then he waved at her too, so I walked over to apologise that I must have forgotton his name.

"I'm your neighbour," he said. "I see you when I'm walking the dog." Out of that context, both Ann and I had completely failed to recognise him. He and his wife moved in two years ago, and I've barely spoken to him. How much of our lives are like this, we pass each other, we nod a brief greeting, yet never know each other.

Monday, 19 November 2018

Hunting the lump that goes bump in the night.

I returned to the West Suffolk dermatologist this afternoon for my melanoma check-up. He is an abrupt, unempathetic Egyptian who usually just asks how things are, and is always satisfied if the answer is "fine", without wasting too much time checking anything in detail. Today, I mentioned that I thought a lymph gland might be a bit swollen below my jaw, and was uncomfortable at night. He poked it for a moment before saying there didn't seem much there. I added that I'd seen the oncologist at Addenbrookes on Monday, and I thought he might have written about it, so he checked through my record and found the letter.

Until then, he hadn't realised I'd had another cancer treated since I saw him last. Looking a bit abashed, he felt a little more thoroughly, then decided to refer me for further scans on my head and neck, to 'make sure', so at least something is happening, and I'm hopeful that I'll get reassurance.

On the news, all is Brexit. Against seemingly everyone on the cabinet and in parliament being opposed to her, she doggedly holds her course with persistent calmness and patience. She is beginning to win the sympathy vote for her plight, even from hardened labourites, and even from the public who think she has sold us a ribbon-wrapped turd. Yet those opposing her are too custard coloured to oust her, let alone offer any alternative with more than a pig's chance in an abattoir of getting it through Brussels.

Sunday, 18 November 2018

What life lives beneath our gaze

Dawn over Hundon
Dawn over Hundon. The sun is skulking below the horizon and will not rise for more than half an hour yet, and well to the right of our neighbour's house. It's incredible how much in life escapes our notice. At this time on a Sunday morning, Ann and Edwin, along with most people in Britain not actually working, still lie abed, yet it's the best bit of the day, and I have it to myself.





Reminded of light, I distract myself by going over old lessons in quantum mechanics. I recorded them some five years ago from a course by David Miller of Stanford, and I've just spotted a typo that no one on the course spotted at the time, including me. Professors of quantum mechanics tell us just to shut up and calculate, because the maths gives us the answers. Yet we can't help but speculate, what lies beneath those equations of Schrődinger? It remains the fundamental mystery of our age: perfect answers with imperfect understanding. Somehow, it is like religion's claims to have perfect answers with imperfect understanding, but unlike religion, it is debated. Is the answer many-worlds, or hidden and unknowable variables, or 'just the way it is' to be accepted without further question like the wave-particle duality of light.

It may lead to lively argument, but – unlike religion – it doesn't lead to cults where one has to accept everything or nothing, or death threats if you deface an image of Bohr. Give me the peace of uncertain science any day, rather than the wars of religious argument.






Saturday, 17 November 2018

Finality – Buddhism vs. Jehovah's Witnesses


Finality

We will not speak of parting,
for I will be where you are
as you will ever be with me,
I will carry every day
with the haunting memory
of every thing you said and did
every dream we ever held
and every moment lived.

Today, Edwin is at a Buddhist meditation day in Cambridge contemplating eternity, while we were visited by two Jehovah's Witnesses. Bible Ann, as we call her, is in a sad way with advanced Parkinsonism, to the point where she can barely walk. She prefers bare feet to feel the ground, even in this cold, damp weather, to help coordinate her movements. She stands for some moments before her legs suddenly begin to move, and has great difficulty with the small steps to our house. We have known her for many years, and she comes as a friend, but still displays her literature, and her mind remains clear as ever. "They say there are two types of cancer," she tells me. "Lion or pussy cat. Which is yours?"

"I think mine is more like a panther," I suggest, "it sneaked up unseen in the night."

Even at this late stage of existence, she argues her case that the believers will be segregated before God to rule earth from her heaven, whilst we will be left cursed below. "Only a few people are rulers. Since Jesus resurrects people to heavenly life so that they can rule over the earth, we would expect those chosen to be few." She is even able to count the exact number entering her heaven – 144,000. Their site suggests there are already 137,000 witnesses living in the UK, so I guess they must be filling up.

Returning from his day of meditation, Edwin attempts to enlighten us in the way of Buddhism, and the Four Nobel Truths. He describes it as very cultish, with cold people who wear it like a cloak. unlike Japanese Buddhism whose practitioners are born into it as a natural skin. There is no such thing as truth, just mindfulness, meditation, and reduction of suffering, so Cambridge Buddhists completely different from London, or Tibetan. The Buddhist must always ask questions, but without hope. There is no after life, one can only achieve enlightenment.

In dealing with suffering, he quoted the example of being shot by an arrow. To ease suffering, one must deal with consequences such as by removing the arrow; contemplating why one was struck just adds to this suffering.

Friday, 16 November 2018

Countdown to Blasting

The letter with my timetable for radiotherapy arrived this morning. It doesn't carry a radiation warning symbol, or glow green with smoke seeping out, but looks quite plain for the message it conveys. The X-rays are produced by linear accelerators working at voltages of up to 25 million volts, enough to blast deep into the bladder. The intention is to destroy the tumour cells without destoying me. The therapy will start early December and run through into January, at times that vary each day up to early evening. But they respected my request to start after 10 a.m. to miss the worst of the Cambridge rush hour.

I was right to cancel our holiday to the Holy Land – the treatments run right across what would have been the start date. I asked my GP to complete the insurance claim form, which was £32. It used to be free for colleagues, but those days are well gone;. I remain tired, and no doubt it will get worse yet, but hopefully there will be improvement again once the treatment is finished.

I will need to wear a mask during the therapy, so the team at Addenbrookes gave me a practice run. I will have my own mask throughout, with my name on it, and breathe almost pure oxygen. This makes cancer cells more vulnerable to radiation. They have warned me not to use any petroleum-based creams on the face, as they might spontaneously explode. Also, the oxygen is absorbed into the skin and clothing, so I mustn't go near a naked light for half an hour afterwards, or I could ignite. They reassured me they hadn't lost anyone yet, and don't want me to be the first. I also have to take ten large niacinamide tablets exactly one hour before treatment, to maximise blood flow to the tumour cells prior to blasting them.

This adjunct treatment augments the outcome of radiotherapy. It was developed in Mount Vernon Hospital, and brought to the UK by the treatment specialist at Addenbrookes who is now the national authority, and trying to get it adopted by other hospitals. He told me of a former patient who'd been an RAF pilot; he said the mask reminded him of flying at 50,000 feet!

Thursday, 15 November 2018

The Fight of Two Cancers — Icing on the Cake

Two cancers, alike in power, fight for supremacy within my body. The bladder cancer  I have detailed in depth. It has been excised, and awaits radiation blasting. But the first cancer, equal in malicious intent, was the malignant melanoma of the ear. It has lain dormant since last year when this blog series started (see The Black Spot, The Spot Returns, and Watch this Spot). Now a couple of soft glands have reappeared in my neck, so the oncologist is returning me to the dermatologists for review at West Suffolk Hospital next Monday. It would be ironic if, after all the fuss and anxiety about the BC, it is the silent malignant melanoma that turns out to be the more deadly.

Icing the cake
Meanwhile, as Christmas approaches, Ann has made the cakes – a gluten-free one for herself and Edwin, and 'normal' ones for me, MA and the girls, and Robin and Yvonne, Sam's parents. They are heavy with fruit and brandy, and I am given the task of icing. Partly, because I used to ice my mother's cakes, but mostly because Ann's grip is still weak where she fractured her hand, and is unable to get great force to open bottles or wield the rolling pin.


Wednesday, 14 November 2018

The Madness of King Brexit

Answering an emergency call, a fireman in Cambridgeshire took a roundabout too fast and his engine toppled over, killing a pedestrian. Unbelievably, he told the court he would drive the same way again if he had to do it again. No, Mr Fireman! If you had to do it again, I hope you would have learnt to approach the roundabout a little slower, and not topple your machine and kill someone.

The new Air Boeing 737 is fitted with a new "safety device" that causes the plane to dive if it detects a stall condition. Unfortunately, it cannot be over-ridden by the pilot even when they're flying the plane manually. Last month, a malfunctioning sensor on an Indonesian Boeing 737 caused the plane to dive into the ground killing all 189 people on board. Surprisingly, Boeing neglected to tell pilots about this new system, or how to switch it off. Please Boeing, teach your pilots how to take over manual control again if there is a system problem; I actually trust them to cope better than a failing robot.

In Britain, we have our own madness of King Brexit. Theresa May, having squandered her majority, is floundering under the weight of a situation of her own making, and impossible to resolve. In Brussels, the ambassadors of 27 nations assembled to read the new Brexit agreement, only to be told it hadn't been agreed by the British Cabinet yet, let alone Parliament, so they all went home again. Once, as in so much else, we led the world in diplomacy. Now we lead the world in dopelunacy. May is like the Grand Old Duke of York - she keeps leading everyone up the hill, then down again, until no one knows which way they're going. Never in the field of human affairs have so many owed so much trouble to so few.


Tuesday, 13 November 2018

Ring Tones and radiotherapy

Many years ago, as soon as such things became possible, I composed my own ring tone called JohN. It was a simple MIDI file, no masterpiece certainly, but a distinctive and compelling tune that I owned and could identify as my phone ringing. It has followed me all my mobile life, being converted to MP3 or other formats for transfer to each new phone.

Then I got the iphone. Apple insist on their own format for music, so I had to convert all my libraries to suit them. Ring tones require yet another format, m4r, so this I did. But I could not move it into the ringtone folder. Despite all the advice I could find on YouTube or in blogs, it would not load. I was stuck with a hideous alien tune for months. Finally I read that Apple had removed the RingTone folder from view! Last night, I finally managed to hack into the folders and save it there. I whooped round the house, getting everyone to keep ringing me to show off my tune, though Ann said, "it's a horrible tune, anyway."  I disagreed - it is a catchy number, and "a small thing but mine own".

Today, I went for radiotherapy planning. I had a scan to find my bladder, before being marked with three permanent tattoo spots so they can set the machine up exactly the same each time. The treatments will be intensive, but won't start for two to three weeks, so will run right across Christmas and into New Year. I asked if they stop for the holidays, but unlike outpatients and routine admissions, they don't. They have to carry on regardless, otherwise they would lose too many treatment slots. Dr Martin promised to write a letter for the insurance company, but our holiday to the Holy Land is definitely lost.

Monday, 12 November 2018

Don't retire - and have plenty of sex!

Due to rising costs and unmeetable needs, the government's new goal is to prevent illness rather than treating it. Like the old Soviet Union and its targets for wheat and steel, they always insist on targets rather than aims or aspirations, and their target for healthcare is now five more healthy years of life, rather than a reduction in waiting times, or improvement in cancer mortality. This might be depressing, except for the wonderful way in which they hope to achieve this.

Besides the obvious ones of a balanced diet, exercising regularly and drinking only moderately that we all know about, it appears that our emotional state and how much sex we have plays a more vital role in a longer life span than our genes! But analysing the government recommendations, I find a hidden agenda. We are encouraged to:

1) Avoid early retirement and continue working. Clearly a way to reduce pension costs and benefits. I'm OK on this one - I'm still working more than 10 years after retirement age.

2) Don't act your age. This ties in with furthering liberal attitudes. People may already identify as whatever gender they wish, irrespective of what their anatomy is telling them and the distress it causes others, or what anybody else thinks. A 65 year old man in the Netherlands is insisting he is inside a 45 year old body, and wants his birth certificate altered to reflect this so he can legally lie to young women. Several columnists have argued that they wish to be considered Muslim, or Jewish as may suit them for their columns. In the USA, a 'white' woman has identified as black and claimed black arts grants. Ancestry analysis of my genetic pool shows 1-2% Polynesian. Does this mean I have the right to declare I am really from Maori stock and have a right to live in New Zealand?

3) Become a parent. Clearly a hidden agenda here, to overcome the falling birthrates in Europe (see my blog Birth-rates and coffee mornings), but I'm OK on this one too.

4) Have an active love life. Well, I used to once, and I it is true I was then very healthy. Now I don't have much sex, and I'm very unhealthy. But which came first – ill health or a declining love life? Clearly there is an area here for further research.

Sunday, 11 November 2018

Ann's Great Uncle Remembered on Armistice Day


Percy Miller Spice. Died on 11 November 1918, Etaples, France
On this day, Ann's Great Uncle Percy Miller Spice died, a victim of the Great War. 

Sapper 68178 Percy Miller SPICE. 119th Heavy Battery, Royal Garrison Artillery (RGA). Died 11th November 1918 aged 24 years. Born Herne Bay, Kent. Enlisted Herne Bay.

After three years of fighting, he died in 4 General Hospital, Camiers, France
from mustard gas poisoning during the last Flanders Offensive at Ypres
in the Western European Theatre, on the last day of the war.

He is buried in the Étaples Military Cemetery, France.
In homage, we visited the cemetery in 2009 to leave a coin of remembrance at the grave.

Étaples by Iso Rae, 1917

One hundred years later, we have no concept of conditions on those fronts. We may only turn to witnesses who where there, and their descriptions. Étaples and the field hospital at Camiers are described in the work of Iso Rae, a remarkable Australian woman artist who stayed in  Étaples throughout the First World War, and who gave a unique insight into the life of the vast British army camp there:

Étaples is a very old fishing town and port, which lies at the mouth of the River Canche in the region of Pas de Calais in Picardy. The Étaples Army Base Camp, the largest of its kind ever established overseas by the British, was built along the railway adjacent to the town. It was served by a network of railways, canals, and roads connecting the camp to the southern and eastern fields of battle in France and to ships carrying troops, supplies, guns, equipment, and thousands of men and women across the English Channel. It was a base for British, Canadian, Scottish and Australian forces.

The camp was a training base, a depot for supplies, a detention centre for prisoners, and a centre for the treatment of the sick and wounded, with almost twenty general hospitals. At its peak, the camp housed over 100,000 people; altogether, its hospitals could treat 22,000 patients. With its vast conglomeration of the wounded, of prisoners, of soldiers training for battle, and of those simply waiting to return to the front, Étaples could appear a dark place. 

Wilfred Owen [Collected Letters. Oxford University Press] described it as,

A vast, dreadful encampment. It seemed neither France nor England, but a kind of paddock where the beasts are kept a few days before the shambles … Chiefly I thought of the very strange look on all the faces in that camp; an incomprehensible look, which a man will never see in England; nor can it be seen in any battle, but only in Étaples. It was not despair, or terror, it was more terrible than terror, for it was a blindfold look, and without expression, like a dead rabbit’s.

Saturday, 10 November 2018

Autumn Leaves - living with bladder cancer

Rather than taking whatever is thrown at me from the specialists, I decided to do some of my own research into modern biological treatments. This led me to a recent research paper about urothelial bladder cancer (UC)†.

I noted that muscle-invasive cancer of the bladder accounts for 20%–40% of cases. The standard of care is radical cystectomy (removal of the bladder) with or without chemotherapy, or else concurrent chemoradiation as a bladder-sparing option. However, even after treatment, up to 50% patients develop recurrence and most patients die of metastatic disease within 3 years of diagnosis. Patients with metastatic disease are incurable, and 5-year relative survival remains dismal. Gee, thanks! And it goes on:

Systemic chemotherapy with cisplatin-based regimens is the standard of care, leading to median survival of around 1 year. For patients unable to tolerate platinum-based therapy, the median survival is only 6–9 months. Furthermore, up to 30%–50% of patients with metastatic UC are ineligible to receive cisplatin due to comorbidities, limiting treatment options. Until recently carboplatin-based regimes were the only treatment options, with no substantial improvement in clinical outcomes†.

However, after forty years, some progress has been made with the approval of several biological inhibitors in metastatic UC. The only problem is the cost: £75,000 – £150,000 per patient. I asked my oncologist if any were available, even privately, but he said not. It is approved in this country for malignant melanoma but not for UC.

Walking the dogs in Clare country park, it is late autumn. Many trees lie bare now against a clear blue sky, while others carpet the ground with bright colours of red and gold. I am determined to cling to hope, and it's hard sometimes to remember that cancer rages within me, but tiredness catches me earlier each day to jog the memory. With so much foliage dying, autumn is an unfortunate season for hope. I must await the spring, and see how my treatments progress.

DD Stenehjem, D Tran, MA Nkrumah, S Gupta. PD1/PDL1 inhibitors for the treatment of advanced urothelial bladder cancer. OncoTargets and Therapy 2018:11 5973–5989

Friday, 9 November 2018

Birth Rates and Coffee Mornings

The news this morning was filled with pessimism about falling birth rates. It seems to be a world-wide trend, though disguised in England by increased immigration. Hitherto, the great complaint has been that over-population is destroying the planet. The analogy is a change from a historical pyramid to an icecream cone, where the aged are the blob of icecream on the top.

'Normal' birth rate pyramid
and Inverted pyramid
The sequitur surely must be that the population of the world should be reduced, and if not by the four horsemen, then by what better means than a natural decline in fertility? Governments rail against this. They are concerned by the loss of young people to sustain the pensions and lifestyles of the old. They worry about the economic consequences of falling consumer numbers, with its effect on tax receipts and economic growth, or that less workers means higher wages and inflation. Many military countries worry about the number of fit people in the population to fight wars, or defend themselves from hostile invaders. This is all piffle.

The young should not be supporting the old. The young should be working for their own futures. We have worked all our lives, and should be looking after ourselves, not relying on ever fewer young folk to keep alive increasing numbers of the living dead. As we grow older, we should be encouraged to keep fitter, and work longer. Why should retirement be a right? We should work until we hit the immovable wall of infirmity.

If there is a falling population, the infrastructure will not need to be expanded; we will need fewer new motorways, fewer trains, and fewer planes. Falling tax receipts should be balanced by reduced expenditure. HS-2 must certainly be scrapped, right now, and perhaps overcrowding on commuter services will improve. In the cause of nuclear disarmament and promoting the NNPT, Trident should be pulled. Stagnant economic growth from less consumption will be balanced against the smaller work force, naturally curtailing inflation.

Military spending and numbers have been falling for years anyway. Although we elderly could not complete hard route marches and would be of little use in hand-to-hand combat, we could certainly work with the forces in a service capacity: monitoring, supplying, driving, and a myriad of office/desk jobs. Much fighting is now done remotely, through drones, missiles, or remote artillery, and training and experience will do these things as well as youth. In desperate times, conscription would be reintroduced. Of course, another way to decrease the burden of we oldies is to increase the death rate. Perhaps we should be sent to fight on the front line after all.

Invitation
So many times
I've been invited
to take coffee, lunch or tea,
but nothing usually comes of it,
although today it happened to me.

 If I relied on friends to feed me
I would be skinny as a rake,
but today I was invited for coffee
with a huge, big slice of cake!
My appointment for the radiotherapy clinic at Addenbrookes has come through, to be scanned and tattooed ready for the great burn, and this morning we went to friends for coffee!
Over the years, we have had many people round for coffee or an evening, and so many of them have said, "You must come round for dinner," or "we'll get together over a coffee," followed by silence. None of these friends followed through with an invite. We used to keep a book, but gave it up as the list grew longer. So this outing to Rae and Malcolm was exceptionally valuable and  noteworthy as a first. They even offered to help with driving me for the many hospital visits to come. Suddenly old friends are coming through for us!

Thursday, 8 November 2018

I'm no deid yet


Being Scottish, Ann's father took her there often. In Edinburgh aged 14, she saw a memorial on the Royal Mile where, in the early hours of November 1861, an ancient overcrowded tenement block on the Royal Mile had collapsed without warning, killing most of its sleeping occupants. Several hours later, as the debris was being cleared and bodies removed, Joseph McIvor, a young lad of twelve, was heard to shout from beneath the rubble, "Heave awa' lads, I'm no deid yet". This left a deep impression on Ann, and it has become our rallying cry when things look bleak.
Ann in Polaroid Print 

Poetry drew us together, for Ann's great love is literature. My only photo of her from that time is an old fading Polaroid print, but she is beautiful as ever and alluring as a longed for dream. Her skin is smooth as warm, soft silk; her breast still as firm as her youthful vigour; her curves shapely as any model's; her smile the oblivion to care; and her delicious humour and good sense the bedrock of my being. 

I am wearing my faint Mona Lisa smile after a night of relaxing exercise. Where once we romped wildly, now we move with leisured pace to sooth  and comfort gently. I ask if she remembers reading Kama Sutra by Vātsyāyana, but she replies those moves are for the lithe and young who are still flexible in joint and sound of lung. I suggest she write a new version: Kama Sutra for the Over-Sixties. She could call it, Sex past Sixty, or Romping for Rheumatics; it would be so popular she'd make her fortune. In a few weeks I may be impotent, but "I'm no deid yet".











Wednesday, 7 November 2018

Two Ways to Manage Bladder Cancer

Two strands are emerging in managing bladder cancer. First, Dr Martin, the oncologist, phoned to discuss my decision to go for radiotherapy, re-going over what I had already been told: that I would have an appointment sent through to go back to Addenbrookes for a further bladder scan, and the addition of tattoos to my abdomen to mark the spot for the radiotherapy, which might start a couple of weeks after that. I resisted the temptation to ask, why he hadn't just said that on Monday when I was in the room with him!

He emphasised that my chances of going on holiday after Christmas were small to the point of disappearing, as even if the therapy was completed by then, I might be too tired and weak to go. I also asked him if there were any recent treatments that might improve the odds, but perhaps hadn't been approved for prescribing under the NHS, even if I had to pay for them myself, but disappointedly he said there weren't.

Second, my niece in Coventry sent a parcel from an on-line shop, Live Better with Cancer, that contained special creams to sooth burnt skin, a warming blanket for when I get shivery, and ginger sweets to refresh the taste buds and ease nausea. I first met Sue as a new born, when I took her a gift of a yellow elephant, but generally we only see her and her family when we visit my brother's, for we've never been a very close family. But this gift, totally unexpected and so thoughtful, moved me to tears, to realise how much care went into its choosing from someone I rarely see and hardly know, despite being a close relative.

Now I await radiotherapy: the calm before the storm of radiation hits my body. I continue to work, and it provides a good distraction – it requires intense thought, and I can certainly think of nothing else at those times. The cancer sites are spot on – a good job is great distraction therapy.

Wikipedia - use it or abuse it?

@Wikipedia is one site that always gets my support. It has all the world's knowledge in one place, compiled by experts in their fields, and relatively free of bias, though I am not well positioned to judge how much Western/Californian influence goes into it. It is free of advertising, which is a distinct blessing on a web more and more dominated by that menace each month. But it does require some financial support, therefore each year I make a small donation to their appeal,  Support Free Knowledge!

This is very much a case of use it or abuse it!

Tuesday, 6 November 2018

Time wasting at Addenbrookes Hospital

Yesterday, Dr Martin the oncologist at WSH, explained the pros and cons of chemotherapy, with sufficient emphasis on the cons that I had no hesitation in declining his kind offer. I told him I would opt for radiotherapy as the definitive treatment. As the oncologist in charge, he arranges the radiotherapy, but rather than doing so he encouraged me to keep the appointment at Addenbrookes to discuss it there.

Addenbrookes is 90 minutes away in heavy Cambridge traffic, so we left at 10:30 for my 12:00 appointment. The carpark was full, so we queued until enough cars had left for us to enter and find a vacant hole. Fortunately, traffic had been light so we arrived on the ward by 11:40, to find the clinics were running and hour late. Finally we were called in to see just the registrar, as Mr Turner was away. He asked if radiotherapy had been explained, and when I said I'd read the leaflet, he said there was nothing he could add to that. I only had two questions: when would it start and finish, and would I be able to go on the holiday we've booked for my birthday and New Year at the end of December. He couldn't answer either of them, and said the radiologist would have to answer these, and he'd write back to Dr Martin to make a new appointment to discuss it all.

The whole thing lasted ten minutes, and was a complete waste of time – I have lost a whole day of my life to be told nothing, and that could have been sorted yesterday. The only good thing was meeting Arthur, a volunteer in the oncology clinic, who found me a leaflet on getting holiday insurance (if we do manage to go!). He also gave me a leaflet about coming to Maggie's, a cancer drop-in centre, and a support group called Fight Bladder Cancer. It contained the line, "we know EXACTLY what you are going through...like most people, panic and fear will be a huge part of what you are experiencing." No, I am not experiencing panic or fear, and have not done so yet. What I AM experiencing is bloody anger and frustration at the lack of joined up thinking between WSH and Addenbrookes.

Radiotherapy already demands that I shall attend Addenbrookes five days a week for four weeks, plus the days round it for checkups and planning. The days left are too few to be wasted like this one  – I am already counting each one as precious, to be treasured. I don't want to spend 4–5 hours for a ten minute talk by a junior doctor to tell me nothing.

Benefits of Being Trolled

In contrast to many of my generation, through both wisdom and experience I have swung from right to left in outlook. In youth, I joined the Young Conservatives and derided the CND brigade for wanting to dismantle our most powerful defenses. Now I have rejoined Labour, and would fight for nuclear disarmament, were the youth of today marching for such issues.
Hiroshima Flag at Half Mast

In my youth I entered foolish arguments about Greenham Common women asking men to "make the sandwiches", not seeing then the wider issues of the rights of women or minorities, or even the importance of nuclear disarmament. Only now that I've visited Hiroshima, and walked in the silent contemplative Memorial Peace Garden, have I been given this Damascene vision: that whole continents such as Africa, South America and Australia/New Zealand can unite to reduce the threat of nuclear destruction. The Nuclear Non-Proliferation Treaty (NNPT) has 189 States declaring. It would be a wonderful step if France and Britain joined too, to make Europe a non-proliferation zone.  Perhaps it is too late for me to act. Death bed repentance is never very admirable, and I can't claim any virtuous result from my enlightenment.

Only through directly witnessing the distress of discriminated groups have I accepted that there is a problem, and that direct action must be taken. We hear of trolls and online abuse, of vituperate comments posted about seemingly innocent remarks, defaming the person rather than disputing the idea, and threatening violent ends to prove their arguments. But the cruelest cut of all is to be ignored. Cut off from social contact or exchange, even at the level of vile criticism, is to be as though one does not exist. In my youth, I posted as "ΔWise", signing anonymously my excruciating comments, and writing poor sketches that were pulled apart. My controversial ideas were attacked in many ways, and I delighted in the battles. Now, I can only look back at the reams of poems, the books, the plays I have written, and sigh. I would have enjoyed returning the stones of the critics and fighting more battles, but it never happened. Probably they achieved what they merited. They received no criticism, no abuse, no rebuttal. They were simply ignored, as this plea for Britain and France to join the NNPT will be ignored.  For people suffering the attention of trolls for their beliefs, their faith or their sexuality, remember: you are winning attention to your cause. To be ignored is the cruelest cut of all.

If you have visited the Hiroshima Peace Gardens,
please add your thoughts...

Monday, 5 November 2018

Kent Characters

Joyce at 90
Continuing the theme of Kent Characters, we visited Ann's cousin Joyce in Deal yesterday. She is 90, but fit enough to talk for England, and still walks to the supermarkets for food and to the pub for a drink. She has smoked all her life, and knows all the spots outside pubs and hotels where she can still puff. She defends this by relating friends she's known who were told they must stop and were dead within a few weeks. She is thin and fully mobile, and fitter and less breathless than me. She reminds me less of a Dickensian character than of one of Alan Bennett's Talking Heads but with a London accent, for she never ceases talking about her relatives, other residents, the people she meets in the shops, or her past, in a jumbled montage of reminiscences, laced with advice and humour that has us constantly laughing. I would need a tape recorder to transcribe it, and can see how Dickens had a clear advantage in recording his lives by using the shorthand he'd learnt as a journalist.

Joyce has paid for her funeral, and made all the arrangements, because she doesn't want her children squabbling over who chose what hymn or reading. She has already asked them to choose what they want from her estate, and written it down so they can't start bickering over her possessions when  she's gone. She married at 18 and has been widowed for two years. Only now does she know freedom, and is the happiest she has been.

Today was my consultation with the oncologist at the Macmillan Unit in West Suffolk. This waiting room is so different from urology, with its rows of old men with bladder and prostate problems. Here are rows of younger people, half women, many with head coverings – hats, knitted caps, bandannas, scarves – or wigs of various colours and lengths. To one side sat a younger man, a prisoner handcuffed between two guards from Highpoint top security prison, awaiting transport back to the cells. A good proportion of the chemo population are children with leukaemia, though there were none in this room; probably they have a time slot separate from the adults.

Dr Martin carefully explained the pros and cons of chemo, reading out an arm's length of side effects. My face grew longer as the list grew. Ann and Edwin could hardly stop giggling as they watched me. One side effect would be thinning of the hair. Though young, Dr Martin had a gaunt face and very sparse hair, making me wonder if he too had had chemotherapy. Then he added, the treatment would run right through Christmas, and I'd have to be admitted to hospital immediately if I ran a temperature. Even if I finished the complete course the pros were just a tiny improvement in my overall chances. As I always get a chest infection each winter I declined it.

In the cafe afterwards, a foreign lady in the queue asked what soup it was. "Soup’s all gone," said the woman behind the counter. "Oh, soupsalgone- that’s my favourite!" said the woman. We left quietly for the sane little world of Hundon.



Sunday, 4 November 2018

Bleak House II

The day continued with the weird sayings of Lee of Bleak House. He continues to rush round without a pause, taking orders for breakfast as quickly as possible, but he has no working memory, and without a written memo he kept forgetting and mixing up everyone's orders, coming back half a dozen times to remind himself of what we wanted, then bringing the wrong food in. One lady said we should just order everything, and leave what we don't want. Another guest said she didn't like to see food wasted, but the first said, with so many wrong orders, it was all being wasted anyway. Another man said he was going to buy Lee a notebook, but thought he'd forget to use it or lose it.

Yesterday, I'd said to Ann how fantastic Dickens' must have been to imagine such a vast range of iconic characters. The rest of us just write our own dull stories to greater or lesser acclaim, but he generated his stories from the wild world of his fantasy, and that made him unique. But today, I realised why he loved Kent. This county is filled with weird characters that make Lee seem tame.

The Tartar Frigate has a landlady who shouts loudly at her visitors: "Sit down! What do you want! We don't have it!" But when she brings the plates, she talks softly to them as she sets them down, "There, my beauty, you sit here," and strokes them lovingly. The hotel owner is as crooked as Bill Sykes.  He runs a jewellers in which he passed off imitation costume jewellery as solid gold, but was discovered when it turned a customer's fingers green. He sold a fake Rolex watch to someone who'd won the lottery, and that was discovered when they went swimming and the watch leaked. He seems to have got away with these crimes, but has also been charged with more violent crimes, and was found not-guilty on a murder charge. So possibly, Dickens' had no more imagination than the rest of us. All he did was describe everyday life as he walked the streets of Kent.

Paddy Ashdown joins the Bladder Cancer Brigade

I mentioned in an earlier blog that there is a dearth of famous people with bladder cancer. Now Paddy Ashdown, the ex-leader of the Lib-Dems,  has joined the ranks of the BCB. I extend my sincere sympathies, for it is not an easy group to join, and he will have a rough path to follow. He used to have a nickname, "Paddy Pantsdown", for reasons that might be libelous to state. Now we can reprise the nickname: he will be Paddy Pantsdown anew, as I can state from experience!

Saturday, 3 November 2018

Bleak House

We are staying at Bleak House in Broadstairs, after stopping via the Leather Bottle at Cobham – an ancient inn also used by Dickens, with many of his memorabilia including a strand of his hair and his chair. It features in the Pickwick Papers – but this is not a distinguishing feature, as so many pubs in England seem to share this touch of fame.
Ann outside the Leather Bottle

Bleak House was Dickens' home for many years, with rooms named after his characters.  Last time, we had Fagan, but this time we have moved upmarket with the Copperfield Bridal Suite – a glorious, large airy room with full dressing room, en-suite  bathroom with bath big enough to swim in, and a balcony overlooking the tiny harbour and the town.

On the balcony at Bleak House



Dickens' Study at Bleak House
Dickens' study – where he wrote David Copperfield, overlooking the wild North Sea and the treacherous Goodwin sands – is open to visitors, and wonderfully atmospheric, for folk who enjoy treading the nostalgic path of history. The place is run by Lee, a gaunt, wiry old man with thin round glasses and a grizzly grey beard, who sleeps in whatever room is vacant, or – as last night – the bar when the hotel is full, which he seems quite happy with. He wears a thin flowery top that makes him look as though he rushed to get up and is still in pyjamas. He appears to do everything: receptionist, porter, barman, waiter, carpark attendant, and even chef and room cleaner if other people don't turn up. One guest said, "weren't you on duty last night?" He said, "no that was my identical twin brother!"  Tonight he said, "I've only had two cigarettes today. I'll just run out to get another pack. He reminds me in appearance and manner of my brother, Peter, except that Peter would roll his own, and use his special tobacco.

Last evening, I dozed on the bed after driving down, to be woken by a shouting match. Ann had already left the room to deal with it, telling the woman her husband has cancer and was sleeping, and she did not expect staff disputes to waken the guests. This morning, the factotum came into the breakfast room with fulsome apologies, kissing Ann's hand and clasping mine, appologising for the behaviour of his manager, who had been shouting at him for some minor thing. He said he had told her before about unprofessional behaviour in the hearing of the guests. Then he brought us a first class breakfast, before having to step over his bed behind the locked bar for a pint of coke for another guest's breakfast. Kent has always been a little quirky.





Thursday, 1 November 2018

The smell of the Bug of Death

I have acquired a noticeable odour, that follows me like a sick fog. I noticed it a while ago, but now Ann has commented on it as well. Ann is a great researcher, so found that there really is a pungent chemical marker in cancer – a polyamide – and dogs can be trained to detect it. I am starting to spray regularly with an aftershave, and even spray rooms I have been in, but it makes me self-conscious. When the children come round, or I go to face-to-face meetings in London, I try not to stand too closely to the others, or breath over them. I am certainly much weaker and more tired now than even a few months ago. This is the smell of death and despair, of darkness and despondency.

Logo of the British Uro-oncology Group
Next week I meet the oncologists to determine the next step in this journey, an assessment of my suitability and fitness for chemotherapy. Dr Martin is a respected oncologist, on the Executive Committee of the British Uro-oncology Group, or BUG. Their logo is like something out of a science fiction horror movie. Clearly some wit with an unsympathetic sense of humour has added legs to the cancerous bladder/prostate image – but only six legs, so it is an insect not a spider – and looks more like an infestation than a treatment option. On reflection, perhaps it is appropriate. After all, bugs are undesirable things, in people or computers, and this disease and its treatments are certainly undesirable – like the very worst of all bugs.


Is cancer odour common? Please add your experience…