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

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!

by Annie Elliott

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!

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".

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!

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...