A history lesson at the carwash

Taking the car to be cleaned this morning ready for the New Year, and mine being the only car there, I was talking at length to the owner. He came from Macedonia 19 years ago, and has done well by the business. Unusually, he commutes from Cambridge where he owns a house, for prices were low 19 years ago. He employs several people, who pay £400 per month for a single room in Haverhill, but prices have risen so much even in Haverhill that he couldn't afford a house here.

He told me a little of the history of his region, and how the country had been stable under Tito when united with Yugoslavia, before the great Yugoslavian wars of disruption that ended with the country fragmenting along religious lines. He was one of five boys, but his father had earned enough to keep the whole family comfortable. Now, wages are so low each family member has to work. But he loves England, the land of opportunity, and is so well settled in Cambridge he has no desire to leave. In some way I didn't fully follow, Macedonia is not allowed to join the EU (something to do with Greece claiming it, I think).

Serbia/Croatia/Montenegro/Macedonia? The history is impossibly complicated for an outsider to comprehend, but I know from my history of Tesla (a Serb) that the Turks caused their usual mayhem, obliterating the original Serbian peoples and instilling Muslim theology into the region in the battle of Kosovo of 1389, which is still remembered. I remember an Armenian girl who told me a similar tale, of how the Turks had destroyed her people. Now, they are intent on destroying the Kurds also. How hatred perpetuates itself through the world, usually through the instigation of one wild man, unrestrained by his people.

On the domestic front, the cancer continues to make its presence known. The bladder is sore, PU'ing is difficult and painful, and dipstick testing confirms the presence of blood, protein and leucocytes, probably all a result of the vicious inflammation induced by the DXT. I continue to feel nausea, with reduced appetite, and have lost weight. Only three more treatment days, thankfully!

Death is in the air

Dead Flowers to mark the solstice

Yesterday, 21/22 December 2018, was the turning of the year, usually marked in our family with a small celebration. I always believe, marking as it does the ending of the year, that the winter solstice be of greater importance than its summer cousin. And believe me, 2018 has been a right bad year. So, despite knowing Ann always thinks of cut flowers as 'dead things' (see: pacifying-pilot), today I bought a bouquet to celebrate the death of the year, complete with Lilies-of-the Valley, white roses, and gypsophila to mark the passing of the year. I told Ann, "I know you don't like dead things, but I've bought you some flowers," and explained their symbolism in this case, but she didn't seem to believe me, saying "Only you could buy me something I don't like!"

It really has been a stunningly bad year for so many of us. Now we hear the announcement that Paddy Ashdown has died from bladder cancer. It was only one month ago that I wrote to welcome him to the BCB (Bladder Cancer Brigade, see: paddy-ashdown-joins-BCB). He was one year older than me, but he must have had stage 4 - that's the stage where they just say, "go home and keep warm."

Yesterday, too, Ann's friend Sylvia fell and damaged her wrist sufficiently for me to agree she should get it X-rayed and may need to visit A and E over Christmas! Her son-in-law is now so ill and debilitated with pain from the cancer of his face and DXT that he is wishing he were dead. Now, to add to catastrophe, comes in the report of a tsunami in Indonesia with hundreds dead. Another poor Christmas for so many.

Friendship

We are suffering here

while other lives go on,

we welcome not New Year

to pin our hopes upon,

instead, we live each day,

with friends we hold most dear

who offer their support

to share this pain we bear.

 Annie Elliott

This year has almost seen the death of Brexit as well. A satisfying article by Julie-Burchill in The Telegraph today, "Not even a Christmas miracle can save the sanctimonious, obsolete and Orwellian BBC". So many of us who voted 'out' are derided by the powers that be as intellectually lacking. The great campaign of fear that drove the remainers was one of the convincing arguments for me voting for Brexit. I hate being told what to do, and the more people try to scare me into something, the more I wish to rebel and oppose. To be coerced into remaining in Europe is the opposite of freedom - we heard not one word of all that is good in unity; there was no plea to higher causes or to the harmony of peaceful coexistence, or the sharing of historical ideals. If I had pleaded the Brixit cause, it would have gone very differently. Thank you Julie-Burchill.

Please add any comments if 2018 has been bad for you too

Mail to: Grandad.John@2from.com

Laughing at Bladder Cancer

Down to London this morning for a business meeting. London was its usual hectic self. I certainly felt much more energised than I have for some time. I suspect my tiredness has a strong psychological component, but Ann has an easier explanation: in London, you have to keep moving or you get mugged.

On the tube, and in the inevitable breaks in these meetings, I started reading a book Ann bought me when first I got my bladder cancer: The Funny Thing About Bladder Cancer by Guy Wheatley He certainly captures the positive side of what we go through, from the first finding of blood and the first cystoscopy through the drama of despair and hope as treatments progress. I envy his style - I'd love to have so much humour about it all. But he wrote the book some years after the first diagnosis, so hopefully he's looking from the perspective of being clear. My perspective is looking at a great pit, and I'm still waiting to be able to turn round and look back at it. Interestingly, I always thought the big advantage of private medicine was the speed of diagnosis and treatment, but Wheatley had huge delays despite having private medical insurance. He owed debts to the insurance company for some previous treatments that hadn't been wholly covered, so they called in a debt collector and refused to pay out anymore – even for his cancer investigations – until he'd paid off the debts. 

Ann is the archteacher of business meetings. When I started, I was abrasive, interupting people with my opinions, certain I was right, I generally didn't stay at those jobs for long. Now, I generally keep silent, answering questions if asked. I still think I am right, but I try to keep my opinions to myself. It's funny how little managment want to know about what's wrong with their system. I could offer them a one man Deloitte or McKinsey business consultancy and save them a fortune.

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.

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

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!

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…