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…

Hair and care

Edwin asked us to get him a hair shampoo when we went shopping this afternoon, one for greasy hair. It is a mark of how little shopping I do that I  had never realised how many types of shampoo are on the market. The racks were solid with them – shampoos for dry hair, long hair, fine hair, delicate hair, young hair, blonde hair, even for "old hair", whatever that is. But no shampoo for greasy hair. I think the marketing people now sell it as special shampoo for full-bodied hair, or glowing hair. I was thankful that one advantage of chemotherapy might be that I won't need to worry about shampoos again; also, I am going to save a fortune if I never again need to visit a hairdressers.

On the way to Clare, we passed a car in a field. It had clearly spun off the road on a bend, hit a tree and spun at speed across the ditch and through the thin hedging. Ann said, "there's still someone in the car," so we turned back to check. Sure enough, a young but unharmed man leapt from the car to wave to us not to stop, saying he was fine and just awaiting the breakdown truck, and clearly embarrassed to be caught there.

On the way back, we stopped at The Globe, a really fine unspoiled pub with no modernising features and a wide selection of single malts. Sipping my double Dalwhinnie at a quiet table in the corner, we heard an almighty crash, and a man was lying on the floor, having fallen off his stool at the bar. A group of people rushed round him and helped him to his feet. He lost his beer, so just took a small wine and moved to sit in a proper seat near our table when he suddenly fell again, very hard on the solid tiled floor. Again, people crowded round until Ann said I was a doctor, when they all melted away and left him to Ann and me. I checked him over; he had broken nothing, but was in great pain from the fall, so we helped him to the chair.

He wasn't drunk, but told us he was under great stress because his wife has mental illness and he can't get any help. He has to do everything, and just tries to get out for a break now and then. There was no way he could drive home, so we took him back. His wife was still in night attire, telling us she'd been ill, so we led him to his armchair to sit down and recover. The incident certainly reminded me how lucky Ann and I are to have the support of each other, and put into proportion the minor inconvenience of choosing shampoos and possibly losing my own hair.

Pacifying Pilot

Ann is difficult to buy presents for. She doesn't like chocolates, or expensive jewelry, and likes to pick her own clothes. Especially with the inconsistent sizing between shops, she prefers to try on garments rather than trusting to others or the internet, then having to return them. She isn't even certain about flowers – cut flowers are like having "dead things" in the house and are better in the field – but she is gracious enough when given them, and displays them nicely in a cut-glass vase.

Yesterday was a busy day. It was Edwin's birthday, with Lucy, Matthew, MA and their families coming to see him all afternoon. Ann had a hospital  appointment in the morning for further X-rays to her hands, so we had to tidy up early. I hoovered and took out the old dead flowers, while she started to prepare the food. At the hospital, I waited in the restaurant over a cup of coffee. Back at the car, Ann said, "what's that blood on your face?" I looked in the car mirror to see two huge glowing red globs on my face, and a deep yellow stain across my cheek and in half my beard. I rubbed them off, but the stain wouldn't move - it was as though I'd dyed my beard bright yellow. We finally worked out that they had come off the flowers when I threw them out - they must have brushed my face and stained it.

Pacifying Pilot, the wild guinea pig.

The party went well, though I was still tired, and sat in my chair most of the afternoon. Lucy and Andy have a new baby, now one year old and toddling, so we shut the dogs in the bedroom so they wouldn't knock him over. Little Theo still has his dummy, and likes to play "hunt the dummy", leaving it in as many unexpected places as he can find. Today he decided to share it with the guinea pig! Pilot was not amused when he realized it wasn't food, throwing us a most accusing look, but Theo thought it very funny.

Conspiracy theory

I do like a good conspiracy theory. I have a new one. It is about the USA Miami bomb maker. Cesar Sayoc appears to have been a loser of low intellect who attacked his granny, was thrown out of their house by his parents, and was living in a white van plastered with Trump posters. Yet somehow, he assembled the components for more than a dozen pipe bombs without attracting attention, discovered the names and addresses of leading critics of Trump, and mailed them to their targets without arousing any suspicion.

Surely this guy must have had vital support at every phase by someone as yet unknown. But not one of the bombs exploded, and the suspect left a fingerprint that drew the FBI to him within a day. Of note was Trump's initial comment on the situation, asserting that the media was in part to blame for the attempted attacks, and that their false news had turned the opinion polls against the republicans before the forthcoming mid-term elections.

A good conspiracy theory needs good suspects, and there is certainly no shortage of these. Let's see - who would want to damage Trump's presidency?

1. All the Democrats
2. The FBI
3. Half the electorate
4. Feminists
5. Every LGBTI person who every attended a pride parade
6. Many Republicans
7. All the ex-presidents he has slimed 
8. Ex-candidate Hilary Clinton
9. The whole of the liberal press
10. All the people he has sacked during his presidency
11. Trump himself

I am not American, and it is impolite for an Englishman to criticize the leader of another state (usually we're too busy criticizing our own government). But Trump does give the impression that the consequences of his words are not always considered with great depth. It is just possible that he might have thought verbal attacks on his critics were insufficiently effective. I can imagine him thinking, "Heck, I keep telling everyone what creeps these guys are, but they keep on telling their lies about me. It's time for real action!" He might then order that they be silenced by direct action? Possibly it was only the clandestine intervention of someone with any common sense in this plot that ensured the bombs were harmless, thus saving many lives. But perhaps the team he sent were as incompetent as he is, and that too was another cock-up? This conspiracy theory can run and run.

Dealing with severe invasive bladder cancer

After yesterday's euphoria on being told that radical bladder surgery is probably no more effective than radiotherapy, today I am beginning to take in the significance of all that lies ahead. Yesterday, I felt back to normal and full of energy; I thought my tiredness and general lethargy might have been psychological from the stress of knowing I have cancer. But today they are returning, and must in large part be the result of a vicious malignancy fighting within me, making me anaemic and run down.

Operation

Softly,
operate softly,
gently move
towards aged limbs,
move instruments
with tenderness,
reach soul
with loving touch
bring him back,
that we can hold him near
he is our world,
please hold him dear.

by Annie Elliott

Addenbrookes is a major treatment centre, and gave us a video to take home to help understand the road ahead. It is very lengthy, like the journey itself, but very thorough, so Ann and I are wading through the more relevant sections, such as the tests that are done, the choices to be made, and the pitfalls of each modality. At the moment I am skipping over the many sections on cystectomy in all its lurid variations, and concentrating on chemo and radiotherapy. They are enough to cope with at present.

A few famous people have bladder cancer, but mostly it is a disease of the poor and the unknown. The video gives pros and cons fairly, but the patients are survivors who seem to have had minimum problems and came through smiling. I am a cynic, always examining the other side of each lemma. Wearing my sceptical hat, I know those with fatal outcomes were not interviewed. I wonder – where are the patients who vomited violently and couldn't stomach chemo? Where are they who suffered irreversible radiation burns to the bladder? Yes - this is the worst side of pessimism. Partly it's my normal way of looking at the world, but perhaps too it reflects my deeper fear of what is to come and what can go wrong.

My blog posts are very subjective, and certainly no one should read them who wants an upbeat or optimistic view of bladder cancer. For anyone wanting facts, go to the official sites and read the positives, which are very real. Ann has certainly found some good sites online for advice. Fight bladder cancer and Macmillan Bladder Cancer Support pages are excellent, and I still have fondness for my original ones at Addenbrookes Urology Unit and The NHS Bladder Cancer Site.

The Doom Lifts

Doom Day. It is dark and raining. The road to Cambridge is closed by a “police incident” so we take the back roads – normally deserted, but now following a long slow caravan of diverted traffic. We sit in silence. Edwin sings some modern song in a low voice. Ann sits quietly without speaking. We wait in Addenbrookes' coffee lounge until the appointment at nine. The talk wanders over what might be said, what the future might bring. I am resigned to having a radical cystectomy, and life with a bag clinging to my side like an unwelcome leech. I say I do not want to die, so will probably opt to follow the consultant's advice, taking the discomfort and pain to come.

The waiting room is divided in two by a trellis, with a sign by the opening clearly saying, "Clinic 12 on this side". A large woman keeps trying to go through, insisting to her husband he should be that side, while he refuses to follow her and the receptionist keeps insisting, "your clinic is this side." She must be deaf as well as blind; but perhaps, like us, she is distracted by the severity of her husband's disease.

Mr Turner, the principal urology team surgeon,  is a solemn man whose eye never wavers from me. He explains with great  detail the situation, and outlines the possible road map ahead, and I appreciate his directness. Then his message begins to get home. The cystectomy is not the first choice; indeed, he emphasizes that the odds are equally balanced between radical cystectomy and radiotherapy, giving me the choice. Either will follow a bout of chemotherapy, which will be done by the oncologists at Bury. My chances either way will be about 50:50, which are considerably better odds than a diagnosis of terminal cancer, and would be very good odds  in a horse race, well worth a punt.

Coming out, I feel I have been granted a reprieve. The rain has stopped and the clouds are lifting. On the pavement, we overhear a conversation by a man with a wide grin, "They say I don't have cancer!" and his friends and rels cheer and laugh with him. Edwin says, "Mum, if you hold him, do you think we can break his arm?" Ann replies, "No. I'll break it on my own!"

By the time we're home, the sun is shining and the skies are blue. I had lived in dread of radical life-changing major operations. These other treatments I can face as they come, and the side effects should not last for ever. Now we can begin to live again and enjoy cracking the wild walnuts I collected from the tree in Clare.

Clare walnuts

D-Day minus one

Yet more harbingers of doom as I count down to my surgical fate. Lying in the centre of the road was a dead cat. The Times today carries a pull-out supplement on Modern Cancer Therapies. And  suddenly we have to quit our unit in Clare Antiques Warehouse.

Contemplating what is to go

For many years we have had the unit: just a small modest affair, but it took us to auctions and car boot sales, and was hugely enjoyable. I was amazed to discover a world of Uranium glassware, ancient oak English furniture, or Victorian paintings and Silhouettes. My own favourite subject was the books, researching their dates and authors often unknown (to me) who had produced them, then pricing them. We had some beauties, including one lot of some 300 books from the estate of one elderly spinster, Jane Hunt. She had built the collection over her lifetime, and often visited the literary places described, keeping letters or postcards, or Times reviews or obituaries about the authors, or penciled marginalia, till I was able to build up a full and fascinating biography of her life. Many of her books I read myself, and would never have met them but for her. One collection I bought at auction was a full hardback set of first edition Terry Pratchetts, several of them signed. I kept those, and read some I hadn't seen before. But with all this looming we decided to quit the trade.

First thing this morning, we had a phone call saying someone wanted to take over our unit, so our stuff would be moved into another less favourable space. Then, within a few hours, we were told someone else decided they wanted a unit too, and we would have to get out by the end of next week, as the owner is slowly converting the place into accommodation, so many fewer units are now available. The one bright hope is that, knowing I face doom-day, the wonderful person who manages the place has promised to help move some stock into empty places, and find someone else to shift all the bookcases and books. I wonder if the Macmillan Trust would like to take everything?
Even Ann's new poem carries the melancholy of the days.

Ending

I know I must give you up
yield you to the mother earth
where once you sprang
with such enthused breath
to sing your sweet and merry song.
My heart sinks stone-like
in an everlasting pool
at the sombre, cruel hand
that points to losing you.

by Annie Elliott