Tuesday 30 October 2018

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.

Monday 29 October 2018

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.


Sunday 28 October 2018

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.






Saturday 27 October 2018

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.
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.

Friday 26 October 2018

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.

Wednesday 24 October 2018

D-Day minus two

Doom Day minus two. In Hundon, it is half-term, so MA and her family are away at the seaside, enjoying the last of the late summer. Ann has volunteered to look after her many animals, including the dogs. They are strong and lively, too much so to manage alone, so we walk them in pairs. 

Once things go wrong, they seem to keep going wrong. If I believed in omens, another one was thrown at me today. It took the shape of a paper I submitted to a physics journal about six weeks ago. I hadn't heard from them, so went on the site again today to check its progress. The paper had completely disappeared - no trace of it, and no record of having received it or of its rejection. All I could do was resubmit and hope it makes some progress through the system.

I get very tired now. We go to town, looking for winter jerseys for Ann, but I have to wait for her over a coffee in Waterstones. Visiting a bookshop was always a joy, to browse new titles and choose something unexpected almost at random. Today the excitement is gone, as I drift among the sections. Even Terry Pratchett fails to appeal - usually certain to provide a relaxing read. This cloud is depressing me before I even have the op or the treatments. Not a good omen for what is yet to come.

Ann says I can get some Viagra once I've recovered. I say I'd be embarrased to ask for it in Clare, I'd have to go to somewhere I won't be known. Ann says I can go disguised as a Mexican, with a huge moustache covering my face, and call myself Poncho Villa, but I'd probably forget and say "I'm Aston Villa".

Tuesday 23 October 2018

Dreams of death

This is a morbid post. I dreamt last night of space ships, taking us to a room on a distant world. Pipes began to ooze water, and thick Kawasaki-green sludge that filled the room, then the planet and all of space between. The others were struggling to return to Earth, and blaming me for taking them there, then left me to drown in slime, alone and immovable as they returned home.

Today the summons came to attend the urology clinic at Addenbrookes, so on Friday I face Mr William Turner, a specialist in Reconstructive Urology at the Aggressive Bladder Cancer Unit. Their site blurb informs us: "Muscle invasive bladder cancer — because of the high risk that the cancer will spread from the bladder to other organs, the treatment for muscle invasive bladder cancer is often more intensive. It may include chemotherapy, surgery to remove the bladder and other organs, and radiotherapy." Then, to make sure the message gets home, "The outlook for people with muscle-invasive bladder cancer is not good....a complete cure is not often possible. Around half of people diagnosed with muscle-invasive bladder cancer will die within five years."

I suppose, on the optimistic side, this means my odds of being here in five years are 50:50, which is better than zero, but at what cost? Having seen it close to from the surgeon's side of the OR table, I dread the idea of radical cystectomy. Now I do wish there were people I could talk to who've been through it, and learn about it from the patient's side of the table.

Once, to dream of space ships was to dream of adventure and excitement. But then I was young, and those dreams, like the patients, are long gone. Despite the care and love of a supportive family, I feel quite alone as I wallow in these dark thoughts.

Monday 22 October 2018

Ancient apples


The Nuttery is a mysterious ancient woodland above Clare, beyond the Swan. It's a wonderful place to walk the dogs. Once, in days when rectors had vast houses, servants and land to support them, it was private ground providing walnuts and hazelnuts, and fish from its pond for the rectory. Now it is overgrown common woodland, part of the network of public walks here. For Edwin, it is a gentle stroll up through the fields, but for me a breathless climb and I am glad to pause in the silence. It is cold out of the sun, and glades with log seats beckon. Strange figures carved in dead tree trunks lurk in the undergrowth. 
The Nuttery

A huge old apple tree, hidden from bygone days, hangs with glistening fruit beyond reach, but I pick a glowing red ember from among the recent windfalls, one fit to tempt Snow White. It is the sweetest, most succulent apple I ever tasted, veined with thin red streaks I’ve never seen before in any variety. It is cold from the overnight air, sweet and soft as candyfloss, quite unlike brands that boast "hard, crisp and crunchy". Even the skin was soft and could be eaten without wedging in the teeth. Perhaps it is one of those long-lost varieties that supermarkets reject. Back at the Swan, ripe walnuts have fallen on the car, remnants perhaps of that ancient wood.

Beneath the tranquility lie thoughts of what is to come. I have received a copy of the medical summary. There is little that was not discussed, but confirmation of a G3 pT2 TCC, i.e. an aggresive Grade 3 transitional cell carcinoma that has spread into the muscular wall of the bladder, grotesque and unnatural as terrible carvings in the deadwood. A large pelvic lymph node may indicate wider dissemination. Today is the Specialist Multi Disciplinary Team, or SMDT, meeting at Addenbrookes to determine management, and my fate. I await their call.




Sunday 21 October 2018

The downsides of being a man?

Catlin Moran, a well-known feminist writer, has devoted her life to women's causes. In The Times Magazine today, she argues for equality in popular terms for yearning and sexuality, listing a whole thesaurus for men's arousal, and comparing it with the only word she could muster for women's desires: moist. She describes "moist" as the worst word in the lexicon, although I have always considered "damp" or "wet" to be worse words - I'd rather be moist than damp or wet. She concludes by calling for new terms for female arousal, to redress the balance in the name of equality.

Now she asks on her Twitter feed, "What are the downsides of being a man?" I feel compelled to answer, but can think of no great problems I suffered in youth from my gender, so perhaps the question was rhetorical, or ironic. If I suffered at all, the problems were from my class – an old-fashioned word, but one meaning a working class background with basic education, low in expectation or encouragement. Most in my school left at 16 to work in factories, with no thought of university or even career jobs. A good apprenticeship was an aspiration. The sixth form was a runt class, and the few of us who left for higher education knew that Oxbridge was closed to comprehensive school boys with Midlands accents. I was fortunate indeed to be selected into St Thomas' Hospital.

St Thomas' medical school was filled with the public-school sons of consultants (but was considered less exclusive than Barts, which was rumoured to only select the sons of Barts consultants). There was a quota of women, but only to fill the legal minimum, and they from Roedean, Cheltenham Ladies College, and their ilk. I was the first and only working class entrant, possibly selected to fill another political quota. The teaching was world class, but I felt an outcast.

That early prejudice is well past. Now I feel the prejudice of the young against the old. TV programmes show active, virile people, chasing adventure, or idly flirting. Even the adverts aimed at we oldies – for funeral plans, care homes, stair lifts, or equity release – have actors in their 50's who look a fit generation away from me. In shops, people are annoyed with geriatrics who fumble for their money or can't work the card readers, and assistants look at me pityingly, thinking I should be in a care home, and turn to talk past me to someone more interesting even as they scan my items.

Only now am I aware of even mild prejudice against males. I am still working, but only in a consultant role, and most of the people I work amongst are young women, and the bosses are all women, and there is no danger that they are ever going to proposition me. There is, though, a sense that the selection process is unconsciously biased, and women will be given preferential treatment – but that is more likely to be my own opinion than fact. Also, as a man, I am aware that I tend to push my opinions with a strident voice, so make myself hold back, a repressed role that is forced upon me. There is an awareness that to be a white male, and especially an oldie white male, is to be placed behind the line of women, minorities, the disadvantaged, the LGBT community and people of colour.

I hope I have these terms right - they seem to change every few years, and all the other downsides of being a man will be as empty air compared to the wrath of these groups if I mislabel them. For that is the greatest downside of all: the virulence of complaint if we men step beyond the narrow lines they prescribe for us.




Saturday 20 October 2018

A lesson in cosmology

In cosmology, it is usual to talk of three types of universe. They are hard to envisage, because they are all three-dimensional and change with time, so it is is generally easier to hold a two-dimensional picture in one's mind, and leave the third and time dimensions to the mathematicians. The three are: ones that are flat, like a sheet of paper; ones with positive curvature, like a globe; and these with negative curvature, often likened to a saddle shape, curving in two opposite directions. Time is then "pictured" by thinking of the shapes as elastic, then being pulled equally in all directions so that if we draw little galaxies on them they will begin to move apart.

Visualizing the mysterious open Universe
What force pulls them apart? I said it was hard to imagine – indeed the force that started it all is itself described as "unimaginable" in all its attributes; vanishing smallness, infinite temperature, infinite density, and a time so small it is thought that no other time can ever be shorter. Cosmologists sum it up as the Big-Bang, though only the Universe itself could have heard it. Now imagine all that going on in three-dimensions, and the mind's eye fails. It really is easier to think of it as a great saucer carried by elephants. And how many people even handle saddles these days?

Not dead yet
We have walked the graveyard,
touched the tombstones
felt the putrid air of death
wept at the nameless wreath.
Today, we have rejoined life,
drank the sweet red wine,
eaten of the forbidden fruit
breathed the spring like autumn air,
it is our world
and we are still here.
by Annie Elliott

We may as well describe the open universe as the contrary curves of a woman's waist, usually hidden from view, everywhere quite mysterious, yet smooth and continuous. Ann is my Universe. Just don't describe the galaxies as wrinkles on the surface of time, moving apart as the curves expand, or you'll get into serious trouble!

Friday 19 October 2018

The analysis of emotions

I am a scientist first, and a poor poet and writer second, though many reviewers rejecting my papers might say I'm a poor scientist first. Be that as it may, I do try to analyse my emotions.

The main one is rage. Rage at having life torn from me, and feeling weak and tired. Rage at thinking of the time I will loose from all the nasty treatments yet to come. I have always bottled up emotions, as trained to do. My background was the "stiff upper lip". Don't show your feelings. Put on a brave face. Face the world with head high, chin out, back straight, stomach in, chest out, shoulders back, look the person straight in the eye, give a firm handshake, and remember "you're British". Now I find myself swearing, raging against fate and the world, angry with my stupid body that's slowly falling apart. But thus far, it is bottled in, and I rage silently, in the darkness of my own mind.

A second one is resentment and envy. I see young people, and envy them their healthy skin, their strong limbs, their tireless energy. I yearn to be young again - and fully understand writers – such as Shaw with Back to Methusala – who imagine an elixir of eternal youth. I remember in youth I could run and climb, swim a mile, and had breath for two lengths underwater. Now I get tired walking the dog.

Pity or depression have not come, and Ann – bravely strong and wanting to keep busy to block her mind – only cried briefly on first hearing the news.  But today came a memory of the forlorn look and despair on my father's face when my mother died, and I was suddenly overwhelmed with a thought of Ann, and the grief and despair to come.  For the first time I wept today. I know her so well, I feel already her suffering and the pain she has yet to bear, and I wept for her future sorrow. But the tears were silent, and came when I was alone.

I do not write poetry now. Ann and Edwin's poetry far eclipses mine. Edwin's are introspective, exploring his own rages and frustrations. Ann's sum up the universal humanity we share in suffering or joy. She writes everyday. Here, a couple of new ones:
marriage
We are a couple,
two people sharing
a caring
simple life
which others join a while
then disappear from sight,
while we, the two who strive
to live and to survive
must face our world together
through the bleak and  cruel weather
side by precious side.

biopsy
Tummy turning 
like a wheel 
hit by a whirlwind, 
rushing, screeching 
twisting over and over, 
just waiting, 
tick tick tock, 
then the clock 
is silent.



Thursday 18 October 2018

Post Graduation

Yesterday was Edwin's post-graduation ceremony. The omen's were strange. Walking past the Corn Exchange, we passed a foundation stone inscribed, "John Death laid this stone." In his gown and robes, we went with Edwin for a coffee before the ceremony. A woman on her own, but dressed in the blue and gold robes of Edwin's university, followed us into the arcade, then caught up with me. "Is this the way to the Corn Exchange?" she asked to my surprise, for she must have been studying in Cambridge for at least three years, and had walked past it to follow us.

Ann mentioned that her bag was very heavy, because she was carrying water and a folding walking stick in case I needed them. I commented that she'd have to fit a folding wheelchair in when the time came, but she wasn't amused.

At dinner in The Ivy afterwards, I kept looking at a strange optical illusion: a reflection of the back of a man with a black hat. He was like a ghost figure that people walked in front of, behind, and through. I got up to find the cause of the reflection; it was of a picture on the far wall. Then in an alcove I stared at a couple carrying gender equality to a new level. They were identically dressed in black suits, and homburgs that they didn't remove all evening, like a pair of Jehovah's witnesses matching a front view of the ghost image.
  
The ratio of women to men entering medicine is close to 60:40, and is probably similar in veterinary medicine. The biochemistry ratio seems higher, and in the Arts, Law and Social Sciences Faculty it runs at up to 4:1 on some courses. It does begin to seem like the feminist battle has been won, and now they're just mopping up minor pockets of resistance. 

News item in The Times: Feminists object to the name "Gentleman's Relish".

Story in The Telegraph: After more than sixty years Kleenex is phasing out the Mansize tissues name, deciding instead to call the disposable handkerchiefs "Extra Large" tissues following complaints by active feminists.

Next to fall will be ladies fingers; we should just call it okra. At this rate, all differences will be eliminated, and we will wear identiclothes. There will be no more gentlemen's outfitters, or ladies fashions, just clothes shops; and women's magazines and those glossies promoting male bodybuilding must merge on the alter of true equality.


Wednesday 17 October 2018

On advertising

I am thrilled with my new Apple i-phone. I don't like to say it too loudly, because Edwin has been pushing me to get one for years and I don't want him to think he is right too soon. It is fast, clean, and I love the facial recognition feature to unlock it. True, its keyboard lacks the row of numbers above the alphabet, but this is a minor inconvenience. Interestingly, 67% of views for this blog are from Apple devices (with 52% the i-phone); 20% are Android; only 10% are viewed from Windows.
But the main virtue of the i-phone is it doesn't support intrusive advertising.

Google will not like this post, but - I hate advertising. I don't like it on TV, though it would be hypocritical to say I only watch BBC. I don't like it when I do searches, but accept it as the price of good content and for ease of searching. My favourite site is Wikipedia; I would gladly pay a yearly rental for that site, and I send them money each year when they put their appeal out. But where advertising really cheesed me off was on my Galaxy phone.

Even before it exploded in my pocket, I was fed up with it to the point where I wanted to throw it at the dealers who sold it me. It was not a free phone. I paid good money for it, through the rental contract with EE, and a large fee every month to rent their system for calls and data. I therefore expect a clean service; but instead, I kept getting adverts thrown in my face. Full page adverts! Covering the screen after I picked it up and started to text or dial! Adverts that insisted I wait a few seconds, with a countdown before I can clear them! Adverts about irrelevant rubbish that I can't even read because I am so mad with them!! I do not expect to pay for the privilege of getting adverts!!!

Ann says I should write about my "feelings", and not keep making jokes and pretending all is well. It is not easy. I have never delved far into the dark pit of emotions. She keeps feeling shudders of shock as the news hits her in waves; I seem to have put it from my mind, and don't like to dwell on it. I suppose if anything, my emotions are of anger and apprehension - I resent having a black curtain hung before me through which I must pass. I enjoy life, and had hoped for a few more good years - there are so many things I still wish to do.
The apprehension arises from the thought of the cystectomy. I spent 6 months as surgical houseman on a GU unit. As a houseman, we didn't do much important stuff - just assisting the surgeon by holding retractors while the nurses wiped his brow. But I did see the severity of the ops, and the attempts to fashion a piece of bowel into a false bladder draing to a bag on the abdominal wall. I witnessed the failures too, where the bowel became infected, or did not graft, and needed another urgent procedure. Also, the cases of the poor men (were they always men?) with aggresive cancers, too late to halt, racing through their bodies to claim the ultimate victory.

I don't suppose my feelings will help anyone else much, but the Macmillan cancer site offers brillient support, and is Ann's first port of call when she has questions. So if anyone reading this wants to bring me their feelings, at least I'll be happy to share them, and maybe they will resonate with my own feelings and help me better to express them.


Tuesday 16 October 2018

Clearing up the mess

I am always surprised at how difficult women find it to load a dishwasher. Each time my wife tries to do it, I find myself having to reload the thing. The problem is, I believe they have no spatial awareness. Dishes are pressed against each other and come out half unwashed; cups are piled higgledy piggley, and won't fit together properly in neat rows; glasses are not proped up and topple over, so come out full of dirty water; forks are placed in tine downwards, so they stop the bottom rotator doing its job; and huge items are placed vertically to stop the top rotator from turning.
Worse still, they don't get the concept of initial rinsing to remove loose pieces, which end up coating the glasses so they have an unwanted coating of crud. I don't know what prevents them from learning, but Ann is sensible and says, "well you do it then!"   Ben says his partner is exactly the same; he has to do it every time, as she refuses to touch it anymore.

Today was crunch time with my urologist, Mr Sengupta. He is a good, serious, surgeon with a firm handshake, who speaks with clarity and looks me in the eye. The news was not good, but he had a box of tissues ready which he passed to Ann. It is stage 3, having passed through the bladder wall, with evidence of possible metastasis to a pelvic gland. I have had lighted candles, prayer meetings, and even a mass said for me! If this were a scientific experiment, I would have to say it has failed to reach statistical significance. However, it has demonstrated what a large group of  people care, and that surely gives strength and hope, even if no physical cure.

The Addenbrooke's team will meet on Monday to decide my fate: some combination of radical cystectomy, chemo and radio therapy, or possibly some experimental treatment, which they are always keen to try out at there. I will be happy to accept their advice to clear up this mess.

Ann is a rock. The last time she was passed tissues was 25 years ago, in the same hospital, when we were given news that the scan for her pregnancy showed an empty sac. But she rose above that to produce an Edwin, weighing in at 13 pounds, and with an Apgar of 10 even after the Caesarian Section. Mr Sengupta asked if she would like to take the box, but she was strong enough to control her distress.

Yesterday, Mike phoned. I have always been proud of a good head of hair. My children used to take it as a sign for a healthy genetic inheritance, but some of them are already getting a bit thin on top. When told I might need chemo, Mike said I'll end up looking like him. I had a haircut yesterday too; I could have saved the money.


Monday 15 October 2018

I am now a BLFJ

One teacher at my medical school at St Thomas' Hospital taught that the only difference between a man and a woman was a -CH3 group and a double bond, but he was a biochemistry teacher. The physiology department was more finely nuanced and taught six distinguishing features for sex determination and sexual differentiation.

  1. Genetic sex. Usually a clear distinction with XX or XY. Rarely, specific mutations (XXY, XXX etc.), or hybrid and mosaic types are seen.
  2. Anatomical sex. Usually distinct, although hermaphroditism, hypo-genitalia, or developmental anomalies might confuse the external appearance.
  3. Hormonal sex. Do you have functional ova or testes? What is the balance between your circulating hormones at puberty: oestrogen or testosterone biased?
  4. Parental nurturing. A more fluid definition, based on parental choices, culture and expectation. What was your given name? Were you clothed in dress or trousers? Did your relatives colour preference include blue or pink? What selection of "suitable" toys did you get? Do friends see you and treat you as male or female? 
  5. Sexual orientation. Are you attracted to males or females? Here, gender fluidity begins to creep in, and bisexual or homosexual preferences may emerge. 
  6. Sexual self identification. The last of the list, yet psychologically the most important. Does the person think they are in the "wrong" body? Despite the strength and persistence of the first five types, do they desperately yearn to be the opposite of them all?
People answering yes to the last of these may be desperately unhappy in their lives, and wish above all else to assume their preferred identity. Changing clothes and name is the easy part; harder is to insist on hormonal and surgical treatments to bring (2) and (3) into alignment.

On this basis, the current trend to make self-identification a sufficient qualification is to trivialize a traumatic state of being. It will deny proper recognition and treatment for people trapped in the "wrong" body, and if allowed, will enable any peeping Tom to self-identify as female for the dubious and abusive desire to enter women's changing and shower areas with impunity. On the basis of self-identification, I can claim to identify as a black, lesbian, female jew, and claim the right of all BLFJ's to protection by anti-discrimination laws and proper recognition by society as a worthy minority.

Sunday 14 October 2018

On entertaining

We went to a concert by Paulo Lopes and Peter Wild yesterday, with celloist Eugénie Dagan and Edwin as narrator, to a packed hall in Stoke by Clare. The first half was a selection from composers rarely heard today, including Cécile Chaminade who wrote over a thousand pieces, and was widely acclaimed in the late 19th/early 20th centuries. We hear so many complaints that women were pushed out of science and the arts by men; but even when there is a great composer like Chaminade, she seems to be pushed aside, and even today it takes a Paulo to make her known. The second half was Saint-Saëns. Both Peter and Paulo are incredible pianists, and the music of their thundering keys from the finale parade of the Carnaval des Animaux reverberated through my dreams all night. Paulo not only arranges the program and performs, he also cooks and serves the food for the interval (a choice of chili con carne or chili beans, rice and salad), and does all the organization. They're doing it again today with a young dancing troupe from Clare's school of dance.

By chance, we were seated next to the ex landlady of the hotel in Clare. She ran it for over two years, then left in the summer. She said it was growing too hard to make a living from it. With Brexit looming, prices of imported foods and foreign beers are already increasing. Also, with fewer Europeans coming over, it was getting harder to recruit staff, and wages were going up, and it was hard to pass these costs on to customers. The public were also much harder to please now, complained more often and refusing to pay for meals, and stealing more and more items. One of her off-duty staff was eating there and heard a large table next to him plotting how they would get their mains free, and only have to pay for the desserts. So she has now given up the hotel, and is unsure if she will go back into catering.

Friday 12 October 2018

A child of my age

Ann says my blog is of my age, revealing me as a child of the 40's to anyone reading it. Well, yes - I was born in the blackouts and played as a child among the bombed ruins of Leicester and Coventry. I played in the street, walked alone across the fields to primary school from age 5, and my early memories are of austerity and rationing, but it all seemed normal then. We are each a child of our age, and must build on the past as best we may.

I have been reading Mary Renault The Praise Singer for the last two weeks. It is ideal escape literature, and easy reading, but I am a slow reader with many distractions. I loved her literature when I was young, and read her avidly in the 50's and 60's. The Praise Singer tells of an ancient Greek musician. It was published in 1978, soon before her death, and passed me by. She was all woman, and lesbian before it became a fashion. Now she is published by Virago Classics, but is an unlikely icon for feminism. She doesn't write of women's issues, or even of female heroes. Per contra, her women are slaves, ill-treated wives, or hetairas. And of men, she writes with understanding: "He was learning more about the management of his javelin than he'd ever known...." "Well it is all gone by. Aphrodite herself could not raise my old spear now." Simonides is definitely of my age.

Today came the summons to attend hospital again next week to meet the mighty Mr Sengupta, perhaps to reveal the cancer's stage and discuss best treatments. Now I must build what is left as best I may, and move into a new future.

Ann continues to write her incisive brutal poetry, like a window into a hidden mind. trouble reminds me how valuable MA has been - one phone call, and she is round to help, in anyway she can. So many good wishes from so many people, often even through their own sorrows. Of the others, "whom to curse, who is unnecessary, and who is worse" sums them up.

trouble
Learning who your friends are
is valuable,
but learning who is selfish, useless, of little point,
is an indispensable guide to how to conduct the future –
who to bless
and who to curse
who is unnecessary
and who is worse.

Wednesday 10 October 2018

Cat is dead

Sunrise in Hundon
There is no early mist, but a clear blue-sky sunrise, perhaps the last before he continues his winter trek behind the far wood and neighbour's house. Horse is standing quiet in his field. I am back in the waiting room where first I waited with Eds to receive the bad news of carcinoma of bladder. I am first in the room, and the receptionist books me into the system.

A large, bald-headed, florid man enters, dwarfing his wife, and stands at the end of the aisle. "You have to register," his wife says.

"I can't go down there - the computer's blocking it." His wife sighs and goes to sit down, "whatever you say." He moves awkwardly round the aisle to lean over the desk corner, forcing the receptionist to move. He sits, looking self-important, then suddenly smacks his scalp hard and examines his hand. "There was a fly on my head," he explains.

The Cat is removed and its corpse thrown in the bag for the fire. The nurse is a gruff, tall man with a coarse sense of humour, who looms over me. "This is one time you're glad you've only got a small one!" he laughs, referring back to the huge three-cylinder flushing job I had before. I go to the cafeteria with Ann and we consume several drinks.

MA took her to the physio yesterday for excersises to her broken hand. Waiting there, Ann got a new pack of mints out and said, "would you like one?" MA said, "thanks, mum," opened the pack, popped one in her mouth, then dropped the pack into her bag, leaving Ann mint-less. In the shop, she buys two packs of mints.

We walk round the grounds in the warm air. It is surprising what people drop or leave. By a waste bin is a clean, new, pink phlebotomy cuff, dropped when someone cleared rubbish from their pocket. In the woods under a bench is a hard hat and hi vis jacket, left by a workman after his sandwiches. In the cafeteria, I find a bright red carrier bag with a boxed radio-controlled toy, perhaps a present for a child. I leave it with the staff, and hope the child will get the gift.

Two hours later, the nurse puts me through my test.  From over 300mL, my residual is now 16mL. He beams. "This gives a new meaning to 'Free Willy'," he explains, "you're free to go."

Later I walk the dogs - their first proper airing for a week. The air is still warm, the sky clear blue. They race like puppies. I smile, for it is a beautiful world again.

Tuesday 9 October 2018

Getting rid of Cat

Cat has been annoying me all week. It leaks badly and smells, and claws me like hot needles whenever I move. I have to wear paper pants, and use a cushion to sit. I dare not walk too far or drive anywhere. I cannot wait to get rid of the beast. I shall tell them I no longer want it, when I go back tomorrow.

Ann has been telling me all week I must listen to them, and follow their advice if they suggest I need a new Cat, but today she changed, and said she would support me if I insisted. "It's only right," she said, "you shouldn't have control taken from you."

"No," I said, "you wouldn't listen when they said you might benefit from injections into your eye. It's the same for me. When I was eighteen, that was my eye. I saw the world through it; that's why so many men judge women by imagining them in a single way, and girls always say 'boys only want one thing'".

Ann said it was no wonder I could never get a girl friend, then suggested perhaps we could get a card celebrating 'Removal of Cat Day'. She looked on line, but kept getting pictures of other men's Cats, and nasty videos showing them being removed! MA suggested they ought to have banners and balloons, as it's clearly such a big deal. I thought that was going too far, but they did buy me a small anticipatory cake to celebrate.

Monday 8 October 2018

Clare is a different place

Clare is a strange place. It eclipses Hundon like the sun outshines the pale moon, for it is a thriving tourist centre, with many pubs, shops and tea houses, and numerous ancient sites dating to the iron age. There was a Roman town there, and a Saxon. The heirs of the Conqueror built the castle, and it featured in Magna Carta with its baron Richard de Clare. The rites to a medieval market have been held for centuries.

Hundon was mentioned in the Doomsday book, and doesn't appear to have changed much since, in population or area, other than its housing now being mostly modern brick conformities peopled by commuters or home workers like me, rather than the tithed agricultural cottages of history.

There are no historical sites here, and I am unaware of any archaeological dig or find. Even its church, though old, burnt down in 1914. It wasn't the war! The fire started even before that monstrous event. Now, it is an empty shell of history, barely used but to keep it on the ecclesiastic rolls. Its graveyard contains no famous son. There are no tea rooms, and no tourists to demand them. Its only visitors are kind relatives or friends who call from pity for we inhabitants, to take us out to for shopping or tea. And they always have trouble finding Hundon on a first visit, even with a good sat nav. But we do have a village shop, manned by (womened by? peopled by? no - staffed by, perhaps) volunteers who keep it well stocked and well run, with a hive of knowledge for we peaceful village folk.
Great train robbery at Clare

But Clare is a town, and seems to attract petty arguments that would have no place in Hundon. Last week, a notice was posted throughout the town telling of "The Great Train Robbery". This referred to an old railway wagon that used to sit on its rails in the museum. Entry was from a mock platform, and the wagon itself contained many fine exhibits from past glory days when steam locomotives thundered through the town. The museum was a useful spot to take children or visitors, but has been closed for a while. Now someone has sold off the wagon and provoked an outrage.

The Facebook pages of Clare are filled with petty squabbles. Someone posted a picture of a cigarette stub on the pavement outside the Co-op that led to a litany of accusations.
Smile Stone at Clare
There are some pretty walks in Clare, and I once spotted a Smile Stone hidden by the river bank. Shortly after were reports that 'someone has been stealing our smile stones', with many complaints and snide suggestions (no - it wasn't me. I only took the photo). But the fiercest debates are always with people who suggest Clare is a village. These are usually tourists or visitors, but this only raises a knowing smile from the residents. Then some incomer added a comment to Facebook to the effect that "they loved to live in such a pretty village". This raised over 30 replies! Clare is not a village. It is a medieval town. It was given a town charter. It has a town fair and a town market, with a High Street and Market Street. The debate was brought to an end by one resident commenting, "The difference between a village and a town is that a village has its idiot, whereas a town has two. On that basis, Clare is a city."




Sunday 7 October 2018

My Samsung Galaxy S6 explodes!

Following the call for an explosion yesterday, my Samsung Galaxy S6 responded by exploding before I did. It was Edwin who noticed it; he wanted to check something and said, "your phone's all bent," so took it out of the case. We thought it must have been from keeping it in my pocket, but then he noticed the back had been pushed off and was badly bowed; in fact, it had been blown off its glue by the phone's innards. Closer examination showed the battery had swollen like my overfilled Cat bag, and was bulging as though about to burst. Palpation revealed a tense fluid interior that looked potentially dangerous if it had it discharged in my pants.
My Samsung Galaxy S6 blows its back off !!

By chance, Edwin had just upgraded his phone, so he passed his old Apple on to me. Now we all have Apple phones and can talk together with Apple Talk. I just have the task of learning to use the thing. I have already learnt that Apple do not play any of my recorded music! It all has to be in Apple format, or downloaded from the Apple music store. Another example of greedy profiteers putting their shareholders before us, their users.

A short while after this, I followed the Galaxy. The levels of Dulcolax and syrup of figs entering the system may have been overdone a little.



Saturday 6 October 2018

Explosives

The downstairs toilet is patterned with book covers. There I see nothing but a row of old titles etched into my brain. One is Explosives by John Reid. The blue Pelican cover contains enticing blurb about its contents. "Tales of Explosives, their Magical Creation, their Fierce Energy, their Sudden Disruption...".  For four days I sit and stare at this, wondering when some decent explosion will happen for me to wonder at. I am taking prunes, syrup of figs, and repeated doses of Dulcolax, plus numerous cups of strong coffee on Ann's advice. But all remains silent. It is uncomfortable to be so distended, with colic and mild nausea making me reluctant to eat. But we must persevere.


The Great X offers to help

Ann has allowed me to take over her special room. This is her sanctuary, into which no-one is permitted without special and rare permission. It contains her private things, with their special meaning for place, time, or person, and is the place to which she retreats to be alone, or to recover her spirituality. Now she has put me in here to nurse. All week, she has worked tirelessly to support me, physically, mentally and medically.
The Moroccan Lamp in Ann's Room


She is having to do so many extra jobs now, for while still preparing meals, getting shopping in, cleaning, and making drinks, she has the additional burdon of jobs I used to help with: sorting the rubbish, washing up and emptying the dish washer, and cleaning the house of dog hairs and the garden of their mess. All the pain and swelling on her head where she fell and hit the pavement, with her yet broken and deformed hand still prevent driving, so she has to ask MA to take her to Clare for her hair, or to sort out ordering more catheter bags from the chemist.



This afternoon, we had a card from the Great X, covered in pink blossom and well wishes, with a message that, "she was so sorry she didn't live nearer, for she would love to help."

The Great X is a nurse who worked in a hospice, and is at her best with these cases of high dependency. She is brusk and efficient, and indifferent to medical mess. Ann said, "would you like her to come down?" Edwin offered to pick her up from the station, and MA said, "you'd love her to come. She'd be really good at looking after you."

I shuddered a little, and said I agreed that she would be very good, but I thought it might not be appropriate, and I didn't really want her fiddling with me down below.

Then the doorbell rang, and our young granddaughter, who'd been silently listening, said, "That's her; the Great X has arrived!"


Friday 5 October 2018

I am adopted by Cat

I do not know which is more likely to become infected: residual urine, or a catheter. As a man, I know I would prefer the residual, which for a few hours gave me mobility and relative comfort. As a medic, I know catheters often leak, and are always uncomfortable and get infected. However, the surgical team decided that a pool of residual is not a good idea, so I am now confined with a catheter and leg bag for a week, which is both uncomfortable and has developed a slight leak already, so I have to have pads as well.

Patients with colostomy bags are encouraged to give them names, but this contraption is unworthy of being so distinguished. So, like Holly Golightly, I call it "Cat", for it pulls and claws my leg, requires constant attention, and I had not sought it but it adopted me. Cat feeds off me, is not house trained, and requires constant cleaning out and grooming.

Bloggers are encouraged to post photos to lighten the page, but Cat is unworthy of even a derisory photo, so shall remain incognito. I have never been attracted to cats, and this is the worst of them all. My only hope is that it will be removed from my care and put down next week; but they have already hinted that if the residual does not clear, they may foist another Cat on me, with the possibility of a prostatectomy dangled threateningly before me as well.


Thursday 4 October 2018

A little light lie


On the day we are born, we are sentenced to death and fated to live our lives in a condemned cell. In youth, it is remote and unconsidered. With age, we learn for certainty that the sentence will not be remitted. The only unknown is the length of time in the cell. With age and cancer, the remaining time is shortened. Now I can only live each day as best I may, and enjoy those moments I am still free to explore a life yet to be lived, brief though it may be. For this is not a “clean” cancer, but a solid invasive tumour, requiring resection of the bladder wall, and eliminating the possibility of further treatment with purely intracystic local chemo.  This may require radio- and chemotherapy, or -potentially - cystectomy. 

The surgical, radiological and oncology teams will convene in two or three weeks to discuss future care. In the meantime, I continue with a bag and catheter, and such hope as I can muster. My fortune is to have such strong family support, though as yet I have not told them at work. I said, with some air of truth, that my wife would be in hospital this week, so I would have a few days off. I had not realised how racist is the phrase "a little white lie" until I started to write it; now it hits with great force, if one substitutes its opposite. I suppose this is not so little, though, as it is to protect me rather than the feelings of others. Perhaps that should be "a great red lie"; but the little ones, meant to protect rather than harm, could be called "little light lies". 



Going for TURBT


Tues 2/10/18
TURBT is "trans-urethral resection of bladder tumour". Edwin and Ann brought me to the ward in time for the 7am check in, Ann still being unable to drive. It was dark when we left, and Ann with her poor sight is unable to drive at night anyway. Eds dropped us at the door, and went back to see to the dogs.

So far so boring, then suddenly at 8am constant bustle and noise with the staff change over: cleaners with commercial floor polishers; trollies screaming like sirens as they carried patients out; an alarm from the adjacent bed going like a high pitched metronome beating out 2/4 time; and chattering nurses, auxiliaries, social workers, physios, students, the anaesthetic team, and occasional doctors. This is an acute surgical ward for all surgical specialities, so different surgical teams visit each patient. Mr Sangupta came to explain and sign the consent form: basically a legal agreement to let them do whatever they wish. It’s 11 weeks since the first sign of bleeding, and 4 weeks since seeing him and being placed on his urgent waiting list.

Ann helped me into the surgical stockings; they were tight and difficult for her broken hand. I said it was a pity Edwin hadn’t stayed, for his strength, but Ann said “he doesn’t do feet!” before she had to leave to wait in the restaurant. The op started at 10am, and was completed by 11am. Visiting wasn’t until 3pm, so Ann sent a text to MA asking her “to come straight to the hospital.” Unfortunately she sent it as a round robin, so up north Lucy panicked and started to make arrangements for the children to be collected from school before Ann could enlighten her before she set off. But MA and Edwin met in the lobby, and the three then spent the morning in town, lunching together.