Chronic renal failure - a textbook case study

I am going into pedagogue mode now, speaking as a medical professional to all who wish to learn about chronic renal failure (CRF) from the standpoint of the sufferer. So sit still and learn, or change channels now.

Anatomy. We all know they're somewhere towards the lower back part of the body, one on each side, and we know they must have little tubes connecting them to the bladder in some way. But when they're working and pain-free, no one knows where they are, and no-one cares. Only when they have a problem do we care - then the pain in the lower back on one or the other side points to their location in no uncertain terms.

Physiology. They do a lot of things we take for granted: they maintain fluid balance to prevent a build up of excess water; they constantly adjust the pH of the blood to be not too acidic nor too alkaline but "just right"; they maintain salt balance - not just the sodium chloride we shovel on our fish-and-chips, but all the other salts we usually ignore - potassium, calcium, phosphorous, and carbonates. They also bear some responsibility for regulating blood pressure, stimulating haemoglobin levels in the blood, and helping the immune system to cope with life's traumas and the nasties constantly trying to invade our bodies. Oh yes - on top of all this, they get rid of much of the toxic waste our bodies generate each day from burning food for energy ('good' waste), and breaking down all the rubbish we throw into our stomachs ('bad' waste) - especially from the evil meat, that palatable temptation of the devil to ingest poison in the guise of tempting steaks and succulant stews. Be not deceived - the stuff is poison as I have learnt to my cost. [Oops - I am straying from the true disinterest of the good medical text here.]

Clinical manifestations of CRF. These are the manifestations of each of the functions of the kidneys. Having many functions, it follows that there may be many manifestations. At the moment, I seem to have them all.
I have had erratic hypertension and been anaemic for some time. This leaves me tired; I would add irritable, but I think this is just my normal state, not the CRF. The toxic wastes and acidity of the urine makes it burn like crazy, and I need to keep running every hour or two (dysuria and frequency), or I won't make it in time (urgency), and there are horrid sharp pains shooting up my insides like knives. Last night I woke with bad nausea and had to sit downstairs sipping water with a bowl beside me.  The toxic products irritate the skin, and I now have red blotches everywhere, especially the back and legs, that itch like crazy and bleed easily everytime I scratch too vigorously (generalised pruritis). Additionally, a strong immune system helps prevent cancers developing, and the depressed immune system allows them to develop. I therefore blame the CRF for giving me two independent cancers (melanoma and bladder cancer), rather than the other way round.  In short - and in lay parlance - I'm a miserable wreck.

Management. I have to drink plenty and watch my diet. Basically, I must leave off all the things I like (bananas, tomatoes, oranges, olives and avacado) which have too much salt and potassium, and eat plenty of all the things I dislike (broccoli, cabbage, cauliflower and onions!). Also, I repeat, leave off the poison of red meat. If the CRF continues to deteriorate, younger men than me might be offered dialysis to rest the kidneys and remove the toxins, or ultimately renal transplant. Neither option is available for old men over the hill, so I shall have to continue on the downward slope.

The only other management options are to hope for a miracle (trip to Lourdes?), and be thankful for someone like Ann to put up with the grouchiness, and administer creams and drinks and manage my diet like an angel!

Good news

Grandad John Celebrates

Yesterday, after a week of fearful anticipation, I went in for my first follow-up cystoscopy. I had barely given my name to the receptionist when I was called in by the two young GU nurses and told to drop my pants and lie on the couch. They inserted the anaesthetic cream then – without giving it time to take effect – pushed up the fibre-optic cystoscope, inviting me to look at the screen and see for myself whatever they found up there. The pain is intense, though, like the largest needle inserted inside and poked about, so most of the time I had my eyes screwed shut and my fists tensed up. The news, however, was good - no sign of recurrence, and minimal residual inflammation after the radiotherapy! So I am a free man for another three months. This illness has divided our friends and relatives into two camps, those who came through and gave support and practical aid, especially to Ann when she needed it most, and those who didn't.

Selfie in the Bell as we celebrate

We went on to look at camper vans as a possible way of enjoying Britain on the cheap, then for a celebratory meal in the Bell that evening. At the next table was a family, two boys, their mum and the step dad. Only the man was talking through the whole meal, and I had my back to them, so didn't know the boys or the mother were there until Ann told me, once they'd left. The Bell has been nicely updated, with a reasonable though pricey menu. The food was tasty, but very rich and filling, leaving me bloated, with bouts of diarrhoea through the night. The penalties of rich living when too old to enjoy it; moral: enjoy it while you may.

Today, we went to see the newly released "Keeper", the story of an ex German POW, Bert Trautmann, who went on to be the first foreign player signed for Manchester City. It showed the depth of prejudice against the Germans after the war, which I well remember from my mother who hated the race. She was Lancastrian, where the film was set, but had spent four years as a nurse in Leicester Infirmary during the intense bombing of that city and Coventry, and knew at first hand the horrors brought by that war. The film brought out the usual negative reviews of the critics for an upbeat, romantic film, but we love what they call "cheesy" films, and enjoyed it, and the countryside and accents of post-war Lancashire brought back memories of the visits we made to my grandparents at that time.

More medical problems

West Suffolk Hospital is notorious for loosing test results. They have lost a few blood tests, ECGs, X-rays, and a full batch of respiratory tests. Once, they lost all of Mary-Anne's heart tests. But I finally managed to extract my blood test results from the GP after repeated visits and phone calls to the hospital. They showed stage 3 chronic renal failure. To put this in perspective, stage 4 requires dialysis, and stage 5 is "call the undertaker".

When Lucy heard the news, she immediately said she would be willing to donate a kidney, if required! How caring is that - the last thing I would have expected or wanted from anyone. I have been getting tired and can only walk slowly for some time now, and my taste has changed so even coffee tastes sour. I had put it down to post-radiotherapy, but perhaps it is the effect of having anaemia and being uraemic due to the kidney failure.

Yesterday came unhappy news that baby Theo was very ill, with diarrhoea and low blood sugar. He was rushed into hospital with a blue-light ambulance and kept overnight on a drip and antibiotics. This morning he was more alert though still with the diarrhoea, but the good news now is that he has been allowed to return home, so we all hope for a quick return to good health.

Hacking down Haverhill

Haverhill willows cut down

Beside Sainsbury’s is a wild park where oft I walk the dogs. Or wild it was until the environmental tree cutters took their power saws to it. It had a fine line of mature willows following the stream in  a vast acreage, now not coppiced but savagely butchered along with the scrub land and surrounding tree line. In whose name do they work such savagery? Certainly not for the wild life nor we who walk here.

I phoned for my blood results this afternoon: they show mild renal failure and increasing anaemia. Probably explains why I get so breathless and tire so easily. Renal failure is certainly associated with bladder cancer, and may account for my severe itching and weakness also. I will start some iron tablets today, and see if they help.

Death comes In dreams

Clare lights with The Bell and Annie

Clare always had pretty Christmas lights, which are still up. Ann says this will bring bad luck to Clare as it's well past 12th Night. It was certainly nearly bad luck for me. I went to The Bell for a coffee, but had to dash for the loo before I could order. Though a large hotel, there is only one cubicle in the Gentleman's and that was occupied. I stood in the corridor with rapidly increasing anxiety until I could wait no longer, so dashed into the Ladies' in desperation. I streaked past the washbasins almost in a state of exposure, but just made it. The cubicle there is tiny and almost impossible to turn round in or adjust one's clothing. To avoid further embarrassment, I left rapidly and washed in the Gents'.

Moving On

I do not spend time idly wishing
for things that are now lost:
the love that I've been missing
now belongs locked in the past.

The bird upon the swaying tree
sings a sweet, soft melody,
but it does not keep on tweeting
of things that will never be.

You can never make good cider,
with life's worm-eaten fruit;
wait for the warm glow of summer
and pick from the tree anew.

The stream will keep on flowing,
the waters fast move on;
I will not keep on dreaming
of a life that is clearly gone.

Annie Elliott

My body is at a low ebb. Only two hours sleep last night before I awoke to wee, and then only dribbles despite the urgency. I do not know if it is the after-effects of irradiation, or some manifestation of the cancer. I smell like a sewer – it is always bad when one can smell oneself coming. I do not think it is the smell of cancer (see "The smell of death"), but I suspect it arises from a permeability of the inflamed bowel wall. It is a strange battle, not an angry fight of open warfare, but more like a fifth column undermining the integrity of the whole, working undercover to bring disruption and sew doubt.

I awoke with memories of uneasy dreams. I was accompanied by a band of my children, attempting to reach the edge of a deep valley. I had been there before many times in previous dreams, but had always approached from the far end, usually having emerged from some tunnel. Now the track took us past a nest of tiny cobras, each erect with flared hood and menacing, and before us was a conveyor belt feeding a furnace that we had to cross. Though silent now, I knew a great lump of coal would soon drop from the chute, and the thing would start up. One of the children started to play with the conveyor belt, and I had to warn him to keep away, least he be caught up in it when it started up.

Ann's new poem too is about moving on. It is as though she read my dreams through that union of mysterious synchronicity that has been with us since we met. She too can smell the smell of decay. The time to move on comes closer now and I must prepare the way.

Post DXT

Diarrhoea bad

It was cold after walking the dogs through the field, with an air temperature that didn't pass 2͒ C all day. Waiting for Ann in The Swan, I succumbed and ordered a double brandy, to keep the cold at bay. Only later did Ann tell me that alcohol, along with spicy food, was verboten for the next couple of weeks. It certainly can inflame the bladder/colon. I deteriorated again after my lapse, with pain from both exits. At least Ann keeps us well provisioned against need.

Listening to another episode of Billy Connolly, I was moved in a different way when a reporter asked him, "What does it feel like to get a knighthood when you've come from nothing?"

Sir Billy bridled at this. "I did not come from nothing! I came from something - something special!" It set me thinking of my own roots, not a Glasgow tenement, but a tiny upstairs flat above a bakery in Leicester, during the bombing and the blackouts. Unlike Connolly, I have no affection for the city of Leicester, nor for Coventry. I could not wait to leave, and have no desire to go back to either place. But it did remind me that my parents too were not "nothing", but were equally special. Too easily have I thought of what they could have done or should not have done; but they gave me freedom to choose, and that is of huge value. I may have made some bad choices, but they were my choices: no one forced me down a road I did not want to travel. My lessons have been learnt the hard way, but they were my lessons, and forged the man I am become.

I do not know the cause of my bladder cancer; probably it will never be known. But I did know, as we all do deep down, that certain food stuffs, or excess alcohol cause harm. No one made me eat unhealthily, nor booze until the cells suffer. My life is my own.

Radiotherapy

Two wonderful new poems by Ann, reflecting the emotional upheaval that hits us all when cancer strikes, and the support given by the few who count.

Radiotherapy

Like an exclusive club
they sit crutching one another,
wishing each other health
drinking water from plastic cups,
no Waterford crystal here,
just disposable kidney bowls
hairless heads
wrapped in flowered bandannas,
or home knitted bobble hats
wrought by loving fingers,
there is gentle charity
in each soft, weak smile
of camaraderie,
sympathy
and huge humanity.

Annie Elliott

Lip Service

They come and go
with fancy words
and Judas' kisses,
touching sorrow
digits never dirtied,
souls never bleeding,
but yet, they touch you
more than the love
or the constant ardency
of the faithful band
who always have your hand.

Annie Elliott

I considered the crudity of radiotherapy (DXT) in previous articles where I likened it to "burning the witch". In some ways, it is just as crude. Lines of people waiting treatment of all ages and backgrounds, rows of old men drinking to fill the bladder for their prostate therapy; women for breast or ovary cancer; younger people with brain cancers; or children with leukaemias. Many in caps to hide their chemotherapy-induced hair loss. All get the crude blasting of the rays. Somehow, it is reminiscent of bygone days of treatment with insulin, or cold douches, or ECT: violent, indiscriminate, yet it is all we have.

I have to strip to my underwear, and pull them down to expose the tattoo marks to line up the lasers. I never pull them enough, so the young girls (radiotherapists always seem to be young girls) end up pulling them down further, exposing yet more of me to their indifferent gaze. They then push their hands under my buttocks to pull me about and line me up accurately. It is fortunate I'm in no state for arousal, or I might get more burnt than the bladder.  One day we will have potent treatments against cancer, perhaps a simple inoculation to stimulate the appropriate white cells to march against the invaders. Then shall we be unshackled form these mighty machines, and they will be no more than a curiosity in some documentary of the past.

Sir Billy Connolly sums it up in an article in The Mail today: "As bits slip off and leave me, talents leave and attributes leave. I don't have the balance I used to have, I don't have the energy I used to have. I can't hear the way I used to hear, I can't see as good as I used to. I can't remember the way I used to remember. And they all came one at a time and they just slipped away, thank you. It is like somebody is in charge of you and they are saying, 'Right, I added all these bits when you were a youth, now it is time to subtract'."

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

Schrödinger Witch

Ten treatments down and ten to go. Half way through. I feel as though the witch inside my bladder is half-dead and half-alive – a true Schrödinger witch, simultaneously in both states that will only be resolved into one state or the other when it is finally looked at.

Waiting with our coffee, we shared a small table with another cancer patient. She has already had both breasts removed, and is in the midst of chemotherapy before starting her own course of RT. She had had her blood test at 12:00 but has to wait until 4:00pm for her next treatment, so was bored with the place and happy to talk. She was eating a chocolate bar and works by refilling the various food slot machines, including the ones in Addenbrooke's, but didn't expect to back as a user of them. A young teenage girl was wheeled by with a drip and nasogastric tube in place, reminding us all of how fortunate we have been to have enjoyed relatively long healthy lives, and how unfortunate are some fellow creatures.

Nimue and Merlin by E. Fortescue-Brickdale

I am reading the wonderful modern version of the Thomas Malory King Arthur legends, The Once and Future King, which is a revelation and pleasure to take my mind away from myself into the mythical land of neverwas. White was such a deep scholar, his use of multiple words from ancient English is overwhelming, and I have begun to read it with the computer switched on to look up meanings, and am pencilling them  in the margins, for future reference. Almost every page has a new word, and they're all wonderful:  kerns were peasant foot soldiers; Nimue was the ancient name for the Lady of the Lake and keeper of the sword. I know little of these Arthurian legends, but they are wonderful stories. The first part of the book, The Sword in the Stone, strongly reminded me of some features in Harry Potter, and it is interesting that J.K. Rowling described White as "her spiritual ancestor".

Although legend, it is surprising how much overlaps even present day life. "England's difficulty is Ireland's opportunity", as Merlyn says. How truely prophetic of the current impasse in extricating ourselves from Europe! Ireland seems to be the one difficulty that cannot be overcome. How cursed we are to have taken Ireland, and left a land divided. Now we must reap that which are ancestors have sown.

Finding Zillian

Another day, another treatment. Yesterday continued much the same, with Edwin taking me to hospital. This time, they told me my bladder isn't emptying properly, and will have to be sorted out. So yet another hiccup to add to the diarrhoea and nausea. I just hope they don't need to recatheterise me.

There are two treatment rooms through the door I entered, and as I came out of mine to go back to the waiting room, I was pushed back and a crash team came hurtling past, so fast they misjudged the turn into their room and crashed into the door, sending equipment flying! When I finally got back out, poor Edwin had been sure it was being sent in for me, and was thinking how to tell his mum that I wouldn't be coming home with him! Even as we waited, two more teams raced past challenging each other to run faster. Then a trolley bed was rushed in, complete with drip, until there must have been a dozen or more people rushing past in total. Addenbrooke's is certainly the right place to be, if you must have a heart attack.

Me with Zillian the first table-tennis robot

Ann had a ghostly experience, looking for an old picture of me with my robot Zillian. She spent the evening looking through all 78 albums, representing thousands of pictures collecting a lifetime of memories, without finding it. She finally gave up and put the last album away when she saw a picture on the floor that had fallen out of one of them. It was the very same picture she had been searching for. She went cold like there was a creepy spirit in the room. Alas, poor Zillian is no more - only his ghost remains.

In the evening, we went for our annual Christmas Dinner to the Swan in Clare. This has become a tradition over the last few years, and was booked some time ago, before these treatments started, so we didn't want to cancel it. I managed to survive quite well, albeit without alcohol, and dosed up with antiemetics, but it was enlivened by the chatter of our granddaughters, who are a delight. One told us how she loves to cut off the heads of old photos, usually of her mum. When the photo is pulled from the album, the head stays behind, and they just get the shoulders coming out. She says it's fun to mix them up, and she has a bag of heads, like some psychopath. If someone annoys her at school, she can cut the head off their picture, and post it through their locker.

Trinken den Wein

Although it sounds a contradiction, Edwin visited a German market in Cambridge last night. He said he intended to "trinken den Wein", so I told him not to "trinken too muchen den Wein!" but he's never paid much attention to advice.

For myself, I haven't "den Wein getrunken"since I started this treatment last week. Not from any reason of virtue, but in case booze of any sort clashes with my stomach and makes me feel even worse than I already do. Matthew and Rosie came over today to take me in, and I carried a towel and sick bowl in case I vomited again. I spread the tablets out over a longer period today, and that seemed to help a bit. Though still nauseous, I avoided embarrassing myself or messing their car.

Radiographers wanted

There were delays for us all on treatments this morning, and the waiting area was full. One small child with no hair was wheeled in by her parents. Several women had scarves to cover their hair loss, and one woman had a large bald area over a depression over her skull, where probably she was being treated for a skin cancer. A man next to me, also with a cap on, told me he had surgery for a brain tumour followed by chemo and now radiotherapy. He was still in his 50's, and said he'd expected to have much longer to live. Now he was going to work through his money and get things he really wanted, starting with a set of Beat headphones, then taking his family on holiday early next year for which he'd rented a holiday home in Norfolk.

We are all at the point in our lives where cancer is the signpost to change, usually degenerate change. It served to point to the variety of people getting radiotherapy treatments, although a poster in the waiting area pointed to another reason for the delays: a shortage of radiographers. My radiographer explained that most people have never heard of therapeutic radiography as a career option, though it is so rewarding a career and full training offered. Anyone interested can contact their nearest hospital training group.

Chasing Dreams

Our conscious hours are so filled with existing and coping with reality that we ignore the underlying patterns of mind. We read, we converse, we cook, or eat, or watch TV.  We distract ourselves from our own being. Only in dreams do the elements combine in diverse ways to give presence to new thoughts. But for most of us, these thoughts vanish again in the bright glare of living.

Triviality

Alone
now as always
fighting new and menacing demons
wearing their black cloaks
and carrying winter scythes,
Alone
while battling petty minds
sweating stuff that is so small
not even a magnifier could find
its worth.

Annie Elliott

The subconscious behaves like an abstract mathematical construct. As in mathematics, where the ordinals are abstract concepts when unspecified until we give them specific form, such as two pens or three oranges, so too are our ideas like life or death or love. We can specify specific instances but in our subconscious being they are complete abstractions that can only present themselves to our conscious selves as concrete representations, such as the image of a broken car, or a pen that will not write, or an empty, dark room. This may be death of a life, or death of a relationship, or leaving a home that is loved.

Like the Fourier representation of a waveform, the components seethe in the brain like separate harmonics that can come together to build something new. Our mental knowledge is fragmented into tiny components joined by some algorithm of mind or memory. The elements are almost like coherent or entangled quantum waveforms. It is the conscious expression of them that 'collapses the waveform'.

The artist may seize these elements and recombine them as a new picture, a poem, an architectural construct, or a new mathematical theorem. But their underlying components are mere abstractions, and conscious striving to grab them leaves us but grasping air.

The ending of a bad year.

The year looks like ending as it's been all through. The company I work for is transferring my project for development in Japan, so I may be redundant before the year's end. And now the main sewerage drain is blocked with a tail back of filthy sludge, so we'll have to call the drain men out.

On only the third day of my radiotherapy treatment, scheduled for 6:30 last night, I was already dreading taking the huge doses of Vitamin B3. Edwin took me to Addenbrooke's, but I was right about the tablets, He had to stop on the way home to let me out, when I was repeatedly sick, and I have spent most of today in bed or shivering in a blanket.

One bright spot was a letter from my grandson, Luke. It is two full pages of beautifully written and interesting items, spelling out his hopes for A-levels and university, and quite unlike what one reads about messaging by today's youth, with their texted emphasis on Emojis and weird abbreviations. The art of letter writing is clearly not dead, and I was hugely moved to get the letter. Now I shall lie back and have another sleep, to gather strength of my next treatment on Monday. Only 17 more to go.

Meeting Sylvia

Two days ago, I had a meeting at the Holborn office of the company I work for, staying at a hotel in Stratford.  Ann came with me, to meet up with a friend she has not seen for some time. Sylvia is tiny, but a wonderful, vivacious lady who came into our lives when she was tutoring Edwin for his A-levels. She habitually dresses in black, and is even more intolerant of gluten than Ann. Food allergies are serious, and she is wise to take them seriously for there have been several incidents recently of people dying from incorrect labeling. We met for lunch in Jamie's, where she quizzed the waiter at length to make sure the pasta really was as gluten free as it boasted on the menu.

Ann and Sylvia meet in Jamie's, Stratford

Her son-in-law has cancer of the face, discovered by chance by the dentist who noticed a small ulcer. He had to have the side of his face, one eye, and some of his jaw excised. He is now having radiotherapy to the area, and will have to go into hospital to be tube fed during the last treatments, as he will be unable to swallow. Sylvia is struggling to support her daughter and grandson through it all. It rather puts my radiotherapy into perspective; the worst I anticipate having is being unable to wee.

Going home, there had been an accident on the M11 which was closed below Stansted. The information suggested it wouldn't be cleared for two hours, and the queues were unbelievable as everyone tried to divert off at the M25. We attempted an alternative route, but it took over four hours for a journey of normally one hour. I especially feel sorry for those trying to catch a flight out of Stansted, or a train from London. How can one person's thoughtless stupidity cause so much havoc to so many tens of thousands of people?  One blessing of autonomous cars should be a freedom from this type of accident. I do not even know if the driver lived, but when they do, those drivers who cause major delays through their selfishness should be automatically imprisoned.

I am listening to Schubert's string quartet No. 14 as I write this, the Andante con moto section of "Death and the Maiden". The tonal changes are breathtakingly moving, and lift one to another dimension. How can one person bring such wonder into the world? This too seems to put our problems into perspective.

Most of us achieve so little with the lives we have, whereas one person can change the lives of thousands, for ill or good. For most of us, the changes we make in the world are tiny, but whether we strive to bring poison or platter to the world is a choice we must all make.

Letter from Colorado

Ann is doing her Christmas cards, and commented how many widows we now have on the list, no doubt hoping she isn't going to join them any too soon.I had an email from Betsy, my cousin-in-law in Colorado, who was thinking of me ahead of the looming radiotherapy. Her husband, Ed, died quite suddenly this year, placing her as the most recent.  There is not yet a single widower.

On the Zephyr to Colorado

The days we spent in Colorado were particularly happy, especially for Ann who had heat stroke from the Utah sun, staying in a house without air conditioning when it was 44+ deg. We went from Chicago through Colorado on the California Zephyr, an amazing journey through the Colorado River Gorge. We often think of Betsy and Ed and the wonderful day we got in contact with them after my father lost touch with his brother in the 1930's. He came straight over with his sister, and we met up for the first time at Heathrow.

Having read the experiences of an American in Texas ("The Funny Thing About Bladder Cancer"), I am so grateful for our health service. It may be a little slower and less up-to-date than the US health service, but it is so comforting to know that the treatments are all available, without having to prove one can pay for them, or being left untreated if one can't.

Ann keeping me in order

Betsy has been catching up via my blog. The readership is growing in the UK, but it would be nice to see a US audience. I find it very cathartic. My only problem is, I'm often too honest about what I think of people, so Ann censors it if she thinks it will offend the people we don't want to fall out with. Ann is tops at keeping me in order, and never afraid to offend me, or tip cold water over me if I upset her. Dear reader, you must understand the torments I face at her hand. But she's worth it!

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.

Ring Tones and radiotherapy

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

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

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

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