You are currently browsing the category archive for the ‘Life’ category.

I think death will be a non-event, like turning off a light switch. We can’t control it much and Life itself is only an addiction to air.  I will delay it as long as I can, but I feel the carousel carrying me towards it starting slowly now.

That is why it is sometimes distracting and amusing to think about afterlife alternatives.time tunnel.jpg

It could involve different parts or stages. There is the going away or dying part. I like to think of this as like “The Time TunnelTV series opening from 1966–1967 with all the swirling around as the lead characters “tumble helplessly toward a new fantastic adventure, somewhere along the infinite corridors of time”.

But then to my mind it all settles down and becomes quite static. Now it is a matter of whether the dead can intervene to influence or change outcomes in the world of the living.

It’s a space explored by Will Self in “How the Dead Live“. Can the dead smell or taste anything?  Is it like the dead Sara Wilby in “Hotel World” by Ali Smith, where a teenage hotel chambermaid who has fallen to her death in a hotel now craves any sensation: “I would give anything to taste. To taste just dust“. Or, “the cold, in the rich small smells of soil and wood and dampening varnish“. Do you just lie there for eternity like the poem by Robert Browning? Where “Hours and long hours in the dead night, I ask “Do I live, am I dead?” Peace, peace seems all“. Death is not the end but it might be a bit slow. It might be noisy and chaotic to start with as in “Cré na Cille“, before it slows down to complete silence.

But as I said before, I think death will be a non-event, like an on/off switch. My heart will simply stop with joy and everything will just go black. No problem for me but rough on my loved ones.

It is more practical to think about a funeral. I see three options for me that I call “The Full Irish”, “The Woodland Burial”, and “The Pure Cremation”.

The Full Irish is my Catholic religious version. You need a Deity and a Religion to do it well, like they do in Ireland. First, we have to get you on an international repatriation service to get the coffin home to Ireland. Now in the west of Ireland the practise is to bring the coffin to a funeral home for the Removal and Viewing on day one (usually the evening) and then next day it goes to a church for the Funeral mass.  When I was a teenager in the ’70s it was still held in the house if the parlour was big enough but soon that was never the case. In any event you will need some stirring stuff for the funeral mass. Maybe “Panis Angelicus” sung by a bearded Friar in sackcloth robes. After the mass, the coffin is carried to the cemetery and graveside for burial. All very moving and visual but it would be very hypocritical for me to do this as an atheist. So that is ruled out by me.

There are very few cremations done in Ireland and so we need to switch back to the UK and use The Woodland Burial for that option. In my version you will be in the ground but buried in a non-religious space and with a humanist funeral.

The Pure Cremation combines cremation, no religion, and a speedy no-fuss funeral. It is what David Bowie and the writer Anita Brookner did when they were cremated without any funeral service and without any friends or family present. It solves the immediate problem of body disposal.

Once you have the ashes back (assuming you wanted that) you can have a ceremony. I’ve given some thought to a location near Maumeen (“Maum na Ean” or “Pass of the Birds”). It is a very minor road or boreen really off connemara.jpgthe R336 in Connemara that goes past the Failmore River. We usually go up to the summit and then back down again. The Failmore River itself joins the Beanlanabrack River east of Maam Bridge just before it enters Lough Corrib.

Why here? It’s as nice a walk as any in the area with good views but the clincher is local connection – my Great Grandparents had their family home here on the R345 near to Keane’s Bar. It’s just a ruined cottage now. They, along with my Granduncle, are buried in the local Church of Ireland graveyard for the area. It is also derelict – just another sheep field until you spot the church ruin. Only one stuck around – my Granduncle and Grandaunt emigrated to America. I don’t know if they were economic or political migrants, but they were among 40,000 Protestants who left the south from 1920-23 during the Irish War of Independence and the Civil War. My Grandmother converted to Roman Catholicism but that was never discussed. I’ve often wondered if it explains why I feel like an outsider sometimes and not fully Irish. We will never know the answer and these are sad turbulent questions.

Instead it would be nice to just let the river carry the ashes down.

Time for a status update.

On July 3rd I had a brain seizure maybe a blood clot, similar to a stroke. It resulted in several cognitive motor skill disorders, such as poor motor coordination, inability to locate keys on keyboard, confusion, and loss of short-term memory. This was a totally unexpected occurrence. It’s been like that since then.

I struggle against it with e.g. hunt and peck typing, with mixed results.

In my more lucid moments I think existentialist thoughts and wonder why this is all happening to me. There is no answer.

Stormy weather sure enough. And yet, a convergence. Derek Jarman, Benjamin Britten’s “Peter Grimes”, Shakespeare’s “The Tempest”. Gardens, flowers, tulips and why I hate to cut their stems. It goes from a symbol of beauty to one of decay and death. I’ve been listening a lot to “Au Fond du Temple Saint”, from Bizet’s September 1863 operaLes Pecheurs De Perles (The Pearl Fishers). Especially, the David Byrne and Rufus Wainwright duet version. There is comfort there.

I wish for improvement.

Dying is easy, it’s living that scares me to death“, says Annie Lennox , who isn’t currently dying quickly or elegantly compared to anyone else as far as I know anyway. “Dying is easy, it’s paying for it that’s scary for your family“, says the insurance salesman that everyone avoids. “Dying is easy, it’s the termination of the individual unity of consciousness that represents the ‘soul’ and signifies you as an individual that is difficult” says Schopenhauer because someone always has to come along and put a heavy on it. But he believed that each day is a life and that falling asleep is the equivalent of dying. Life in a day.

It was the last day of radiotherapy today (Fri Jun 30) and I’d already asked if it would be OK if I took the head mask thingy home with me. “Of course“, they replied. They’ve been asked this one before. “A ritual burning ceremony in the garden maybe? Or, perhaps just a simple wall mounting?” I muttered something about consulting the artist daughter before action any action. You can only stand and admire the built-in natural Art sensibility of the NHS. The Irish healthcare equivalent is just bland Americana by comparison – a derivative driven by corporate insurance policies. No life, no soul, no party. One NHS WBRT happy meal please. No problem, do you want Feng Shui with that or are you OK with just Hygge?

mask IMG_1127

But come here to me now, isn’t it a great likeness of me don’t you think? You can see the Mother’s side of the family and especially them first cousins in Boston who worked as cops and who never did make it back to Connemara not even for a short stay even though they swore they would at least a hundred times when there was a drop of drink in them and sure anyway isn’t it only a small world and a short hop these days?

Back in the day I promised I’d try to give you a glimpse or two into Death and Dying on these pages. This is my death mask. Slip into one of these and you’re not coming back. A one-way ticket. Just make sure you drag out the journey. Take the stopping train and the tourist route. Admire the scenery.

So red rover, red rover you can call cancer over but all it has to do is bide time. Your body will get weaker. This is why there is no “it” to it to fight. John McCain is advised to fight his brain cancer “Cancer doesn‘t know what it’s up against” – just wrong. I don’t want to be alarmist now but it is beginning to look grim.

It is time for calm. Focus on stuff that’s harder to get is better. When you need to make an effort to get it. You have to be there for it, not the other way round. A Yorkshire curd tart is improved by the realisation that York and Micklegate in particular are perfect and that the Holy Trinity church offers the best Gothic image you could possibly need or find on a bright chilly October afternoon just before twilight. Collect enough and you have life points.

It is best to avoid false hope. Is it a theft to harbour false hope? What about taking money for private treatment in those clinics which offer immunotherapy with a 100% success rate? And crowd funding? Even miracles have a ‘best before’ date. Use by, before you die.

Maybe you need lots of Friluftsliv from Daggfrisk to ensure Lagom. Maybe you need Ikigai. The Irish only have Cluthar which is the word for cosy.

That will be enough.

For me the important thing is to extract all the pleasure that is going. One of my favourite quotes comes from Sir David Scott via the gardening writer Christopher Lloyd: “The best time to drink champagne is at 11 o’clock on a Sunday morning when everybody else is in Church.

 

Every afternoon now around 4pm, when more civilized people are taking tea beside the croquet lawn and a somnolent church-bell across the indolent meadow calls the faithful to their knees, I slide into the belly of the machine. I’m up on my linear accelerator with high speed electrons flowing, like a Hawkwind song from 1972. But the sundial on the distant church tower still shrills ‘Tempus vincit omnia‘.

Having to stay rigidly still while surrounded by high-tech isn’t the most straightforward of asks, so it helps to let the mind wander and fixate on something else. Anything else.

So I’ve been thinking about my newly-installed auricula theatre. Allow me to articulate about my auricula theatre. I may not believe in a ‘bucket list’ but I still have pet projects that I want to do.

An auricula is a small alpine plant from the primulaceae (as in primrose) family. They have waxy evergreen leaves and flower in a wide range of colours from purple-black to palest yellow-white. They’re mostly tri-colour with either a gold or light flower centre and two circular bands of colour. They look for all the world like round enameled metal badges.

They are cheap and easy to grow but the challenge with auriculas is to protect a waxy flour-like coating called the ‘farina’ from rain drops. It’s also better if you can view the pretty flowers at eye level.

auricula

The solution is an auricula theatre. It’s a bookshelf mounted on a wall and painted black. It has a lead roof to protect it from the elements. But when all is said and done, it’s about aesthetics. The weathered terracotta, the lush green foliage, the black wood, the slate-grey lead, and of course the jewel flowers. They add up to something antique. The classic ‘more than the sum of its parts’ Gestalt.

That’s the botany part, but there is a social history part that is just as interesting. The auricula is one of those ‘florist’s flowers’ that are ideal for competitive growers who want the best specimens and most spectacular new hybrids. The story has it they were brought over to England by Huguenot refugees fleeing France around 1685. One of the main places they settled was around Spitalfields in the east end of London.

Over the course of the 18th and 19th centuries the auricula societies became more organised especially in the northern cities. Being small and with easy demands, you could grow a lot of auriculas in the back yard of a back-to-back terrace. A typical day out involved the showing and judging followed by a simple ‘shilling supper’ and a good supply of fine ale. I’m sure they were always a great affair.

Rich people liked auriculas too. My first proper exposure to them was at Calke Abbey in Derbyshire. I like Calke Abbey. The NT has left it in a dilapidated, non-restored state to show what the decline of an English country house looks like. Not that this affects the garden quite so much. Calke Abbey has a unique auricula theatre that is more like an altar or a small temple than a bookcase. The first time I saw it in the summer of 2004 I was a bit snooty because it was populated with Geraniums and I ‘just felt it was wrong’. What a pompous thing to think. They’d probably temporarily replaced the auriculas for a summer display of colour as the auricula is over by end May. That’s what I have decided to do for the summer. I’ve put my auriculas in a cool bright spot and I’m using Gerberas as a summer replacement. It’s an experiment.

To go back to the weavers of Spitalfields, they were noted for their love of flowers and plants. The first artisan botanists, using their natural knowledge. It’s one of the main reasons why the Columbia Road flower market in Bethnal Green exists and persists even to this day.

What I didn’t know is that the Huguenots were soon followed by Irish weavers in the mid-1700s following a crisis in the Irish linen industry. The market for silk had its share of downturns and taxes over the decades, but still employed 50,000 homeworkers working for master weavers on a ‘putting out’ basis. Think freelance, zero hour contracts. There were regular protests and riots against threats to wages, with the usual reprisals. In 1769, for example, the Spitalfield riots ended with an Irish and a Huguenot weaver being hanged in front of the Salmon and Ball pub in Bethnal Green. Poor John Doyle, poor John Valline, hanged December 6th 1769 on false informer evidence paid for by a master weaver called Lewis Chauvet. Over the following years, many of the Irish left weaving to work on the building of the nearby London docks.

So, I had to have an auricula theatre of my own. I dithered over it for years so it was lucky when it showed up as a birthday present back in May.

There needs to be a lot of optimism in gardening. When I was a Psychologist, I had to know about things like the Eysenck Personality Questionnaire (EPQ). I can’t recall which test it was in, and it may have been revised many times since, but one of the questions that often made me smile was whether you planted spring bulbs in autumn. It was an indicator of optimism.

Me. I plant trees.

As you may imagine, cancer and optimism are tricky companions. Too little optimism, and you may ‘turn your face to the wall’ with negative survival consequences. Too much, you’ll be annoying at best and may turn to radical solutions such as only eating raw vegetables as your alternative to chemotherapy. You have to be realistic and aspire to becoming what Philip Larkin calls ‘The Less Deceived‘. Cancer is your death growing inside you. It probably likes raw vegetables. Keep the body healthy for us, for we are many and our name is Legion.

All around me are plausible reasons for pessimism. This week, for example, the Swedish actor Michael Nyqvist died aged 56 after “a year long battle with lung cancer”. He was in the original ‘The Girl with the Dragon Tattoo‘ film. Born in November 1960, he was a bit younger than me. But, a “year long”? That’s no fucking time at all. What am I doing still kicking along after 8 years?

There is a recently published online tool for people with a diagnosis of colorectal cancer called the QCancer®-2017 (colorectal, survival) risk calculator. It’s driven by data obtained from many thousands of GPs in the UK. If I pretend it is 2009 again and I’ve just been diagnosed with my stage 4 CRC, it gives me an overall survival probability after 10 years of just 2.6%. If I tell it the truth that I have already survived for 8 years, then the probability of making it 2 more years to 10 years goes up to 60%.

I’m going to plant at least one more tree.

Like Jonathan Richman, I’m in love with the modern world. I may not be driving around Massachusetts these days, but I’ve got my radio on. Only it’s radiotherapy. I started last Monday. Every day for two weeks they clamp my head into my own personal mask and put my brain in a microwave. Or the equivalent of, let’s not quibble over frequencies. Maybe I can smell burning. It’s actually not at all painful but it leaves me a bit more dizzy than usual, and these days I am Normal Dizzy the great jazz musician at the best of times.

So, slow me down. Let me build a garden which is a haven of peace and quiet beauty. And live in it a life full of respair where despair is repaired by hope, or at least calm acceptance.

But please don’t confuse me for some apolitical moron on a path to personal discovery and heightened spirituality. I still spit with indignation at mindless repeats of old history, where right-wing bigots use the misfortunes of “destitute foreigners” to advance their own interests. I snort with incredulity that anyone can believe that the Tory agenda for the NHS does not involve causing it irreparable harm. I laugh at ex-Army types who talk about “terrorist sympathizers” but clearly have never had a serious conversation with someone jailed for planting a bomb.

Maybe I’m just more aware of the passage of time. The average human lifespan in the UK is 972 months and we sleep for 324 of those. My current personal target is to have stayed alive for 720 months. Maybe I’m aware that a high probability of early mortality was once common with World War 1, Spanish flu, etc. Maybe I see the things around me with sharper acuity.

My English teacher at the Irish seminarian school was straight out of Chaucer – a short, billiard ball of a man rigged out as a priest in his black robes. He was an 8 ball. Round glasses in a moon face on a round head attached to his round body. ‘Cream buns’ was his nickname. If we only had a bit more culture in us we could have called him ‘Skoleboller’ (‘school buns’), which are Norwegian cream buns.

He tried as teachers will do to instill some love of literature in the unwashed sons of farmers and small town solicitors. “Boys, shur ye’ll like this one, he was only a youngfella like yersels”. He was talking about Francis Ledwidge (1887–1917). The centenary of his death will be on 31 July. Ledwidge was a war poet. He survived the battle of Arras (where the English poet Edward Thomas was killed), only to die at the next one in Ypres.

The poem that the portly priest was praising prolifically is called June. It begins:

Broom out the floor now, lay the fender by,
And plant this bee-sucked bough of woodbine there,
And let the window down.

I didn’t have much time for the pastoral in those days, but it was so easy to visualise that country cottage that I was a little bit impressed. A woodbine is the folk term for honeysuckle, in case you didn’t know. The Victorians didn’t like young girls bringing honeysuckle into the house because the smell of the flowers was believed to cause erotic dreams.

You could maybe pair it with a little bit of Seamus Heaney:

Were we not made for summer, shade and coolness
And gazing through an open door at sunlight?
For paradise lost? Is that what I was taught?

Even a shower of rain is good in June. Petrichor is the name for the earthy smell made when rain falls on dry soil. Sara Teasdale (1884-1933) wrote about it:

There will come soft rains and the smell of the ground,
And swallows circling with their shimmering sound;

I try to see and hear things better now. Swifts that scythe the summer sky, madly and constantly screaming as they fly. The chuckle-cackle cry of a passing jackdaw. The mutually-reassuring chirps of long-tailed tits to the rest of their family group. A good day is spotting a Silver-washed Fritillary butterfly in the garden (and listening to Boris Johnson make a twit of himself on live radio).

Small pleasures.

Starting this year reminded me of that alleged (as in very probably made-up) quote from the diary of Tsar Nicholas II : “The year 1916 was cursed; 1917 will surely be better”. By March 1917, he’d abdicated and his family were imprisoned.

2017 didn’t start so well. I was going inwards on myself, fighting infections. A’s bike accident left her temporarily immobilized, unable to move from the sofa bed we had to prepare. It was becoming a small world with very little in it. I took to reading Harriet Martineau, the Victorian essayist and proto-feminist, who was very ill with a uterine tumor and spent five years from 1840 confined to her sick room. She wrote “Life in the Sickroom” as a sort of manual for invalids and their carers. As she said: “When an invalid is under sentence of disease for life, it becomes a duty of first-rate importance to select a proper place of abode.” Get it right, and the whole thing can be quite pleasant: “it is a comfortable season, if it may but last, when one’s friends have ceased to hope unreasonably, and not grown tired of despairing.” Those she charmingly called “the friends of my brighter days.

The only problem for us was that we were two invalids, and it was tricky trying to switch between the roles of the caring Housekeeper and the failing Invalid. I suppose it didn’t matter that much in the end. After all, as Harriet says: “how unavailing is luxury when the body is distressed and the spirit faint.” Sickness applies a filter that makes sensation less bearable. It’s like Sylvia Plath in her white-walled hospital when she is given a bouquet of red flowers: “The tulips are too excitable, it is winter here. Look how white everything is, how quiet, how snowed-in.

I have ignored Harriet’s other piece of advice: “There is no point of which I am more sure than that it is unwise in sick people to keep a diary.” She advised this as she was herself keeping a diary, as a sick person. Where did that reputation for Victorian hypocrisy come from? I suppose we can’t be too smug. We look on death in the same way that the Victorians looked upon sex.

Harriet recovered (the tumor probably moved to a less painful spot) and went to live in the Lake District. She was a changed woman, post-illness, and took to describing the local scenery in magnitude rather than the sick room in miniature. She entertained, and each guest was encouraged to plant two trees in the grounds. Her visitors included Elizabeth Gaskell, William Wordsworth, Samuel Taylor Coleridge, and Charlotte Bronte.

I too wanted that post-illness release. Peter Wildeblood was a gay man trapped by the same laws that did for Oscar Wilde. He fought back with a book published in 1955 that is often credited with changing the law. When he was released from prison he took off for a quiet life in the Canadian wilderness. There is a line in his 1999 obituary that resonates: “Here he cooked oriental meals, created a minute garden of exotic plants to attract hummingbirds, and photographed an amiable raccoon, which liked to sit in the branches of a pear tree.” That is what I craved most – an amiable racoon. Or, perhaps even just a sanguine squirrel. The other bits sound OK too.

But we came through our small-world existence in the sick room. Taking inspiration from those fine Victorians we discovered that one could simply scribble an order and then an errand boy from J.Sainsbury, the village grocer, would come tootling along with our victuals and other provisions. What a step forward in human progress!

A lot has happened since my last post. Nothing has happened since my last post. I live in a Beckettian world now. I feel like I have a lot to say, but nothing at all to report.

So, I saw Oncology on November 21. The purpose of the meeting was to review the results of a CT scan done November 15 and agree next steps avec Mon OncDoc. The waiting area was the usual gloom-ridden pit of human despair and misery. You can always tell the newcomers because they clutch the shiny blue plastic wallet they give you for your little bits and pieces. After a few weeks you have enough paper to fill many over, so it gets dumped at home. There must be a lot of sweaty palms placed on those blue wallets, and you’d like to share some experience with the clutchers. But, think about starting a conversation about your life with your fellow passengers on the London Underground. Now, double the cringe. It’s a private, silent world in the Oncology waiting area.

They were running quite late, but nothing unusual in that and I budget many hours more than it should require anyway. It was about an hour late when I got the call to one of the little rooms backstage that they use for consultations. They asked if it was OK if this nurse and that nurse sat in to listen. Fine, I muttered, but where is me consultant? Ce n’est pas Mon OncDoc. It was the same doctor I met after my infection episode. They let me out on a Saturday provided I came back on the Monday to review my blood results. I got there on the Monday, but the blood results were not back from the lab. A wasted journey for a tired body.

Now, today here she is starting our little chat with the news that the CT scan results are not back yet. I felt sorry for her. She must be the doctor in sole charge of late and missing information, the fact of which has to be communicated to the patient. I’m sure her actual job title is snappier than that, but she needs to take a hard look at the delegated jobs she is getting from Mon OncDoc. She was willing to have a go, and we could have a little hypothetical talk about might be, and what could become. I explained that, after all these tests, I could probably guess the results within a reasonable degree of accuracy. This meeting, I said, is more about the continuation of my care plan review with one who knows the history, and to obtain answers to certain questions about treatment options. So, I asked to be returned to the waiting area and recalled when Mon OncDoc was available, no matter how long that took. Not the best thing they’d heard that day, but my request was granted. Quite stressful, nevertheless.

When I finally did see Mon OncDoc, I said I was disappointed that the results were late but no matter, here is my guess at what they were likely to be. We crossed swords on some of my terminology (he didn’t agree that the tumours in my pelvic area were “rampant”, for example). But I pressed on. What I really want, I said, are answers to three questions. One, should I be more concerned about the recurrence of tumours in my pelvis rather than the secondary metastases in my lungs? (Subtext: is primary cancer location more fearsome than secondary?). He told me that the lung tumours were the priority. I’m sad to say he resorted to the war metaphor to explain why :-). Two, if in 2009 the preferred plan was surgical removal of the colorectal tumours, why not do another resection down there now? He said no-one would ever agree to that. He didn’t spell it out, but I’m pretty sure the cost/risk of surgery is out-weighed by any benefits to a patient with multiple site malignancies.

So, question three, given your answer to question two. What about this drug “Lonsurf” that I’m reading about in the Bowel cancer forums? It’s a third line treatment. I tick all the boxes. Would you consider it for me? He cogitated, but said “yes” reasonably quickly. He expressed his doubts about the drug efficacy, but thought it worth trying. Now, a “yes” means that he will submit an application. This is one of those drugs that are not cheap, and NICE needs to approve each case. I would come back on December 12 to hear the outcome.

After the drama, it was time for a quiet expedition to Thoracic Park on November 28 for another round of cryotherapy. There is an especially worrying tumour in the left bronchus that could shut down the whole left airway, and that would be the end of the rest of my left lung function. They had a good old go at that, and it was fun to watch the monitor as they ‘looped’ the tumour with what I guess is a very thin wire. Tighten the loop, and whoosh! A proper horrorshow, my droogs, with plenty of the old krovvy on show, if you pony me.

There was still time too for a trip to the Piss Factory. My colorectal specialist nurse fixed me up an appointment with her counterpart in urology. She changed all the pipes for a fresh set. I asked her to tell me the part number for the bags so that I could get my GP to prescribe. But, she went one better and phoned the medical supplies company to register me and arrange it all for home delivery. What a champion!

She wasn’t long on the phone, but what struck me was that here was a medical professional talking *about* me. Usually, we’re talking to each other. In answer to one question, she replied “He has cancer”. This is the weird thing. I sat four feet away and thought: “Do I?” It’s only been eight years for me to get used to the idea. But I was still thinking “Is that true?”

Later the same day I was at a techie event to do with Virtual Reality. I was mainly there because they followed it with a showing of the movie “Notes on Blindness” that I have been desperately trying to see. One of the talks on VR said their big problem was creating and maintaining what they call “Presence”. This is where they design the software and headsets such that your brain accepts the experience as feeling real, even if you’re know you are actually inside a game. For a moment there, in that urology consulting room, I had lost my sense of cancer presence.

But, as Nick Cave says, the tree don’t care what the little bird sings. It’s there. This not The Matrix.

So, this drug Lonsurf, what’s that all about. It’s another of those ‘double whammy’ combinations of two compounds. The first, called TFD, gets into the DNA and kills the cells. The second, called TPI, stops cell re-growth. It’s not a trial drug. It passed all the Phase 3 tests and it proved to be “fairly well tolerated” and “elicited an immune response in some patients”. It’s an oral therapy, so no hanging around for hours hooked up to a drip.  I’ll probably start on 3 cycles of 28 days each.

Why did I ask to do it? Let me borrow the answer to that from another cancer blog: “I got very depressed by the idea that I had to choose between nothing and chemotherapy”. What do I expect from it? For all these ‘wonder drugs’ that ‘cure cancer’, I get the impression there is no impact whatsoever on 80% of the people who take the drug. Of the remainder, 18-19% might get a temporary pause in disease progression, as if the cancer was figuring out this new variable. That leaves 1-2% who are the ‘super achievers’. They get the headlines.

When I say there is no impact on 80% of people, I don’t mean the side effects. There is a 100% chance that everyone will get some of those. The most likely is rapid decline in white blood cell and/or platelet count. Ulcers and skin reactions are also possible. But I’m willing to accept that.

On the subject of miracle drugs, the DeathLit Cafe had a new customer, but unfortunately he was only able to linger for a short while. The journalist AA Gill died only three weeks after dropping off his first dispatch. It was good copy. He had the “full English” of cancers, he wrote, which invited a visceral imagining of tainted kidney and liver pushed across a breakfast plate of foul malignancy. In fact, he had lung cancer that spread to his neck and pancreas. It sounds like it was a pancreatic tumour that finally did for him.

It’s a shame such a talented polemicist had such a short time to hone his experience and get down his insightful views on our very pet topic, Living With Cancer. The more so, because his fame would provide a powerful platform for any opinions that he did get time to share. His opinion was that a drug called Nivolumab would be his life-saver, if only the bad old NHS was not withholding it from him. I’m afraid this is just the optimism of a neophyte. He did in fact get access to the drug, but it made no difference.

The death list from 2016 grew a bit longer. Not a popular year, 2016. And yet, it occurred to me (too late as usual) that it would have been an awfully handy year to die. For decades to come, people could say about me: “Yes I remember the year he went. Same year as Bowie and Leonard Cohen and a bunch of other greats. Not that he was in the same league, of course, but it was the same year”. Btw I put the last bit as a nod to modesty. You don’t have to use that bit if you think it makes the paragraph too long :-).

Still, no use crying over missed hearses.

There is a short list of blogs I read that are written by other cancer (what is the word? – Sufferers, victims, patients, survivors?). You can’t help but read the notes passed to you by other ambulators among the walking dead. One came closer than most for a number of reasons.

She died on Christmas Day. I did not see that coming. The book she wrote in her final months has not even arrived on my doorstep yet, and I had expected many months more of following her blog.

Her book takes its title from a poem by Raymond Carver called “Late Fragment”. For a modern American novelist, Carver was a true working class boy with a story back-lined with a heavy-drinking father and his own alcoholism. He died of lung cancer at the age of 50, in 1988. The poem was written in the final stages of his illness and appears on his gravestone.

And did you get what
    you wanted from this life, even so?
    I did.
    And what did you want?
    To call myself beloved, to feel myself
    beloved on the earth.

To paraphrase another bit of Carver’s writing, this is what we talk about when we talk about death. To try to make sense of the dichotomy between the wonderful life-fullness of still being in this world and the pain and melancholy that lies just beneath. Where human kindness reigns supreme.  Where late December sunsets paint skies of infinitesimal beauty. Where, sometimes, nobody bothers to look.

A few weekends ago I was listening to a website of Indian music (http://www.dhingana.com/) and especially their Hindi Oldies section. I adore songs from the old B&W Indian movies of the 1950s and 60s. My long-suffering family knows my idea of a perfect take-away evening is to recreate the background music of the restaurant, but usually a bit louder and with less modern (as in bland) songs. You have to find those songs from somewhere.

Then it occurred to me that I didn’t have enough names behind the songs. What I mean is that I wouldn’t be so crass as to watch a BBC documentary about Glam Rock without knowing the difference between David Bowie and The Sweet. Whereas you could have summed up what I knew about Indian music artists into one reference – that indie song by Cornershop called “Brimful of Asha”.

At least I knew the person in reference is Asha Bhosle, who was best known as a playback singer in Hindi cinema. A playback singer makes prerecorded songs for use in the Bollywood movies. The actors or actresses then lip-sync the song lyrics during those wonderful song and/or dance routines that zing with joy or pathos. In fact, “Dhingana” is a  Marathi word that means joy, zeal and frenzy. That sums it up, right enough.

Playback singers worked really hard.  So hard that the Guinness Book of Records (2011) acknowledged Asha Bhosle as the most recorded artist in music history. Ever. She’s done the singing on over a thousand movies.

Now, it turns out (a) that Asha has an older sister, and (b) that many of the songs I like but didn’t know the artist were sung by her. Her name is Lata Mangeshkar, and she was also a playback singer.

But it isn’t all about the singers. Those actresses were eye-catching too. There’s Suchitra Sen for example, an Indian actress who has acted in many Bengali films. Possibly the most surreal plot-line of any of them is “Deep Jweley Jai” (1959). It means “to light a lamp”. She plays a nurse who is working for the R.D. Laing of Indian psychiatry, and many of his cures for patients involve Suchitra forming a personal relationship. With this one guy, for example, who is diagnosed as having an unresolved Oedipal complex, she has to impersonate his mother. But in a more loving sort of way than usual. If all this sounds like a bad porn movie plot, I refer you immediately to the year it was made. It’s as chaste as anything. But it is full of partly-lit and shadowy cinematograhy and she looks stunning in those close-ups. In a word – iconic.

They all look iconic, these singers and actresses.

Most of these women are still alive, and now in their 80s. For myself, I was pleased with my web surfing on that Sunday evening, and knew that I had some great Hindi songs to listen to as well as a better grasp of who was behind the music and the films.

On that same evening of October 28, an Indian woman died in the same hospital where I was born. Savita Halappanavar was 31 years old. It isn’t difficult to do a quick search for the news details. The basics are that she had a miscarriage. Because (allegedly) there was a foetal heartbeat, she was denied a termination. Because her cervix was dilated she suffered septicemia and organ failure led to her death. She seems to have been denied basic Christian charity in a “Catholic country”.

When the pictures of Savita appeared next to the awful news, they too seemed iconic. Just iconic for the wrong reasons.

Many people in Ireland (and the diaspora) were shocked and angry. Personally, I was angry to read that a symposium on maternal healthcare in Dublin a month earlier had concluded that abortion is never medically necessary to save the life of a mother. As you might imagine, the Pro-Life mob had a field day with that. I was also dismayed to see several Labour politicians had voted last April against a Bill on Termination of Pregnancy in Case of Risk to Life of Pregnant Woman because (I can only presume) it was put before Parliament by the other side. You don’t have to read back too far in this blog to know I’m no fan of Sinn Fein either; but what happened to all those campaigns I took part in during the 1970s that were all about the issue, not who had proposed or seconded it?

The symposium in Dublin got some of its scientific respectability from the eminent doctors who spoke there. One of them has worked in Galway for decades. It was sobering to me when I talked about the Savita case with my mother: she reminded me I was a difficult birth (a breech who kept turning back the wrong way, no matter what they did – nothing changes). Without prompting, she tore into the same eminent gynecologist. Her feeling was that he saw women suffering as part of some Divine glory, and that they should endure it. Strong stuff, and coming from a pensioner not some snotty young Leftie.

Maybe I write these stupid posts as a form of catharsis. Maybe it’s to let out the anger of the fuck cancer / why me? But I want to turn back the clock many years and tell immigrants such as Savita and her husband: there’s a reason why so many of us have emigrated from that Island, and it isn’t all to do with economics. Too late now for her.

Have finished reading “The Prague Cemetary” by Umberto Eco.

It’s a tough read, mostly because it’s main character is an anti-hero called Simonini who doesn’t like much apart from fine dining. He’s especially anti-Semetic, and the intensity of anti-Jewish comment never lets up. The storylines concern his exploits working as a forger in the employ of various Secret Service agencies from European countries including France and Russia. The timing of the novel is late 19th Century and it’s leading up to the struggle between imperial powers that was WW1.

The ‘life work’ of this anti-hero is the creation (i.e. forgery) of the infamous “Protocols of the Elders of Zion” which you’ll find even today quoted as a real document on far Right websites propagating the myth of Jewish dominance and emergence of a new world order. In the words of Rabbi Joseph Teluskin, “Thousands, perhaps even tens of thousands, of Jews have died because of this infamous forgery.” I think he may still be under-estimating it, so if you ever need an example of a dangerous book, this one will meet the criteria. It was a favourite book of Adolf Hitler’s, so this is also a backdrop to WW2, the Holocaust and the Final Solution. The title is taken from the ‘fact’ that these protocols are a record from a meeting of Rabbis in the Jewish Cemetary in Prague. The Rabbis discuss how they will corrupt Gentile society and culture for the benefit of Jewry and Zionism.

Eco finishes with a message that “they” are still among us. Given the deeds of far-right maniacs in Norway (for example), he isn’t wrong.

Most of what comes from the mouth of Simonini  is pure vitriol. The beginnings of conspiracy theories start with an actual book published by a French Jesuit named Abbé Augustin Barruel who reckoned that Philosophers, Freemasons and the Illuminati were plotting the overthrow of all European heads of state and religions. Of course, at the time  there were actually Jacobins behind the French Revolution and other radical movements, so like in any good conspiracy the seed was watered and fed. You might laugh, but when I was passing through religious-taught schools in 1970s Ireland, there was still a deep and vocal distrust of Freemasons and Communists  among the priests (Orwell’s “1984” proved it all, you see). Later I became aware of the existence of Catholic Secret Societies such as Opus Dei.

Life is really stranger than fiction. One quotation I’d hear from communists during my student days was that people would never be free until “the last of the kings was strangled by the guts of the last priest”. This is actually a quote from Jean Meslier, a 17th century Catholic priest of 40 years service who (it turned out upon his death) wrote the first book recommending Atheism as a philosophy.

It’s a bit of a jump, but the attribution by footnotes style of the opening chapters of The Prague Cemetary put me in mind of Brian O’Nolan (writing as Flann O’Brien) in “The Third Policeman”; and especially the way he uses the fictional polymath of the de Selby character. These footnotes ramble on, appearing to provide an anchor to the increasingly surreal elements of the main book, but in reality doing nothing of the sort. Just like conspiracy theories…

It’s a very 19th Century device. By using it so well Eco shows that he understands how novels are constructed, and in his time Brian O’Nolan had the same ability. There’s one wonderful example where he starts a footnote on one page and finishes it eight pages later having completely wandered off the original topic. A genius.

Another infamous anti-hero is that of Jean Des Essientes who appears in “A rebours” (“Against the Grain”or “Wrong Way”), a novel by Joris-Karl Huysmans. It was written in 1884. It’s said to be the “poisonous” novel that Oscar Wilde references as the one that corrupts his character, Dorian Gray, and leads to his downfall. The book was cited during Oscar’s trial by the prosecution as evidence of sodomite leanings. The Des Essientes character has also tired of life, and seeks solace in the sensual. It’s the book where he covers his tortoise in jewels, leading to the allegorical death of the unfortunate creature. One of his few remaining pleasures is Gastronomy, and that reappears with Eco’s Simonini. I like the story where Oscar Wilde and Aubrey Beardsley went on a sort of pilgrimage to meet Huysmans in Paris, only to find that he had become a Trappist monk who refused to meet them and encouraged them instead to abandon their wicked decadent ways. Beardsley must have took him seriously – he later converted to Catholicism and wanted to burn his erotic drawings before he died.

What links Huysmans, Brian O’Nolan and Umberto Eco is they all possess an encyclopediac knowledge that they can unleash upon their novels. It’s as if they have rummaged in a library of classic texts until every word was jumbled up inside them in a seemingly useless mess. O’Nolan and Huysmans also shared the dubious distincton of working as bored Civil Servants in Dublin and Paris respectively, but as far as I know Eco has only ever been forced to become an Academic.

Nothing surreal happens in my life. However, I did return from my holiday in Ireland to find two letters waiting. The first was from the President of Ireland wishing me a recovery from my Cancer (sincere thanks, Michael D, it lifted my spirits big time). The second was from the British Army containing a medal for my voluntary service. Before the big bad bogeyman (aka Gerry Adams) gets the wrong idea, I’d like to put it on record that I have never served the British Crown nor furthered her interests (apart from paying tax, like). Like John Lennon before me, I’ll be returning the medal.