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Not so good. Have lost ability to type. It may be time now for Döstädning, or “the gentle Swedish art of death cleaning”. I want to make sure that I say this first:

I wrote in the Book of Love and, better still, I found my name written there too.

They say almost everything will work again if you unplug it for a few minutes including you. I guess we’ll find out.

I just wish there was more time to see plays such as Woyzeck in Winter. In 1837, just as Woyzeck nearing was completion, Georg Büchner died of Typhus before he was twenty-four years old. In many ways he was the first Punk. He also said in 1834: “I despise nobody, least of all because of their intellect or education because nobody can determine not to become a fool or criminal.”

And “Time will say nothing but I told you so.



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.


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.

Went to Oncology in late July to hear the results from the CT scan I had many weeks before that. Short summary is there was no good news. It’s still progressive, which is bad, but then there’s nothing new or catastrophic to report either. Most of my tumours are increasing in size. For example, the largest area of soft tissue on my upper left lung went from 37mm to 46mm and continues to obstruct the left upper lobe. It’s pushing against my left pulmonary artery and I must hope that it doesn’t push through to trigger the La Traviata outcome. There is more soft tissue in the pelvic area, in something called the presacral space, which tends to cause pain in the lower back and hips.

Also on the agenda was my suitability for the drug trial. The genetic screening result came back negative – I’m not in the 20% minority and don’t have the right wrong gene. Therefore there’s no place for me on the amusingly-named “STARTRK” trial, and I won’t be boldly going anywhere.

One interesting revelation was I could still opt for more chemotherapy, if I so desired. I said that I didn’t think I wanted to do so. I now regard chemo like the “dead cat bounce” they talk about in stock markets. The poison kills enough cells and pauses growth to make a short term impact, but it isn’t lasting. It may even provoke my over-eager genetic triggers to produce even more cancerous cells as a response. I left enough wiggle room so the consultant could tell me what a fool I was, and that it was best for me, but generally he agreed that my decision was “right for me”.

At least the Thoracic Park adventure continues. I was there just after for a spot of injecting, cutting and general vacuuming of the lung tissues. They’d left it a while since my last visit, and I think they’d forgotten me until I reminded them. But they did a tidy, neat job, and I’m better for it. Unlike the Piss Factory, who seem to have finished with me now, without so much as a farewell night out.

So, where does this leave me, Doc? I’m a bit of a conundrum to them. When I first appeared on their horizon in 2009 I was something of a classic “type 4” – advanced cancer, diagnosed late, wonky stem cells, poor prognosis, etc. But (with their help and treatment) I’m turning into more of a “type 2” where the decline is of the slower variety. Just another reminder that any specific cancer is really many different forms of disease hitting the same organ, and any cure has very many targets to pursue, with all the excitement and frustration that entails. They can’t do very much, but at the same time not much is going badly. Remember I’m supposed to be on a “two years, probably not five” countdown and that timer started 20 months ago. I have to say I don’t feel like I’ve used up >80% of the allotted time. Maybe it feels more like the 33% option.

This is clearly a good thing. The longer, the better. But at the same time there is no certainty. I’ve just read Paul Kingsnorth’s novel “Beast” about a would-be hermit, alone on the moor and probably unhinged, who stalks and/or is stalked by a mysterious big cat (very Beast of Bodmin). There’s a sentence in it that makes me think of cancer: “I am in the presence of something that does not know time“. Michael Faber’s short book of poems “Undying” tries to make sense of it all while watching his wife Eva die from cancer over a six-year period. He calls it “a harmony of dark biology“. On the one hand, more time is good. On the other hand, who doesn’t want to wake from a nightmare where you are being stalked by the dark beast? To quote Umberto Eco: “is this not a death undying?“. Yet I know that I am definitely no Tithonus, doomed to get older without ever dying.

I am fairly sanguine about it all. I am equally concerned about putting some vivification back into my life. We went away twice in July, which can be a big deal for me and my personal medical supplies mobile apothecary. It all went pretty well. I connected with as much of the wildness in man and nature as I wanted. The pleasures required are small and simple – a type of bird or butterfly will do it. Maybe my role now is just to get on with it, smile a bit, and not be too much of a cancer bore. “To be a rock and not to roll”, as the song says. You’d think that under the circumstances one would want to gorge on life’s pleasures before time runs out, to take in all the sapori e saperi that is to be had. But the appetite is weak.

Meanwhile, the Exterminating Angel smiles, and moves along.

The last few lines from Samuel Beckett’s The Unnameable (L’Innommable) have been on my mind.

It will be I? It will be the silence, where I am? I don’t know, I’ll never know: in the silence you don’t know.
            You must go on.
            I can’t go on.
            I’ll go on.

Such a strong feeling that I am between places. Anohni, when she was Antony, said she was scared of the middle place, the one between light and nowhere. But this isn’t about “the passing”. This is about the weird drag of wanting something to happen but not wanting it because it isn’t a good thing. On the surface it’s all very humdrum – the time dust that settles on my life layers deep and I can’t be moved to brush it away.

I went back for some more cryotherapy on my lungs. I came and went with the familiar operation in-between. I didn’t speak after with any medical staff. I figured if there was something they wanted to tell me, they would seek me out. Even the radical is banal now.

I had a letter from the Hospice. It told me that I was being discharged from their active casebook because they hadn’t heard from me (the explicit arrangement was that there would not be any need for contact until I got really sick, but I wanted to be known to them). It was like being chucked out of the disco by the bouncers for something you hadn’t done. The Death Disco, in this case. Should I complain? Do I really want to be allowed back in that particular club? There was no-one there I fancied anyway. Maybe I should just trudge home alone through the streets of the living. I can always go back. They’ll save the last dance for me.

My bank took away my old gold credit card. They replaced it with a new one, a new type of deal that matters nothing to me. It’s a new colour. Now, even my credit card is black.

Jenny Diski died of her cancer last week. One less Death Lit auteur for us all. Nobody was better at having cancer than she was. Her memoir “In Gratitude” has only just been published. I ordered it in tribute.

“Under no circumstances is anyone to say that I lost a battle with cancer. Or that I bore it bravely. I am not fighting, losing, winning or bearing,”

We should respect that, but we can still note that she met Death the mugger in a dark alley, and she faced down her assailant with a sharp wit and dignity. I’d like to emulate that.

It’s Spring, so I went to my favourite Bluebell wood to see the hazy waves of shimmering blueness among the trees. It did not disappoint. But with all the Easter 1916 stuff swirling in my mind, I could only think about Padraic Pearse and his poem written on the eve of his execution:

“The beauty of the world hath made me sad, This beauty that will pass” 

The next doctor I see will tell me about a possible Phase 1 drug trial. Yet another possible cure for Cancer that needs a guinea pig. I’ll listen carefully to the list of side effects, and if that doesn’t sound too bad, then who knows, I may say yes?

Until then, I drift.

I am becoming a connoisseur of writings about the experience of having terminal cancer. About the experience of being told “you’ve got cancer”. About living with the disease. About the desire to cling on to life when death is imminent. About what you leave, and what you leave behind.

Let’s call the genre “Death Lit”. I like to tell my friends that I read about Mortality so that they don’t have to (yet).

There are some good ones to choose from. In Cambridge alone there are two notable writers living with terminal cancer and writing about it. I can read about people who take their treatments in the same hospital as I do; who meet maybe the same doctors in the same treatment rooms. Although, I do like to think my Oncologist has time for me only.

There’s Clive James and his Reports of my death series in The Guardian. The London Review of Books has Jenny Diski’s series, starting with A Diagnosis. Both are still going, but they share a concern that perhaps it’s been too long a gap between the public announcement and now. The series can only have so many episodes; the play only so many acts, before it just becomes tedious for the audience.  However, I hope to have the same ‘problem’ in my plot development, and already have a blog title ready for it: It’s Alright To Linger. They too must linger; there’s no danger of any of us being called malingerers.

Returning to the Death Lit, you have Christopher Hitchens, who died in December 2011 aged 62 from oesophageal cancer. After his diagnosis, he wrote a book Mortality. In it, he talks about how he is given a passport and a personal escort to a place called “Tumourville” for his “year of living dyingly“. With all the meds, he could say: “I don’t have a body, I am a body.” He lost his voice as a consequence of the illness, and that left him with one over-arching wish: to win back his “freedom of speech”. That sounds familiar.

Oliver Sacks (“The Man Who Mistook His Wife for a Hat”) died August 2015 aged 82 from eye cancer that spread to his liver. He wrote about it in the New York Times. He quotes the philosopher David Hume, who found himself in a similar predicament in 1776, but said “I possess the same ardour as ever in study, and the same gaiety in company.” Sacks writes that he is not without fear, but mostly feels gratitude: “I have loved and been loved.”

Henning Mankell (“Wallander”) died October 2015 aged 67 from lung cancer that led to metastasis in a cervical vertebra. He contributed several articles to The Guardian. He talks about “Brief, clear moments of despair.” On the advice of his wife, he wrote about waiting because cancer involves so much waiting. Eight months after diagnosis, looking out on a damp September evening, he wonders if he is “still the same person now as I was then?”

A very good question, indeed. It’s like that Lou Reed song: “Candy says I’ve come to hate my body. And all that it requires in this world.” And, “What do you think I’d see? If I could walk away from me.” Does cancer change you? There are no maps of this place, and we’re just snowflakes drifting down onto its damp earth. We are gone before we can speak.

These are all well-known authors. Then, there is the age thing. All of them have (or had) at least reached their 65th year. Many of them speak explicitly of their ‘good innings’ or some equivalent metaphor. Not so for Kate Gross (“Late Fragments”), who died December 2014 aged 36 from colon cancer that spread to her liver. She left two young children, and the “Afterwards” was as important to her as the “Now”. I can relate to that.

These erudite people share similar sentiments. There are so many common themes. We’re not “fighting cancer” (at best, it’s fighting us). We’re not braver than most, it’s just where we find ourselves. And bravery is choosing to do something scary, such as climbing a mountain or donating an organ. Plenty of bravado, however. We can stare this thing down.

One theme is whether to hope? How do you find hope when there are no grounds for hope? You don’t have to look hard to find examples where someone’s child or parent is terminally ill with stage 4 cancer and metastasis not responding to treatment, and they believe their only option is to try some treatment at a clinic that will cost $40,000 for the first session of ‘alternative chemotherapy’. Alternatively, go full-out for a miracle food diet or supplement:”Man Rids Body of Cancer Using Frankincense / Sandalwood / Turmeric / Kale / Cannabis Oil” (delete as applicable). Actually, I’m willing to try the Cannabis Oil. But, spare me the healing and transformation stuff please.

To use a phrase from Antonio Gramsci on modernity, the challenge is how to “live without illusions and without becoming disillusioned.

One more theme is the magic of small things. In the hyper-reality now illuminated by terminal illness. I don’t know if there is some chemical given off by the maddened, growth-crazy genes in my cells sending me on little psychedelic trips. All I know is that on a sunny December day I saw the orange and red berries on the bare winter branches, and they were dazzling jewels against the azure sky.

Mostly, the theme is about facing death. Which of course requires you meeting Death first. I’ve been thinking some about the personifications of Death. As usual, my mind is a jumble of poems and song lyrics.

There is Charon, the boatman who ferries you across to the underworld if you have a coin in your mouth or over your eyes to pay for passage. There is T.S. Eliot’s Eternal Footman, who holds your coat (you won’t need it ‘down there’, it’s already warm enough) and sniggers as he does so. “And in short, I was afraid.” Emily Dickinson has us meet Death the Coachman, who kindly stops his carriage for her. And I really like the Supernatural Anaesthetist from the Genesis song, which is an outfit that Death made himself. His method requires a mere puff of anaesthetic into the recipient, who is then no more. In the sleeve notes we learn that Death likes meeting people and wants to travel.

Of course, there is the Reaper, who is sometimes Grim. It reminds us we are all equal in the end. The scythe cuts through all the stalks without preference to any. Probably why the image became popular around the time of the Black Death. You can play chess with him, and maybe that will save some people at least for a while longer.

It’s interesting that Death is nearly always a male figure, at least in English and German cultures. Yes, there are the Moirai and the Parcae sisters in Greek and Roman mythology; where one of the sisters cuts the thread of life that her other sisters make and measure out. But in more modern culture, Death is rarely personified as female.

Not so in Mexican culture, which has Nuestra Señora de la Santa Muerte (Holy Death) to help with a safe delivery to the afterlife. Santa Muerte is usually depicted as a skeleton in a hooded robe and carrying a scythe. It’s Grim Reaper-ess meets Virgin Mary territory. Mexico also has La Calavera Catrina, the rich and dapper well-dressed skeleton that has become a standard icon for Day of the Dead imagery. Not that this was on any benefit to its creator, José Guadalupe Posada. He died penniless in 1913 and was buried in a mass grave.

The idea that Death could be a mother figure seems more appealing than all the disengaged male alternatives on offer. Mother Death is there for healing and to keep you safe, but when the time is right she will take you away from here. It’s another transition, just like birth.

A short animated film called “Coda” came out in 2015 and won a ton of awards. It tells the story of a drunken man who dies after an accident, and his soul is “collected” by Death from the park where he has taken refuge on a bench. She (Death) is ever so kind. She is patient and instructive, and grants him the wish to see “many things so I remember”.

Coda from and maps and plans on Vimeo.

It’s all romantic stuff. I still think it will be like Tony Benn said in 2012. He said he was “not frightened about death. I don’t know why but I just feel that at a certain moment your switch is switched off and that’s it. And you can’t do anything about it.

But if we must insist on imagery and personification for the ‘passing over’, we should at least pick someone nice to be our travelling companion.

In the more mundane meantime I start 2016 with a bang: on January 4th I return to Thoracic Park for more of their fine cryotherapy injections of ice into my windpipe. Hope my voice isn’t affected. I have a customer presentation on January 5th in London. Maybe I can ask Death to change the slides.

In November I went for the results of my CT scan. I’d had the scan early because the original date clashed with a short holiday in Norfolk. There, I watched the seals bask, listened to the curlew’s cries carry across the salt marsh, and basked in warm sunshine in the shelter of the sand dunes. After the basking we trudged 5 miles back along the pea shingle and I pissed blood for the rest of the evening, so I fear even Nirvana has its nuisances.

They told me there’s a new tumour. This new little pony lies on my Trachea, which is the windpipe that then divides into the bronchi before they enter the lungs. This one is nasty in so far as it’s a focal lesion that has started on the outside and wormed its way through the lining to form a little bulbous mass inside the duct of the pipe. This could be worse if it goes the other way. There are many arteries around there, and if it breaks though one of those… Well, then the levee breaks, my lungs fill with blood and it’s over. It’s similar to one of the ways that tuberculosis carries you off.

He likes to give me extra, does my Oncologist. He reminded me of the tragic end scene in Guiseppe Verdi’s opera “La Traviata” (The Fallen Woman), in which the heroine (Violetta Valéry) dies of a massive blood clot. Now, you just don’t get that type of quality in a lesser institution, and I’m dismayed the CQC does not take this into account as a factor. Feed the mind, I say. We’re going to die anyway, but absolve us first from the original sin of ignorance.

“How romantic”, I muttered. “I rather like the sound of that”. How we all laughed. I must have subconsciously channeled Byron, who famously said that he’d like to die from consumption. But, in the end, only Keats could achieve it, as he made his way to the icy silence of the tomb.

Verdi travelled to Paris in 1852 with his own “fallen woman”. There, they saw the theatrical hit of the day, which was an adaptation of Alexandre Dumas’s novel “La Dame aux camélias”. It’s the tale of a prostitute who falls in love with a young nobleman, much to the outrage of his family. She is the lady of the camellias because she wore a white flower when available, but a red flower when indisposed by illness.

Maybe I could adopt this convention, and place a flower (red or white) at the top of this blog to signal my health. The trouble is, I prefer to grow red camellias.

As soon as he could, Verdi hotfooted it back to Italy and wrote his opera around it. Violetta is his ultra glamourous Parisian good-time girl who knows how to party and still spit scarlet blood onto white cloth with the best of them.

You’d recognise the tunes from La Traviata if I hummed them. There’s the drinking song “Brindisi” and “Sempre Libera” (Always Free) with its many soaring trills and high notes. But it’s the finale of Act III that we must now have in mind – “Gran Dio!…morir sì giovane” (Great God!…to die so young).

Gran Dio! morir sì giovane,  (Good God! That I should die so young,)
io che penato ho tanto! (After so much suffering!)
Morir sì presso a tergere (To die so near the dawn)
il mio sì lungo pianto! (After the long night of tears!)

Unfortunately the opening night was not a success. It’s said that the audience could not empathise with a well-upholstered Soprano playing the part of a beautiful waif-like creature consumed by the ravages of consumption. So they booed.

Should I too follow the cadence of days in a foreshortened life and penser sur mon mort inactuelles? It’s true that I cough, spit and live in my viscous world where unfortunately nothing is vicarious. My words are earthy: phlegm, mucus, sputum. My colours are smeared: blood-streaked, frothy pink, pearly-white gelatinous. It’s all so achingly fragile.

But we never give up, my aria-admiring Oncologist and I. He referred me back to my old friends in the Thoracic Park to take a look at these lungs of mine. Today I had another CT and a Bronchoscopy. It was partly to take a look at the possibilities for stenting the collapsed lobe, but it was also interventionist. They used cryotherapy on the new tumour, which was a first for me. It is a technique where they freeze the cancerous tissue towards destruction. They did not go on to “pull it out” as they’d suggested they might during the pre-op. But there is time. My tumour must not feel a warm and capable living hand, but rather the cold and icy fingers of cryosurgery. Perhaps that will haunt its days and chill its dreaming for a while.

It all went well and I was able to go home a few hours later. But, you’ll excuse me now if I leave you to wallow in my pensive, poetic melancholy. I shall lay the back of my right hand against my forehead, throw back my head, and sigh. There are fresh, clean, white sheets on my bed and I do have rather a bad cough.

This time last weekend I was at the Cambridge Folk Festival. No-one was more surprised than I that I thought it a wise course of action to stand for hours each day for three days at a festival. When have I ever been sensible?

We took a bus across town to get there on Friday and walked the last few hundred yards past the Cherry Hinton park to the entrance. The summer weather was balmy so by no coincidence it was flying ant day. Swarms of black dots were everywhere on the pavement, like sheet music notes escaped from the Folk Festival and now running wild. Tiny, freedom-seeking crotchets and quavers, let out for the day. A nuptial flight aimed at hitting all the high notes. But it also made the mad swifts scything the air scream all the louder in their feeding crescendo.

I’ve lost count of the number of folk festivals we’ve been to. I haven’t always been impressed with their choice of headliners – often too safe and conservative for my taste. But you always know that each year there’ll be some amazing “starter-out” to be heard in the Club tent and something in the second tent that you would die rather than have missed. A few years back, for example, we heard the Carolina Chocolate Drops and were blown away.

One of the three people in that band is called Rhiannon Giddens, and she was back this year. Playing on the main stage, just before Joan Baez. I’m not going to gush too much (giddy over Giddens?) over how good she was. Just treat yourself to a few minutes on her YouTube page.

She took a picture of her audience at the end:

I can just make myself out, standing about four rows back. This is me, like, on cancer. Having a good time. Zen and the art of cancer maintenance.

The place to improve the world is first in one’s own heart and head and hands, and then work outward from there.

― Robert M. Pirsig (Zen and the Art of Motorcycle Maintenance)

We also discovered last weekend that Gin goes very well with Folk. Very well indeed. Is there nothing that Gin can’t do?

I recall from 2010 Rhiannon mentioned having an an Irishman for a husband, but I just assumed they were living in North Carolina or thereabouts. Turns out she lives in Limerick, has two sons there enrolled in an Irish-speaking school, and speaks well of her Irish mammy-in-law. The clue was maybe when she said pronounce her first name to rhyme with “Shannon” (rather than the Welsh way it’s usually pronounced). Stunning, but the fella she married should have had the decency to move her to Galway. At the very least 😉

Speaking of Ireland, Gin, and Zen puts me in mind of the American poet Theodore Roethke who died in 1963 of a heart attack suffered in a swimming pool. He was only 55. The pool was later filled-in and became a Japanese-inspired zen rock garden. There wasn’t much Zen in Roethke’s mad-drunk life, but he was a wonderful poet. Take this from one of his love poems:

I kiss her moving mouth,
Her swart hilarious skin;
She breaks my breath in half;

Words for the Wind (1962)

In July 1960 he accepted an offer from Richard Murphy, an Irish poet, to visit him on Inishbofin island off the Connemara coast, where they could go sailing in Murphy’s boat. Unfortunately, Roethke liked the bar better than the boat and drank himself into such a manic depressive state he had to be committed to the mental hospital in Ballinasloe. He was driven there by the local priest.

Before he left Dublin for the West he went to see W.B. Yeats’ widow Georgie, in the company of John Montague, another Irish poet. After the visit Montague took him to a pub in Rathmines. As they waited for their first pints of Guinness to settle, Roethke had finished two large whiskeys and was onto his third. Montague asked him why he drank so much. Roethke replied: “I drink like this because I’m afraid of death. It’s all I seem to think about.” He spent a lot of time coming to terms with the inevitability of death.

He wrote of death as “the far field”:

I learned not to fear infinity,
The far field, the windy cliffs of forever,
The dying of time in the white light of tomorrow,
The wheel turning away from itself,
The sprawl of the wave,
The on-coming water.

— The Far Field by Theodore Roethke

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.

I could start this one with the phrase that I don’t know whether I am coming or going.

The word back from the Royal Marsden was that they had analyzed my biopsy sample and, get this, it didn’t match any of the gene sequences they know about. Trust me to have one of the ‘other ones’. I may have the exact numbers wrong, but the gist is that they track around 40 sequences out of a possible 500. They only develop directed or targeted drugs for the known 40, so that rules that out.

Or, does it? They called with that news and said they would keep on looking for a trial. Then, they called again and said they had something to discuss. But they only needed at that point to check my availability – even before Xmas. I said yes, of course. A letter duly arrived with an appointment for me in early January. Ah! Quel grand mystère!

I will of course go along to find out more, but I also need to find and keep a balance between the two extremes of “I’ll try anything” and “I’m giving up”.

There is a very timely talk on this as part of the BBC 2014 Reith Lectures. It’s by Dr Atul Gawande , a practicing surgeon and Professor in Oncology at Harvard. He talks about how doctors are not brilliant in dealing with the end-stage for their patients. He says it would help if doctors had four questions that they always asked palliative-stage patients, and if they stayed quiet to hear the answers.

The four questions are:

  1. What is your understanding of where you are with your illness at this time?
  2. What are your fears and worries for the future?
  3. What are your goals if time is short?
  4. What outcomes would be unacceptable to you?

He talks about one study in which half of the patients got normal oncology care and the other half got normal oncology care plus they saw a palliative care doctor who would discuss with them what their priorities and goals might be for the end of life. There were a number of benefits that only befell to the 2nd group, but the amazing one was that they lived 25 per cent longer. Mind you, most of them only had 16 or so weeks, so that isn’t a miracle cure or anything like.

When I had been ‘bumped’ from the Cambridge early phase trials and just after I went to the Marsden for the first time, I had a meeting with my ever-believable oncologist. “Let’s say that nothing will come of the Marsden thing”, I said, “and let’s talk about the end-game as it may play out for me”. He did as I bid and gave it to me straight. I have a very good understanding of where I am with my illness at this time. I believe that 2015 will be relatively normal for me, health-wise. I believe that in 2016 things will start to deteriorate with my lungs. I believe that 2017 and especially 2018 will be “borrowed time”. I’m OK with that. I don’t have a lot of fear and worry about it all. I’m going to die, and that’s the long and short of it.

We had the “you should make a bucket list” of life ambitions talk (he didn’t use the exact term, but lists were mentioned). I’m probably supposed to want to make some last great contributions to the world. I should probably see the Amazon rain forest or the Aurora Borealis.

And there is still time. Time for you and time for me. Lots of time for all the indecisions, visions, and revisions that will follow.

For now, my ambition is humdrum. I want to make a success of my work, mainly so it will be worth something to somebody after me. I want to show people that this isn’t all so bad, so if I can find the dignity of death they will be less unhappy after I go.

But I am not ruling out writing The Great Novel and (maybe better still) kicking some odious politician in the b*lls. We’re a risky bunch, the walking dead 😉

There will be time, there will be time    
To prepare a face to meet the faces that you meet;    
There will be time to murder and create,    
And time for all the works and days of hands    
That lift and drop a question on your plate;