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One must carry on.

Most days I feel like I have been pulled through a hedge backwards physically and cognitively. But to be still alive is maybe all. Autumn has come now to colour the landscape into yellow butter with flecks of dried red chilli.

There are days when I don’t feel like dying. There are days when I don’t feel like I am dying. But it is like a fog that creeps across to obscure my otherwise refulgent life. I had hoped for more energy. The sudden lack of my spatial awareness e.g. judging distances, hand-eye co-ordination has been a blow. I miss my garden and my gardening projects. As Helen Dillon quotes “When the gardener goes, the garden door is closed for ever“.

I still expect a big bang or two as new lesion shock waves hit. I was taken with a comparison to the Cassini spacecraft story from last week where they deliberately crashed the probe into Saturn’s atmosphere because it had run out of fuel. Twenty years it had been in space. But Cassini was the opposite scenario – it was planned.

Of course I still do not want to die but I know I have no choice, and I must not waste the time I have left. I want to be stoic and accept it. I want to change things actually in my power. I want to harness my energy for the end. I want to make it easier for others, especially my loved ones, to survive my loss with least disruption.

Culture keeps me going now. Stuff such as “My Ireland” by Stephen James Smith. I think it is a masterpiece. I love it for the line “Naysayers and Peig Sayers” even though that doesn’t actually mean anything. Simply put, this poem is a masterpiece.

I felt sad about the death of Holger Czukay and still in awe of how he made the song “Persian Love” in 1979 using only analog technology.

I have been thinking about Döstädning, this Swedish term for the art of death cleaning “by which the elderly and their families set their affairs in order“. It doesn’t appear to have much to offer for me because I’m not in control. It’s back to the Cassini scenario.

I like it that Jenny Diski is remembered. It seems so long since the deaths of Kate Gross in 2014 and Jenny Diski in 2016.

I’m going to add a cannabis oil product to my treatment. This is me acting alone, in addition to the doctors advice. Sadly, the one I will use – Canabidol™ – is THC free, meaning it is a non psychoactive and will not get me high. You’d need to be in the USA, on personal use and not importing to UK to stay legal for THC.

Last weekend I steered the family towards the Devil’s Dyke to pick sloes. I could not go but I gave directions.It all went to plan. Three litres of sloe gin are now maturing for Xmas.


My MRI scan happened on Monday at 07:30. It was no problem making the early slot as I tend to wake these days not later than 4am. Probably some drug side effects. In this, the heart of summer, it isn’t any burden to shake free the tangle of night roots and just enjoy the calm. As the surrealist painter and author Leonora Carrington says: “Dawn is the time when nothing breathes, the hour of silence. Everything is transfixed, only the light moves.

Later the same day I had the results via another appointment with my OncDoc. There are two clearly-visible tumours at the back of the brain, one on either side. I’d guess the one on the left is around 3-4cm, and the other is around 2-3cm. That would put them on the larger side of the usual scale.

Two lesions far apart rules out a resection (surgery) and is less suitable for the ‘pinpoint’ or high-dose stereotactic radiotherapy method. It does leave the way clear for what is called whole-brain radiotherapy (WBRT). That will be the one for me. It has the extra advantage that it will treat the bits that are not yet visible, as well as the two above.

By the way, there’s a very high probability I will lose all my hair because of this. But as we both remarked in the car on the way home, the decision is a no-brainer. Sorry, I’ll stop it at that.

I have to get a personalised head mould made for me so I can stay perfectly still. That happens this week so I could be starting treatment as early as next week. The sessions are typical radiotherapy – daily for two weeks. Each session probably consisting of 5-10 minutes of zapping, 45 minutes of preparation and setup.

This gives me an excellent opportunity to play my CancerBingo game, in which I get the chance to include stock quotes that just belong in a Cancer blog. Today seems right for the ‘famous’ Anton Chekhov quote: “Any idiot can face a crisis, it’s the day to day living that wears you out.” Actually, it’s not his quote at all. It comes from a Bing Crosby 1954 film called “The Country Girl”, which in turn was based on a play written by Clifford Odets.

The title of this blog I borrowed from my current favourite Aldous Harding, a New Zealand folk singer with more than a little of the Gothic about her. One of her other songs mentions “Baudelaire in the afternoon.” I like me a bit of Les Fleurs du Mal. He did say: “You have to be always drunk. That’s all there is to it—it’s the only way. So as not to feel the horrible burden of time that breaks your back and bends you to the earth, you have to be continually drunk. But on what? Wine, poetry or virtue, as you wish. But be drunk.

Time for a gin and tonic.

And so the story goes he wore the clothes. He said the things to make it seem… Probable.


When I was 12 and looking around for male role models, the standard issue on offer had long curly locks / facial hair, wore a cheesecloth shirt and faded blue denim flares, and had a gold medallion peeping through his unbuttoned shirt. He walked in a cloud of Brut after-shave, spoke of women as “chicks” and valued his masculinity more than anything else. Even more than The Eagles.

And then, there was this Starman on the radio. We picked him up on Channel 2. He told us it was alright to be different. We were pretty little rebels, driving our Mamas and Papas insane. As long as you knew who Jean Genet was (or were prepared to find out), you were in. If Life is a University, he was the hip Lecturer.

Back then in 1972, David Bowie made a palimpsest of mine and many a child’s life. Everything was scratched out, ready to be written again.

It’s been more than forty years since then. Not every song and new record seized on as avidly as in the beginning. But as I continued to think my life in song lyrics, it was frequently one of his that sprang to mind.

Time Takes A Cigarette, Puts It in Your Mouth

Five Years. That’s All We’ve Got

Looked A Lot Like Che Guevara

Always Crashing In The Same Car

Cancer, eh? Too soon to know what type. To know the back-story. It doesn’t really matter. I still owe you. I haven’t lost a father or a brother. I was a follower of the Prophet and now he has left us.

In the blessed and cold, in the crutch-hungry dark, was where he flayed his mark. Oh, and he is gone.

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

Back this week for another shot at receiving a slow and lugubrious infusion of the poisonous platinum, and this time the platelets had rebounded back to 293 so it was Chemo-a-go-go. Slow and steady wins the race, you know. The only issue was what precise treatment to give, and there was a conference call mid-day to review it. In the end, the dosage of carboplatin and the number of days to take medication (4) were duly pronounced.

There was time in the day for a more detailed discussion of the CT scan result. “Stable”, was the word. And that is exactly what they are. The friendly spot on the right upper pulmonary lobe was exactly the same size. The slightly messy mess that is the collapsed left upper pulmonact scan fullry hilum is no messier than it was. The ‘third man’ node on the anterior mediastinal mass remains the same. I don’t have any recent pictures, but you might like this one we took earlier.

Is “stable” a glass half-full or half-empty? We’ve talked about this before, you know. Standing quite still indeed when you are in a wind tunnel is a very good thing. Not to be dragged tumbling headlong into the ungovernable purple fury of the maelstrom will do quite nicely for now, thank you.

It’s been a period for the Vortex.

We managed to catch the “New Rhythms” exhibition of works by Henri Gaudier-Brzeska. This year 2015 marks 100 years since he was killed by a bullet dead to the centre of his forehead in the First World War. It was on June 5th, 1915, and he was just 23 years old. It is bit of a special collection that Kettle’s Yard holds, because Jim Ede collected him avidly and also he acquired the estate of Sophie Brzeska in 1927 from the British Government.

Sophie and Henri were quite the couple. She was a Polish Governess, he the 18-year old untrained son of a French carpenter with ambitions to become an artist. She was twice his age. He annexed her surname to his own, but they never married. They probably never even had sex, or, at least not very often. They were both as insane as a box of frogs. They arrived into London at a time when the Futurists were being heckled by the Vorticists, and both groups hated the namby-pamby Bloomsbury Set and the fussy old neo-Georgians. They so wanted to deliver a heimlich manoeuvre to regurgitate the modern. Henri and Sophie lived on the Fulham Road and Henri had a studio under the arches in Putney. Ezra Pound bought a couple of his early pieces, but only after teasing him about the unpronounceability of Henri’s surname.

What would Wyndham Lewis and the Vorticists listen to today if they were clubbing in London? Surely, they would trace it back to old-school man-machine motorik and the disembodied dance of a Cabaret Voltaire? But now, it would certainly be the sputtering haphazard glitches, whirrs, bleeps, pops, and clicks of nu-Electronica. Or maybe it would be a haunting refrain of disintegrating music played in a decaying industrial building? One thing for sure, they be cool and having a Blast.

Apparently, when it comes to the interpretation of dreams, to dream of velvet is an indication of feeling comfortable, calm, cool, or collected.

Tomorrow is the last day of the first cycle of my drug trial. Really, it’s the second cycle. The first one was shorter and only involved taking the experimental drug as a baseline test. The second one was proper – combine chemo on Day 1 with ten days of the drug over a 21 day cycle. The original idea was to take it for longer but they found that the impact on white blood counts was too harsh. They reasoned that the body needed some days off to recover the platelet count. Maybe you could try sucking on roast bone marrow or something to help the process along, but alas diet and white blood cells don’t correlate much. At least, not to that degree. Red blood cells, that’s a different matter.

This data is based on results from two people. There are (I am told) four of us in total taking the drug. In the world.

For my part, it’s been altogether episode-free. Not one side effect. The drug bounced off me. The chemo bounced off me. This is a bad sick joke. For someone this sick, I am ridiculously healthy.

I’ve probably now put the bad curse on tomorrow and the blood test results.

If not, then on we go to Chemo#2 next Monday 9th.

I’m pleased that the risk/benefit decision to do this trial is paying off so far. At least, the part of it where I took the risk has returned no bad results. The benefit is still an unknown. It seems improbable that something this innocuous could result in anything tangible. But if I turn out to be a Super-Responder, that will be fine by me.

And so I dream of velvet.

I remain calm but detached. As Edmund Husserl said about “embodied experience”, it is all about chaos, absurdity, and the accident that is our subjective life in the form of a human-lived body.

I read about nature. I feel as much in common with the birds as I do with the world of people. I look at the night sky. Yesterday, Jupiter was visible just above the (nearly full) moon in the East, like a symbol from a flag of a country that does not exist. Each day grows warmer and the chilling effects of chemo will soon be no more.

I wear my father’s coat. I miss him and I think of all the gaps that appear in the world.

i wear your coat
it makes me believe
you’re still here with me
it keeps me warm
and all of my fragile kingdoms
from harm

–Clara Engel (2008)

But, at least I dream of velvet.

We understand complex things by making metaphors for them. For a long time, we explained cancer metastasis by a seed and soil analogy. The cancer cells were like seeds drifting in the body, looking for any fertile soil in some distant organ. Too simple: it could not explain why a cancer primary would always form secondary tumours in the same places, following a predictable pattern. Another analogy was the iceberg. Parts would break off and drift in the body’s ocean. Mini icebergs tend to thaw and disappear, and so too many of the float-away cancer cells are caught and destroyed by the body’s immune system as intruders. But not always. These little icebergs carry some genetic coding within them that ‘fools’ the immune system. They also seem to be pre-engineered to be successful when they turn up at their destinations.

This is why we talk about cancer as a betrayal. The biology we depend upon lets us down, and works against us instead.

One less-understood aspect is why gene-based drug treatments work well on primary tumours, and often hardly at all on secondary tumours. One reason could be that the secondaries are not just clones. They are evolved secondaries. It’s a little bit of Darwinism going on inside you.

A third metaphor is drivers and passengers. Some cancer cells are primary in getting to the destination, but they’re not necessarily the ones that do the damage. Think of it as an armed robbery. The getaway driver isn’t usually the one that shot and killed the bank teller.

It’s a Tarantino-esque metaphor based on Reservoir Dogs where the car contains several crooks on their way to a robbery. The driver may or may not have free will to do what he is doing, but he has certainly underestimated the psychopathic nature of one of his criminal passengers. When they get to the scene of the heist, the psychopath surprises everyone, even those that drove him there, with the horrific brutality of his actions.

Carrying on with the idea of cancer as the body in betrayal of itself, the title of a song called “Body Betrays Itself” needed further investigation. It’s by an artist called Pharmakon, who turns out to be a New York based woman called Margaret Chardiet. It’s not the most soothing of listens, given this genre would be described as noise / electronics/ death industrial music. But the album really resonated with me, and seemed to speak to the screaming horror of realisation that your body is destroying you from within. Something that you don’t go around talking about all the time, assuming you don’t want people running away in fear.

There’s a great quote from Pharmakon on her record label’s web site. She was meant to go on a tour, and ended up instead in hospital losing an organ. Why and what organ isn’t important. What is important are the words about how she became aware of the complex network of systems that are our bodies, and the time gap that occurs when your mind has to accept that one of the body’s systems has failed. She says:

“I felt a widening divide between my physical and mental self. It was as though my body had betrayed me, acting as a separate entity from my consciousness. I thought of my corporeal body anthropomorphically, with a will or intent of its own, outside of my will’s control, and seeking to sabotage. I began to explore the idea of the conscious mind as a stranger inside an autonomous vessel, and the tension that exists between these two versions of the self.”

We’re back to the passenger motif.

I don’t know why she chose the name Pharmakon. It could be from the Ancient Greek word pharmakon (φάρμακον) that means “drug”, “medicine”, or “poison”. It can also mean “sorcery”. Obviously, where the modern word “pharmacy” comes from. But a pharmakós (φαρμακός) in Greek religion is also the ritualistic sacrifice or exile of a human scapegoat or victim. When the crops failed, they’d choose someone (or two), feed them well, then kill them and scatter their ashes in the ocean. I suppose it comes down to whether, as an artist, she feels like she is a drug or a scapegoat outsider, or both.

Once, allegedly, the Egyptian god Thoth (the one with the head of an Ibis bird) offered a gift to the god-king ruler Thamus. Thoth had invented writing, and offered this as a pharmakon for the Egyptian people. He said that his gift would help memory and be the cure for forgetting things. But Thamus rejected the gift. He said that it was not a remedy for memory, but merely a way for reminding. Reminding is not pure memory recall; it can be a mere reconstruction.

So, a pharmakon is both a remedy and a poison. Writing was both a cure and a poison, and was offered to the Egyptians as such. It was indeterminate, or undecided, as to which. By declaring it was a poison, Thamus had decided the pharmakon.

In Plato’s “Phaedrus and Phaedo” this story is the basis for a conversation between Socrates and a student (Phaedrus), in which Socrates tries to convince the student that writing is inferior to speech. The philosopher Jacques Derrida used this story too in his essay “Plato’s Pharmacy”. Derrida is best known for the concept of “deconstruction”, where you start with a text (the pre-text) and look within for the meaning. Derrida argues that Western thought and writing always involves dichotomies or polar opposites. More than that, the other side is always the negative or undesirable version of the first, and where the second is a falling-away from the first. So, Evil is the fall from Good. Writing is the less good version of Speech. Cancer is where the “good” process of Health is replaced by mutant cell division.This is how we deconstruct cancer. The pharmakon of cancer. We cut it out and banish it, like the outsider that it is. But, the gift of chemotherapy is also, literally, a poison.

Last weekend a friend came to visit. He had recently joined Facebook after years of resistance. He came up with the perfect reason why social networks are a pharmakon – a risk and a benefit rolled into one – when he said his previous reason for not joining could be summed up in the sentence “You can document your life, I’m living mine”.

Last Friday felt like a graduation of sorts. I’m nearing the end of the radiotherapy (two more sessions, or “fractions” as they call them, next Monday and Tuesday). It’s been easy from a side effects point of view – there were none, but tough in the sense of having to make daily trips to the hospital at lunchtime each day for the past two weeks. On Friday I had my review with the very-believable Mr Wilson, my consultant. Told him I had little or no side effects from the radio. “There’s still time”, said he. “That’s good to know”, thought I. “Come back for another review in 4 weeks”, he said, “and we’ll do another scan in a few months”. What about my PICC line, I asked? “It can come out”, said he. “Do you want it out today?” He whisked me around to the Chemo Day Unit and injected me into their packed schedule. A short wait later, two minutes prep, and whoosh! 48cm of thin tubing leaves me for good. I felt not a thing, even though the end of that tube was deep in my chest, near my heart.

I also injected myself for the last time last night. No more Fragmin is required to thin the blood.

I feel free.

My rational brain tells me it’s a pause. That cat that is Cancer has me in his paws and the thrill I feel is only the temporary delusion of the mouse. He’s finished with me. I can go now! Dream on.

But today, nothing can get in the way of my Wunscherfüllung.

One of the nicer parts of spending time in hospital waiting areas is that you can read. In fairness, you are not kept waiting long so the book needs to be one that can be read a few pages at a time without it being a complete waste of time. The travel diary / inner monologue style of WG Sebald is perfect for that, and so I read “To the River” by Olivia Laing. She walks the length of the River Ouse in Sussex, mainly because it was the river where Virginia Woolf committed suicide. She waded in, stones in her pocket, and drowned. The house where she and husband Leopold Woolf lived in Bloomsbury had just been bombed in the Blitz, and she was feeling the onset of the fifth mental breakdown in her life. Her suicide note is lucid (“I am certain now that I am going mad again”) and sensitive to the pain she will leave in the ones left behind (“Everything has gone from me but the certainty of your goodness”). After she died, her husband returned to the bombed-out shell of the house in London and lived there for a while. Laurie Lee once wrote: “The half-finished buildings stood wet and empty, with a look of sudden death”, and that must be how Leopold  felt.

Maybe some day I’ll do something similar for the River Cam. Could include that story where Virginia Woolf and Rupert Brookes go skinny-dipping in Byron’s Pool one midnight. And it was Rupert Brookes who wrote that “The stream mysterious glides beneath, Green as a dream and deep as death.”

I seem to be channeling a lot of Virginia Woolf and thoughts about ghosts. I’m besotted with an album by a Scottish band called Bastard Mountain and in particular with the opening song Meadow Ghosts. Believe it or not, there are mountains in Scotland called The Bastard. The song is haunting with multi-layered hazy textures and I adore the scratchy vocals that seem to be wrung from the singers. “I sang to the night, and the night listened”.

I’m so in touch with my inner Goth.


It looks like I got what I wanted.

Nearly six months of chemo has taken the tumour down from 3.9 cm to 2.2 cm. That was the original size when it was just an ‘object of interest’ before it started to grow. On Friday I have an appointment for radiotherapy staging (they scan, they locate, they tattoo the target). They told me it would take around two weeks to arrange the radio so in the meantime would I care for another round of chemo & cetux the day after (my normal day). How could I refuse? So here I am with chemo cycle 9 and cetux cycle 7 swilling around in me.

I think they wanted to carry on with chemo but I expressed the preference for radio. It won’t be radiofrequency ablation because the tumour is too large. It will be ‘traditional’ blasts of x-rays at the tumour. If I heard right, twelve consecutive days (more or less) with a quick-ish zap each day. These smaller doses are called fractions. The fraction either destroys the DNA directly in the affected cells or it creates charged particles called free radicals that damage the DNA. I like to think of these free radicals as my liberation army. Come on, you Sandinistas 🙂

They still won’t tick the Curative box. It’s still Palliative for them. Prolong my life, etc.

But if I stop the chemo now, in the same number of months this tumour will return to its original size. I do not under-estimate the aggressive and severe nature of this metastasis, and I need to fight back with a stronger weapon. Which is where the radio comes in.

Radio doesn’t hurt when it is administered. But afterwards, the burnt or destroyed tissue can hurt plenty. There is also the risk of collateral damage to healthy tissue nearby, and the location is a node on the tube/pipe that leads into the lung mass. It’s a thin and complicated structure with lots of  pulmonary veins and arteries.

If you’re interested, it’s #10 on this map diagram:

But I feel the risk is calculated and correct. As Sean O’Faolain once said about Daniel O’Connell: “He imagined the future and the road appeared”.

So profound. Fuck it, let’s have another song:


Strike, dear mistress, and cure his heart. (John Cale live version)

If Lou Reed or John Cale were on chemo, they could sing they were tired, they were weary, they could sleep for a thousand years. Lou is gone now and never will have to, and I do hope John never has to.

Just back from chemo session #2. It went well, with no adverse effects. I’m feeling quite normal at the moment.

Yesterday, we had the Oncology clinic session. They told me I don’t have the K-RAS mutation so that means I can have the monoclonal antibody drug treatment (Cetuximab) I previously mentioned. This is a colourless liquid that is also administered as a drip into a vein (intravenous infusion). It will just be added to the four or five other bags of fluid that they drip into me over a few hours. Only difference is that it’s a weekly treatment and the FOLFIRI is bi-weekly.

Thinking about Lou Reed, I’ve always been very fond of the song “Kill Your Sons” from the ill-regarded Sally Can’t Dance album. I thought it’s a good song, but typical Lou Reed histrionics. Then you read in the guy’s obituary that his parents institutionalized him as a young man to ‘cure’ his homosexuality. Life is stranger and stronger than any fiction.

Right now I’m looking forward to a gig in London this Friday – William Fitzsimmons at the Garage. Bit of a nice dinner beforehand, it should be a good night out with B. I’ll add it to sitting in The Emirates watching Arsenal stuff Sunderland 4-1 as more evidence that I’m in control here, not Cancer. At least until it carries me off 😦