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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.

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.

A rough, rough month. Down and downer all the days as my tumours now start to take the upper hand. As Kafka once said about his TB: “My head and lungs have come to an agreement without my knowledge“.

I went for a regular bronchoscopy plus cryotherapy in early September. They injected the tracheal tumour four times but the bleeding was hard and they couldn’t see what they were doing very well. Each time it bleeds, they have to swap the needle for a suction and with adrenaline etc they get it under control and then try again. A slow process. They said it would need attention again but sooner than usual. In the end, they called me for a CT scan, and a week after for a meeting to discuss the results. I was sure the message would be that they’d done all they could, and must now stop. In fact, it was the opposite. They wanted to escalate it up to a more interventionist surgical procedure (a rigid bronchoscopy as opposed to the usual flexible bronchoscopy).

That went ahead this week. General anaesthetic required. Nonetheless, an early start at 7:30 meant I was back on ward by 10:00 and discharged by 4:00pm. The ‘new’ surgeon took on the trachea tumour and the before/after photos were amazing. From an angry bloody abrasion of white pinked with bloody veins to a smooth surface. It is a really good outcome, better than I dared expect. The ‘regular’ surgeon was then able to get around the corner to the bronchial tumour and he had a good go at that. They will return to it again. All of this is in the centre/left lung. On the right side, there is a central tumour that is now over 4cm in size. A grape is around 2cm; a plum is between 4-6cm. But that doesn’t cause any issue, so it is ignored for the present.

The tumerous lump pressing on my bladder was also highlighted from the CT scan, but I’ll have to get the Piss Factory involved on that one. It may mean getting the old catheter treatment again. Bah!

Weirdest of all are the stomach issues. I’ve had a generous lump of scar tissue near my solar plexus since the op in 2009. It just seems to be pressing more on me now. Stomach acid is a major issue and I haven’t had a meal in weeks. Yogurt, jelly, and milky cereal are my only respite. I’ve lost 3Kg in just a month. I keep mentioning it to doctors, but it isn’t on any current agenda for lung or urology, so I now have to push on the hospital until I get somewhere. It’s a full time job getting it all sorted.

It could be the scar tissue, but the other possibility is cytokines. Cancer causes the body to react as it would to say, the ‘flu. So I get these erratic surges in temperature and shaking etc. Cytokines are also good appetite suppressants.

When you have such localised problem areas it’s hard not to use the old cancer-as-battleground metaphor. Each one a front where the enemy must be confronted. I fell back on a book I first read years ago as a student – Susan Sontag’s “Illness as Metaphor“. She compares the C19th attitude towards TB with the C20th attitude towards Cancer. Cancer, unlike TB, is a disease which nobody has managed to glamourise. TB in its heyday had a much better image – pale, interesting, wan, sad, weary, melancholic, romantic. And yet, I remember walking as a child with my parents in the grounds of the local TB hospital. It was an old country house and estate that had been compulsorily acquired to open the sanatorium. It was spring, and the path was lined with daffodils. I was sternly commanded not to touch them, let alone pick them, in case they had been spat on. Now, I’m one of the unclean.

The two most common metaphors Sontag’s analysis uncovered are what she termed “violence” metaphors – fights, battles wars, etc, – and “journey” metaphors. Both bring problems. We’ve talked before about the patient shaming that is the baggage of the war metaphor. No matter how brave the soldier, they will become the fallen. We must accept their loss and carry on the fight. And those fat people who won’t change their lifestyle? Well, they may as well be the enemy within.

It’s all a load of tosh. If you want an analogy, your body is a million delicate instruments operating in tandem. That one or two goes out of sync should not be a surprise. We just need to know how and why, so a pill will correct it. Soon come!

I got to thinking about metaphors for cancer in general.

War

The big one. Trigger words are war, battle, fight, win/lose, struggle, body as battlefield. Other words to watch out for: blitz, air raid, all-clear. I tell you this, if it is a battle, then I’m the ravaged battlefield and not the General in command.

It can be a different type of war. The body is the internal battlefield, the homeland or home front. In this one, cancer is the spy, traitor, enemy within, or double agent. This one is a cold war.

Sometimes, you are up against a silent killer, an assassin. Cowardly cancer. It is your personal nemesis, stalking just you and ignoring all others. W.H. Auden said it first (“It’s like some hidden assassin Waiting to strike at you.“), but here is Harold Pinter (2002) also taking this view:

I need to see my tumour dead
A tumour which forgets to die
But plans to murder me instead.

It can get a tad existential when it turns out that the assassin is actually you, but a you that has turned on yourself in the ultimate act of betrayal.

Journey

Cancer is a road, path, or journey. You may cross the border into its domain, and you may even need the passport your diagnosis gives to allow you passage. Christopher Hitchens called that place “Tumorville“, as he was deported “from the country of the well across the stark frontier that marks off the land of malady.

You may meet fellow travellers. The journey through cancer treatment is the thing that teaches you how to live. One of the more negative implications of the journey metaphor is when people speak of the journey as pre-destined. This is the realm of “everything happens for a reason“. Before you know it, your cancer is a gift or talisman that only you can carry on your quest. The fuck it is. You’d dump it and go back to being a hovel-loving little Hobbit the first minute you had the choice.

Corruption or Rot

Cancer eats you from within. It rots down and eats away all that is healthy. Like a mould or fungus, it creeps across the space. It spreads and grows, like gangrene eats the flesh or canker takes the wood. It may, or may not be, your fault for being morally weak or sad or angry and allowing the rot to enter and take hold. The danger comes if you come to believe you can offset the rotten by imbibing only the pure and the good. Nothing wrong with assisting in early stage cannabidiol drug trials, but you can stick your coffee enemas up your a…, oh, wait a minute.

Alien Parasite

A variation on the above is that cancer is a parasite. Borrowing from the Alien movie, it is a foreign body that has taken hold of the host, and grows within. A dark and malignant “pregnancy” that proceeds by stealth. As J.M. Coetzee puts it: “Monstrous growths, misbirths: a sign that one is beyond one’s term.”  It creeps along the lymphatic system from node to node, like it’s hiding in the spaceship air ducts.

Plague

Or, a plague of locusts that plunders the once-healthy land. A wild whirlwind of destruction. Here is an example:

Kitty’s cancer is proving swift and ravenous, spreading like armies of insects eager to join together at a central hub. Tumours race through her, nesting in organs and slowly shutting them down. To them, nothing is inedible; metastases forming in bone and soft tissue, neoplasms leaving bad cells in their wake as they feast on the good. Paul Tomkins, The Girl On The Pier (2015)

Predator 

I’m guilty of using this one. “Cancer is the shadow of a shark under your raft” says I back in January. Another example I found recently is from Stephen J. Kudless: “It was a shark, her disease. It took her in many bites.”

Crash

The feeling of going through cancer is a long, drawn-out experience. Talking about his wife’s experience with breast cancer, Adrian Edmondson said: “It’s a long grind, like a slow car crash that will last five years and then, hopefully, we’ll get out.” That lack of control is often evident in metaphors such as cancer is like being on a carousel, forced to go around and around, with no way to get off.

I’m sure there are others, and it will keep me occupied looking for them. Sure, it’s something to do.

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

I’m still stuck in my différance somewhere between the delay of the past and the deferral of the future. Sometimes there seems to be an ocean of time ahead; sometimes it feels like the end-game has begun already. Bob Dylan says that “Time is an ocean. But it ends at the shore”. There (usually) seems to be an infinity of time left, but these infections are a reminder that maybe the shore is in sight. June was such a wipe-out that I wasn’t sure I would be up to going away on holiday this year. The long drive. constant fatigue, and unfamiliar environment was off-putting.

But, in July we travelled to the west of Wales and the Pembroke Coast. Rented a house in Fishguard Lower Town.

The old quay in Lower Town was the location chosen for the 1973 film adaptation of “Under Milk Wood” (you know, the one with the Richard Burton voice-over). You might have expected them to choose Laugharne, where Dylan Thomas lived, wrote in the Boathouse, and was buried. They didn’t see it as a match for the fictional village of Llarregub, and there was bugger all (sorry) that Laugharne could say or do about it.

Two weeks before we left for Wales I found an old copy of Caitlin Thomas’ book “Leftover Life to Kill”, which is an account of her trip to Italy four years after the death of Dylan in 1953. That seemed like a suitable book to read in Fishguard, but I have to admit after reading it that while she may emerge as a bone-fide bohemian, she did not seem to be a very nice person to know. And she had the opposite problem to me. I should write “Remaining Life Gone Missing”.

Dylan Thomas met Caitlin MacNamara in The Wheatsheaf pub off Oxford Street in April 1936. She was the youngest child  of Francis MacNamara, a poet/artist with Anglo-Irish roots in West Clare. Her father was a friend of Robert Gregory (son of Lady Gregory, patron of W.B. Yeats). Robert gave Francis the loan of Doolin House, and the Gregory family themselves de-camped for the summer from Coole to Mount Vernon, their house on the Flaggy shore. The MacNamaras also had a house in Ennistymon which they turned into the Falls Hotel. Francis was keen for interesting people to join him and his family in Ireland, and one visitor was the Welsh painter Augustus John. The family split when Caitlin was around four, and her mother took the four children to live with Augustus John and his large family at Alderney Manor in Dorset, a kind of 1920s hippy collective. Fast forward some time, and Caitlin was in a relationship with Augustus at the time she met Dylan in 1936. It was Augustus who made the introduction to Dylan in the London pub.

Later that year, Dylan was back in Swansea. His friend was planning to drive to Fishguard because he had a painting in an art exhibition that was to be judged by Augustus John. Caitlin and Augustus were both staying in Laugharne as guests of another writer. As Laugharne is around half-way on the road to Fishguard, they decided to invite themselves for a visit. All of them then proceeded to pub-crawl their way to Fishguard and back, in two cars. Tensions were high between Dylan and Augustus, and it ended with the latter punching the former to the floor. Dylan and Caitlin were married in 1937.

I was far more sober and peace-loving when making the same trip.

It is always good to make a break to the west coast. Any west coast. East Anglia is pretty, but the light is different. It always seems to be a pale silver-grey, like sun on a white calico sail-cloth and driftwood. The west is more fat yellow honeydew melon. It lingers and drips its juicy light down the chin of the horizon.

Not that the sun always shines in Pembrokeshire. But it did, sometimes. And at last I saw a dolphin in real life, after years of trying. Only the unicorn to go and I have a full list.

The saga of the low platelets continues. I probably knew I was on a mission of forlorn hope when I trekked off to Surrey for my latest chemo session last Tuesday. A few days before, my platelet count reached a new personal best – a low of 54. They took the blood sample around 9am, and by 11am the doctor was telling me to pack my bags and leave. It had soared to the dizzy height of 55.

So, that was that. Up at 4:50am and on a 6:15 train so that I could be there by 8:30. Out the door again with a three hour+ journey back home. I had hoped at least to hear the results of my CT scan from that previous week, but they only review those at their 1pm meeting, so the results were not available yet. My parting request was that they should phone me later that day when they knew.

I know the journey from Cambridge to Sutton very well indeed now. It started in the bleak morning darkness of January, and now the mornings shine with the jabbing finger of an April sunrise, the sun still low but now bright. I have two alternative routes out of London, depending on how fast I need to move. My preferred one is St Pancras to Sutton, which rumbles through the South London Hills (Tulse, Herne, Gypsy) that I have not set foot in since the 1980s. On the way back it passes though what used to be the terminus station for the old BedPan line. I remember that Pentonville Road station when it was new and modern. Now it is dilapidated with signs every few yards mandating “Do not alight here”. As if. They should have that as a sign over my hospital bed instead.

I like riding with the commuters. I do not mean to belittle their daily struggles, but I like to feel detached as the man with the death sentence striving to extend his time. We rumble through the City and it feels abandoned to me, even though it is crawling with people. But they are all silent. They bang rocks on their daily lives, trying to catch a fire. But the spark never takes.

My spark is feeble too. But, as Stevie Smith once wrote: “We carry our own wilderness with us”. My spark now is the buzzard that hunts near Baldock. Every trip, she is there hovering over the same field in the same gyratory like it alone knows where the gyres of air are found. She alone knows how to soar and hang; and is always in the right lane to suddenly swoop for a choice rodent or a rotund rabbit. We do not need to mention the earthworms that have to suffice when other prey is scarce.
NothingLasts4Eva
As the train rumbles back into Cambridge it passes a demolition site. I think it is Homerton College clearing a space for a new conference centre. What caught the eye was a piece of street art / graffiti on a small building. A stone shed. The tag was “Nothing Lasts 4eva”. It seemed like an apt message these past two months as I trundled out or back from cancer treatment. In more ways of meaning than one. I resolved to take a photograph, but I was lazy or underestimated the difficulty of shooting from a moving train. So, I missed a part of the building. Never mind. Next time. But, the next time it was gone. Reduced to just a pile of bricks. It had lived up to its own message. Now I have only an incomplete record of a transient thing.

Transience has always been a bit of an issue. There is for example that graffiti said to be carved into a wall (of an entrance, a bar, or a bedroom, depending on who you read) in Pompeii just as the volcanic ash was settling:

Nihil durare potest tempore perpetuo;
Cum bene sol nituit, redditur oceano,
Decrescit Phoebe, quae modo fuit,
Ventorum feritas saepe fit aura levis.

[“Nothing lasts forever; Once the sun has shone, it returns beneath the sea; The moon which was recently full, wanes; Love’s tempest often becomes a gentle breeze.”]

Apparently it is part of a poem by Catullus, probably written around 85-54 BC. It was discovered in 1913, but in the winter of 1915 there was a spell of very heavy rain and the wall collapsed, taking the message with it. Once again, there you have it.

So, take your portion of the timeshare of experience while you can, for tomorrow you are just the animated dust billowing in the streets of an abandoned city. I will follow my own advice, and make the best of the “controlled ruination” of what I have left.

Oh, and the CT results? It was a brief call. One word – “Stable”.

“I must confess I made a mess of what should be a small success”. From her new album “Sometimes I Sit And Think, And Sometimes I Just Think”. Apt title.

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;          

When I was a child I learned much from an encyclopedia called The Book of Life that my father bought as a weekly and collated part-by-part into plastic binders (ah, the sophistication of the 1970s). It had a mix of medical, social and psychological topics; and one in particular on Synaesthesia  caught my eye because it quoted the poem “Voyelles” (Vowels) written by Arthur Rimbaud in 1872. Synaesthesia  is when you think about one  sense in terms of another – in this case the association of colours with the letters that are vowels. “A noir, E blanc, I rouge, U vert, O bleu: voyelles“.  As Ludwig Wittgenstein once asked; “What color has the vowel A for you?’ So, for example, the letter U reminds Rimbaud of waves undulating in a green sea – “U, waves, divine shudderings of verdant seas”.

I’d never heard of Arthur Rimbaud, and it opened the flood-gates on a wonderful, sleazy river of Baudelaire, Verlaine, Rimbaud, Genet, Camus, Bresson, etc. Before I knew it I was a young teenager sitting in the local University’s film society watching films by Pier Paolo Pasolini. Good character-building stuff for an impressionable age. As Woody Allen said, the problem with childhood is that you were so young.  If you’d been older you could have handled it better.

Rimbaud, of course, only wrote poetry when he was a teenager and stopped by the time he was 21. He must have had a better education than me because he was a true enfant terrible. In the same year that he wrote Vowels he went slumming it to London with Paul Verlaine. After a stint in Bloomsbury they shacked up at 8 Royal College Street, on the border between St Pancras and Camden Town. Rimbaud was 18. It didn’t last, however, ending literally with a slap in the face with a wet fish. Verlaine went back to France and they met up shortly after in Belgium. That ended with an argument and a gunshot wound delivered by Verlaine to Rimbaud’s wrist. It was time to stop.

After he had finished with poetry, Rimbaud settled down to a life of what might be called colonial servitude. By the year of his death in 1891 he was working as a merchant in Aden, Yemen – although Abyssinia sounds much more poetic.He had a pain in his knee he thought was arthritis. It was mis-diagnosed and his leg was amputated. It was in fact Bone Cancer, and he dies at just 37.

So when I am reading Patti Smith’s “rimbaud dead” poem in 1978, I didn’t know then that “he is thirty seven. they cut off his leg. the syphilis oozes.” was wrong. Maybe she did better with “dream of rimbaud” which is after all just a fantasy “oh arthur arthur. we are in abyssinia aden. making love smoking cigarettes. we kiss. but it’s much more. azure.”

I’d like to be azure.

Around the time that Rimbaud was born, an Irish child was leaving Dublin in the company of his parents to start a new life in Canada. It was not long after the Famine and emigration was at a high point still. Many of those who left just after the Famine years (1845-46) ended up on the Quebec equivalent of Ellis Island. It was called Grosse Île, or Oileán na nGael. Canada was exporting timber to England back then and it was cheap to fill the holds of the cargo vessels with people on the return journey. Ships sailed out of the west of Ireland, heaving with their human ballast. It was cheaper to put the poor on the ship (£3) than pay for them to enter the workhouse (£7 per year). And out of sight is out of mind. Between the starvation before getting on the boat, and the conditions traveling in those summers, many developed “famine fever” on the journey. They had to be quarantined on the island as the boats entered the St Lawrence river. If a family had just one sick member, they usually all elected to remain there. Around 15,000 of them never got any further.

But David Nelligan, the Irish child in question, was traveling in 1856 and it was better then. He did well in Montreal, and got a good position in the Canadian Post Office. He met and married Emilie. Another Catholic, but she was French-Canadian, not Irish, and that was unusual then. On Christmas Eve in 1879 they had first child, a boy they named Emile Nelligan. As Emile grew up, he became distanced from his father and grew closer to his mother. His father did not allow French to be spoken in the house. Ironic, given that his surname was pronounced “Nellig-A'” by the locals. Like Rimbaud, Emile was a teenage prodigy as a poet. Although influenced by the likes of Rimbaud and Poe, he decided to write in French rather than English. As a lonely teenager, he was befriended by a priest (careful, there) who helped him to get his poetry published later in 1904. The priest was later caught up in a bit of a scandal himself when it was discovered he’d been in an affair with a woman.

I like the story about when, in 1899, there was an anti-drinking Prohibition movement pushed mainly by Anglo-Canadians. This managed to unite the normally disparate Irish and French-speaking Canadians in protest against the bill. A case of Catholic boozers, unite and fight. When Emile read his poem “Le Romance du Vin” to a public meeting the crowd cheered wildly and carried him home in triumph on their shoulders.

Rimbaud wrote “Le Bateau ivre” (The Drunken Boat). Nelligan wrote “La Vaisseau d’Or” (The Ship of Gold).  Both surrealist masterpieces.

But all this came to a sad end. Some say it was the duality of language and culture he had to endure all his life. Some way it was guilty tension between his sexuality and his religion. He was like the lyric in a Red House Painters song: “bruised internally, eternally”. Whatever the cause, Emile was committed by his family to a mental asylum. Today his condition would probably be called schizophrenia. He lived the rest of his life in two institutions, until he died in 1941.

He had a deficit of what medics call “eunoia”, which is the state of normal mental health. It is also the shortest word in the English language which contains all five vowels. The shortest French word to use all five vowels is “Oiseau” (bird). Go gently, Arthur and Emile, little birds of poetry.

nelligan-rimbaud-pasolini

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.