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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.

There must be something I can dream tonight” sings Patti Smith in “Elegie”, her tribute initially to the memory of Jimi Hendrix and then later on to the memories of everyone she has known who has died. All the friends who can’t be with her today.

The writers of sad and sombre elégies for those that have died from cancer have had a busy time of it in the past month or two. A roll call in the style of Patti would include: Lemmy, David Bowie, Alan Rickman, Terry Wogan, Umberto Eco. I lie in bed listening to the news of their deaths on Radio 4 and I wonder how others hear it when the word “cancer” gets mentioned. You wonder if other people try to decode the hidden messages: “following a short illness”, “long and brave struggle”, “short battle”, and so on. Whether they try to map those shorthand codes onto cancer types such as Liver or Pancreatic. Or is it all too much for them to cogitate? Just another reminder of the arbitrary cruelty. Another horror story of a fatal shark attack in what should have been a tropical paradise. I suspect as much.

“There must be something I can dream tonight”, Patti Smith may have thought when she sat down to write “M Train“, her book of memories that could be subtitled “Elegy in a New York Coffee Shop”. The dream she actually got was of a laconic cowboy who tells her that “It’s not so easy writing about nothing.” I think it is a sad but fascinating book. It’s haunted by death. I worry that she is depressed, but she writes ” I slip into a light but lingering malaise. Not depression, more like a fascination for melancholia.” I like the way her stories weave through things I recognise. I’ve only ever stayed in one hotel in Tokyo, and she writes about the Hotel Okura. She talks about the avenue of plane trees on Jesus Green, which is one of the prettiest views in Cambridge. And she reminds me that I really, really need to go visit Wittgenstein’s grave, given it is less than 1/2 a mile from where I now sit and write. One for the Spring.

Just like Elvis, I’ve found a new place to dwell. I’ve started to hang out at the Urology Clinic. Or, as I like to call it (in homage to Patti Smith), The Piss Factory. It may seem like an ungrateful name, but I do mean it kindly and everything we talk about and do there involves the pissing function.

Well, the boys in the Piss Factory they made a date for me at the end of January. They gave me a spinal anaesthetic so that I felt nothing from the waist down. Then they hollowed me out so that my piss could flow again. They call it TURP, I call it re:Boredom. They chipped away a few stones while they were in there. That infection wasn’t long putting down its crystalline roots. After, the surgeon said “those bits I took out from your prostate don’t look benign to me”. But only Pathology can tell.

It’s a bit bloody and messy this gouging of the prostate so they put the catheter back in after. Three days later I’m back at the Nurse-led clinic and they remove it. “Go drink”, I’m told, “piss twice to get rid of the blood, then report back”. I sit in the waiting room next to the water cooler and drink. Then drink some more. And some more. But I just sit there, no urge at all. I report back with my failure. Ultra-sound happens. “Not enough fluid”. “Go drink some more”. But even after more lunchtime drinks and a pint sized cup of coffee it’s not happening. I’m ready to give up and report back again. I’m on the couch. It’s so hot in here, hot like Sahara. I’m in the room and the nurse says “Try one more time” offering me the plastic beaker of forlorn effort. Then I feel this sensation, a little painful but not much, and suddenly my piss flows like the Tiber and carries with it this big wad of clotted blood. I fill the beaker of hope.

But I never know when to stop, do I? It trickles and drips constantly. I’m on the pads. I put in a mental order for a bulk shipment of the Big Boi Pee Pee Pants.

They send me home from the Piss Factory with the phone number of a medical devices company sales rep and a couple of spare pads. We stop at the supermarket chemist to buy some emergency supplies. Days pass, and I make contact with the sales rep. He has to come around, it’s a personalised measurement. He leaves me with a sample. I try it and it is good. I have to get a GP prescription. Best appointment offer is +3 weeks. I go in personally. Long story short, a kind receptionist takes my case on and later that day I have a prescription to collect. But the doctor has written me up for 4 pairs of underwear ranging from small through medium to large. What does she expect is going to happen to me? Can she even be trusted to buy her own knickers? The struggle begins again with the Pharmacy. If I am lucky, and roughly 4 weeks after the great De-catherisation, I may have ample supplies. It’s not dignified sharing this with you. Or over-sharing this with you, probably. But this is the grind that grinds you down when it should be all about Mindfulness and stuff, innit, and getting your head in the right place. As Virginia Woolf once said: “I meant to write about death, but life came breaking in as usual.

In between, there was a CT scan and the results were back this week. The lumps that are blocking my prostate are cancerous. While I was considering the curious case of the cancer in the meantime, I had been wondering if this would be a new primary cancer (Prostate) or just some new metastases from the original CRC. It’s the latter, which I suppose is some small consolation.

There is better news from Thoracic Park. The cryotherapy they did has significantly reduced the size of the lesion in the trachea, and the hoovering-out of the gunk from my bronchus has helped my lung upper left lobe to regain some of its function. It means I can breathe better and I’m coughing up a lot less blood. Excellent palliative stuff, will keep me going longer.

It’s like being in the Anglo-saxon world that Paul Kingsnorth writes about in “The Wake“. The Anglo-saxon word for the body is “Banhus“, which is translatable to “bone house” in modern English. What a truly fucked-up banhus I have. The Anglo-saxon word for piss is “Hland“. You’ve read this far, so I guess my hland is your hland. But best of all is “Dustsceawung“, which means to consider the melancholy that accompanies ruin and decay. The dust sadness.

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 the 1930s the novel written in Irish typically told the story of the noble Islandman. He stood resolute against the battering Atlantic storm, with a stout and honourable heart that dearly loved his God and his neighbours. Adversity was but a passing challenge to be scooped up in the fishing nets of his wisdom. Morality was simple. Books written “for children or nuns” indeed.

The genre was fair game for Flann O’Brien / Myles na gCopaleen in 1941 in “An Béal Bocht” (“The Poor Mouth”) which satirised the whole Gaeltacht existence thing. The non-hero is Bónapart Ó Cúnasa, and he is a pretty miserable, self-pitying individual, living in constant calamity. Misadventure falls on his misfortune. There is but a fine line between him and the family pig. He’s so feckless they had a “feck” mountain left over and they’ve had to recycle them into Irish comedy up to the present time, just to use them up. If it wasn’t for the mad schemes of his old man, the Old-Grey-Fellow, the family would be on hard times altogether. For feck sake (that’s another one).

Although published in 1941, The Poor Mouth didn’t appear in English until 1973. Just in time for the New Ireland. They’d sentenced me to twelve years of compulsory Irish language learning, so inevitably I became monoglot in English.

Another novel , “Cré na Cille” by Máirtín Ó Cadhain, appeared around the same time (in 1949) but has only just been translated by Alan Titley as “The Dirty Dust”. I urge you to read it. I’ll come back to the translation of the title another time, but a stab at pronouncing his name would be something like “Maur-cheen Oh Kyne”.

I never stood a chance with it being in the Irish, and myself the monoglot. But I was not going to pass on the translation of any book that was initially rejected because it was too “Joycean”.

You see, the whole thing takes place underground, in the dirty clay of a cemetery, and the novel is a dialogue between the dead. But maybe “dialogue” is too grand a word. It’s more of an ongoing shouting match as each dead voice struggles to be heard. And what do the dead talk about? Mostly about the petty squabbles they had going on up above. The dead can talk, and they never let up for a second. A few of them went to their death expecting a quiet time of it after, and they are especially aggrieved at the outcome.

It’s not an easy book to read. If it was the text of a play, you’d have Mercutio: or whatever next to the lines to help you follow. This is just a stream of unattributed babble where you have to pick out the speaker from the text. You either learn the characters or you may as well give up. But this has the effect of speeding up the flow, so it really is like listening to a room full of Irish people talking. We have to use phrases like “Listen to me now” or “Come here to me now” just to get a bit of attention for the next utterance, half-blind to the irony that these filler words add yet more noise and even less signal.

Each character in Cré na Cille has a distinctive voice. Catch-phrases, if you like. It makes me smile to remember my own family and the phrases they made their own. It would be like you’re in a pub in Galway and you’d run into the aunt and the uncle out for the night:

Is that yerself that’s in it? Nice mouth on ya for a pint of Guinness. Were you up the country saving the hay? Ach, no better man! Who’s yer man abroad there? Nice mouth on him for a Mercedes and the trousers hanging off him. Far from class he was reared. Sure, fuck the begrudgers. A decent skin, all the same. No better man! Are ya coddin’ me? Wasn’t it him that was after telling me his self? Some cute hoor right enough. No better man, me arse! Fair fucks to him though all the same. No better man! You’re grand. Will ya take another one? Good on ya, sure you might as well. No better man!

The great thing about all of this and the encounter in general is that you would not have to utter a single word. It would all just stream around you whether you wanted it to or not. Good times.

The bitter irony of the ability of the dead to speak is that I myself can barely talk. I’m as hoarse as a crow that’s been eating sawdust in a desert. I’m the raven in Macbeth that can’t even portend the death of Duncan. That’s how hoarse I am. It started just after the chemo in cycle 3 and it has lasted for weeks now. The doctor said it was either an infection (unlikely, no temperature, etc.) or it was a tumour pressing on a nerve. Not so good, that second option. Think on the irony if these tumours are being kept stable in size, but one of them still finds a way to wreak havoc. The doctor gave me an apologetic smile and a prescription for some antibiotics. The drugs did not work.

On the strength of a useful suggestion I started to think of a third reason for the hoarseness. Maybe it’s the chemo? Could Carboplatin cause hoarseness or changing voice? That’s a search phrase right there if ever there was one. There are several mentions of the possibility in the results, but if you go by the numbers then the occurrence rate is something like 0.002%. Not the most heartening of statistics.

I went back on May 14 for what was called a “discontinuation” meeting. It just means it is coming to the time they will stop me on the study drug trial, but it does sound like a Joy Division song – when the procession moves on and the shouting is over. Here are the young men, indeed, with a weight on their shoulders.

It was a bit of a farce. Yet another doctor I’ve never spoken to before, glancing at my notes like a cheat sheet as we spoke. After he got it wrong on the number of cycles and the name of  the drug trial I’m on, I gave up inside. It can all be a little tiresome some times, when you think that I’m meant to be their guinea pig on the important research that will Cure Cancer. At least I had a CT scan the same day, which justifies the journey, and he made the useful suggestion that they should scan a little more intently around the throat region. So it came to pass, and I should know the results next week.

Anyway, I’m finally in Cycle 4 (the last cycle) of my drug trial treatment. Days I feel the “chemo-wipe” wash over me – waves of fatigue your worst feelings of tiredness, listlessness, and weariness ever, all coming together at once. Make my bed I’ve a pain in me head and I want to lie down. But there’s an Irish proverb:

An rud nach leigheasann im nó uisce beatha, níl leigheas air.
(If butter or whiskey won’t cure you, there’s no cure for it)

So, bring on the butter and the whiskey, and hope in the cure for the croak. I’m not quite ready for that old sweet ground, where so many weary souls take their rest.

It is possible to miss a field like an old friend.

When I was a child in Ireland, with the summer coming in, we’d be encouraged to make a trek every evening in May out to a Marian Grotto at a country church two miles or so from home. These are shrines found in the churchyard, usually with a set of steps leading up to a statue of the Virgin housed in a small cave structure – hence the grotto. The idea was to recite the rosary bit by bit as you shuffle up the steps on your knees. I think you do a bit more of it each day, culminating in the full twenty decades or whatever by the end of the month. We laid our ears to furious prayers, but I was never that big on the detail.

For me, it was more about the journey there and never the destination.

Out over the back wall, across the last remaining fields on the edge of a council estate, until you reached a couple of country roads. Down along one of them for a few hundred yards, then over a low wall into a karst region. You may need reminding, but a karst is an area of exposed limestone slabs. The rain breaks down the surface into fissures until it looks like block paving laid by a giant. In every crack and crevice, dried leaves slowly turn to soil and support a little ecosystem of alpine plants. The slabs along the limestone top are known as Clints, and the fissures are called Grikes. They are the ghosts of little sea-creatures, glistening halftone grey from the graves they left in warm seas, 340 million years ago.

The most famous one is of course The Burren in Clare, but smaller karstic terrains are not uncommon across South Galway. One of my favourite places in Yorkshire is Malham Cove, and that is another example. Apart from these few places, there is very little limestone pavement found anywhere in the world.

The area I recall was nothing of the Burren scale. We’re talking around 1 square mile. I assume it was owned by somebody (isn’t everything?) but because it was so rocky I cannot recall any farm use. Not even a sheep. It wasn’t flat like the Burren. There was a mini-scale landscape of little cliffs and valleys. The deepest would be maybe twenty feet down. Like most limestone pavement, it was thinly vegetated but it supported quite a few small trees and bushes. I can be very precise in one recollection because it was our number-one destination for gathering hazelnuts in the autumn. And so many small birds flitted through those branches. I knew nothing about birds, but what I do know is that the yellowhammers seemed to be everywhere then, and they are nowhere now.

The poor old yellowhammer. It’s said to have made a pact with the devil. The eggs it lays have an intricate pattern that looks like writing, and said to conceal messages of harm and evil. Maybe they carried a lark-scribbled message of impending demise. Éiníní, codalaígí. Little birds, little birds, sleep, sleep.

The path to the grotto was not a straight one. You had to weave in a bend every few hundred yards to navigate the next bit. It was quite the adventure for small boys.

They would call it “undeveloped” in a property context. It wasn’t pristine. There was an Electricity sub-station behind large fences on the corner of the small road. There was a small and isolated country shop and butchers. But it was very much on the edge of town.

The little country road itself is worth a mention – it is called Bóthar Na Mine in Irish. That translates as The Maize Road –  mine buí is yellow corn or maize. During the Famine, maize was imported to make up for the potato disaster. Because it was too much to just give food to the starving people, it was customary to build “famine roads” as relief projects. Work through your hunger, get the corn. Most of these roads go nowhere, like the morality behind them.

Sometime in the early 1980s they tore it all away. I thought about including a screen grab from Google to show you what it was replaced with, but it is too depressing. Think car parks, small industrial units, and warehouses.

I suppose this is the customary point at which to be angry, to lament the passing of irreplaceable natural beauty. To mock the short-term views of local politicians who destroy one day, then apply for restoration grants the next.

But my reminisce is more about the inevitability of change.

Take the very fact that we were there in that place, in the first instance. It used to be parkland. A country estate with a fine view of the sea (and from hence it got its name). A fine country house built by successful merchants during the eighteenth century. Men who had grown rich from the abundant wine trade with Spain and Portugal. There is a good chance they also imported the yellow maize that paid for the road, given they made a donation of £1,000 in 1847 to fund ships carrying foodstuffs.

The family sold the house to a factory owner in 1953, and the local government saw a chance to build housing alongside. They tendered for the erection of over 250 houses, with a view to providing homes for people moving out from the city centre. They all moved in at more or less the same time, were all more or less adults in their 20-30s. Child-bearing, and Catholic, we were soon at least over a thousand children growing up on a council estate. Everything came in waves. The water pipes made of lead having to be replaced. The old people reaching their ends.

They might romanticise it now, but then it had nothing. They’d build a playground, and it was littered with broken glass a week later.

I remember it for the crows. There were hooded crows, closely related to the carrion crow and who also feed on dead animals. The only dead animals we had were in dustbins, but they seemed to cope well. They liked to move in flocks on the green. There were rooks, who liked to roost in the old trees behind the country house / factory. They kept themselves more separate, like a mafia gang you knew existed, but did not always encounter. After all, a group of crows is called a Murder.

None of us were eagles. We all just lived in the sinkhole of a corporation estate. If they wanted to name it again, they could call it Poll Na Préachán – the hole of the Crows.

 

I guess I saw this one coming – was sent home today without receiving a dose of chemo because my blood platelet count was too low.

Digging out my old posts from December 2009 / January 2010 reminded me they measure platelets as ‘bits’ per cubic millimeter. The normal, healthy person has between 150,000 and 450,000, which is simplified to a platelet count between 150 to 450. They will not administer chemo if it drops below 100. When they tested last Thursday, it was 91. But the hope / expectation was that it would creep upwards between then and today (Monday).

Instead, it dropped to 66. That’s a personal best (PB) for me. Back in the day, the lowest I got to was 78. It would be a very good idea if I did not cut myself shaving at the moment. It might bleed for rather a long time. As I said back then, below 50 and you don’t need a wound. You bleed spontaneously.

The cause of the low platelet count is of course the chemo received, but also (presumably) interaction with the AZD6738. Even though I feel no adverse effects, something is going on in there.

They invited me back on Thursday to take another test. Seemed a bit of a forlorn hope, to get to 100 from 66 in four days. And a journey of 3+ hours there, 3+ hours back. We settled on the idea that I go instead to the local hospital and ask them to do it. *Walks in off street, approaches the reception desk. “Excuse me, would you take some blood from me please?”*

I also found out over the weekend (cheers, Google) that Fragmin can also decrease the platelet count. Apparently, drop below 50 and you have to come off it anyway. That’s the end of me taking that, then. Wish they’d thought that one through earlier and suggested stopping it to me, before I did the search for them.

It does feel so very, very deja vu. I’m stuck in the Evernow. We are on repeat.

Fuck me, but I’m bored of this cancer now.

I’m bored of looking at the charity posters that invite me to join the fight against cancer and the enemy within. Over forty years ago, none less than Richard Nixon  declared the war on cancer. He took a little time off from bombing Vietnam (and cutting medical research budgets, including cancer research) for that one.

Pacifism has always made sense to me. If war is the answer, it must be a stupid question, and all that. Since I became a cancer thingie, my urge not to hurt or kill anything has gone up even more. Atrocities in war zones now depress me more than ever. Those people don’t have to die, yet they are dead.

So why would I want to fight a war against anything, cancer included? It offends me. I’m as offended as someone who goes on Twitter to complain that Facebook is down and YouTube has blocked a video, and that is Mighty Offended Indeed.

Cancer is not within me. Cancer is me. Just as chemo (my friend) is really my destroying angel, killing all that it touches. Cancer is not my enemy. Cancer, who knows where you end and I begin? Cancer might well be quoting Shakespeare at me: “Then hate me when thou wilt; if ever, now“. Do it now. But, I can’t.

I’m willing to take the time to help find out more about drugs that might cure cancer. But I can do it without the war metaphors for cancer. I may have the scars, but I’m not some foot soldier fighting on anyone’s front line, aiming at the unseen enemy.

If, dearest cancer research fundraiser, you make us your soldiers in the war on cancer, then what are we to be called when we fail?

Let me tell you about the “war” that we’ve fought for over 40 years now. The big “battles” we’ve won have come from better screening and prevention, and not from any arms race developing better, more potent drugs.

I’ve spoken before about the essay in “Sightlines” by Kathleen Jamie – the one in which she describes the highly-magnified pathological images from a 10-inch sample of cancerous colon. At that scale, they are like imaginary landscapes. A map of rivers and deltas; inlets and peaks. She also talks about her scar ( a consequence of her breast cancer) and coins a new word “Frissure“. It’s a portmanteau of “frisson” and “fissure”. The fissure (cuts or tears to the skin) part is easy. The frisson (shiver or shudder) part comes from the shock of a scar on naked skin.

And yet, still, there is beauty within. Even as you shudder.

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”.

The Germans have two words for experience: “Erlebnis” and “Erfahrung“.

An erlebnis is a specific “life-event”. So, this week I went for the first of my six chemo sessions and that was therefore one of those. But Erfahrung has to do with the accumulated experience of life. You can have lots of life-events and learn nothing from them. Or, you may amass your Erfahrung.

First rule of Chemo Club is not that you don’t talk about Chemo Club. It is rather that your first experience of chemo club may bear no resemblance to your fourth or seventh experience. So, this is my first report.

It wasn’t too bad, at all.

First point of note: no neuropathy. That rotten tingling that turns into a more intense sensation that flows like acid through your veins: nada. To make up for it I have something called a PICC line which is a thin tube that goes into my bicep and runs along a vein for 48cm to somewhere near my heart. It is used to insert the fluids. To infuse me. I’m convinced that I can feel the spot where it ends.

Some nausea, but then my old friend the Dom Perignon sound-alike (Domperidone) is the cure for that. They say that I will have hair loss and a dose of the shits to look forward to. We shall see, but not so far. The fatigue is there. I suppose the last time I was working from home so it was easier to manage.

I am upbeat about this. Make no mistake, however, this chemo stuff is like a poison and the shock of it to your body cannot be played down. Chemo feels like Baudelaire’s “Les Fleurs du mal” spreading their dark stems and tentacles along the veins of your body.

Là, tout n’est qu’ordre et beauté,
Luxe, calme, et volupté.

(There all is order, naught amiss:
Comfort and beauty, calm and bliss.)
–“Invitation to the Voyage”, by Charles Baudelaire

One of the key critiques of Baudelaire was written by a German literary critic, philosopher, and essayist called Walter Benjamin. He was a German Jew who became a Marxist in the 1930s under the influence of Bertolt Brecht. His writing was extremely broad. This is a man who wrote a thousand-page work (unfinished) spanning thirteen years of his life, about the covered-passage shopping arcades of Paris. One of his quotes about Baudelaire is that his poetry is “grounded in an experience (Erfahrung) for which exposure to shock (Chockerlebnis) has become the norm”. I think it means that Baudelaire’s poetry is a shock experience on which Modernism is borne. I guess Chemo is a chockerlebnis too.

Walter Benjamin’s final years are a sad story. In 1937, he was living in Paris. Back in Germany, the Nazis declared all German Jews were stripped of their German citizenship. As persons with no state, Benjamin and other German Jews were arrested by the French government and put in a concentration camp for three months in Burgundy. Back in Paris during 1940, the German army were defeating the French. One day before the Nazis entered Paris (14 June 1940), he and his sister fled the city. They went to Lourdes (quelle ironie). By August, he was in possession of a US travel visa negotiated for him by friends and colleagues in America. But, he still had to get out. His plan was to get to the States from neutral Portugal. To do that, he had to travel through the also-neutral-but-fascist Spain, then under the rule of Franco. He made it across the French-Spanish border to the coastal town of Portbou, in Catalonia.

However, the instruction came from the Franco government that all visas were cancelled and refugees were to be returned to France. He kept going until the night of 25 September 1940, and then he killed himself with an overdose of morphine tablets. The novelist Arthur Koestler, author of Darkness at Noon, was in the same group and took the same morphine tablets, but he survived.

That is well proper Erfahrung. What I experience is but a pin-prick.

King Creosote & Jon Hopkins – Aurora Boring Alias

It’s been a sad couple of months in many ways. Lots of death haunts the house around here.

First it was the poor old cat.

Then it was the Father-in-law.

In both cases lived to a good age, had a very peaceful end, the way we’d all want to go, and similar sentiments.

The frank admission is that I miss the cat – he was a willing confidante when I was anxious about my cancer operation in 2009. We’d sit in the pale sun of a day and he’d be very patient with me pouring out my concerns, as long as I kept brushing his fur. He didn’t like you to fuss over him. Very independent and easy-going as long as things were going the way he wanted them. Liked his food and his comfort. There’s a beautiful King Creosote song called “Aurora Boring Alias” where he talks about a man, his cat and the man’s partner. How they neither of them (man and cat) like her fussing over them. How the cat is happier in a mad half-hour than in the half-life of his indoor basket world. And yes, he says, I’m aware it’s me I describe in code.

I made a suggestion that it would be nice to have a poem read in Irish at my father-in-law’s funeral. Despite a life spent in England he was very keen on keeping up the Irish connection. Avid reader of the Irish Post, followed the national side in sports, no friend of perfidious Albion, etc. A good idea on my part that would have been brilliant if I’d had even half a clue what poem I had in mind. “Great” came the reply to my suggestion,  “what poem were you thinking of?”

After a bit of a search I came across a poem called “Faoiseamh a Gheobhadsa” by Máirtín Ó Direáin. He had a very similar story to many Irish writers – came from the country, worked for the Civil Service in Dublin for his whole working life (roughly 1928 to his retirement in 1975), and wrote poetry on the side. The civil service was a reliable option that gave security. But living in Dublin gave him no joy, and the poem is about he longed to get back to the small island off the west coast that was his real home.

Faoiseamh” is a peculiar word in Irish. Mostly, the poem’s title is translated as “I Would Find Peace”. But the literal translation of peace is “síochána“, which is why the Irish police are guardians of the peace – Garda Síochána. You also see it translated as “A Rest I Will Get”, but again rest is “chuid“. if you wanted to say take your rest it could be “Tog do chuid“. If it was a break he wanted, then that would be “sos“. If he wanted some space, that would be “spás“. The closer translation of the word is probably “relief”, especially in the context of release from pain or anxiety. The verb isn’t all that straightforward either. My grammar knowledge is old history now, but I think they’d call this tense the conditional mood as in “I would get”.

I suppose it’s very similar to Yeats’ poem The Lake Isle of Innisfree in which he too wants to escape to a small island. Because: “And I shall have some peace there, for peace comes dropping slow”. Peace comes dropping slow was a phrase often used by Jackie Leven around his music, and it’s a beautiful one.

I hope none of this makes me sound like I have a clue when it comes to the Irish. I’m more in touch with Kant than the Caint. I had a go at reading the poem aloud to see what my Irish pronunciation was like. Then I listened to a recording of O’Direain reading it himself. It makes me sound like a guy with an English accent trying to read a poem in Irish. But then it was like that even when I lived in Galway and the lads would be in from the Aran islands – they had an accent that was as thick as a bog hole in winter. We were very sophisticated altogether by comparison, don’cha know.

So this poem is about finding space/peace and a break from the milling crowds of the city. It’s not even a definite thing. If he had a go at doing it, then there’s a chance that he would get some relief.

That’s the human condition. I’ll take the mouser with me. He’d like that.

In 1945, JRR Tolkien became Professor of English Literature at Merton College in Oxford. He’d published The Hobbit in 1937, before the outbreak of WW2, and The Lord of The Rings appeared in 1954-55. In 1949, Tolkien started a ten-year stint as an external examiner for the National University of Ireland, where he set exam questions for students in Dublin (UCD) and Galway (UCG). While he was staying in Galway, he took several trips to the Burren and Connemara. Tolkien was no fan of modernity and machinery, and preferred walking or bicycling for his explorations. I like the story which says he’d walk for miles until tired, then just lie down to  take a nap before getting up to carry on.

There’s a theory that Tolkien borrowed the landscape (of the Burren in particular) as the inspiration for the Misty Mountains in LOTR. The Burren Tolkien Society would add that there’s a cave there called Poll na gColm (Cave of the Rock Dove) and gColm is pronounced as “Gollum”.  The only ‘slight’ flaw in the argument is that he wrote the book in 1937-49, before he actually saw the place. There are some tough hill climbs in the Burren, but a Mount Doom? Maybe not. But there’s a ‘middle Earth-ness’ about the West of Ireland, so let’s go with it for now.

If Tolkien had set out one day on an unexpected journey through Connemara, I wondered if he might possibly have bumped into that other English academic who stayed thereabouts – Ludwig Wittgenstein.

Unfortunately for my tale, Wittgenstein had his stint in Connemara in 1948, just a year before Tolkien arrived. He was in Ireland from April to October and had retreated west to find silence to work on his writing. As Tim Robinson reminds us, he described Connemara as “the last pool of darkness in Europe”. He stayed in a cottage belonging to a friend called Maurice O’Connor-Drury (Con Drury to his friends) on the southern side of Killary Harbour. When he looked out his front door, he saw something like this:

Rosro-view

He had a local called Tommy Mulkerrins as a servant there, and one of Tommy’s jobs practically every day was to gather a bunch of rejected papers and burn them in the yard. Wittgenstein went back to Vienna at the end of that year, then to America, and returned to Cambridge where he died from prostrate cancer in April 1951.

Maybe these two Oxbridge dons met in England, or at least knew of the other, but it would have been a magical story if the hobbitesque Tolkien rolled up unannounced one day at the door of Rosro cottage to call upon the ascetic Wittgenstein.

How would they have got on? Tolkien’s first job after leaving the Army in WW1 was working on the Oxford English Dictionary, where he worked only on words of Germanic origin beginning with “W”. And he’s a fan of constructed languages (the books were mainly backdrops to allow him to use them). On the other hand, Wittgenstein is aware of “the danger of words” and the “bewitching of our minds by means of language”. Would he have been a Sauron to poor old Frodo Tolkien?

One Does Not Simply Walk into Meaning, he might have muttered, cruelly.

I love the fact that one of the last things Wittgenstein wrote was:

“I cannot seriously suppose that I am at this moment dreaming. Someone who, dreaming, says “I am dreaming”, even if he speaks audibly in doing so, is no more right than if he said in his dream “it is raining”, while it was in fact raining. Even if his dream were actually connected with the noise of the rain.”

I wonder what it was about Killary Harbour that made him dream about rain?