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

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

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

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

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

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

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

A 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.

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

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

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

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

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

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

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

Meanwhile, the Exterminating Angel smiles, and moves along.

I want to write my book. The one that has the cover blurb “When he beat cancer in 2016, he decided to share…”. But it looks unlikely.

I’m willing to try. The ‘running repairs’ on the lungs (as both I and the doctors now call them) carry on at 5-6 week intervals. Last time, the gauzy bandage they put over my eyes slipped and/or I wasn’t so sedated so I watched the screen and saw the camera navigate around the tubes of my lungs. It was fascinating. The scope would touch the side and trigger a little irritation, and a millisecond later I would give a little cough. Then the viscous tube would shudder and a little blood and mucus would surround the camera. It would be sucked away. I would suppress the urge to cough and we could then settle down to more probing and cutting and injecting. A fantastic voyage, indeed. As the camera was coming out, it went past two creamy-white blobs on the surface of my windpipe. I heard the surgeon say to his colleagues “there’s two more. we’ll get them next time”. Now I don’t even need the CT scan booked at the end of June. I know what they’ll find. Unless of course the lung guys get to the tumours first.

But these are just tinkerings with the problem. The real cure for cancer requires the miracle drug. And so to early drug trial phase 1 meeting I go. Yes, we have a candidate drug, they say. Something for someone like you who tells us he won’t take any chemotherapy in combination, no matter how potentially appealing the drug we offer.

It’s one of the tyrosine kinase inhibitor drugs. Yes, I know, but let me try to help. Tyrosine kinases are the chemicals that act like an on/off switch on proteins to trigger growth. These proteins are triggered by your genes. Very specific genes trigger very specific proteins and when we look at cancer cells we see too many of these proteins. So, if we could only stop them growing…

The drug being considered for me acts on a very small range of proteins and only around 5% of cancer patient populations have the ‘right’ sort of mutations. So, only a 1 in 20 chance that I’ll be one. The way they find out is to send a bit of my biopsy tissue from the great freezer to the laboratory of the drug company in the USA. They take a look and report back in a few weeks. As the OncDoc said, if it’s a match the red lights will start flashing and the klaxons will go off. Another way of saying: don’t build up your hopes.

He also said it was pretty much the last roll of the dice where drug trials were concerned, for the foreseeable future. They have nothing else.

Drugs that act on such specific proteins, explicitly detected in a person, are the epitome of personalised  medicine. Quite the opposite of the salted earth approach of chemotherapy. Maybe there are other drugs, in other trials, at other hospitals?

And there are other drugs, certainly. Some do the opposite to the inhibitors. They “take the brakes off” your body’s immune system and flood the place with good antibodies. Others act like vaccines and trigger the body to target cancer cells for destruction. Others are “Trojan horses” that get inside the cancer cells and cause them to die. All of it traces back to the discovery of T cells – the immune cells that kill cancer, in 1998.

I’ve had some of them (e.g. Cetuximab) already, with no great results. You read about others in the papers (“wonder drug”, “cure for cancer”). An example is Nivolumab, which was recently licensed in the UK for Kidney Cancer. Another one is Ipilimumab. It’s used to treat melanoma and is ‘only’ 4,000 times more expensive than gold.

But it’s a tough one. There has to be a UK trial. It has to be for your sort of cancer. They have conditions that you must meet (e.g. no more than 2 types of chemotherapy in your history). And, most stringent of all, that you have the right sort of wrong genes.

If you are not mindful, looking for a trial can be a hope-shredder.

No wonder that you turn to the bookstore for the manual to beat cancer. Just drink it, eat it, live it, think it, and all will be changed utterly. It’s like the “Scarborough Fair” ballad, but maybe more along the lines Parsley, Sage, Rosemary, and Dying.

It’s all down to our blinkered Western philosophy of medicine and the evil machinations of Big Pharma to keep the truth from us. Just consider the list of herbal remedies (e.g. garlic, mistletoe, hypericum, lingzhi mushrooms, milkvetch) that we could turn to instead. Look, the people of China and Vietnam even call the mushrooms “soul/spirit”. They must be good for you? Or, at least OK to take in parallel with traditional medicine?

Maybe not. One study in 2010 showed that a daily dose of St John’s Wort (hypericum) decreased levels of the active metabolite of Irinotecan (chemotherapy) by 42%.

Just think positive thoughts. Thinking positive affects the immune system in a good way so it’s just like taking all those monoclonal antibodies, only free and with no side effects.

Maybe not. Psychologists who have looked at the effects of optimism on immunologically affected diseases such as HIV and cancer have not been able to find a positive link. In fact, there is the disappointment hypothesis: “When things go wrong in a big way, the optimist may be particularly vulnerable.” (Tennen and Affleck, 1987).

I read one account of a “cancer survivor” who pushes the positive thoughts thing as the reason he was cured. He just mentions in passing where his brain tumor was located. He ignores the fact that it is possible to cure some brain tumours with surgery if (like his) they are located on the outside of the brain. Surely, it is his surgeon that deserves the credit?

I never forget my personal outcomes. Like 95% of people with colorectal cancers I had  adenocarcinomas. Like 50% of those patients I was diagnosed with liver metastases. But, only a small proportion of patients with liver metastases are candidates for surgery. I was one of those. Without it, I would have died. Probably sometime in 2010 or 2011.

“What a mean old bastard” you may by now be saying. He’s against a bit of yoga even though it may reduce fear and fatigue for cancer patients. I’m not and I’m certainly not advocating pessimism. I know the sense of helplessness that makes the self-help stuff so beguiling. But I worry about distractions that take us away to a crazy wild optimism (“I heard they had a cure for cancer”), the slow arbitrariness of drug approvals in cash-strapped health systems, and the politics of price controls for insanely-expensive pharmaceutical drugs.

Lighten up.

The worst of all is when someone with a marketing or business consultancy background goes through the cancer thing. They are compelled to tell the story and put it all inside some nice marketing framework. So, let’s go from genes to memes, just like Richard Dawkins did.

There may be someone out there starting his or her book on How to be a Cancer Survivor, so here is a handy list of memes that they could use: Cancer Dojo, Cancer Hacks, Cancer Keeper, Cancer Maven, Cancer Mojo, Cancer Monkey, Cancer Paradox, Cancer Principle, Cancer Senshi, Cancer Warcraft, Cancer Wars, Cancer Whisperer, and Cancer Wrangler. [Warning: some of these may already be in use in actual books, like.]

Others I have considered but cannot really recommend include: Dances With Cancer, The Lean Cancer Handbook, The 7 Habits of Highly Effective Cancer Survivors, Blue Ocean Cancer, Game of Cancer, Keep Calm and Have Cancer, Real Housewives of Cancer County, The Only Way Is Cancer, and CancerShifter.

Definitely stay away from Y U NO Beat Cancer?

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

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

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

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

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

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

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

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

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

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

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

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

Until then, I drift.

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.

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.

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.

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.