A lot has happened since my last post. Nothing has happened since my last post. I live in a Beckettian world now. I feel like I have a lot to say, but nothing at all to report.

So, I saw Oncology on November 21. The purpose of the meeting was to review the results of a CT scan done November 15 and agree next steps avec Mon OncDoc. The waiting area was the usual gloom-ridden pit of human despair and misery. You can always tell the newcomers because they clutch the shiny blue plastic wallet they give you for your little bits and pieces. After a few weeks you have enough paper to fill many over, so it gets dumped at home. There must be a lot of sweaty palms placed on those blue wallets, and you’d like to share some experience with the clutchers. But, think about starting a conversation about your life with your fellow passengers on the London Underground. Now, double the cringe. It’s a private, silent world in the Oncology waiting area.

They were running quite late, but nothing unusual in that and I budget many hours more than it should require anyway. It was about an hour late when I got the call to one of the little rooms backstage that they use for consultations. They asked if it was OK if this nurse and that nurse sat in to listen. Fine, I muttered, but where is me consultant? Ce n’est pas Mon OncDoc. It was the same doctor I met after my infection episode. They let me out on a Saturday provided I came back on the Monday to review my blood results. I got there on the Monday, but the blood results were not back from the lab. A wasted journey for a tired body.

Now, today here she is starting our little chat with the news that the CT scan results are not back yet. I felt sorry for her. She must be the doctor in sole charge of late and missing information, the fact of which has to be communicated to the patient. I’m sure her actual job title is snappier than that, but she needs to take a hard look at the delegated jobs she is getting from Mon OncDoc. She was willing to have a go, and we could have a little hypothetical talk about might be, and what could become. I explained that, after all these tests, I could probably guess the results within a reasonable degree of accuracy. This meeting, I said, is more about the continuation of my care plan review with one who knows the history, and to obtain answers to certain questions about treatment options. So, I asked to be returned to the waiting area and recalled when Mon OncDoc was available, no matter how long that took. Not the best thing they’d heard that day, but my request was granted. Quite stressful, nevertheless.

When I finally did see Mon OncDoc, I said I was disappointed that the results were late but no matter, here is my guess at what they were likely to be. We crossed swords on some of my terminology (he didn’t agree that the tumours in my pelvic area were “rampant”, for example). But I pressed on. What I really want, I said, are answers to three questions. One, should I be more concerned about the recurrence of tumours in my pelvis rather than the secondary metastases in my lungs? (Subtext: is primary cancer location more fearsome than secondary?). He told me that the lung tumours were the priority. I’m sad to say he resorted to the war metaphor to explain why :-). Two, if in 2009 the preferred plan was surgical removal of the colorectal tumours, why not do another resection down there now? He said no-one would ever agree to that. He didn’t spell it out, but I’m pretty sure the cost/risk of surgery is out-weighed by any benefits to a patient with multiple site malignancies.

So, question three, given your answer to question two. What about this drug “Lonsurf” that I’m reading about in the Bowel cancer forums? It’s a third line treatment. I tick all the boxes. Would you consider it for me? He cogitated, but said “yes” reasonably quickly. He expressed his doubts about the drug efficacy, but thought it worth trying. Now, a “yes” means that he will submit an application. This is one of those drugs that are not cheap, and NICE needs to approve each case. I would come back on December 12 to hear the outcome.

After the drama, it was time for a quiet expedition to Thoracic Park on November 28 for another round of cryotherapy. There is an especially worrying tumour in the left bronchus that could shut down the whole left airway, and that would be the end of the rest of my left lung function. They had a good old go at that, and it was fun to watch the monitor as they ‘looped’ the tumour with what I guess is a very thin wire. Tighten the loop, and whoosh! A proper horrorshow, my droogs, with plenty of the old krovvy on show, if you pony me.

There was still time too for a trip to the Piss Factory. My colorectal specialist nurse fixed me up an appointment with her counterpart in urology. She changed all the pipes for a fresh set. I asked her to tell me the part number for the bags so that I could get my GP to prescribe. But, she went one better and phoned the medical supplies company to register me and arrange it all for home delivery. What a champion!

She wasn’t long on the phone, but what struck me was that here was a medical professional talking *about* me. Usually, we’re talking to each other. In answer to one question, she replied “He has cancer”. This is the weird thing. I sat four feet away and thought: “Do I?” It’s only been eight years for me to get used to the idea. But I was still thinking “Is that true?”

Later the same day I was at a techie event to do with Virtual Reality. I was mainly there because they followed it with a showing of the movie “Notes on Blindness” that I have been desperately trying to see. One of the talks on VR said their big problem was creating and maintaining what they call “Presence”. This is where they design the software and headsets such that your brain accepts the experience as feeling real, even if you’re know you are actually inside a game. For a moment there, in that urology consulting room, I had lost my sense of cancer presence.

But, as Nick Cave says, the tree don’t care what the little bird sings. It’s there. This not The Matrix.

So, this drug Lonsurf, what’s that all about. It’s another of those ‘double whammy’ combinations of two compounds. The first, called TFD, gets into the DNA and kills the cells. The second, called TPI, stops cell re-growth. It’s not a trial drug. It passed all the Phase 3 tests and it proved to be “fairly well tolerated” and “elicited an immune response in some patients”. It’s an oral therapy, so no hanging around for hours hooked up to a drip.  I’ll probably start on 3 cycles of 28 days each.

Why did I ask to do it? Let me borrow the answer to that from another cancer blog: “I got very depressed by the idea that I had to choose between nothing and chemotherapy”. What do I expect from it? For all these ‘wonder drugs’ that ‘cure cancer’, I get the impression there is no impact whatsoever on 80% of the people who take the drug. Of the remainder, 18-19% might get a temporary pause in disease progression, as if the cancer was figuring out this new variable. That leaves 1-2% who are the ‘super achievers’. They get the headlines.

When I say there is no impact on 80% of people, I don’t mean the side effects. There is a 100% chance that everyone will get some of those. The most likely is rapid decline in white blood cell and/or platelet count. Ulcers and skin reactions are also possible. But I’m willing to accept that.

On the subject of miracle drugs, the DeathLit Cafe had a new customer, but unfortunately he was only able to linger for a short while. The journalist AA Gill died only three weeks after dropping off his first dispatch. It was good copy. He had the “full English” of cancers, he wrote, which invited a visceral imagining of tainted kidney and liver pushed across a breakfast plate of foul malignancy. In fact, he had lung cancer that spread to his neck and pancreas. It sounds like it was a pancreatic tumour that finally did for him.

It’s a shame such a talented polemicist had such a short time to hone his experience and get down his insightful views on our very pet topic, Living With Cancer. The more so, because his fame would provide a powerful platform for any opinions that he did get time to share. His opinion was that a drug called Nivolumab would be his life-saver, if only the bad old NHS was not withholding it from him. I’m afraid this is just the optimism of a neophyte. He did in fact get access to the drug, but it made no difference.

The death list from 2016 grew a bit longer. Not a popular year, 2016. And yet, it occurred to me (too late as usual) that it would have been an awfully handy year to die. For decades to come, people could say about me: “Yes I remember the year he went. Same year as Bowie and Leonard Cohen and a bunch of other greats. Not that he was in the same league, of course, but it was the same year”. Btw I put the last bit as a nod to modesty. You don’t have to use that bit if you think it makes the paragraph too long :-).

Still, no use crying over missed hearses.

For a while there, it was a line from a Tom Murphy novel: “Bejaysus, ’tis worse things are improving“.  The infection took hard on me after the operation in late September and by the middle of October I had to seek help. I was admitted into hospital again. “Cancer fever“, they said. There was a backup of urine and they had to catheter again. For many days it flowed red with blood, which they put down to a tumour penetrating into the bladder wall and bleeding into there. After three days, and a lot of antibiotics, my creatine levels were normal enough to get a discharge home. I’d become convinced there was something tumerous pressing on my stomach, but it was more likely the unhappy alliance of the bladder and the lung tumours working together.

A couple more days lying in bed at home, and a class of recovery started to come upon me. The cancer fever dream lifted, and I was alive again.

That was good enough to jump in the car and head for Aldeburgh on the coast. Well, I’m all revved up and ready, baby, as Lene Lovich once said. Lots of sea and shingle. It was an impressionist painting of pale blue sea/sky abutting onto beige pebbles. In the stillness of the dawn early light you could be forgiven for forgetting the current madness of this world. It is of course Benjamin Britten / Peter Grimes territory, hence the title. Managed to get in some long walks, spotting some good birds along the way. How many more Autumns?

Then home again for another day trip to Thoracic Park. More cameras in the lungs. They say the second tumour in the bronchus is growing. There is talk of more radical intervention to prevent it from closing down the left lung. Radiotherapy or stents, perhaps. Discussions about me will be had. I will be told.

At the end of November I will also meet with Oncology. It will be an interesting conversation. I have questions to ask about pelvic surgery and/or  treatment with a newly-approved drug for colorectal metastatic cancers.

In the meantime, I work. I make lists about things that need to be done. No point in having time to prepare if you don’t use it. I laugh at marketing emails from my bank: “Pushed for time, Paul?“. Just a bit, NatWest, just a bit.

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.

Well, that’s been an interesting couple of weeks. An end to the European dream as set out by Winston Churchill in 1948, among others. The cold shivers of the first blast of the Economic winter waiting just around the corner. The simian-like racists with their freshly-issued permits to abuse. The loss of life opportunity for a whole generation of young people. A new low in the perpetually downward spiral of the body politic. And I still have this bloody annoying cancer.

“I’m not afraid of death, I just don’t want to be there when it happens.” Woody Allen once said. You could replace “death” with “Brexit” as far as I’m concerned. I’m looking at both right now, and death isn’t as far behind in the popularity polls as you might have been led to believe ;-).

When I’m drunk or upset I can only think in Galway-ese. It was weeks of internal dialogue along the lines: Well they’re all just a bunch a’ messers and chancers actin’ the bollix and you’d want to go flaking them with a hurley, so you would. They madden me somethin’ powerful, so they do. Will ya get down out of that, Nigel, ya feckin’ little amadáin ya. Now! will ya only look and see what he’s after doin’, the ugly little shite. He’s after shaftin’ the lot of us. Well, I hope he feckin’ dies roaring, God forgive me.

On top of that, I had the bad luck to click on a book called “Into Extra Time” which “comprises the powerful reflections of a Jesuit priest which he wrote during the final months of his life following a diagnosis of cancer”. God bless the poor dead man, and all that, but the feckin’ Amazon engine has me plagued and close to distraction with a barrage of recommended books by God-botherers. All trying to tell me how much comfort I can find. “Is it after givin’ me relief and solace ye’re after?” thinks I, “well, ye can all feck off for a start and take that pile of wasted trees with ye.” If it’s extra time, it’s like extra time in a dreary dull 0-0 game that you just know will go to penalties, and you couldn’t give a fish’s tit for either team.

Sorry. No, it’s fine. I’m alright now. But it’s no wonder I’m skipping along the watchtower with Bob and Jimi looking for some kind of way out of here. There’s too much confusion and I can’t get no relief.

Metaphorically, it’s turning into the year without a summer. Literally, the Year Without A Summer was an actual thing. It happened to be exactly 200 years ago, in 1816. It was down to volcanic eruptions in SE Asia that created dust clouds over the world and caused a volcanic winter. These days, I suppose we make our own volcanoes. Anyway, it caused food shortages and general privation everywhere, including England. It led to such things as the Littleport Riots in May 1816.

It coincided with the end of the Napoleonic Wars (Waterloo was in 1815), and soldiers were coming home from the wars. The English Corn Laws had just been passed by a Tory government to impose huge tariffs on imported grain, in order to keep prices high in favour of well-off farmers (mostly Conservative landowners). The effect was to dramatically raise the cost of food, and it led to a protest movement against the “bread-taxing oligarchy.” To offset the damage, ‘Poor Laws’ were passed that would supplement wages and alleviate the lot of the poor. But these just kept wages low as farmers knew that their labourers’ wages would be topped-up by the system.

Plenty of John Bull flag-waving patriotism went on display, as once again the labouring poor were asked to pick up the bill for wars and greed. Lots of “tax credits” to hide the reality of a “zero hours”, low-pay culture where you worked for a pittance and got treated like dog shit. When it was repealed in 1845, it was partly because of the Irish Famine. Mostly, it was because the rich industrialists got fed up paying higher factory wages so that rich landowners could enjoy higher profits.

To go back to the riot for a moment, it happened close-by in Littleport, Cambridgeshire. A group of people had a “few scoops” in the Globe Inn (alas, it was demolished in 1962) and they then set off to relieve the local wealthy of some of their worldly possessions. Braved-on by this, they gathered up a few fowling guns and pitch-forks in a waggon and horses, and began a march to Ely. Needless to say, the Dragoons, Cavalry and gentlemen militia were soon dispatched against them. The culprits were rounded up, and trials were held in June. Some were transported to Australia, but five were condemned to death. There was then a delay for a week because they had to hire the black-draped Gallows cart and horses all the way from Cambridge – no one local was willing to supply. On Friday 28 June 1816, the five were hanged and buried in Ely. Their memorial plaque says “May their awful fate be a warning to others”. Indeed. Step carefully, you plebs and oiks.

If this happened in Ireland, we’d have a rousing ballad to commemorate them, and we’d still burn with the indignation of their killing. A few days now after the 200th anniversary of their deaths, a little traditional camaraderie goes out to them from me. Poor is poor, no matter what your national flag.

Ah, Memorials, Commemorations and all that. I went to a classical music event in Madingley last Sunday week that was surprisingly good. One song-cycle took the words from Orwell’s 1984: “In his waking thoughts he called it the Golden Country.” I went back to the book for a quick re-read. The Party slogan just seems to have special resonance for these times: “Who controls the past controls the future. Who controls the present controls the past.” The mutability of the past is bad enough, but I keep looking at Media mind-twists on the present and constantly asking: who falls for this shit?

Winston Smith escaped the grey drudgery of his IngSoc existence by dreaming of the Golden Country. In truth, it sounds like a rather ordinary place. An old, rabbit-bitten pasture, with a foot-track wandering across it and a molehill here and there. The UK was asked to vote last week for a return to the past, to some long-gone image of a Golden Country.

I wonder how George Orwell would have voted in the referendum? Who knows, but his Internationalism was well-proven and there is that famous essay from 1945 in which he distinguished between nationalism (=bad) and patriotism (=less bad). Nationalism makes people disregard common sense and ignore facts. Patriotism is “devotion to a particular place and a particular way of life, which one believes to be the best in the world but has no wish to force on other people.” Not a great demonstration of logical thinking either, but at least a bit less bad. Still, at least you can impress your chums by saying that Gove is a misguided Patriot (doesn’t that just sound like a missile out of control?) whereas you have no time for those nasty Nationalists abusing people in the street.

So, here we are two hundred years on from 1816. Climate forces still background our experiences, and we play out the charade of history before it. We still have the under-privileged getting shafted by the Elite, and ever more elaborate tapestries of lies are woven to distract our eyes from it.  Hegel just about nailed it when he said that “We learn from history that we do not learn from history.” We the Golden Country!

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.

If I told you “that meal was sublime” you’d think I was simply saying it was good, even great. A valid, if simple, interpretation. If I said “that meal was beautiful”, you’d infer the same thing. “Sublime” has undergone the opposite of being hyperbolised. It’s been played down to have an understated meaning. This is a pity, because Edmund Burke went to some trouble in 1757 to establish a difference between the beautiful and the sublime. The beautiful is just nice to look at, but the sublime invokes feelings of awe, fear, danger, terror, and wonder.

“WHATEVER is fitted in any sort to excite the ideas of pain and danger, that is to say, whatever is in any sort terrible, or is conversant about terrible objects, or operates in a manner analogous to terror, is a source of the sublime; that is, it is productive of the strongest emotion which the mind is capable of feeling.”

A Philosophical Inquiry into the Origin of Our Ideas of The Sublime and Beautiful

Let me help you imagine this. As an apex predator, the shark is a masterpiece of Nature that you can readily admire. But if you find yourself on a surfboard on the ocean and a large black silhouette swims under your slender platform, you will experience the sublime.

As you’d imagine about anything relating to aesthetics, art and beauty, this gets talked about a lot by art critics. When you are done here, wander over to The Tate for a longer read. You’ll discover the genre of the romantic sublime, in the poetry and paintings of the English Romantics. The painting of the wild landscape or the poem about the ruined abbey had to go beyond literal and rational depiction, and transcend into the realm of the awesome thoughts that it could evoke. For the earlier Romantics like Wordsworth, it was enough that it was “felt in the blood, and felt along the heart”. The later Romantics, like Shelley and Keats, would carry on to look for the terror within. They sought out the simultaneous sense of beauty, harmony, tragedy, and horror. They were in line with Schopenhauer, that greatest of über-miserabilists, in that to consider the sublime is to look at forces so vast and so powerful that they could crush the human thinker like the mere speck of dust you are. From the awesome to the awful.

This all means something to me because for a while now I’ve been trying to talk about Cancer not as some battle to be won or (usually) lost, but as a force of nature that is, in it’s way, beautiful. But this never seemed quite right, and talking about Cancer in the context of beauty and pleasure sounds like a sort of reality denial. I was trying to capture this in 2012, when talking about the essay in Kathleen Jamie’s “Sightlines”, and again last year in 2015 when I talked about the beauty that makes you shudder.

I just lacked the correct philosophical framework, and now I think I’ve found it. Cancer is not a thing of beauty, it is sublime. Cancer is Nature, and Nature is sublime.

Cancer is the shadow of a shark under your raft.

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

 

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

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

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

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

Time Takes A Cigarette, Puts It in Your Mouth

Five Years. That’s All We’ve Got

Looked A Lot Like Che Guevara

Always Crashing In The Same Car

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

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