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Not so good. Have lost ability to type. It may be time now for Döstädning, or “the gentle Swedish art of death cleaning”. I want to make sure that I say this first:

I wrote in the Book of Love and, better still, I found my name written there too.

They say almost everything will work again if you unplug it for a few minutes including you. I guess we’ll find out.

I just wish there was more time to see plays such as Woyzeck in Winter. In 1837, just as his unfinished play Woyzeck was nearing completion, the German dramatist Georg Büchner died of Typhus. Before he was twenty-four years old. In many ways he was the first Punk. He also said in 1834: “I despise nobody, least of all because of their intellect or education because nobody can determine not to become a fool or criminal.”

And, as W.H. Auden says, “Time will say nothing but I told you so.

Dying is easy, it’s living that scares me to death“, says Annie Lennox , who isn’t currently dying quickly or elegantly compared to anyone else as far as I know anyway. “Dying is easy, it’s paying for it that’s scary for your family“, says the insurance salesman that everyone avoids. “Dying is easy, it’s the termination of the individual unity of consciousness that represents the ‘soul’ and signifies you as an individual that is difficult” says Schopenhauer because someone always has to come along and put a heavy on it. But he believed that each day is a life and that falling asleep is the equivalent of dying. Life in a day.

It was the last day of radiotherapy today (Fri Jun 30) and I’d already asked if it would be OK if I took the head mask thingy home with me. “Of course“, they replied. They’ve been asked this one before. “A ritual burning ceremony in the garden maybe? Or, perhaps just a simple wall mounting?” I muttered something about consulting the artist daughter before action any action. You can only stand and admire the built-in natural Art sensibility of the NHS. The Irish healthcare equivalent is just bland Americana by comparison – a derivative driven by corporate insurance policies. No life, no soul, no party. One NHS WBRT happy meal please. No problem, do you want Feng Shui with that or are you OK with just Hygge?

mask IMG_1127

But come here to me now, isn’t it a great likeness of me don’t you think? You can see the Mother’s side of the family and especially them first cousins in Boston who worked as cops and who never did make it back to Connemara not even for a short stay even though they swore they would at least a hundred times when there was a drop of drink in them and sure anyway isn’t it only a small world and a short hop these days?

Back in the day I promised I’d try to give you a glimpse or two into Death and Dying on these pages. This is my death mask. Slip into one of these and you’re not coming back. A one-way ticket. Just make sure you drag out the journey. Take the stopping train and the tourist route. Admire the scenery.

So red rover, red rover you can call cancer over but all it has to do is bide time. Your body will get weaker. This is why there is no “it” to it to fight. John McCain is advised to fight his brain cancer “Cancer doesn‘t know what it’s up against” – just wrong. I don’t want to be alarmist now but it is beginning to look grim.

It is time for calm. Focus on stuff that’s harder to get is better. When you need to make an effort to get it. You have to be there for it, not the other way round. A Yorkshire curd tart is improved by the realisation that York and Micklegate in particular are perfect and that the Holy Trinity church offers the best Gothic image you could possibly need or find on a bright chilly October afternoon just before twilight. Collect enough and you have life points.

It is best to avoid false hope. Is it a theft to harbour false hope? What about taking money for private treatment in those clinics which offer immunotherapy with a 100% success rate? And crowd funding? Even miracles have a ‘best before’ date. Use by, before you die.

Maybe you need lots of Friluftsliv from Daggfrisk to ensure Lagom. Maybe you need Ikigai. The Irish only have Cluthar which is the word for cosy.

That will be enough.

For me the important thing is to extract all the pleasure that is going. One of my favourite quotes comes from Sir David Scott via the gardening writer Christopher Lloyd: “The best time to drink champagne is at 11 o’clock on a Sunday morning when everybody else is in Church.

 

Every afternoon now around 4pm, when more civilized people are taking tea beside the croquet lawn and a somnolent church-bell across the indolent meadow calls the faithful to their knees, I slide into the belly of the machine. I’m up on my linear accelerator with high speed electrons flowing, like a Hawkwind song from 1972. But the sundial on the distant church tower still shrills ‘Tempus vincit omnia‘.

Having to stay rigidly still while surrounded by high-tech isn’t the most straightforward of asks, so it helps to let the mind wander and fixate on something else. Anything else.

So I’ve been thinking about my newly-installed auricula theatre. Allow me to articulate about my auricula theatre. I may not believe in a ‘bucket list’ but I still have pet projects that I want to do.

An auricula is a small alpine plant from the primulaceae (as in primrose) family. They have waxy evergreen leaves and flower in a wide range of colours from purple-black to palest yellow-white. They’re mostly tri-colour with either a gold or light flower centre and two circular bands of colour. They look for all the world like round enameled metal badges.

They are cheap and easy to grow but the challenge with auriculas is to protect a waxy flour-like coating called the ‘farina’ from rain drops. It’s also better if you can view the pretty flowers at eye level.

auricula

The solution is an auricula theatre. It’s a bookshelf mounted on a wall and painted black. It has a lead roof to protect it from the elements. But when all is said and done, it’s about aesthetics. The weathered terracotta, the lush green foliage, the black wood, the slate-grey lead, and of course the jewel flowers. They add up to something antique. The classic ‘more than the sum of its parts’ Gestalt.

That’s the botany part, but there is a social history part that is just as interesting. The auricula is one of those ‘florist’s flowers’ that are ideal for competitive growers who want the best specimens and most spectacular new hybrids. The story has it they were brought over to England by Huguenot refugees fleeing France around 1685. One of the main places they settled was around Spitalfields in the east end of London.

Over the course of the 18th and 19th centuries the auricula societies became more organised especially in the northern cities. Being small and with easy demands, you could grow a lot of auriculas in the back yard of a back-to-back terrace. A typical day out involved the showing and judging followed by a simple ‘shilling supper’ and a good supply of fine ale. I’m sure they were always a great affair.

Rich people liked auriculas too. My first proper exposure to them was at Calke Abbey in Derbyshire. I like Calke Abbey. The NT has left it in a dilapidated, non-restored state to show what the decline of an English country house looks like. Not that this affects the garden quite so much. Calke Abbey has a unique auricula theatre that is more like an altar or a small temple than a bookcase. The first time I saw it in the summer of 2004 I was a bit snooty because it was populated with Geraniums and I ‘just felt it was wrong’. What a pompous thing to think. They’d probably temporarily replaced the auriculas for a summer display of colour as the auricula is over by end May. That’s what I have decided to do for the summer. I’ve put my auriculas in a cool bright spot and I’m using Gerberas as a summer replacement. It’s an experiment.

To go back to the weavers of Spitalfields, they were noted for their love of flowers and plants. The first artisan botanists, using their natural knowledge. It’s one of the main reasons why the Columbia Road flower market in Bethnal Green exists and persists even to this day.

What I didn’t know is that the Huguenots were soon followed by Irish weavers in the mid-1700s following a crisis in the Irish linen industry. The market for silk had its share of downturns and taxes over the decades, but still employed 50,000 homeworkers working for master weavers on a ‘putting out’ basis. Think freelance, zero hour contracts. There were regular protests and riots against threats to wages, with the usual reprisals. In 1769, for example, the Spitalfield riots ended with an Irish and a Huguenot weaver being hanged in front of the Salmon and Ball pub in Bethnal Green. Poor John Doyle, poor John Valline, hanged December 6th 1769 on false informer evidence paid for by a master weaver called Lewis Chauvet. Over the following years, many of the Irish left weaving to work on the building of the nearby London docks.

So, I had to have an auricula theatre of my own. I dithered over it for years so it was lucky when it showed up as a birthday present back in May.

There needs to be a lot of optimism in gardening. When I was a Psychologist, I had to know about things like the Eysenck Personality Questionnaire (EPQ). I can’t recall which test it was in, and it may have been revised many times since, but one of the questions that often made me smile was whether you planted spring bulbs in autumn. It was an indicator of optimism.

Me. I plant trees.

As you may imagine, cancer and optimism are tricky companions. Too little optimism, and you may ‘turn your face to the wall’ with negative survival consequences. Too much, you’ll be annoying at best and may turn to radical solutions such as only eating raw vegetables as your alternative to chemotherapy. You have to be realistic and aspire to becoming what Philip Larkin calls ‘The Less Deceived‘. Cancer is your death growing inside you. It probably likes raw vegetables. Keep the body healthy for us, for we are many and our name is Legion.

All around me are plausible reasons for pessimism. This week, for example, the Swedish actor Michael Nyqvist died aged 56 after “a year long battle with lung cancer”. He was in the original ‘The Girl with the Dragon Tattoo‘ film. Born in November 1960, he was a bit younger than me. But, a “year long”? That’s no fucking time at all. What am I doing still kicking along after 8 years?

There is a recently published online tool for people with a diagnosis of colorectal cancer called the QCancer®-2017 (colorectal, survival) risk calculator. It’s driven by data obtained from many thousands of GPs in the UK. If I pretend it is 2009 again and I’ve just been diagnosed with my stage 4 CRC, it gives me an overall survival probability after 10 years of just 2.6%. If I tell it the truth that I have already survived for 8 years, then the probability of making it 2 more years to 10 years goes up to 60%.

I’m going to plant at least one more tree.

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

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

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

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

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

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

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

Time for a gin and tonic.

I thought it was going to be a quiet period. I had a regular cryotherapy session over at Thoracic Park on Monday. There was evidence of infection and the op itself was a bleeder when they hit the tumour so they put me on more antibiotics. But I should know by now: there is always a place for an unexpected and extreme event in CancerWorld. Quiet life? No way. That’s not how art is made.

On Tuesday, I was home working at my desk and trying to finish the last line in an email to a customer. I became aware that I was disoriented. Couldn’t work out what the mouse or keyboard did any more. I thought it prudent to lie down until it passed. It was then that I had the seizure. The pain down my left side made me think I had a PE clot that was moving upwards. Then I lost consciousness and I’m told I experienced convulsions.

This one was a proper 999 / Ambulance moment. First time ever in all these years I’ve had to do that. By the time I came around, it was to see three Paramedics standing in my bedroom. It was off to A&E for me.

Long story short, the cancer has spread to my brain.

The CT scan showed up cerebral metastases with swelling (oedema) on the surrounding tissue. They kept me in hospital until the Wednesday. I’m booked in for an MRI scan early Monday next and I have a post-discharge follow-up session in Clinic the same evening to hear more details. In the meantime they’ve put me on anti-epilepsy drugs plus steroids to reduce swelling. They’ve told me to tear up my driving license and avoid machinery.

Brain metastasis in colorectal cancer is a rare thing – typically in the 2-3% range. But, I’ve survived so long beyond the few average years that are expected that I guess I’m now pushing the envelope where these stats are concerned. It’s not beyond the realms of possibility that this will be treatable. Whole-brain or localised radiotherapy would be one option. We shall see.

The day after I was discharged was my 57th birthday. I had the most fantastic few days with amazing and thoughtful gestures bestowed on me from every side. I even went in to the office and had a couple of hours at the beer festival. Arsenal did the necessary and won the FA Cup for me. I’m dizzy and I like to have someone near me when I’m out and about, but I’m happy. I just need to stay alive to enjoy all the good things I have.

It’s time to write the Lonsurf Diary.

To quickly recap, I was signed up for 3 cycles. Cycle 1 started January 11th 2017; cycle 2 on February 11th, and cycle 3 on March 11th. Each cycle lasts 28 days so the final day would have been around April 8th.

Since my bowel and liver surgery in August 2009, I’ve had three previous experiences of Chemotherapy. First was an adjuvant treatment with intravenous Oxaliplatin and oral Capecitabine lasting from Oct 2009 to Mar 2010. Then, there was FOLFIRI plus Cetuximab (both i/v) from Feb to Jun 2014. A drug trial combo of AZD6738 with Carboplatin (again, both i/v) followed one year later, from Feb to Jun 2015.

Each regimen brought different side effects. With Oxaliplatin, it was neuropathy and neutropaenia (low white blood cells). Cetuximab brought an acne-like rash all over my face and torso. Carboplatin and/or the experimental drug also lowered my white blood cells and platelets.

But none of these were really serious, as measured by my ability to do normal things like working, walking, and eating. No constant nausea. No hair loss. No mouth ulcers. No loss of appetite.

For the 2014 and 2015 sessions it was the same pattern. The first CT scan, done around three months in, would show a positive “progression-free” result. The next scan would show the cancer was progressive again and chemo would stop. Scans done after that have continued to show progression as the tumours get larger.

My most recent scan from early April showed the tumor growth had stabilized. When I initially asked for Lonsurf, I calculated a 2% chance of being a “super-achiever”, and around a 20% chance of getting any sort of positive result. As far as I know, I am one of six patients who have recently received Lonsurf at my hospital. I’m the only one with a progression-free result. That supports the statistic and makes me the “lucky one”.

Unfortunately, it also came with lots of tiredness / fatigue, reduced appetite, and nausea / vomiting. Although I managed to stay the course for each of the three cycles, my white blood count was dropping sharply. I ended up in hospital with (yet another) infection, and stayed there for 4 days at the beginning of April. After massive amounts of i/v antibiotics I felt good again. When they discharged me, I told them I had not felt this normal since around October of last year.

So, what to do next? This is the familiar ground of chemotherapy, in which increased progression-free survival is not such a benefit since it comes with toxic side-effects. I made the decision that I would ask for a break from the drug. To use the title of the David Jones first world war poem, I would become In Parenthesis. There will be another CT scan in late June, with results in early July, and we shall see then.

In the meantime, I’ve resumed my cryotherapy sessions back in Thoracic Park. One thing absent from the CT scan results was any mention of tracheal and bronchial lesions. They have done a great job cutting these out or reducing them. This will continue “for as long as I want them to do it”. I do.

It’s a tricky decision on the Lonsurf. After reading the obituary of Robert M. Pirsig, who died recently, I was reminded what he wrote back in 1974:

“The test of the machine is the satisfaction it gives you. There isn’t any other test. If the machine produces tranquility it’s right. If it disturbs you it’s wrong until either the machine or your mind is changed.” (Zen and the Art of Motorcycle Maintenance)

My body is my machine. It didn’t feel right. I need to take pause.

The only mountain I’ll ever climb is a metaphorical one, and yet some of the terms in the climbing glossary are very appealing. My favourite is Belaying, which is the use of an anchor for a rope so that a falling climber does not fall much further than the anchor point.

In CancerWorld, the rope is time. Every so often, it feels like you slip and fall. Instead of crashing all the way to your oblivion you are left dangling from some anchor point. It’s further down, but not the bottom. I compare what I considered my ‘normal health’, say back in November 2016, and it is not the same as today. I’ve often remarked previously on how absurd if felt to be suffering from a terminal illness and yet feel and look so healthy.

Now, I feel much more tired. My appetite has declined dramatically. I look at my body and see all the vanished muscle (still covered by some flabby fat, annoyingly). I’m not sure how severe the weight loss has to be before they call it Cachexia, but it must be close.

But in January I wanted desperately to start my chemotherapy drug, Lonsurf, and I pressed on. In February, when they said my blood counts were all normal, I asked to continue with cycle #2. This week, although I was expecting bad blood reports, in fact it was normal and I have been able to go on with cycle #3.

The side effects that would have led to abandonment (diarrhoea leading to dehydration then kidney damage, mostly) did not happen. I do feel enormous fatigue on many days, and occasional nausea. There is a tendency to under-estimate an oral drug compared to i/v, as it is four tiny tablets twice a day. But the 160mg daily dose soon builds up inside your system. In a given cycle you take the drug in the first half of the month, then abstain in the second half. It is during the second half that you feel it most.

The plan is to do a CT scan at the end of March, and review the results in early April. If the tumours have reduced, it will be motivation to carry on taking the drug. If they have increased, I will stop. If they are the same (“progression has been arrested”) then it will be a mighty dilemma.

Tomorrow, it’s back to Thoracic Park for the regular cryotherapy session. And, as always, again. They’ve worked on the same two lumps at most of the sessions so far. Trying to keep them in check and stop growth. They seem willing to carry on for the long-term.

My date at Addenbrookes on Jan 3 turned out to be a bit of a damp squib. The drug hadn’t been ordered (properly) and there was nothing waiting for me. Spend a fair few hours in Clinic and Pharmacy but the short of it is that it will be ordered and delivered to me.

A day out in a large hospital is a perfect way to sample the latest infections. I chose an especially virulent chest bacteria/virus, and spent the rest of the week in bed generating generous quantities of thick phlegm. It never quite got to fever stage, so just one step short of pneumonia.

Then, another day out in Thoracic Park for  a bit of freezing and frying. I should be so used to it by now, but I do rather play these things down. It starts with a bit of throat spray and then a large injection directly into the neck. I could feel a little panic coming on so asked for more sedative. Problem solved.

An hour ago. the courier arrived with the drug. The Lonsurf Diary can commence properly now. Tomorrow is a handy date to remember (11/1) so that will be Day #1. A bit of a slow start, but hopefully not quite in the realm of “While we ponder when to begin, it becomes too late”, as warned by Marcus Fabius Quintilianus.

Lonsurf is an oral drug, as I’ve mentioned before. That doesn’t make it less intense than an IV. Eight tablets a day for 5 days, two days off, and then on again for another five days. That will be Cycle 1.

Boys and girls, I fear we need an inspirational quote to get us going in 2017. I choose this one from William James: “Pessimism leads to weakness, optimism to power.”

Stay positive.

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.