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One must carry on.

Most days I feel like I have been pulled through a hedge backwards physically and cognitively. But to be still alive is maybe all. Autumn has come now to colour the landscape into yellow butter with flecks of dried red chilli.

There are days when I don’t feel like dying. There are days when I don’t feel like I am dying. But it is like a fog that creeps across to obscure my otherwise refulgent life. I had hoped for more energy. The sudden lack of my spatial awareness e.g. judging distances, hand-eye co-ordination has been a blow. I miss my garden and my gardening projects. As Helen Dillon quotes “When the gardener goes, the garden door is closed for ever“.

I still expect a big bang or two as new lesion shock waves hit. I was taken with a comparison to the Cassini spacecraft story from last week where they deliberately crashed the probe into Saturn’s atmosphere because it had run out of fuel. Twenty years it had been in space. But Cassini was the opposite scenario – it was planned.

Of course I still do not want to die but I know I have no choice, and I must not waste the time I have left. I want to be stoic and accept it. I want to change things actually in my power. I want to harness my energy for the end. I want to make it easier for others, especially my loved ones, to survive my loss with least disruption.

Culture keeps me going now. Stuff such as “My Ireland” by Stephen James Smith. I think it is a masterpiece. I love it for the line “Naysayers and Peig Sayers” even though that doesn’t actually mean anything. Simply put, this poem is a masterpiece.

I felt sad about the death of Holger Czukay and still in awe of how he made the song “Persian Love” in 1979 using only analog technology.

I have been thinking about Döstädning, this Swedish term for the art of death cleaning “by which the elderly and their families set their affairs in order“. It doesn’t appear to have much to offer for me because I’m not in control. It’s back to the Cassini scenario.

I like it that Jenny Diski is remembered. It seems so long since the deaths of Kate Gross in 2014 and Jenny Diski in 2016.

I’m going to add a cannabis oil product to my treatment. This is me acting alone, in addition to the doctors advice. Sadly, the one I will use – Canabidol™ – is THC free, meaning it is a non psychoactive and will not get me high. You’d need to be in the USA, on personal use and not importing to UK to stay legal for THC.

Last weekend I steered the family towards the Devil’s Dyke to pick sloes. I could not go but I gave directions.It all went to plan. Three litres of sloe gin are now maturing for Xmas.


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.

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!

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.

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.

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?

Back this week for another shot at receiving a slow and lugubrious infusion of the poisonous platinum, and this time the platelets had rebounded back to 293 so it was Chemo-a-go-go. Slow and steady wins the race, you know. The only issue was what precise treatment to give, and there was a conference call mid-day to review it. In the end, the dosage of carboplatin and the number of days to take medication (4) were duly pronounced.

There was time in the day for a more detailed discussion of the CT scan result. “Stable”, was the word. And that is exactly what they are. The friendly spot on the right upper pulmonary lobe was exactly the same size. The slightly messy mess that is the collapsed left upper pulmonact scan fullry hilum is no messier than it was. The ‘third man’ node on the anterior mediastinal mass remains the same. I don’t have any recent pictures, but you might like this one we took earlier.

Is “stable” a glass half-full or half-empty? We’ve talked about this before, you know. Standing quite still indeed when you are in a wind tunnel is a very good thing. Not to be dragged tumbling headlong into the ungovernable purple fury of the maelstrom will do quite nicely for now, thank you.

It’s been a period for the Vortex.

We managed to catch the “New Rhythms” exhibition of works by Henri Gaudier-Brzeska. This year 2015 marks 100 years since he was killed by a bullet dead to the centre of his forehead in the First World War. It was on June 5th, 1915, and he was just 23 years old. It is bit of a special collection that Kettle’s Yard holds, because Jim Ede collected him avidly and also he acquired the estate of Sophie Brzeska in 1927 from the British Government.

Sophie and Henri were quite the couple. She was a Polish Governess, he the 18-year old untrained son of a French carpenter with ambitions to become an artist. She was twice his age. He annexed her surname to his own, but they never married. They probably never even had sex, or, at least not very often. They were both as insane as a box of frogs. They arrived into London at a time when the Futurists were being heckled by the Vorticists, and both groups hated the namby-pamby Bloomsbury Set and the fussy old neo-Georgians. They so wanted to deliver a heimlich manoeuvre to regurgitate the modern. Henri and Sophie lived on the Fulham Road and Henri had a studio under the arches in Putney. Ezra Pound bought a couple of his early pieces, but only after teasing him about the unpronounceability of Henri’s surname.

What would Wyndham Lewis and the Vorticists listen to today if they were clubbing in London? Surely, they would trace it back to old-school man-machine motorik and the disembodied dance of a Cabaret Voltaire? But now, it would certainly be the sputtering haphazard glitches, whirrs, bleeps, pops, and clicks of nu-Electronica. Or maybe it would be a haunting refrain of disintegrating music played in a decaying industrial building? One thing for sure, they be cool and having a Blast.

I had a CT scan earlier this week. I imagined it would be all quite mundane. I use the analogy that it is like someone making a photocopy of a page in a foreign language, and only when the translator sees the copy can you get any useful information. The “translation” is happening as we speak and next Monday is my meeting for the results.

But there was drama. The radiologists saw blood clots on my lungs. These can be nasty, potentially fatal, so the on-call doctors were consulted. I had to go into a series of tests and the result was a prescription for a dose of blood thinners. Chemo (and Cetux) make your blood all sticky so it has tendency to clot.

Also, remember I was supposed to travel to California in late May for business. I cancelled because I had a vague feeling it was a bad idea and the travel insurance was a joke – £4000 for 7 days cover. Looking at it now, it’s lucky I was not sitting on a 12 hour long-haul flight with DVT clots forming in my legs. It would have been a fate worse than death to die in California.

The method for administering these blood thinners is self-injection from a pre-filled syringe. The nurse did the first one. I get to do the rest. From the pharmacy I collected a carrier bag full of boxes of syringes.

A syringe really is the most implacable of objects. It just stares at you with lts long pointy needle, almost daring you to cross it. It is devoid of pity. Its payload horde of drugs could be yours, it suggests, but only if you really want it.

Next day, at work, I was scared to go home. I knew that when I got there I would have to inject myself. I don’t think I have a problem with needles, but my coping strategy for 30+ years has always been to look away from the injection. You can’t exactly do that when you are sticking it into yourself.

The injection goes into your tummy. You don’t need to find a vein, just a nice roll of fat. I was very able to do that, what with me being a big-boned boy n’all. Not the most pleasant sensation to pierce your own skin, but really not painful. I am now proficient in self-injection. Wonder what heroin is like? It could be my slightly-misinterpreted version of Breaking Bad.

It’s a bit of a step-down from the usual where everything gets done for/to me. Who knows where it will lead – they may well give me a scalpel, a pack of bandages and a pic of my lung with a big X on it and let me do my own surgery. “Don’t hesitate to call us if you need help…” NHS cuts in every sense.

Red dust, red rash, red mist. These past two months have been characterized by the colour red.

First there was that news that winds from the Sahara desert left a thin layer of red dust on David Cameron’s car. The ghost of Tony Benn. It had to be.

Then it was the red rash, brought as a side effect of the Cetuximab. Apparently it happens 80% of the time. Because it is acting on the cancer tumour it also effects all epidermal growth. Epidermal growth factor receptors (EGFRs) are found in tumours, but they are also found normally in skin cells. Rash tends to be more severe when given in combination with Irinotecan, which is what I get for chemo. That meant a measles-like rash down my chest and back plus a nasty acne-like set of pus-filled spots on my face. Perfect when you have to do customer training in front of a room of strangers 😦

But the good news is that a rash on the outside means it is working on the inside. Skin rash is like a surrogate marker of efficacy.

Then there was a red mist when they told me they’d changed the frequency of the Cetuximab from 100% dose weekly to 200% every two weeks. The idea is to synchronize with chemo but it meant that we were starting at cycle 3 of the chemo so now instead of finishing at the same time, the Cetuximab would carry on for two extra cycles / four weeks. The only justification appeared to be that this is what the Cancer Drugs Fund agency wants. Nothing in it for me, and now I have to wait an extra four weeks before I can get a scan to see if any of this has worked. I complained.

We’re now at the point where six cycles of chemo are complete, and four cycles of the Cetuximab. As I say, two more cycles to go on the latter. Then, after that, the all-important scans. Realistically there is probably only a 30-40% chance that anything will have changed and the tumour is operable by surgery or radio. The alternative will be more of the same – chemo and the drugs.

I’ve had mostly symptom-free chemo cycles, but that is not to say zero symptoms. It’s all quite tedious to be honest. But the fact remains that, despite treatment, my tumours spread and I was told the condition was incurable in January. There isn’t time for self-pity as I struggle to change that situation.

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

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

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

It wasn’t too bad, at all.

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

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

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

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

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

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

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

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

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