I think death will be a non-event, like turning off a light switch. We can’t control it much and Life itself is only an addiction to air.  I will delay it as long as I can, but I feel the carousel carrying me towards it starting slowly now.

That is why it is sometimes distracting and amusing to think about afterlife alternatives.time tunnel.jpg

It could involve different parts or stages. There is the going away or dying part. I like to think of this as like “The Time TunnelTV series opening from 1966–1967 with all the swirling around as the lead characters “tumble helplessly toward a new fantastic adventure, somewhere along the infinite corridors of time”.

But then to my mind it all settles down and becomes quite static. Now it is a matter of whether the dead can intervene to influence or change outcomes in the world of the living.

It’s a space explored by Will Self in “How the Dead Live“. Can the dead smell or taste anything?  Is it like the dead Sara Wilby in “Hotel World” by Ali Smith, where a teenage hotel chambermaid who has fallen to her death in a hotel now craves any sensation: “I would give anything to taste. To taste just dust“. Or, “the cold, in the rich small smells of soil and wood and dampening varnish“. Do you just lie there for eternity like the poem by Robert Browning? Where “Hours and long hours in the dead night, I ask “Do I live, am I dead?” Peace, peace seems all“. Death is not the end but it might be a bit slow. It might be noisy and chaotic to start with as in “Cré na Cille“, before it slows down to complete silence.

But as I said before, I think death will be a non-event, like an on/off switch. My heart will simply stop with joy and everything will just go black. No problem for me but rough on my loved ones.

It is more practical to think about a funeral. I see three options for me that I call “The Full Irish”, “The Woodland Burial”, and “The Pure Cremation”.

The Full Irish is my Catholic religious version. You need a Deity and a Religion to do it well, like they do in Ireland. First, we have to get you on an international repatriation service to get the coffin home to Ireland. Now in the west of Ireland the practise is to bring the coffin to a funeral home for the Removal and Viewing on day one (usually the evening) and then next day it goes to a church for the Funeral mass.  When I was a teenager in the ’70s it was still held in the house if the parlour was big enough but soon that was never the case. In any event you will need some stirring stuff for the funeral mass. Maybe “Panis Angelicus” sung by a bearded Friar in sackcloth robes. After the mass, the coffin is carried to the cemetery and graveside for burial. All very moving and visual but it would be very hypocritical for me to do this as an atheist. So that is ruled out by me.

There are very few cremations done in Ireland and so we need to switch back to the UK and use The Woodland Burial for that option. In my version you will be in the ground but buried in a non-religious space and with a humanist funeral.

The Pure Cremation combines cremation, no religion, and a speedy no-fuss funeral. It is what David Bowie and the writer Anita Brookner did when they were cremated without any funeral service and without any friends or family present. It solves the immediate problem of body disposal.

Once you have the ashes back (assuming you wanted that) you can have a ceremony. I’ve given some thought to a location near Maumeen (“Maum na Ean” or “Pass of the Birds”). It is a very minor road or boreen really off connemara.jpgthe R336 in Connemara that goes past the Failmore River. We usually go up to the summit and then back down again. The Failmore River itself joins the Beanlanabrack River east of Maam Bridge just before it enters Lough Corrib.

Why here? It’s as nice a walk as any in the area with good views but the clincher is local connection – my Great Grandparents had their family home here on the R345 near to Keane’s Bar. It’s just a ruined cottage now. They, along with my Granduncle, are buried in the local Church of Ireland graveyard for the area. It is also derelict – just another sheep field until you spot the church ruin. Only one stuck around – my Granduncle and Grandaunt emigrated to America. I don’t know if they were economic or political migrants, but they were among 40,000 Protestants who left the south from 1920-23 during the Irish War of Independence and the Civil War. My Grandmother converted to Roman Catholicism but that was never discussed. I’ve often wondered if it explains why I feel like an outsider sometimes and not fully Irish. We will never know the answer and these are sad turbulent questions.

Instead it would be nice to just let the river carry the ashes down.

Time for a status update.

On July 3rd I had a brain seizure maybe a blood clot, similar to a stroke. It resulted in several cognitive motor skill disorders, such as poor motor coordination, inability to locate keys on keyboard, confusion, and loss of short-term memory. This was a totally unexpected occurrence. It’s been like that since then.

I struggle against it with e.g. hunt and peck typing, with mixed results.

In my more lucid moments I think existentialist thoughts and wonder why this is all happening to me. There is no answer.

Stormy weather sure enough. And yet, a convergence. Derek Jarman, Benjamin Britten’s “Peter Grimes”, Shakespeare’s “The Tempest”. Gardens, flowers, tulips and why I hate to cut their stems. It goes from a symbol of beauty to one of decay and death. I’ve been listening a lot to “Au Fond du Temple Saint”, from Bizet’s September 1863 operaLes Pecheurs De Perles (The Pearl Fishers). Especially, the David Byrne and Rufus Wainwright duet version. There is comfort there.

I wish for improvement.

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.

Like Jonathan Richman, I’m in love with the modern world. I may not be driving around Massachusetts these days, but I’ve got my radio on. Only it’s radiotherapy. I started last Monday. Every day for two weeks they clamp my head into my own personal mask and put my brain in a microwave. Or the equivalent of, let’s not quibble over frequencies. Maybe I can smell burning. It’s actually not at all painful but it leaves me a bit more dizzy than usual, and these days I am Normal Dizzy the great jazz musician at the best of times.

So, slow me down. Let me build a garden which is a haven of peace and quiet beauty. And live in it a life full of respair where despair is repaired by hope, or at least calm acceptance.

But please don’t confuse me for some apolitical moron on a path to personal discovery and heightened spirituality. I still spit with indignation at mindless repeats of old history, where right-wing bigots use the misfortunes of “destitute foreigners” to advance their own interests. I snort with incredulity that anyone can believe that the Tory agenda for the NHS does not involve causing it irreparable harm. I laugh at ex-Army types who talk about “terrorist sympathizers” but clearly have never had a serious conversation with someone jailed for planting a bomb.

Maybe I’m just more aware of the passage of time. The average human lifespan in the UK is 972 months and we sleep for 324 of those. My current personal target is to have stayed alive for 720 months. Maybe I’m aware that a high probability of early mortality was once common with World War 1, Spanish flu, etc. Maybe I see the things around me with sharper acuity.

My English teacher at the Irish seminarian school was straight out of Chaucer – a short, billiard ball of a man rigged out as a priest in his black robes. He was an 8 ball. Round glasses in a moon face on a round head attached to his round body. ‘Cream buns’ was his nickname. If we only had a bit more culture in us we could have called him ‘Skoleboller’ (‘school buns’), which are Norwegian cream buns.

He tried as teachers will do to instill some love of literature in the unwashed sons of farmers and small town solicitors. “Boys, shur ye’ll like this one, he was only a youngfella like yersels”. He was talking about Francis Ledwidge (1887–1917). The centenary of his death will be on 31 July. Ledwidge was a war poet. He survived the battle of Arras (where the English poet Edward Thomas was killed), only to die at the next one in Ypres.

The poem that the portly priest was praising prolifically is called June. It begins:

Broom out the floor now, lay the fender by,
And plant this bee-sucked bough of woodbine there,
And let the window down.

I didn’t have much time for the pastoral in those days, but it was so easy to visualise that country cottage that I was a little bit impressed. A woodbine is the folk term for honeysuckle, in case you didn’t know. The Victorians didn’t like young girls bringing honeysuckle into the house because the smell of the flowers was believed to cause erotic dreams.

You could maybe pair it with a little bit of Seamus Heaney:

Were we not made for summer, shade and coolness
And gazing through an open door at sunlight?
For paradise lost? Is that what I was taught?

Even a shower of rain is good in June. Petrichor is the name for the earthy smell made when rain falls on dry soil. Sara Teasdale (1884-1933) wrote about it:

There will come soft rains and the smell of the ground,
And swallows circling with their shimmering sound;

I try to see and hear things better now. Swifts that scythe the summer sky, madly and constantly screaming as they fly. The chuckle-cackle cry of a passing jackdaw. The mutually-reassuring chirps of long-tailed tits to the rest of their family group. A good day is spotting a Silver-washed Fritillary butterfly in the garden (and listening to Boris Johnson make a twit of himself on live radio).

Small pleasures.

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.

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!