Undertaking a course of chemotherapy for 18 weeks is to enter a very different world of experience. It is akin to going on a four month trek across a mountain range ( think Ladakh, barren dry and wild) involving steep and treacherous paths, energy sapping high altitudes that take your breath away and requires some comparable skills and attitude to complete. Approached this way, the experience can be tackled more as an adventure than something to be afraid or anxious about.
The two main challenges I faced in those weeks were a dramatic loss of energy and a deterioration in my capacity to digest food. The latter I tackled by judicious use of short periods of fasting, 1-3 days to minimise the risk of nausea, lighter food loads with smaller and more frequent meals and in the harder periods eating just stewed apple, washed down with lashings of lemon and ginger tea. In addition I used digestive enzymes and probiotics in pill form.
A course of chemotherapy parallels a mountain trek in that in both, one is confronted by the issue of managing one’s energy on a constant basis. Under chemo I estimate the rate of energy depletion is 20 to 30 times faster than normal. To illustrate this, if I walk uphill for twenty minutes on any slope greater than 5% incline, then I will feel as exhausted as after a ten hour mountain trek in the Atlas mountains. Conversely the recovery rate is also just as fast; so if I rest an hour I can repeat the same climb. I learnt the different ways to deplete one’s energy, walking, standing in queues, listening and talking to friends, and to measure each carefully or suffer the consequences if I miscalculated. Miscalculation leads to levels of extreme exhaustion such as falling asleep at night fully dressed and teeth unbrushed as both would lie beyond the will’s capacity. I learnt that having one’s feet up is twice as restful as having one’s feet on the floor and that meditating was four times more effective.
So I learnt by trial and error what I could and couldn’t do. For example some of the lessons I learnt are “running for the bus will make you feel very ill”; eating a large slab of foie gras in Megeve will definitely lead to a liver attack requiring a day in bed. Ski for more than hour and I risk not having the strength to walk back to the hotel. As I progressed through the course my errors became more serious: Eating seafood at Zizzis led to a long fall from a narrowing path requiring rescue, and a week of hospital food see blog no.2. Or again perhaps it wasn’t such a good idea to spend a week at 2200 meters altitude in Italy, because chemo tricks the body into thinking it’s 4000 meters.
There were times when in hospital and in Sauze when my energy was down to 1%, leaving me feeling alarmed and even frightened. But otherwise, most of the time my positive mood was stable despite the body seeming to crumble beneath me- the hair loss, the blackening fingernails, the loss of energy. Partly because these symptoms are temporary, but also because of the belief that I hold that I am not my body.This belief stems from meditation which comes in useful as both it and serious illness are the means by which I can dis-identify from the body and thus come closer to the truth of who I am. In other words, all objects of observation -the body, thoughts and emotions are, by being observable, objects to be noticed and accompanied by the subject- me and therefore subject and object can no longer be conflated into one identity. Dis-identifcation thus leads to detachment, and detachment to less reactivity and greater calm. I believe it is significant that one of the first questions my oncologist asked me was whether I meditated.
In conclusion, despite some painful mistakes and some dark moments, overall I can say that I quite enjoyed the experience as a challenge since it was technical in nature, like a steep black slope before a skier. Lots of route and activity planning and the chemo gave a daily edge to all one’s activities as I tried to keep to a normal life. I was lucky that it was one of the less severe drugs. Of course there were times during nausea phases when happiness and positivity were absent inevitably, but they soon returned. As I near the end of this particular adventure I can state that the trepidation I faced before embarking on this chemical journey has definitely been lifted.
Come uno spettro mi aggiro tra gli sciatori,
aggrappato a un braccio amico mi trascino,
troppo invecchiati i miei muscoli
da brutte sostanze chimiche che al corpo dovrebbero dare la vita. Davanti mi sfrecciano sgargianti i colori degli sciatori,
tesi dall’arco del loro piacere.
Subito mi attrae il richiamo di una panchina marrone,
verso di lei, verso quell’impalcatura di legno, senza fiato barcollo,
verso quella promessa di respiro e ristoro.
Un vecchio rifugio alpino, la mia meta giallo mostarda,
è a cento metri di distanza.
Ci metto un’ora a riprendere le forze,
ed in soli cinque minuti raggiungo casa.
Sotto lo sguardo vigile delle conifere, la montagna
proietta la sua ombra sullo sciame di chalet ammassato a valle.
Ora le grida eccitate degli sciatori sono soltanto un ricordo,
la loro assenza è colmata dalla dura e aspra ricchezza del silenzio
che pende invisibile dai rami imbiancati.
Sotto il buio di pezzi di cielo carichi di nuvole grige,
respiro l’aria tranquilla del plenilunio,
e so che questa quiete è la mia natura;
che questo profondo, ineluttabile silenzio dei monti è la mia essenza;
chiaro e lucente come seta sottile,
forte e calmo il mio corpo respira:
perché è l’anima la mia casa.
Traduzione di Alessandro Scafi
Pins and needles in legs, hard to breathe.
As the cold spread up my legs from my ankles,
I wondered, “is my extraction looming now. ”
Like some vertical medivac was about to occur
And I, to float up above the chairlift and the skiers.
“Are you alright?” Asked the kindly woman,
In this shabby brown cafe with its worn velour.
A doctor, a fellow customer, soon appeared
And fed me water and sugar, holding my hand,
The sweetness of the gesture
Touching me deeply, as the kindness
Of strangers never ceases to astonish.
Meanwhile, The cafe owner exclaimed
“He didn’t eat here, he didn’t eat here!”
And called the Carabinieri to have this disturbing
Presence, with his feet now up the wall
Removed from her tawdry establishment.
Refusing the paramedic’s request for hospital
I awaited the return of my skiing friends.
Passing over is best not done among strangers, and
Death is a gift not to be shared with the ungenerous.
She, the owner did not deserve that honour.
Even my soul decided abstraction from form,
In a place of browns and watery coffee
Was not the time, nor the place, that day.
I walk through the skiers like a ghost.
Holding a friendly arm, I shuffle,
Muscles made old far beyond my years,
By dark chemicals made to give the body life.
Skiers in bright colours flash past
Intent in their pursuit of pleasures white.
I spot a bench, brown and inviting
And stagger to it; it’s wooden lattice
The promise of rest and easy breathing.
My goal, an old Alpine refugio, mustard yellow,
Sits a distant one hundred yards away.
For one hour I gather my strength
And in five short minutes I am home.
The mountain with its conifer sentinels
Spreads its shadow across the bowl of clustered chalets.
The excited cries of skiers are now only memory,
Their absence filled by the rich pungency of silence
Hanging invisible off the white-coated branches.
Under patches of heavy grey clouds
I breathe the quiet air under a full moon.
And know that this stillness is my nature.
The unstoppable deep silence of the mountain
Is me; I am porous; a sieve for stillness.
Translucent and transparent as gossamer silk
My body breathes steady and slow
For indeed, my soul is home.
Lying quarantined in a ward of one
I rest between the hour of needle points
And ponder how clever my veins are
At playing hide and seek with the nurses
Who wrap a rubber tourniquet around my arm
tap, hold, squeeze and finally make
That sharp plunge, and yet they miss.
And so, I leave them to it, and wander off.
I climb into my breath, which I own,
And slowly pull away from the kerb
Of this room, out through the window
Above the trees, the cars and the hubbub.
I hear the nurse speaking softly
“I didn’t get any blood, I must try again”
But I am away in my helicopter of light
Soaring up over the city, content
To see that I can fly where I will.
Yes they have my punctured body
In that sparse room with lime green walls
But I am the pilot of my breath
With the wind on my scalp, I watch
The red orb drop slowly into the sea, with
Its rays, a tiara of light speading its fingers
across a thin and darkening sky.
Cheating death by needlework
Chemo cycle 3 week 2
I started vomiting at 8.00 pm at my sister’s, where I was staying. Then went very cold with uncontrollable shivering. After several phone calls to my oncology support team Celia was told to take me hospital. By the time I got there at 10.00 I couldn’t walk and Celia found an ambulance driver to push me into A&E in a wheelchair. Once there, on being told I had to wait 15 min for triage, despite my care team having rung through to prioritise me, Celia replied no we can’t wait (attagirl!), the receptionist took one look at me and in 5 min was seen. I had the dubious honour of being no.1 in A&E. Then I had my first needle for blood tests and a cannula fitted. Later they struggled to get another needle in to me because my veins had collapsed in my arms from dehydration.They did eventually. I had after all vomited 70-80 times in a dozen waves and had become semi delirious, strangely thinking I was in France at one point. This state, combined with a high temperature meant I experienced unfathomable depths of unwellness. An injection stopped the vomiting and was put on a rehydration drip. We waited till 4.00 am for a bed on a ward. All is now a blur and I remember very little of that night.
Cause : chemo damages the gut lining and low immunity allows bacteria probably from prawns eaten at lunch in Zizis restaurant to create havoc. Severe gastro-enteritis- both ends then leads to rapid and life-threatening fluid loss; similar to stage 2 of the 3 stage Ebola process.
The gastro-enteritis had overwhelmed my immune system and caused a drop in neutrophils the body’s white T-cells triggering Neutropenia, a dangerous level of vulnerability to systemic infection. My doctors activated the Neutropenic Sepsis Protocol and I was moved to quarantine and for next 3 days monitored every 2 hours (blood pressure tests) causing sleep deprivation and turned my arms, back of hands and stomach into pin cushions; between 25-30 injections of various gauges and administered with various ability followed. My particular favourite was the daily abdominal two step; two injections one left and right into the abdomen. Meanwhile being aggressively rehydrated by an endless number of liquid bags above my head into my veins.
The protocol the hospital followed may have saved me from neutropenic sepsis which I have found out is 7-10 times faster than Ebola at sending one to the next world. Death comes with a 70% chance in only 24hrs. Everybody knows about Ebola but I did not know about Neutropenic sepsis which is entirely a risk of a medical treatment – chemotherapy. One is warned about the danger of a raised temperature while undergoing chemotherapy but not of the potential deadly consequences.
Fate had one last surprise in store. I was ready to leave the hospital but beforehand I had asked for my 3 monthly injection for hormone suppressant. This is a 10.8mg implant administered to the abdomen by syringe using a 14 gauge needle meaning its 2.11mm thick, more akin to a small screwdriver. I had asked for an experienced nurse for this procedure. At 3.00 pm a senior nurse appeared in a smart dark blue uniform- a badge of seniority, telling me the one supposed to do it was called away and she would do it. Twice I asked her if she knew this procedure and twice she said yes. I didn’t quite believe her but given her rank, level 6, I thought ok let’s get it done. The last one I had took less than half a second; painful but quick. She took 10 seconds to slide that tool into me, leaving me hurt and angry. Mortified, she then confessed she hadn’t done it before. As a red flower of blood seeped through my pyjamas, I felt sorry for her. Somehow it felt that the room had morphed into a crime scene. She and I bound together by the unspeakable intimacy of perpetrator and victim, joined by the promise of secrecy and her guilt.
One endures tortuous treatments because of trust in the administrator and the good intention of the procedure. Medicine depends on such trust it all falls apart. Every injection is a submission to be hurt by a well-intentioned stranger.
I have been changed by this week; I am mentally stronger, more resilient and now battle-hardened. Physically I am currently more frail; At first I shuffled about like an old man and even holding a newspaper was tiring. Two friends I have seen initially failed to recognise me. But my happiness has returned and I feel somehow victorious in this battle. Pity it was with the dumb Orks of my chemo army attacking indiscrimately rather than the real enemy, my disordered cells.
Through good needlework my doctors Tom and Alastair coordinated a campaign to keep sepsis at bay. And in the process I have learnt all about needles, their size, and the various places they go and the intimate dance that takes place between nurse and patient at the moment of insertion. I like the way the nurses offer a choice of where to be stabbed, thigh, stomach hand or arm.
Overall the care I received at the Royal Free in North London was first class and I got to talk to nursing staff from a wide variety of countries from all over the world, a truly multicultural organisation. I saw the best and the worst in human nature and all in one short week.
- I now know to get to hospital in one hour of getting the smallest temperature. I have been shocked by the speed at which a body can decline towards death when things go wrong.
I plan to go to the Italian Alos this week with a friend and have put detailed plans in place for Evac off the mountain in an emergency with volunteer locals so I can get to a hospital in 60 min in all weathers and at any time.
Is a terminal diagnosis a bad event? It depends on the perspective. To me it’s neutral. Neither good or bad. It just IS. It’s how we colour in the spaces between the words that matters. Will it be in dark greys and black of anger, sadness, and loss, or, in bright yellows, greens and purple of joy happiness and gentleness.
Here below, based on my recent experience are ten reasons to view such a diagnosis in a positive light.
1. A general invigoration of my engagement with life has suddenly occurred with an increase of purpose and vision and energy. These days I wake up early and actually get out of bed promptly, excited to start the day.
2. A desire to abandon my focus on making money and material things – what I can’t take with me when I go – and focus instead on what endures; love and the meeting in relationship.
3. A new focus on creative expression; am now motivated to write that third book, short stories, poetry and a journey blog; idleness, born of a sense of unlimited time, has evaporated.
4. I have developed a greater aversion to negative encounters. from rude waiters to acquaintances who are complainers. Life is literally too short to waste on unproductive situations. A degree of ruthlessness is required.
5. A shortened future has intensified the present moment; past and future have in any case, no lived reality. This weakening of the future’s hold on the mind has made more space for joy without hope: without hope because that also belongs in a fictitious future. It’s like the mental energy wasted on future concerns has become available for the present experience; I am simply more present.
6., Sunlight, dawns and sunsets of which there are more in my life now, music, the taste of food and the company of cherished friends have all taken on, at times, an almost hallucinatory intensity with moments of blissful exhilaration sweeping through my mind.
7. The diagnosis has given me an opportunity to meditate deeply on the meaning of life, suffering and death, knowing that death is perfectly safe- every living thing does it. It’s natural. And I practice dying every day I live, by simply falling asleep.
8. A deep trust in the wisdom of the universe has awakened in my being. The coming journey is, above all, a journey of letting-go; letting go of timetables and plans, later, relationships and ultimately my body.
9. Unlike sudden unexpected death, a medical prognosis of this kind gives one the chance to put one’s affairs in order, to make one’s time on earth meaningful, and to say goodbye to loved ones. It’s actually a beautiful graceful process.
10. So, who am I that is to die? That is the question that has taken an unexpected urgency. If Christmas, countries, even time and ideas of identity that make up personhood are mental constructs without real foundation as many spiritual teachers advocate, then who dies? A terminal diagnosis brings these perennial philosophical questions to the fore. Is it possible to “die” before death, and if so, does death of the mind or consciousness actually exist? In the coming months I shall attempt to answer these questions.
A poet pours his heart and soul into his work.
A poet is fearless of others’opinions.
A poet writes what he or she is called to write.
A poet recognises that he or she is but a channel.
A poet is therefore humble before the Source.
An Elegy to Emmanuel
Do you remember
I was five years old when we met
At L’Ecole des Belles Feuilles.
And I invited you, a small French boy
Home for Thursday lunch. And you so shy,
Had to be coaxed up the stairs
Step by step up that red carpet,
To the third floor at eleven
Rue Spontini; by the pastry shop,
Where later, after school we would buy
Yellow Caramba toffee sticks.
Do you remember
How we played for hours, building battleships.
From Lego. With triple rows of cannon,
We fought sea battles in my bedroom.
Or when, in your flat with the long corridor,
Grey walls and wooden floors, that you shared
With your mother and three brothers,
We giggled and panicked, as we spun off
Musical Chairs and I, dared to refuse
Your mum’s coffee cake, as we boys gathered
Around the table in La Rue de la Pompe.
Do you remember
Our holidays at La Noé Rocard;
Your grandparent’s little chateau by the Loire.
How we used to pick up wild strawberries
In the woods, and play in your grandad’s blue
Four-O-Four Peugeot in the barn, and chased
Each other round the garden hedges till lunch,
Where we scoffed mounds of haricots verts, piled
On white plates, and filled glasses with little hills
Of fresh fruit salad soaked in white wine, and
When finished, we ran out to play once more.
Do you remember
How back in Paris, our mothers grew close
On our friendship, so we had two mums and
I, two families with four new brothers.
How Versailles, Saint Cloud and Meluns, just names,
Came to us fresh; new playgrounds to explore
On croissant Sundays when time was promise.
How you used to sprint across the traffic,
Leaving me holding your mum’s hand, aghast.
At your daring in the Bois de Boulogne,
Where later, we ran through dusk’s dark embrace.
Do you remember
When my dear parents brought you ‘en cachette’,
To my Prep school on a summer’s Sports Day,
And my delight to see you sheepishly
Revealed from behind my parents’ back.
How we then ran on beds in empty dorms.
I so proud in my little grey uniform
Showing you round my English boarding school,
With its faded classrooms and wooden desks,
And the pavilion on the playing fields,
Pungent with cricket sweat and linseed oil.
Do you remember
That summer holiday in sixty-eight
When we found dirty pictures on the street,
And your friend, one vital year older, so
Proud to show us his first ejaculate.
How in Ajaccio we watched the moon
Landings, gathered around a tiny screen.
And later in the mountains, you locked me
In the outdoor loo for forty minutes,
And I, enraged, punched you hard in the face.
While you, fought back without inflicting pain.
Do you remember
When we met again, at fifteen,
We talked all night of girls and music, while
Listening to Doors’ Riders on the Storm
With your broken motorbike by your bed;
And when restored, I rode pillion,
Waist gripped, at eighty miles an hour
In the early promise of a June dawn,
Through sleeping boulevards and up narrow streets,
Passing the swish of street cleaning machines.
And scattering pigeons before our roar.
Do you remember
When I drove to Paris to see you
With Oxford friends, and you took us
To Jimmie’s, and we were amused to see
Rod Stewart with Britt on the dance floor.
You now so smart, polished in black tie,
At ease sipping champagne from cut glass,
A real Parisian Man About Town,
With your crowd of sophisticated young things,
And a diary full of young girls’ dreams,
But it was not to last, for a few months later…
Do you remember
That Oxford phone call, when in gentle tones
My father told me, over my mother’s
Kitchen tears, what had happened.
It’s strange how words can, instantly suck one
With such force, into an abyss so dark
That, phone in hand, I could hardly stand;
How your friend’s Alfa hit a tree sideways.
And you, in a three week coma in Limoges,
Without your oldest friends by your side,
Do you remember
The church in the Avenue Victor Hugo,
Packed with elegant suits and summer hats
As if for a wedding; and then the shock
Of seeing you boxed in that green casket,
Shouldered and gently carried up the aisle
To Albinoni’s Adagio in C minor.
But proud that you had eight hundred mourners.
And I, with your two girlfriends draped on my arms,
Relieved that I didn’t break at my Reading.
Do you remember
How later at La Noé, we laughed till
We cried, at hitting a poor little rabbit
On the way to the church, where alone, you
Rested in candlelight before your burial.
How the next day the pallbearers struggled
To lift you into the mortuary.
And I too, was buried in cold pressed stone
That day; for long months after, my body
Spoke of the ulcerating pestilence
Of shock, and even the sun wore a veil.
Do you remember
How for all these years since, you lightly stepped
Into my dreams; and I, convinced that you
Had never died, but were hiding somewhere,
Dreamt to show you alive and well to all,
To celebrate your return unharmed,
A happy Prodigal Son.
But you never reappeared.
So this is for you, dear Emmanuel,
Always to be young and twenty-one.
From Here I stand published in 2015
A poem with no name
A poem with no subject
A poem with no direction
A poem white with emptiness.
From Here I stand published 2015