Surviving chronic pain

PART 1 THE DESCENT

A tale of Gurus, toe-nails and the ego’s revenge.

Unexpectedly, I find myself in Corfu town in late July at Rex’s, an excellent Greek restaurant behind the elegant flats built by Napoleon for his troops in 1814. These now form the charming Rue de Rivoli style centre city with their oversized hanging gas lamps. I say, unexpectedly, because I was supposed to be with some Italian friends on a boat for a few weeks cruising around the Ionian islands, as I had done before in 2016, But I had had to abandon my plans after one day due to a minor toe injury, which required that I didn’t swim for a while. So the next morning I repacked my bags and left the boat moored off a beach on the delightfully underdeveloped island of Erikoussa. and took the fast ferry back to Corfu town. Once there, I rented a studio in the old part of the city for a few days, and finding myself alone, with the beaches off limits, my thoughts turned to writing an activity I had stopped in 2017. So I went out one morning, bought a notebook and pen and ensconced myself in one of Corfu’s many cafes in front of the park, ordered a cafe freddo and got started.

It has been exactly two years since I last posted anything on Facebook or wrote a blog. The purpose of this piece is to fill in this gaping trench of time. I now feel the urge to share my experience of this challenging period of my life for a number of reason; firstly, it might, by reliving it on paper, reveal something of value to others who might be facing their own difficulties in living in poor health, or know someone who does. I find those periods of our lives that pass effortlessly and happily tend to be, paradoxically, rather bare and parched gardens of the soul. Other more challenging times, where our mettle as human beings is tested to breaking point and beyond, tend in contrast to be more interesting and thus worthy of exploration. Secondly, I would like to frame what appeared to me as a series of frighteningly chaotic and random experiences into an ordered universe of chronology and meaning. I find that overlaying painful memories with a meaningful narrative can alleviate the burden of suffering or at least make it more tolerable. Finally, I hope perhaps to find from the singular and unique experience of one person, something that is applicable, useful and universal.

The outer shell of this story is a tale of physical and psychological hardship arising from the emergence in 2017 of back pain that soon became acute, chronic and all consuming, and how I struggled to cope with the challenges it presented. It is inevitable that we will experience the body in a state of distress at some point in our lives. It is how we respond to this situation, what help we receive, how useful it is, and how we respond to that assistance that determines whether we survive the ordeal or in some sad cases, not. But above all I hope to demonstrate that behind the most mundane and quiet of lives spent in the centre of a big city such as London, a ferocious battle can be fought between pain on the one hand with its pull towards oblivion, and love on the other, pulling towards life; namely my love for my family, my mother and my sister, my beloved godfather Ronnie, my cousin Raymond, and all my close friends, and their love for me in supporting me in whatever way they could. Thus, at its heart this is a love story; about the importance of relationship because it is now clear to me that when all seems lost, really mean lost, that the underpinnings of love that link us to others in this world can be the critical medicine that keeps one alive in the face of the unliveable.

Because the events I am about to describe occurred over two years, I shall break up this story into three parts, organised as if it was a scuba dive. In fact a dive into some of the stranger and darker pools of life. The first part which I call the Descent described how these events unfolded, the middle part which described what life is like when one is deeply challenged in the apparently hopeless, and finally the Ascent back to life as we broadly all know it. So really I am taking you on a journey and together we shall see if the following of this tale has been of some use.

I shall begin this story in a cubicle at UCL hospital in London in October 2016, when a nurse came in to explain my scan results and she asked me what did I know of my condition. After explaining that I knew I had localised prostate cancer and that I suspected we might have to repeat the localised procedure I had had in 2014 to control it, she proceeded to strip me of my illusions by telling me that cancer had spread in the lymph nodes up to my lower diaphragm and that they were very sorry but all they could offer me was palliative chemotherapy. I was struck by the oddity of being given what felt at the time as a death sentence, by a registrar nurse rather than a doctor. I left the building in shock and had the difficult experience of communicating this to family and friends, hopefully a little more tactfully than I had been told. In December I went skiing with two old school chums to my favourite ski resort, thinking this might be my last ski holiday. So we went to Zermatt in Switzerland and the day after we got back I started chemotherapy, which at the time I treated as a bit of an adventure. During this period I often experienced mild euphoria or exhilaration as if something exciting and challenging was presented to me. A wise friend of mine suspected I was in a state of denial and this was my response. At no time was I depressed at my situation. On the whole I survived it psychologically pretty well, staying positive despite a tough week in hospital when the doctors placed me on the septicaemia protocol, an experience I wrote about in my last blog in 2017. I also managed a couple of weekends in the Alps with the help of a couple of good friends. It was there that I learnt about the effect of altitude on someone undergoing such treatment. Namely that it is a poor combination.

Nevertheless within a week of finishing chemotherapy I flew to Portugal in May to attend a week’s silent retreat, led by a rotund charismatic Caribbean man from Brixton who seemed to be able to create a very loving group experience, while teaching the principles of no-Self. The reason I attended this event, and a second longer one in August, was to try to come to terms with my fear of death, namely by exploring the question “who dies” through meditation, silence and opening the heart. I thought that if I could realize this understanding of No-Self then all fear of death would disappear, This was a wildly optimistic plan and I was soon disillusioned of this goal. However , silent retreats are by their nature powerful as silence is an effective state in which to sidestep and neutralizes the Ego, with its many faces of self-aggrandizement. In a silent environment, where stress could no longer be evacuated through conversing. I found at both events that my mental chatter increased heavily the first few days, with lots of critical judgements about the event and people there, but then the mind quietened down and a feeling of peace emerged, which then allowed deep feelings to surface into consciousness. These would emerge towards the end of the three hour Satsang (sittings) when beautiful live music would be played. In my case these took the form of releasing old grief, each time finding the soft melting into tears somewhat beautiful and exquisite experience even though my mind had absolutely no idea what I was shedding tears over. With hindsight perhaps it was a heightened feeling of lovelessness in my life that contrasted with the public and evident love that was being continually expressed by participants and staff. Ultimately it was irrelevant as to why these particular feelings emerged: it was just good that sadness was released.

In the week following the retreats I stayed with my friend Carlos in Lisbon and the effects of the event continued. Both sporadic tearfulness, waves of gratitude and love swept through my consciousness, but also intense anxiety. This was new to me and I could only surmise that my sense of identity, my ego felt profoundly threatened after spending days in an environment focused only on the heart, with the ego cast as the villain. Almost an entity that could when threatened react quite viciously in its own defence, in its existence in my own mind. The anxiety I believe came from the fear of self-annihilation. The retreat guide warned us that we could expect a strong reaction from the Ego following the “pruning”effect of the retreats.

Coming back down to earth, I developed an infection under a toenail during the first retreat and once back in Lisbon I found myself repeatedly going to hospital for treatment. Fortunately my host Carlos had a friend who was a senior doctor at one hospital so I was very well looked after. But this infection led firstly to sitting awkwardly during the last days of the retreat then also limping for some days after as I was unable to wear shoes.

The net effect of this infection combined with lengthy periods of daily sitting on the retreat on top of the chemotherapy led, I believe, to developing sciatica when sitting for long periods in cars and planes during June and July, a condition that steadily worsened through the summer of 2017. It was further exacerbated by a stressful time looking after my elderly mother and the inexperienced but overly enthusiastic hands of a local osteopath and blossomed into the dark flower of centralised and fully fledged lower back pain by the beginning of August. And it was with this pain that I then set off to Lisbon from Marseilles for the second retreat.

This event took place over ten days at a,n Ashram near the Algarve and I participated with the help of their medical team by lying on the floor on my back in a tent like structure adjacent to the main hall, watching the meditations in the next hall on a television, all in 40 degrees of heat. By now I was more religiously taking paracetamol and ibuprofen than seeking enlightenment. Nevertheless I remember on one occasion I was doing a standing meditation, as I now could no longer sit comfortably in a chair for more than five minutes, on a hilltop, looking over the lush but dry southern hills of Alentejo, and in the stillness I heard the sound of a dog barking and for a brief instant I had a flash of insight into what the group guide was trying to impart, namely the absence of Self at the core of our being. I noticed that there appeared to be only a string of sounds, but no listener. My personal sense of self only existed when self-referenced in mental thought. That sound was registered in my field of consciousness as if recorded on a blank tape with no personal interference. Anyway, the insight was fleeting, the sense of personhood returned almost immediately. and this experience, while profound, seemed to have no apparent consequences.

Meanwhile my back pain continued to worsen and once back in Lisbon, I started to panic at having to spend days on my back. I was staying with my friend Carlos and on the first night at his rambling family house outside Lisbon he gave a party. I remember having to leave early and retire to a room as I was unable to stay sitting for the dinner. His cousin a doctor soon arranged for me to have a small quantity of Tramadol, a moderately strong opioid, and Valium and despite this, the pain accompanied by surges of anxiety continued to worsen, specially when sitting. I remember one day when my host Carlos and I rushed around chemists trying to get pain injections, something that is possible in Portugal, driving around in a car in an area with a lot of painful speed bumps. and the relief when one chemist did offer this service. And it was then that I noticed an unusual phenomenon; walking into the chemist, assisted up the steps by Carlos as my legs seemed to get rigid, I could hardly walk my spine had become so stiff. But once the injection was administered I immediately walked out normally and unaided. It appeared that the pain itself was highly sensitive to my mental state. Anxiety or relaxation drove my back experience. Nevertheless I remained convinced that my distress had a physical cause and for six days in a row I had these painkilling injections in the buttocks. I was very concerned as to how I was going to get back home to London. I called my GP in the UK for help but she could not offer any assistance. Two friends offered to fly out to accompany me back which was very kind, but I decided I could do it with the right medication, and I was convinced that doctors in London could give me a diagnosis and would be able to assist me. So after the last injection and with 10 gr of Valium I got myself back to London. My sister organised for me to see a pain consultant within a few days but my hopes were soon dashed. After an examination he could find nothing obviously wrong. And that was the pattern with ever more intrusive examinations, scans, x-rays, MRIs, in the months that followed.

As August turned to September I saw a number of pain consultants, some suggested I saw a psychologist but I believed that exercise could rebuild me and free me so I started working with a physio in Notting Hill Gate. By early October I had reached the limit of over the counter painkillers with their mild codeine content, and on October 10 a day seared in my memory, I panicked at the level of pain that overwhelmed me one morning and rushed to see my GP who sent me straight to hospital for an X-ray. Again my body became strangely rigid with fear and distress. Ironically, it was in A&E that I had my worst peak experience. Kept waiting in the hospital corridor I was able to lie down on a metal bench, but weeks of worsening pain finally boiled over into total panic, a feeling that I was drowning in pain. I had no control as to when I was going to see a doctor and that feeling of powerlessness which I had first experienced prior to getting those injections in Lisbon intensified and I started to pace the corridor, my back mirroring my increasing distress. I began to beg passing nurses and doctors for help, but they just told me to wait. I remember thinking about running head first into the wall to knock myself out, and wondered if not seen soon, whether I would end up running into the traffic outside in the hope of finding a suitable bus or lorry speed to end my turmoil. Finally, and it was only an hour, I saw a doctor and immediately my pain began to abate in his calm presence. After discussions over the telephone I was prescribed Tramadol again, and Oramorph, morphine in liquid form for pain peaks. As at the Portuguese chemist I left the building calm and almost pain free, my anxiety having drained away. It was as if my mind was driving my pain experiences, yet I could not accept such an idea, pain without physical cause. Nor did I make any connection with the retreat that I had completed only a few weeks earlier.

In constant pain, unable to sit for long, the days turned to weeks and then to months. The initial panic at finding myself unable to live doing all the things I used to subsided first into determination and then gradually into despair. By the end of the year I was finding it increasingly difficult to lie on my back on a bed and the new year saw me turn to my sides for the ever reducing orbits of comfort. Travel around London became challenging and I frequently needed to take a Valium just to do the 50 minute journey to stay with my sister. Often the anxiety of travel meant I was coping with near peak pain capacity, with the ever present fear that I might become distressed and then cause unwanted attention on public transport. I frequently took refuge at my sister’s flat in North London at weekends, as I found her company comforting. For six months I would go there with the bottle of Oramorph in my bag just in case, though I never used it there. John, my sister’s partner, generously shared his time with my sister with me and while I tried to give them as much space as possible, it was always a tension for my sister to split herself between her partner and me. At my sister’s flat I would rest, listening to the calm and soothing voice of Evoria Cesare as she sang her Capo Verde songs. I took solace in the ordered universes of popular culture, namely Thursday evenings watching Death in Paradise whose identical structure each week I found comforting, as I did with watching Columbo on Sunday afternoons. Both shows dealt with death but in a gentle and tidy way and the villains generally went quietly when identified which met my need for world without cruelty or evident violence.

My daily routine began to revolve around the 4 to 6 hour opioid cycle of medication and woe betide should I have had the temerity to forget a dose. In fact, I never did in the two years that followed. The pain would leave me alone at night, but each day by the time I reached the shower my new companion was calling attention to itself, and thus hour by hour there was a battle between the pain and me. The former demanded recognition and attention, feeding off the latter to grow in intensity until mitigated but never silenced by medication, on the one hand, and on the other I attempted to function as normally as possible. That meant seeing my physio twice a week, other doctor and healer appointments of one kind or other in the week, shopping in supermarkets but getting the food delivered, and getting to the pool and back safely in the evenings. Gradually I noticed patterns emerging. Stress worsened the condition, as did queuing in any context, such as supermarkets. If I could distract myself pain lessened. If I was in conversation with someone I noticed less pain. So this unwanted guest in my life became first my torturer, and finally my teacher. It was as if I had a small demanding anxious child within who threw tantrums of pain that laid me low if I did not respond quickly to its needs. Daily fear of flare up accompanied me throughout the day. Any change of routine such as an invitation to dinner, or visit to a gallery was fraught with danger and I soon learnt to decline such possibilities. And thus in only a few months my life shrunk into a very small anxiety filled world where the daily minute by minute obsession was a constant self referral into physical pain sensations. All the lofty spirituality had dissolved into a cramped and desperate existence, a descent into a pressured and claustrophobic darkness.

To be continued in part 2.

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Into the Silence

Released from my medical treatment which had kept me in London, I immediately flew to Portugal for a silent retreat to explore the question mentioned in my blog no 1 (Ten reasons to be positive), namely the perennial one of who is it who dies? But before that can be answered, one must establish clearly who is it who lives. 
The retreat was held in the hot dry region of Alentejo, two hours south of Lisbon in a large eco village with a 200m pool and organised with comfortable cabins around the central reception area. Just as well the place was well organised as there 800 people who had travelled from all over the world to address this issue.

In essence the purpose of this retreat was to experience one’s true nature hidden behind one’s usual personal identity or sense of personal self. While the philosophical method offered was the Indian tradition of Advaita Vedanta or the path of « clear seeing », a person who was familiar with silent retreats of any denomination would recognize its essential elements- no distractions, meditation, yoga and question and answer sessions with the guide. No distractions meant no speaking, no eye contact, no reading or writing. The purpose of these restrictions is to allow space for just being in the moment, allowing all negative or suppressed mind states to emerge into consciousness to be cleared away by awareness.

My response to this programme was initially somewhat hostile as my egomind went into resistance. For the first few days, I was highly judgemental of my fellow participants and the guide, oscillating between irritability, boredom and even looking forward to leaving. But little by little I began to sink into the contemplative space and to listen more to what the guide was saying in the “Satsangs”- sessions of self enquiry in the form of dialogue between participants and the guide. On the fourth day spontaneously tears began to be flow periodically, what I call “meltings” so gentle that they were very discreet and I realised that there was some mysterious process at work where I felt myself marinating in a very gentle and loving energy field. It was like the earlier agitation of the mind was anticipating this very quiet descent into the heart. 

By the end of the retreat I felt much quieter, more spacious in the silence and grateful to everyone who had organised the event and looked forward to repeating the experience at some future date. 

I cannot say that I have experientially answered the question that drove me to this retreat but I have had more than a few clues and glimpses. It’s a long road ahead but the journey to the freedom and liberation and yes joy, encapsulated in the answer to the question who lives motivates me to go forward.

Trekking in Chemoland



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. 

Coming home to Sauze ( Italian version)

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

You don’t deserve that I die here

The malaise came on suddenly at 2200 meters

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. 

Coming home to Sauze

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.

Baptism of light

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. 

News from the Front


Cheating death by needlework

Chemo cycle 3 week 2

Monday

 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.

Tuesday-Thursday
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. 

Friday
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. 

Conclusion

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.

  1. 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.

10 reasons why a terminal diagnosis is not bad news

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.

The poet

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.