"Not everything that is faced can be changed, but nothing can be changed until it is faced" - James Baldwin
Thursday 15 November 2018
A View from the Sheets
St Barts: FEBRUARY 2018
My wife Anne and I had a late lunch at Apuglia, an Italian restaurant behind London's St Bartholomew's Hospital. I had tagliatelle with porcini mushrooms and a glass of prosecco. There was a bicycle on the wall, for art not transport. I wasn't going to be travelling anywhere.
It was early evening by the time I had been 'processed' and taken to the pre-op ward. After Anne left for home I calmed my nerves by playing a Tibetan bowls recording through my earphones. I tried to meditate, but it was impossible.
In any case there were plenty of distractions; stethoscope on chest and back, blood tests and blood pressure checks and a visit from the anaesthetist. I was given two razors and asked to shave my chest, arms, legs and groin. It reminded me of plucking feathers from slaughtered chickens. Not a pleasant task but painless. The pain was to come later.
The next morning my chest was sawn open, my heart was stopped and blood flow was directed to a heart-lung machine. My body was cooled down and Anne tells me she was present in intensive care when they brought me back to consciousness by warming me up. She said that the nurse threw a switch and I started to twitch like Frankestein's monster. My eyes, she said, looked like the 'living dead' and she was afraid that I was about to sit up and pull out the many tubes and wires inserted into my body.
During the three-hour operation my aortic valve was replaced with cow tissue, leaving me ever grateful to my reluctant and gentle-grazing posthumous donor.
Of course I have no memories of my time under anaesthetic except to confirm these words from Diogenes: 'Where there is life there is no death. Where there is death there is no life.'
All I can remember from my time in intensive care is the button I was told to press when I needed a morphine shot to ease the pain.
Two days later and in the High Dependency Unit I was now conscious and taking note of my surroundings. Not very pleasant as I seemed to be connected to multiple monitors as well as tubes inserted into my stomach, neck and groin and with wires connected to my heart.
I spent two nights in HDU and it was exhausting. Any attempts to sleep were stopped by the constant checks; temperature, blood pressure, blood sampling and medication administered, as I remember, through the tube in my neck At one point the patient beside me went into a cardiac crisis and with great speed the 'crash' team arrived. I wasn't in a fit state to count precisely, but was told later that there would have been fifteen in attendance. Strangely comforting to witness such positive pandemonium in the service of one continued life.
I can remember telling a nurse I hadn't had a pee for ages. She laughed and invited me to look below my pyjama trousers. My God, there was a tube inserted into my penis. I remembered a friend of mine who had once suffered terrible pain when this was removed after an operation who told me, ''My cock never gave me so much pleasure as it gave me pain when the catheter was removed.'
I decided I wouldn't rush this procedure.
After five days on the post-op ward I was ready to go home, but the final task was to remove two 'pacing' wires wrapped around my ventricles and connected to a monitor I had to carry around with me. I had thought that the two plasters on my stomach were stitches, but a nurse told me they were the entry points for these wires and that I must remain in hospital for twelve hours after their removal. If pulled out incorrectly I could die.
Brian Piniera works in stem cell research at the hospital but, from time to time, turned up on his old ward to help out as a volunteer. He is well known and well liked throughout the hospital. He was visiting me when I was given this information and offered to undertake the procedure. I was happy to have him do this tricky task.
It wasn't painful, but it was frightening as I watched him start to draw them out. They were each 20 cm in length and have to be removed slowly and with a steady hand. Brian is an incessant talker, but I urged him into silence and shut my eyes.
He is Filipino as are many NHS workers. My heart surgeon was Egyptian. Four years earlier when I had had brain surgery my surgeon was Nigerian, assisted by Italians, Spaniards and Brits of multiple ethnicities.
Here I am writing this. Still alive and conscious that every breath I take is a gift of life and time. My cow and the skills of my surgical team have given me ten to fifteen years, before I might need this operation again, but I have been told one of my two carotid arteries is 50% furred up. So who knows what I have left to me.
It's quality I must go for now. A friend of mine helps run an organisation called The 'Long Now'. They have constructed a clock which ticks once every 100 years. I used to be cynical about the project, but now I understand that perspective much better.
Whatever life is left to me I owe it to myself, to my loved ones and family, to not let it go to waste. I will try to put back together my dysfunctional family. I will write more. Much will be about the struggles we all face to save the NHS, a health system based in Aneurin Bevan's words on the principle that, 'No society can legitimately call itself civilised if a sick person is denied medical aid because of lack of means.'
I am lucky to be a citizen of a country that can still offer me free medical procedures that have kept me alive. I was very aware of this after this operation and what needs to be done to save our medical services from the privatising predators who are creeping in through the cracks inour defences
As recently as five months before I was admitted, Barts were responsible for their own catering. Brian told me what pride he took in serving food to his patients and how this was a central part of nursing care. Today this has been handed to Serco, (company logo "We Care'). As well as hospital contracts for food, cleaning and porterage, they run our prisons and military centres. Their annual revenue from healthcare alone is over £1.4 billion.
I love the idea that the military is listed alongside healthcare and 'other citizen services'. Also nice to know that the inmates of Wormwood Scrubs receive the same food services as we get in this hospital. I wonder if they have the same problem – a shortage of small spoons. In the Scrubs they may be being put to use tunnelling their escapes and probably don't ask why there is a shortage. There was no answer to me when I asked this question.
Breakfast was tepid tea or coffee, cereal or porridge and toast. As I bit into the cold, spongy “toast” I could imagine Serco executives meeting to discuss how to cut back their costs to increase their profits. 'Let's start with breakfast'.
On my ward I got to know my fellow patients. Barry had already had three heart operations when he arrived at Barts for his fourth. His operation lasted 28 hours and they 'lost' him three times. He told me of his out of body experiences which had traumatised him and made him scared of going to sleep.
He had been born in Jamaica and next to him was Erroll, a Trinidadian bus driver from West London. They would chat about youthful memories of their island homes and their love of the calabash tree, its soft brown bark home to multi-coloured orchids. They told me that these trees, pollinated by bats, grow on hillside pastures, along roadsides and wherever there are human beings. The tree has many medicinal qualities. The NHS is our calabash tree.
What memories do I take away from the time I spent at Barts? Not the operation and its after-effects of pain and worry, but the nursing care I received with such commitment and humour. The nurse pushing my bed down a corridor who I got chatting to. On hearing I was a writer, he brought my bed to a halt and, with a wonderful smile, quoted verbatim from Gabriel Garcia Matquez's 'Love in the Time of Cholera. 'Age has no reality except in the physical world. The essence of a human being is resistant to the passage of time. Our inner lives are eternal, which is to say that our spirits remain as youthful and vigorous as when we were in full bloom. Think of love as a state of grace, not the means to anything, but the alpha and omega. An end in itself.'
Then there was the nurse replacing my chest bandage who wanted me to breath in deeply. 'Puff out your chest', she said, 'like a Robin Redbreast.'
I wrote this poem soon after the operation. It is dedicated to Dr Wael Awad, his surgical team, anaesthetist and all nursing / ancillary staff at Barts Hospital in respect for their care and skills.
My blood pump was stopped
while a machine took over
the job my heart had done
for almost 73 years.
A cow's pericardium replaced
my narrowed, furred valve
that no longer moved like
a sea anemone's fronds.
This valve was given without
agreement or consent
so I made a vow to my dead donor
to never eat beef again.
Last time it was a subdural haematoma.
I escaped with my brain intact.
That involved an earlier pact,
made with myself, to act wisely
with attention to my herd.
My plan of action now
begins with breaking through the fence
to arrive, together, in greener pastures
St Barts: SEPTEMBER 2018
I am back in Barts, seven months after my operation. I have had a stroke caused by an infection which is attacking my new heart valve. This time I am going to write a hospital diary.
…. Barts Hospital is a microcosm of UK society today. It embodies all the best and the worst. The NHS staff, from the doctors, surgeons, nurses and laboratory workers, to the caterers, cleaners and porters, work with love and commitment to the patients. They are of all nationalities, from across the EU, and from Ghana to the Phillipines.
.... The new Barts King George V building, where I will now be a patient for many weeks, is alive with all this and I have come to love and respect all those who work in the NHS.
…. The reason the senior nurse on the ward is called 'sister' is because hospitals were first opened in convents and priories. St Bartholomew's Hospital is no exception. Situated between St Paul's Cathedral and Smithfield meat market, the area has been a place of butchery and healing for hundreds of years. The Scottish rebel, William Wallace, was hung drawn and quartered here – just a gentle reminder of how cruel things can get with our rulers.
…. When Native Americans visit a friend, they symbolically place any troubles they have in a willow box at the door so they don't bring them into another's life. I mention this because hospitals are suprisingly cheerful places if you ignore the illness and suffering that accompany the lives of many patients.
The reason for this is that the people who make up the NHS—the consultants, doctors, nurses, cleaners and caterers—all have their own troubles, but they are experts at leaving them “in the willow box” as they enter the hospital.
From my bed I look out on The Old Bailey and to its left are the offices of Merrill Lynch. I would like to move that banks bosses to stand trial a short distance away at the Central Criminal Court.
…. Hospitals have a lot in common with prisons. The attention to numbers – the counting of days. One difference. A prisoner can mark off the days to his/her release, but in hospital there is, as in my case, no end date so I count forward – today 25 days completed. The slow passing of time allows for reflection and thought. And time to write these blogs.
…. When you have been in hospital for a long time you learn a lot about the other patients and about the NHS staff. Here are some examples. The nurse who is always smiling, always ready with a joke and comforting words. When I comment on this I learn that her husband died when he returned to their African home to get work and rebuild a future for his wife and two sons to return to.
The low paid Serco worker who gives me an early morning cup of tea, whose half-day is seven and a half hours and full day is eleven and a half. The nurse who wakes me every morning to do the daily ECG. She is always singing and when I ask her why she is so cheerful answers, 'what choice do we have?' The doctor who is part of the Consultant's morning visit team who sees I am upset by the news I am given and who returns to my bedside after they have moved on to offer me reassurance. The patient who, uninvited, sits beside me to tell me about his army days in Malaya. I can't stand his Empire memories, but when he turns to his love of gardening he becomes human again. Mohammed who keeps me awake all night with his involuntary dream-screams. The next morning he apologises and we go together to the nurses desk to ask for a solution to help both of us.
He is moved to his own room. A dear man and I hope he recovers because he has been so ill.
… We all deal with our hospital depressions and fears in different ways and we all have mechanisms to combat them. I am fortunate because I have my wife, Anne, who is my rock and my island. I also have other family and many friends who visit me.
Others are less fortunate and seem to be entirely alone in the middle of their illness and the worries that accompany it. They are entirely dependent on the willow box.
…. During both my stays in hospital this year I have not been short of visitors and have been sent cards and messages of support from across the world.
Both lapsed and active Catholics have lit candles in churches, atheist 'Muslims' have attended mosques and offered 'dua' for me, distance healers have healed me from south west UK to south west USA, Jews have played Leonard Cohen's 'Halleluja', Buddhists have meditated on my behalf and musician friends have brought me guitars and played for me.
…. One of my first questions to visitors is to ask about the weather. It's hard to tell from the inside of these glazed windows. Yesterday was apparently very warm and and I was told it was 'too warm', 'unusual weather' and so on. Here I am outside these experiences, looking out at them, but not a part of them.
This curious situation brings me to another 'reflection'. More than ever before this hospital stay has made me acutely aware that I am observing something quite troubling out there. The advance of barbarism. Brought close to me in the comments and conversation from my visitors. Yesterday a friend telling me she was heading off from here to Notting Hill for a Grenfell march and that the surrounds of the massacred building are full of toxins, as found at Ground Zero in NYC. Other topics passing through my hospital room range from the impending struggle over the decline in social security payments to the twelve, or is it thirteen, years we have left to save our world from global warming.
And have you heard that the 1% who are responsible for this are buying up property in New Zealand? I am sure you have your own concerns which you can add to this list.
…. I was once a member of the International Socialists – today's SWP. In my time I have been an anarchist, Trotskyist, syndicalist, Nihilist and today a Desperatist. Anyway, their leading cadre was Yigael Gluckstein, an Israeli revolutionary who changed his name to Tony Cliff. He would often open his talks with this. 'Comrades, we are all on a train. The rich are eating caviar and sipping champagne in the restaurant car. The middle class are asleep in their couchettes. The working class are crammed into the corridors. But we are all on the same train. And it is heading to barbarism.' I used to think his view was extreme. Surely we had plenty of time to stop the train. Today I think he was thinking along the right tracks.
…. I have to be connected to the computer and carry around a bulky console. Taking a shower with it is impossible and the toilet even more so. They have recently offered us ‘carriers’ and, after a short self-training exercise, sorted out my own system. This involved cutting away 50% of the carrier straps to make it useable. I must check who got the contract for this piece of 19th-century technology. Must be a US company because it's like a pistol-holder.
…. Today I woke up without a fever. This increases the chances that I will not have to face a new operation. (My consultant leans heavily in the direction of this option). And the sun is shining! If things are getting better for me it is largely due to the NHS staff here.
…. I don’t get much sleep, with new drips, blood pressure and ECG’ arriving too regularly, but all delivered to me with humour.
…. If this country closes down who will replace the Nigerian surgeon who did my brain operation, the Egyptian my heart valve replacement, the Sudanese checking my blood cells, the nurse who gets me a cup of tea after taking my ECG. Who?
…..Yesterday I was fitted with a Power Picc, which allows for blood tests and samples without the need for renewing catheters in arm and / or wrist. Progress of sorts.
…. You don't have to be in hospital for long to realise it is the dedication, long hours and humour of NHS staff which keeps it all going. I watched Jeremy Corbyn speech at LP conference. What the f—k are we waiting for?
…. I woke up at 3 am this morning and tried to go to the toilet for a pee. Impossible. My pyjama trouser's one remaining snap-on had now joined the others on the pyjama top and could not be snapped on or off. I tried to make it to the ward loo, one hand clutched to my trousers, the other to the electronic monitor.. My alarm went off and I sat back on the bed and waited for the nurse. She told me it had been set it off because my heart rate was too high. She then got me new pyjamas and reset the monitor. Now I have a urine bottle. We are supposed to keep mobile and be self-caring, but electronic alarms and 'snap-neither-on-nor-off' pyjamas conspire to keep us immobile and set off alarms.
…. Just had my Serco breakfast and wonder if anyone can tell me who has the privatised contract for NHS pyjamas? I will never write about this or any other hospital without praising all hands-on NHS staff followed by my curse against this bankster government.
…. I need a scapegoat and in my case it is the goat. The microbiology lab here at Barts hospital has concluded that the bug which got into my heart valve – the bovine (cow) valve which was fitted here in February, is of the Equine Streptococcal strain. So we have cows, horses and now, my theory albeit unbacked by evidence – goats. I spent a month last summer with my Bosnian family at their home outside Mostar. After I met my wife Anne on the Croatian island of Mljet I picked up a virus which lasted until my stroke five weeks ago. There were no horses on the island but the lab has said that other animals share 99% of their DNA.
There are goats in the area, some of them once owned by the family we stay with, but that was some years ago and the goats have long since taken themselves up into the surrounding woods and hills.
But back in Mostar there are goats-a-plenty. They are on the hillside at the end of Oha and Masa Maslo's garden where I stay when I am there. Twice a day a goat-herder walks his animals slowly across my eyes. I hear their bells before I see them emerge from the trees onto the sage-covered rocks. Even when I can't see them I hear their bells as I sit on the terrace which faces onto a garden full of cherry, pomegranate, figs and walnut trees.
Wildflowers in the nearby field attract Cleopatra butterflies, Plain Tigers and a profusion of Simple Whites. Bees from Masa's hives buzz in and out from the sage bushes the goats feed from. The hill rises up to Mount Velez and we seem to be at the base of a bowl, in a hidden valley which induces a feeling of remoteness, peace and isolation.
Of course this is all an illusion. The herder is a refugee from central Bosnia, eking out a subsistence living with the help of his animals. The hillside is still peppered with mines. The wildflowers in that field are there because the family who owned the land fled when the area was under bombardment.
I see and hear the goats, but's that's it. But the two Maslo dogs are free-range and spend time on the hillside. For sure they must tread through goat detritus. Lovely dogs, they jump up to greet me whenever possible and it is possible that they brought me the streptococcal.
But are the goats to blame for my hospital stay? Of course not. I am to blame for not building up my immune system after the open-heart surgery.
I won't make the same mistake again. I have been told that the Russian military developed Neuropeptide Bioregulators that are great as immune builders. So I will move east of the Balkans and seek help from the Russians. Then it will be back to sitting on the Maslo terrace, waiting for the goats.
… After three weeks in hospital and with the likelihood of at least the same again I have plenty of time in the company of my own thoughts. Plenty of time to observe the goings on in my ward and the lives of other patients. There are some here who are having a much worse time of it than me, medically and personally. I feel for those who do not have family or friends to visit them. The patient whose wife is disabled and housebound for example. Those without friends or whose family and friends live far away.
I am lucky. My wife is, for the third time in almost as many years, my life-saving presence and working hard to challenge my weight-loss with her supply of burittos. She is there on ward rounds to ask the questions I never thought to ask. Waits with me while I have the endless checks and scans.
Then my visitors. My family and friends who cheer me up and supply me with foods, drinks and other treats. Books of course. I start reading one when my attention is distracted by the next arrival. Of course pride of place, an ex-neighbour's collection of her poems which nearly rolled me onto the floor in laughter. Then those who give me distance healing and their prayers. My son who put together a music programme for me. My Bosnian 'son' who suggests music to get better with. Finally the staff here whose care and humour I have already written about.
And not allowed to escape without mention. The Barts nurse who became a friend when I was here for the operation in February and who regularly visits me and answers the questions I still need answers to!
…. Olivia Ellor-Freeman and Lydia Kortey are the Serco caterers on my ward. These two, along with their cleaning colleagues, always uplift the patients, if not with Serco food, with their presence. I love the way Lydia ignores our illnesses and, if someone is asleep when she is taking lunch orders, demands that they be woken up.
…. I can see the end of this tunnel now and hope to be home in two weeks. I have now been in hospital for 6 weeks and such a long stay has an interesting effect on you. You become ‘institutionalised’. By that I mean you construct ways of getting through the days and weeks. In my case I walk 30 ward rounds each day, a corridor that encircles all the rooms on my ward. 150 paces, so I divide it into three blocks of ten. 10 early in the morning, 10 in the afternoon and 10 in the evening. I plan the first at soon after 7am which means I walk past Lydia as she is preparing her breakfast trolley. This means I get given an extra early morning cup of tea! It also means I get known for this activity with the result that the doctors have stopped insisting I have the anti-coagulant injection at 5 pm. A sharp stab in the stomach which I hated.
…. Of course the hospital have their routines. Drip-feed drugs fed to my arm feed every four hours, night and day. Blood pressure and temperature every 4 hours, Cardiogram at 6 am every morning - and so on. Then there are the unexpected. The orderly turning up to take me to X-ray, cardiac tests I hadn’t been told about and so on. Of course I get to know all the staff well and we laugh and joke quite a bit. Visits from medical students etc.
Then my visitors. Most days I have friends / relatives visit me. My wife and they bring me real food as the stuff they give you here would put you in hospital if you weren’t here already! When left alone I read - at the moment a great book on the Spanish civil war, listen to music and chat with my neighbour - right now an Angolan geologist. But since I am long-term, they come and go and I am like the older relative, inducting them into useful secrets, e.g. how to get an early morning cup of tea. Of course my ‘bed-blogs’ - my stories on life in hospital which. Finally regular physio exercises. My stroke weaknesses are getting better, but my left hand is still numb and weak and I cannot play guitar. I have one here. This is the one late-in-life talent I am most proud of so my objective is that I will play it again, just not yet.
Damage to my left hand means that I can't grip the strings to make the chords and individual notes. If I was a professional musician this would be a catastrophe, but for me it is just sad. I came to the guitar late in life, even after spending much of my working life with music and musicians. Firstly with War Child and then at the Pavarotti Music Centre. I was enjoying being the oldest student of Deicola Neves and Dil Sandhu. They and all those at Camden Guitars have become my London Pavarotti Centre. So I will return there, will take more classes, will treat my guitar as central to my recovery. Will, hopefully before long, once again start each day with Autumn Leaves and Here Comes the Sun.
.... I am going home in three days after being at Barts for seven weeks. I have been told that Jeremy Corbyn is going to visit me. His office has let me know the date and time. I am amazed, but delighted that he is coming. He is my MP and I have known him for twenty years. When I was Press Officer at the Stop the War Coalition we would meet regularly, but I didn't count myself as being close to him and felt embarrassed that he was making this effort to see me. A friend told me that a haidresser in Notting Hill received a phone call from David Cameron's office. He wanted a haircut. This was after he had resigned as PM. Half an hour before he was booked in three burly gentlemen entered the premises and, without a word, started opening drawers and cupboards.
This didn't happen in my hospital ward. The door opened and there was Jeremy, hotly pursued by surprised and delighted ward staff. I had been careful not to le anyone know about his visit. Olivia and Lydia posed for selfies with him and he happily obliged.
I had a mental list of things I wanted to discuss with him - how was he coping with all the pressure, the Press hostility, the vicious attacks from the right wing of his own party, the false accusations of racism and anti-semitism. Not a chance. He wanted to talk about the Spanish civil war book on my side table and what had brought me into hospital. When, after an hour, he and his partner Laura said they were going home he asked Anne if she would like to join them on the bus . They live in Finsbury Park not far from our home in Holloway.
No burly men, no security detail, no driver. He is an exceptional man and quite unlike what we have come to expect of politicians. I hope he stays safe and and that we all work hard to ensure he becomes our next Prime Minister. JC4PM
Thursday 8 November 2018
heart of the NHS
Olivia Ellor-Freeman and Lydia Kortey are the Serco caterers on my ward. These two, along with their cleaning colleagues, are lovely and always uplift the patients, if not with Serco food, with their presence. I love the way Lydia ignores our illnesses and, if someone is asleep when she is taking lunch orders, demands that they be woken up. My message to their grossly overpaid Serco CEO - 'Their wages, hours and conditions are shocking. How do you sleep at night?'
Friday 2 November 2018
Subscribe to:
Posts (Atom)