Sunday, 13 May 2018

The Visit

I’ve been living in rural South Down for seventeen years. I moved back to the countryside as an experiment, after living and working in cities for many years. I bought a bungalow, surrounded by fields and farms, with views of the Mournes. My main fear was isolation. Instead, I got back in touch with the natural rhythms of the seasons and was welcomed by neighbours despite not having any family links with the area. There was one particular neighbour who I became close to. This week I was disturbed to learn that he was very seriously ill in hospital.

C had grown up on the farm down the lane. He inherited the land and kept sheep, despite having a management job in Belfast. He was one of those people who could successfully turn his hand to almost anything. In fact he had helped build my house. It had been constructed for his eldest son, who moved to America. I’m fairly practical, but this has limits. So when there was something that needed doing that was beyond me, to the house or to the half an acre that surrounded it, I turned to him. C would always have the solution to my problem and would sort it out promptly and effectively with a minimum of fuss. At first I tried to pay him for his time and trouble, but he would never accept anything. It took me a little while to realise that the neighbours’ economy was trade in kind. One good turn required another. I helped him out with tasks of his that required several hands, took my turn in the strimming of the grass verges of the lane and always mowed his lawn whenever I cut mine.

Some years ago he began to have bouts of tiredness and muscle aches. He put this down to ageing; he is a decade older than me, but a good bit fitter. So he gave up his job and lived on a pension and sheep-farming. These bouts persisted. He went to the doctor who diagnosed him with fibromyalgia and put him on steroids. The treatment didn’t seem to work and when he complained about this the doctor increased the dosage of the steroid.

Last year he was floored by a chest infection and was hospitalised for several weeks in Daisy Hill. His fatigue increased. Some months later the chest infection returned and he was again hospitalised. This time they began to test him for a range of other problems. After running many tests they could find nothing. They were again going to discharge him, but decided to refer him to a Haematologist at Craigavon. He was tested further and they eventually discovered that he had a rare form of blood cancer which attacks the bone marrow.

C was also told that if he had been suffering from fibromyalgia it ought to have improved on steroids in a matter of months. His early symptoms had probably been of the blood cancer and there was a clear failure on the part of the GP not to refer him for testing for other conditions (thankfully we are with a different GP). Because of this he had several years of deterioration before he got the correct treatment, which is a very expensive course of drugs that can only attempt to arrest the decline.

It was another chest infection that had returned him to hospital this time. His infection markers were high and his blood/oxygen saturation was dangerously low. He was being pumped full of different intravenous antibiotics and had an oxygen line into his nose. He lay on the bed in a side room, gasping and panting with the effort of talking. We spoke about the old days when he was fit and well and active. He realised that he would never be able to go back to them. All he wanted was to return home. But the prospect of that was remote.

He asked me how I’d coped with my cancer treatment (he had visited me in hospital). I said that I’d had it easier than him. I did have four big operations, but my incapacity, although painful and difficult, had always been temporary. I’d struggled to get well each time, but I’d never been continuingly incapacitated. I didn’t know how I would cope with the situation that he was in. I told him that the only strategy I knew was to take things one morning/afternoon/evening/night at a time and try your best. Given the challenge of his situation, it seemed a lame answer.

An auxiliary nurse came with a tray of food. C slowly ate some soup with mashed potato in it. I opened his small tub of ice-cream and he scooped it up with a teaspoon. I explained that, as T was away, I had to go home to feed the dog. I promised to visit him again soon. We clasped hands. He told me he would be very pleased to see me.

As I drove home, I pondered on this visit. I knew that C had given me a timely reminder to make the most of life when you are able, and not to waste time and energy on what might seem important but which really didn’t matter very much. What he wanted most of all was to be at home again and do ordinary things. There was no dramatic bucket list of foreign destinations to see.

The Ghost of Cancer Future had visited me. I realised that this creature would come calling for me one day. I fed Rex; he wagged his tail and licked my hand. I made my own tea and read a little. The late sun shone on trees coming into leaf. Birds sang. The mountaintops glinted. I was well and I still had time.



Monday, 30 April 2018

The Scan and The Results

The first week of my eighth year as a cancer patient has featured anxiety from the past and worries about the future. It started with a CT scan, my sixth since a tumour was successfully removed from my abdomen twenty months ago. The pathologist found that this tumour had a very slim margin of normal cells around it; only one millimetre, a dangerously narrow margin and far below the recommended surgical limits. Allied to this is the fact that you don’t feel a slow growing tumour when it is small. And it also doesn’t show up well on a scan. I didn’t have pain from either of my tumours until they had grown to maturity and were over six centimetres across. At scan-time these worries cannot fail to prey upon your mind and interrupt your sleep in the small hours.

Actually having a CT scan is nothing much; on the scale of painful and unpleasant things done to you in hospital it is at the low end. You have to arrive at the Cancer Centre one hour before the time of your scan. You sit in a waiting room full of people coming for scans and drink a clear fluid filled with iodine (and other stuff) that enhances the images. You have to drink two litres of the fluid, one paper cupful every ten minutes. Despite the room being full, it is deathly quiet; nobody speaks, we are all in our private places of fear. The only sounds are new patients arriving, jugs of fluid being dispensed and patients being called. I sit, sip and read my newspaper. Others surf the internet. Some stare into space.

When called, you are taken into a changing cubicle where you remove your clothes and anything made of metal and put on a surgical gown. The radiographer takes you into the scanning room next door. The CT scanner is shaped like a large ring doughnut with a long slim bed that slides you inside it. The scanner costs about a million quid. A scan takes around ten minutes. The bed slides you through the scanner and an automated voice tells you to hold your breath for some of the passes and to breathe on others. The scanner whines and howls like a gale as it spins around you. Then it is over and you can go.

The first thing I do is get something to eat and drink. You aren’t allowed to take anything for six hours before the scan. I ride the lift up the hospital tower to the staff cafeteria. The food is cheap and fatty. It’s remarkable how bad the food is for people who are charged with keeping us healthy. Off-duty, hospital staff could well be far unhealthier than us. Like many others, I indulge in a greasy fry. It hits the spot. As I slurp baked beans and chew my sausages, the worries begin in earnest. I have entered the worst and most disempowered stage, the anxious waiting for the scan results.

Normally you hear the results at a review appointment with the Oncologist, which takes place a couple of terrible weeks after the scan. As it is hospital practice to send out appointment letters two weeks beforehand, you usually get the letter for the review appointment around the date of your scan. I went home. There was no letter from the hospital. I waited anxiously for a couple of days. Then I rang the Oncologist’s secretary. You always get the answer-phone. I left a message for her to call me. She rang back the next day and told me that my scan had been done several weeks early and no appointment had been booked for me yet. She told me she would request an urgent appointment, but that the review clinics for the next month were very full. My heart sank and my worries spiked.

Several sleepless nights and unhappy days later, the Oncologist’s secretary rang me (after I had again left her a message). The good news was that she had a got me a review appointment, the bad news was that it was in a month’s time. Again my heart sank. But, she went on, she had spoken with the Oncologist and they had dictated a letter to me. She read it out. The crucial part was that the Radiologist had concluded that my scan was ‘stable’ with ‘no discernible change’. My heart leapt. I thanked her profusely. She had understood my problem and because of the long delay in me actually seeing the Oncologist had found a way of breaching the hospital protocol about not giving results over the phone. I suddenly felt very relieved and extremely exhausted.



Sunday, 22 April 2018

Copper Anniversary

Seven years ago today I was in Belfast City Hospital. I’d gone to A&E the night before after becoming unable to pee. I waited for a long time in severe pain with assorted drunks and men with head wounds handcuffed to coppers. The doctor put in a catheter but nothing came out, so he got a large syringe and drew out bloody urine with dark clots in it. I spent a long and sleepless night on a trolley, worrying about what was wrong with me and wondering why my life was cluttered with stuff that didn’t really matter. First thing in the morning a doctor from Urology arrived and decided to admit me.

Later that morning I was taken on a trolley for a CT scan. I was back in the ward when a different doctor arrived and drew the curtains around us. I had cancer, he said. He was quite matter of fact. I went into shock. It was a large tumour that had taken over the whole of my left kidney and grown further. The world seemed to close in around me. Do you have any questions, he said. So I’m going to die, I mumbled. Not necessarily, he said, plenty of people survive cancer these days. So what are my chances, I said. I’m afraid I don’t know, he said, and left. It was Good Friday. I lay on the bed for a long time. I was sure my life was at an end. I felt completely alone and didn’t know who I could turn to. My younger brother had died of cancer less than a year earlier. Eventually I picked up my phone and began to tell the bad news. I started with my, then, partner Joanne.

To cut a very long story short, my tumour had grown from the kidney into the vena cava and up towards my heart. I needed a very big operation, open heart surgery, to remove it. I was in hospital for three weeks during which a series of preparatory operations took place, whilst I waited for the big one. Joanne, friends and family rallied round. I had plenty of visitors. I also had to cancel all the Irish and British dates on my book launch tour that I’d spent so much time arranging (my first collection of poetry had been published a few months earlier).

After three weeks I was discharged from hospital. I was waiting for a slot in one of the three cardiac operating theatres at the Royal Victoria Hospital. A call could come at any time. I was told that I was in a delicate condition and should take things very easily. Joanne encouraged me to live at her flat in Belfast. At first this was fine. Then she began to show signs of disturbance. After four weeks, she had a mental breakdown. I had to look after her and arrange for her to get professional help. Then I went home to my own house and waited. After a week the call came. I was admitted to the Royal, signed all the disclaimers; the main risk was death during the surgery from loss of blood. The operation took seven hours with three teams of surgeons and I had three blood transfusions. Thankfully the tumour was successfully removed. I spent a further two weeks in intensive care and on the ward. I returned home, very incapacitated and in severe pain (which would last for over a year) but I had survived this ordeal.

Not long after I was called to see an Oncologist at the Cancer Centre. They told me that my prognosis was poor. Many people who had the large tumour that I had would not survive the first two years. This was a heavy burden that dragged me down. Joanne had come out of treatment and visited me regularly, along with friends and family. After a couple of months Joanne abruptly left me and I was completely on my own again. I found myself in a very bleak place. Slowly I realised that I couldn’t cope and turned to a cancer charity for help. Cancer Focus arranged counselling. This was a lifesaver. I learnt that I wasn’t alone and that the complexity of emotions I had were entirely normal for a cancer patient.

This became the turning point. After a year of counselling and recovery I began to rejoin the world. I started to pick up a few of my activities again. The two year anniversary of the big op came and went. And I was still around; alive and doing my best to kick. Shortly after I went to the John Hewitt Summer School, where I first met my dearest T.

A crisis shows you exactly who and what is important in life. Plenty of activities and former friends have fallen by the wayside. But what remains is deeper and more valuable. I do my best to spend time on what matters and not to waste it on what doesn’t. Primary amongst all of this is my dearest T, who is the best thing that has happened to me. I met her at a point of growth and redirection in my life and we have travelled far and deep together. Seven years is called a copper anniversary. And copper is the metal of good fortune. I thank my lucky stars that I am where I am in my life now and that I am with T. We live happily together in the here and now. Long may that continue.



Wednesday, 11 April 2018

Cuddle Therapy

We’re not long back from an extended Easter break over the water that was full of good things. We started in the New Forest and then drove a couple of hours along the coast to Brighton for a wedding. I hadn’t visited Brighton for ages and T had never been there. It certainly seemed to have become a very alternative town. The groom was the only son of my best friend, Phil, who I’d first met at secondary school. The groom, Nathan, and bride, Laurie-Ann, had been going out for a decade and living together for six years. They very generously had arranged for us to stay in their home over the weekend.

On the first evening we walked into town with Phil’s brother Terry and had an amazing meal at a vegetarian restaurant called Terre a Terre; a cornucopia of flavours put together most attractively. On the way back we paused at an alternative therapy centre and marvelled at the range of treatments and therapists on offer. The most intriguing was Cuddle Therapy, where you could spend your time with the therapist either talking about obstacles to physical contact or actually having cuddles.

I wondered how long it would take for Cuddle Therapy to become established in NI. We agreed that who you were actually cuddling was the most important consideration. T and I cuddled regularly everyday and always before going to sleep. It was a crucial part of our life together. We had both lived on our own and understood how lonely that can be. On the other hand, there were plenty of people I would pay good money not to be cuddled by; Boris Johnson, for example.

The wedding took place in the village of Firle in the midst of the attractive South Downs. It is an estate village and looks little changed from centuries before. Virginia Woolf once lived there and it became a hangout for the Bloomsbury Group. The ceremony was humanist in style; I gave one of the readings, ‘The Summer Day’ by Mary Oliver. The vicar was Peter Owen-Jones, who is also a poet and broadcaster. We walked from the Norman Church past banks of primroses to the lawn of the Manor House for champagne. The weather was cool, so after photos we went into the stables which had been converted into a large hall complete with oak beams.

After the speeches we had an enjoyable Mediterranean meal of kebabs, falafel, salads and flatbreads. I tried a glass of wine; the first since Xmas when my stomach, after all the cocodamol drugs, had a bad reaction to it. I was delighted to find no painful reaction, so I tried a couple more. Unlike many of the guests, I didn’t indulge in the free bar. But T and I danced happily with them to the live soul band. It was a lovely day. And a poignant one. Phil’s wife Jean had died of cancer almost five years previously. Her absence was keenly felt by all those who knew her.

The next morning we wandered down by the Pavilion and along the pier. We saw several groups of elderly Mods in parkas with roundels, but no Rockers. Perhaps they now only clashed for the overseas tourists in a sham-fight, like at Scarva. Then it was back in the car to the New Forest. And the very next morning we drove through heavy traffic to Hungerford for a family lunch that I’d arranged. Meeting up at the excellent Mediterranean restaurant Eliane were my brother, sister and several cousins. All in all we made a table of eleven. I hadn’t seen some of them for four years or more. We had a great catch up, took photos of each other and hugged before going our respective ways.

The purpose of our time away was to meet up with close friends and family and be part of a happy celebration. I guess the whole trip had been a type of Cuddle Therapy. So especially we’d like to wish Nathan and Laurie-Ann many happy years of cuddling together.



Monday, 19 March 2018

Valuing the NHS

I’m surprised at how regularly I meet people who complain about the NHS. To many people I suppose it is a large and relatively faceless organisation. And it does have undoubted shortcomings, such as the waiting times to see specialists for non-urgent treatment. But my experiences of the NHS have been overwhelmingly excellent and I’m always ready to speak up for it. So this week I was very sad to learn of the death of Stephen Hawking, one of the highest profile advocates and campaigners for the NHS.

Despite being diagnosed at 21 with motor neurone disease and told that he had only a short time to live, Stephen Hawking continued to work at the highest level in his field of science for a further 55 years. And he was very clear about who to thank for his long life: ‘I have received a large amount of high-quality treatment from the NHS without which I would not have survived.’ It took undoubted grit and determination too, but he consistently made light of his disability. In his later years he was an active campaigner for the NHS and used his public position to speak out against underfunding and privatisation.

Stephen Hawking’s campaigning led to several high-profile rows with Jeremy Hunt. A government minister who perhaps should be renamed in terms of the famous Radio 4 interview in which he was introduced to the listeners by James Naughtie as Jeremy Cunt. A spectacular, but hardly inappropriate, slip. The essence of the row was about the nature of the evidence that Hunt was claiming as his basis for a new health policy. If you are going to have a public argument about the nature of evidence, it was certainly inadvisable to choose to have this row with one of the best scientific minds in the UK. Suffice it to say that Hawking duly exposed major factual holes in government health policy. And in the last few months of his life he had become involved in a legal challenge to Hunt’s plans for further NHS privatisation.

Hawking’s view of the current shortcomings of the NHS was that they had arisen from persistent underfunding and creeping privatisation. In a healthcare system that is under massive and continual strain not all treatment can be delivered well at the same time. So urgent care is prioritised, which leads to unacceptable delays in non-urgent care. This has been underlined by a series of reports that have argued that long waiting times for some patients can only be improved by an injection of new funding.

Over the past seven years, I’ve had four major surgical procedures and have spent ten weeks in four different acute hospitals. As a cancer patient I was a priority. The treatment I received was of the highest quality and in the main it was very successful. I have been all-clear of cancer for sixteen months and I will be scanned every four months to make sure that I continue along this road. Whilst my story is not as spectacular as that of Stephen Hawking, my treatment has been life-saving and I have nothing but praise for the work of the NHS. For despite being under great pressure they do a fantastic job.



Sunday, 11 March 2018

After Apple Pruning

The banks of snow that trapped us at home for five days have largely gone. Proof positive, if any more was needed, that March is a month which faces two ways.  Last week it was blizzards, snowdrifts and minus 10 C, this week it is daffodils, lambs and plus 10 C. So I took the opportunity to embark on a gardening job that had needed to be put off for a long while, pruning the apple tree.

Each winter I’d prune the apple tree at the top of our driveway. This is when it needs to be done, as the tree is dormant. Because of the surgery on my ribs in September, I had put this job off to January. But then I didn’t embark on it because of the troublesome pain in my hip and groin. With a cold and snowy slice of winter having only just gone, today seemed the last good opportunity to prune the tree this year.

Over the past year the apple tree had grown many long shoots, some about three feet tall, which were mostly growing straight up. The task was to remove all of these with my loppers, cutting the shoots down to just above the buds, where the apples would grow from. The purpose of the pruning being to concentrate growth around the buds. I noticed that these buds were beginning to show purple. The white blossom could not be far off from appearing.

In previous years I’d cut large branches from the centre of the tree, trying to achieve the preferred shape – like a wine glass. This had encouraged the tree to grow laterally; it is now about six feet tall and twenty feet across. In recent years the tree has produced some good crops of apples. The other determining factor was the weather during the blossoming time. If it was mild then there would be plenty of insects, especially bumble-bees rising from their winter hibernation, to pollinate the tree. If the weather was cold then there would be few insects, little pollination and few apples in September.

My smaller loppers are about two feet long. I collected them from the shed and sharpened them with a file. As I did this I realised that I would be working my arms and back for real for the first time since the surgery on my ribs. I began to prune tentatively and found that I was able to use the loppers without pain in my left side. But my upper arms soon became tired. I paused for a short rest after twenty minutes. Then I got the small steps and began to lop the higher shoots. I steadily worked my way around the tree. At the end of an hour of lopping I stopped. I’d pruned most of the tree. My arms and back ached and I could do no more. I was certainly out of practice, but I was happy that I’d been able to undertake this tough gardening job without any problems from my ribs. I returned indoors, T made me a lovely Sunday brunch and I sat in the armchair afterwards feeling pleased with myself.



Sunday, 4 March 2018

Snow Joke

We have been snowed in for five days now. There is a general covering of six inches of snow which has drifted in places to waist height. The lane below the house is impassable due to snow drifts. We have not been out of the house since Tuesday, other than to walk the dog during lulls between the blizzards. The snow on local roads has been compacted by tractors, the only vehicle safe to use hereabouts, even making walking extremely slippery. The forecast is for the thaw to set in tomorrow, but given how much snow is lying it looks like we may not be able to get out of the house by car until Tuesday at the earliest.

At first our confinement seemed rather exciting. We looked out at the snow falling and checked how deep it was. We cancelled outside commitments, turned up the heating and focused on things we had been putting off. I edited my poetry and T wrote her journal. Our fridge was full as T had taken heed of the warnings about the Siberian storm and had stocked up well (our nearest shop is a mile and half away on ungritted roads). The oil tank was filled too, as it had run down two weeks earlier and had been replenished. We were in our very own snowy retreat away from the world.

On the first day an inch or so of snow fell. Then, during the night, another six inches fell. This was whipped up by an icy easterly gale and drifted heavily. After this some worries began to set in. First we feared for Rex, who sleeps in a kennel in the garden. But the next morning he was frolicking in the snow. The kennel is filled with straw and in a sheltered place. Rex has long, thick fur and is very hardy. We gave him extra food and warm milk. He was delighted. Second we worried about the power going off, our cosy retreat would become Arctic pretty quickly without electricity to run the oil-fired central heating. Perhaps the phone and internet might also become cut off and then we would truly be on retreat from the world. And fresh snow has arrived every day.

We read reports of the great snowstorm of 1947, when the snow was up to roof level in many places. Some Irish villages were cut off for the best part of a month and the government asked the RAF to come in and drop food parcels. We also noted the great disparity in media reporting. The English and Southern Irish media gave due weight to the seriousness of the red-warning snowstorm. Reporting teams were sent out to cover the blizzards, road blockages and the excellent work of the emergency services to keep hospitals and other essential services going. There were reports of doctors walking in to hospital for hours in order to do urgent cancer surgery and mountain rescue teams delivering essential drugs to people cut off in rural homes.

And what did the NI broadcast media report? How much people were enjoying a snow day off with video footage of kids tobogganing on an inch of snow at Stormont. The tone of their snow reportage was trivial and light-hearted throughout. Why we wondered? Perhaps because the Belfast-based editors didn’t look beyond their own noses and only responded to the light snowfall they had at their suburban homes?  Perhaps because the heavy snowfalls mainly affected South Down and Armagh and these places were rural and their predicament was remote and did not merit inclusion? Perhaps because the film crews couldn’t be arsed to go there because they would have to experience discomfort in order to get these stories and there were much easier ones to be had close at hand?  Whatever the reason, the local broadcast media coverage seemed rather lazy and inept. And as you can see from this semi-rant, like in the Scandinavian winter, perhaps paranoia is beginning to seep in.