Tuesday, 21 June 2016

Corrymeela

This internationally respected peace and reconciliation centre was founded by Ray Davey an army chaplain who, like Kurt Vonnegut, had been a POW and had witnessed the fire-bombing of Dresden in 1945. Both men were profoundly changed by this terrible experience in which the city was destroyed and at least 25,000 people were killed.

Working as a chaplain at QUB, Ray became committed to fostering community as an antidote to violence. He wanted to found a place where people of good will could come together and learn to live in community. In early 1965 he managed to raise £7000 in ten days to buy a site on top of the cliffs near Ballycastle and, with the help of students, Corrymeela was opened in October that year. Since then the centre has been run by a small number of permanent staff and a large community of volunteers, many of whom come from all over the world to support its work.

I stayed there, with T, on a residential organised by Cancer Focus for people living with cancer: patients and their partners or carers. There were about forty people in total, with a wide range of diagnoses: from terminal and untreatable, to people with recent recurrences like myself and many others with initial occurrences of the disease. Three quarters of the people on the residential were female.

The purpose of the residential was well-being. There were many different activities on offer, from Art Therapy and Pilates to Juice-Making and Photography. In the evenings we had a storytelling session, a drumming circle and a sing-along. It was great to get away from our normal surroundings and share in doing something new, with people in the same boat as yourselves. There were also group discussion and reflection sessions which focused on living in the present.

I had never met any of the other participants before. Cancer was the one thing we all had in common. And for me, the informal chats and sharing of experience between people was the best part of the residential. I walked down the beach towards Ballycastle with a woman who had had a recurrence of bowel cancer last year. We discussed how a recurrence is much more threatening than having cancer the first time around. She said that the first time around you oscillate from believing your life is over to a sort of vain hope in which you tell yourself that it can't and won't happen to you. With a recurrence you lose the ability to deny the seriousness of your situation and your ray of hope becomes much more fragile. This made complete sense to me and drew into sharp focus much of what I had been feeling over the past seven months.

The most powerful observation for me came from a man who had a terminal form of a rare blood cancer. He said that the cancer was going to do what it would do and there was nothing that he could do about it. What he had decided to do was to get on with living his life for as long as he could. As he finished speaking it hit me that I had spent a huge amount of my energy and resources trying to control the uncontrollable. A couple of months ago, after I had been categorised as high risk, I challenged my Oncologist with a detailed set of questions about my cancer and the predictability of a further recurrence. She was unable to answer any of my questions. This left me deeply dissatisfied and full of fear.

I realised that, if even the experts didn't know, how could I hope to understand the likely course of the disease. The problem itself was unpredictable, unknowable and unanswerable. Instead of despairing, which is where I had often ended up, there was a way forward. I could do my best to put it all to one side and get on with what I was able to do something about, trying to live my own life as well as I could. I returned from Corrymeela with a lighter step and with a glimpse of a path ahead that I hadn't been able to see before.

The spirit of this place of gathering and the sharing of the participants on this residential had indeed given me something precious.  


Monday, 6 June 2016

Mindfulness

I’m learning about mindfulness. I’ve taken a workshop with Padraig O’Morain and I’ve begun an online course. Mindfulness means being aware of what you are doing while you are doing it. This is not as simple as it seems. Often I find I am doing things on some sort of auto-pilot whilst my head is somewhere else, usually worrying about something or other. Then I come out of where my mind had taken me and emerge into the present moment, startled and blinking.

This is completely normal. Our minds constantly impel us to think about the past or the future, rather than being in the here and now, paying attention to what is actually going on with us and around us. Mindfulness is all about learning how to be in and remain in the present moment. Although mindfulness is a practice that is derived from Buddhism, it is not the same as this ancient religion.

During the workshop I sat with my eyes closed with around fifty other people and focused on my breathing for a few minutes. This sounds easy but it was very hard to stay focused on my breathing, my mind kept drifting away to other things. When this happens, Padraig advised, you notice the thought you are having and gently bring yourself back to your breathing. Don’t scold yourself for having odd thoughts or ruminating, he said, this is entirely normal. Just accept that fact and bring your attention back to your breathing.

Later we did some more exercises, including a body scan: a process of paying attention to each part of your body, starting at your toes and finishing with your head. Inbetween the exercises we learnt about the health benefits of mindfulness. These have been particularly marked for people suffering stress, both mental and physical. And mindfulness is now accepted as a therapy by the medical establishment for people suffering from chronic pain, depression and anxiety. As I have suffered from each of these at times over the past decade, I felt that mindfulness was something that I should try. 

The logic of mindfulness is that by noticing the often stressed thoughts that you have about the past and future, as well as the physical effects they produce (raised pulse, impact of stress hormones etc), you are able to recognise that these thoughts and their effects are in fact detached from your actual here and now. Through doing this regularly you become more skilled at remaining in your actual present, you ruminate less and you become calmer. As you spend less time and energy in reaction to a remembered painful past or an imagined painful future, you have more ability to make better choices about what is actually happening to you.

A while ago I got a postcard, out of the blue, from a good friend. The card had just two words emblazoned on it: enjoy now. As a longstanding cancer patient (I am just coming up to my five years anniversary) who has had a recurrence and is at high risk of another, there are plenty of painful past events to recall and some painful futures that are all too easy to imagine. One day at a time has been my mantra since my recurrence last year. But a day is a long time and a night is often longer. Perhaps that should really be one moment at a time. For all we ever have is the present moment. The past has gone and the future is unknown. So let's do our best to mindfully enjoy the here and now.



Monday, 23 May 2016

Horses and Wolves

We all experience setbacks and challenges. These are invariably painful. The most encouraging response is to surmount your fear and try again: as the saying goes ‘when you fall off a horse, you have to get back on’.

I’ve actually fallen off a horse only once. I was ten and I vividly recall lying dazed and winded at the edge of the lane as the fat pony I had been trying to ride trotted off home for its tea. The pony was owned by a lad in the village and I had been pestering him for months for a ride. It took me a good while before I got the courage to try horse riding again. On our recent trip to Cork and Waterford I had to get back on a (metaphorical) horse after twice falling. 

In April 2011 I was admitted as an emergency patient to the City Hospital and then told that I had a large tumour which would require very major surgery. I lay in my hospital bed, dazed and in fear, and was given a series of procedures and invasive tests in preparation for the ‘big op’. I had to cancel everything I had planned for the months ahead. One of these was a reading tour of Ireland and Britain I had arranged to promote my first book of poetry, launched just four months earlier.

My recovery from the ‘big op’ was prolonged and challenging, and intensified by my then partner leaving me after three months. One of my coping strategies was to try and restore some of what I had been forced to cancel. I managed to rearrange only a couple of my poetry readings, the first of which was at O Bheal in Cork in April 2012. Unfortunately I wasn’t in good form, I was still taking daily painkillers, and the reading didn’t go too well. Afterwards I tried a farmhouse B & B in West Waterford, but despite the good hospitality at Kilcannon House I spent an unhappy and sleepless night there.

In November 2015 I was diagnosed with a recurrence of the same cancer which would require further surgery at the City Hospital. I had to again cancel everything I had planned for the months ahead. But the big difference in my recovery this time was that I now had a deeply supportive partner who helped me every step of the way. Thank you so much dearest T, I don’t know how I would have coped without you.   

Our recent trip South was first for a poetry reading at O Bheal and second for a short break at Kilcannon House: encountering the two horses that had dislodged me previously. At O Bheal this time I felt good and read a series of new poems, which seemed to be received very well. At Kilcannon House we were given the same marvellous hospitality and slept in the same room as I had done before. This time the stay was lovely. After an extremely tasty five course breakfast, I hired a bike and went cycling through country lanes between Dungarvan and the River Blackwater. T had an extended cookery lesson with Gertie our hostess, she was trained as a chef by Jane Grigson and used to run a local restaurant. That evening’s three course meal was prepared entirely by Gertie and T, it was delicious.

On the way back, at our host’s recommendation, we stopped at Curraghmore House near Waterford. This huge estate with beautiful gardens and woodlands has some of the grandest trees in Ireland. In the gardens were four impressive and dramatic sculptures by Pierre Rouillard, who was celebrated for his animal pieces in 19th Century France. A snarling wolf was paired with an angry hound, at either side of a leafy avenue. We strolled, picnicked beside the lake and then drove home. All in all it was a fine trip, with T’s support I had overcome my fears and got back on the horse – twice.


Friday, 13 May 2016

The Bonfire

It’s been a busy week, a transitional week and the first week of Summer. The festival of Beltane was a week ago (on 5 May), the halfway point between the Spring and Summer Equinoxes that marks the beginning of Summer. On this day I saw my first swallow of the year, soaring and diving for insects after its 6000 mile return flight from Africa. And on this day the warm weather arrived, building in heat day upon day to reach the dizzy heights of 25 degrees Celsius (according to the thermometer in the shade in my porch on Monday).

Sustaining us through the bleak, damp and relatively colourless Winter is the promise of return. That warmth will return, that migratory birds will return, that deciduous trees will again come into leaf, that blossom will again flourish and bumblebees will pollinate it to bring forth fruit.  These natural cycles persist despite how we feel. We may be fearful and down but the blackthorn will still be the first tree hereabouts to spring into delicate white blossom. And fear and depression are in themselves phases that also pass, despite how pervasive and unchanging they seem when in their midst.

After making the bee garden I embarked on a sustained bout of catch-up gardening. Since last Summer there had been plenty of work not done due to the return of my cancer. First I pruned the natural hedge at the side of the house and stripped out all the briars that were choking its growth. Then I cut the back hedge, a row of Castlewellan Gold’s that have grown together and need to be pruned regularly to keep them to a manageable height: they are about six feet high and almost as wide as they are tall. After all this the lawn became piled with cuttings and briars.

T and I dragged the piles to the back of the garden shed, but found the dump there already full with branches and sticks collected from the lawn after a succession of storms and two seasons of prunings from my apple tree. We needed to have a bonfire. We then hauled all the debris across the stile into the corner of the next field. A couple of scrunched up newspapers, some dry sticks and the bonfire was soon alight. T was delighted to be in charge of feeding the flames. I had to withdraw due to my asthma which is irritated by smoke. From the safety of the lawn I watched the flames and smoke rise into the bright sky. In a couple of hours we had burnt all the debris accumulated from the garden over the past year or so.

Beltane is traditionally celebrated by a bonfire. The flames, smoke and ashes were thought to have protective powers. People and their animals would circle the fire or jump over it. All the fires in the house would be doused and then relit from the Beltane fire. Although a few days late, we circled the bonfire and made wishes. 


Wednesday, 4 May 2016

The Bee Garden

I’ve planted wildflower seeds in a corner of the garden near the pond. First I strimmed and raked the rough ground. Then I laid a layer of topsoil: four barrowfuls dug out, ferried down and shovelled across the ground, strenuous work. After that I sowed the seeds and laid another layer of topsoil. Finally I watered the new garden with the hose. As I admired my handiwork, I imagined the many flowers that would be out in two months time and the bumblebees that would be buzzing between them. Then a thought floored me, would I still be here to see it next year?

Living under the ongoing threat of cancer is not easy. You try your best to live a normal life, but being in this situation is far from normal. I try to cope by staying in the here and now. Yet, living day by day is not at all normal. It’s normal to make plans for the weeks and months ahead. It’s normal to respond to invitations to join others in their plans. That is everyday social life. It’s all about participating in and making plans. Living in the here and now is somewhat oppressive and disabling. It sets you apart from most others.

Although I have been told that I am at high risk of recurrence, as far as I know I am currently free of cancer. Whilst difficult, that is a good category to be in. I have a scan in about a month, at which time two other categories become open: the cancer has returned and is treatable or it has returned and it is untreatable. Both of these are obviously bad places to be. And it is important not to waste the time you have now imagining that you are already in either of them. I know of someone who is in my situation who has not been able to cope with the constant threat. She has become convinced that the cancer has returned when the scans tell otherwise and is under the care of the mental health team.

I have begun to go and see a counsellor who works for Cancer Focus. She is very helpful. Indeed, she was the first person I spoke to about my problem when I got cancer the first time round. At our first session this week I told her about my medical situation and how difficult I was finding it to live with this threat. I also told her about the bee garden. After that we spoke about the challenges of living in the here and now. A recurrent theme was that many things in my present life were maybes. This was a very helpful insight.

I began to see that this provisionality was true for almost everything I was able to know at present. The experts couldn’t tell me whether the cancer would come back in months or in years. They were confident that it would come back but they couldn’t be sure. This helped to open the space for other maybes. Maybe I would be here to see the bee garden next year. Maybe, like my father, I would live for twenty five years after my cancer treatment. Maybe, maybe... 


Tuesday, 19 April 2016

Expert Opinion

This week I have attended consultations with an oncologist who specialises in kidney cancer and a surgeon who specialises in gastro-intestinal procedures. Over an intensive few days I have learnt a good deal about my situation. It has been very difficult news to absorb and go forward with.

The oncologist told me that I was at high risk of a further recurrence and that the most likely place for this was at the site where the tumour had been removed in December, because a small amount of cells had been left behind there. I asked what sort of time-scale might this be expected to happen in. She told me that the cancer I had was very unpredictable, it could be soon or it could be measured in years. I asked her if there were any drugs that could impede or stop the recurrence. She said that despite much research no drug had yet been found that worked to prevent Renal Cell Carcinoma recurring. In all the double-blind studies thus far people who were taking the placebo (a sugar pill) had better outcomes than those who were on the drugs that were being tested. At the end of the consultation she told me that I would be given CT scans at three monthly intervals to check whether any recurrence was present and wished me well.

The surgeon told me that the tumour that was removed in December had been attached to the rear wall of my abdomen and had abutted onto my duodenum (the funnel shaped tube that loops to join your stomach to your intestines). The surgeon had removed surface tissue and scraped both of these structures as much as he felt it was safe to do so. He told me that if there was a recurrence at this site, complex and demanding surgery would be required. This would probably mean the removal of my duodenum, part of the pancreas and bile duct and then the re-routing of my digestive system. This procedure was pioneered by a surgeon called Whipple in 1935, but until relatively recently was done rarely because of the high death rates of patients during surgery. He told me that these days this procedure was only done in specialist centres and because of this death rates during surgery had now come down to under 5%. The only good thing I learned was that there was a specialist centre for this surgery at the Mater Hospital in Belfast.

Now I know in some detail what might happen to me on my journey ahead. It is undeniably heavy knowledge and it is proving very hard to absorb. But I’ve always thought that it is better to ask questions and find out what is involved in any situation because your mind can build greater fear around the unknown. Despite what I have learned this week I still believe this. Knowing is a form of empowerment, however daunting your challenge appears, because you gain resources that you didn’t have before.

My last scan was six weeks ago and I am now around halfway to my next one. And at this last scan there was no sign of any recurrence. I can only hope and pray that I get the same result at the next one. Keep the faith.


Sunday, 3 April 2016

When in Rome

We are just back from a trip to Rome. We were based in Fiuggi, a medieval town 50 miles southwest of the city that became a spa after Pope Boniface was cured of kidney stones by water from a nearby spring in the 14th century. We drank the waters and walked the steep alleyways and flights of steps up to the old town on a hilltop some 500 feet above our hotel. The alleys were decorated with pot plants, washing hung from balconies and people sat on their doorsteps or leant out of windows talking. One of the alleyways was called Baciodonne, as it was only really wide enough for one person and you would be close enough to kiss someone coming the other way.

Fiuggi Alta was mainly populated by the old. In the cobbled square in front of the Commune you might see a couple of wizened fellas chatting, or a woman going home from the market with shopping but the young seemed to be absent. During siesta time you would see no-one, perhaps only a stray dog. The hilltop art deco Grand Hotel was closed and its ornate pink facade was crumbling.  The lower town was full of hotels where people came to get away from Rome and take the waters.

It was a one and a half hours by bus into Rome on traffic laden roads. Easter was warm and very crowded. On many street corners there were armed police. At all major churches there were army detachments. Scanners and metal detectors had also been erected; it was just like airport security, only the queues were longer.  

Rome is a visually spectacular city. The ancient Romans established the massive scale of the buildings and subsequent generations have sought to outdo them. Walking from the Colosseum through the Forum you come to the enormous and ugly white marble palace that honours Vittorio Emmanuel the first king of unified Italy. St Peter’s Basilica atop the huge steps above the vast square that runs down to the Tiber affects a similar grandiosity.

My favourite building is the Pantheon, a domed Roman temple that was later adopted as a church virtually unchanged. There is a large hole in the centre of the dome that shafts of light come through to illuminate the statues of gods (now saints) that were placed in niches around the base of the dome. Rain also comes through the hole in the dome but there is neat ancient drainage, water accumulates and drains through slots that are disguised in the pattern of the floor.

My favourite visit was to the Capuchin crypt where the bones of 4000 deceased friars were arranged in designs that covered the walls and ceilings of a series of rooms. The recurring motifs for the arrangements of bones were flowers and stars. You went from a room full of skulls, to one full of pelvises and then to another full of leg bones. It is a striking and sobering experience; the message is that life is short and death is ever present – something I am only too well aware of.  

My last visit to Rome had been over 30 years ago. It now seemed so much more crowded, with huge groups of tourists being led by flag waving guides around all the attractions. As Rome is built in a river basin and surrounded by hills, the air quality is terrible; my asthma really troubled me. At the end of each busy day in the city I found myself longing for the relative peace and calm of Fiuggi.