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.

Saturday, 19 March 2016

Sheep and Stress

Out for a walk near my house, I came across a sheep in the hedge at the side of a small field. Nothing too unusual I thought, sheep always try to get out of the field they are in. I carried on down the lane, it was a fine sunny day and this was one my first walks out in the fresh air after weeks of bronchitis.

I had suffered from a terrible cough for three weeks and then this had been replaced by a sore and wheezy chest. It felt like very bad asthma, my breathing tubes were still inflamed by the virus. Although the sun shone, the wind was keen and I pulled my hood up to keep my face warm. It was lovely to see the new grass in the fields, the ewes and their lambs grazing, catkins hanging from the hazel trees, wild snowdrops and daffodils in the hedgerows and queen bumblebees active after their hibernation ready to establish nests. With tomorrow being the Vernal Equinox, it certainly felt like the height of Spring.

Since the discovery of my lump, some five months ago, I have been suffering from very high stress. Getting the all clear two weeks ago in my first general CT scan post-surgery was a huge milestone, especially as the oncologist had told me that she expected it to show a recurrence. But long-term stress doesn’t just switch off like a light-bulb. I felt enormous relief, then complete exhaustion. And my stress symptoms persisted. I felt sluggish, restless, anxious and often had difficulty sleeping. Stress hormones were still coursing around my body. Then I would sleep for ten hours and wake feeling completely burnt out and depressed. I had what is called a stress hangover. And I hadn’t touched a drop.

The treatment for this condition is gentle exercise, good food, talking through your troubles and gentle distractions that take you into a different mental and emotional space. My ability to follow the first of these was somewhat undermined by the bronchitis, but I could pursue the others. T has continued to be a great help and support. Despite her own persistent cough, she made me healthy soup and we laughed at Shaun the Sheep videos together. And slowly the problem has eased.

On my return up the lane I saw that the sheep was still in the same place in the hedge. That is strange I thought, and I entered the field to investigate. As I approached I saw that the sheep was stuck, held tightly by several briars that were strung across its back and latched into its wool. The sheep was panting and began to buck against the briars. As I got closer it began to buck harder, loosening one of the briars. I picked up a sturdy stick and prised the briar from her wool. She bucked again, the other briar snapped and she was free. The ewe ran off across the field bleating, the broken briar dragging behind and a little black lamb trotting at her side. 

Monday, 7 March 2016

Well done my little white cells

An epidemic of swine flu has been spreading across Europe this winter. It seems to have been particularly pronounced in Ukraine, where 3000 people a week were being hospitalised and over 300 people have died. Unfortunately in recent weeks it has spread to this island and over 20 people have died here thus far. Swine flu is a particularly virulent strain of flu (H1N1) which is strong enough to kill the young and healthy. This flu last hit us in the epidemic of 2009 when over 250,000 people died from it worldwide. It doesn’t come from pigs, but is similar in its structure to a virus that affects pigs. You don’t get it from eating bacon and sausages.

I know only too well what it feels like as I’ve had this flu for the past two weeks. It began in the normal way, with a headache and sore throat. Then it quickly escalated to a sinus infection and a chest infection. My chest became very sore and I had frequent coughing fits that couldn’t be soothed. I took Paracetamol, Sudafed and Benylin. My chest got so bad I was heading towards a bottle a day habit. I was feverish, my joints were aching, I felt exhausted and listless. I couldn’t concentrate, my eyes and forehead throbbed. Added to that was the diarrhoea. Without doubt it has been one of the worst doses I’ve ever had.

After the 2009 epidemic the UK stockpiled a drug called Tamiflu.  This drug inhibits the spread of the virus through the body. But it must be taken within the first two days of the virus appearing and has some significant side effects. In practice most people are very unlikely to recognise that they have something out of the ordinary within this time period. The £500 million cost of this stockpile has undoubtedly benefited Roche, the drug manufacturer, but probably not the rest of us too much. The seasonal flu vaccine does offer some protection from this strain, apparently you still get infected but you don’t get quite so ill with it.

Once the flu virus has spread through your body there is little you can do other than keep warm, keep hydrated and take things like Paracetamol, Sudafed and Benylin, to manage the symptoms. Over the past week I’ve also taken a course of antibiotics but they haven’t had any discernable effect. This confirms that the problem is viral and the bug will have to run its course. Thankfully, during the past day or so my immune system appears to have been gaining the upper hand, as I have had periods when my symptoms have subsided and it feels like I am getting better. But I also know that I must be careful as deep down some vestiges of the swine are still there.

The greatest boost to my recovery came today when I heard that the CT scan I had last Thursday was all clear of cancer. I’m over the moon and deeply relieved. I was dreading the result of this scan. Because last month the Oncologist told me that she thought that this scan was ‘likely’ to show a recurrence, as the pathology report had shown that some cancer cells had been left behind by the surgeon. She even gave me a leaflet about the chemotherapy drug that she was expecting to put me on.

I can only conclude that my immune system is doing extremely well. It has killed off all the cancer cells that were left behind when my tumour was removed. It has repaired all the cells that were damaged during my abdominal surgery. And now it is sorting out the swine flu bug that has already killed hundreds of healthy people across Europe. Well done my little white cells.