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.

Wednesday, 24 February 2016

The Wilderness

John the Baptist managed forty days and forty nights. We would have liked longer, but our bargain break only promised three. We were, however, located in the magnificent Nephin Wilderness: 27,000 acres of mountain, forestry and bog in North Mayo entirely preserved for nature. The principle behind this unique designation was that nature rather than humans would mould the development of this landscape over the coming decades. Visitors were welcome to experience the Nephin Wilderness as long as they used the land sensitively and left no trace.

Mindful of these principles, we picked a good hotel on the coast near Achill Island and went for walks into the wilderness each day. The weather was changeable: bright sunshine and blue skies interspersed with showers of rain and sleet. This produced some fantastic vistas of changing light as we walked along old drover’s trails and turf-cutters paths across the bog. The mountains had a sprinkling of snow on the tops and hardy black-faced sheep peered at us as we passed. We were able to take an informed interest in their heads, eyes and legs, having recent viewed the excellent hill-farming documentary ‘Addicted to Sheep’.

We ate well at the hotel breakfast buffet and pocketed snacks to munch during the day. We had home-made bread and wild honey; as no locusts were available, we took sausages. The first day we walked some eight miles and the second we went seven. I found that my post-operative body could manage these distances okay. The only trouble for me was a sore knee, a flare up from an old injury. T managed the walks without any problems.

Our hotel was blessed with an award-winning restaurant run by a very inventive chef who only used locally sourced ingredients. The restaurant also made all their own bread and each day there would be three or four different types to try. Our wild walks meant that we tucked into the very fine food on offer most heartily. The first evening we became so stuffed that we had to go for a walk down to the village and back to be able to sleep.

Unfortunately, there has been a sting in the tail. At the end of the week the hotel became full of families on half-term break, with kids running everywhere. The very next day we went down with a dose. Our return journey became an ordeal of coughing and sneezing. And since then we have been suffering in bed. It’s proving to be a bad dose of the flu.

Monday, 15 February 2016


I was delighted to get the call that told me my bone scan was all clear of cancer. Thankfully the torture of waiting for the result was over quickly. At first I was deeply relieved. Then I felt euphoric. Not long after I began to feel tired. The next day I felt run down. And this exhaustion persisted.

I had received the appointment letter several weeks ahead of the bone scan. I tried to keep doing things one day at a time and not to focus on this impending event. But my stress built up inexorably. This was intensified by the knowledge that there could be no way back from a positive result in the scan.

Over the past twenty years, I’ve regularly had aches in my lower back due to a worn disc I acquired during my younger days of running up and down mountains carrying a rucksack. In my youth I thought this was all good clean fun, and if someone had told me then that I would suffer in later life because of it I would have laughed. However, during the past couple of weeks when my back and pelvis were sore my mind began to tell me that this pain was something more than just the worn disc. These thoughts often seemed to happen when I was lying in bed at night. It was all too easy to believe that the pain was the cancer eating away at my bones.

All my fears seemed to be confirmed when I was asked by the nurse when I attended for the bone scan - had I noticed any pain in my joints and bones in recent weeks? I reluctantly answered yes. She noted my response and moved on to the next question. I gulped and my heart sank.

Since the scan result I’ve been treating the tiredness by cutting down on what I do each day. I’ve been meeting friends for coffee and going for walks in the fresh air and reading and doing a little writing; but not much else. I’ve also booked a wee break with T in the West of Ireland next week.

The war against cancer is an ultra-marathon. And to be able to win this war you have to remain strong and healthy throughout. The bone scan was an important victory, but the fight continues. In a couple of weeks time I will have a general CT scan which will check if there are any traces of cancer elsewhere in my body. I feel reasonably well at present, but you never know.

I’ve also been reading about what you can do to boost your immune system. It seems that despite much research there is no definitive evidence that there is any one thing that is of proven benefit (i.e. Vitamin C, Echinacea, Garlic, etc). The conclusions lead in entirely the opposite direction. To stop doing things that harm our immune system is the most important. So: not smoking, not drinking alcohol, not being overweight, not failing to take regular exercise, not missing a night’s sleep, not eating a balanced diet, not being stressed, and so on.

Given the intensity of our contemporary lifestyles these modifications are very hard to do. Wouldn’t it be so much easier to keep the unhealthy lifestyle and to take some magic bullet that would fix these problems? I wish it could be so, but unfortunately that doesn’t work. It looks like I’m going to be doing Lent for the long-term.