Monday, 29 August 2016

The Surgeon

We were called in to see one of the surgeons in the specialist unit for liver and pancreatic surgery at the Mater Hospital in Belfast. He sat at a desk with a large monitor; beside him was a nurse in blue uniform. The surgeon turned the screen towards us and called up the MRI of my liver. As he scrolled through the scan, a small shadow appeared near the lower edge of the liver. ‘That’s it’, he said, pointing at the screen with his pen.

Next he asked to examine me. I took off my shirt and lay on the couch. He perused the long scar down the centre of my torso, which had come from my first cancer operation in 2011 and was again employed for the operation last December, and shook his head. ‘I’ll need to make a fresh incision,’ he said. Using his finger like a scalpel he drew a line across my belly that followed the edge of my ribs on the right side. He paused at the bottom of my ribs and prodded my right side with his finger. ‘That’s where the tumour is,’ he said. ‘But I’ve not felt any pain there,’ I said. ‘You wouldn’t,’ he replied, ‘it’s too small at present.’ I nodded and gave thanks to the radiologist who had noticed that small shadow and alerted my doctors to the problem. The tumour would have been so easy to miss.

Back at the desk the nurse produced a one page colour diagram of the liver and pancreas. The surgeon inked the tumour in the diagram; it was near the lower tip of the liver. ‘It’s a reasonably straightforward procedure,’ he said, ‘I’ll remove the tip of your liver.’ He took his pen and drew a line across the diagram above the black dot. ‘I’ll need to leave a drain in for a few days,’ he said, ‘sometimes bile accumulates and that can lead to infection.’ I nodded, noticing that the nurse was writing notes below the diagram. ‘The liver is very resilient,’ he said, ‘what I’m going to remove should grow back in three months.’ T gripped my hand. ‘Thank you,’ I said, ‘’you’re making it very clear.’ The nurse smiled at us.

‘I’ve got a slot in theatre available on Wednesday afternoon,’ he said, ‘do you want it?’ I gasped; I wasn’t expecting anything to happen so soon. He looked at me quizzically. ‘I’ll take it,’ I said, my heart racing. ‘The sooner the better,’ said T, squeezing my hand

‘You’ll need to be admitted tomorrow afternoon,’ said the nurse, ‘for your pre-op.’ ‘Okay,’ I said, with a sharp exhale. The nurse took the one page diagram and wrote down the ward and phone number, ‘they will ring you to make arrangements for your admission.’ Then she handed us the page with the liver diagram, it had a label with my name and a barcode at the top. As we left the consulting room she handed me a document titled ‘Patient Information for Consent’ which listed all the risks associated with the surgery I was going to have. The first page included the names of each of the surgeons, she pointed out her name, phone number and email at the bottom of the page.

‘I’ve now been in each of the hospitals of the Belfast Trust,’ I said, ‘and this is the best patient information I’ve seen.’ She smiled, thanked us and returned to the consulting room. T and I paused in the corridor. The green walls and fluorescent lights began to whirl around me. ‘You alright?’ said T, clasping my arm. ‘It’s all happening so fast,’ I said. ‘You’re bound to be feeling the shock,’ said T, holding me tighter. ‘Thank you,’ I said, steadying. ‘The good thing is that it will all be over quicker,’ she said, and hugged me.

Ward F
Level 3, McAuley Building
Mater Hospital

Admission 30th August for Surgery on 31st August.



Tuesday, 23 August 2016

The Oncologist

I was due to meet the Oncologist to discuss the results of my MRI scan. We waited uncomfortably. Then a letter came giving me an appointment, but it was cancelled the day before by telephone. A couple of days later another letter arrived. It called me in to the Chemotherapy Suite for an assessment.

Anxiety surged through me. I looked up tumours in the liver and found that the usual treatment was either surgery or ablation. Oh no, I thought, this means my tumour wasn’t treatable in the normal way. Then I looked up chemotherapy for Renal Cell Carcinoma and found that the drugs they currently had didn’t eradicate it, they only slowed down the tumour’s progress. I felt very depressed.

I tried to keep myself busy and went on long cycle rides, so that when night came I was very tired and slept. After all I didn’t feel unwell. If the routine scan hadn’t found a problem I wouldn’t have known anything about it. One of the rides I did was up to Spelga Dam via the highest road in NI at 1350 feet. It was a real struggle but I managed it. I was delighted; I hadn’t done that steep climb since before I had cancer. I suppose I was also trying to challenge myself to prove that I was really alright. 

I hadn’t been to the Chemotherapy Suite before. It was a large comfortable waiting room with easy chairs, magazines, free tea and coffee. You were given a bleeper and when this went off you had to head down one of three corridors to the treatment rooms where the heavy business took place. We sat and waited in this ante-chamber along with many others. A good number were pale and gaunt: some in wheelchairs, some with no hair. I was very afraid that I would soon be joining them.

Finally we were called. At the end of the corridor a room and a different Oncologist to the one I’d seen before. She said the lump in my liver was confirmed as a tumour. It was small, 1.8 cm in diameter. I nodded, my pulse was beating faster. She told me that my case had been discussed at a multi-disciplinary team meeting and the recommendation was that I should have surgery. I gulped. She said that I would shortly be called to the Mater Hospital to meet the surgeon.

‘And what about chemotherapy?’ I said, hesitantly.

‘We wouldn’t be recommending that’, she said.

‘But your letter said I should come here for an assessment,’ I said, showing her the letter.

‘We were really worried,’ said T.

‘It’s just words on a page,’ said the Oncologist dismissively. ‘Surgery is the first treatment option and you’ll soon be called in to the Mater.’

We walked out of the Chemotherapy Suite with a spring in our step. The letter was, of course, only words on a page. But which words were placed on the page did matter. I imagine the problem was caused by a mistake or laziness in the office. Surgery was a known evil. And despite its threat, it somehow felt more manageable.


Wednesday, 17 August 2016

First Aid

To help relieve my worries about the lump in my liver, I went for a relaxing cycle ride along the tow-path yesterday afternoon. The good weather had brought out many more people than usual on their bikes. Returning from Newry, I was surprised to meet a boy running towards me shouting for help. I stopped.  

‘He just collapsed and fell,’ he screamed. ‘It could be a heart attack.’

‘Where is he?’ I said.

He pointed up the road. ‘I’m ringing an ambulance,’ he gasped, ’please help.’

I nodded and cycled the short way to a younger boy who was pacing around a man lying in the road. ‘Daddy, daddy,’ he shouted.

The man was flat on his back, a patch of dark blood on the tarmac behind his head. Three bikes were scattered across the road.

‘I think he’s gone,’ said the younger boy.

I gulped and stared at the man beneath me. I was afraid, what could I do?

I glanced up; the young boy looked at me pleadingly.

I slowly bent down to feel his neck for a pulse. Suddenly, the man coughed but didn’t open his eyes, his face was purple

‘Daddy, oh daddy,’ howled the young boy.

Desperately trying to remember the first-aid course I’d taken forty years ago, I turned him into the recovery position and began to press his lungs with my palms to help him breathe. He coughed a couple more times but then stopped. I kept going with my rhythmic pressing.

‘Where are we?’ shouted the older boy, phone to his ear.

‘A mile south of Poyntzpass’ I said, having been up and down the route countless times.

He relayed this to the 999 operator, who then began to ask questions about the man. The older boy spoke them to me. I answered and he relayed my responses to the operator.

‘She says we need to put him on his back’ said the older boy. We rolled the man over and the younger boy took off his T shirt to support the man’s head. The older boy, phone wedged to his ear, put his hands together and with the heel of his palms began CPR – press one, two, three, four, pause.

After a short while I took over. Then a couple arrived on their bikes and began to help. They were Polish and trained in first-aid. Taking it in turns we kept the CPR going until the siren of the ambulance sounded down the road.

The two paramedics jumped out, each with a kit bag. One worked at his side and injected him with something; the other began to work on his airway, pressing a large balloon to work his lungs. The Polish man continued with CPR.

I stood up and looked at my watch. Twenty minutes must have passed. Standing a discreet distance away up the road was a group of cyclists and walkers.

As they worked, the paramedics had lots of questions about the man. The youngest son answered. It seems his father had been having pains in his chest for several weeks. They were cycling and he had complained of feeling faint, then he collapsed.

Attaching a lead to his chest and side the paramedics told us to stand away from him. One convulsive shock and a pulse started. I could see the jagged line on the monitor. They gave him another injection and told the Polish guy to continue with CPR.

The man had been dead for twenty five minutes, but now he was resuscitated. Soon he was in the ambulance and away.

I turned to the Polish man. We shook hands. ‘I hope he survives,’ he said. ‘I hope so too.’

‘I’m going to take another course in first-aid,’ I said, mindful of the terrible feeling of exposure I had being first upon the accident. ‘It’s something everyone needs to know’.

The Polish man nodded. We both picked up our bikes and set off. We were heading in different directions.

I had about nine miles to ride to the car. I cycled slowly. For me this was another powerful lesson about how fragile life is; the latest in a line that stretched back decades. Yet I would still habitually rush around with hardly a thought for how easily my life and the lives of those around me could be snuffed out.

Driving home, cars sped past me, overtaking on the other side of the road. ‘Hold on there,’ I shouted, ‘slow down’. Here I was with a potential tumour growing inside me, and I didn’t want to die in a car accident.




Tuesday, 9 August 2016

Sixteen Tons

The routine CT scan showed a small lump in my liver. ‘It could be a capsular deposit or a metastasis’, said the oncologist. I looked quizzically at her. ‘A tumour’, she said, helpfully. I nodded. She smiled, ‘so I’m sending you for an urgent MRI scan’.

At the Cancer Centre, I filled in the MRI questionnaire. They wanted to know whether I had any metal in my body. I could safely say no to the questions about body piercings and shrapnel wounds, but I had to acknowledge the sternal wires and surgical clips from previous operations.

I took off my clothes, then my necklace and bracelet and put on the hospital gown. I sat in the cubicle and waited, naked apart from my underwear.  A knock on the door and I was called.

The MRI scanner is a long slim tunnel surrounded by a huge magnet. I lay on the narrow bed in front of the machine. A curved panel was strapped around my midriff. Then headphones were put on me. Because MRI scanners are very noisy, the radiologist speaks to you through the phones. But most of the time music is playing very loudly.

Move closer...

I began to slide into the scanner feet first.

Move your body real close...

I was right inside the scanner; its grey walls just a few inches away.

Feels like we’re really making love...

I was entombed. The scan started and loud pulses roared around me. My midriff began to get warm. But, despite Phyllis Nelson, I wasn’t feeling a great deal of love.

‘Hold your breath’, said the radiologist. And the pulses began again. They sounded like a deep thumping siren.

People say a man is made out of mud.
A poor man’s made out of muscle and blood...

Again I was told to hold my breath. The pulsing reverberated around me.
 
You load sixteen tons and what do you get?
Another day older and deeper in debt...

I was trapped, like at the bottom of a coalmine. I panted, allowed to breathe again. Tennessee Ernie Ford boomed on.

St Peter don’t you call me because I can’t go
I owe my soul to the company store.

My mind raced ahead; what would the scan show? A third bout of cancer?

When the night has come
And the land is dark
And the moon is the only light we'll see

‘Nearly finished’, said the radiologist, cheerfully. ‘You alright?’

No I won't be afraid
Oh I won't be afraid
Just as long as you stand, stand by me






Wednesday, 13 July 2016

Good Weather for the Garden

The past month has been pretty wet hereabouts. Barely a day seems to have passed without rain; payback perhaps for the long dry spell we had earlier. The ground has been saturated and combined with a little warmth most plants have flourished. My garden seems replete with moist, green fecundity. Five weeks ago my mower broke down and the lawn has retaliated by becoming a meadow.

We live on the side of a drumlin and have about half an acre of grass around us dotted with trees and shrubs. When I moved here the house hadn’t been lived in for months and the grass was over three feet high. A farmer friend of my neighbour's was enlisted to cut the grass with his tractor and disc mower. Afterwards I had to manually rake the grass and pile it into stooks which were then picked up and carried away by the tractor. This was an insight into the agricultural labour that my forefathers had done for generations. The haymaking was very hard work over several days which left me with an aching body that took days to recover.

I was advised to get a ride-on mower to keep the grass in check. I bought a second-hand Honda but it couldn’t manage the steep slopes of the garden. So they took it back and sold me the toughest mower they had, a Snapper, made in Georgia USA to a 30 year old agricultural design. It was red and chugged up and down the steep slopes munching the grass as it went. Over the years my Snapper has proved to be very robust until it stopped suddenly five weeks ago.

I took the mower to the repairers, they already had a backlog to fix and said they would try and do it in two weeks. At the end of this time I rang to find it still wasn’t fixed. They had first ordered the wrong part and then, because it was an old mower, the part they needed wasn’t in stock. Two more weeks passed and the grass grew and grew. It was about a foot high and meadow flowers had begun to proliferate in it: yellow vetch, ox eye daisy, white and purple clover. Without trying I’d got a very large bee garden.

I rang the repairers again, they had fixed one problem and the mower was operational, but they were still waiting for several parts to finish the job. We agreed that I would take it back to cut the grass and then return it to them when the parts they needed had arrived. My obliging neighbour took me to pick it up with his trailer which had a ramp at the back. The trailer was littered with sheep shit from its previous occupants, but no matter the mower slid in nicely.

I pondered how the mower would manage to pick up the grass when it was over a foot long. It won’t, said another neighbour, what you need to do is to mow the grass and blow it back out onto the lawn. Let it dry for a few days and then you’ll be able to go around again and pick it up with the mower. Seemed like a good plan.

I waited for a dryish day and late in the afternoon I set about the cutting. Even the trusty Snapper laboured through the long grass. The engine grumbled but the grass was sprayed about fifteen feet into the air, landing in heavy green clumps on the lawn, the mower and me. Then the mower ground to a halt. The grass was only dry at the top and kept clogging up the blades. I had to keep stopping to pull handfuls of matted wet grass from its innards. Slowly the Snapper did its job. I didn’t feel good chopping through the wild flowers, so I left a strip along the edge of the garden for the bee meadow.

It rained solid for two days and then it was dryish for the next two. On the first day I raked the clumps of grass to help them dry. On the second I got out the mower to pick up the old grass. Trouble was the lawn had also grown a couple of inches so it was a mix of dry and fresh grass which took double the normal time to cut and pick up. T helped me dump the grass into the field at the back hedge. And to add insult to injury there was a torrential downpour for the last ten minutes of our work. But we just kept going and flopped indoors: drenched, covered in grass cuttings and knackered. Even with labour-saving machinery, a country life isn’t easy.




Sunday, 3 July 2016

History Repeating Itself

We seem to have been reliving our past. There are so many points of connection between the national politics of the past six years and the 1980’s. To begin with: austerity. Or as this was known in the 1980’s ‘the cuts’. Then, Margaret Thatcher led a government which made deep cuts in public spending year on year. As have Cameron and Osborne. And what is more, the electorate kept voting for these cuts, then as now. Indeed, it was Mrs Thatcher who coined the phrase ‘there is no alternative’.

With rapid falls in public and private investment, poverty, inequality and unemployment all massively increased during the 1980’s. Since then high levels of unemployment have become normal. In recent times this pattern has repeated and levels of poverty and inequality have spiked again, as the national need for food banks has shown.

In the 1980’s there was widespread opposition to austerity and this was focussed around metropolitan local authorities, such as in London and Manchester (where I was a PhD student). But perhaps the greatest emblem of this opposition was the Miners’ Strike, which the Thatcher government managed to successfully undermine through union constraining legislation and politicised policing.

Recent public opposition to austerity in Britain seems to be relatively cowed. Perhaps it has become refocused around single issues, like benefits for the disabled or funding for the NHS or environmental protest. In contrast to the 1980’s, the highest profile union struggle in recent times has been between the government and the BMA, an elite professional union.  

Throughout the 1980’s the Labour Party was riven by struggle between right and left. At first Michael Foot and Tony Benn were in the ascendancy and led the political opposition to Thatcherism. This undoubtedly implacable opposition did not lead to success in any general election and the party’s manifesto for 1983 was called ‘the longest suicide note in history’. So is Jeremy Corbyn a new Michael Foot? And is Momentum the new Militant, yet to be proscribed by a new reforming leader? Might there be a putative Neil Kinnock about to emerge on the scene or is Jeremy going to change his spots?

During the same period the Tories were split over Europe. Under Thatcher the Euro-pragmatists were in the ascendancy and she used this, and the rise in poverty, to negotiate a large rebate on the UK’s annual payment to the EU (which still remains). During the 1980’s the migration problem was in the other direction, conditions in the UK were so harsh that more people chose to leave than stay. And this unremitting harshness eventually told on public opinion.

In the run-up to the 1992 election Thatcher was deposed by Tory MP’s scared of losing their seats. The reformed Labour Party under Neil Kinnock was in the lead in opinion polls, but the tabloid press came to the Tories aid. The front-page headline in the Sun on election day was ‘If Kinnock wins today will the last person to leave Britain please turn out the lights’, with a caricature of his face on a light-bulb. And the Tories under John Major scraped back in.

The tabloid press played a similar role in last week’s referendum. The Daily Express front page had a Union Jack backdrop with the headline ‘Your Country Needs You: Vote Leave Today’. And when this war was won, the Express (like the Sun in 1992) crowed that they had played the decisive role in this xenophobic victory.

So now there is to be a new Tory leader and PM. Apart from Cameron, the Tories have a recent tendency to choose those who have been cut from the common cloth and made good: it reinforces notions of social mobility and disguises their patrician power base. Thatcher and Major both fitted this bill, as do all of the current candidates. The Bullingdon boys have decided to hold fire until the dimensions of the mess that we all have been left in become clearer.

And what happens next? Well, who knows? Leaving the EU is definitely dangerous, uncharted, territory. And I still hope that this can be avoided somehow. Whatever path we take we will surely need to work through the confused mix of nostalgia, prejudice and protest that has brought us to the current predicament. I think it was Santayana who said that ‘those who fail to learn from their history are doomed to repeat it, first as tragedy and then as farce’.

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.