Saturday, 24 September 2016

On the Up

My surgery was three and a half weeks ago and I’ve been home from hospital (the second time) for a week and a half. I’m recovering slowly but steadily. Home is peaceful and T is looking after me very well.

My wound is still sore and I take my full allowance of paracetamol and co-codamol each day, but the skin has fully closed over and is looking healthy. I now possess four large scars on my torso and would have no trouble being a body double for a pirate. I already have the accent. Although swinging through the air on a rope with a cutlass in my teeth might be a bit much for me at present.

After the bowel surgery and the dramatic relapse my guts are very sensitive. I lost ten pounds during my two bouts in hospital. And I’ve been finding it difficult to eat enough to put weight on. I tend to eat little and often. I also have to take soft and easily digestible food. I’m only able to manage a half to two thirds of what I would normally eat at any one meal. I seem to get full up fairly easily. At the same time, T is on a diet and has to watch me munching through full-fat yoghourts, digestive biscuits and organic chocolate bars each evening.

I go for gentle walks a couple of times a day. I amble along, my wound twinging, down the lane from the house. I’ve made friends with the collie dog who lives at the first farm. He now accompanies me on my walks and escorts me back to the house. I reward him with a biscuit before he returns to the farm. I asked T to give him a name. She called him Rex. I saw the old farmer a few days ago and asked him what the dog was called. Strangely enough, he said Rex.

I’m also sleeping a lot, ten to twelve hours each day. Every afternoon, whether I feel tired or not, I close the bedroom curtains and lie down. I usually wake up an hour or so later. My habit is then to watch daytime TV. My favourites have been the reruns of ‘Sherlock Holmes’ with Jeremy Brett as Holmes and Edward Hardwicke as Watson, and ‘Time Team’ with Tony Robinson.

I’ve caught a few matinee films. I saw ‘The Producers’ for the first time for decades and was struck by how politically incorrect its humour was, with a series of jokes about Jews, Nazis, women, gays and so on. It featured the recently deceased Gene Wilder but the star of the show was undoubtedly Zero Mostel. I found myself happily singing along to ‘Springtime for Hitler’.

I was much less impressed with ‘For Whom the Bell Tolls’, starring a wooden Gary Cooper and a vivacious Ingrid Bergman, with little onscreen chemistry. It was a sort of Spanish Western with plenty of action on horseback and the blowing up of a bridge across a canyon. Location shots were impressive but the sets were rather tacky.

‘The Mouse that Roared’ was a curiosity. A vehicle for Peter Sellers (who played three roles) and a weak satire on the nuclear arms race. It was a cross between ‘Passport to Pimlico’ and ‘Dr Strangelove’, with few of the merits of either.

I’m still unable to concentrate very well. I can manage a newspaper article but I’m not yet ready to read a book. The print seems to swim before my eyes quite quickly and my head seems to have plenty of cotton wool inside. I hope the anaesthetic disperses soon.

Friday, 16 September 2016

The Alien Reappears

Dear reader, I am continuing to go to great lengths to survey the healthcare system of NI. Over the past week, I’ve been inside two ambulances and been treated in two different hospitals.

My recovery from surgery at the Mater had been going very smoothly. I went up to Belfast last Friday to get the staples out and the nurse told me my wound was healing well. But on the way back I began to feel unwell and went to bed when I got home. I was having difficulty breathing. In the evening I got worse. T rang the out of hours GP who asked her to check me over and said she should ring them back later. My breathing got worse and I began to have pains in my chest. Then I started vomiting. T called an ambulance.

After getting lost on the way here, they arrived about 10.30pm. Big Arthur escorted me into the ambulance, strapped me into a chair and hooked me up to a heart, pulse and breathing monitor. I was breathing fast and shallow, my chest was very sore right in the centre and I was vomiting up foamy saliva. ‘Can’t you breathe normally,’ complained Big Arthur, ‘you’re stopping the monitor reading properly.’ I panted and moaned. He spent a long time filling in my details on a form, and then we got started.

It was the worst journey I’ve ever had. Even worse than the day I spent on the back of a flat-bed truck in Laos with high fever. Every bump on the road jolted me. The pain in my chest got worse and worse. My blood pressure was through the roof. I was retching with the cold sweats. And it seemed to take forever. After half an hour or so Big Arthur said, ‘we’re in Banbridge, won’t be long now.’ Dear God no, I thought, that’s only ten bloody minutes from my house. The monitor was bleeping out its readings straight in front of me. I gritted my teeth, grasped my knees and rocked myself side to side. I just had to keep going, gasping through the pain. From time to time I glanced over at Big Arthur. He was asleep.

Eventually we drew up outside Craigavon Hospital. The journey had taken the best part of an hour (a drive I had done myself in half the time). Big Arthur helped me down the steps into a wheelchair. ‘You’ll soon feel better with a bit of fresh air,’ he said cheerily. Thankfully A&E took over. They wheeled me into a room called ‘Resuscitation’ and took an Xray of my chest with a portable machine. A young doctor with a Southern accent appeared. ‘You’ve got a 90% collapsed left lung,’ he said, and threaded a tube up my nose and down the back of my throat. ‘Swallow,’ he said. Not easy to do when you are retching. Then a huge rush of air, like a balloon deflating. He had got the tube down into my stomach and was relieving the pressure on my lung. I started to feel a lot better very quickly. ‘That was a big lung collapse,’ said the young doctor, ‘you won the prize for the Xray of the night.’ I gave him a weak smile. ‘You’ll be fine now,’ he said.  I was hooked up with a drip and moved into the main A&E room. Only then was T allowed to come and sit beside me.

We spent the rest of the night in A&E: me on a trolley, T beside me in a chair. In the morning I was admitted to the ward and given a CT scan. I was feeling much improved, my lung volume was already at 75% of normal. But the medical staff decided to transfer me to the Royal Victoria Hospital in Belfast. They were worried that I might need emergency surgery on my diaphragm. Another ambulance journey, but a much more comfortable one this time: they knew the way and Big Arthur was now off duty.

The following day I was examined by two medical teams at RVH. The thoracic surgeons were keen to do surgery to repair my diaphragm and pencilled me in for theatre on Tuesday. I was very concerned to be going in to another big operation less than two weeks after the last. The general surgeons reckoned that the bloated stomach had been caused by either a blockage in my small intestine or late-onset ilius (when your digestive system freezes after surgery). Both of these are common after bowel surgery. They recommended that I be monitored for several days instead of being given more surgery. Thankfully this last counsel was accepted. The next day, they detected bowel sounds and I began to pass wind. The day after, they took the tube out of my stomach and I was allowed to try food. Soon my guts returned to normal and after more tests and scans I was allowed home yesterday.

I’ve spent thirteen nights in hospital out of the past sixteen. It certainly feels great to be back home. I’m very much hoping that I will be recuperating here without any dramatic interruptions for a good while.

Wednesday, 7 September 2016

The Return

I’ve returned home from hospital with some things and without others. I have a sore foot-long wound from the centre of my belly to my right side that is closed by a line of staples, a very upset stomach, a pervasive feeling of bewilderment and an inability to concentrate. I have left behind the tip of my liver, six inches of my small intestine and a tumour.

My surgery was more extensive than planned because the scans taken beforehand hadn’t shown the full extent of the problem. What the surgeon found was that the tumour had regrown from my rear abdominal wall into my liver and it was attacking my small intestine. Fortunately, before he had become a liver surgeon he had been a bowel specialist. He first removed the tip of my liver, then removed a section of my small intestine that had been weakened by the tumour and finally he dug through my abdominal wall into the muscles of my side to try and remove all traces of the tumour. This meant that the procedure was more complex and took more than twice as long as planned. I was in theatre for two and half hours, then in recovery for two hours being given morphine and finally on the ward later in the evening (when this picture was taken).

This surgery was in effect rectifying the deficiencies of the surgery I had in Dec 2015 which removed the tumour but had left cancer cells behind at the margin. Since then the tumour had regrown at the same site. Worryingly this local recurrence had not shown up on the scans, which only registered a problem in my liver. On the plus side, this surgery was completed by an expert surgeon and it was also very timely as the tumour was set to spread into my bowel. You have around twenty feet of small intestine, so losing six inches does not make a difference. Amazingly, after being cut and rejoined the bowel tissues repair in twenty four hours.

I received excellent care in the specialist liver and pancreas unit at the Mater Hospital. If I was comparing Belfast hospitals on Trip Advisor, which I am now in a position to do, I would be giving the Mater five stars. The unit had fewer patients per nurse, as they did mostly very complex surgery. They also provided innovative pain relief, pioneered in Australia. I arrived back from surgery with a small tube sewn into the wound that pumped in local anaesthetic. This line stayed in for the first three days and made a huge difference. On the first morning after surgery the nurses always force you to get out of the bed and sit in the bedside chair. In December I was so sore I managed to sit for just five minutes. This time around, after more extensive surgery, I was able to sit out for three hours. On the second day I was able to do a short walk with a nurse holding each arm. On the third day I was able to walk on my own with the support of a frame. On the fifth day I was able to walk entirely unaided.

My recovery was also promoted by not getting ileus after surgery (when your bowels stop working). This had happened on both of my previous major surgeries. To some extent it is a bodily reaction to the trauma of surgery. It is also a side effect of morphine. Aware of this, I was sparing in my use of morphine over the first few days. But this was only possible because of the local anaesthetic in the wound. As my bowels were working (I was able to pass wind) I was allowed to sip water on the first day of recovery, then to try and eat soft food on the second day. By the third day I was eating half of the small portions that were provided. By the fourth day I was able to eat normally. But despite regularly passing wind, nothing solid emerged. At least I was only constipated.

On the fifth day I was told by my specialist that there was no medical reason for me to remain in hospital. The only issue was that my bowels had not opened. When this happened I would be allowed to leave. That day I had six sachets of laxative and walked up and down the corridor repeatedly. But nothing came. On the sixth morning I asked for an enema. Sister took me into the toilet, inserted a large plastic syringe into my back passage and squirted in a viscous fluid. I was instructed to sit on the toilet and try to hold in the fluid for as long as I could. The fluid stung my anus then cramps began.  As I closed the door of the toilet, Sister looked at me enquiringly. ‘My bowels have moved,’ I confirmed. She smiled and turned to a Staff Nurse, ‘this man is ready to be discharged.’ T called for me in the afternoon. All the way home my guts were grumbling. T helped me from the car into the toilet and the diarrhoea began. Not surprising, given all the laxatives and the enema. But a small price to pay for the delight of getting home.

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