Friday, 21 October 2016

The Corner

I feel as if I am turning a corner. It is now seven weeks since my surgery and five weeks since I left hospital. The pain of my wound is diminishing and my digestion is improving. I’m putting on weight and I’m able to walk further. There is still some way to go, but I feel that I’m approaching a more normal life; that strange mix of fears and reliefs that punctuate the life of a cancer patient.

My good friend Philip, who I have known since I was eleven, came from England to visit this week. We went to Murlough and did some birdspotting in Dundrum inner bay. But the most unusual bird we saw was actually on the way there, a Merlin flying ahead of us, scouting the hedgerow along a country lane. On another day we went to Castlewellan and walked around the lake. The autumn colours of the beech trees were just turning, and should be at their best in a week or so. Later we went to the Norman castle at Dundrum and surveyed the coast from the top of the keep. Climbing up the narrow spiral staircase was okay, going down was much harder and I was glad of the handrail as my legs got a bit tired and wobbly. We then had a good meal at Maud’s Cafe in Newcastle, finished off by Graham’s excellent ice cream.

I’ve been able to reduce the painkillers I take each day, from four to three grams. But night is still the worst and I often wake up with a throbbing pain in my right side after I have been lying on it awkwardly. I’ve been able to eat more at each meal and to take a more normal range of foods. I tend to try only one new thing at a time, as I can then gauge if there is a reaction in my digestion. Unfortunately both chocolate and marzipan have led to bad reactions, so I have to make do with cake.

T and I are involved in a competition. She is trying to lose weight and I am trying to gain it. The competition began a month ago. She was in the lead at first, but this week I’ve gone ahead by three pounds. I’m sure she will win in the end. The prize is a celebratory Mars Bar.

Next week, I have a review appointment with the surgeon who did my operation. I’ve been noting down questions to ask him, as and when I think of them. I always prepare a list of notes to take in with me, as it is hard to remember what you want to ask when you are in the room with the consultant. And you only get one chance to cover all the issues that you are concerned about. I know some of them don’t like being quizzed in this way, but it is my right as a patient to have my questions answered. It is far worse to be on the way home and then to remember a question that you should have asked.

I’ve not yet restarted any of my normal weekly groups. I do miss going to the Sing for Life Choir and the Queen’s Writers Group. I am becoming more robust, week by week, but I don’t quite feel ready to return yet.

Monday, 10 October 2016

David Hockney and the Flu Jab

I needed to go to Belfast to get the annual flu jab. I wasn’t looking forward to it. ‘You should add in a treat’, suggested T. After some pondering, I decided on the Hockney exhibition at the MAC. It had been recommended by a friend of mine. In the end, I was very glad that I went.

One of the advantages of being a cancer patient, indeed, it may be the only one, is that you are given the annual flu jab free of charge. Despite feeling under the weather, T drove me to Belfast for the jab. And a jab it certainly is; the vaccine is delivered by a broadish needle that the doctor forcefully inserts into the deltoid muscle of your upper arm. Thankfully, it was all over quickly and I was soon on my way to the MAC.

The exhibition space was on the third floor. It was free, but you still needed a ticket. So like many others, I went up to level three, down to the box-office in the foyer and back up again in the lift. The exhibition was billed as the first major show of Hockney’s work on the island of Ireland, surprising given his worldwide recognition. I thought back to the last time I had seen an exhibition of his work. It would have been twenty years before in Salt’s Mill in Bradford, Hockney’s home town. Salt’s Mill had been built by the Victorian social entrepreneur Titus Salt at the centre of his industrial village of Saltaire (like the Richardsons and Bessbrook). At that time I was living in a village in the Yorkshire Wolds, an area that Hockney had recently begun to paint in landscape.

Drawings and canvasses from throughout Hockney’s long career as an artist were crammed into a space that was subdivided into several smallish rooms. My initial thought was that the exhibition would all have been so much better shown in the Ormeau Baths Gallery, but, hey-ho, that was closed down in a political row over the opening of the MAC. But then I began to concentrate on the work.

Hockney is a very skilled draughtsman and drawing has been at the centre of his art since he studied in Bradford during the 1950’s. There were some early streetscapes from Bradford, then a roomful of portraits. Hockney is particularly good at capturing facial expression and bodily aspect. The portrait I liked best was of two men in bathrobes on easy chairs; the older man was looking at the viewer and the younger man was looking at the older.

The next room was dominated by two large pieces. The first was one of his large Californian pool paintings: sunlight, dappled water, a splash, a wobbly pink torso. On closer inspection it was made of coloured papier-mâché, which powerfully augmented the dappled effect. The second, was a series of 16 lithographs called The Rake’s Progress. These were inspired by Hockney’s first trip to the USA and were a reflection on Hogarth’s originals. Although witty and well made, they seemed a little dated in their critique: Bedlam was a row of identikit young men in jeans and T shirts with Sony Walkmans in their back pockets.

The final room was an assemblage of pieces from across his career. There were several of his recent Yorkshire Wolds' landscapes, drawn on Ipad and colour printed. The outcome was more like painting than drawing. I liked a large treescape the best. On the other walls were two very interesting series of lithographs inspired by Surrealism and Expressionism. The first series provided some witty pastiches of Picasso. The second series, called ‘The Boy who Left Home to find Fear,’ was largely expressionist in style. The series was inspired by Grimms’ Fairy Tales. I looked at the dozen or so plates again and again. This series, drawn 1969-70, was, I felt, the best piece in the exhibition.

In the car on the way home, I began to feel groggy. My body started to ache and my throat became sore. The side effects of the flu jab were kicking in. I went to bed and slept for thirteen hours. The next day I was little better, but I still felt groggy, weak and feverish.

The Hockney exhibition is on at the MAC until 16 October. It is well worth a trip. The flu jab is unpleasant in the short term, but hopefully worth it in the long run.

Sunday, 2 October 2016

Halfway House

Recovering from surgery and a couple of weeks in hospital is not easy. Progress is slow and seems imperceptible, as you have few accurate measures. You are not ill enough to need nursing care but you are not well enough to lead a normal independent life. You are on a passage between these two states. The defining characteristics of this journey are disorientation, discomfort and frustration. Your passage contains elements of what you are losing and what you are gaining. You are inching your way in-between.

My wound remains sore; less so than before, but I am still taking my full allowance of painkillers. I can walk further and more easily, but I still need help putting my shoes on. I continue to wear jogging bottoms as I can’t bear trousers because the hard waistband catches my wound. I’ve just started driving short journeys in the car; operating the controls isn’t difficult but the holes in the road still jog the wound painfully. I have to wear a pillow between me and the seatbelt. The guts are still very sensitive and I’m continuing to eat soft food and small meals, but I have gained a couple of pounds.

Rex the collie dog is my regular companion on walks down the lane. He’s always pleased to see me and is ready for a walk. He rushes on ahead and often diverts into fields to follow scents or to chase a rabbit. He’s curious about the world but seems to be afraid of sheep and cattle (a bit of a disadvantage for a farm dog). He has two most unsavoury habits. He loves to roll in fox shit. It is black and very smelly and makes him honk something terrible. And he loves to chase cars. When I hear a vehicle coming down the lane I have to grab his collar or he will be after it in a flash trying to bite the wheels. I shout and whistle to try and divert him, but he only stops when the vehicle outpaces him.

I’ve become frustrated with daytime TV, but I haven’t yet got back into reading. My latest diversion is internet surfing. I’ve been watching old episodes of classic programmes such as Steptoe and Son, Spike Milligan and The Two Ronnies. I imagine that a serial about the humorous co-dependency between a father and son, who are rag and bone men, would not get very far with commissioning editors these days. I noticed that Leonard Rossiter appeared in several of the early episodes.

My journey of recovery continues and I am doing my best to find a good way forward through the confusion. I researched rites of passage in organisations for my PhD, so I should know a good bit about this topic. The key source was the anthropologist Victor Turner, who also wrote about drama and performance. On my desk I have a figurine of a man with a red and yellow striped body and a black, red and white striped face and headdress. He is the Mwengo, a shaman who leads the boys out of the bush after they have completed their tribal rite of passage; he takes them back to the village as young men. I got him in Zambia.

I’m not sure who will be leading me out of my discomfort and into normal life. I have a review appointment with the Oncologist next week. Somehow, I don’t think it will be her.

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.