Friday, 20 October 2017

The Contours of Pain

The second week out of hospital presents different challenges to the first. With the tireless T always ready to help, we are slowly adjusting to my pain and to my incapacity. In the last couple of days I’ve become able to get into and out of bed by myself. I can also put my own trousers and shoes on, although not my socks and pants. I am feeble and awkward in my movements so T supervises me carefully. I have become like a toddler who needs to be closely watched in case they get themselves into trouble. She has placed a small brass bell, shaped like a woman with a wide skirt, at my bedside which I ring if I need help. All of this progress is very recent. It has only happened because my pain is now being much better managed.

For a long time the level of pain continued unchanged. It was relentless. It began in my wound and stabbed across my ribs into my abdomen. Pain turns you in on yourself. You are stuck in an oppressive private world. You withdraw from anything that causes the pain. And you have to take a deep breath and prepare yourself for any unavoidable movement that you know will cause pain. For me, this meant any movement of my torso and arms. I moved reluctantly and remained for hours after settling in bed or in an armchair. As every step was painful, I had to force myself to walk a little and do some breathing exercises.

I recalled what the surgeon had told me about nerve pain at our meetings before the operation. He explained that nerves run along each rib in grooves that follow the top and bottom edges of the rib. In doing a thoracotomy he would place me on my side, slit the intercostal muscles that hold the two ribs together from back to front and then insert a mechanical device which spreads the ribs wide to make the space for the procedure on the diaphragm and lung beneath. He explained that some nerve damage was inevitable, but the extent of it depended on how deep or shallow the grooves in my ribs were and how well recessed my nerves were in these grooves. At night my back and ribs were so painful that I imagined that my nerves had been well and truly crushed in the surgery.

When I was on the ward in the Royal I met a Pharmacist called Mal who consulted with each patient about their pain and the options for pain relief. He told me that I couldn’t take the two main drugs they would give patients for nerve pain. Pregabalin was one, which I had been given previously and had taken an adverse reaction to. The other was Diclofenac, in a category of drug called NSAIDS, which I couldn’t take because I only had one kidney.  Instead I was put on a drug called Nefopam. I had been taking this three times a day but I didn’t think it was having much effect on my pain.

I rang the ward to ask for their help. I spoke to a junior doctor who was preoccupied with patients on the ward and who wouldn’t venture an opinion on the alternative drugs I could take. I asked her to pass on a message to Mal the Pharmacist or to ask one of the senior doctors to ring me. No-one rang. I tried the ward again the next day and asked for Mal. They told me to ring the Pharmacy Department. I rang them. They told me that Mal was at work in the hospital but they would text him my number. Hours passed, I felt that I was being left on my own with the pain.

The phone rang. It was Mal. I thanked him and explained the problem. He considered it carefully. In the short run I could take more Morphine, but this wasn’t advisable because of the bad side effects on my digestion and the risks of addiction. Indeed they wanted me on the minimum dose possible and wouldn’t want to increase it. He said the only real other option was a pain-killing patch which I would wear for 12 hours each day. It was called Lidocaine and was most often used for shingles.

Armed with this knowledge I went to my new GP practice the next day. I got a locum. He listened to my story, gave me two more weeks supply of Morphine but said he wouldn’t be able to prescribe Lidocaine without some documentation from the Hospital. I left the surgery exasperated and unhappy.  When I got home I rang the Hospital and asked for Mal again. He rang me back a couple of hours later. I explained the problem. He looked up Lidocaine and found that it was only licensed in General Practice for use against shingles. He told me I would have to get one of the senior doctors on the ward to contact my GP. My heart sank. I knew this would be next to impossible, given how busy they were.

I spent another painful and unhappy night. The next morning Mal rang me again. After our phone call yesterday he had gone back to the ward and discussed my case with one of the doctors. He wanted the name and phone number of my GP. I thanked him profusely. A couple of hours later I got a call from one of the Thoracic consultants, he had spoken to my GP and I would be prescribed Lidocaine. I thanked God for the conscientious and hardworking Mal who had helped me out after I had been discharged from his responsibility.

The Lidocaine patches are A5 in size. T sticks one down my back, below the wound, and one across my ribs at the side. They feel very cool to the skin and sting a little. They are not magic, but they do take the pain down a notch. They make it possible to for me to carefully embark on simple movements. I’m delighted that I don’t have to wake T each time I want to get into or out of bed. They make short walks manageable. They also make it possible to try too much and get severe stabs of pain during, and aching soreness after, some movements. Despite this, I toddle on. 


Wednesday, 11 October 2017

Easement

The first week out of hospital isn’t easy. T has cared for me tirelessly. But away from hospital you are left with your wound, your incapacity and your drugs. There is no doctor or nurse on hand to check you over when you are feeling strange. You are at the start of a long journey of recovery that will take many weeks. Most of the online advice seems to suggest that you should expect some initial setbacks.

My bed is comfortable but not in any way adjustable. On the first night we piled up all the pillows from the house and T carefully lowered me back against them. The slow descent was very painful. I gasped with relief when resting semi-upright against the pillows and managed to sleep for a few hours. I woke up stiff and in pain. T helped me up and I walked to the toilet to unstiffen my bones. I took a shot of morphine before she lowered me back against the pillows. This performance was repeated before morning and has been every night since.

T also has to help dress me. I can’t bend sideways or downwards. It is like being a child again. She holds my pants and trousers open for me and I put one leg in and then the other. I can put my top on myself but she has to put my socks on and do my laces up for me. After this I can get around the house alright. After breakfast I make myself walk for five minutes before I sit in the armchair, which I can just about get into and out of myself. Daytime TV is as bad as it was last year.

The pain in my ribs is always there, it rises and falls: sometimes a sharp stab or burning sensation, other times a grinding ache. Its constancy wears you down. The morphine only takes the edge off it. I’m very tired and sleep for a couple of hours each afternoon. I don’t have any energy or enthusiasm but I make myself go for little walks and do my breathing exercises. I also don’t have much appetite; I’m managing about half of what I would normally eat. Despite their challenges, all of these problems are to some degree anticipatable or normal for the situation I am in.

The problem with my guts was different and worrying. Since the operation I have been very bloated with cramping in my bowels. Despite taking four packets of laxatives a day, I had not passed anything, not even wind since I was discharged. Indeed, the only bowel motion I’d had at all was due to an enema in the Royal and felt very abnormal. I’d had enemas prior to discharge on each of my previous times in hospital. They had followed the same pattern. The enema softened an impacted stool and induced cramping and convulsions in your rectum sufficient to pass it. After the log was gone the bowels began to work normally. But this time there had been no impacted stool, just minor cramping and a small amount of diarrhoea.

During the surgery my stomach and bowels had been moved from my thorax into my abdomen. This meant that there was the potential for some obstruction. The symptoms for a partial obstruction were those that I was having. After several days the bloating and cramping became worse. We went to see the GP. She felt and sounded my abdomen. She wasn’t sure whether there was an obstruction or not and sent me for an X-ray.

I had the X-ray done at a shiny new health centre in Banbridge on Friday. The pictures were sent to Craigavon Hospital marked ‘urgent’. By the end of the day the GP rang to say no report had come through. She advised us to go to A&E if my symptoms got worse over the weekend. On Sunday I was more bloated and crampy. T rang the Out of Hours service. They asked me to come in that evening for an examination at Daisy Hill Hospital. The doctor gave me a cursory glance and a quick prod without using her stethoscope and sent me away with gelatine suppositories.

I woke early on Monday morning in more pain. We decided to go to A&E at Craigavon. Arriving at 9am, the waiting room was fairly empty and I was attended to quickly. They checked my X-ray and told me there was no obstruction visible. They said that my colon was full two thirds of the way around, but my rectum was empty. So the enema in the Royal had only shifted a little of the constipation. They said another enema wouldn’t help and I would have to increase the dose of laxatives and that eventually this would work. The source of the problem was the morphine, which had the side effect of slowing my bowels almost to a standstill.

Reassured we went home. I took more laxatives and waited. Later on I had a semi-normal bowel motion. After thirteen days it felt so good to have my normal functions restored. As the bloating and cramping began to reduce, my mind turned to the grand medieval toilet I had seen at a ruined monastery near York. The monks had diverted a stream and built several dozen stone seats back-to-back over it. As far as ancient toilets go, it was an advanced design complete with running water. The building was called the House of Easement. 


Tuesday, 3 October 2017

Confessions of a Morphine-drinker

I’m home from hospital. The surgery was last Tuesday afternoon and took three hours. After several more hours in the recovery room, I was back on the ward. The surgeon told me that the procedure had been a success. I had a foot-long wound across my back and around my side, held together by a line of surgical clips. But I felt little pain, only mild discomfort in my shoulder. I had an epidural line inserted into my spine between my shoulder blades which pumped in Fentanyl, a very strong synthetic opiate, making the central band of my ribs completely numb. This had been there throughout the operation and would stay to enable me to reinflate my lung without pain.

The surgeon found that my stomach had become twisted through the hole in my diaphragm and had stuck to the lower part of my left lung, with my spleen compressed against my ribcage. No wonder I had gastric and breathing problems. The surgeon also said that correcting these defects had been very timely as serious and potentially fatal problems could easily have developed. He told me that my diaphragm was thick and healthy with a good blood supply (a legacy from many years of running and mountaineering) so that the mesh repair should be strong and lasting. I was very relieved, as I went into this surgery not knowing what exactly would be found and whether a repair would be possible.

For the first two days I was attached to eight different devices. My vital signs were recorded and monitored, I had an oxygen mask, a saline drip, the Fentanyl was pumped in through the epidural, and my chest was drained of fluid as was my bladder. There were tubes and lines everywhere. I felt exhausted and lightheaded. On the second day I was got out of bed for several hours and moved around the ward by two physiotherapists who carried all the equipment and shouted encouragement.

On the third day the chest drain and the epidural were removed. Then came the pain. It stabbed across my back around my side and into the centre of my chest with every little move of my torso. They gave me morphine, but it wasn’t enough. They increased the dose. It still wasn’t enough. They added in another type of painkiller and gave me liquid morphine on demand. This began to take the edge of the pain.

They said I would soon be ready to go home. I complained, I was barely able to move myself off the bed and into the chair. My prostate came to my aid. When they took out the catheter I was hardly able to pee. They put the catheter back in, at the third attempt, and put me on prostate reducing drugs. I sat in bed with a very sore penis and stabbing pains across my chest.

Nights were the worst. However comfortably the bed had been set up, I would invariably wake up a few hours later in agony. I would ring the nurse and request my morphine. She would bring it in a small needle-less syringe. I would squirt the morphine into my mouth and suck the end of the syringe. It tasted both salty and remotely fruity. But it worked and quickly. A warmth spread across my wounded chest and I would relax into sleep, until I again woke in agony.

After two more days the catheter was taken out and my pee was normal. They gave me an enema, which worked, and pronounced me fit to be discharged. I said I wasn’t sure that I was ready to go home because my guts didn't feel right and asked to stay for one more night. They told me firmly that I was being discharged and that my bed had been booked for another patient who needed surgery.

After work, T drove me home. People rushed past us, scooting back for tea or to the supermarket. The busyness of everything seemed faintly absurd. The sun was setting and newly fallen leaves skidded on the wind. I was glad to be at her side again. Despite the challenges, we would make the best of it. After all I had a big bag of medications with me, including my own bottle of liquid morphine.



Saturday, 23 September 2017

Apple Picking, Scan and Surgery

Our house is suffused with mellow fruitfulness. The apple tree produced a bumper crop of about a thousand apples. We cooked loads and stored the fruit in the freezer. We gave bagfuls of them away to friends and neighbours. Still hundreds of apples lie on newspapers in the living room and lounge. After apple picking came two weighty pieces of medical news. Both arrived on the same day.

First I learnt that my latest CT scan is clear. Needless to say this is an enormous relief. It means that I have been clear of cancer for one whole year, as I was discharged from hospital in September last year after cancer surgery. Following months of recuperation, I was left with a nagging pain in my side. I was told by the surgeon that this was nerve damage. Over recent months the pain has slowly diminished and today I only feel it on a bad day.

Second I got a letter from the Royal Hospital Belfast telling me I am planned to be admitted next Monday for surgery on Tuesday. This was a bit of a shock. I had been expecting this call in June and when it didn’t come I put the surgery to the back of my mind and got on with enjoying the summer. We had a lovely staycation with plenty of fine trips. Now this stay of execution has been suddenly rescinded.

The surgery is to repair a hernia in my left diaphragm that was caused by the first big cancer operation I had in 2011. Since then much of my stomach has been in my thorax depressing my left lung. After a while I got used to this problem and managed to live an active life despite it. But I have been persuaded that it is important to get this hernia fixed to improve my symptoms and to guard against future problems and deterioration. I have been getting troublesome gastric symptoms (IBS) over the last year and am now on the FODMAP diet.

This is a big operation, a thoracotomy. This means that they cut between my ribs and open my thorax. Then the surgeon can see the exact nature of the hernia and the level of difficulty of the repair. This is not clear on the imaging that has been done thus far. The surgeon with then cut my stomach from the diaphragm, reposition it in my abdomen and patch the hole with mesh.

I am expected to be in hospital for around two weeks. The recuperation is long and slow as I can’t put any strain on my diaphragm for at least three months. And my rejoined ribs will be extremely painful. I hope that next year I can begin to build up my strength and fitness and restart singing, hillwalking and cycling.

Unlike each of my other operations, this is elective surgery. It is my choice whether to have it. And since the letter came I have been plagued by fears that I will be worse off after the surgery. Alongside this is the resentment that I have to go through another year of pain and incapacity just because of a mistake that a surgeon made.

As the surgery is elective, it is also the NHS’s choice when to do it. I have to ring the ward on Monday morning and check if I can still be admitted that day. A more urgent case could have come along over the weekend and I would be displaced and postponed.

There is of course a long list of things that need to be done around the house before I go in to hospital. I am steadily working my way through them with much trepidation. T is doing similarly, in the knowledge that she will have to look after me and Rex together over the coming months. It’s not going to be easy.




Sunday, 10 September 2017

Rex

The old farmer down the lane got a new dog and wanted rid of his old dog, Rex. He told us that Rex was ‘no bloody good’ and he was going to shoot him. We said that Rex was a fine, friendly dog. The old farmer insisted Rex was ‘no bloody good’, but said he would give him to us if we wanted him. We thought for a while. Now Rex the farm dog is our dog.

The old farmer kept Rex chained up for most of the day. Sometimes Rex would be loose and would often walk with us when we went down to the bottom of the lane and back. Sometimes he would come all the way up to our house and then stay around in our garden until dusk, when I would walk him back to the farm.

Rex always seemed hungry. We made a point of giving him food whenever we could because we thought that the old farmer wasn’t feeding him properly. This situation got worse when the new dog arrived. Rex was displaced from his spot in the yard and shut away somewhere each evening. He seemed hungrier and thinner; the new dog was being given most of the food.

We bought Rex a large wooden kennel and put it under the bay window at the front of the house. We were told that we would have to keep him chained up for a while before he got used to his new surroundings. I got a long chain, twenty five feet, which was tethered beside the kennel. He could run onto the lawn and go as far as the front door.

The first night Rex refused to go into the kennel and slept on the doormat inside the front porch. He howled during the small hours. The next day I tried to coax him into the kennel with food, but he still refused to enter it. That night he again slept on the doormat and howled. The next morning T stroked him and sang, ‘How much is that Doggie in the Window?’ for him. He enjoyed it.

I quizzed several local dog owners about why he wouldn’t go into the kennel. The first said that he was bound to go in, just give him time. The other said perhaps he was scared of it because he had been locked up in a small dark space. This seemed most likely, and probably happened after he was displaced by the new dog at the farm.

The third night he again slept on the doormat but didn’t howl. Rex seems to have rapidly got used to us and his new home. He is only 18 months old and seems eager to learn. We take him on walks on a lead as, whilst at the farm, he developed a bad habit of chasing cars. When a car comes by we make him sit and when he tries to leap up and chase it we say firmly no and push him back down to sitting. After the car has gone and he remains sitting we give him a treat.

Yesterday, I let him off the chain and he happily ran around our large garden and didn’t try to run back to the farm. He went into our neighbour’s garden, but came back when called. I patted him on the head enthusiastically. His head was wet and sticky. He had been rolling in fox shit. Ah, the joys of dog ownership.


Sunday, 3 September 2017

Revisiting Donegal

To mark the end of summer we headed to Dunfanaghy for a short break. T was keen to revisit places where she had holidayed as a child. And my first holiday after moving to NI nineteen years ago had been a cycle-tour of Donegal. The weather forecast was for rain, but we struck it lucky. On each day of our trip the sun shone brightly, the sea sparkled and the hills gleamed. Whilst there was the occasional rain shower too, they soon passed and the sunshine was restored.

We stayed at The Mill in Dunfanaghy, an award-winning restaurant with well appointed rooms. It was formerly a flax mill and then the home and studio of Frank Eggington, who painted acclaimed watercolours of Donegal. The Mill is run by the grand-daughter of the artist and her husband is the head chef. Paintings line the walls throughout, many by Frank Eggington himself, alongside collections of oriental pottery. Our room looked out over a reed-lined lake towards Muckish.

Building on a succession of awards for its food and hospitality, The Mill won the prize of best restaurant in Ulster this year. It offers a six-course menu. You relax in armchairs in the lounge and make your selections, appetite whetted by home-smoked olives and a small glass of gazpacho. For my starter I had goat from Horn Head on a bed of finely chopped bacon and potatoes. After a sorbet, my main was local lamb, served three different ways: a chop, a steak and a croquette, garnished with samphire and kale. My dessert was lemon tart with lime sorbet coated with meringue. Afterwards we struggled back to the lounge for coffee and petit-fours. And after a sound sleep we went  down to an indulgent breakfast, with home-made carragheen, preserves, stewed fruits and breads, followed by the best fry I have ever tasted, with organic meats, duck eggs and home-made potato bread.

No wonder The Mill has won so many awards, every course of each meal was extremely well prepared and presented. After such luxurious repasts we needed to be active. On the first day we went to Ards Friary and walked around the coast and into the Forest Park. It is a very unspoilt peninsula: just sea, sandy beaches, rocky outcrops and trees. Across Sheephaven Bay you could see the long strand of Tramore and the developments around Downings.

On the second day I went cycling, as T searched for the old haunts from her childhood. She drove me to Creeslough and I cycled to Carrigart then across the new bridge onto the Fanad and around the coast to Fanad Head. As I arrived a rainstorm began, just as it had nineteen years before, and I ended up sheltering under the same trees. After half an hour it cleared. I then returned via Milford and around Mulroy Bay back to Creeslough. I had forgotten how hilly the roads of Donegal are. I had climbed to the top of Slieve Donard in the 52 miles I covered. By the end I was so tired that I had to rest on the bed before I was able to summon the energy to go down for the evening meal.

On the third day we went sightseeing. T delightedly showed me the places she had visited the day before. We drove and walked around Horn Head, got fantastic views out to Tory Island, climbed to the battlements of Doe Castle, had lunch in McNutt’s Cafe at Downings and went walking on Tramore Strand. After we did the Atlantic Drive and then went over the new bridge to Fanad, ending up at the lighthouse. As the sun began to slide down towards the shining sea we had to set off for our return journey. We had packed plenty into our break and we were pretty tired. But it was good to know that all these riches were only three and a half hours drive from our house. And the past was not such a far country.



Monday, 28 August 2017

Tour of Meath

This sounds like a cycle race. But it was a tour that T and I just did by car. We were exploring ancient sites chosen by Peter Harbison, the former head of the National Museum of Ireland. I was given a copy of his guide book ‘Monuments of Ireland’ as a going away present from my job in England when I left to join Queen’s. The book was given to me by Des, a young colleague from Mayo, and it has been by far the best and most used present I received.

That was in December 1997, during those almost twenty years I have travelled through every county of this island by bicycle searching out the ancient sites he picked out as the most interesting. It has been a process of exploration as many of these ancient sites are difficult to find. They are often in fields surrounded by cattle, behind new bungalows and rarely signposted. You need a good OS map to find most of the sites in the guide and even then some still remained undiscovered.

The Irish approach to antiquity appears to be benign neglect. The ruins are usually left alone and rarely exploited by the heritage industry. I am all for this. I can’t stand interpretative centres with their mock ups and models, as you often get in England, I want to experience the real thing.

We started in Ardee. This is the only town I know with three castles on the main street. They are tower houses. The sort that you got a government grant to help build in medieval times. You find these throughout the Pale. Then we went on to Cruicetown, which was a settlement built by the de Crys family around 1200. They were Normans. All that remains is a ruined church in the middle of a field of cattle with later family tombs in it. We picnicked there using a large flat tomb as a table. Interestingly, over centuries the spelling of the family name changes to Cruise. So is this quiet site now in danger of being overrun by Scientologists and film fans?

The next stop was Kells, which had a large monastery founded by monks from Iona who were fleeing the Vikings. The Book of Kells was said to have been written there in the 9th Century. But the monastery was raided repeatedly by the Vikings and the Irish and burnt and the Book stolen. All that remains of this is a large round tower and four high crosses, most of which are in a dilapidated state.

Travelling back in time, we went on to the Hill of Ward. This is a splendid isolated hill with earthworks. It was said to have been founded by Lug and dedicated to the sacred fire. For thousands of years there were gatherings here to celebrate the passing of autumn and the beginning of winter. In ancient times, all the men of Ireland were called to take part. This was the feast of Samhain, which has been sort of transposed into Halloween. From the top of the hill you can clearly see Slieve Gullion and the Wicklow mountains.

We spent a good while at Trim, the town with the greatest concentration of ancient sites in Meath. It has the largest and best preserved Norman castle in Ireland, which featured in Braveheart (this Australian-Scottish epic was all filmed in Ireland)). Along a lovely riverside path beside the Boyne is a huge 12th century monastic settlement, as well as remnants of a 14th century abbey, town walls and tower.

Then we followed the Boyne up to Bective Abbey, a well preserved Cistercian monastery with a fine cloister. We ended up at Duleek at the remains of an Augustinian priory, where the youth of the town were hanging out, smoking dope and having pizza delivered. They sat on a large flat tombstone and ate their repast. We repaired to the restaurant next door, which happened to be in an old church. It had been a grand day out that had ranged over many centuries, a salutary lesson in learning from the past and living for today.