A Sense of Improvement

Its four weeks since the surgery and my third full week at home. I’ve probably been improving very slowly all of the time, but over the past week I’ve felt a noticeable improvement. For a start I’ve become more independent. I can now take all of my own clothes off and put them all on in the morning. I can even stick my own Lidocaine patch on my side. Last week T had to put my socks and my patch on before she went to work. My morphine prescription has been reduced but I don’t feel that I am in any more pain. I was taking 50mg a day when I left hospital, now I am on 30mg a day.

My life has settled into a routine of recuperation. I still sleep a lot. I generally get nine hours each night and a nap of one to two hours each afternoon. I can’t lie flat, I’m still sleeping semi-upright against a pile of pillows. I now get myself up and make my own breakfast. I take T her cereal in bed if she is not working. After breakfast I take the dog for a walk. I can walk slowly without significant pain and we have been to the bottom of the lane and back (a distance of two miles) each day this week. The consultant told me that regular walking was the key to recovery from a thoracotomy.  

During the walk I let Rex run free because he is too strong and will pull me on the lead and hurt my wound. Despite lots of effort we haven’t managed to stop him chasing cars. I think it is caused by fear that has been displaced into aggression. Although he is also afraid of cattle and sheep, but just cowers from these creatures. He also loves to chase rabbits.

After the walk I get Rex his breakfast and then rest for a couple of hours. I sometimes do some work on the computer but that tends to hurt my side after a while, using my arms and hands on the keyboard and mouse works my ribs. Sometimes I watch TV, Inspector Morse is often on late mornings. I make myself a lunch of fruit salad and toast. The aim is to help my digestion and keep me regular. I still take four packets of laxative a day.

After lunch I have a nap. Mostly I don’t feel tired, but I close the curtains, put my earplugs in and I am away for an hour or two. I then get up and take the dog for another walk. This time we go halfway to the bottom of the lane and back, one mile. By the time we get back, T is usually home from work. She makes tea and does the clearing up. We relax for the rest of the evening and go to bed around 10.30.

For a few days my friend Phil from the New Forest was visiting. He fitted in easily, going for walks or reading whilst I was resting. One day he came back with a couple of pounds of sloes, ready for making sloe gin. Another day we went out to the coast and took Rex. He is fine in a car as long as you hold him. Rex sat in the footwell and rested his head between my knees. We parked at Nine Arches and followed the boardwalk to Murlough Bay. I managed the walk alright as it is about a mile and half there and back. Rex enjoyed running wild across the beach but was afraid of the sea.

I found that the journey in the car was a surprisingly painful experience. The vibrations, cornering and acceleration/deceleration caused constant low level pain and then there were the potholes. I’m not allowed to drive at the moment. I don’t think I will be planning to go anywhere by car for a wee while.

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. 

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. 

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.