Thursday, 7 December 2017

Young Love

The surgeon told me that the wound in my ribs would be painful for three months. He wasn’t wrong. It’s ten weeks since my surgery. The pain has diminished but it is still stubbornly there. I feel it most often at night. I haven’t found a position to lie in that doesn’t put some pressure on my ribs. I have to get up straight away after waking, as standing up eases the soreness of the night. The pain in the daytime mainly comes from simple movements such as twisting and stretching, or when I use my arms to do something without thinking. Despite having a nap most days, I find that by the evening I’m rather tired. After tea I pretty much conk out. Recently I’ve been invited to all sorts of evening events, many of them in Belfast thirty miles away. It is of course the season to be jolly. But I’ve had to decline them all.

I’ve now graduated to the lowest dose of morphine, 5mg time-release over 12 hours. I take this at night. During the day I take co-codamol to the same value. I have prescription strength tablets, each of which have 15mg of codeine. I was told by the pharmacist that this is equivalent to 1mg of morphine. The co-codamol tablets you can buy over the counter in a pharmacy are half of this strength. So I have come down from 50mg a day of morphine when I left hospital, to 10mg a day now. I hope that I can be off opioids entirely by the New Year. I’m very much looking forward to the time when I don’t have to take three sachets of laxatives a day in order to keep regular.

The surgeon also told me that walking was the key to recovery. I go walking twice a day, most days, usually with Rex. He is happy going up and down the lane, taking excursions into the fields to follow animal trails. But I’m afraid I have to report that his affair with Glen, the blacksmith’s dog, has taken a turn for the worse. For a long time they were very much in love. They would greet each other affectionately, with licks and nips to the face and neck. Then Rex would mount Glen and pump away at his backside whilst growling enthusiastically. Then Glen would mount Rex. This sexual turn-taking could go on for a while. Indeed, when I eventually walked off and called Rex he would very reluctantly join me, but would soon return to Glen after hearing his plaintive cries.

The last time they met all seemed to be going as normal, until their rumpy-pumpy suddenly turned into a full-scale fight. I don’t know why. Both dogs leapt at each other, snarling and biting. It was a ferocious melee of twisting bodies, each trying to pin the other down and bite them. The fight spun across the lane as I looked on startled and helpless. Then, suddenly, it was over. Glen ran away and Rex stood in the lane shaking and panting through foam-flecked lips. As we all know, the path of young love does not run smooth.

Wednesday, 29 November 2017

Rex, Pavlov and Automobiles

It’s now nine weeks since my surgery and I have built up to walking four miles a day. I do this in two walks; one in the morning after breakfast and one in the afternoon after my nap. The first walk is down the lane to the end and back. The second walk is down the lane to the old railway bridge and back, finishing up with a loop of the laneway. The laneway has a fairly steep hill. At first I was just glad to get to the top. Recently I have begun to stride out on the hill and have found that I still arrive at the top without getting out of breath. I’m delighted, for this is something that I wouldn’t have been able to achieve, pre-op.

Both of these walks are done with Rex. Sometimes we are also joined by T. I’m still trying to stop Rex chasing cars. I read online that this is a distorted hunting behaviour and as such is instinctive. No wonder it is proving so difficult to stop. When he is in car chasing mode he seems to take no notice of anything else. One of the online suggestions was that distraction by a loud noise could interrupt his chasing behaviour. I found an old whistle I had bought in a junk shop. It was a referee’s whistle with a pea inside it, called the Acme Thunderer. It was loud and shrill.

I waited till Rex was about to start his chase of a car and then gave him a blast on the whistle. He stopped in his tracks and looked very confused. I called him over. He seemed disorientated. I called him again. He came and I gave him a treat. Delighted with this success, I tried the whistle again later in the walk when another car came. Rex stopped in his tracks again. When I got home I told T what had happened. We were both delighted to have found a solution to the car chasing problem.

The next day I set out confidently on the walk with the whistle on a cord around my neck. After a while a car came. I gave Rex a blast on the whistle. He completely ignored it and raced away after the car. Confused, I wondered if I had blown the whistle at the wrong moment. Later in the walk another car came by. I blew the whistle again as loud as I could. Rex again completely ignored it, bounding away after the car and biting at its wheels.

I pondered the problem. I think it demonstrates that Rex is a quick learner. The first day of the whistle he was startled by the sound and that interrupted his chasing. On the second day he had learnt the sound and the whistle wasn’t a problem for him anymore, so he continued with his instinctive behaviour. I pondered further, remembering the story about Pavlov and how he had conditioned dogs by ringing a bell when they were being fed. Afterwards they would salivate at the sound of the bell, without any food being present.

Actually, when I looked it up I found that Pavlov had in fact never done this experiment. It is an apocryphal story that appears to have originated from a bad translation of one of his research papers written in Russian. He was a vivisectionist who used dogs in his medical experiments, many of which were pretty gruesome. What he actually reported was that the dogs salivated at the sight of his assistants white coats, because these were the people that fed them. He never used bells with the dogs.

Anyway, I decided I would try and teach Rex to associate the whistle with food. Each time I gave him something to eat I blew the whistle. At first he seemed a bit confused by this, but then he just wolfed the food down as normal. What I’m hoping to do next week is to start blowing the same whistle when Rex is about to chase a car. Hopefully his desire for food might override his desire to chase. I’ll have a pocketful of treats ready. I think it’s worth a try.

Thursday, 23 November 2017

Driving and Dental Surgery

Over the past week I have made the thirty mile journey up to Belfast three times; on two of these occasions I drove myself. I suppose I have been fledging, testing my wings to see what I can manage. I had to put a pillow against my side under the seatbelt, but I completed the drives okay. I took it steadily, after eight weeks off I felt a little rusty. I was tired and my side was sore when I got back home each time, but I was pleased with my achievement.

The first trip was for the sixteenth edition of The Squat Pen, part of the CS Lewis Festival. I am very thankful to my co-host Ray Givans who did much of the organising of the event. My contribution was mainly to the online publicity. We were in a new venue, the deconsecrated St Martin’s Church, which was an excellent space but in a rather out of the way location without parking nearby. All of the contributors gave great performances to a smaller than usual audience. Our special thanks go to Paul Maddern, who stepped in as our main reader when Fred Johnston pulled out through illness. Indeed November must be the illest month, as I had to step in and select the Desert Island Poem at short notice, after Mary Montague pulled out with a sore throat.

Second was for the AGM of Cancer Focus NI. This is a great local organisation that provides fantastic support for cancer sufferers and their families. Since my diagnosis in 2011 I have benefitted from a range of their services, including counselling and residential workshops on learning to live with cancer. Indeed, I have been an active member of the Sing for Life Community Choir since it was founded by Cancer Focus in 2013. I had put my name forward to serve as a Non-Executive Director and Trustee and I’m delighted to say that I was elected. I’m looking forward to helping to give something back to this important and much needed local organisation.

Third was for an appointment with Dr Mark Diamond for a dental implant at his specialist clinic on the Antrim Road. He is the most experienced implant dentist in NI, having done this work for twenty years, and his clinic is referrals only from other dentists. I needed to be there because I have some poor teeth. This is due to a combination of gum disease, inherited from my mother, and decades of poor dental treatment. I had been referred to him from my normal dentist because I had reached the end of treatment for the tooth in question, it had first split and then had been extracted.

The treatment began with my mouth being numbed by a series of injections. Then I had a panoramic scan done of my full mouth. Mark showed me the results. He could see exactly how much bone I had in my lower jaw and where the main nerve ran. This meant he could decide how deep to drill and the exact right size of implant to insert. The next step was he and his nurse putting on surgical gowns, gloves and masks. Then the surgical treatment began.

He first cut open my gum to expose the jawbone. Then he began to drill down into the jawbone. It sounds dramatic but you don’t feel anything. He used a long straight drill rather than the small one used to drill into teeth. It took a little while. He told me that I have a tough jawbone. And when the hole had been drilled deep enough, he screwed in a titanium bolt with a little torque wrench. It felt like someone doing DIY on your mouth. The wrench clicked as he screwed in the bolt until it reached the correct tension. The titanium bolt has a threaded top into which a removable cap is screwed. Then he stitched up my gum.

The implant bolt is left in your jaw for at least three months for the bone to grow strongly around it, before the next steps are taken. I drove home with a numb mouth and a short course of antibiotics to ensure there would be no infection. After a couple of hours the injections had worn off and my jaw was a little sore. I took a couple of co-codamol and rinsed my mouth with warm salty water. I’d have to eat on the other side of my mouth for a few days. But, in comparison to the other operations I’d had in recent years, this was nothing to make a fuss about.

Wednesday, 15 November 2017

Sleep and Sex

Over the past week I have been transitioning from sleeping upright against a pile of pillows to sleeping lying down. It’s not been easy going from ten pillows to just one. I had been sleeping upright for seven weeks and I’d got used to it. Sleeping flat seemed very odd; it felt like my legs were higher than my head. When I woke up after sleeping upright, my neck and legs were very stiff. When I woke up after sleeping flat, my ribs felt like I had been several rounds with a heavyweight boxer. I think it’s because the mattress puts more pressure on your ribs when lying flat and you also move around more in your sleep.

Anyway, I persisted and now I can sleep the whole night lying flat. Despite waking up with sore ribs every couple of hours, I managed to sleep my normal nine hours or so last night. It’s another good step towards normality. Although, I would normally go to sleep on my left side and I can’t do that because of the wound. In the morning I still get up straight away as standing up relieves the accumulated soreness of the night. As the activities of the day inevitably bring tirednesss and soreness, in the afternoons I still go for a nap but I don’t always manage to fall asleep. Sometimes I just rest for an hour or so.

In the sunshine on Sunday, T and I did a three mile loop walk around lanes from the house. Despite the route having several small hills in it, I managed it fine. My breathing already seems better than it was before the op.  I still take Rex on walks down the lane and back twice a day. I’m trying to stop him chasing cars but with limited success. My current strategy is to teach him to come to me when I call ‘here’ and to give him a treat when he does. When a car comes along the lane I shout ‘here’ loudly and once or twice this has interrupted his desire to chase and somewhat hesitantly he has come to me for a treat. A few times he stopped chasing the car when I called and chased his tail in circles in the middle of the road and another time he ran off madly across a field instead.

The blacksmith down the lane has got a new dog, a male short-haired collie called Glen. The first time they met Glen jumped up and placed his front paws around Rex’s neck and began to lick and bite him playfully. Rex eagerly did the same back to him. There was plenty of growling. Then Glen mounted Rex from behind and began to pump away at his arse with his little red willy out. After a while, Rex leapt on Glen from behind and began to pump away at him. But Rex didn’t have his willy out and was also pumping away at Glen’s thigh rather than his arse. Methinks Rex is a little more innocent than Glen, but he has discovered sex and each time we walk down the lane he keenly looks out for Glen. The blacksmith now calls them ‘the lovebirds’.

Tuesday, 7 November 2017

A Review with the Surgeon

Almost six weeks since the surgery and I was on my way to Belfast to see the surgeon for a review. It was the first time I had travelled that far since leaving hospital. Indeed, I was retracing my steps. I never really paid attention to it before, but a car journey is full of low level vibration, presumably from the road surface. Then you get jolts from potholes and braking and cornering. All of this irritates the wound. I placed a pillow at my side, between my torso and the edge of the seat, and this helped a little. It seemed a long way.

After five weeks at home, I feel I’ve definitely turned a corner. My recent improvement feels secure. I am now fully independent in the house, being able to manage my own washing, dressing and feeding. I make my own breakfast and lunch. T always makes tea. My morphine prescription has been reduced again to 20mg a day, in two 12 hour long-release tablets. This together with the Lidocaine patch and Paracetamol is managing the pain. I am walking for over an hour each day. But I am still unable to lie flat for any length of time.

When I was discharged from the Royal I was given a form for an X-ray. This was to be taken half an hour before my review appointment. We did as requested and then went to wait in Outpatients. As usual there was a delay. When I went in to see him, the surgeon had my X-rays up on his screen. He showed me the difference between today’s and the one taken pre-op. My left diaphragm was now fully down (the X-ray is taken on full inspiration) and my entire left lung appeared to be inflated. Previously my left lung was squashed up, as half of its space was taken up by my stomach. Now there was no visible difference between my left and right lungs.

Today’s X-ray looks very good, he told me. I asked him how much of the functioning of my left lung I would get back. He said that I would get a lot more than I had before but not 100%, as the mesh patch would not work as well as my native tissue. The exact change would be measured by the breathing tests I did annually with my Respiratory Consultant. He advised me not to do these for at least three months as they would be putting stress on the repair. He also told me that the main stressors on the repair to the diaphragm were coughing and straining on the toilet in constipation.

I took off my top and he inspected the wound. He pointed out the four large surgical scars on my torso to a junior colleague and said I looked like a surgical model. I didn’t ask if he wanted to book me in for any lectures. He told me that the wound was healing well but that I needed to be careful for six months as this is how long it would take for the intercostal muscles, which join the ribs together, to fully repair. He told me that my regular walking was very good and I could slowly increase the exercise I was doing. He also said that I could now start to drive again.

We drove back from Belfast around 4pm, the rush hour traffic was building up, my wound was sore and I was tired. I wouldn’t be rushing to start driving again. And even then I would begin with just some local trips. But this was another good step forward on my return to normality.

Saturday, 28 October 2017

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.

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.