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.