Trapped in a world of pain

July 14, 2014
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The two most painful operations a body can undergo, according to my anaesthetist, are knee replacement surgery and a lobectomy. And I’ve recently undergone the lobectomy. This is when a lobe of your lung is removed. To get at your lung, the surgeon must cut a big hole in the side of your chest, and spread your ribs apart. The muscles between the ribs are torn, other muscle is cut through, and sometimes, as happened with me, a rib is broken. I’d been warned the after-effects were painful. But when the anaesthetist popped his head round the hospital room door, I chided him about the pain. I know a sick person must ingratiate herself with the health professionals so they’ll like you. So I chided ever so gently: I’d had two babies without a whiff of pain relief, I said. I was no wuss. But I was now in unacceptable pain. “I thought hospitals were better at this pain management thing,” I said. That’s when he told me a lobectomy was one of the two most painful operations you can have. I, of course, was curious to know the other one. Hmmm. I won’t be getting a knee replacement in a hurry.

My doctors say I’m very lucky, and as I lay in pain, watching the play of winter sunlight on the grey walls, I tried to see it their way. I’ve joined the small but growing band of life-long non-smokers, the majority women, who’ve been diagnosed with lung cancer. They say lightning doesn’t strike twice. But it’s struck me twice. Seventeen years ago I was diagnosed with breast cancer. I’m lucky this lung cancer is a primary, unrelated to the breast cancer. And I’m lucky it was found, quite by accident, as a result of my regular ultra-sound/mammogram which led to other tests. The cancer was so small I had no symptoms (typically a long-standing cough, or coughing up blood). I’ve often boasted my lungs are the best part about me: I never get colds, flu, bronchitis, or asthma. Don’t be alarmed on my behalf by the awful statistics for lung cancer survival. With the cancer I have, its early detection, and the lobectomy by a top surgeon, the odds of my reaching old age are fairly good. I’m seeking advice on whether chemo-therapy can further improve my chances.

What I wanted to tell you about was pain, and the need for pain management specialists to be accorded status like heart surgeons. I feel I’ve visited another country, where you don’t want to go, but where a significant minority of Australians are stuck. My pain, hopefully, will not turn into the chronic suffering that affects one in five Australians, or one in three over the age of 65.  Back troubles, arthritis, neurological…the causes are many and the personal and economic costs huge. Too many are stoic and silent, or believe pain is inevitable as you age. The truth is it’s best headed off before it gets too severe. Three weeks after my operation, and with the right medication, my pain is manageable and declining. But I won’t easily forget the Nights of the Long Knives. Each night as the pain surged in, it felt as if a thick-bladed, stainless steel kitchen knife was wedged deep into my left lower back; and as if a clamp was pressed, like some medieval torture implement, to my ribs. The medication just didn’t touch the sides of it. I found myself thinking, in those lonely hours, of everyone I’d ever known who’d suffered terrible pain.

When I started this blog nearly 18 months ago, I determined to write little about health issues because, let’s face it, the list of ailments is endless at our age. It can get tiresome, and also, there are many good health websites run by experts. But with my new insight, I want to convey the need to elevate pain management as a national health priority. It’s crucial the millions of Australians who live with severe pain get better access to public pain clinics. It’s only relatively recently that pain and its consequences have been taken seriously, and that pain management has emerged as a medical specialty. In my case, it was when a doctor from the hospital’s pain management team saw me at my request that my situation improved. A change of medications and dosages wrought a miracle. I was returned to myself.

At a recent count there were only 275 pain medicine specialists in Australia, inadequate for an ageing population. Australians who live with severe pain can face long waiting times of five months or more to access public pain clinics. Lesley Brydon, the dynamic chief executive of advocacy group Pain Australia, said in the past two years some state governments had provided extra funding for regional pain services and GP education. “NSW has been outstanding and is the model for what should happen nationally,” she said. “And in parts of WA two-year waiting times have been cut to two months.” So there’s progress but still enormous unmet need.

Dr Jennifer Stevens, a pain medicine specialist at St Vincent’s Hospital, Sydney, told me: “We’re at the beginning of treating pain better. There’s so much we still don’t know.” What is being learnt is that opiates (strong pain drugs derived from, or mimicking, opium) are not the entire answer. Managing chronic pain involves psychological and life-style changes, exercise, and multi-discipline teams. I’ve tasted severe, ongoing pain. Mine’s diminished. My heart goes out to all those who live in chronic pain.

(And thank you to all who sent good wishes.)

What’s your experience with chronic pain and what’s helped? Please Comment.

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