Cicero tells of a courtier named Damocles, invited to a banquet hosted by the emperor Dionysius, who requests that Damocles is seated beneath a sword suspended from the ceiling by a single horse hair. Initial delight at being placed in the seat of honour turns sour when Damocles realises the ever present threat of untimely death.
I was fascinated to hear the term “Damocles syndrome” used to describe the psychosocial stresses experienced by survivors of childhood cancer. No story could more accurately describe the legacy of overcoming the original diagnosis.
There was no formal psychological support ... where I was treated
Sixteen years ago I developed an osteosarcoma of my femur and underwent an above knee amputation and a prolonged course of chemotherapy. I was 16 at the time and hoping to become a doctor. My life was irrevocably changed by this experience—not as you might suppose for the worse. I have experienced an intensity of life that I do not regret, in living each day as if it were my last.
The period of initial surgery and chemotherapy was incredibly traumatic. It was a time of pain, fear, and confusion on an overwhelming scale. It was only my family and my faith that enabled me to overcome the despair I felt. There was no formal psychological support provided for patients with cancer and their families at the hospital where I was treated. We muddled through with a combination of self help, close friends, and prayer.
A year after my amputation, I was able to take up a place at Liverpool University to study medicine. This was the point when I decided that I would overcome cancer. Life suddenly became too good to miss out on, and spurred on by my fellow students I realised that the only way out was through.
My initial taste of Damocles was the fear of relapse from metastatic disease. Until this point I believed that my cancer was fatal. “The Big C” mentality of society had already stuck, and despite the months in hospital I do not recall anyone telling me that I could survive. Armed with several orthopaedic textbooks, I became an expert on osteosarcoma. I discovered that I had reasonable “odds.” Survival was not guaranteed, but at least it was an option. Instead of worrying about “lumps everywhere” I learnt about the likely sites of relapse, limiting my concerns to my lung and brain. The possibility of metastases loomed in my mind constantly. In order to cope with my anxiety, I set myself small goals to live for—Christmas; the medical ball; exams. Consequently the first and most crucial disease free anniversary came round much more quickly than I had expected.
My first anniversary was a black day, as the reality of cancer hit me again. Each subsequent year my fear reduced, and I began to hope that I would qualify as a doctor. I never set myself the goal of a total cure, imagining that this would tempt fate. Instead I planned in anniversaries and special occasions. There were many scares over the years. I became obsessed with checking for lumps and sinister symptoms. There was more than one 3 o’clock in the morning diagnosis of lymphoma or brain secondaries, leading to another round of negative investigations. I had always set myself a special goal of five year survival, and when the anniversary came round I threw a huge party to celebrate with plenty of champagne. The celebration marked a putting away of the fears of metastatic disease.
New anxieties about starting a family followed. Somewhere in the recesses of my mind I have memories of being told about infertility and teratogenicity after chemotherapy. Over the years I had come to accept that I would never have children, so I was delighted when I became pregnant. The pregnancy was beset with worries that my child would be born with serious congenital problems, and I experienced frequent nightmares. My healthy son was born on my 10th anniversary, which I felt was an appropriate time to discharge myself from formal follow up. Two miscarriages followed, which heightened my concerns, but during my fourth pregnancy frequent scans reassured me that my daughter was healthy.
The most recent fear to arise is the possibility of developing a second primary cancer. Memories of the chemotherapy and radiation I have received sometimes haunt me. When these fears occur, rationality and clinical acumen disappear, and I become a cancer patient trying desperately not to panic. My worries have not been brushed aside by my colleagues, who have acknowledged my need to be reassured.
I do not know how far Damocles made it through the banquet, but I think I am on the “coffee and mints” course now. I have glanced at the ceiling more times than I can remember, but I have enjoyed the tastes of survival. I have not got to this point on my own. My faith has helped me through the dark times, and the reassurance of family, friends, doctors, and colleagues has served to place a much needed safety net between me and that sword.