For years, Damian used denial to help him cope with a leg amputation due to bone cancer, but when he hit rock bottom, he found he needed to confront the reality of all he had been through.
When I was 17, I was an athlete and a good student with an affinity for math and science. I wanted to become a mechanical engineer and my family was pinning their hopes for the future on me. Out of the blue, I developed a limp and some non-specific aches and pains in my left leg. I had had a massive growth spurt—I grew 18 inches in 2 years—and we assumed it was growing pains. It wasn’t severe, but it lasted a long time and even meant that I came down the stairs one leg at a time. I was getting worried and eventually my mum took me to the doctor.
I got an x-ray and they sent me right to the hospital. They admitted me there and then, but I still wasn’t alarmed. No one said anything about what it might be. They did a battery of tests over the next couple of weeks, then a bone biopsy. That is when I started to get a little nervous. Why was it taking so long to figure it out and what was going on?
One of the doctors mentioned chemotherapy, which I knew was a treatment for cancer. When I asked if I had cancer, she was very matter of fact. “Oh yes, I meant to tell you…” and just turned on her heels and left. I was traumatized after that. The nurses were a bit more helpful and comforting, but the communication was terrible.
Fifty Fifty
I had to wait a couple of weeks for the results of the biopsy, but it came back negative. They took another look at the slides and the x-ray and decided it was probably just a hairline fracture. I was relieved and they sent me home. But a couple of months later, the pain was worse, and my leg was even more swollen, so I went back to the hospital. This time, I saw an orthopedic specialist who took one look at the leg and said, “I don’t care what the biopsy said, you’ve got bone cancer.”
They started me on treatment—six rounds of a combination of cisplatin and doxorubicin. It was brutal. All around me were these kids being treated for leukemia and other cancers. I was the only one with bone cancer. I stopped asking where Dave was or what happened to John. They all died around me, so I drew back into myself. I didn’t want to make friends with any of the other kids in case they passed away, so I became very isolated. Even though the prognosis for someone with an aggressive cancer like mine was only 50/50, I had tremendous survivor guilt.
At the time, I thought only old people got cancer and assumed that I would die from it. I was in a cancer ward, full of old people, and literally watching people drop dead every day, which added to the scariness of the whole thing. It was not a question of if I was going to die from the cancer but when. I was quite scared, couldn’t sleep, and very confused by the whole thing. My mum would come visit just about every day, but she was only allowed 2 hours a day, so I was pretty much alone.
Gobsmacked
When I was done with chemo, I thought I would go home and get on with my life, but it turned out I had to have my leg amputated. No one came to discuss that with me beforehand either. One of the nurses just mentioned “Oh I see you are on the schedule for an amputation on Friday.” I mean, what the heck? How could they forget to discuss that with me? And the shock of having to deal with that as an athlete at age 17 was overwhelming. It was a real blow to my self-confidence to have to have a prosthetic leg up to my hip. I tried to deal with it the best I could, but I wasn’t offered any counseling of any kind.
My family didn’t really deal with it all when I got home. Their mentality was, we don’t talk about that. One day, I was having my tea, watching TV, and there was a show about Terry Fox, who like me had bone cancer. He got over it, learned to deal with his amputation, and was doing a run to raise awareness about it when the cancer came back. He died before he could complete his run, but I found it so interesting. Here was someone I could relate to. But my mum came in an turned it off. “We don’t need to dwell on that,” she said. I was gobsmacked.
Making Excuses
It felt as though no one would even acknowledge what I had been through, not even in my own family. I had a strained relationship with my older brother after my cancer too. He insisted that nothing had changed. “He’s still the same Damian,” he would say. But I had been through this horrendous thing and it was like no one would admit the amount of change and horror I had been through. No one recognized that I was not the same person, beyond the obvious disability. Even my dad, who I was looking to for reassurance, couldn’t seem to see me and what I needed. He never spent any time with me. He just couldn’t cope with it.
I have a very clear memory of being home, but in hospital bed because I still didn’t have my mobility back, and Mom came down one morning, crying. I was trying to console her saying, “If I die, don’t be worrying about me, I won’t be suffering any more. You don’t need to worry about it.” The idea that a 17-year-old would be consoling parent of his own death is just absurd. But they couldn’t cope, and I just started making excuses for them.
It absolutely ruined my sense of self. I was never very self-confident to begin with, but this destroyed my self-esteem. And I had lost a year of my life. All the good friends that were so supportive during treatment carried on with their lives, went off to university, but I had been left behind. I didn’t want to do anything that would expose my difference to my friends, so I didn’t really spend any time with other cancer survivors or amputees, but instead tried to isolate myself from them and live in denial.
Damaged Self-Esteem
Everyone thinks when treatment is done everything is fine and dandy. But it is so not true. Life had changed completely the day of the cancer diagnosis and would never be what it was. And life changed because I became disabled as well, which was a constant reminder of what happened. There are so many daily activities I can’t do the way I used to. At 19, I was so isolated, it left me with an insecurity and damage to my self-confidence and self-esteem that stayed with me a long time. It was a very traumatic experience that went on for a long time.
There were folks that were helpful. One of my dad’s sisters was a rock for me. She would visit every evening, while I was convalescing even though she had a big family of her own to take care of. And every time she came, I felt a sense of relief. She offered the guidance and nurturing that my parents couldn’t provide and was a confidant that I could speak to. Somehow, she always said the right thing, gave me the reassurance and support that was absent otherwise. She helped me through those times and was definitely one of the grownups in the room. I always felt things better when she was there. Even now when I think of her, I get that comfort feeling I got when she would walk in when in the middle of treatment.
Moving On
Eventually, I learned to walk again, got my driver’s license and got a job working in a biomedical lab as an apprentice. I was working four days a week and going to college on the fifth, eventually getting my degree. But I couldn’t really see any future for myself and had no real outlet where I could unburden, so had to carry it for myself. I just tried to crack on with life. I didn’t want to be left alone with these thoughts. So, I think I was trying to conform to what others expected of me, trying to be the same person. But, while not acknowledging publicly that anything had changed, on the inside I was thinking, “What the hell happened?”
Mostly my strength came from being innately stubborn. I was always one who would see it through, no matter what. The cancer and being disabled just made me more determined to win, not give in to it. I liked getting praise from other people, so I rose to the praise. I valued myself on others’ opinions, which is not a great way to be, but by nature I was determined. At one point when I was working in a histopathology lab, I found my own knee among the specimens in formaldehyde. They wouldn’t let me take it home though. I also found my old case records. That was very strange.
It was an interesting job, with lots of opportunities for growth, and I even met my wife there. Eventually I became the IT expert for the team and migrated into the IT department for the National Health Service and later worked in tech for a private contractor and even did some work in India. Makes you appreciate how much you have when you realize how little some people have.
Avoiding the Pain
But life fell apart at some point because hadn’t dealt with any of my emotions. About 6 years ago, I was working about 12 hours a day under very stressful conditions. Just having to wear a prosthetic for that many hours a day is hard. I was in a really bad place and couldn’t see any future for myself other than more pain and frustration.
The Pandora’s box cracked open and could no longer deny my emotions. I tried to kill myself, more than once. The first time, I was in so much pain, physically and psychologically that I just wanted to be numb. I was tired of it all and took all the valium I could find in the house. Another time, I disappeared from home for a week and my wife found me in a hostile trying to drink myself to death. My mum had just been diagnosed with ovarian cancer and I was having PTSD from even approaching the hospital to visit.
By the time of the third attempt, I was in a really dark place. I was having relationship difficulties at home, and work was not going well. I had a huge job with lots of stress – all of the accountability with none of the authority and no support. At times I felt my integrity was being compromised and it was just an impossible situation. It’s not that I wanted to die, but I just didn’t want to carry on with the emotions and the fear and the pain. I just wanted it to stop. So when my wife went to bed I went into the garage and shut the door and locked it and started the car. At the time, that seemed like an alluring option, to just go to sleep and all this will stop.
Opening Up
My wife found me and brought me to the hospital. I spent some time in-patient at the psychiatric unit and began to see what it was doing to my wife. I was causing her immense distress and came to understand how selfish I was being. Having suppressed PTSD for 30 years—I used to get flashbacks to the treatment as a kind of torture—I’ve slowly been rebuilding my life for the last six years. I took a sick leave from work and have been facing the anxiety and depression head on as I try to rebuild my life. It’s been 6 years and I hope to go back to work, but after initial breakdown, my resilience is still not great. When faced with stress, I still lose it a little bit, and the anxiety takes over again.
I’ve been trying to cope by doing things that help me, and to showing others that it is all right to be like this. Emotional health is still stigmatized, a sign of weakness. But, it has helped me to open up, after keeping it locked away for so many years. It feels better to not carry that burden inside anymore. I lost some friend over the past few years, long-term friends that ignored me when I was struggling or chastised me for trying to commit suicide rather than helping me. But I’ve made new friends too, friends that understand what it is like to have gone through cancer, to be an amputee. Now I have friends who share the same moral values.
Body Image Issues
I’ve had a lot of problems with body image. I was affected the treatment, not just physical appearance but mentally as well, and my self-confidence was shot. If someone took a picture of me wearing shorts, I couldn’t look at it, didn’t associate that with me. It was a complete rejection of what happened, that this was me now. When I was growing up, attitudes were very different than today, and people would just stop and stare at my prothesis. A lot of people have shame related to scars and amputations.
Now, I’m doing a fashion shoot wearing shorts and my prosthesis. I’ve come to accept that this is who I am. But processing the “new you” is hard. You can’t focus on what used to have. You need to process that, and it’s a grieving process, but once you let it go, it’s so much better. It’s been a revelation for me, made me a happier person. I got rid of the anger and bitterness and see my prothesis as a badge of honor. I am not going to let you or anybody else make me feel bad about that. Now I am proud of what I have been through.
Learning to Adapt
I try to capture the essence of what I have been through and help others that are different for whatever reason. You can be different and proud. It is only others’ narrow-mindedness that makes them not able to see that you are okay. People should give themselves credit for carrying on. I learned to adapt. I learned to fly, I drive a sports car, play wheelchair basketball and even got an adaptive electric bike to go trail riding. Feeling the wind blowing through your hair is pretty cool. You have to live your life every day.
I also learned that it helps to keep a positive mindset, to turn down the trauma and to try to enjoy yourself. When positive things happen, I am more humble, more appreciative. Stress and anxiety never change the outcome, so don’t worry about things you don’t know about yet. Of course, that’s easier to say than to do, but having a negative mindset makes the whole process much harder.
Now I encourage people to live in the moment, to be grounded, to take a moment to sit in a garden and look around. I’m busy making good memories and helping others. I’m now a Trustee to the Bone Cancer Research Trust and active in amputee support. When I see young guys just starting, I reassure that they can get through it. I give them the reassurance that I didn’t get and advise them on the mental health journey. It gives me a reason to get up in the morning.