One year ago I completed treatment for stage three breast cancer. When I left the hospital the day of my last dose of radiation, my sister rang to congratulate me on having got through what was an horrific nine months: multiple surgeries, chemotherapy, radiation, hospital stays and sickness. She asked if I was going to celebrate ... and I burst into tears. Just when I was expected to feel ecstatic, I felt lost and confused. Did I have cancer that morning when they strapped me into the radiation machine, and that afternoon I didn't? I'd been a cancer patient for close to a year. Who was I now?
It sounds counter-intuitive but I was more afraid at that moment than at any point since my diagnosis. Was I completely insane? When I spoke to my lovely and always patient oncologist, he said not. Indeed, what I was feeling was common.
It seems anxiety, even depression, often follow the heady days of treatment. This period, I would argue, is one of the most misunderstood stages of the cancer journey.
During treatment I was completely focused on fighting the disease. Surrounded by those whose job it was to help me take on the cancer, I was too busy being sick to think about dying. Now I'd see my doctors (all going well) only every three months and I was terrified. Having leaned heavily on my family and friends throughout the previous year, I was also self-conscious about sharing this new crisis with them. Surely they were tired of hearing about my physical aches and pains; how could I tell them the mental anguish had seemingly just begun?
There is no test to definitively establish the cancer is gone. There is a chance it will come back and, if it does, it could be in another part of my body. With stage three breast cancer, the probability of recurrence is about 50 per cent (depending on the source of the statistics and the type of cancer in question). We hope we've killed it all but there is no way to know for certain. So I watch, a penny spinning in the air. I try not to fixate on it but that's hard and I'm not alone. For many cancer patients "recurrence anxiety" is one of the most difficult parts of post-treatment life.
Sitting alongside this psychological challenge is the ongoing physical reality. This too can be hard for the people around me. They want the nightmare to be over, for everything to go back to "normal" and so do I, but there are multiple hurdles to clear. Cancer patients are really knocked around by the various procedures we've endured. Many of us cope with painful scaring, nerve damage, digestive problems, fatigue, lymphedema, even cognitive issues; all of which may go on for months, even years.
For some breast cancer patients there's also the significant impact of hormone therapy. HT is a good news and bad news scenario. It's good to know that because my cancer needs estrogen to grow, blocking its production may hamper the growth of any leftover cancer cells lurking in my body. The drug I now take inhibits my body's ability to produce estrogen and that's a very good thing. The bad news is there are significant side effects to the particular medication I'm on (the most serious being joint pain and stiffness) and I'll be taking the wee pill every day for five, maybe even 10, years.
My instincts tell me I should manage these things quietly, I don't want to sound pathetic, or worse, ungrateful for the second chance, but it's not that easy. The lingering pain and discomfort feeds fear and there's a smorgasbord of "symptoms" that torment me late at night. Is that nagging headache a brain tumour? Is my sore back liver cancer? Am I being paranoid or is that latest niggle a legitimate concern? When I discuss these things with my doctor he explains that I have to get used to a "new normal". I guess I'm just trying to get my head around exactly what that means.
With this in mind, I often find myself looking for an appropriate answer when friends or acquaintances ask, "How are you?" I suspect, because I look reasonably well, they're expecting me to say "fine, good, great, life is amazing" and in my heart I want to please them, but sometimes these words catch in my throat. I'm weirdly superstitious about saying all is well. I also know that if I reply, "I'm okay but my hips are really sore," some people will feel uncomfortable, even disappointed. Occasionally I sense their judgment: it's time I moved on, got over it, surely I should be feeling lucky to be alive.
The irony is I do feel lucky! It's just so damn confusing. I take solace in knowing these contradictory emotions are pretty standard, almost all of the cancer patients I've met have told me they've experienced something similar. Some specialists describe this period as post-cancer grief. I'm grieving my old self; the body I used to have, the good health I enjoyed, the person I used to be. Basically I'm grieving the life I knew before cancer changed everything.
A number of people have said to me "none of us knows exactly when we're going to die" and of course this is true. Most people, though, do have an intrinsic sense of their own immortality - it's what makes it possible for us to carry on our lives, unencumbered by the nagging fear of death. Most of us imagine that if the plane we were on was to crash, we would somehow survive. It's a coping mechanism, the "it can't happen to me" phenomena, and it's robust, maybe even necessary. But if you've had cancer, this little emotional crutch no longer works ... because it did happen.
Despite this, I never ask "why me?" Lying in a bed next to a 4-year-old with leukemia makes that question redundant. I do struggle to picture the world without me in it (egotistical, I know, but true). It's hard to imagine not being there to help my children with life's challenges or to celebrate their milestones - university graduation, marriage, babies.
When I plan for the future I get nervous, as if by taking life for granted I may jinx it. Like many cancer patients I don't like the word "survivor". At this stage, at least, it seems presumptive. Learning to live while worrying about dying is part of the "new normal".
Those who've been through it tell me that as time passes, things get a little easier. With each check-up, mammogram, or scan I'll be led to a place where, some years "out", with luck, I won't think about cancer every day. Just now that seems a long way off but I do believe that day will come, and for now, I embrace the moments that lead to it; the little things that distract me, the work that sustains me, the love that envelops me.