No man’s land in the cancer's kingdom

It took me a long time to be able to say I was a cancer patient. I waited till my doctor finally pronounced me in remission. I had thought I’d want to celebrate throw a huge party with great food, finest wine could be find in Bangkok, and dancing to the first little sunshine. Strange enough, it didn’t feel anything like the endgame I had dreamed.

Now that I’m done with my treatment, on paper, I am better: I no longer have cancer, and with every passing day I’m getting stronger. The constant flood of doctor’s appointments, blood tests and lies, to hide my sickness, have trickled to a slow drip.

Off paper, I feel far from being healthy. My disease has left countless invisible imprints in its wake: infertility, skin problems, a thyroid condition, chronic fatigue and a weakened immune system that sent me to the emergency room several times. Then there are the demons of the after treatment depression and the fears of relapse.

At my last therapy the doctors and nurses congratulated me on being “done, Kha.” What they couldn’t know was that in some ways the hardest part of my cancer experience began once the cancer was gone.

Writing about all of this has not come easily to me. I know that I am one of the lucky ones, and I am deeply thankful to be alive. In writing about the problems I am facing now, I worry about sounding ungrateful, or worse yet, insensitive to my friends in the cancer community who may never go into remission and my friends who lost a loved one.

These fears color the unexpected challenges that emerge during life after cancer, and can overwhelm the need to talk about them. After all, I’m supposed to be better.

So why don’t I feel better?

While in treatment, I had been surrounded by the world’s best army: a brilliant medical team from the USA cooperating with the ones in Bangkok. All of them had worked tirelessly to keep me alive. The goal had been to cure the cancer. Now that I had survived the disease, I no longer had the cavalry running after me. But I have 18 months to one year till my body can function normally dealing with the side effects, trying to re-built my life, finding a job... Suddenly, I found myself standing dazed and alone in the rubble, wondering what had happened and where everyone had gone.

I’m struggling to figure out who I am? Will I ever feel normal again? And most daunting of all, how do I move forward with my life?

Since my last therapy, I’ve spent all my time searching for Sophiene B.C. (before cancer). I’ve looked for him all over Bangkok. Then take a long flight to Paris and ended up at La Goulette (Tunisia where I was born), but the more I look, the more I’m beginning to realize he no longer exists. There is no going back to my old life. The problem is I don’t know how to move forward either.

One of my doctor told me: “We like to think of the end of cancer treatment as the closing of a chapter, but what most people don’t realize is that the emotional struggle continues long after. Feelings of post-treatment depression and anxiety are amazingly normal. I would go so far as to say that if you don’t have them it’s a surprise.”

I’m not alone in feeling this way. A growing body of evidence suggests that cancer survivors continue to struggle with medical, financial, professional and psychosocial issues long after the end of their cancer treatment. For many, the experience provides a renewed sense of life and purpose, but the task of rebuilding your life after something as devastating as cancer can also be a deeply disorienting and destabilizing one.

A report last year by the American Cancer Society, in collaboration with the National Cancer Institute, estimates there are almost 14.5 million cancer survivors alive in the United States today, and that number will grow to almost 19 million by 2024. Although more and more Americans are surviving cancer thanks to early detection programs, new treatment regimens and awareness campaigns, much remains to be learned about the short- and long-term issues faced by survivors. With long-term survival comes a new challenge: how to keep cancer survivors healthy and emotionally stable after treatment ends. Sorry, I couldn’t find the same report for Thailand, but I’m sure the general tendency is very similar in most of countries.

I was reading an article of Xeni Jardin, a journalist who writes frequently of her experiences with breast cancer: “I have learned since the day of my diagnosis that cancer affects all of who we are. There was no aspect of my life that wasn’t torn apart as my body was literally torn apart. In my case, after my treatment ended, I experienced mental health issues that were more intense and more debilitating than I’d ever experienced before in my life.

This thing that we experience that is casually referred to as post-treatment depression is much more than just that. It has many facets: spiritual, psychological, social, medical and financial, among many other things.”

The medical system that saved my life is not able to help me to keep my life. I have developed a deep love and reverence for the oncologists and nurses, and I believe that these people really do understand that, in some ways, it never ends for us. But I also believe that collectively the system of care failed to prepare the after treatment crisis.

“Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick,” Susan Sontag famously wrote in “Illness as Metaphor.” But she doesn’t talk about this no man’s land that exists between the two kingdoms, inhabited by people like me who are neither sick nor well. It’s a journey into the wilderness of survivorship. This time I’m finding that there are no protocols or discharge instructions, no roadmaps or 12-step plans to guide me back to the kingdom of the well.

The road back is going to be my own.

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