Exploring Cancer’s Realm

Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds duel citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.

— Susan Sontag

As a cancer survivor I often feel like I’m an outsider trying to fit into the world I once occupied, the world of the healthy and cancer free. My cancer diagnosis has caused me to view the world differently—for example many things that once seemed enormously important have lost significance and become almost trivial. I’ve discovered that physical attractiveness, material possessions and social status all matter less to me now. Not surprisingly, these things frequently seem to fade into irrelevance as I confront a life-threatening illness. The realm of cancer is teeming with complex, and sometimes even existential, topics. Healthy individuals are able to carry on with day-to-day trivialities, but I’ve had to stop in order to reflect on some of the deeper questions that others have the luxury of ignoring. Since being informed that I have cancer I’ve discovered that I can no longer defer life’s existential questions. Why am I here? What is the purpose of my life? Who am I?

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Susan Sontag was an American writer and commentator on modern culture. She published essays, novels, and short stories. Sontag explored society’s attitudes toward cancer in her work Illness as Metaphor.

Regrettably, I’ve learned that our society still has misperceptions about chronic illnesses, such as cancer, and that there is still indignity for those of us living with such conditions. This legacy isn’t surprising considering the profound fear, confusion and stigma surrounding cancer for centuries. Until relatively recently the word was hardly spoken in public or said out loud. In 1978 Susan Sontag wrote the classic, and still controversial work, Illness as Metaphor. A breast cancer patient herself when she was authoring the book, Sontag argues that the metaphors and myths surrounding certain illnesses add greatly to the suffering of patients and frequently inhibit them from seeking proper treatment. By demystifying the fantasies surrounding cancer, Sontag strives to show cancer for what it is—just a disease. Cancer, she argues, is not a curse, not a punishment, certainly not an embarrassment, and it is often highly curable if good treatment is followed.

It’s no wonder that some cancer patients still choose to avoid revealing their illness to others. Some don’t want to be viewed differently. They just want to be normal, not defined by the disease. Others may choose to stay silent to protect their privacy and emotional stability. When the news broke last month that musical legend David Bowie had died at the age of 69 after an 18-month battle with cancer, fans around the world expressed not just grief but shock. Despite more than five decades on the world stage, under the glare of a public spotlight, the rock-and-roll icon managed to keep his cancer journey a secret from fans and friends alike, sharing it only with a handful of people in his inner circle.

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Sometimes when people are diagnosed, they receive a lot of advice from friends, family members or others—virtually everyone has known someone with a form of the disease. Often the intentions are good, but the stories can be scary and frequently make a patient feel worse. When a sizeable network of people learned that I had been diagnosed with uterine and ovarian cancer, I received information that was both inappropriate and that increased my anxiety. I was inundated with everything from holistic remedies for cancer to stories about aunt so-and-so’s bowel cancer. Keeping a diagnosis a secret keeps these kinds of opinions away.

Ultimately when my cancer became common knowledge, there was another aspect that I found somewhat unsettling. The moment some neighbours and acquaintances learned about my illness, all of a sudden it wasn’t really about me. To a large extent their focus became trying to make sure that my mother, who was in the role of my caregiver, was okay. She had a reliable network that was concerned about her and that wanted to make certain that she wasn’t becoming too overwhelmed by the situation. I don’t resent the support that was provided to my mom, but at the time I remember being a little envious. It made me more keenly aware that I don’t possess a large number of close friends myself; it also became slightly harder for me to focus on my own emotional issues and needs.

It’s All So Trivial: Emotional Isolation and Cancer Patients

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In my introductory blog post, Survivorship 101, I defined the concept of cancer survivorship. Survivorship refers to the physical, psychological, social, and economic issues of living with cancer, from diagnosis until the end of life. In this post I would like to delve deeper into some of the social and psychological aspects of having cancer. For example, a major cancer diagnosis often causes you to view the world differently—things that once seemed enormously important may lose significance and become almost trivial. Personally, I’ve discovered that physical attractiveness, material possessions and social status all matter less to me now. These things frequently seem to fade into irrelevance as I confront a life-threatening illness. Meanwhile, my relationships with other people, discovering ways that I can make a difference in the world and learning more about the essence of who I am are currently at the forefront of my agenda and have an extremely high priority to me at the moment.

Like many people dealing with cancer I’ve sometimes felt isolated from those not going through a similar experience. Relatives, friends and acquaintances mean well, but they are unable to fully empathize or to understand certain aspects of what I am going through. Many cancer survivors will attest to the fact that there are times when they are surrounded by people and still feel very alone. This type of emotional isolation occurs when you discover that you can no longer relate to people in the same way you did before. Things that were important to you in the past are no longer important to you, and your friends and family don’t understand why you have changed so much. I’ve noticed that the books I read, the movies or television that I watch and the activities that I like to participate in have all changed a fair amount since my cancer diagnosis, so have the topics that I prefer to discuss. This transformation has affected my personal relationships and how I feel about those closest to me.

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According to the Alberta CancerBridges team, such deep-seated feelings of isolation have been well documented in the cancer care literature. There is even a term that has been created to describe this experience—it’s known as survivor loneliness. Last summer I watched a rare long-term survivor of ovarian cancer address the crowd at an Ovarian Cancer Canada fundraiser. I admire her ability to speak eloquently in public about her decade long struggle. Throughout her speech she had nothing but praise for her friends and family, I could sense that she is profoundly grateful for the unconditional love and support that they have given her over the years. But paradoxically, the former nurse also characterized her personal battle with cancer as a “long lonely journey.” Survivor loneliness can take many forms and occur for a number of reasons. It’s typically felt as a profound sense of isolation from the people around you. As one battles cancer, this sense of isolation can arise from a feeling that you are alone in your awareness of mortality.

Since my cancer diagnosis two years ago, I’ve been required to think about my mortality. I’ve also had to tend to many practical matters that I didn’t anticipate that I’d have to deal with until I was much older. While everyone around me carries on with their lives, I’ve had to stop and reflect on some of the deeper questions of life that others have the luxury of ignoring. Individuals diagnosed with cancer often find themselves contemplating existential questions. Why am I here? What is the purpose of my life? Who am I? These issues are brought to the forefront of your mind when facing a potentially deadly disease. Sometimes I feel frustrated by the fact that most things that my friends and family care about seem fairly trivial to me now. For example, they got cut off in traffic, they had a disagreement with a coworker or their favorite esthetics studio is getting ready to raise its prices.

Cancer experts and psychologists generally agree that the most effective way to combat isolation and survivor loneliness is to connect with other people who are undergoing a similar ordeal. There are numerous support groups and organizations throughout Canada specializing in the extremely complex social and emotional aspects of cancer.

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Cancer shakes your illusions of immortality. It robs you of the sense of invincibility and innocence that once protected you. But what replaces that feeling is infinitely more valuable: a new awareness and a mature understanding of both life and death.

From Picking Up the Pieces: Moving Forward After Surviving Cancer
by Sherri Magee and Kathy Scalzo