Tag / cancer and emotional isolation

by Jacqueline Chartier

Cancer Guilt: Understanding the Misconceptions

Cancer isn’t our fault.

One of the most disturbing revelations for me after being diagnosed with cancer was the amount of guilt and blame there is surrounding the disease. We still live in a society that subtlety, or even openly, tells cancer patients that it’s our fault. Two years ago, before she was Alberta’s provincial leader, Premier Danielle Smith made a shocking comment in which she essentially blamed cancer patients for their condition.

Smith’s now infamous comment was made during a podcast with naturopathic doctor Dr. Christine Perkins. The two were discussing healthcare and their shared belief that there’s a need for both mainstream and naturopathic medicines.

“Once you’ve arrived and got stage four cancer and there’s radiation and surgery and chemotherapy, that is incredibly expensive intervention — not just for the system, but also expensive in the toll it takes on the body,” Smith reasoned. “But, when you think everything that built up before you got to stage four and that diagnosis, that’s completely within your control and there’s something you can do about that that is different.”

We aren’t simply on vacation or short-term sick leave.

Ordinarily healthy people tend to assume that having cancer or a serious chronic illness is comparable to a couple of weeks spent recovering—perhaps from a slight injury or minor surgical procedure. This attitude probably stems from genuine ignorance, far too many people don’t understand the impact that cancer and cancer treatment have on the human body. Still, it can be devastating when co-workers or relatives imply that you are lazy or enjoying a relaxing break. “Why aren’t you back at work yet? It must be nice to be able to stay home all the time.” 

We can’t just resume our lives as if nothing happened.

Some pundits seem to think that, once we regain some of our strength and physical health, we should put the fact that we had cancer behind us and simply carry on with life. While I’m currently in remission, those dark days of surgery and chemotherapy have permanently changed my body and affected my psyche. In addition to a fear of recurrence, I’ve had to accept physical changes. These transformations include the fact that my abdomen is severely scarred and that I have significantly less energy or vitality than I did prior to undergoing cancer treatment. It’s also worth mentioning that, like so many other cancer survivors, I’ve had to deal with disability. In my case, I had substantial hearing loss prior to my cancer, but the chemotherapy drugs that were used have spitefully robbed me of even more

We don’t need medical advice from non-experts.

When I was undergoing treatment, I can remember getting angry when people other than my cancer care team would try to give me medical information. “If I want information regarding cancer or cancer treatment, I’ll ask for it,” I thought. The many articles from newspapers, magazines or online publications that I received from people who had never personally had cancer were annoying. For the most part these pieces were irrelevant and unnecessary. Also friends and family should be careful when presenting teas, potions or homeopathic remedies to treat cancer. When some individuals gave me a gift basket with ginger and dandelion root, I didn’t bother to explain to them that these nutrients are specifically mentioned on a list oncologists give to their patients. Ginger and dandelion root do not combine well with many traditional chemotherapy drugs, and therefore I was told to refrain from using them during active treatment with Carboplatin and Taxol.

Our cancer journey doesn’t end once our treatment is over.

As a woman who has experienced gynaecological cancer, I’ve come to accept one commonly held view of cancer survivorship:

“Cancer survivorship begins at diagnosis and covers the physical, psychosocial, and economic issues of cancer, from diagnosis until the end of life.” 

First, I accept the all-encompassing notion that’s presented in this definition because cancer does impact every single aspect of a person’s life. In retrospect, I also believe that my survivorship began that moment in my gynecologist’s office when he told me the devastating details of my pathology report. 

Simply being diagnosed with cancer made me a survivor, from this perspective I didn’t have to wait until after I had completed a full year of treatment or until I was officially in remission. Before the surgeons at the Tom Baker Cancer Centre cut into my body, and before the first drop of chemotherapy solution ran ominously into my veins, I was already a survivor in the eyes of the cancer community. I appreciate now that I’ll always be part of this incredible, strong and resilient group.

by Jacqueline Chartier

What Cancer Patients Most Need to Hear

Looking back on my almost decade long journey as a cancer patient, I’ve come to recognize that there are certain validations and reassurances that I wish to receive. I’ve also discovered that there are some fundamental psychological and emotional needs that are common in people who are living with cancer. Here is a list of what I believe we long for from our friends, family and those closest to us 

We need you to reassure us that our cancer isn’t our fault.

It’s been well documented that many cancer survivors have feelings of shame or guilt, particularly around the notion that they may have played some part in causing their cancer. Moreover, people often subtly, or not so subtly, blame us for our disease. Friends, family members or strangers often do this unwittingly, in an attempt to rationalize a painful reality and to cope with it better themselves. 

There is a difference between taking responsibility for the consequences of our actions and feeling like we deserve to be blamed. It may be true in some cases that a patient’s lifestyle or health care choices increase the odds of getting cancer or contribute to cancer progression. No doubt in such circumstances changing certain behaviours may improve their health. However, allowing a cancer patient to absorb blame and feel shame will almost certainly make matters worse. Instead, it’s better if we do not let shame and guilt keep us from moving forward. Feelings of guilt should never stop a cancer patient form getting the support they need and deserve, or from living in a healthier way. 

One cancer survivor said in a Globe and Mail newspaper interview that he thought healthy people should never give cancer patients health advice. “There’s nothing worse than being sick and getting advice from the healthy, because it’s almost like insinuating you did something to make this happen to you,” he explained. I firmly agree with this statement, and I become extremely angry when someone who has never experienced cancer tells me how to live my life with the disease. I’ve decided shame and guilt are unnecessary burdens to carry. Indeed, from everything that’s known about the emotions and health, acceptance and forgiveness are what we need to cultivate and enhance healing, not self-condemnation and self-blame.

We need you to validate our emotions, especially the unpleasant ones.

In took a cancer diagnosis for me to finally realize how essential validation is for a person’s mental health, especially their self-esteem. To validate someone is to recognize or affirm their validity or worth or the worth of their feeling or opinions. To validate someone often means using both your words and actions to make them feel valued or worthwhile. 

You might want to begin by acknowledging that cancer can be a terrifying experience and a diagnosis of this disease is usually a turning point that will alter a person’s life forever. I hate when people try to deny this fact or minimize it by giving me false reassurance. The truth is I don’t know if I’m going to be fine, you don’t know I’m if going to be fine, even my oncologist doesn’t know for certain if I’m going to be fine. Instead, I feel comforted when people use phrases like “I believe in you.” or “I’m pulling for you.”

We need you to be specific when you offer us assistance. 

“Can I do anything to help you?” Your overall intentions for asking a cancer patient this question is likely noble and your heart is in the right place. However, the phrasing of this question is frequently too vague or broad. The person undergoing cancer treatment is probably too overwhelmed to think of something specific, furthermore they don’t want to feel like a burden. Instead, it’s recommended that you ask if you can perform some task in particular for the person. “May I pick up some groceries for you?” or “I’d like to make you dinner tomorrow night.” are good examples of things you might want to say. Even scheduling routine appointments is difficult for an individual facing surgery or chemotherapy, so it might also be fitting to take the initiative. Many of us facing cancer treatment would be delighted if you offered to make some telephone calls or send some e-mail messages.

We need you to acknowledge our losses. 

Sometimes I view my cancer diagnosis as a series of losses, for example I’ve been forced to abandon or reassess many of my long-term professional goals. I lost numerous clients when I was unable to work for approximately a year. By the time I had undergone several major surgeries and then struggled through chemotherapy treatment, I had realized how stressful, competitive and deadline oriented my field of freelance journalism can be. I had to make the decision to step back from the relentless demands of trying to do assignments all the time.

Allow us to cry, to feel numb, to be angry, or to feel however we’re feeling. These emotions hurt, but they are natural and normal. Grief is a person’s normal, healthy response to a loss. I’ve discovered firsthand that the loss that triggers grief isn’t always something physical. You can experience grief if you or a loved one are diagnosed with a major disease or face a serious illness. It’s common to grieve the future plans you had made, or the ways life will change. Remember there is no “right” way to grieve, everyone is different. Give us time to experience our loss in our own way. 

by Jacqueline Chartier

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?

susansontag2

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.

simulator

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.

by Jacqueline Chartier

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

loneliness

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.

loneliness bench

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.

loneliness-2

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