The Problem with Cancer and the Warrior Ethic

I’ve been thinking a lot lately about the controversial, yet commonly held, notion that a cancer diagnosis is a war or a battle that must be won. Doesn’t this philosophy place the burden almost entirely on us patients? If we die or if our cancer ultimately recurs it’s because we didn’t think positively enough or we weren’t strong enough to will it away. I know of plenty of women who’ve succumbed to ovarian cancer and they were among the bravest and most resolute people on Earth. In my opinion, a person’s cancer outcome will depend almost exclusively on medical science. Of course, there are always certain unknown factors or variables—what we sometimes refer to as chance. I’ve learned to face the reality that much of what occurs in terms of my cancer is beyond my individual control, no matter how strong or determined I try to be.

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When I was first diagnosed, an iconic image associated with cancer kept going through my mind. I closed my eyes and I could see one of Canada’s most legendary and revered figures, Marathon of Hope runner Terry Fox. I can vividly remember Fox from the photographs and TV clips of my early adolescent years. He continues to represent a certain type of heroism to me, and his legacy offers proof that one person can change the world in the face of tremendous adversity. Nevertheless, it was beyond the young Fox’s control, that his cancer returned and he was forced to stop his Marathon of Hope. In the end, he received multiple chemotherapy treatments and even experimental interferon treatments; in spite of everything, the disease continued to spread. Terry Fox died on June 28, 1981, with his family by his side. My point is that even the heroes among us don’t have it within their power to simply will cancer away.

Well-known screenwriter and producer Josh Friedman was recently diagnosed with kidney cancer, he writes eloquently about the warrior mentality in a personal essay he authored for Time magazine. “Cancer doesn’t give a damn how tough you are,” he argues. “Cancer doesn’t care if you stared down the North Koreans like John McCain, or won the Tour De France like Lance Armstrong.”

Friedman is adamant that patients shouldn’t feel a burden to be brave or to be victorious in some kind of ongoing battle with their disease. “You don’t battle cancer. You don’t fight it. If cancer wants you it sneaks into your room at night and just takes you. It doesn’t care if you’re John Wayne or John McCain.”

“The tough guy narrative is seductive,”  Friedman reminds his readers. “It suggests we have control over our fate, that we can will cancer away. These are lies we tell ourselves. And for some patients that’s helpful. It gets them through the day. For them, it’s a useful tool. But courageousness is a standard that no sick person should feel like they have to meet.”

One popular theory that makes me especially angry is one that links specific personality types to an increased risk of getting cancer. “The Type C Connection: The Behavioral Links to Cancer and Your Health,” argues that the personality traits of some people make them more prone to cancer. Typically, “Type C” individuals are the antithesis of warriors: They are unassertive people-pleasers who repress their emotions.

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Modern researchers have largely debunked the idea that negative emotions heighten an individual’s susceptibility to developing cancer, or that maintaining a positive outlook can stave off cancer’s return or delay its progression. I agree with the majority of oncologists and cancer researchers who argue that there is no evidence to support the idea that personality can influence the growth of malignant cells. There is no cancer for which attitude can halt the progression of disease. Healthy people may think that if they are diagnosed with cancer they will be treated quickly and then all they’ll need to survive is a positive attitude and a fighting spirit. They are wrong.

A recent article in the Washington Post bore the straightforward headline: “It doesn’t take a warrior to beat cancer. It takes a treatment that works.” The author shares his opinion that people shouldn’t think that their cancer outcome is primarily in their hands. Whether a person returns to a life that is cancer-free will depend on so many things that are out of their control. It will depend on the type of cancer they have, how early it was caught, how quickly they get the treatment they need, how well their body responds to the treatment, how skilled their doctors are, how well oncologists understand their type of cancer, their underlying health, their genetic make up etc. It will also depend, in part, on how lucky they are.

The Etiquette of Cancer

I’ve been living with cancer for six years now, having been through three abdominal cancer surgeries, five rounds of chemotherapy as well as countless scans and procedures, I’ve become deeply aware of the “etiquette of cancer.” Or the lack thereof. Etiquette has everything to do with situation, context, timing, individuals and circumstances—cancer etiquette is the same. I can’t offer any concrete rules, only suggestions and advice about how to communicate when the subject you’re dealing with is cancer. Perhaps most importantly you should be authentic and true to your relationship. Essentially the person hasn’t changed and wants to be treated as you always have. He or she is still that special someone in your life, with cancer, for the time being.

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Respect the Person With Cancer’s Privacy

One important area of etiquette that was sometimes breached during my diagnosis and treatment was respect for my privacy as a cancer patient. Of course, I won’t name people specifically, but there were one or two family acquaintances who took it upon themselves to spread the news of my illness. Please don’t share cancer information unless you know you have permission from the individual. Don’t use telephone calls, emails, social media, newsletters or bulletins to comment about a person without their specific consent. This rule is especially important when it comes to something as intensely personal as one’s health or a cancer diagnosis.

 

Practice the “Ring Theory” of Kvetching

Recently a technique has gained attention for coping with a major life crisis, such as a serious illness.  It’s called the ring theory of kvetching, so named by the psychologist Susan Silk, writing in the LA Times in 2013. Silk drew on her experiences as a breast cancer patient. When she declined one colleague’s visit, pleading exhaustion, she was told, “This isn’t just about you.” “It’s not?” she wondered. “My breast cancer is not about me? It’s about you?” The main principle of the ring theory is that support, caring, comfort FLOWS IN. Kvetching, venting, complaining, requests for empathy, all of this only FLOWS OUT. The person or people with the illness, trauma, or other enormously challenging life situation — they get to complain outwardly to their first circle of support. The first circle of support does NOT vent — about the challenges, the loss of sleep, the emotional toll, etc. — to the person or people at the centre of the trauma.

 

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Don’t Offer Treatment Advice

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. In the months following my cancer diagnosis I was inundated with information and advice from my medical team. Consequently, the articles from newspapers, magazines or online publications that I received from other people were annoying. For the most part these pieces were irrelevant and unnecessary. Also 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 patients should refrain from using them during active treatment.

 

Don’t Minimize the Diagnosis

Don’t declare, “Oh, cancer’s no big deal. My mom has had that for 20 years and is doing fine.” Remember that I’m not your mom and that any cancer is a serious issue. Even skin cancer, bladder cancer and other “minor” malignancies kill people every day. They cause suffering. They cause organ removal and disfigurement and fear and shame. I hate when people try to deny this fact or to minimize it by giving me false reassurance or by saying that I’m going to fine. The truth is I don’t know I’m going to be fine, you don’t know I’m going to be fine, even my oncologist doesn’t know what my outcome will be. Instead, I feel comforted by phrases like “I believe in you.” or “I’m pulling for you.”

 

Don’t be Judgmental or Ask for a Health History

For many cancer patients there’s nothing worse than being sick and getting advice from the healthy, because it’s almost like insinuating we did something to make this happen to us. It may be true in some cases that our lifestyle or health care choices increase the odds of getting cancer or contribute to cancer progression. However, if you cause someone with cancer to absorb blame and feel shame it will almost certainly make matters worse. Shame and guilt are unnecessary burdens to carry. From everything that’s known about the emotions and health, acceptance and forgiveness are what cancer patients need to cultivate and enhance healing, not self-condemnation or self-blame.

10 Things I Wish I Had Done Before I Was Diagnosed With Cancer

I’m convinced that nothing can fully prepare a person for the impact of a cancer diagnosis, but there are still things that I wish I had done before cancer became a part of my life. As a five-year cancer survivor I now have the wisdom of hindsight, so I’ve chosen to share my definitive list of what I wish I had accomplished when I was still healthy.

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Have a Plan Regarding My Work and Income

It’s important to have a strategy in the event that you suddenly become unable to work due to illness or disability. Unfortunately I was unprepared and learned this lesson the hard way. If you’re a self-employed individual, such as a freelancer or independent contractor, you may be especially vulnerable if circumstances ever render you unable to work for the long-term.

Go Out and Experience New Things

When I was still in good health, I made too many excuses about why I couldn’t go out to events or experience new things. I’m basically an introvert and prefer to stay in, it’s for couples only, I can’t afford it, the transportation and commute are too much of a hassle were some of the issues I’d focus on when ruling out gatherings or events.

Be More Physically Active

I regret not going for long walks or spending more time outdoors in the years leading up to my cancer diagnosis. Science has essentially proven that people who are active have an advantage compared to those who don’t exercise. Active individuals tend to live longer, healthier lives than their sedentary counterparts.

Purchase a Disability Insurance Plan

This is something I really regret not taking care of and I strongly urge anyone without this type of insurance to look into a plan. The only alternative to private insurance if you suddenly become chronically ill or disabled is most often government assistance.

Listen to My Body

Ovarian cancer is sometimes called the “silent killer” because its symptoms are often subtle or mimic other less serious illnesses. It’s important to know what is normal for your body and to be alert to any changes that might indicate a problem. I wish I had been more in tune with my body and more persistent with my doctors.

Develop a Support Network

When I was diagnosed with cancer I quickly realized that my social support network is very small. Specifically, I’m single, come from a small family of origin and have few close friends. I understand that some of this isn’t under my control, but I definitely wish I had been more diligent about building a network when I was still healthy.

Pay More Attention to My Relationships

If you have conflicts in your family relationships or have simply drifted apart, I suggest you reach out to repair whatever damage might have occurred over the years. Once you are diagnosed with a chronic illness you suddenly comprehend the value of having strong bonds with family members, including your parents, spouse, siblings and children.

Be Prepared For People’s Reactions

When people learned of my cancer diagnosis their reactions sometimes caused me resentment, frustration or anger. They meant well, but I could have been more prepared for their sometimes inappropriate remarks and gestures. Many individuals are misinformed about the scientific facts surrounding cancer or don’t know how to properly reach out to a friend who has been diagnosed with the disease.

Catch Up on Things I’d Let Slide

We all have a tendency to procrastinate or push tasks and projects to the back burner. When I became ill I suddenly realized how many things were left undone and how many loose ends I should have tied up. If you have been meaning to buy some essential new pieces for your wardrobe, need new glasses or need to get your car or computer serviced, do it now!

Establish an Outlet For Anger and Grief

The universal emotions for nearly all cancer patients are anger and grief—intense anger that can border on rage and a grief that can feel like a bottomless well of despair. To maintain your emotional health you’ll need an outlet for these feelings. It might be a friend, therapist or support group, but it’s important to have someone that you can confide in without fear of judgment

 

Five-Year Survivor: On Reaching Another Cancer Milestone

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In just a few weeks I’ll face an emotional and bittersweet milestone, the fifth anniversary of my cancer diagnosis. Above all I’m grateful that I made it through the grueling medical treatments that I had in 2011 and 2012. There were moments when I felt so sick and physically weak from surgery or chemotherapy that I was afraid I might die. I thank God for my oncology team; they were always there and never stopped encouraging me. It turns out they were right to be optimistic about my prognosis, or at least to be confident that I could achieve remission. I’ve been in remission from ovarian cancer, a disease that many refer to as the silent killer of women, for four years now.

As my cancer anniversary approaches, I’ve been thinking a great deal about how much things have changed for me. 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.  Most of all, I’m aware of time and of the immeasurable value of each day that I’m alive. Here are some powerful meditations that I though I would share.

“I ask you to imagine that there is a bank account that credits your account each morning with $86,400. It carries over no balance from day to day. Every evening the bank deletes whatever part of the balance you failed to use during the day. What would you do? Draw out every cent, of course.

Each of us has such a bank, its name is time. Every morning, it credits you 86,400 seconds. Every night it writes off at a loss, whatever of this you failed to invest to a good purpose. It carries over no balance. It allows no overdraft. Each day it opens a new account for you. Each night it burns the remains of the day. If you fail to use the day’s deposits, the loss is yours.

There is no drawing against “tomorrow.” You must live in the present on today’s deposits. Invest it so as to get from it the utmost in happiness and health. The clock is running. Make the most of today.”

 — Marc Levy, French novelist

“It’s being here now that’s important. There’s no past and there’s no future. Time is a very misleading thing. All there is ever is the now. We can gain experience from the past, but we can’t relive it; and we can hope for the future, but we don’t know if there is one.”

― George Harrison

“You must live in the present, launch yourself on every wave, find your eternity in each moment. Fools stand on their island of opportunities and look toward another land. There is no other land; there is no other life but this.”

— Henry David Thoreau

 

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In the film Dead Poets Society Robin Williams plays an unconventional English teacher named John Keating. In one of the movie’s most memorable scenes the teacher stands with his students gazing at some vintage school portraits. As they view the photographs of previous generations, this is what Keating tells the group of young men in his class:

“They’re not that different from you, are they? Same haircuts. Full of hormones,  just like you. Invincible,  just like you feel. The world is their oyster. They believe they’re destined for great things,  just like many of you, their eyes are full of hope,  just like you. Did they wait until it was too late to make from their lives even one iota of what they were capable? Because, you see gentlemen, these boys are now fertilizing daffodils. But if you listen real close, you can hear them whisper their legacy to you. Go on, lean in. Listen, you hear it?   Carpe   hear it?   Carpe, carpe diem, seize the day boys, make your lives extraordinary.”

Hospitals: Are They Still Places for the Sick to Get Well?

I suppose I’m incredibly lucky, having never been admitted to a hospital as an overnight patient until a few years ago. Inevitably like many cancer survivors I’ve undergone an unhappy transformation, I’ve been transformed from a hospital newbie into an experienced pro. Now that I’ve completed active treatment for ovarian and uterine cancer, I can boast approximately 70 days of my life spent looking at the world from a hospital bed. It’s no wonder that I was almost brought to tears recently while reading an article by André Picard, the Globe and Mail’s public health reporter. Picard nailed it perfectly with his recent opinion piece Taking patient-centred health care from rhetoric to reality. Here is an excerpt:

“So, what do patients dislike about being in the health system – aside from being sick, of course? A number of things: the helplessness; the feeling of anonymity; the discontinuity of care; the rote and the repetition; being talked about and talked to, rather than talked with; the waiting; and the loneliness.”

This epitomizes my experience as a cancer patient in so many ways and it also hints at what I believe are the limitations of most Canadian hospitals.

 

What Hospitals Are Not

During my cancer surgeries I often felt an urgent need to leave the hospital and go home, I never felt relaxed or like I could take my time to heal. These days, it may be easier to define hospitals by what they are not. They are not places for the sick to get well, not unless healing takes place in the brief interval of time that makes the stay a compensated expense. My hospital treatment was primarily covered by Alberta’s universal health insurance, but I needed my personal Blue Cross insurance plan as well. Through it all I was aware that hospital beds in Alberta cost around $1000 per day and that those beds are in limited supply.

I watched as some short-term stay patients were relegated to the hallway due to the unavailability of rooms. It was a reminder of how drastically the situation for patients and their families has changed in the past couple of decades. Once hospitals were where you stayed when you were too sick to survive at home; now you go home anyway, cobbling together your own nursing services from friends, relatives and drop-in professionals.

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The Foothills Hospital in Calgary is one of Canada’s largest medical facilities.

 

Turn Down the Noise

Like overcrowding the noise level in most hospitals has grown considerably worse over the past several decades. Dr. Brian Goldman recently discussed this topic in a blog post titled Hospitals bring down ‘da noise. Since 1960, the average daytime noise level in hospitals has gone up 200 per cent. Over the same period, the noise level at night has gone up 400 per cent. The World Health Organization says that for optimal health, the noise level in a patient’s room should be no higher than 35 decibels during the day, and 30 decibels at night. That’s the level of quiet conversation. In spite of these guidelines a 2012 study by researchers at The Ottawa Hospital found that the noise level on one unit averaged 76 decibels, that’s the noise level of a vacuum cleaner.

My personal experience gives an even more graphic example. At one point I had the misfortune of being hospitalized during some construction on the gynecologic oncology unit. Many staff members were apologetic and upset by the constant racket that we all had to endure. There were times when it sounded like a jackhammer and the noise levels had to be over 100 decibels. I believe that these circumstances were detrimental to my health and curtailed my ability to rest or heal properly. Actually, several studies have confirmed that excessive noise or disturbed sleep affects the immune system and delays recovery from major surgery.

 

Hello My Name Is

The medical professionals that I’ve encountered have all been competent, but what is often lacking is a sense that I’m a unique human being and not just a numbered chart or an illness to be discussed. British doctor Kate Granger recently passed away from cancer, but before she died she drew global attention to the impersonal care that patients in hospitals often receive. When Granger entered the hospital, her greatest anguish came from the fact that she was not treated as a person, but as an object on which tasks were performed. “I just couldn’t believe the impersonal nature of care, and how people seemed to be hiding behind their anonymity,” she recalled. Dr. Granger noted that, when people introduced themselves, it was comforting and made her feel safer and more like a person than an illness.

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Dr. Kate Granger left an important legacy.

While facing her own terminal cancer, Granger launched a spontaneous “Hello my name is” campaign urging health professionals to introduce themselves to patients. More than 400,000 staffers with the National Health Service in England have embraced the philosophy, and there are offshoots in Australia, France, Germany, Italy, the United States and Canada. Meanwhile the campaign is still gaining momentum on social media, the hashtag #hellomynameis has been used more than one billion times.

 

 

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.

Lessons in Survivorship: The Wisdom of Cancer

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As I’ve mentioned before in this blog, self-assessment or the need to reprioritize your life is a virtually inevitable part of being a cancer survivor. This month marks the fourth anniversary of my diagnosis. My gynecologist informed me of my disease on November 3, 2011, and this will always remain one of the most significant days of my life. How can one explain such a profound and life-altering event to a person who has always been relatively healthy? Some psychologists and experts have observed that cancer patients divide their lives into two parts or that we are figuratively born twice.

Since the beginning of my cancer experience there have been moments of epiphany and numerous opportunities for personal reflection. I want to share a few of the survivorship lessons that I’ve come to terms with over the past four years. According to professionals in the cancer field, survivorship is living with and beyond cancer. Survivorship covers the physical, psychosocial, and economic issues of cancer, from diagnosis until the end of life. This is some of what I’ve learned so far.

If something isn’t going to matter or have any impact five years from now, I probably shouldn’t spend time worrying about the issue. Not until my diagnosis with cancer did I realize how much time I spend worrying about the future or regretting the past. I believe more than ever in the importance of focusing my attention on the present. I can live each moment only once, so why waste that precious moment in a state of self-induced stress or anxiety? As for the direction of my life, I’ve ultimately gained a clearer perspective about what my priorities are—I’m proud of my ability to concentrate on the values and relationships that I know are the most significant.

I tend to enjoy my own company more than I enjoy being in groups or socializing with other people. I’ve accepted that I’m an introvert and there’s nothing wrong with the way I am, it’s not necessary for me to apologize. I lament the fact that my personality type is so frequently misunderstood and that introversion is often confused with being shy. Shyness is the fear of negative judgment, and introversion is a preference for quiet, minimally stimulating environments. I become the most upset when I’m accused of disliking people in general and of lacking the skills to be an extrovert. The truth is that introverts comprise at least one quarter of the population and we continue to make our own unique contributions to society.

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It’s counterproductive to surround myself with people who don’t want to be with me or don’t value me. I’ve reached a point on my cancer journey where I find it’s no longer necessary to impress anyone. If they like me the way I am, that’s fine. If they don’t, it’s their loss.

I’ve definitely developed zero tolerance for having toxic people in my life.

Some Signs of a Toxic Person

Nothing you can say or do is good enough.
They comment on the smallest flaw or perceived imperfection.
They drag up your past and won’t allow you to grow or be different.
They act like they are fabulous and never make mistakes.
They leave you feeling guilty and ashamed of who you are.
They are critical, controlling and don’t think about your needs.
They leave you feeling beaten, wounded, battered bruised and torn.
They violate your boundaries and never respect no.
They don’t care about your feelings and they like to see you suffer.
It’s always about them and what they think and want and feel.

I rarely use the word someday and I try to avoid talking about future plans in vague or uncertain terms. Most people I know take the future for granted and think of it as something that will always be there for them. In 2012 I spent over a month and a half on Unit 42 at Calgary’s Foothills Hospital. This women’s cancer ward is predominately a place of bravery, triumph, heartbreak and tears. When I looked into some of the other patients’ eyes, I could see them begging for a future, and I understood that they would do almost anything for the gift of just a few more months in this world. As a cancer survivor I’ve discovered how precarious tomorrow really is and that you can’t always depend on someday.

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I’ve learned it’s not wrong to put my own needs first and that it’s essential to take care of myself physically and emotionally. After undergoing five cycles of chemotherapy and three cancer surgeries within eight months—I’m finally treating my body with the respect it deserves. We’re all pressured daily to move faster, do more, sleep less, earn more money and obtain that promotion. Within the cancer community, I hear the term “self-care” a lot. I don’t know if I’m fond of the expression, but it’s a concept I believe in strongly, I consider it particularly relevant for women with cancer. As women we are socially encouraged to give everyone else our time, energy and attention—but often feel conflicted or guilty when we stop long enough to take equally thoughtful care of ourselves.

How to Slay the Dragon: Fear, Anxiety and Cancer

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Fear is one of my constant companions on this cancer journey, for nearly four years now it has attempted to overcome me and prevent me from living the life I want. Naturally, when I was first diagnosed with ovarian cancer and saw my pathology report a series of unsettling questions raced through my mind. Consulting with a team of oncologists at Calgary’s Baker Centre only seemed to increase my anxiety over my condition. Will the recommended treatment be successful or will I die? Will undergoing another major surgery followed by chemotherapy be too agonizing and unbearable? Now that my oncologist has informed me that I’m in remission, it’s the fear of my cancer recurring that I have to cope with on a daily basis.

In this post I’d like to share several of the best techniques that I’ve discovered for cancer survivors to master their fear and not let it control them.

Remember That Your Journey is Unique

Most women with ovarian cancer have at least one relapse within five years of being diagnosed, but I frequently remind myself that this standard rate of recurrence won’t necessary happen to me. The reality is that medical science has established that all cancer patients are unique. What’s more, because cancer statistics are based on large samples of people, they cannot be used to predict exactly what will happen to a single individual. Everyone is different. Treatments and how people respond to treatment can differ greatly. I strongly suggest trying to follow these essential rules:

  1. Resist the temptation to compare the disease in your body to what is happening to other people, even in situations when the type or stage of cancer is highly similar.
  2. Don’t dwell on statistics or the possibility of recurrence.

Practice Mindfulness

I’ve discovered that one of the best ways to quiet my mind and focus my attention is a technique called mindfulness. Jon Kabat-Zinn pioneered using this method with cancer patients and other groups battling chronic pain or illness at the University of Massachusetts Medical School. Mindfulness is basically just a way of paying attention, a way of awakening our minds and being present in the here and now. With principles found in Buddhism, mindfulness teaches us to live moments in each day rather than focusing on what might lie ahead.

Acceptance and letting go are crucial components of mindfulness. A philosophy of mindfulness encourages us to come to terms with our life, even difficult experiences such as a cancer diagnosis. Acceptance means seeing things as they actually are in the present. Mindfulness doesn’t require that you have to like your situation—you don’t necessarily have to assume a passive attitude toward suffering or life’s unfairness. However, you must come to terms with things as they are and acknowledge them, whether it’s a diagnosis of cancer or the possibility of its recurrence in the future.

Appreciate the Joys of Nature

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It’s generally agreed that exposure to nature is extremely beneficial for people with cancer or other chronic illnesses, improving mood and easing anxiety, stress, and depression. Current research findings suggest that natural settings such as parks, wilderness areas, urban green spaces and gardens have the potential to improve both physical and mental health. Numerous health scholars claim that ecotherapy can promote wellness and healing. The practice is also known as green therapy, nature therapy, and earth-centered therapy.

Take Part in Exercise or Physical Activity

Studies have proven the benefits of exercise for cancer patients. Of course, vigorous physical activity might not be possible during treatment and you should always consult with your doctor before beginning an exercise program. It will take more effort to become active if you were accustomed to a sedentary lifestyle before your cancer diagnosis. Many people feel so excited about “getting healthy” that they try to do multiple things at once, and that’s a recipe for burnout. Try focusing on just one type of exercise first. Some research indicates that a behavior change is more likely to ensue when you’ve identified what you really want from it. You may be seeking better moods or stress relief, or maybe you just want to connect with a fellow cancer survivor or workout buddy—it doesn’t matter, as long as you know what your goals are.

Have at Least One Regular Hobby

Secret-Garden

There’s an emerging group of professionals who employ the arts to help people heal. The new field is called creative arts therapies, and it encompasses a wide range of modes of expression including art, dance/movement, drama, music and poetry. When cancer patients undertake these activities, whether individually or with the guidance of a creative art therapist, they stand to benefit psychologically and emotionally. Recently there’s been a trend toward simple or old-fashioned crafts and hobbies such as knitting. Some adults are even using colouring books to relax and reduce daily stress. This concept started several years ago with the publication of Johanna Basford’s Secret Garden. Her colouring book for adults has since been translated into 14 languages and has sold over one million copies.

In a League of Your Own: Why Every Cancer Patient is Different

I recently received some grim news regarding a close acquaintance with advanced breast cancer. After achieving about one year of remission, her doctors have informed her that her cancer has metastasized to her lungs. Apparently her current prognosis is extremely poor and oncologists have indicated that her disease is expected to progress to the terminal stage. I have to acknowledge that I have a certain degree of difficulty coping with circumstances such as this. Psychologically I accumulate unnecessary anxiety as I compare myself to other cancer patients. When I hear of bad outcomes, I keep asking myself if I’ll be next.

One of the psychological aspects of having ovarian cancer is fear of recurrence. Although I’ve been in remission for about two years now, I remain alarmed that when my cancer was diagnosed it was fairly advanced. The statistics reveal that recurrence rates are notoriously high for my type and stage of cancer. Throughout my personal cancer journey I’ve noticed that this fear of recurrence is heightened by another phenomenon, the tendency to compare my cancer to other people’s experience with the disease. For example, I’ll sometimes remind myself that if my disease follows the path that it does with most women I’ll encounter at least one recurrence within five years of my initial diagnosis.

Cancer Cells

There are few analogies that can accurately convey such feelings of dread to those who haven’t experienced them. Some cancer survivors have compared living with the disease to crossing a battlefield and watching your comrades die gruesomely while you dodge the bullets. Personally there have been moments when I’ve felt a sense of doom, it’s as if I’m a death row inmate, but with no certainty of when my execution will actually occur.

I have some extremely important advice to give to myself and to anyone else being treated for cancer.

1. Resist the temptation to compare the disease in your body to what is happening to other people fighting cancer, even if your condition seems highly similar.

2. Don’t dwell on statistics or the possibility of recurrence.

For instance, most women with ovarian cancer do have at least one relapse within five years of being diagnosed, but that standard rate of recurrence won’t necessary happen to me. The reality is that medical science has proven that all cancer patients are unique. What’s more, because cancer statistics are based on large groups of people, they cannot be used to predict exactly what will happen to you. Everyone is different. Treatments and how people respond to treatment can differ greatly. A well-known American cancer survivor, Joanna Montgomery, chronicles her experiences of treatment, motherhood and marriage in a personal blog called It’s Cancer, Baby. As Montgomery heavily underscored in one of her online articles, we are all individuals.

“The truth is that every single person’s cancer is different —even those diagnosed as the same type and stage —because that cancer exists in a unique human body unlike no other, with a unique life history and genealogy. I’ve met people with cancer of a lesser stage than mine who didn’t make it, while I’ve just as frequently met survivors who dealt with higher stages of cancer decades in the past and are still going strong. There’s no algorithm that will determine which of us will make it and which of us won’t. There are endless factors at play, and cancer is unpredictable and constantly morphing.”

The stress and anxiety generated from trying to predict what will happen to you or from scrutinizing other cancer patients might actually be detrimental to your health and the healing process. Medical science acknowledges a connection between our thoughts and emotions and certain physical aspects of healing, such as our immune system. The power of the mind-body connection has been widely accepted by mainstream medicine since the 1960s or 1970s. During those decades, a great deal of research in the field of biofeedback and self-regulation showed that human beings could learn to control many physiological functions. Even those ones that had previously been thought involuntary, such as heart rate and blood pressure, were found to be at least partially under our control. A number of pioneering studies drew on relaxation, meditation and yoga.

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The power we possess over own bodies and our personal health and the case for each of us being a unique biological organism was also established in a groundbreaking book entitled Mind as Healer, Mind as Slayer. In 1977, this book by Dr. Kenneth Pelletier helped to inspire widespread interest in mind-body interactions. Pelletier presents a variety of compelling evidence that the mind is a major participant in illness and that the mind can be a major factor in health as well. The majority of his case studies focused on serious chronic diseases, including heart disease and cancer.

So my recommendation if you are fighting cancer is to maintain faith in your body’s ability to heal itself. Even more importantly remember that your cancer journey is unlike anyone else’s and that your outcome may be radically different from those in similar medical circumstances. You are special, your body and spirit are both unique, so don’t assume you can predict the course your cancer will take simply by observing the disease in others.

A Matter of Trust

trust-broken

Even before my cancer diagnosis three years ago I understood that trust is one of the central features of the patient-physician relationship. Ideally when I come under a physician’s care I should trust in my doctor’s competency and in their commitment to me as a patient. When I undergo medical treatment I must also trust my physician or surgeon to put my welfare above his or her own self-interest. Ethically my physician should always place my needs above obligations to other groups and advocate for my welfare.

This bond of trust has played a dominant role throughout my cancer journey, especially when I’ve undergone major surgery or consented to treatments such as chemotherapy. I met my oncologist in November 2011 and I continue to trust in his medical expertise and sound judgment when it comes to treating my disease. I know he and other members of the team at the Tom Baker Cancer Centre have placed my best interests before anything else. Still I regret to say that there was a critical point during my cancer treatment when I began to have irrational doubts about my surgeon and his medical colleagues.

Doctor's Touch

Looking back, several factors were instrumental in causing me to temporality lose confidence in my surgeon. In the spring of 2012 complications arose due to my cancer treatments. Two previous surgeries had resulted in scarring and adhesion of my bowel and at the time the blockage was probably being exacerbated by the chemotherapy I was undergoing. I was terrified of what might happen and despondent about my situation when I ended up a patient on the genealogic oncology unit for the third time. I was admitted through the emergency department and I could sense that my situation was extremely serious or potentially life-threatening. Worst of all I was in a tremendously weakened physical condition and my psychological state could best be described as anxious and confused.

My trust in my surgeon began to deteriorate due to communication issues. While he is a highly skilled oncological surgeon, like many doctors he is not always strong when it comes to exercising interpersonal communication skills. He rarely spoke to me or came by my room—we never really had a conversation to reassure me or to discuss my condition in detail. Instead it was typically surgical residents completing their 7 a.m. rounds that I saw for a few minutes each morning. In about the second or third week of being confined to a hospital bed with orders not to consume food my fear and imagination began to run out of control. Was my surgeon really qualified and capable? Had he played any role in creating the serious complications I was now facing?

Meanwhile, some family members and other non-medically trained individuals only increased these suspicions and fears. They suggested that perhaps I should not trust my surgeon and that I should try to get another specialist to operate on my bowel blockage. As the scheduled date for my surgery approached I became virtually obsessed with how vulnerable I was and how I would be literally placing my life in my surgeon’s hands.

Surgical-Instruments

I had previously trusted my surgeon and thought of him as a conscientious and vigilant medical practitioner, now I had almost convinced myself that he might be the opposite. Was he a cowboy? As explained in Dr. Brian Goldman’s book The Secret Language of Doctors cowboy is a slang term to describe a surgeon who is excessively reckless or careless with patients. In the bestseller a cowboy is described as someone who rides by the seat of his pants. It’s someone who kind of does things quickly. They’re trying hurriedly to do everything in a somewhat haphazard fashion, hoping like hell it all comes together at the end. Cowboy is also used to refer to a surgeon who perhaps doesn’t have the best judgment—someone who operates first and asks questions later.

Of course there were moments when I had nagging doubts that I could endure another surgery, I had just been through two major operations. This had made me all too familiar with the overwhelming physical and emotional impact that abdominal cancer surgery has on a woman. In essence I agree with Dr. Goldman’s opinion regarding the consequences of surgery.

The thing I find many surgeons fail to appreciate is that an operation is a form of controlled violence on the patient. If surgeons thought about what they do to patients on a daily basis, I suspect many wouldn’t do it. Even the most successful surgery causes severe (albeit manageable) pain. For patients relieved of their condition, post-operative pain is bearable—but not so much when the surgery results in complications or worse.

Dr. Brian Goldman, The Secret Language of Doctors

Finally on June 18, 2012, I signed the appropriate documents and critical surgery was skillfully performed. When I awoke in the recovery room I sensed that my crisis was at last resolved. Although only half-conscious, I was filled with elation as they informed me that the procedure to correct my obstruction had been successful. The primary cause was established to be scar tissue from my previous operations and now my digestive system was expected to function normally again. Most of all, I was comforted and reassured by the fact that my ovarian cancer had not visibly metastasized to other organs in my body. After a long, tumultuous journey my fundamental trust in my surgeon had ultimately been restored.