You Want Me to Do What?

“Are you someone who enjoys the unsolicited opinions of strangers and acquaintances? If so, I can’t recommend cancer highly enough. You won’t even have the first pathology report in your hands before the advice comes pouring in. Laugh and the world laughs with you; get cancer and the world can’t shut its trap,” wrote Caitlin Flanigan in her recent article for The Atlantic. 

If you’re a cancer patient then you’ll no doubt be able to empathize with the author’s lament on the subject of getting unsolicited advice. I know I’ve certainly felt high levels of frustration as people try to inform me how to live my life or deal with my disease. In some cases, the information we’re presented with is demonstrably inaccurate, scientifically unproven or even dangerous. After a decade of being offered personal as well as medical advice, caution and scepticism have become almost second nature to me. I inherently ask myself where is this information or recommendation coming from? Precisely who is telling me this, is the source an acknowledged expert in their field? Is what they are saying accurate, or could what they’re communicating contain a bias or a particular agenda?

Like most cancer patients I was particularly vulnerable in the months following my diagnosis. When my gynecologist gave me the results of my pathology report and said “it’s cancer,” I felt as if all that I knew and held certain about the world was suddenly obliterated or in doubt. Psychologists have observed that as human beings we tend to uphold something called the just world hypothesis or just world fallacy. We cling to the idea that the world is a fair and orderly place where what happens to people generally is what they deserve. In other words, bad things happen to bad people, and good things happen to good people. However, when an individual is diagnosed with cancer their sense of stability and belief in a just or fair world is often shaken— they can no longer rationalize much of what they thought was true. Some cancer patients become distressed, especially when they recognize that according to the just world hypothesis, they must somehow be responsible for their disease or deserve it. 

The truth I’ve come to accept is that I didn’t cause my cancer and I don’t have the ability to simply will it away. However, when my ovarian cancer was initially diagnosed, I was more desperate and naïve, more willing to imagine these things were still under my control. Looking back at the trauma I faced as a new patient, both my desperation and need for reassurance were justifiable. In 2012 I was hospitalized for over a month and a half at Calgary’s Foothills Medical Centre. The 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. 

Regrettably, some of the things that people either said or wrote to me during that time were highly inappropriate. Many of their suggestions worsened, or even exploited, my fear and vulnerability. In particular they reinforced the misconception that I could somehow control the course of the insidious disease that had invaded my body. On occasion this might have been due to malevolence, but I still believe the leading cause of people’s poor advice was ignorance.

I was recently reminded of some of the damaging words that were spoken to me by one member’s post in an online cancer support group. I nearly gasped in astonishment as, with a measure of composure, she conveyed the advice that she had just received from her oncologist. 

“He told me I needed to forget I ever had cancer, disassociate with all cancer friends or groups and eliminate thoughts of cancer and stress from my life to prevent recurrence,” she disclosed.

I was angry and astonished that such irrational advice had come from a cancer expert, an oncologist. What type of medical professional actually believes that cancer patients have the power to cause or prevent a recurrence simply by ruminating about their disease coming back or by not dwelling on it? This to the point of scolding patients for acknowledging their illness or the possibility it will someday recur. 

Of course, I don’t deny that a positive attitude and mental practices such as meditation can both play an important role in cancer recovery. Certainly, the mind is powerful and our attitude toward healing is important, but scientific evidence indicates that we cannot wish or ignore cancer away. 

The American Cancer Society and the National Center for Complementary and Integrative Health say there’s no evidence that meditation or support groups have a significant impact on survival rates. They can do all sorts of wonderful things, like reducing stress and allowing you to live in the moment instead of worrying about the next scan. However, there is no evidence that these methods will help you to achieve remission or slow the progression of the disease in your body.

Five Brutal Truths About Having Cancer

You will realize that life is often random or unfair.

Psychologists have observed that as human beings we tend to uphold something called the just world hypothesis or just world fallacy. We cling to the idea that the world is a fair and orderly place where what happens to people generally is what they deserve. In other words, bad things happen to bad people, and good things happen to good people. However, when an individual is diagnosed with cancer their sense of stability and belief in a just or fair world is often shaken— they can no longer rationalize much of what they thought was true. Some cancer patients become distressed, especially when they recognize that according to the just world hypothesis, they must somehow be responsible for their disease or deserve it. Many are forced to reassess their personal beliefs when it becomes clear to them that such an assumption isn’t valid.

Your closest relationships will be severely tested.

I’ve discovered that becoming ill with cancer has required me to analyze and redefine the relationships I once had, particularly with those closest to me. In many cases I’ve set new boundaries, as I will no longer tolerate toxic or unhealthy relationships. Some personal and business connections that I maintained before are finished, as a rule I’ve chosen not to stay in contact with people who were unable or unwilling to support me throughout my cancer journey. 

Most importantly, no one has the right to tell you how to respond emotionally to your cancer or to lecture you about how you should live your life after a diagnosis. Early in my cancer journey, I was confronted by a couple of individuals who insinuated that I should not allow cancer to change my life. How could I have not changed? I refuse to go back to the way I was before I had cancer. I see that as a complete waste of all that I’ve been through. 

You may be faced with financial hardship.

Financial toxicity doesn’t have an official definition. But generally speaking, it’s defined as a financial burden or hardship a patient experiences as a result of their cancer diagnosis. The financial hardship might be related to the diagnosis itself, the symptoms associated with it or the cost of the treatment and any associated health care that they’re receiving.

How a person’s cancer impacts them financially is influenced by many factors, where they live, their age and their marital status are issues that often come into play. Financial toxicity may look different depending on the patient and their situation. It may be something as straightforward as difficulty paying for medical visits, treatments or out-of-pocket expenditures, which can cause an individual to change the way they spend, borrow money or potentially delay or avoid care. 

Your overall health could be affected forever.

A large number of cancer survivors experience permanent changes to their body as a result of the disease or its aggressive treatments. The long-term impact of cancer can vary from relatively minor health problems to serious chronic health issues or disability. The most famous example I can think of is Terry Fox. In 1980, with one leg having been amputated due to osteosarcoma, Fox embarked on an east to west cross-Canada run to raise money and awareness for cancer research. Although the spread of his cancer eventually forced him to end his quest and ultimately cost him his life, his efforts resulted in a lasting, worldwide legacy. 

While I’m currently in remission, those dark days of surgery and chemotherapy have permanently changed my body. I’ve had to accept physical changes including the fact that my abdomen is severely scarred and that I have significantly less energy or vitality thanI did in the past. It’s also worth mentioning that, like Terry Fox and others, I’ve had to deal with disability. In my case I had substantial hearing loss prior to my cancer diagnosis, but the toxic chemotherapy drugs that were used robbed me of even more.

You will witness many other cancer patients die.

The most unbearable thing for me as a long-term ovarian cancer survivor has been knowing so many women with this insidious disease, it can be heartbreaking when I witness them gradually deteriorate or succumb to it. The famous American author and civil rights activist Audre Lorde received a diagnosis of breast cancer at the age of 44. While the prognosis isn’t usually as grim as for ovarian cancer, Lorde was still compelled to reflect on her mortality and the intimate connection she felt toward other women. “I carry tattooed upon my heart a list of names of women who did not survive, and there is always a space left for one more, my own,” she wrote.

I was diagnosed with the endometrioid type of ovarian cancer in November 2011, and as I approach the tenth anniversary of my survivorship, I too have amassed a list of names. The cruel fact is that each year about  3,100 Canadian women are newly diagnosed with ovarian cancer and an estimated 1,950 die from it.  In Canada, the five-year net survival for ovarian cancer is approximately 44 per cent. This statistic always makes me shudder, on average only about 44 per cent of the women who are diagnosed will survive for at least 5 years. I can only be grateful that I’ve become one of the fortunate few.

Cancer Diagnosis and Identity: Who are you?

One of the most significant mental health issues that I’ve recognized, both in myself and other cancer patients, is what the disease does to our self-identity. It’s as if we have to fight to remain ourselves after we are diagnosed with cancer. There are days when I feel caught in the middle of something. Although it’s true that ovarian cancer has substantially influenced my lifestyle, and to some extent how I view the world, it’s not all I am—I’ve struggled to make even those closest to me understand this paradox. It’s difficult to explain that while my self-identity is not entirely unchanged, I will always remain so much more than a cancer survivor or an oncology patient.

Regrettably, over the course of my journey, 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. For instance, one family friend became rather reclusive when she was informed that I was going through cancer treatment and behaved as if a cancer diagnosis might be contagious. She further assumed that all chemotherapy patients lose most of their hair and offered to loan me an old wig she had. But then, 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. It’s no wonder that some of us living with cancer still choose to avoid revealing our illness to anyone outside of our inner circle of family and close friends. We don’t want to be viewed differently—we just want to be normal, not defined by the disease. 

Of course, the health care system and the medical establishment are especially challenging—we are made to feel anonymous and are often reduced to nothing more than numbers or charts, it hurts that we are being robbed of our individualism. I was personally made to feel an acute lack of identity when some nurses and hospital workers didn’t call me by my correct or preferred name. Their error would stem from the fact that I’ve always been called by my middle name, and not my first like most people. I read a short poem recently that almost perfectly captures the feeling that I had on the cancer unit. Names by Wendy Cope describes a woman as she moves through life’s stages, the author deals with themes such as self-identity, ageing, illness and death. 

Names 

She was Eliza for a few weeks
When she was a baby –
Eliza Lily. Soon it changed to Lil.

Later she was Miss Steward in the baker’s shop
And then ‘my love’, ‘my darling’, Mother.

Widowed at thirty, she went back to work
As Mrs Hand. Her daughter grew up,
Married and gave birth.

Now she was Nanna. ‘Everybody
Calls me nanna,’ she would say to visitors.
And so they did – friends, tradesmen, the doctor.

In the geriatric ward
They used the patients’ Christian names.
‘Lil,’ we said, ‘or Nanna,’
But it wasn’t in her file
And for those last bewildered weeks
She was Eliza once again.

This poem becomes the heart-breaking reality for many cancer patients as we find ourselves navigating the hospital or other medical institutions. We feel ourselves diminished and our individual worth slipping away. As patients much of our privacy and control is essentially gone, on a hospital unit we must wake when we are told, wear what we are told and eat what we are told. Often, we don’t have the luxury of a private room, we must share a room with whomever, they say we have to. 

In his classic New York Times bestseller Being Mortal: Medicine and What Matters in the End, Atul Gawande examines identity and how it’s often diminished for residents of hospitals and nursing homes. The author, a medical doctor, uses case studies and also discusses the reality of chronic illness and ageing within his own family. Gawande writes that the battle of being mortal is the battle to maintain the integrity of one’s own life—to avoid being so diminished or dispirited or subjugated that who you are becomes disconnected from who you were or what you want to be. 

Similarly, Bonnie Annis, a breast cancer survivor and contributor to Cure magazine, recently wrote about the identity trap that we find ourselves in. “Just because a disease comes knocking on the door, does a life necessarily become drastically changed? Sometimes, perhaps, but not always,” she insists. “Taking time to hold tightly to identity can actually help with the ability to get through cancer. For example, if a person fails to remember how resilient she was before cancer, she may find herself struggling to keep her head above water when things get tough.”

Annis concludes that none of us escape cancer unscathed. It’s a life-changing and life-altering disease, but allowing it to become our identity is not an option. We’re all too precious and too different to live within the confines of the world of cancer. We can’t afford to give it the power to rob us of our identities.

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. 

Cancer Survivorship: Tips for the Long Haul

On November third I’ll mark the ninth anniversary of my cancer diagnosis, sometimes it feels like yesterday and other times I see it as a lifetime ago. So much has changed in the world since that afternoon when I was told that I had both uterine and ovarian cancer; I feel that in many ways I’ve become a completely different person. The “new normal” has become my reality, however there are still days when being a cancer survivor is difficult, terrifying or lonely. Here I’d like to share some of the strategies that have helped me through the long haul of cancer survivorship, it’s always a struggle even though my disease is currently in remission.

Remember how you found motivation when you started your cancer journey.

When you’re first diagnosed with cancer, you’ll definitely have moments when you sense that your world is spinning violently out of control. The fundamental paradox for me as I underwent surgery, hospitalization and chemotherapy was that I was often put in situations where I felt a sense of power. To my surprise, I witnessed myself exhibit exceptional courage and self-assurance. It was sometimes as if I was standing in life’s Category 5 hurricane and remaining steadfast and unbroken. I don’t aspire to be a legend like Terry Fox or to be anything resembling a saint or a cancer hero. But through those dark days I discovered inner qualities and personal strengths that I never appreciated or properly acknowledged in myself.

Advocate for your needs using assertiveness.

As a cancer survivor you should never stop being assertive when it comes to ensuring that your needs are met, be direct, non-aggressive and specific with your requests. As an ovarian cancer survivor, I understand that women living with this ruthless disease need love and support and we deserve to be treated with empathy and compassion. We shouldn’t have to endure abusive or toxic relationships, especially when it involves a spouse, caregiver or other family member. Of course, navigating the complex and overburdened health care system also requires patients and families to advocate for themselves—it can sometimes literally mean the difference between life and death. I so often felt ignored or regarded as a medical case number, that the occasions when I was treated with dignity or compassion are especially memorable to me. The best medical professionals still find time to connect with their patients, and they are genuinely concerned about what we are thinking and feeling.

Focus on what is essential in your life.

I’ve come to the conclusion that cancer itself doesn’t make us see what’s meaningful; we see it when our attention turns away from the small and trivial distractions that surround us. Taking life for granted has become our culturally-induced default mode — we are trained to overlook the essential. As a cancer survivor I’ve ultimately been freed from this monotonous, addictive cycle. For example, I’m grateful for the oncologists who oversaw my case, especially my surgeon. I remain in awe of the fact that they literally saved my life, I also remember the nurses who were with me 24/7 in the hospital. I established a bond with several of them when, life-threatening complications forced me to spend seven consecutive weeks on the cancer unit. Weeks in cancer time feel like years, even decades, but the magnificent oncology nursing team that I had somehow helped me pull through.

I’ve noticed that I can truly appreciate the arrival of spring after a long hard winter. The sense of renewal or rebirth that is associated with spring has been heightened for me now. I appreciate the small wonders like a pair of finches building a nest in our yard and the poppies that bloom in the garden each June. Each day that I’m cancer-free is like a gift. It’s a miracle each morning when I wake up and become conscious that my disease is in remission and that I’m lying in my own bed. I give a sigh of relief when I discover that I’m not in the hospital and there is no need to drive to the cancer centre for chemotherapy or a checkup.

Build your passion into your post-cancer life. 

Even after a cancer diagnosis upends your life and disrupts your usual routines, it’s important not to abandon your interests and hobbies or the things that you enjoy doing the most. I enjoy writing and I still do that as much as possible. 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. 

Connect with a mentor or support group.

There’s a familiar proverb that states that it takes a village to raise a child. I think that this can be modified to assert that it takes a village to properly support a cancer patient. When I was diagnosed with ovarian cancer nine years ago, I was suddenly faced with a whole new array of complex needs. It was sometimes necessary, or in my best interest, to accept the assistance of my family members or inner circle of friends. During treatment I also had access to social workers, psychologists, dieticians and other skilled professionals to provide support and guidance. Even this far into my cancer journey, I still belong to several online support groups for women with ovarian cancer and take part in fundraising events.

Cancer Communities Face the Challenges of 2020

Sometimes I find it easy to despair given current world events, including the ongoing global pandemic. This year has been especially stressful for cancer patients undergoing treatment, it has even been difficult for those of us who are in remission. There’s tremendous anxiety around the world as we witness the strain on cancer centres, major hospitals and just about every health care system. I like to remind myself of the resiliency being displayed by cancer communities as they carry on with hope and the determination to make it through this global crisis. I’m especially proud of the cancer organizations here in Canada. and in Calgary, the city where I live. 

Building During COVID-19

Despite the pandemic there is a much needed new cancer centre rising in Calgary. On my many visits to the current Tom Baker Centre, I was alarmed by the obviously overcrowded quarters. When it opened its doors in the 1980s, the Tom Baker Cancer Centre was spacious and featured state-of-the-art design. Flash forward thirty or forty years and the aging centre is crowded and serving a volume of patients that is well beyond the capacity that it was built for. 

After my first couple of appointments, I found it impossible not to notice how filled to capacity the Tom Baker Centre is. Like most patients, I was subjected to the overflowing parking lot, the busy chemotherapy beds and the often packed or standing room only waiting areas. 

Finally, in the fall of 2017 ground was officially broken for the new Calgary Cancer Centre. The facility is scheduled to open in 2023, it will have double the capacity to treat patients and feature ultramodern technology. I don’t know when or if my cancer will return, but I’ve been following the construction of the Calgary Cancer Centre—I’ve been watching throughout the pandemic with anticipation and hope for the future.

I captured this photograph from the Calgary Cancer Centre’s public webcam on the evening of May 26, 2020. I was awestruck by this beautiful image of the sun setting on the massive structure. 

The Walk Must Go On

Meanwhile, I’ve registered for Ovarian Cancer Canada’s largest annual fundraising event, the Ovarian Cancer Canada Walk of Hope. This year it’s become the  Virtual  Edition and will take place on Sunday, September 13. The Walk will certainly look different this year, but the community is focused on achieving our goal  and raising much needed funds to help women live fuller, better, longer lives. 

The pandemic does not change the simple fact that ovarian cancer research is significantly underfunded and that more has to be done to develop better treatments. Scientific progress in the field has been agonizingly slow, more than half of women who are diagnosed with ovarian cancer still die within five years. Like many who have battled the disease, I dream that perhaps one day soon there will be a test that can detect ovarian cancer in its early stages. The majority of women are currently diagnosed after the cancer has spread beyond their reproductive system. In the meantime, funds raised for research in the area of immunotherapy might give renewed hope to some of us—especially the thousands who are already living with ovarian cancer or facing a recurrence.

COVID-19 and Déjà Vu

There is much that all of us have experienced since the beginning of the COVID-19 pandemic that is shocking, unexpected, unpredictable, unknowable and new. Life like this for some people has become almost overwhelming because there is so much that hasn’t been felt before or seen. I think that ovarian cancer patients might have a unique advantage, we’re already familiar with this type of uncertainty. We suddenly find that we must try our best to live today while we do not know what tomorrow and the day after will bring.

Before I was diagnosed with cancer, I had no true sense of how precarious human existence is or of how uncertain my future had probably always been. Then, on November 3, 2011, I received a phone call from my gynecologist’s office, I was told that he wanted to see me in person immediately. With that meeting I learned that the course of my entire life could change in just a single day, all at once I was forced to acknowledge my own mortality and how fragile life is. 

Lately I’ve signed up for text messages from Alberta Health Services, each day there is a message designed to provide advice or some encouragement during this universally stressful and uncertain time. What I didn’t expect is how closely messages for people during a pandemic would echo the standard counselling that I was given throughout my cancer treatment. Here is some of the familiar advice that I’ve received over the past few weeks.

  • When bad things happen that we can’t control, we often focus on the things we can’t change. Focus on what you can control; what can you do to help yourself (or someone else) today?
  • Set goals for today, even if they are small. Goals should be SMART; Specific, Measurable, Achievable, Realistic and Timely.
  • Panic is extreme anxiety that creates tunnel vision and doesn’t solve problems. Take a minute, step back, and think.
  • A healthy body can set the stage for a healthy mind. Do your best to maintain a healthy diet and try to exercise.
  • If your best friend or loved one was having the same negative thought as you, what would you tell them? Try applying that to yourself.
  • Advocate for your needs using assertiveness. Assertiveness is being respectful to you and the other person. Be direct, non-aggressive, and highly specific with your request. 
  • Notice when you’re feeling sad, angry, lost or overwhelmed about life changes. Don’t push the feeling away—acknowledge these feelings and give yourself time to grieve.
  • Make sure each day involves some pleasure (example: take a bath, enjoy food, watch your favorite TV show, talk with a friend).
  • Practice “belly breathing” to reduce stress. Breathe deep into your abdomen. Watch your belly rise and fall.
  • Take a moment to notice how you feel right now. Don’t judge your emotions or try to change them. Just observe them and see how much your current stress levels are reduced.
  • Visualize yourself coping with current problems. See yourself facing these challenges. You have overcome challenges before.
  • Encourage yourself through tough times. Repeat statements like I can do this, this won’t last forever, I’m doing my best.
  • Acknowledge how strong you are to have made it here. You are important, you are brave, and you are resillent.

Cancer Patients in the Time of COVID-19

As a cancer survivor, I’m able to experience the growing global pandemic from a unique perspective. During these extraordinary times my thoughts are often with the ovarian cancer community and the women who I consider to be my teal sisters. I recognize that each of us in this community faces new challenges and I worry for my fellow survivors that I have met in person or online. Are they able to obtain the prescriptions and groceries they need? Are they getting to their treatments? Are they able to have appointments with their oncologists? How are they dealing with the anxiety of facing this terrible situation in an immunocompromised state? Are they exasperated or outraged when they hear reports of some people disregarding the directives given by government officials and health authorities, the unbelievably selfish individuals who are still refusing to stay home or practice social distancing? 

Naturally, as the world is being swallowed by a pandemic many health care systems are working at full capacity and some are courageously trying not to buckle under the strain. How do cancer patients or those struggling with other life-threatening conditions or illnesses get the care they need? Furthermore, the question about whether to continue immune system-suppressing cancer treatments during the Covid-19 pandemic appears to have no clear-cut answers. “Oncologists are in a very particular predicament right now,” says Dr. Siddhartha Mukherjee, a hematologist and oncologist at Columbia University Medical Center and Pulitzer Prize-winning author of The Emperor of All Maladies. “Because on the one hand, you don’t want to delay treatment, but you also don’t want to expose patients to risk.” 

Meanwhile, The American Society of Clinical Oncology (ASCO) has put out a series of general guidelines during this crisis. But the organization has also written that, “At this time, no specific recommendations can be made … for delay in therapy or choosing alternate therapy in the context of Covid-19 infection.” Consequently, in the United States and Canada, oncologists, nurses, care teams, and hospital administrators have been working hard to address each patient’s situation individually.

I like to believe that those of us in the cancer community might actually have some advantages during this terrible global pandemic. Under normal circumstances, oncologists give patients undergoing chemotherapy a list of recommendations that echo the advice we’ve all been hearing for weeks: wash your hands as often as possible, stay away from crowds, dine at home, don’t touch your face, don’t shake hands. For individuals with cancer, these behaviors are often already a way of life. Obviously, individuals living with cancer are used to uncertainty; in addition, we routinely practice social distancing during periods when we’re immunocompromised by chemotherapy drugs. We have become experts at depending on others to help us, spending lots of time alone and learning to use that time productively. Such experience can be useful to help us cope with the demands of protecting ourselves and others during the pandemic

Experts say that some of the psychological issues associated with the COVID-19 pandemic, are similar to the psychology of receiving a cancer diagnosis. There is much that all of us and each of us have already experienced in the past few weeks that is shocking, unexpected, unpredictable, unknowable, new; much that we have not felt before and not seen. Ovarian cancer patients are familiar with this type of uncertainty. We suddenly find that we must try our best to live today while we do not know what tomorrow and the day after will bring. Before I was diagnosed with cancer, I had no true sense of how precarious human existence is or of how uncertain my future had probably always been. Then, on November 3, 2011, I received a phone call from gynecologist’s office, he wanted to see me in person immediately. With that meeting I learned that the course of my entire life could change in just a single day, all at once I was forced to acknowledge my own mortality and how fragile life is. 

The Things That Are Not Okay

DOCTOR:  I am sorry this is the news I have to be telling you. 

ME:  It’s okay.

DOCTOR:  No, it’s not okay. Nothing about this conversation is okay. 

…in that sacred moment, this doctor gave me permission to be honest. That’s how I’ve been comfortable being so open about grief.

— Shannon Dingle


When you’re diagnosed with cancer there is sometimes a tendency to try to remain strong and stoic and to not complain or “burden” others with your illness. I think this predisposition might be more deep-seated in women because of the way we are socialized. Many of us will reply that things are okay or attempt to act like everything is alright in situations that are completely unacceptable. I’ve made a list of some unacceptable situations that are, in my opinion, not okay and they should not be painfully tolerated by people living with cancer or any other serious illness. I’ve made it my mission to call attention to these injustices—I try to call them out whenever possible. 

Spouses or Family Members Who Do Not Offer Support 

As an ovarian cancer survivor, I understand that women living with this ruthless disease need love and support and we deserve to be treated with empathy and compassion. We shouldn’t have to endure abusive or toxic relationships, especially when it involves a spouse, caregiver or other family member. Unfortunately, I’ve heard of women whose husbands or partners don’t support them emotionally through their cancer journey. Some spouses complain when a woman’s cancer treatment interferes with family holidays or social activities. A few will even have the audacity to grumble if their sick partner is unable to perform her regular domestic work or maintain certain household responsibilities. 

Medical Professionals Who Lack Compassion or Empathy

To me the best doctors take time to connect with their patients, and they genuinely care what we are thinking and feeling. During my hospitalizations, I was so often ignored or regarded as an insignificant number that the occasions when I was treated with dignity or compassion are especially memorable to me.  I will always retain one particular memory from during my months of rigorous cancer treatment.

It was in the middle of the night and I had already spent several grueling hours in the emergency room when I was finally sent to diagnostic imaging for a CT scan. The technician performing the scan was highly empathetic toward me. He immediately noticed that I appeared cold and nauseous, so he offered me a blanket as well as a small basin just in case I was sick. Next, he saw that my IV had been inserted poorly by someone in the ER and that it required redoing. However, instead of changing my IV before the scan, he explained that he didn’t want to put me through the unpleasant procedure right away. We ultimately used the imperfect IV line to administer the contrast solution for the scan and it held out until we were finished.

A Culture of Guilt or Shame Surrounding Cancer

I’m still inspired by the words of the late American sportscaster Stuart Scott. “When you die, it does not mean that you lose to cancer,” he said. “You beat cancer by how you live, why you live, and in the manner in which you live,” There’s a controversial, yet commonly held, view that a cancer diagnosis is a war or a battle that must be won. The problem with this philosophy is that it places 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 just weren’t strong enough to will it away.

Many healthy people 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. In my opinion, a person’s cancer outcome will depend almost exclusively on medical science. If someone’s cancer progresses, it’s a failure of the medical treatments that are currently available to them, plain and simple. I know plenty of women who’ve succumbed to ovarian cancer and they were among the bravest and most resolute people on Earth. Ultimately, they are no less survivors than those of us who are lucky enough to be “cured” or to enjoy decades of remission.

A Lack of Progress in the Treatment of Ovarian Cancer

According to the Canadian Cancer Society an estimated 3,000 Canadian women will be diagnosed with ovarian cancer in 2019. An estimated 1,900 will die from the disease. Mortality rates for ovarian cancer have declined only slightly in the forty years since the “War on Cancer” was declared. In Canada, the five-year net survival for ovarian cancer is approximately 44 per cent. This means that, on average, only about 44 per cent of women diagnosed with ovarian cancer will survive for at least 5 years.

The survival rate remains dismal compared with most other types of cancer, this is essentially because the majority of women aren’t diagnosed until the disease is advanced and has spread beyond their reproductive organs. There is no reliable screening test for ovarian cancer and the early symptoms are often quite vague. For years, women and families affected by ovarian cancer have advocated for greater government funding of research into this disease. The indisputable fact remains that knowledge about ovarian cancer is still not as developed as it is for many other cancers.

When Having Cancer Means a Fresh Start

Psychologists have observed that a cancer diagnosis is for most people a major life event, mentally we tend to divide our life into before and after we had cancer. For me it’s definitely been like that, in many ways I feel as if I was given a clean slate or a new beginning. First, becoming ill with cancer has required me to both analyze and redefine the relationships I have with those closest to me. In many cases I’ve had to set new boundaries, as I will no longer tolerate toxic or unhealthy relationships. Some personal and business relationships that I had before are finished, as a rule I no longer remain in contact with people who were unable or unwilling to support me throughout my cancer journey. 

Now that I’m a cancer survivor, I’ve become more sensitive to the characteristics of toxic people and how they mistreat others. I choose to avoid them whenever possible, meanwhile I set boundaries and keep my composure when I’m in situations in which I must associate with them. I recently came across a fairly accurate description of what it’s like to be in such a relationship, it can be a relative, a friend, your boss, or a work colleague. The harmful individual likely demonstrates at least some of the following characteristics:

  • 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 flawless 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 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.

Of course, evolving relationships are just one element of my new life as a cancer survivor, 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.

At first it was hard to adjust to my new normal as far as work and income are concerned, but now I often relish the freedom and the time I have to relax and enjoy other things. Of course, there are still periods when I’m extremely busy, I’ve been required to learn a great deal in recent years. It’s been said that going through a cancer diagnosis and then undergoing treatment is a learning experience equivalent to a university degree. I carry an abundance of knowledge regarding the Canadian health care system, cancer, and gynecological cancer in particular, gleaned from the terrible events that I have been through. 

Finally, the way I view myself and the world has changed enormously as well. I’ve learned by necessity how to live my life day by day, and sometimes even moment by moment.  I’m always mindful of the present and what it has to offer me, I’ve also noticed that I rarely use words like “someday” because I try to avoid talking about future plans in vague or uncertain terms. Most healthy 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.