There is much that all of us have experienced since the beginning of the COVID-19 pandemic that is shocking, unexpected, unpredictable, unknowable, new. For some of us it’s 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.
Meanwhile, 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.
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.
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.
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 distance 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 all or some of the following behaviors:
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 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.
As we commence 2020, I perform a quick scan of traditional and online media, not surprisingly I discover an inundation of both year end and decade end reviews. Many would agree that the events of the past decade have been turbulent, sometimes even frightening. There’s some level of apprehension when we consider our planet and our civilization. In the past decade millions of people around the globe have been forced to flee from war, extreme poverty or the rise of radical factions and dictatorships. Science has presented irrefutable evidence that the world’s climate is in crisis and that fossil fuels and other human factors are mostly responsible. Meanwhile, technology, in the form of social media and smartphones, has forever altered the way we work and interact with one another.
For me, as an ovarian cancer survivor, the decade 2010-2019 had its own special events—complete with moments of revelation. Here I’ve created a summary of what I consider to be the most significant occurrences, both for myself and for the entire ovarian cancer community.
2010: Fear and Denial
As the decade began I was experiencing vague symptoms of ovarian cancer, however I remained largely unaware of how serious my situation was. When I look back now, I wasn’t listening to my own body as much as I should have been, I tried to ignore the whisper until it became a scream. Initially, I didn’t pursue my emerging health issues aggressively or communicate openly with my doctors. I expect it was fear and denial combined with ignorance.
2011: The Journey Begins
In 2011 an abdominal ultrasound revealed several abnormalities, including a mass on my right ovary—just as ominous was the fact that some of my symptoms (abdominal pain, lack of appetite, frequent urination) were becoming more severe. I foolishly tried to protest at first, but I ultimately consented to a complete hysterectomy as well as the removal of my right ovary. On November 3, 2011, I received the results of my surgical pathology report. As I went over the report with my gynecologist, it was the first time in my life that I had words almost literally spin before my eyes.
Adenocarcinoma of the endometrium
The uterine cavity is completely filled with light tan neoplasm.
Right ovary with synchronous endometrioid adenocarcinoma
2012: The Fight of My Life
Finding out you have cancer, I can personally attest, is a unique kind of fear, but I believe this feeling is heightened even more for women who learn that they have ovarian cancer. It’s among the most feared and deadly cancers, one that tends to inhabit our worst nightmares of the disease. Someone once said that you never know how strong you are or how brave you can be until you encounter a crisis and have no choice. In terms of serious illnesses, I had inhabited a world of almost complete innocence, hospitalization, surgery and chemotherapy were all terrifying firsts for me. But eventually, Calgary’s Tom Baker Cancer Centre, being a patient on the gynecologic oncology unit and regular cycles of Carboplatin with Taxol became part of my routine—they became agonizingly familiar to me as I fight for my life.
2013-2014: Picking Up the Pieces
My oncologists informed me that I was in remission and there was no evidence of cancer on any of my latest scans, however my journey was far from over. I would be required to have checkups twice a year at the cancer centre as they monitored my closely. If I didn’t experience a recurrence within five years, their plan was to ultimately discharge me back into the care of my family physician. Meanwhile, I tried pick up the pieces of my life as I came to terms with my new identity as a cancer survivor. In the fall of 2013, I participated in a major Canada-wide event the Ovarian Cancer Canada Walk of Hope. I felt less alone as I walked with hundreds of other advocates and mingled with other survivors.
2015-2016: The Emperor of All Maladies
This was the period when I started to think a great deal about the history of cancer, especially the many patients that had come before me and the pioneering oncologists. I developed a fascination with these topics while watching the PBS miniseries Cancer: The Emperor of All Maladies. The creators of this ground-breaking television documentary based their project on a Pulitzer Prize winning work of nonfiction by renowned oncologist Siddhartha Mukherjee. Both the PBS documentary and Mukherjee’s Pulitzer Prize winning volume have one overriding theme. They bring to light that our current generation’s experience with cancer represents only a momentary chapter in an epic battle spanning thousands of years.
2017: At Long Last
On my many visits to Calgary’s Tom Baker Cancer Centre, I was alarmed by the obviously overcrowded quarters. After my first couple of appointments, I found it impossible not to notice how filled to capacity the building is. I was subjected to the overflowing parking lot, the busy chemotherapy beds and the standing room only waiting areas. Finally, in the fall of 2017 ground was officially broken for the new Calgary Cancer Centre. The new facility is scheduled to open in 2023 and will have double the capacity to treat patients with state-of-the-art technology. As 2017 ended, I received the news that I had only dreamed of for so long. My oncologists were satisfied that after five years without a recurrence I no longer needed to see them, they told me my health could be managed once again by my family physician.
2018-2019: A Way Forward
I don’t know when or if my cancer will recur, but I’ve learned to accept that terrible uncertainty. All I can do is live in the moment and make the best of what I have now, I’ve become aware of how fortunate I am as I’ve watched so many other women struggle with incurable ovarian cancer or eventually succumb to this cruel and vicious disease. It was a major triumph for the Canadian ovarian cancer community in 2019 when the federal budget allocated 10 million dollars to ovarian cancer research.
I cheered on the efforts of Ovarian Cancer Canada as they relentlessly lobbied the federal government to invest the much needed 10 million. Numerous meetings with survivors on Parliament Hill finally helped persuade some key politicians that better funding is needed to save thousands of lives. “Today, the Government of Canada has taken steps to invest in needed research which will translate into scientific progress against this disease. This announcement makes an important commitment to women’s health and equity in health care – and it is a milestone made possible because of you,” wrote Ovarian Cancer Canada CEO, Elisabeth Baugh.
Like every Christmas since my cancer diagnosis, this one will be unlike the ones I celebrated before I became a cancer survivor, A major cancer diagnosis often causes you to view the world differently—things that once seemed enormously important during the Christmas season lose significance and become almost trivial. Personally, I’ve discovered that having elaborate decorations, expensive gifts or wearing designer winter fashions 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 at the forefront of my agenda and have an extremely high priority to me during the holidays.
Many cancer survivors will attest to the fact that there are times during the season when they are surrounded by people and still feel very alone. This type of emotional isolation occurs when you discover that you can no longer relate to people in the same way you did before. Things that were important to you in the past are no longer important to you, and your friends and family don’t understand why you have changed so much. I’ve noticed that the books I read, the movies or television that I watch and the activities that I like to participate in have all changed a fair amount since my cancer diagnosis, so have the topics that I prefer to discuss. This transformation has affected my personal relationships and how I feel about those closest to me.
Since my ovarian cancer diagnosis eight years ago, I’ve been required to think about my mortality. I’ve also had to tend to many practical matters that I didn’t anticipate that I’d have to deal with until I was much older. While everyone around me carries on with their lives, I’ve had to stop and reflect on some of the more profound questions that others have the luxury of ignoring. Individuals diagnosed with cancer suddenly find themselves contemplating existential questions. Why am I here? What is the purpose of my life? Who am I? These issues are brought to the forefront of your mind when facing a potentially deadly disease. During the holidays I sometimes feel frustrated because most things my friends and family care about seem fairly trivial to me now. For example, they got cut off in traffic on the way to one of their annual Christmas parties or the latest popular gadget for someone on their Christmas list is currently out of stock.
I still enjoy traditions like exchanging gifts, and most Christmases I’m able to partake in a delicious turkey dinner. However, it’s the small things that matter most as I savour each moment. Every year I make a Christmas list that I share with family members, but the items on my list are usually inexpensive things that are intended to make my daily life as a cancer survivor more pleasurable. The grand total is almost always less than two hundred dollars. It may sound trite, but I carry within my heart a list of things that can’t be bought or wrapped up in a box. If I wrote them down, my Christmas list would read like a combination of a bucket list and some of the hopes and dreams that I have for all women living with ovarian cancer.
Of course, the best Christmas gift that every current and future ovarian cancer patient could receive is a cure. But in the meantime, we need newer and better treatments as well as ways of preventing the disease or detecting it sooner. The survival rate for ovarian cancer 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 symptoms are often vague. One common misperception is that a Pap Test for cervical cancer can also detect the presence of ovarian cancer, it definitely cannot.
I strongly urge anyone who would like to make a difference in the fight against ovarian cancer to make a donation to research this holiday season. Fortunately, women whose lives have been affected by this terrible disease have a number of non-profit advocacy groups working diligently for us. For Canadian citizens or those residing in Canada I recommend donating to Ovarian Cancer Canada OCC. For American citizens or those living in the United States I recommend donating to the Ovarian Cancer Research Alliance OCRA.
Allow yourself to cry, to feel numb, to be angry, or to feel however you’re feeling. These emotions hurt, but they are natural and normal. Grief is a person’s normal, healthy response to a loss. Understandably, I grieved after my father died, however I was surprised to find myself experiencing similar feelings when I was diagnosed with ovarian cancer. I discovered firsthand that the loss that triggers grief isn’t always 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 yourself time to experience your loss in your own way. Also understand that during life’s most difficult times it’s important to make a commitment to take care of yourself emotionally, spiritually and physically.
Don’t let fear consume you.
Fear is one of my constant companions on this cancer journey, for over seven years now it has attempted to overcome me and prevent me from living the life that I want. Naturally, when I was first diagnosed with cancer and was undergoing months of treatment some extremely unsettling questions raced through my mind. 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. Practicing mindfulness helps me stay in the present moment and to accept that I can’t control certain outcomes. I’ve ultimately learned that faith can be an important factor in dealing with fear. I’m not religious, but like many I’ve chosen to build a life on faith—especially faith in the power of good to triumph over evil in this world.
It’s ultimately your cancer journey.
One thing that’s become evident to me as a cancer survivor is that we all respond to cancer differently. Our response depends primarily on our own personality and past life experiences. How we deal with a life-threatening illness will differ according to our personal values and may also be connected to how we have responded to crises in the past. It must be acknowledged that cancer is extremely personal, so our response tends to be personal as well. With these facts in mind, I argue that no one has the right to tell me how to react emotionally to my cancer or to lecture me about how I should live my life after a diagnosis. For example, early in my cancer journey I was confronted by a couple of individuals who insinuated that I should not allow my illness to change my life. How could I have not changed? I’m not going back to the way I was before I had cancer. I see that as a terrible waste of all that I have been through.
You never know how strong you are.
When you are diagnosed with cancer you will have moments when you sense that your world is spinning violently out of control. The fundamental paradox for me is that I’m often in situations where I feel a sense of power, combined with courage and self-assurance. It’s as if I’m standing in life’s Category 5 hurricane and remaining resolute, steadfast and unbroken. I certainly don’t aspire to become a legend like Terry Fox or to be anything resembling a saint or a cancer hero. But still, I’ve discovered inner qualities and personal strengths I never appreciated or properly acknowledged in myself. Subjected to the ultimate test, I’ve sometimes shocked myself with my capacity to overcome adversity and to confront physical pain and suffering.
Don’t be afraid to ask for help.
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 seven 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 inner circle of friends and family members. For example, my mom was my primary caregiver following each of my three major surgeries. She would also accompany me to and from my appointments at the Tom Baker Centre and remain with me when they administered chemotherapy. Today most cancer patients, including myself, have access to social workers, psychologists, dieticians and other skilled professionals. Treating the whole person and recognizing that each patient has unique issues and needs have become firmly entrenched and are part of the philosophy of cancer care.