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 and I try to correct them 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 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 fact remains that knowledge on 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 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 a relationship with a toxic person, 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.

A Unique Kind of Fear

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. That is why patients with gynecologic cancer, especially ovarian, are frequently warned not to Google their condition or research it online. Admittedly most of the information that is available on websites is general or focusses on worst case scenarios. Oncologists are eager to remind us that broad statistics don’t take into consideration an individual patient’s age or overall health. In many cases the data presented is likely to overlook a lot of specific variables. Even so, when I go online the numbers pertaining to ovarian cancer are enough to terrify me.

Devastating Statistics

Ovarian cancer is the eighth leading cause of cancer in women, according to the World Health Organization. Nearly 300,000 women worldwide will develop it this year. On a global scale their prospects are often bleak, it’s estimated that one in six will die within three months of diagnosis and fewer than half will be alive in five years.

Each year about  2,800 Canadian women are newly diagnosed with ovarian cancer and an estimated 1,800 die from it. Mortality rates for ovarian cancer have declined only slightly in the forty years since the “War on Cancer” was declared. Most other cancers have shown a much greater reduction in mortality.

Ovarian cancer survival rates remain much lower than breast cancer and other cancers that affect women. Five-year survival rates are commonly used to compare different cancers. 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 the women who are diagnosed with ovarian cancer will survive for at least 5 years.

Like a Loaded Gun

One woman with ovarian cancer compared the fear of recurrence to a person always having a loaded gun pressed against her back. You never know when they will pull the trigger, or even if they will, but every minute you are conscious of them being there. I find this metaphor quite powerful, you never know if or when your cancer will return and this uncertainty is something that you must accept as part of your everyday life. A cancer recurrence happens because some cancer cells were left behind and eventually grow and become apparent. The cancer may come back to the same place as the original tumor or to another place in the body. According to the Ovarian Cancer Research Alliance around 70 per cent of patients diagnosed with ovarian cancer will have a recurrence. However, one of the most important factors in determining an individual’s risk of recurrence is the stage of their cancer at diagnosis.

Patients diagnosed with stage I have a 10 per cent chance of recurrence.

Patients diagnosed with stage II have a 30 per cent chance of recurrence.

Patients diagnosed with stage III have a 70 to 90 per cent chance of recurrence

Patients diagnosed with stage IV have a 90 to 95 per cent chance of recurrence.

Recurrent ovarian cancer is treatable but rarely curable. Women with recurrent ovarian cancer may have to undergo another surgery. Many women with recurrent ovarian cancer receive chemotherapy for a prolonged period of time, sometimes continuously for the rest of their life.

Elly Mayday (1988-2019) continued her modelling career while undergoing treatment for ovarian cancer.

Braver Than I Thought

I’ve certainly learned that when you are diagnosed with cancer there are moments when you become overwhelmed and 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 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 that I never appreciated or properly acknowledged in myself. Subjected to the ultimate test, I’ve sometimes shocked myself with my enormous capacity to overcome adversity and to confront physical pain and suffering.

Cancer and This Uncertain Life

“In a way though, the certainty of death was easier than this uncertain life. The path forward would seem obvious if only I knew how many months or years I had left. Tell me three months, I’d spend time with family. Tell me one year, I’d have a plan (write the book). Give me 10 years, I’d get back to treating diseases. The pedestrian truth that you live one day at a time didn’t help. What was I supposed to do with that day?”

— Dr. Paul Kalanithi on living with stage IV lung cancer


Before I was diagnosed with cancer, I had no true sense of how precarious our existence is or of how uncertain my future had probably always been. Then, on November 3, 2011, I learned that the course of my entire life could change in just a single day. I’m at home recovering from hysterectomy surgery and awaiting the final results of my pathology report. At about 10:15 or 10:30 that morning the telephone rings and a quick glance at the call display confirms that it’s my gynecologist’s office. I’m still in my pajamas and resting in my favorite living room chair. What happens next is something that I will always associate with how completely fragile life is.

At first as I hold the receiver to my ear I try to remain composed, but in just a few seconds my heart is racing and I can hardly breathe. I’m consumed by a sense of dread so powerful that suddenly I’m watching myself in slow motion. I listen as in a calm voice a nurse informs me that my gynecologist would like to see me immediately, if possible he wants me to come to his office at five in the evening.. Prohibited from divulging any confidential information from my report, she ends our discussion by requesting that I bring a friend or family member with me. In just a matter of minutes my life has been thrown into turmoil and my cancer journey has begun.

dreamy-teal-aqua-blue-nature-trees-kathy-fornal

My first time inside Calgary’s Tom Baker Cancer Centre is on a cold, dark November morning. Since it’s my initial assessment, the team of oncologists has obviously chosen to schedule me early, before anyone else. As I enter I’m terrified, but I soon notice how quiet and peaceful everywhere in the building seems to me at such an early hour. For what feels like a long time, my mother and I are essentially the only ones sitting in the waiting room of the centre’s outpatient clinic. First, I’m required to have a detailed consultation. I speak with a nurse about my medical history, naturally there is an emphasis on any family history of cancer. We confirm that there is a slight history of breast cancer and colon cancer on my mom’s side, but no actual cases of uterine or ovarian cancer.

Next, I’m examined by one of the Baker Centre’s top pelvic cancer surgeons, Dr. Prafull Ghatage. Following the examination, we are assembled in one of the conference rooms with Dr. Ghatage and a team of other physicians. The seriousness of my situation begins to register as I look across the table at four of five white-coated medical professionals. Meanwhile, Dr. Ghatage explains that he wants to perform surgery as soon as possible. This news is suddenly too overwhelming, especially in a situation in which I’m still recovering from a total abdominal hysterectomy.

“I just had a hysterectomy and now I’m dying of cancer,” I tearfully blurt out.  “You’re not dying, I’ll inform you if you are dying,” a firm voice immediately responds. These rational words jolt me back to reality, and before I leave I sign a consent form for a laparotomy—a highly specialized oncology procedure in which abdominal organs are removed, biopsied or repaired and a definitive diagnosis can be made.

DSC_0023

The relentless waves of panic and the constant upheaval that I felt during that first harrowing  month have gradually receded, at least enough to make my existence bearable. But even now, after years in remission, the sometimes terrifying uncertainty of my everyday life has remained. Some people are able to cope with the fear and uncertainty in this world by embracing one particular religious faith, however I’ve discovered that I am not one of them. At first, I thought that religious people would have a particular psychological advantage in dealing with cancer, but I’ve learned that this notion isn’t always true.

Personally, I was raised in the Catholic faith but as an adult I have chosen not to attend church or practice the religion. Even without the many imposed traditions or the inherent sense of belonging, I have still been able to draw on spirituality to help me endure the life-shattering ordeal that I’ve been through. If you aren’t religious, it doesn’t mean that your cancer journey must be completely devoid of faith. I’ve nonetheless chosen to build a life on faith—faith in the power of good, faith in science, faith in healing, and faith in the possibility of miracles.

After a Cancer Diagnosis: Five Things You Need to Know

light nature sky sunset

Allow yourself time to grieve.

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.

terry-fox-determination

 

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.

The Road Ahead

As 2018 was drawing to a close, I was forced to confront an unexpected bump on the never-ending road that is my cancer journey. In October I went to my family physician with some symptoms that I feared might indicate a recurrence of my ovarian cancer. While she was reasonably certain that my cancer had not returned, she wanted to be safe and made some arrangements for me to see my principal oncologist. It had been nearly a year since my last appointment and I’d almost forgotten the prevailing stress and uncertainty associated with visits to the Tom Baker Centre. When I arrived my eyes scanned the building’s vintage 1980s interior, finally resting on the rows of chairs occupied by anxious patients.

Ultimately the resident who examined me was reassuring, she quickly explained that the medical team would like to order a CT scan as a precaution to rule out the possibility that my malignancy had returned. On a Thursday afternoon, just a few weeks before Christmas, my oncologist’s office phoned to inform me that my procedure had been scheduled. Three days later I was at the hospital checking into diagnostic imaging, it was as if I was walking back into a nightmare that I thought was over. As I positioned myself in the scanner, I prayed that I would soon be facing the culmination of The Great Recurrence Scare of 2018 and not confirmation that cancer had invaded my body for the second time. Rarely have I been so painfully uncertain about what a new year would bring me.

 

simulator

 

To cut to the chase, my test revealed no evidence for tumor recurrence or metastatic disease in my abdomen or pelvis. I’m still cancer free after six years! I’m filled with gratitude when I think of the women who aren’t as fortunate as I am, there are too many of my teal sisters who never achieve a complete remission from their ovarian cancer. Obviously, as I think ahead to how I want to spend 2019 I’m more determined than ever to make the most of each day and not squander the precious moments of life that have been granted to me.

One of my goals for 2019 is to live in the present and not spend an excessive amount of my time regretting the past or worrying about what will happen to me in the future. About six years ago, soon after I was diagnosed with cancer, I discovered 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. Kabat-Zinn describes mindfulness as follows:

“Mindfulness means paying attention in a particular way: on purpose, in the present moment, and non-judgmentally. This kind of attention nurtures greater awareness, clarity, and acceptance of the present-moment reality. It wakes us up to the fact that our lives unfold only in moments If we are not fully present for many of those moments, we may not only miss what is most valuable in our lives but also fail to realize the richness and the depth of our possibilities for growth and transformation.”

 

hope-hands

 

Whatever transpires this year, I promise to treat myself with kindness and compassion. I pledge to be less critical of myself and to focus more on why I am a special and worthwhile human being. I’ll attempt to concentrate on my positive qualities and the valuable contributions that I am able to make while I’m in this world. Kabat-Zinn stresses that we should nurture our sense of self-esteem and self-worth. At the same time, he acknowledges that many people need help or reminders that they are worthy and deserve to be loved.

“Perhaps we just need little reminders from time to time that we are already dignified, deserving, worthy. Sometimes we don’t feel that way because of the wounds and the scars we carry from the past or because of the uncertainty of the future. It is doubtful that we came to feel undeserving on our own. We were helped to feel unworthy. We were taught it in a thousand ways when we were little, and we learned our lessons.”

Are You Sure?

“Are you sure, sweetheart, that you want to be well?… Just so’s you’re sure, sweetheart, and ready to be healed, cause wholeness is no trifling matter. A lot of weight when you’re well.”

The Salt Eaters by Toni Cade Bambara

I recently came across this intriguing quote when I saw it posted by a friend on Facebook. The Salt Eaters, the novel from which the passage is taken, explores the narcissistic aspect of despair and the tremendous responsibility that comes with physical, spiritual, and mental well-being. As a cancer survivor, I can definitely relate to this topic. To me being in good health is a privilege, a gift that we have a responsibility to nurture. Considering issues such as the obligations of wellness, if someone with supernatural healing abilities offered me the opportunity to be in perfect health I sometimes wonder what I would do. Would I simply choose to go back to my life as it was before my cancer diagnosis?

The-Salt-EatersI’ve almost forgotten the me I was before I had cancer. It’s hard to remember how different I was before having my uterus and ovaries removed, before the surgery scars that now adorn my abdomen. There are some things that have remained the same, but there are also many aspects of my life that are different. As hard as I focus, I can’t really remember my old normal. Was there really a time when I had never been inside a cancer centre or had an appointment with an oncologist? I can only vaguely bring to mind a time when my days were not fine-tuned to accommodate the physical, psychological and emotional demands that come with being a cancer survivor. My disease has required me to change in both positive and negative ways, it has beyond a doubt transformed me.

The Salt Eaters is set in a small town in the Southern States. According to one synopsis, Velma Henry, a long-time civil rights activist and feminist, sits in a hospital gown on a stool listening to the musical voice of Minnie Ransom. Old Minnie is a healer; she heals people by contacting the points of physical or psychical pain in her patients and relieving them. Scars heal and wounds close in minutes under her touch. Velma requires Minnie’s help because she has just attempted to kill herself after becoming overwhelmed by the tedious fight for change that never comes. Her healing takes a long time, for the old mystic must first be convinced that Velma truly wants to be cured. Throughout the novel the two women are surrounded by tourists, doctors, and passers-by. They are in a clinic that focuses on traditional medicines of all kinds. The author describes the inner-healing process of Velma, the efforts of Minnie and the thoughts of people looking on or associated with the scene.

Chemotherapy-drip

Sometimes I wish a mystic healer like the fictional Minnie Ransom could transport me back to before I had cancer, but then I think that I’ve come too far and acquired too much. In the seven years since my cancer diagnosis, I’ve realized how fortunate I am. I’ve been reminded that often, in our worst challenges come valuable lessons. Through facing the terrible realities of my disease, I’ve learned to be more conscious of living in the moment. I’ve learned it’s all right to pause in our hyper-accelerated culture, I’m allowed to take a break when I’m feeling worn-out. My new normal has also taught me I don’t need material things to make me happy and that family and friends are to be treasured. But perhaps the most valuable lesson I’ve acquired so far during my cancer journey is that life is all too short.

Finally, many critics of The Salt Eaters like that the novel presents an alternative view of medicine and its relationship to pain. I’m intrigued with the author’s view that pain is not a symptom, but the problem itself. In the book healing comes from within the patient, guided by Minnie rather than through treatment from the outside. In today’s world it is also more relevant than ever that the novel situates illness in a socio-historical realm. Velma is sick because of racial and sexual injustice. Others in the novel are obsessed with nuclear waste, chemical leaks, lead pipes and their potential health hazards. Nearly forty years after The Salt Eaters was published scientific studies continue to demonstrate the various links between our external environment and our internal health.