Cancer Patients: Tackling the Privacy Dilemma

As a patient I know that there are laws in place to protect my medical records and the confidential nature of my consultations with my doctor. However, there is much less to protect my privacy in other situations. For example, if information I may not want to become public knowledge comes to be revealed through other individuals who are not part of my medical team. When undergoing cancer treatment, it’s usually necessary for us to share sensitive or highly personal medical information with members of our family, we also may need to share news with our social network or work colleagues. 

I realize now, nine years after my cancer diagnosis, that it was truly up to me what I wanted to say about my medical condition and what I wanted other people to know. There have certainly been times when I should have been more careful with what I revealed or chosen more carefully who I confided in. Much to my chagrin, one matter of etiquette that was breached during my diagnosis and treatment was respect for my privacy as a cancer patient. Of course, I won’t name people specifically, but there were a couple of family acquaintances who took it upon themselves to spread the news of my illness. Please don’t share cancer information unless you know you have permission from the individual. Don’t use telephone calls, emails, social media, newsletters or bulletins to comment about a person without their specific consent. This rule is especially important when it comes to something as intensely personal as one’s health or a cancer diagnosis.

Regrettably, I’ve learned that our society still has misperceptions about chronic illnesses, such as cancer, and that there is still indignity for those of us living with such conditions. This legacy isn’t surprising considering the profound fear, confusion and stigma surrounding cancer for centuries. Until relatively recently the word was hardly spoken in public or said out loud. In 1978 Susan Sontag wrote the classic, and still controversial work, Illness as Metaphor. A breast cancer patient herself when she was authoring the book, Sontag argues that the metaphors and myths surrounding certain illnesses add greatly to the suffering of patients and frequently inhibit them from seeking proper treatment. By demystifying the fantasies surrounding cancer, Sontag strives to show cancer for what it is—just a disease. Cancer, she argues, is not a curse, not a punishment, certainly not an embarrassment, and it is often highly curable if appropriate treatment is followed.

It’s no wonder that some cancer patients still choose to avoid revealing their illness to others. Some don’t want to be viewed differently. They just want to be normal, not defined by the disease. Others may choose to stay silent to protect their privacy and emotional stability. When the news broke that musical legend David Bowie had died at the age of 69 after an 18-month battle with cancer, fans around the world expressed not just grief but shock. Despite decades on the world stage, under the glare of a public spotlight, the rock-and-roll icon managed to keep his cancer journey a secret from fans and friends alike, sharing his medical condition only with a handful of people in his inner circle.

It’s one thing to grieve a long life lived and a promise fulfilled. It is quite another to be shaken by a life cut short. Just recently many of us were shocked once again by the news that the actor Chadwick Boseman had died at the age of 43 from colon cancer. Boseman was diagnosed with stage III colon cancer in 2016, and battled with it these last 4 years as it progressed to stage IV. He never spoke publicly about his cancer diagnosis, and according to The Hollywood Reporter, “Only a handful of non-family members knew that Boseman was sick… with varying degrees of knowledge about the severity of his condition.” During treatment, involving multiple surgeries and chemotherapy, he continued to work and completed production for several films, Boseman died at his home as a result of complications related to colon cancer on August 28, 2020, with his wife and family by his side.

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 Disruption: Slipping Through the Cracks

One of my greatest fears is that I will get a recurrence of my ovarian cancer as an unprecedented global pandemic continues to inundate hospitals and limit medical services. COVID-19 has really made a mess of healthcare across the board—not just in Canada and the United States, but for the entire world. Elective surgeries have been cancelled, meanwhile family doctors and oncologists are only seeing their most urgent patients. To minimize the risk of infection, cancer clinics and family practices are using virtual appointments whenever possible.

Perhaps the most distressing thing to me is that cancer treatment has lost its sense of predictability and continuity. The way doctors and health care teams are treating cancer continues to change day by day as the coronavirus pandemic unfolds. Because this is wholly uncharted territory and protocols don’t exist, surgeons are considering data from previous studies to guide their treatment decisions. 

For example, in some cases this means changing the order of treatment and administering cancer medicines before surgery. Ovarian cancer is typically treated with surgery first, but since elective surgeries are on hold at many hospitals, some oncologists are choosing to start patients on chemotherapy. “We’re fortunate to know from prior research that the order of those doesn’t matter, that the outcomes are similar even if a patient starts with chemotherapy,” one prominent oncologist explained.

Chemotherapy, though, poses its own set of risks and challenges because it can compromise a patient’s immune system. During the COVID-19 pandemic cancer specialists have to be very thoughtful and careful about the type of chemotherapy they recommend. Fortunately, in most cases there are various treatment regimens that may decrease the risk of immune suppression, and oncologists can also alter the chemotherapy doses as they deal with an unprecedented situation.

According to leading oncologists, the easiest patients to handle at this point are those who are in remission and are just being watched. In those cases, patients connect through teleconferencing, which allows doctors to get a sense of a patients’ general well-being, to interact, and discuss how they’re doing. While this approach eliminates the risk of infection, the majority of cancer patients argue that virtual appointments are not the same as having a doctor who can see you in person, actually measure your temperature, and actually feel any lumps or bumps that you may be experiencing.

The next group, which faces more challenges, is chemotherapy patients. Doctors say people on chemotherapy are the ones that they are the most worried about, because they know the patients have cancer and they know that the window to treat that cancer is fairly limited. Personally, I am extremely grateful that I’m not among the thousands of women with ovarian cancer undergoing active treatment. At most cancer centres patients are still getting chemotherapy, but their oncologists are having them essentially go right from their home to the lab to the chemotherapy suite to avoid coming into contact with as many people as possible.

This routine is very stressful for patients and their caregivers because at most centres social distancing measures are in place that prohibit friends or family members from being in the treatment area. Rules can change almost weekly or with very little notice.  Leading cancer centres acknowledge that their protocols will continue to be adapted throughout the pandemic as circumstances change.

Newly diagnosed patients who may require surgery are another major concern for oncology teams. One oncologist said that the most challenging are the diagnoses where someone comes in with findings that are suggestive of ovarian cancer, but unconfirmed. Sometimes a benign tumor can appear quite abnormal on a scan, and can look quite like cancer. The oncologists have to decide about whether they should bring that person to surgery. Obviously, the operating room is another area where patients are compromised or at risk. Furthermore, surgical procedures require a ventilator, which means the hospital is short one ventilator for another individual who may need it.

These are very tough decisions for doctors. They want to make sure that they’re not putting off the actual ovarian cancer patients a lot more than necessary, but they’re also not taking every single mass that probably is benign to the operating room. And while there’s some notion that specialists can just say, “that’s probably the right call, or that’s probably wrong” … it’s a much trickier discussion. Sometimes I ask myself if what cancer surgeons or decision makers are being forced into doing is gambling with somebody’s health and, potentially, with their life.

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. 

My Decade in Review

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 would become agonizingly familiar to me as I fought 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.

Posing with my mom and brother Ray at the 2013 Ovarian Cancer Canada Walk of Hope.

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 who set the stage for today’s advanced treatments. 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.

An artist’s depiction of the new Calgary Cancer Centre.

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.

That year 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.

A Teal Christmas

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.

Happy Holidays!

If These Walls Could Talk

Women in southern Alberta who are diagnosed with gynecologic cancer become patients at the Tom Baker Cancer Centre and are treated by the gynecologic oncologists there. However, when surgery is required we become patients on Unit 42 B, located in the adjacent Foothills Hospital building. I first enter the unit like almost all of us do, I’m wheeled in on a gurney following major abdominal surgery that has just been performed by one of western Canada’s top pelvic cancer surgeons. It’s the evening of December 13, 2011, and I can vaguely remember being transferred to a bed in a darkened room, beside me is one other patient. Outside the sun has already disappeared, and as I drift in and out of consciousness I visualize the rush hour traffic—thousands of people racing home for dinner, perhaps some rushing to the nearest mall for yet another round of Christmas shopping.

The first night I struggle with some post-operative vertigo and I can hardly focus each time I open my eyes. The room gradually stops spinning as the dawn approaches, meanwhile morphine dulls my pain and I reach down once or twice to feel a large compression bandage covering my abdomen. At first, I mistake the female resident who comes to examine me on rounds in the morning for one of the nurses. I don’t yet realize that residents do most of the rounds on the Foothills cancer wards and report back to the oncologists and surgeons. The other morning routine that soon becomes engrained in me is having my blood drawn, the hospital lab technicians regularly make their rounds of the unit at five or six in the morning. 

So, what is the worst thing about being on Unit 42 –aside from being sick or having cancer of course? A number of things: the helplessness; the feeling of anonymity; the rote and the repetition; being talked about and talked to, rather than talked with; the waiting; and the loneliness. I watch as the occasional short-term stay patient is relegated to the hallway due to the unavailability of rooms. It’s a reminder to me how drastically the situation for patients and their families has changed in recent years. Once hospitals were where you stayed when you were too sick to return home; now you go home anyway, cobbling together your own nursing services from friends, relatives and drop-in professionals.

In hindsight, I admire the nurses who work on Unit 42— I remain grateful for the ones who went out of their way to make me more comfortable, especially those who took a couple of extra minutes to offer me some needed words of encouragement. In general, the staff does their best to provide first-rate care, even on an overcrowded unit in what is unmistakably a vintage 1960s building.

I can still visualize myself under their care and the thoughts racing through my mind. It’s only the second time in my life that I’ve been hospitalized, and the previous time it wasn’t on a large oncology unit. This time my situation seems more unbearable to me, I feel somehow traumatized. Being on a cancer unit shakes your illusions of immortality. It robs you of the sense of invincibility and innocence that once protected you. I’ve never directly experienced such an atmosphere—one filled with hope, fear, anguish and despair. There are times during my stay when I think there should be tears oozing out of the drab, greyish walls that I have surrounding me.

LIke many of the other patients my surgery has been fairly extensive, it has ultimately involved a small bowel resection as well as the removal of my appendix and omentum. Time creeps slowly as my condition gradually improves. Due to some unexpected complications, it takes until December 24 for the oncologists to finally agree that I am well enough to be discharged. During the course of my stay I’ve required several blood transfusions, numerous tests and scans and too many pain and nausea medications for me to keep track of. I am so incredibly anxious to go home that I’m already changing into my clothes when my mom and brother appear in the door of my room. When I leave the building through the busy lobby on Christmas Eve, I fear that psychologically I will never actually leave behind the experience of being a patient on Unit 42. I sense that it will influence the remainder of my life.

Celebrating the Ovarian Cancer Community

In the past few years I’ve noticed a growing amount of energy and a stronger sense of purpose within the Canadian ovarian cancer community. Not that we haven’t always been a small but passionate group, committed to fighting this disease and the devastation that it inflicts on women and their families. However, I’ve noticed a gradual shift from when I was first treated six or seven years ago. When I was initially diagnosed with ovarian cancer in November 2011, I can remember that Ovarian Cancer Canada’s primary focus seemed to be on awareness and prevention as well as on support and better resources for women already fighting the disease. But now they have adjusted their mandate to involve more advocacy at the level of the federal government. Pushing for additional research and better treatment options for women with ovarian cancer has become their most important objective.

An estimated 2,800 Canadian women are diagnosed with ovarian cancer each year, an estimated 1,800 die from the disease. There is no question 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. Meanwhile, additional research in the area of immunotherapy might give renewed hope to many of us living with ovarian cancer or facing a recurrence.

 

ParliamentHill

 

It was a major triumph for the Canadian ovarian cancer community when the latest federal budget allocated 10 million dollars to ovarian cancer research. Over the past four years I’ve 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 helped persuade 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.

While it’s true that ovarian cancer is most often diagnosed in women in their fifties or sixties, it’s a myth to believe that it is only an “old woman’s” disease. I was 46 years old when I found out that I had ovarian cancer. I’m always shocked when I learn about women much younger than I was receiving a similar diagnosis, my heart aches as I witness a life-threatening disease try to shatter their hopes and dreams. It hurts me to see the impact that ovarian cancer can have on their relationships, careers and future ability to have children. I have deep admiration for younger ovarian cancer patients, they often possess a wisdom and maturity that seems beyond their tender years.

 

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Ashley Shandrel Luther  (Elly Mayday)
April 15, 1988 — March 1, 2019

I recently mourned when the community lost a powerful advocate and inspirational leader. The internationally renowned model Elly Mayday passed away in March. Elly Mayday’s given name was Ashley Shandrel Luther. She was born on April 15, 1988 and grew up in Aylesbury, Saskatchewan. The body positive model and activist was first diagnosed with ovarian cancer when she was just 25. Elly was diagnosed with Stage 3 ovarian cancer around the same time that she had two modelling contracts offered to her. But instead of stepping out of the light, she welcomed it. “I figured that maybe I could help someone going through something similar, while continuing on with my own dreams. I mean, I was going through it either way, why not make it as positive as possible?” she once said. Elly vigorously pursued modeling while bravely sharing intimate details about her cancer treatments with her huge number of fans and social media followers. Her legacy will continue to be an inspiration to many.

Health Care for All

When I was first diagnosed with cancer in November 2011 I was like many Canadians, I was proud of our universal health care but I had never really been required to test it. I had never dealt with a chronic or life-threatening illness before. I’d never even been hospitalized for surgery or seen the inside of a cancer centre. My innocence of what’s involved in being treated for cancer was shattered almost literally overnight. It took three surgeries and several rounds of chemotherapy to force my disease into remission, along the way there were too many outpatient appointments, tests and scans for me to count. I’ve currently logged thousands of hours in hospitals and seen dozens of physicians and physicians in training, that’s enough to consider myself an insider when it comes to the basics of Canada’s health care system.

It is by no means a perfect system and I realize it has many flaws, but I would still defend it especially against the way that health care is delivered in the United States. “Regardless of political allegiance, Canadians are nearly unanimous that a universal health system is a good thing— for reasons of economics and social justice,” writes Andre Picard in Matters of Life and Death. Indeed, the role of Tommy Douglas in shaping publicly funded health care over half a century ago is celebrated and sometimes mythologized. Obviously, I have a reason to get more emotional over Douglas and his contribution than most Canadians. As a cancer patient I acknowledge his legacy as I go through my treatments and each time I use my Alberta Health card or red Tom Baker Cancer Centre card.

Tommy-Douglas

Tommy Douglas speaking at a political rally.

 

Lately I’ve been reading a lot online and in the media about the Canadian health care system and how it stacks up against the radically different private health care system that is offered in the United States. Needless to say, President Donald Trump’s attempt to repeal Oboma Care has brought these important issues to the forefront. I belong to a Facebook group for ovarian cancer survivors and the women are predominately American. I shudder at the issues that many of them are facing in terms of insurance and their finances. For example, one woman in the group posted that she felt pressured financially to return to her job during treatment.

“I had to go back to work this week, well I had no choice. I need to pay my health insurance premium. My job is very physical so I had to get clearance from my doctor. My next chemo is Tuesday it will be my 5th of 6. I have never felt this exhausted.”

When I learn about cases in which people seem desperate or on the verge of financial collapse, I can only say that I’m thankful beyond words that I live in Canada. Here I can receive excellent state of the art care without the financial burdens that are faced by many U.S. cancer patients.

Medicarel

Many Americans criticize Canada’s public health care system because they perceive it as having long wait times and outdated technology. This has definitely not been my personal experience as a cancer patient. I will never forget when Dr. Danielle Martin, a Canadian health policy expert, travelled to Washington to testify before a special senate hearing. Senator Bernie Sanders had organized a hearing about what the American health care system could learn from other countries about controlling costs and ensuring universal coverage. During her testimony, Dr. Martin was confronted by a rather smug U.S. senator. Her composure and the way that she handled the situation made many Canadians, including myself, proud.

SENATOR BURR:  Dr. Martin in your testimony you state that the focus should be on reducing waiting times in a way that is equitable for all. What length of time do you consider to be equitable when waiting for care?

MARTIN: Well, in fact the Wait Time Alliance in Canada, sir, has established benchmarks across a variety of different diagnoses for what’s a reasonable period to wait . . . You know, I waited more than thirty minutes at the security line to get into this building today, and when I arrived in the lobby I noticed across the hall that there was a second entry point with no lineup whatsoever. Sometimes it’s not actually about the amount of resources that you have but rather about how you organize people in order to use your queues more effectively. And that’s what we’re working to do because we believe that when you try to address wait times you should do it in a way the benefits everyone, not just people who can afford to pay.

SENATOR BURR:  On average how many Canadian patients on a waiting list die each year? Do you know?

MARTIN: I don’t, sir, but I know that there are forty-five thousand in America who die waiting because they don’t have insurance at all.