Give Us Some Respect

As a cancer survivor, I sense that lately I’m not always getting the respect that I deserve. The healthy and able bodied appear to be increasingly apathetic, indifferent or self-centered concerning the needs of those of us with cancer. It’s a serious lack of respect that many in society are regarding us with, they treat us as if we are of little worth or disposable. This disrespect has come to a head in the past year or two, some experts even argue that our civil society has begun to deteriorate under the strain of the pandemic. It’s become every person for themselves or a Darwinian attitude that favours survival of the fittest. Here are a few fundamental ways that you should support cancer patients, as well as those with other chronic illnesses and disabilities.

Appreciate that we are at higher risk from COVID-19.

The pandemic is over or “we have to learn to live it” are becoming the new mantras as society becomes increasingly weary of the international health crisis. What’s fascinating to me about those who ask “how long do you plan to wear a mask indoors?” is that it hasn’t occurred to them that most of us who have survived cancer are comfortable not knowing the answer to that question. I’m used to living with unpredictability and not knowing what the future might bring. I can cope with the uncertainty of not knowing when this pandemic will actually end.

Not wearing a mask indoors right now is the perfect analogy for ableism, it tells me you believe you are invincible and take your health for granted. Your choice not to mask is a red flag that you don’t think about anyone beyond yourself. You can’t imagine that you’ll ever become disabled, or dependent on others. When you don’t wear a mask, and you look over and observe me masked, it reveals a great deal about you. It informs me that you are short-sighted and you think that if you survive COVID you’re fine. You don’t stop to consider possible long-term outcomes, such as organ damage, that might occur months or years later. 

Regrettably, I perceive your strong independence, and it’s the toxic kind. I can hear you making bold statements like “it’s not my fault if other people get sick” (maybe in fact it is). I see implications that my right to life and quality of life are not worth protecting. I get an uncomfortable reminder that you’re not in solidarity with me or millions of other cancer patients. 

Place us at the centre of a circle of support.

Being a caregiver or immediate family member when someone has cancer is enormously challenging, but it doesn’t equal the experience of the actual patient who has been diagnosed with a life-threatening disease. A technique has gained attention for dealing with a major life crisis, such as a cancer diagnosis. It’s called the ring theory of kvetching, and was named by the psychologist Susan Silk. When Silk first wrote about the concept in the LA Times in 2013, she drew on her personal experiences as a breast cancer patient. Once when she declined a colleague’s visit, pleading exhaustion, she was told, “This isn’t just about you.” “It’s not?” she wondered. “How is my breast cancer not primarily about me?” 

The main principle of Silk’s ring theory is that support, caring, comfort FLOWS IN. Kvetching, venting, complaining, requests for empathy, all of this only FLOWS OUT. The person or people with the serious illness, trauma, or other enormously challenging life situation — they get to complain outwardly to their first circle of support. The first circle of support, usually spouses, parents or other immediate family members do NOT vent — about the challenges, the loss of sleep, the emotional toll, etc. — to the person at the centre of the trauma.

Don’t come to us with unsolicited advice.

The truth I’ve come to accept is that I didn’t cause my cancer and I don’t have the ability to simply will it away. However, when my ovarian cancer was initially diagnosed, I was more desperate and naïve, more willing to imagine these things were still under my control.  I was hospitalized for over a month and a half at Calgary’s Foothills Medical Centre. 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. 

Looking back at the trauma I faced as a new patient, both my desperation and need for reassurance were justifiable. Unfortunately, some of the things that people either said or wrote to me during that time were highly inappropriate. Many of their suggestions worsened, or even exploited, my fear and vulnerability. In particular they reinforced the misconception that I could directly control the course of the insidious disease that had invaded my body. On occasion this might have been due to malevolence, but I still believe the leading cause of people’s poor advice was ignorance.

The Cancer Playlist

For almost my entire adult life, I’ve had a deep and personal relationship with sound because I know how precious it is. Since my late twenties, I’ve been deaf in my right ear, the doctors think my sudden hearing loss was probably a rare side effect from an inner ear infection. Long before my cancer diagnosis I would miss a lot in casual conversation, so I gradually learned to read body language, lips or other important cues. I would manoeuvre my way through social settings as friends and family took part in choreographed dances to get on my “good” side. Unfortunately, when I became a cancer patient, I learned that many treatments damage the inner ear resulting in some degree of hearing loss. This is a possible complication even for oncology patients who initially have quite good hearing, but for some patients like myself the risks are substantially higher. For us cancer treatment often results in additional damage in one or both ears. Inevitably, chemotherapy drugs combined with surgery and months of hospitalization have rendered my pre-existing auditory condition worse than before.

Although I’m partially deaf, I refuse to let my circumstances prevent me from enjoying the benefits of music. I still listen to music as best I can and this has been especially comforting throughout my cancer journey. Like almost everyone I have an iTunes library, I frequently enjoy listening to the songs using over the ear wireless headphones. My ovarian cancer playlist currently includes the following tracks.

  • Rainy Days and Mondays
    The Carpenters and the Royal Philharmonic Orchestra
  • Handle With Care
    The Travelling Wilburys Vol. 1
  • (You Make Me Feel Like) A Natural Woman
    Aretha Franklin Love Songs
  • Stand By Me
    John Lennon – Gimme Some Truth
  • Imagine
    John Lennon – Gimme Some Truth
  • The Circle Game
    Joni Mitchell – Hits
  • For All We Know
    The Carpenters and the Royal Philharmonic Orchestra
  • Bridge Over Troubled Water
    Simon and Garfunkel’s Greatest Hits
  • What a Wonderful World
    Louis Armstrong – The Ultimate Collection 
  • Over the Rainbow
    The Very Best of Judy Garland 

Some cancer patients choose to engage in music therapy which is the use of music interventions to accomplish individualized goals. These patients are guided by a credentialed professional who has completed an approved music therapy program. Formal music therapy was defined and first used by the United States War Department in 1945. It helped military service members recovering in Army hospitals. The therapy may include listening, singing, playing instruments, or composing music. However, musical skills or talents are not required to participate, nor is perfect hearing.

Today music therapy interventions are used in a variety of healthcare and educational settings. Studies have shown that such therapies may help patients in many ways, including psychologically, emotionally, physically, spiritually, cognitively and socially. A short list of the potential benefits includes:

  • Lowering blood pressure.
  • Improving memory. 
  • Enhanced communication and social skills. 
  • Self-reflection. Observing your thoughts and emotions. 
  • Reducing muscle tension. 
  • Self-regulation. Developing skills to manage your thoughts and emotions. 
  • Increasing motivation. 
  • Managing pain. 
  • Increasing joy. 

I recognized many years ago that music helps me to deal with certain emotions that I’m feeling, this became even more apparent to me after I was diagnosed with cancer and experienced some of its devastating social and emotional impacts. For example, God Bless the Child by the legendary Billie Holiday is one of my favorite songs, but lately both the powerful lyrics and her exquisite delivery keep going through my mind. I like that God Bless the Child extols self-reliance while it condemns those who ignore us, repudiate us or treat us as inferior when we are unable to be self-sufficient. 

In her autobiography Lady Sings the Blues Holiday indicated an argument with her mother over money led to the song. Apparently during the argument, she said the line “God bless the child that’s got his own.” Anger over the incident led the renowned vocalist to turn that into a starting point for a song, which she worked out in conjunction with Arthur Herzog. In his 1990 book Jazz Singing, Will Friedwald describes the composition as “sacred and profane” as it references the Bible while indicating that religion seems to have little or no effect in making people treat each other better. Sadly, Billie Holiday was only 44 when she died—she had fought a long, terrible battle with alcohol and drug addiction.

COVID’s Second Bitter Winter

Omicron, the rapidly spreading COVID variant that seems to be more successful at evading the body’s immune response, is enough to break anyone’s spirt two years into the pandemic. But for many cancer patients it’s been like a punch in the face followed by a hard kick once we’ve hit the floor.

First, we must live with the awareness that COVID is far more dangerous for us than it is for ordinary people who aren’t dealing with a malignancy. The truth that cancer patients remain at a much higher risk of hospitalization and death from COVID-19 even if they are fully vaccinated, was recently verified by a small-scale study. The study, published in the journal Annals of Oncology, found that cancer patients had a 13 per cent mortality rate if they suffered a breakthrough infection. This important research was conducted by the COVID-19 and Cancer Consortium, a group of 129 research centres which have been tracking the virus’ impact on cancer patients. It’s considered to be the first study to investigate the risk levels for cancer patients who experience breakthrough cases.

The most demoralizing issue is that many individuals in government and society continue to abandon us, they treat the vulnerable or high risk as if we are inconsequential. For the past two years I’ve witnessed the casual selfishness of those who are considered healthy and able bodied. I’ve also seen cancer patients endure hardships that are far worse than what should be expected of them. Not only is there the prolonged stress of undergoing cancer treatment as anti-vaxxers picket hospitals, there’s also the exasperation of flip-flopping politicians who wield power over our lives. I’ve become incredibly frustrated with a number of provincial and state governments during the pandemic, because to me it’s disturbingly obvious that cancer patients, the elderly or citizens with chronic health conditions aren’t their priority. Some politicians will jeopardize our lives for their political careers and the economic advantage of a privileged few.

Official statistics report that globally about 5.5 million people have died of COVID-19. However, it’s still unknown how many deaths there have been indirectly as a result of the strain on heavily overburdened health care systems. Of course, individuals must take some personal responsibility for this problem, but governments are primarily responsible. In Canada almost 560,000 fewer surgeries were performed between March 2020 and June 2021 due to cancellations and delays, compared with the pre-pandemic period. Often, we’ve been reassured by government and health officials that it’s only elective surgeries that are being significantly impacted. But doctors and patients argue that the term “elective” is deceptive. For example, cancer surgery is not “elective” like a class in school. It just means you likely won’t die if your surgery happens on Thursday instead of Tuesday, unlike a burst appendix. 

Naturally cancer patients and their families are concerned about access to care as well as the potential disruptions to treatment as the pandemic drags on. Unfortunately, experts are now warning us that cancelled surgeries are only a single manifestation of this crisis. Two years into the pandemic some oncologists are seeing first-hand the “tsunami” of advanced cancers that are less curable than if they’d been diagnosed at an earlier stage. This increase is happening due to a combination of factors: 

  • Patients with cancer symptoms feared coming to hospitals, which are taking precautions to reduce the risk of contact with COVID-19.
  • People missed preventative screenings like mammograms and colonoscopies.
  • There were cuts to operating room time during lockdowns, slower diagnostic tests and biopsies, and reduced intensive care unit staffing for surgical patients.

Finally, it’s never been more isolating or lonely to be a cancer patient and the journey has never seemed more precarious. Those with advanced or incurable disease have had their lives impacted the most. “I knew that when they told me I was incurable, my years of life had shrunk down. I was not prepared to be robbed of experiencing them by being locked in my home for two years,” wrote one woman. “Of the few people that can visit, I have to warn them that I look very different. I’m a skeleton compared to the happy, size 14 I once was (and yes, I was happy at 14). Now my bones stick out all over. I need help getting up, and none of my clothes fit.”

Even during their medical appointments or hospitalizations, cancer patients are often required to abstain from close physical contact. This comes at a time in their lives when they probably need this type of support the most. “My family doctor delivered the diagnosis over the phone. Whenever I received bad news at the hospital, I walked to my car without holding anyone’s hand. The day of my surgery in July 2020, I lay on a gurney, my chest marked up with Sharpie where the incisions would be to remove my breasts, and waited for hours staring at the chair no one was allowed to sit in,” recalls Ann Cavlovic. Worse, wearing masks and other PPE sometimes means that even doctors and nurses are unable to offer the comfort of a warm hand in situations when a patient’s relatives are absent, trapped on the other side of the world or quarantined. As the longstanding slogan argues, no one should have to face cancer alone.

You Lift Me Up!

I’ve chosen to dedicate this Teal Diaries post to two amazing women who recently passed away, their legacies are something that I wish to make known and that I strongly admire. Although I never met them in person, Dr. Nadia Chaudhri and Julie Rohr had an impact on me and on thousands of others within the global cancer community. I will forever remain grateful to them for choosing to share their lives so publicly, for inspiring me, and ultimately for becoming such a positive part of my own journey with ovarian cancer. Nadia and Julie’s lives were tragically cut short, however before they passed on, they taught me so many lessons about what it is for us as human beings to face our mortality. Both women embodied qualities such as humility, resilience and strength of spirit, but above all they revealed to me something fundamental. They both demonstrated through example that we should always endeavor to treat each moment that we’re alive as precious. 

The Legacy of Dr. Nadia Chaudhri

Dr. Nadia Chaudhri was driven and passionate, a gifted academic as well as a wife and the mother of a young son. Just as the pandemic was beginning, she started feeling unwell and visited her doctor. Some of the issues that she reported to her physician were fatigue, lack of appetite, abdominal bloating and frequent urination. Nevertheless, it took Nadia months of personal advocacy and multiple referrals to different specialists to finally determine what had been causing her symptoms. In June 2020, at 43 years old, the Montreal neuroscience professor, was diagnosed with metastatic ovarian cancer. That fall, she went through chemotherapy but was told the following spring the cancer would be terminal. 

Nadia chose to share her life as the disease progressed and posted some of the most poignant moments of her journey on social media. She eventually gained over 150,000 followers on Twitter. While she was in the hospital, Nadia drafted a GoFundMe pitch to help fund travel for young scientists — particularly those who are marginalized or underrepresented in the field — to be able to attend the Research Society on Alcoholism’s annual conference. On the first day, her initiative raised $50,000 US. Soon after Nadia’s GoFundMe launched, Concordia University also set up a fundraiser in her honour. The Nadia Chaudhri Wingspan Award will become an annual scholarship to support neuroscientists from underrepresented backgrounds, including students who may face barriers related to systemic issues like racism, sexism or geographic origin.

Like thousands, I watched in wonder as Nadia accomplished more in her final weeks than most entirely healthy people would normally undertake in a year. From her palliative care bed, the beloved wife, mother, colleague and teacher rose awareness about ovarian cancer, the devastating disease that was gradually killing her. She even continued her fundraising for the Wingspan Award. She posted videos of her daily hallway “shuffle” and invited people to donate. Though Nadia disclosed the harsh realities of living with a terminal diagnosis—such as the angst she faced before telling her young son about it—she also shared pockets of wisdom and joy, including paintings she made, close-ups of flowers and pictures of her and her family.

Myself, I’ll always be grateful for the heightened public awareness Nadia was able to raise concerning ovarian cancer. “I am mad as hell that I was misdiagnosed for so long,” she tweeted this year on World Ovarian Cancer Day, May 8. “And mad as hell that there’s been minimal progress in the treatment of ovarian cancer.”

The Legacy of Julie Rohr

Julie Rohr was a young mother from Edmonton, Canada, she was living with retroperitoneal leiomyosarcoma (LMS), a cancer of the soft muscle tissue. It’s one of those extremely rare cancers — only about one in one million people receive the exact diagnosis Jule did — which means there’s little funding for research or treatments. When they first discovered her cancer medical experts informed her that she would be lucky to live five years. However Jule ultimately lived six years beyond her initial diagnosis, making the most of each moment. As a cancer patient, she endured several major surgeries in addition to many grueling treatments, an ominous list that included radiation, ablation, and chemotherapy.

Julie’s love of live and her constant hope and positivity made her well-known in Alberta and throughout Canada; she was treasured, especially within the cancer community. Even when periodic tests would show that her cancer had spread or returned, she remained a force of nature and still devoted her time to encouraging others facing the disease. Julie’s cancer advocacy and powerful words often made the local or national news, in addition she had thousands of followers on social media.

“Even though I have been through many surgeries, radiation, chemo and all the rest, cancer hasn’t (and can never) take our spirits, can it? We all make the choice, every day, to look for the good in life. To build one another up, even on the hardest days.” 

Julie Rohr was just 38 years old when she died 

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, what I wanted other people to know and when. 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. Recently many of us were shocked once again by the news that Hollywood 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. Before his death, he was able to choose how much of his cancer journey he wanted to share, when and with who.

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

In anticipation of a new decade, I find myself performing 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.