Cancer Patients Face a Health System in Crisis

“Since the pandemic’s start, we’ve worried about the health system’s dramatic collapse but, like my dying patients, we’re witnessing a slower death; a system imperceptibly degrading until one day, like a cancer-riddled body, it just stops working entirely.”

Dr. Gabriel Fabreau

Doctors, nurses and patient advocates in both Canada and the US are sounding the alarm that after two years of COVID-19, our hospitals have never been worse off. This incredibly disturbing description of the health care system is from a recent opinion piece in my local newspaper. The piece was written by Dr. Gabriel Fabreau, a general internist and an assistant professor at the O’Brien Institute for Public Health at the University of Calgary. Fabreau argues that the quality of care in Alberta is degrading, increasingly unsafe and often without dignity.

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 five cycles 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.

Photo by Anna Shvets

Even a decade ago, long before the pandemic, there were many warning signs that the system was under strain. During my cancer surgeries I often felt an urgent need to leave the hospital and go home, I never felt relaxed or like I could take my time to heal. Even then, it may have been easier to define hospitals by what they are not. They’re not places for the sick to get well, not unless healing takes place in the brief interval of time that makes the stay a compensated expense. My hospital treatment was primarily covered by Alberta’s universal health insurance, but I needed my personal Blue Cross insurance plan as well. Through it all I was aware that hospital beds in Alberta cost around $1000 per day and that those beds are in limited supply.

I remember watching in surprise as some short-term stay patients were relegated to the hallway due to the unavailability of rooms. Unfortunately, what I witnessed was a typical example, an unpleasant reminder of how drastically the situation for patients and their families has changed in the past couple of decades. Once hospitals were where you stayed when you were too sick to survive at home; now it’s become customary to go home anyway, cobbling together your own nursing services from friends, relatives and drop-in professionals.

Justifiably the deteriorating situation during the pandemic has me concerned. As a cancer survivor and someone who has relied heavily on health care, I’m becoming more worried each day. The reality is that if my cancer recurs or if I have to resume active treatment, I may not be able to obtain the essential care I need. Fabreau cites the growing deficit in cancer screening and follow up care as the most troubling to him.  “Most tragically, we’re seeing missed cancers, illnesses so advanced they are now incurable. We know delayed diagnosis and treatment increase cancer deaths. Canadian research predicts over 21,000 excess cancer deaths by 2030. Preventable deaths because patients couldn’t or didn’t have appropriate cancer screening.”

Photo by Cedric Fauntleroy

I’m enraged and disheartened because, as Dr. Fabreau explains, the disastrous situation that we now find ourselves in was mainly avoidable. Even before the pandemic, the supply of health care workers was becoming inadequate. Canada has among the lowest physician and an average nurse supply per capita among high-income countries. Both workforces are running on empty: over half of physicians and more than 75 per cent of nurses in Canada are burnt out. It’s now disturbingly obvious that action should have been taken years ago to hire, train and recruit more health care workers. 

Finally, to reduce hospital demand, we must stop pretending COVID-19 is over when it is not. The pandemic is far from ended, particularly for cancer patients and others who are immunocompromised. It’s true Canadian COVID transmission is cresting as we enter the spring and summer seasons, but that simply means we must use this short reprieve until fall to prepare. Governments and health authorities would be wise to use this time to focus on important initiatives such as improving indoor ventilation and uptake of vaccine booster doses.

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.

What I Know About Cancer Survivorship

It’s been over ten years since my cancer diagnosis and there are still times when I ask myself soul searching questions about this disease, especially its impact on society and on individuals. A lot of what I’ve written about in this blog involves the terms that we use when we talk about cancer, take survivor and survivorship for example. Although these expressions seem to be embedded in the cancer lexicon, there is still confusion regarding their meaning. I personally believe the terms survivor and survivorship encompass the following truths:

1. You are always a cancer survivor.

“Cancer survivorship begins at diagnosis and covers the physical, psychosocial, and economic issues of cancer, from diagnosis until the end of life.” 

As a woman who has fought gynaecological cancer, I’ve come to accept this commonly held view of cancer survivorship. First I accept the all-encompassing notion that’s presented in this definition because cancer does impact every single aspect of a person’s life. In retrospect, I also believe that my survivorship began that moment in my gynecologist’s office when he told me the devastating details of my pathology report. Simply being diagnosed with cancer made me a survivor, from this perspective I didn’t have to wait until after I had completed a full year of treatment or until I was officially in remission. Before the surgeons at the Tom Baker Cancer Centre cut into my body, and before the first drop of chemotherapy solution ran ominously into my veins, I was already a survivor in the eyes of the cancer community. I appreciate now that I’ll always be part of this incredible, strong and resilient group.

2. No one is less worthy of being called a cancer survivor.

The commonly accepted definition of “survivor” within the cancer community is simply a person diagnosed with cancer. So once the terrifying sentence, “I’m so sorry, the biopsy shows that you have cancer,” leaves your doctor’s lips and pierces your soul, you officially begin life as a cancer survivor. I remember my first chemotherapy treatment and how insecure I was, part of me felt like I was less of a “survivor” than some of the other cancer patients who had been fighting the disease for years. I can laugh at the situation now, but I was rather worried that some of the veteran chemotherapy patients might be able to tell that I was a newbie. They would ascertain that I looked too healthy and had all of my hair! When I arrived for my first session, I noticed that the people around me seemed to have many types and stages of cancer—what is more, a good number of them in the waiting room exhibited full heads of hair.

3. Cancer survivorship means confronting loss.

Emotions such as fear, hopelessness and grief infiltrate the lives of cancer survivors. Most psychologists maintain that grief is a person’s normal, healthy response to a loss. Understandably, I grieved after my father died, he was only 63. But I was rather surprised to find myself experiencing similar feelings when I was diagnosed with ovarian cancer. As I came to terms with the devastating diagnosis, I learned firsthand that the loss that triggers grief isn’t always physical. You can experience sorrow 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, every cancer survivor is different. Give yourself time to experience your loss in your own way. Also understand that as a cancer survivor it’s important to make a commitment to yourself. You should make it a priority to take care of yourself emotionally, spiritually and physically.

4. Cancer survivorship is life-altering.

It’s been proven that when we are diagnosed with cancer our attention often turns away from the small and trivial distractions that surround us. Taking life for granted has become our culturally-induced default mode — we are trained to overlook the essential. As a cancer survivor I’ve ultimately been freed from this monotonous, addictive cycle. For example, I’m grateful for the oncologists who oversaw my case, especially my surgeon. I remain in awe of the fact that they literally saved my life, I also remember the nurses who were with me 24/7 in the hospital. I established a bond with several of them when life-threatening complications forced me to spend seven consecutive weeks on the cancer unit. Weeks in cancer time pass by like years, almost decades, but the magnificent oncology nursing team that I had somehow helped me pull through the agonizing eternity I found myself living .

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

Hospitals: What Every Patient Needs to Know 

What is it like to be hospitalized, I mean genuinely hospitalized for weeks on end until a tiny antiseptic room with curtains around the bed gradually becomes your home? For most of my life I had no real idea, but an awareness of severe illness requiring prolonged hospitalization can be one of the terrible consequences of becoming a cancer patient. In this blog post I’ll provide tips to cope with hospitalization and to endure the experience of being in a medical institution, specifically when undergoing major surgery.

First: Don’t let them diminish your identity.

The health care system and the medical establishment are especially challenging—we are made to feel anonymous and are often reduced to nothing more than numbers or charts, it hurts that we are being robbed of our individualism. I was personally made to feel an acute lack of identity when some nurses and hospital workers didn’t call me by my correct or preferred name. Their error would stem from the fact that I’ve always been called by my legal middle name, and not my first like most people. 

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

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

The Foothills Hospital in Calgary is one of Canada’s largest medical facilities.

Second: You deserve compassion and respect.

The best doctors or nurses make time to connect with their patients, and they genuinely care about what you are thinking and feeling. For example, if their patient is feeling cold, they arrange for a blanket, if their patient is thirsty, they get the individual some water. Without addressing these underlying human needs, impressive hospital designs and state-of-the-art equipment are useless. After a while it’s only our humanness that matters, the luxurious seating and lighting become insignificant compared with medical staff who consistently treat those under their care with compassion and dignity. 

I remember an incident that occurred at one of the lowest points during my rigorous cancer treatment. It was the middle of the night and I’d already spent several grueling hours in the emergency room when I was finally sent for a CT scan. The radiologist performing the scan was very 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 put in poorly by someone in the ER and that it required redoing. However, instead of replacing 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 unit after we were finished.

Third: Remember that hospitals can be dangerous. 

A recent study conducted by the Canadian Patient Safety Institute confirmed how prevalent accidents and medical errors are in hospitals. One in 10 Canadians have personally experienced a Patient Safety Incident (PSI), with many more saying a loved one has. Not surprisingly caregivers and those with a chronic illness were significantly more likely to have experienced a PSI, both personally and having a family member who experienced one. According to the study, misdiagnosis, falls, infections and mistakes during treatment were the most common types of PSIs. Meanwhile, those who had suffered a Patient Safety Incident most frequently cited distracted or overworked healthcare providers as contributing factors that led to the incident. 

Medicine as it is practiced now is so complex and time is so limited to healthcare providers that, even in the best hospitals, certain aspects of patient care can be overlooked or misconstrued. As a patient I quickly realized that I must be an advocate or have an advocate. Sometimes out of fear, pain or confusion I was unable to be my own advocate. This is why I believe it’s almost always essential to have a family member or loved one visiting you regularly and advocating on your behalf. However, the decision about which and how many visitors is still up to you. Remember it’s not your job to entertain visitors. You should encourage friends and family who understand your needs, and discourage those visitors who may not be completely in tune with you.

Sometimes Life is Beautiful

Lately I’ve been finding it harder to appreciate the beauty around me, this is understandable given that I’m a cancer survivor living through a devastating global pandemic. All of us are exhausted and demoralized as we begin the third year of an ongoing international health crisis. Even in these dark times, there are several ways to forge a deeper bond with the beauty that is in this world and I’ll discuss the most important ones here. 

Experience Beauty Through Art

There’s an emerging group of professionals who employ the arts to help people heal. The new field is called creative arts therapies, and it encompasses a wide range of modes of expression including art, dance/movement, drama, music and poetry. When cancer patients undertake these activities, whether individually or with the guidance of a creative art therapist, they stand to benefit psychologically and emotionally. Recently there’s been a trend toward simple or old-fashioned crafts and hobbies such as knitting. I’ve even used adult colouring books to relax and reduce daily stress. This concept started about a decade ago with the publication of Johanna Basford’s Secret Garden. 

More recently, I decided to take my colouring hobby a step further and enrolled in an art class offered through Wellspring Calgary. I acknowledge that some of my inspiration came from Nadia Chaudhri who created some lovely works of art from her palliative care bed. The Introduction to Watercolour course that I participated in had to be conducted online via Zoom, but I did my best as professional artist, Karin Huehold, taught about 20 online students some basic techniques. 

Experience Beauty Through Nature

I live in Canada and during the extremely long, cold winters I’m obliged to spend the majority of my time indoors, for me January and February are discouraging—sometimes almost brutal. It’s generally agreed that exposure to nature is extremely beneficial for people with cancer or other chronic illnesses, improving mood and easing anxiety, stress, and depression. Current research findings suggest that natural settings such as parks, wilderness areas, urban green spaces and gardens have the potential to improve both physical and mental health. Numerous health scholars claim that ecotherapy can promote wellness and healing. The practice is also known as green therapy, nature therapy, and earth-centered therapy.

About a decade ago, soon after I was diagnosed with cancer, I discovered a meditation technique called mindfulness. Being outdoors often helps me be mindful, I’m able to relax and to more fully appreciate the unique moment that I’m living in. 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.”

Find Beauty and Strength Within

When you are diagnosed with cancer, you’ll almost certainly 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 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.

Sometimes I wish that a magical force or mystic healer 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 decade 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 fleeting.

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 Want Me to Do What?

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

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

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

The truth I’ve come to accept is that I didn’t cause my cancer and I don’t have the ability to simply will it away. However, when my ovarian cancer was initially diagnosed, I was more desperate and naïve, more willing to imagine these things were still under my control. Looking back at the trauma I faced as a new patient, both my desperation and need for reassurance were justifiable. In 2012 I was hospitalized for over a month and a half at Calgary’s Foothills Medical Centre. The women’s cancer ward is predominately a place of bravery, triumph, heartbreak and tears. When I looked into some of the other patients’ eyes, I could see them begging for a future, and I understood that they would do almost anything for the gift of just a few more months in this world. 

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

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

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

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

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

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

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 

Five Brutal Truths About Having Cancer

You will realize that life is often random or unfair.

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

Your closest relationships will be severely tested.

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

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

You may be faced with financial hardship.

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

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

Your overall health could be affected forever.

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

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

You will witness many other cancer patients die.

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

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

Crushing the Third Wave

It’s around lunchtime on a windy spring day as I walk into the building and begin navigating the checkpoints that have been set up for the COVID vaccination clinic. As I make my way to the old gymnasium in the former children’s hospital, I’m relieved that I’ve managed to book an appointment—after several months of waiting it’s finally my demographic’s chance. Like hundreds of thousands, I had to first wait in anticipation while following the latest updates from the Alberta government concerning a complex vaccine rollout plan. 

I’m intensely aware as I’m about to be vaccinated, that our province has one of North America’s highest COVID-19 rates. Of course, it’s a dubious distinction and our third wave outbreak has garnered international attention in the media. In recent weeks American. television networks including CNN have covered the crisis and so has the venerable British newspaper The Guardian. As a cancer survivor and someone who is potentially vulnerable to complications from the virus, I’ve become extremely angry and frustrated.

Many physicians and leading public health experts have argued that it didn’t have to become this bad and that Albertans shouldn’t have to go through this nightmare. The third wave has been terrifying, especially for those of us who are not young or perfectly healthy, On the day that I’m ready to receive my first dose of Pfizer vaccine, Alberta has around 570 active cases of COVID-19 per 100,000 residents, more than twice the Canadian average. It’s the highest rate recorded anywhere in Canada at any point during the pandemic.

Regrettably, the province is now mired in its third major round of restrictions since the pandemic began last March. The latest surge has forced the reintroduction of strict, sweeping public health measures, closing all schools provincewide and temporarily shuttering many non-essential businesses. Most experts are citing a variety of contributing factors to explain exactly how we got into this situation or why Alberta’s third wave has become so severe. Here is their general consensus of what went wrong:

  • A premature easing of public health restrictions
  • An underestimation of COVID-19 variants 
  • An inequitable vaccine rollout
  • Non-compliance and non-enforcement regarding health restrictions
  • Refusing to prioritize the province’s schools and teachers

For the time being, I’ve joined a steady stream of hopeful Calgarians at the vaccination centre. There is light at the end of the tunnel I tell myself as I enter the gym and a woman takes my registration confirmation number and asks for my ID. Suddenly, I’m not just thinking about myself or my immediate geographic region, but the entire world. I wonder how many people will also get vaccinated today—both in Canada and around the globe. I believe in science and I understand mass vaccination will be one of the keys to ending this unprecedented pandemic that has claimed millions of lives.

Naturally there are segments of the population that are hesitant or sceptical about the new COVID-19 vaccines and are unsure if they should be immunized. History reveals that vaccine scepticism is as old as vaccines themselves. Increased resistance to compulsory smallpox vaccination during the 1870s and 1880s exposed the fragility of trust in both the political and medical establishment. The most radical opponents to vaccines used demonstrations and publishing to rally their cause. The situation is similar today, many doctors and infectious disease experts acknowledge that their work has been made more challenging due to the anti-vaccine movement. 

As I meet the diligent young nurse who is about to administer my injection, I know I trust both her and the medical and scientific community. Perhaps it’s my experience as a cancer survivor that allows that trust to come more easily. Sometimes I marvel that I’m alive because of medical science and what it’s capable of in the fight against cancer, during the search for a COVID-19 vaccine my sense of wonder was renewed. Never before in human history have vaccines for a pathogen entered final stage clinical trials and received approval for distribution to the public so rapidly. To me this doesn’t mean they cut corners or that proper clinical trials weren’t conducted— it’s only a testament to what the scientific community can accomplish when it works together toward one crucial goal.

Following my shot, I get up and move to the waiting area full of masked and freshly immunized patients. As a routine precaution people are asked to wait for at least fifteen minutes after their injection before leaving the vaccination centre. As I sit in my socially distanced chair, I think to myself that I will probably remember this moment for the rest of my life. Someone said that the stories you hold on to about the pandemic will be coloured by your own experience—but also by the experiences of those around you. In a way we’re already shaping our future pandemic narratives—the stories we will tell as individuals, as communities, as societies, and as nations about this epoch.