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. Worst of all, wearing masks, gloves and other PPE sometimes means that doctors and nurses are unable to offer the comfort of a warm hand when a patient’s relatives are absent, trapped on the other side of the world or quarantined. As the prominent 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. 

Cancer Diagnosis and Identity: Who are you?

One of the most significant mental health issues that I’ve recognized, both in myself and other cancer patients, is what the disease does to our self-identity. It’s as if we have to fight to remain ourselves after we are diagnosed with cancer. There are days when I feel caught in the middle of something. Although it’s true that ovarian cancer has substantially influenced my lifestyle, and to some extent how I view the world, it’s not all I am—I’ve struggled to make even those closest to me understand this paradox. It’s difficult to explain that while my self-identity is not entirely unchanged, I will always remain so much more than a cancer survivor or an oncology patient.

Regrettably, over the course of my journey, 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. For instance, one family friend became rather reclusive when she was informed that I was going through cancer treatment and behaved as if a cancer diagnosis might be contagious. She further assumed that all chemotherapy patients lose most of their hair and offered to loan me an old wig she had. But then, 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. It’s no wonder that some of us living with cancer still choose to avoid revealing our illness to anyone outside of our inner circle of family and close friends. We don’t want to be viewed differently—we just want to be normal, not defined by the disease. 

Of course, 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 middle name, and not my first like most people. I read a short poem recently that almost perfectly captures the feeling that I had on the cancer unit. Names by Wendy Cope describes a woman as she moves through life’s stages, the author deals with themes such as self-identity, ageing, illness and death. 

Names 

She was Eliza for a few weeks
When she was a baby –
Eliza Lily. Soon it changed to Lil.

Later she was Miss Steward in the baker’s shop
And then ‘my love’, ‘my darling’, Mother.

Widowed at thirty, she went back to work
As Mrs Hand. Her daughter grew up,
Married and gave birth.

Now she was Nanna. ‘Everybody
Calls me nanna,’ she would say to visitors.
And so they did – friends, tradesmen, the doctor.

In the geriatric ward
They used the patients’ Christian names.
‘Lil,’ we said, ‘or Nanna,’
But it wasn’t in her file
And for those last bewildered weeks
She was Eliza once again.

This poem becomes 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. 

Similarly, Bonnie Annis, a breast cancer survivor and contributor to Cure magazine, recently wrote about the identity trap that we find ourselves in. “Just because a disease comes knocking on the door, does a life necessarily become drastically changed? Sometimes, perhaps, but not always,” she insists. “Taking time to hold tightly to identity can actually help with the ability to get through cancer. For example, if a person fails to remember how resilient she was before cancer, she may find herself struggling to keep her head above water when things get tough.”

Annis concludes that none of us escape cancer unscathed. It’s a life-changing and life-altering disease, but allowing it to become our identity is not an option. We’re all too precious and too different to live within the confines of the world of cancer. We can’t afford to give it the power to rob us of our identities.

Why Most Cancer Patients Should Be Vaccinated Against Covid-19

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. Just over a year ago, when the death toll from the coronavirus stood at one and neither it nor the disease it caused had a name, a team of Chinese scientists uploaded its genetic sequence to a public site. That kicked off the record-breaking rush to develop vaccines. It’s difficult to associate anything to do with this pandemic with good fortune, but the fact that the culprit was a coronavirus — one that was strikingly similar to others that had previously leapt from animals to people — meant scientists could quickly rejigger vaccine projects in the works for those. It was almost like swapping a blue Lego for a red one in their assemblies.

In December 2020, Health Canada authorized the Pfizer-BioNTech COVID-19 vaccine. Soon there was more encouraging news when they officially authorized a second vaccine for the virus, an injection manufactured by Moderna. The first Canadians to be offered the country’s limited inventory of the vaccines were those considered to be most vulnerable, the staff and residents of nursing homes and long-term care homes were prioritized. The frontline doctors and nurses who have been risking their own lives during this pandemic were also given appointments to receive their immunizations against COVID-19. I watched, as some of the health care workers receiving the vaccine shed tears of joy and relief. Many proudly posted photographs of themselves getting vaccinated on social media, reassuring the public and preparing us all for when it would eventually be our turn.

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. 

Making sure that patients receive clear and accurate information is essential and everyone has a role to play. Ultimately preventing misinformation is a shared responsibility. The flow of medical knowledge works best when researchers, journalists and the public are strongly connected and considerate of one another. Nineteenth-century doctors tried to maintain boundaries between scientific journalism and the media, but were unable to prevent the public and journalistic demand for health information. That desire remains with us today. But even working together, the solution isn’t simple, experts maintain that changing behaviour in vaccine hesitant patients, isn’t always as easy as correcting misinformation. There’s still an emotional gap and trust gap that physicians regularly need to bridge in order to elicit this behavioural change.

Like all informed people, I accept the scientific conclusion that if you have active cancer, you’re at a higher risk for more serious outcomes if you acquire COVID-19. Cancer is considered an underlying medical condition. It’s a scientific fact that many cancer treatments, including surgery, chemotherapy and radiation therapy, can weaken your immune system, making it harder for you to fight the virus. Initial clinical trials on COVID-19 vaccines did not include people with cancer or those receiving treatments that can suppress the immune system. However, many professional organizations are endorsing the vaccines’ safety and efficacy for this group. Since individuals living with cancer are at increased risk of serious illness resulting from COVID-19, there is growing consensus among health authorities and oncologists that the benefits of vaccination outweigh the risks. Some exceptions include people who are severely immunocompromised or who have certain severe allergies .The National Cancer Institute emphasizes that people, including those with underlying medical conditions such as cancer, may get vaccinated if they have no history of severe allergic reaction (e.g., anaphylaxis) to any component of the vaccine.

As a final point, cancer patients going through active treatment are definitely at higher risk for COVID-19 complications, but what about cancer survivors or those whose cancer is in remission, such as myself? Little data is available to date on how the virus affects cancer survivors, but some early research suggests that we might also be at a higher risk for severe COVID-19 outcomes. One UK study found that the majority of comorbidities thought to be associated with poor COVID-19 outcomes were more common in the cancer survivors than the cancer-free controls. In general, cancer survivors had significantly higher rates of diabetes, asthma, and other respiratory disease, as well as more chronic heart, liver, and renal disease, and neurologic conditions, than controls. Nine years after my cancer diagnosis I appear fortunate to have few of these lasting health complications. Still I’ve made up my mind, after considering the research and the scientific facts, that I will be getting vaccinated as soon as I’m given the opportunity.


Further Reading

COVID-19 Vaccines: Separating fact from fiction on side effects, blood clots and more

Delaying second vaccine dose leaves cancer patients vulnerable to virus

For High-Risk Cancer Patients, Experts Consider Any Vaccine-Induced Covid-19 Protection Beneficial

How can I overcome my fear of needles to get a COVID-19 vaccination?

What Cancer Patients Most Need to Hear

Looking back on my almost decade long journey as a cancer patient, I’ve come to recognize that there are certain validations and reassurances that I wish to receive. I’ve also discovered that there are some fundamental psychological and emotional needs that are common in people who are living with cancer. Here is a list of what I believe we long for from our friends, family and those closest to us 

We need you to reassure us that our cancer isn’t our fault.

It’s been well documented that many cancer survivors have feelings of shame or guilt, particularly around the notion that they may have played some part in causing their cancer. Moreover, people often subtly, or not so subtly, blame us for our disease. Friends, family members or strangers often do this unwittingly, in an attempt to rationalize a painful reality and to cope with it better themselves. 

There is a difference between taking responsibility for the consequences of our actions and feeling like we deserve to be blamed. It may be true in some cases that a patient’s lifestyle or health care choices increase the odds of getting cancer or contribute to cancer progression. No doubt in such circumstances changing certain behaviours may improve their health. However, allowing a cancer patient to absorb blame and feel shame will almost certainly make matters worse. Instead, it’s better if we do not let shame and guilt keep us from moving forward. Feelings of guilt should never stop a cancer patient form getting the support they need and deserve, or from living in a healthier way. 

One cancer survivor said in a Globe and Mail newspaper interview that he thought healthy people should never give cancer patients health advice. “There’s nothing worse than being sick and getting advice from the healthy, because it’s almost like insinuating you did something to make this happen to you,” he explained. I firmly agree with this statement, and I become extremely angry when someone who has never experienced cancer tells me how to live my life with the disease. I’ve decided shame and guilt are unnecessary burdens to carry. Indeed, from everything that’s known about the emotions and health, acceptance and forgiveness are what we need to cultivate and enhance healing, not self-condemnation and self-blame.

We need you to validate our emotions, especially the unpleasant ones.

In took a cancer diagnosis for me to finally realize how essential validation is for a person’s mental health, especially their self-esteem. To validate someone is to recognize or affirm their validity or worth or the worth of their feeling or opinions. To validate someone often means using both your words and actions to make them feel valued or worthwhile. 

You might want to begin by acknowledging that cancer can be a terrifying experience and a diagnosis of this disease is usually a turning point that will alter a person’s life forever. I hate when people try to deny this fact or minimize it by giving me false reassurance. The truth is I don’t know if I’m going to be fine, you don’t know I’m if going to be fine, even my oncologist doesn’t know for certain if I’m going to be fine. Instead, I feel comforted when people use phrases like “I believe in you.” or “I’m pulling for you.”

We need you to be specific when you offer us assistance. 

“Can I do anything to help you?” Your overall intentions for asking a cancer patient this question is likely noble and your heart is in the right place. However, the phrasing of this question is frequently too vague or broad. The person undergoing cancer treatment is probably too overwhelmed to think of something specific, furthermore they don’t want to feel like a burden. Instead, it’s recommended that you ask if you can perform some task in particular for the person. “May I pick up some groceries for you?” or “I’d like to make you dinner tomorrow night.” are good examples of things you might want to say. Even scheduling routine appointments is difficult for an individual facing surgery or chemotherapy, so it might also be fitting to take the initiative. Many of us facing cancer treatment would be delighted if you offered to make some telephone calls or send some e-mail messages.

We need you to acknowledge our losses. 

Sometimes I view my cancer diagnosis as a series of losses, for example I’ve been forced to abandon or reassess many of my long-term professional goals. I lost numerous clients when I was unable to work for approximately a year. By the time I had undergone several major surgeries and then struggled through chemotherapy treatment, I had realized how stressful, competitive and deadline oriented my field of freelance journalism can be. I had to make the decision to step back from the relentless demands of trying to do assignments all the time.

Allow us to cry, to feel numb, to be angry, or to feel however we’re feeling. These emotions hurt, but they are natural and normal. Grief is a person’s normal, healthy response to a loss. I’ve discovered firsthand that the loss that triggers grief isn’t always something physical. You can experience grief if you or a loved one are diagnosed with a major disease or face a serious illness. It’s common to grieve the future plans you had made, or the ways life will change. Remember there is no “right” way to grieve, everyone is different. Give us time to experience our loss in our own way. 

What 2020 Has Taught Me

This year’s global pandemic has taught me many valuable lessons, some of them I had previously learned by being a cancer patient but had almost forgotten. Ironically, I’ve found that cancer and a pandemic have much in common in terms of the emotional and psychological impact that they have on an individual. The world order has been shaken by this once in a century global crisis and I doubt that we will ever go back to the exact same existence that we knew before. People will divide their lives into before and after the pandemic like I now divide mine into before and after cancer. An article in the British newspaper The Guardian compared the COVID-19 pandemic to a magnifying glass, noting that it has illuminated deprivation, inequalities and political unrest, while reminding us of the power and beauty of nature and humanity.

Here are some of the issues that the pandemic has shed a light on for me:

We are surrounded by a materialistic and competitive culture. 

As I was forced to spend more time at home or in solitude due the pandemic restrictions, I was reminded of what is essential or important. Too many of us can’t imagine life without frequent trips to shopping malls and beauty salons, if we’re younger we don’t know what to do when our weekend isn’t spent going to night clubs and parties. Meanwhile, the pandemic has allowed some of us to regain focus on what really matters, things like our relationships, our sense of self, perhaps in the end our definitive contributions to this world.

The gap between Canada’s richest and poorest continues to widen. 

“There’s a convenient fiction perpetuated that Canada hasn’t experienced the great extreme inequalities of wealth at the top end that the United States has,” a report from Canadians for Tax Fairness said. “It’s true that our wealthiest don’t have fortunes at the same level as Jeff Bezos or Warren Buffett, but the number of Canadian billionaires has increased at a far faster rate than the number of American billionaires and their total wealth has also increased at a much faster rate.” The pandemic hasn’t stopped the wealthiest from growing their fortunes. The report found Canada’s 44 wealthiest people, all billionaires, grew their wealth by a total of $53 billion between April and October of 2020. 

The sick, elderly and disabled continue to be marginalized.

Figures compiled by the Canadian Institute for Health Information uncover the devastation of the pandemic on our most elderly and vulnerable citizens. During the first wave of the pandemic, more than 80 per cent of COVID-19 deaths in the country occurred in long-term care homes and retirement homes. During the second wave, seniors in nursing homes and residents of institutions once again bore the brunt of the pandemic. This was despite vows from federal and provincial governments to make improvements, changes aimed at preventing the second wave from ravaging long-term care facilities. Tragically the pandemic has revealed the systemic failures in how the world’s most developed countries choose to respond to aging, disability and the need for end of life care. 

The lowest paid people in the country are essential to its functioning.

As COVID-19 has invaded the country’s communities, there are many Canadians who cannot — must not — stay home and avoid it. Among them are the recognizable and well-paid heroes, the doctors, nurses and paramedics. These essential workers always have to be there in national or local emergencies, and they have risen to the call time and again. But in 2020, Canada’s essential workforce expanded its ranks. It now includes people who never expected to be on the front lines of a crisis, workers whose jobs have been traditionally invisible or undervalued. These truck drivers, grocery store clerks, cleaners, personal support workers and municipal workers had little time to prepare themselves for their newly dangerous roles. They entered the pandemic without masks, face shields or plexiglass barriers. Along with those in health care, they’ve had to learn on the job how to protect themselves from the virus. A lot of them have gotten sick. And yet, they show up day after day.

Science and medicine are the greatest wonders of our time.

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. Just one year ago, when the death toll from the coronavirus stood at one and neither it nor the disease it caused had a name, a team of Chinese scientists uploaded its genetic sequence to a public site. That kicked off the record-breaking rush to develop vaccines. It’s difficult to associate anything to do with this pandemic with good fortune, but the fact that the culprit was a coronavirus — one that was strikingly similar to others that had previously leapt from animals to people — meant scientists could quickly rejigger vaccine projects in the works for those. It was almost like swapping a blue Lego for a red one in their assemblies.

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.