to love life, to love it even when you have no stomach for it and everything you’ve held dear crumbles like burnt paper in your hands, your throat filled with the silt of it. When grief sits with you, its tropical heat thickening the air, heavy as water more fit for gills than lungs; when grief weights you like your own flesh only more of it, an obesity of grief, you think, How can a body withstand this? Then you hold life like a face between your palms, a plain face, no charming smile, no violet eyes, and you say, yes, I will take you I will love you, again.
Ellen Bass
Poetry for me is often healing and cathartic. I recently encountered The Thing Is when it appeared in one of my social media feeds. The American poet Ellen Bass wrote it when she was in deep grief and it certainly resonated with me. When I researched the author, I learned that Bass has published nine poetry collections, the most recent of which is Indigo (Copper Canyon Press, 2020). In addition to her poetry, she has written several works of nonfiction, including The Courage to Heal: A Guide for Women Survivors of Child Sexual Abuse.
After reading The Thing Is, I felt as though the words had been intended for people like cancer survivors and their families. For those who haven’t actually lost something they cherish or someone dear it’s almost impossible to appreciate the poem or understand its meaning. However, for those of us who have felt the darkness of grief or had to abandon the lives we knew before cancer, we understand the poem completely. We get it. We not only get it, we’ve lived it.
As an ovarian cancer survivor, my life is forever altered, and it will be until the day I die. I’ve suffered, acquired a much deeper awareness of grief and pain, but I manage to still love life. Even in the darkest moments, there are still things to love; the majestic mountains on Calgary’s horizon, the green grass, the brilliant orange poppies that bloom in my backyard, my cat rubbing up against my leg while gently purring. Every season, every day, holds beauty waiting to be discovered. I know. my family, friends and health care team would all want me to learn to love life fully again. It’s challenging, often still a work in progress, but I continue to persevere.
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.
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.
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.
One of my New Year’s resolutions for 2014 is to more effectively manage the guilt or shame that I sometimes feel concerning my cancer. It seems unfair considering all the other unpleasant emotions that cancer triggers, but guilt in its various forms is a constant enemy waiting to attack cancer survivors and their caregivers.
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. Certain cancers, for example lung cancer, have especially strong stigmas attached to them in this regard. “He smoked heavily, so what did he expect?” When it comes to cancer we often subtly, or not so subtly, blame the person for his or her 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. Human psychology being what it is, whenever we can construct an explanation for something, it makes us feel a little better. Experts, such as renowned scientist and author Jon Kabat-Zinn, emphasize that blame only robs an individual with cancer of the present by directing their attention on the past—it undermines them when they most need to focus their energies and face the reality of having a life-threatening disease.
While gynecological cancers don’t involve the same degree of stigma as lung cancer or some other forms of the disease, I’ve still experienced times when I’ve felt that I might be to blame for my illness. Leading up to my diagnosis, I was having symptoms that could indicate uterine and/or ovarian cancer and my doctor recommended surgery. At first I was somewhat hesitant due to fear and denial of my situation. I had never been hospitalized or had any type of surgery before, now I was being informed that I should have a total abdominal hysterectomy as well as the removal of my right ovary. My gynecologist had to “twist my arm” to a certain degree. I ultimately consented to the procedure when I realized that it was in my best interest. What would the outcome have been if I had chosen to have the operation sooner? Would my endometrial cancer be less advanced, lower than the stage III that I am currently diagnosed with? Would it have had time to spread to my lymph nodes and affect my right ovary?
There is no way to determine these things for certain, but I do regret my hesitancy to take action. Everyone has done things that they wish they hadn’t. My argument is that there is a difference between taking responsibility for the consequences of actions and feeling like you deserve to be blamed. It may be true in some cases that our 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 your health. However, allowing a patient to absorb blame and feel shame will almost certainly make matters worse. Instead, it’s better for cancer survivors not to let shame and guilt keep them from moving forward, getting the support they need and deserve, and living in a healthier way. Shame and guilt are unnecessary burdens to carry. 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.
This having been said, there are numerous other ways in which guilt manifests itself in the lives of cancer survivors. Guilt takes sinister forms for us, like feeling shame for the envy we feel about those who are in good health; feeling guilty about the disproportionate amount of attention we receive, and even guilt about surviving cancer when so many others have not. I remember feeling guilt-ridden when I was undergoing cancer treatment and unforeseen complications occurred. My condition ultimately caused me to spend over a month and a half in Calgary’s Foothills Medical Centre. As my primary caregiver, my mother had her life completely turned upside down. Although she is semi-retired, she took a leave of absence from her part-time job and rearranged her daily schedule to visit me. My brother also took some hours off work at the law firm where he practices. Suleika Jaouad, a young American fighting leukemia, describes herself in similar circumstances:
“I feel guilty when I start feeling sick or get a fever. I want to apologize, for I know I will soon make the life of my loved ones hell. My mother will have to drive four hours in the middle of the night to take me to the hospital in New York City. Family will have to take sick days from work. After long days at the office, my boyfriend will spend night after night sleeping between two hospital chairs. My father will “hold down the fort” at home (this translates to lonely nights spent worrying by himself and feeling very far away from my hospital room).”
Finally, as I’ve alluded to, some cancer patients experience the discomfort of what is termed survivor guilt. I’m aware through various sources that I’ve outlived several of my former cancer ward roommates. Perhaps it’s only human nature to occasionally wonder why I’ve been fortunate enough to achieve remission, when so many women diagnosed with my form of cancer have lost their agonizing battle.
For more information regarding guilt and cancer or to seek professional advice contact the psychosocial oncology department at your regional cancer centre or reach out to other cancer resources in your community.
The Teal Diaries: An Ovarian Cancer Journey 