by Jacqueline Chartier

We Can’t Pretend It Didn’t Happen

Covid was, and still is, a global tragedy – yet three years into this pandemic I rarely hear people discussing its lasting impact on humanity. It wasn’t long ago that the novel coronavirus and the threat that it posed consumed our daily newscasts, I watched as briefings from government officials occurred almost daily and we cheered for the doctors and nurses working to the point of exhaustion on the front lines. The most important question now is why aren’t we talking about it anymore?

On the surface many low risk and younger people have resumed their pre-pandemic lives. In the three years since COVID-19 was designated an emergency by the World Health Organization, workers have begun to go back to the office, public health restrictions have lifted and masks are no longer mandatory in most places. For many people there is relief and their lives are starting to resemble the pre-pandemic reality.

But in my opinion, there is now a collective sense of denial, a denying of the suffering that occurred and of the approximately 7 million lives that have been lost globally. At the beginning of the pandemic we were “all in this together” as we faced grief, fear and uncertainty. It was impossible to deny the crisis as we all watched the chaos unfold around us. Our work, health-care, education and economic systems, all of these vital systems we depend on, became destabilized.

I think most people are currently determined to put the trauma in the past and move on. It’s interesting to note that this burying of communal grief happened with Spanish flu, too: Laura Spinney’s book on the 1918 pandemic describes the “collective forgetting” and the absence of official memorials. It was, Spinney explains, remembered “personally, not collectively … as millions of discrete, private tragedies”. Nevertheless, the Spanish flu was as significant – if not more so – as two world wars in shaping the modern world. The 1918 pandemic is now recognized for disrupting, and often permanently altering, global politics— it also transformed race relations, family structures, and thinking across medicine, religion and the arts.

I see history repeating itself with our current pandemic—society in general is enormously reluctant to acknowledge the magnitude of what we’ve been through or to accept that it continues to affect us. Like many cancer survivors, I don’t have the luxury of living in denial, I worry that COVID-19 is still not considered endemic by the Word Health Organization and that I could be vulnerable if I catch the virus. Three years later I’m still not able to resume my pre-pandemic life, I don’t attend public activities without assessing my risk or taking precautions.

What I hope the future will bring.

Although vaccinations, treatments, and prior immunity have made COVID less dangerous for most people, there are still individuals who remain vulnerable, those most in danger are seniors or anyone with a chronic health condition. Ending the COVID-19 public health restrictions has actually made navigating life harder for various groups like cancer patients and the immunocompromised. To me it’s also unfair that most of the burden of COVID-19 advocacy has fallen to us—I’m proud of our small determined alliance that includes cancer patients, those with long covid and those who have lost family members.

In the future I want governments and elected officials to take more responsibility for advocating as they make COVID-19 mitigation a higher priority. Polls suggest that voters don’t particularly care about COVID-19 anymore, but it really needs to be science, not polls, that guides public health. As COVID restrictions were lifted and the pandemic was put on the back burner, in some cases the death toll rose. According to statistics released by Health Canada, 2022 proved to be the deadliest year of the COVID-19 pandemic in Canada. Almost 20,000 Canadians died from COVID-19, that’s close to a 30 per cent increase in fatalities compared to 2021.

I agree with scientific experts that the ability to control respiratory illnesses will be dependent on our ability to improve air quality. This includes measures such as CO2 monitors and air filtration devices. The airborne nature of COVID-19 is a fact not up for debate, the inability of our governments to state that categorically is, I would argue, politically based. Acknowledgement of that fact would make them culpable for their inaction on measures.

As a cancer survivor and someone who remains more vulnerable than most, I’m concerned that governments are gradually giving up their responsibility for protecting us from the virus. I worry that as the emergency winds down, it’s become more challenging to access medical services like free vaccines, COVID-19 tests, and telehealth care. In the United States there’s concern that in the future continued access to these COVID interventions might depend on the individual’s health insurance status.

Going forward, action must also be taken to address the millions of citizens who remain ill or disabled due to COVID, I notice a reluctance by officials to talk about the phenomenon of long covid—there is growing scientific evidence that some patients who have apparently recovered from the virus will face life-long health issues or chronic disabilities. Ultimately, there must be social, medical and financial supports made available to these unacknowledged victims of the pandemic. 

by Jacqueline Chartier

Cancer and Other Complications

As ovarian cancer invaded my body, at one point I was given no alternative other than to live without eating solid food for a month. Although this experience was eleven years ago, it will always remain one of the most vivid and horrible memories from my cancer treatment. Looking back, I’m rather proud of myself and the fact that I accomplished what was necessary to survive. In the end, I was capable of enduring something that not many other people have had to face.

How I came to require NPO (the medical abbreviation for nothing by mouth) on my chart for a month is a complicated story, but still a situation that many gynecologic cancer patients will understand. Bowel blockages occur at an alarming rate for people diagnosed with these cancers— although when I was an innocent newcomer to the realm of ovarian cancer, I still had little idea how common these obstructions are in patients with the disease.

Sometimes it’s directly due to a recurrence of the cancer and a new tumour is pressing on the bowel. In other cases, the explanation is severe scarring of the bowel due to surgery or other aggressive treatments; excessive scarring can lead to a life-threatening obstruction. The second scenario is what happened to me and prompted my medical team to take such drastic measures. At first, I was sent home following an emergency room visit, as they were able to stabilize me and my symptoms seemed to subside. However, within a matter of weeks I was hospitalized again and involved in what felt like a terrifying fight for my life. 

I’d never felt abdominal pain so severe or nausea so intense, every minute that passed seemed like an eternity that stretched on forever. I was informed by my doctors that they wished to address my bowel obstruction non-surgically if possible. I was also reassured that they were almost certain the cause of the obstruction was scarring and adhesion and not an advancement of my malignancy. In any case, I was aware that my condition was extremely serious—soon it became necessary for me to receive nutrition intravenously through a PICC line, or what is otherwise known as a peripherally inserted central catheter. 

At first my medical team chose to take a wait and see approach. Unfortunately, despite ongoing treatment there was no resolution to my problem. My bowel remained blocked, so I remained hospitalized and in a great deal of physical distress. First solid foods were removed from my diet, and then even liquids. Inevitably, my mental health and psychological well-being began to deteriorate as I agonized nonstop about my possible future. They finally made a decision to operate after my condition required them to insert an NG tube one evening. I’ll always remember the pain of having the tube inserted and then the humiliation of having the brown liquid contents of my stomach gradually pumped out. 

I was eventually wheeled into an operating room where I underwent yet another major abdominal surgery, this time to correct my bowel obstruction. The procedure went well, from what I understand a couple of bowel resections were necessary to repair the scarring and adhesion that had developed. Upon waking in the recovery room, I was delighted to learn that they didn’t have to perform an ostomy. Still my recuperation was long and difficult and for several months I was on a low fibre diet.

Today I’m fully recovered and have so few problems with eating or digestion that sometimes I find it hard to believe this terrifying nightmare ever happened. Years after my ordeal I’m grateful that my ovarian cancer continues to stay in remission, I’m just as thankful for the fact that I’m now able to consume a normal diet and enjoy the many pleasures of eating. I become frustrated when I look around me and I witness people who don’t realize how important it is to eat properly—I see so many individuals who rush through meals without a second thought or don’t take time to prepare them. “Oh, I’m too busy to cook,” they argue. “With my work schedule and social obligations, who has time to prepare a meal from scratch?”

I would argue back that making time should be a priority—self-care and proper nutrition are essential for your long-term health and can’t be pushed aside without eventually facing the consequences. Ultimately you might discover, as I have, that cooking and dining are two of life’s greatest pleasures. Learning to cook can be enjoyable, and the shared experience of savouring a meal with friends or loved ones considerably enhances your quality of life. As for me, I’m determined that even if my cancer returns, I’ll never allow it to destroy me relationship with food.

by Jacqueline Chartier

How to Embrace a New Year 

I’m not the type of person who makes New Year’s resolutions, and my reluctance has been even more apparent since my cancer diagnosis. However, I still view the beginning of each year as a unique opportunity. The annual holiday season and the beginning of another year can be a crucial time to take stock of what’s truly important in your life. If living with cancer and navigating through a global pandemic have taught me anything, it’s that I can’t take hearth or wellness for granted. I’ve ultimately learned to make my physical and mental health a priority, I recognize that it’s okay to focus on myself rather than always trying to please the people around me.

Here is my advice for other cancer patients as we enter 2023.

  • Have some sort of plan for 2023, even if your immediate goals seem relatively small to you in the grand scheme of things. If you’re undergoing cancer treatment, or currently recovering from surgery or chemotherapy, planning an entire year will be extremely daunting. I believe the underlying problem is that when bad things happen that we can’t control, we tend to focus on all the things we can’t change. Try to focus on what you can control; what can you do to help yourself (or someone else) this year? For example, you could join a new support group in 2023, start a new hobby or plan to become a volunteer at your local cancer centre.
  • Always try to remain hopeful even if the present appears bleak. Sometimes I remember the words of Maya Angelou (1928-2014) the American author, screenwriter, poet and civil rights activist. She said, “I can be changed by what happens to me. But I refuse to be reduced by it.” Challenges like cancer happen in life, and there is no denying the fact that a cancer diagnosis can radically alter our path or change the life we might have lived. But no matter our circumstances as cancer survivors, we can refuse to be reduced, or made less, by them.
Photo by Andrea Piacquadio
  • Establish your own priorities and don’t let other people set your agenda. For me one of the worst things about having cancer is the unsolicited advice I receive from family, friends, and sometimes even strangers. I’ve certainly felt high levels of frustration as people try to inform me how to live my life or deal with my disease. Like most cancer patients I was particularly vulnerable to the influence of these pundits in the months following my diagnosis. 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 self-serving bias?
  • Know who you want in your life and don’t be afraid to establish personal boundaries. Many psychologists argue that the most important choice you’ll ever make in life is the people you surround yourself with. Since my cancer diagnosis I’ve basically developed zero tolerance for having toxic people in my life. I’ve also become more sensitive to the characteristics of harmful people and how they mistreat those around them. I now choose to avoid such individuals whenever possible, it’s been said that “You can’t change the people around you, but you can change the people around you.” Meaning, we can’t force others to change, but we can surround ourselves with more supportive relationships.
  • Love yourself and remember that you are worthy. Like many people, I’m often my own worst critic, I sometimes overlook the fact that in order to be respected and loved by others I must first learn to respect and love myself. The next time you believe that you’re a failure or not worthy, consider one important question. If your best friend or loved one was having the same negative thought as you, what would you tell them? Try applying this gentle guidance to yourself. Most of all, acknowledge how strong you are to have made it here. You are important, you are brave, and you are resilient.
by Jacqueline Chartier

Reading Through Cancer

Photo by Ivo Rainha

With a bustling holiday season and another long winter both nearly upon us, I’ve decided to devote this post to the theme of literature and reading. For me books are like wonderful companions that help me through the dark, cold months. In addition, I often enjoy giving them as gifts to some of the people who are closest to me. 

While I’ve always loved reading, I never expected how much this passion would guide me through my cancer journey. In times of crisis books have helped me to feel more connected to other cancer survivors and to other human beings in general. The American literary icon James Baldwin put his feelings this way.

“You think your pain and your heartbreak are unprecedented in the history of the world, but then you read. It was books that taught me that the things that tormented me most were the very things that connected me with all the people who were alive, who had ever been alive.” 

Here are a few of the books (both fiction and nonfiction) that have helped sustain me when I felt the fear, uncertainty or loneliness of living with an ovarian cancer diagnosis.

Full Catastrophe Living by Jon Kabat-Zinn

Originally published in 1990, this book has been through numerous editions, the author explores the role of mindfulness and how its practice can improve the quality of life for people with chronic illnesses. Jon Kabat-Zinn describes in detail the techniques he has used successfully with patients in the Stress Reduction Clinic at the University of Massachusetts Medical Centre. Learning to listen to your own body is vital, above all I came away from this book with an improved awareness of how my body responds to the emotional and psychological stress of having cancer. I’ve also acquired new methods to effectively reduce or manage the negative impact of such everyday stress.

Full Catastrophe Living is over 400 pages and covers a lot of territory, including the basics of both meditation and yoga. I can accept that some readers might be turned off by the length of this volume or by its allusions to certain tenants of Buddhism. Mindfulness mediation is frequently taught and practiced within the context of Buddhism, however it has been argued that its essence is universal. For this reason, it can be learned and practiced by cancer patients without appealing to Asian culture or Buddhist authority to enrich it or authenticate it. Advocates contend that mindfulness stands on its own as a powerful vehicle for self-understanding and healing.

When Breath Becomes Air by Paul Kalanithi 

I highly recommend reading Paul Kalanithi’s bestseller, When Breath Becomes Air, especially if you’re dealing with a cancer diagnosis. At the age of 36, on the verge of completing a decade’s training as a neurosurgeon, Kalanithi was diagnosed with inoperable lung cancer. One day he was a doctor treating the dying, the next he was a patient struggling to live. When Breath Becomes Air is a life-affirming reflection on facing our mortality and on the relationship between doctor and patient. I was often mesmerized by the author’s writing skills, almost a little envious that he could be both a talented physician and such an outstanding creator of non-fiction. There are passages in the book where Kalanithi perfectly captures what it’s like to suddenly be living with cancer.

“In a way though, the certainty of death was easier than this uncertain life. The path forward would seem obvious if only I knew how many months or years I had left. Tell me three months, I’d spend time with family. Tell me one year, I’d have a plan (write the book). Give me 10 years, I’d get back to treating diseases. The pedestrian truth that you live one day at a time didn’t help. What was I supposed to do with that day?”

Paul Kalanithi When Breath Becomes Air

The Emperor of All Maladies by Siddhartha Mukherjee 

After my cancer diagnosis I started to think quite a lot about the history of cancer, I realize that I owe my life to the oncologists and patients that have come before me. I developed an even greater fascination this topic while watching the PBS miniseries Cancer: The Emperor of All Maladies. The creators of this ground-breaking television documentary based their project on a work of non-fiction by renowned oncologist and award-winning journalist Siddhartha Mukherjee. Both the PBS documentary and Mukherjee’s Pulitzer Prize winning volume have one overriding theme. They bring to light that our current generation’s experience with cancer represents only a momentary chapter in an epic battle spanning thousands of years.

Maya Angelou The Complete Collected Poems

Maya Angelou (1928-2014) was an American author, screenwriter, poet and civil rights activist. I’ve always been an avid fan of her literature, now that I’m a cancer survivor I often find strength and inspiration through her words. During my stay on the cancer ward I kept a copy of Angelou’s complete poems by my bedside. My favourites include Still I Rise and Phenomenal Woman, at the lowest point in my life I would read passages whenever I was able to sit up in bed.

You may shoot me with your words,
You may cut me with your eyes,
You may kill me with your hatefulness,
But still, like air, I’ll rise.

Pretty women wonder where my secret lies.
I’m not cute or built to suit a fashion model’s size   
But when I start to tell them,
They think I’m telling lies.
I say,
It’s in the reach of my arms,
The span of my hips,   
The stride of my step,   
The curl of my lips.   
I’m a woman
Phenomenally.
Phenomenal woman,   
That’s me.

by Jacqueline Chartier

Give Us Some Respect

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

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

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

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

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

Place us at the centre of a circle of support.

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

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

Don’t come to us with unsolicited advice.

The truth I’ve come to accept is that I didn’t cause my cancer and I don’t have the ability to simply will it away. However, when my ovarian cancer was initially diagnosed, I was more desperate and naïve, more willing to imagine these things were still under my control.  I was hospitalized for over a month and a half at Calgary’s Foothills Medical Centre. When I looked into some of the other patients’ eyes, I could see them begging for a future, and I understood that they would do almost anything for the gift of just a few more months in this world. 

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

by Jacqueline Chartier

“The Thing Is” When You Have Cancer

The Thing Is

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.

by Jacqueline Chartier

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 U.S. are sounding the alarm that after two years of COVID-19, our hospitals have never been worse off. This incredibly disturbing quote describing 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 only a generation. 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.

by Jacqueline Chartier

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
  • Stand By Me
    Tracy Chapman – Greatest Hits
  • Imagine
    John Lennon – Imagine
  • River
    Joni Mitchell – Hits
  • Fast Car
    Tracy Chapman – Greatest Hits
  • Both Sides Now
    Joni Mitchell – Hits
  • What a Wonderful World
    Louis Armstrong – The Ultimate Collection 
  • Over the Rainbow / What a Wonderful World
    Israel Kamakawiwo’ole – Facing Future 

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.

by Jacqueline Chartier

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.

by Jacqueline Chartier

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.