Tag / cancer survivorship

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

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 Cancer Playlist

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

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

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

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

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

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

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

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

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

Sometimes Life is Beautiful

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

Experience Beauty Through Art

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

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

Experience Beauty Through Nature

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

About a decade ago, soon after I was diagnosed with cancer, I discovered a meditation technique called mindfulness. Being outdoors often helps me be mindful, I’m able to relax and to more fully appreciate the unique moment that I’m living in. Jon Kabat-Zinn pioneered using this method with cancer patients and other groups battling chronic pain or illness at the University of Massachusetts Medical School. Kabat-Zinn describes mindfulness as follows:

“Mindfulness means paying attention in a particular way: on purpose, in the present moment, and non-judgmentally. This kind of attention nurtures greater awareness, clarity, and acceptance of the present-moment reality. It wakes us up to the fact that our lives unfold only in moments If we are not fully present for many of those moments, we may not only miss what is most valuable in our lives but also fail to realize the richness and the depth of our possibilities for growth and transformation.”

Find Beauty and Strength Within

When you are diagnosed with cancer, you’ll almost certainly have moments when you sense that your world is spinning violently out of control. The fundamental paradox for me is that I’m often in situations where I feel a sense of power, combined with courage and self-assurance. It’s as if I’m standing in life’s Category 5 hurricane and remaining resolute, steadfast and unbroken. I don’t aspire to become a legend like Terry Fox or to be anything resembling a saint or a cancer hero. But still, I’ve discovered inner qualities and personal strengths I never appreciated or properly acknowledged in myself. Subjected to the ultimate test, I’ve sometimes shocked myself with my capacity to overcome adversity and to confront physical pain and suffering.

Sometimes I wish that a magical force or mystic healer could transport me back to before I had cancer, but then I think that I’ve come too far and acquired too much. In the decade since my cancer diagnosis, I’ve realized how fortunate I am. I’ve been reminded that often, in our worst challenges come valuable lessons. Through facing the terrible realities of my disease, I’ve learned to be more conscious of living in the moment. I’ve learned it’s all right to pause in our hyper-accelerated culture, I’m allowed to take a break when I’m feeling worn-out. My new normal has also taught me I don’t need material things to make me happy and that family and friends are to be treasured. But perhaps the most valuable lesson I’ve acquired so far during my cancer journey is that life is all too fleeting.

by Jacqueline Chartier

COVID’s Second Bitter Winter

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

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

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

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

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

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

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

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

by Jacqueline Chartier

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.

by Jacqueline Chartier

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.