Author / Jacqueline Chartier

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Posts by Jacqueline Chartier

I'm a semi-retired freelance writer and journalist. I write on a variety of topics including history and heritage, arts and culture, the Canadian military and health care. In November 2011, I was diagnosed with cancer. My blog The Teal Diaries explores what it’s like to be diagnosed with ovarian cancer and to courageously face this life-threatening disease one day at a time. It offers readers an upfront and personal account of my ongoing nightmare and celebrates over a decade of survivorship. More importantly, my mandate is to foster support for all those who are living with ovarian cancer and the approximately 3,000 Canadian women who will be newly diagnosed this year. My goal is to raise public awareness of this devastating disease and to promote early detection.
by Jacqueline Chartier

Confronting Alberta’s Oncology Crisis

As a cancer survivor, who may face a recurrence at some point, I’m worried and outraged as I observe the looming cancer care crisis in Alberta. The Alberta Medical Association is warning that if the provincial government doesn’t take appropriate action soon, more patients will face delayed treatment or even die unnecessarily. 

In a recent interview AMA president Dr. Paul Parks emphasized that wait times in the province have increased, delaying treatment. “Sometimes cancers that could have been curable are no longer curable because of the delays” he said. “They are seeing cases and examples where, because of delays cancers that were localized and easily treatable initially sometimes spread and it becomes not curable, and ultimately some people are succumbing because of delays and that’s why we’re raising the alarm.”

Worst of all, the Alberta government doesn’t appear to be listening to the urgent pleas of health care professionals or patients. I’m disheartened by Alberta’s UCP government and their attitude. In my opinion there is an appalling lack of compassion or empathy that’s being demonstrated. Two years ago, before she was our provincial leader, premier Danielle Smith made a shocking comment in which she essentially blamed cancer patients for their condition.

Smith’s now infamous comment was made during a podcast with naturopathic doctor Dr. Christine Perkins. The two were discussing healthcare and their shared belief that there’s a need for both mainstream and naturopathic medicines.

“Once you’ve arrived and got stage four cancer and there’s radiation and surgery and chemotherapy, that is incredibly expensive intervention — not just for the system, but also expensive in the toll it takes on the body,” said Smith. “But, when you think everything that built up before you got to stage four and that diagnosis, that’s completely within your control and there’s something you can do about that that is different.”

It’s evident that the ideology of our premier and her government regarding healthcare and cancer treatment only compound the serious problems we’re already facing. To me this is completely unacceptable. In the case of cancer care, delays of even a few weeks can limit the range of treatment options. A patient who might have been a candidate for an exciting new treatment that could cure the disease may no longer be eligible. Instead, they face longer treatments, poorer outcomes or, even worse, may only be palliative.

The reasons for the crisis in cancer care are complex and they aren’t being adequately addressed by those in power. One cause behind the crisis can be explained through simple math, demand is outpacing supply. Official statistics indicate that cancer rates in the province are outpacing population growth. Alberta’s population is increasing rapidly, and more patients equal a need for more care. Alberta’s population is also aging, and older patients have a much higher incidence of cancer. 

Another important concern is that oncology is always evolving. Advancement in the field of oncology and better cancer treatment are things to strive for, but it can sometimes present a paradox. For example, technological innovation like genomic therapy can now save patients who would not have survived short years ago. This is wonderful news, but it adds a new population of complex patients who need special care after treatment, often over a period of years.

According to the AMA there are several issues that must be addressed related to cancer care. First, Albertans are facing reduced access to family doctors or generalist care. Too many patients at risk of cancer lack a family doctor or a consistent primary care provider. Add to this the pandemic disruption to screening and preventive measures. Today patients show up in emergency departments with advanced cancers that could have been detected and treated earlier. The number of new cancers being diagnosed in overcrowded emergency departments, which are simply not resourced for this type of care, has never been higher.

Furthermore, the organization overseeing Alberta’s doctors says the government is failing in its obligation to both recruit and retain oncologists There’s an urgent need for more oncologists as we face a severe shortage. Alberta has approximately the same number of cancer specialists in the province as we did 10 years ago, and the system is now experiencing acute strain.

All oncologists in Alberta are employees or contractors, meaning there can be no recruitment if spaces are not established first by the funder. An oncologist cannot just decide to move to Alberta and a community cannot simply hire one. Unfortunately, despite the increasing need, new oncology positions have not been created to keep pace. Calgary is supposed to open a new state-of-the-art cancer centre this fall. But I worry that if it opens on schedule The Arthur Child Cancer Centre might lack enough specialists to provide premium care to patients.

Obviously, our province must do everything it can to hang on to the oncologists we have today. Then, assuming more spaces become available, we must begin to recruit. The AMA says we need to deal with the problem that Alberta is not currently competitive with other provinces in retaining or attracting oncologists. We have fallen behind. Few new Alberta-trained graduate oncologists have stayed in the province in recent years. Meanwhile, other provinces like BC and Ontario are actively hiring as many cancer specialists as they can. The Royal College of Physicians and Surgeons of Canada will produce only 25 new oncologists for all of Canada this year. Alberta alone could use two-to-three times that many today.

by Jacqueline Chartier

Now and Then: The Rapid Evolution of Cancer Care

I underwent several major surgeries as well as chemotherapy for my ovarian cancer approximately a decade ago, meanwhile I watch in amazement as I observe many of the new options that are available for patients today. In my opinion the speed at which cancer treatment and patient care have evolved is truly amazing. 

One perfect example is that today many patients who are diagnosed with cancer are assigned a nurse navigator through their cancer centre. When I was going through treatment, I didn’t have access to one because at that time nurse navigators were still extremely rare. I believe that if I’d been matched with a nurse to work with me one on one, it would have made my adjustment to becoming a cancer patient less stressful and a great deal easier.

What exactly is a nurse navigator and how do they assist you when you’re going through one of the most confusing and turbulent periods of your life? Nurse navigators are now commonly employed in oncology to help patients through their cancer diagnosis and individualized care plan. An oncology nurse navigator (ONN) is usually a professional registered nurse with oncology-specific clinical knowledge. Their job is to offer individualized assistance to patients, families, and caregivers. Essentially a navigator is there to help you overcome healthcare system barriers. In essence your navigator is your advocate for care—from initial consultation right through treatment. 

The CBC radio show White Coat Black Art recently covered the topic of nurse navigators. The first cancer navigation program in Canada was created in 2002 in Nova Scotia, followed by Quebec launching a similar program in 2005. Most provinces and territories have since implemented different forms of a cancer navigation program. Programs between provinces differ — from who is covered, to what a navigator helps with. Each health authority has adopted a distinct strategy and customized the program for their region.

Lorie Kielley is a registered nurse who works as a cancer patient navigator with Newfoundland and Labrador Health Services. “Having someone to reach out to, to guide them through what to expect, what supports are available to them and guide them through the whole process, is definitely something that can at least take a little bit of stress out of the experience,” Kielley told White Coat. 

I’m grateful that if I must go through cancer treatment again, I’ll be much more likely to reap the benefits of my own personal nurse navigator. There are other important innovations that I’m aware of at my cancer centre —for one thing, Enhanced Recovery After Surgery (ERAS) frequently makes surgery less difficult for patients. Drawing from best practices and evidence from around the world, this new approach improves patient care related to nutrition, mobility after surgery, fluid management, anesthesia, and pain control. 

When I underwent surgery there were some standard protocols that I found hard to bear and that probably made my body even more weak when I was struggling to recover. First, I was required to fast for 48 hours and prepare my bowel by drinking noxious medications, then I was taken shivering into a cold operating room. This isn’t the case with some gynecologic cancer patients today, some women at my cancer centre are able to participate in ERAS. On the day of their surgery, they’re usually allowed to drink or eat until just a few hours before their procedure and they’re kept warm and comfortable, even after they enter the operating room.

Instead of rigorous fasting and becoming stressed out in the days or weeks leading up to my surgery ERAS would recommend enhanced nutrition and physical activity to make sure that I was in optimum condition for a major surgical procedure. This new method makes patients part of the team by involving them in preparation for their surgery and post-operative recovery. The main objective is to help patients stay strong, improve outcomes, and reduce complications.

ERAS guidelines consist of about 20 different practices before, during and after surgery. They include keeping patients well-nourished, giving them anti-coagulants and pre-operative antibiotics, avoiding cold in the operating room, avoiding the use of long-acting sedatives, using non-opioid pain medications (where alternatives are medically appropriate), using anti-nauseants, and encouraging patients to move as soon as possible after surgery.

Meanwhile, my standard surgical recovery was almost gruelling, I needed to be hospitalized for 10 days before I was finally released. The encouraging news is that at my cancer centre there are now some patients who would normally spend about 10 days recovering from surgery going home in only five days because of ERAS. “Everything just went so smoothly, there was no reason for me to hang around,” one patient recalls. “I felt great — the nausea was well-controlled, the pain was well-controlled, and I was up and walking. It was incredible — you don’t want to stay in hospital any longer than you need to.”

Despite recent progress, I still try to be realistic about how far treatment for ovarian cancer has come, I know there’s still an extremely long way to go in the war against this insidious disease. Ovarian cancer patients are having better outcomes because they have more treatment options, but the cancer still frustrates doctors and their patients because it often remains undetected until it has spread. Oncologists admit that they are facing enormous challenges. While surgical advances and new treatment approvals have improved the outlook for ovarian cancer patients, late diagnosis and tumour resistance remain as the two most significant barriers in overcoming the disease.

by Jacqueline Chartier

A Cancer Patient’s Guide to That Awkward Age

A cancer patient’s age can influence their overall prognosis, but it’s also known to affect many diverse aspects of their cancer journey. I was just 46 when I was diagnosed with both uterine and ovarian cancer, however the median age of diagnosis in Canada is about 63. I now realize that age is one important factor in how the medical community perceives your risk.

Obviously my gynecologist was concerned when he diagnosed me with endometriosis and a medium sized mass on my right ovary. He wanted to perform surgery, but he still believed the likelihood was for my condition to be benign. About a week following my surgery, the pathology report ultimately revealed the presence of adenocarcinoma in both my uterus and ovary. Meanwhile, my gynecologist acknowledged that he was shocked because the disease is relatively infrequent in women under fifty. 

On my first few visits to the cancer centre, I became even more acutely aware of my age and its implications. Now it was starting to feel like both a blessing and a curse, an advantage, and a disadvantage. A cancer diagnosis has the power to impact nearly every aspect of your life; you feel it physically, emotionally, socially, and financially. Studies have indicated that younger patients usually have a physical advantage, but they may possibly experience a disadvantage in the other areas.

When I attended my appointments with my oncologist at the Tom Baker Cancer Centre, I noticed that I was surrounded by women in my own fortysomething age range. However, many of them were not patients themselves, they were there most often as caregivers and were accompanying a cancer stricken elderly parent. Sometimes as I walked in with my support person, my healthy and totally independent 72-year-old mother, I would feel bitter and confused at our obvious role reversal.

Even so, a part of me remained grateful that I was younger than most patients. I was terrified because I realized that ovarian cancer has a dismal five-year survival rate, but at the same time I was also aware that a woman’s age plus the stage of her cancer are usually the two most significant factors in determining her prognosis. I quickly discovered that oncologists will perhaps approve different types of treatment depending on a patient’s age. They are sometimes able to approach cancer treatment more aggressively if, for example, a patient is 46 rather than 66.

Following my first examination at the Tom Baker Cancer Centre, my mother and I were ushered into one of the conference rooms to meet with my gynecologic oncologist, he had with him several junior doctors and residents. The seriousness of my situation began to register, as I looked across the table at four of five white-coated medical professionals. Suddenly I realized that my cancer care team had made a decision and they were going to go all in.

Sure enough, they explained that they wanted me to undergo surgery as soon as possible. This news was overwhelming, especially since I was still recovering from a total abdominal hysterectomy that I had undergone three weeks earlier. “I just had a hysterectomy and now I’m dying of cancer,” I tearfully blurted out. “You’re not dying, I’ll inform you if you are dying,” a firm voice immediately responded. These rational words jolted me back to reality, and before I left, I signed a consent form for a laparotomy—a specialized procedure in which abdominal organs are removed, biopsied or repaired and a definitive diagnosis can be made.

At our meeting my oncologist had been unambiguous that his treatment goal was a “cure” or full remission. Meanwhile, the most important thing I could do was to have faith— if the medical professionals believed I could become cancer free then this was an outcome worth striving for. For a year I endured what seemed like an endless hell of major abdominal surgeries and chemotherapy, at one point I even required additional surgery to repair a bowel obstruction. My treatments and hospitalizations were so rigorous that I don’t know if I could withstand them again now. Looking back a decade later, I now credit my relative youth as a major advantage in the agonizing struggle to destroy my cancer.

Even so, I continue to believe that I’m at a kind of messy middle range for cancer patients. In many instances, people in their forties or fifties experience the financial hardship or toxicity of a cancer diagnosis more severely. Those who are younger don’t have as many financial responsibilities and are usually able to rely on their parents or others for financial support. Obviously, most cancer patients in my age group are at the stage of their lives when they’re in the workforce and usually mid to late career. They’re not retired so they mourn the loss of income and the loss of social status if they must exit the workforce or take long-term leave. 

Finally, I’ve observed a gap in psychosocial support for this age range. There are a fair number of young adult cancer support groups for patients under 35, and there is often specialized support designed for seniors over 65. Those of us who are middle-aged when cancer strikes tend to be left more on our own, especially when active treatment is finished, and we are considered cancer-free or in remission. As someone with first-hand experience I know that cancer survivorship is a lifelong journey that doesn’t stop when surgery or chemotherapy treatment is over.

by Jacqueline Chartier

The Unexpected Tranquility of Ovarian Cancer

When I was younger and healthier, I remember how much I was always in a hurry. I often filled my days with endless commitments, I would typically rush through my day with goals to achieve or promises to keep. Living with cancer has forced me to slow down, it’s taught me to appreciate the quiet, peaceful moments and the simple everyday routines that enrich my life.

Canadian singer-songwriter and author, Jann Arden, recently wrote about why she has chosen to slow down and take her life more unhurriedly. She once kept up a frenzied pace of tour dates and other music industry obligations. While Arden isn’t a cancer survivor, coping with middle age and then the death or her mother after a long battle with Alzheimer’s disease have had a significant impact.

“I never leap out of bed and shoot into the day like an arrow. I used to. I used to slam down an alarm and race into the day like I had to put out a fire, and the only thing on fire was me—and not in a good way. The race can make us sick. The race can make us lose sight of what’s important and valuable and worthwhile and sacred,” Arden wrote.

She maintains that one of the best things she ever did for herself was to reassess her frenzied lifestyle. “Believe it or not, I became much more productive. My work has become deeper and more fulfilling in every way. Don’t worry what anybody thinks if you don’t want to do something or can’t do something. We will all be dead in fifty years and honestly, it just doesn’t matter. Take time for yourself and you’ll be much more apt to take time for other people. People you enjoy. People you learn from. People that fill you up and cheer you on.”

I’m in agreement with Jann Arden that adventure in life can sometimes be quiet and slow. One’s personal journey doesn’t always have to be climbing mountains or jumping out of planes; some days adventure can be a deep conversation and a car ride out to the country. If you race blindly through life, you’ll miss the most important and pleasurable things.

It’s understandable that certain people would consider my life as a middle-aged cancer survivor extremely boring, but I’ve learned to embrace even the boring parts. Now that I’ve spent over a decade in remission, I don’t want to relive the “excitement” of surgery, chemotherapy, and regular appointments at the cancer centre. The poem Being Boring by Wendy Cope perfectly captures my complex array of emotions now that my life and cancer are stable.

Being Boring

‘May you live in interesting times.’ –Chinese curse

If you ask me ‘What’s new?’, I have nothing to say
Except that the garden is growing.
I had a slight cold but it’s better today.
I’m content with the way things are going.
Yes, he is the same as he usually is,
Still eating and sleeping and snoring.
I get on with my work. He gets on with his.
I know this is all very boring.

There was drama enough in my turbulent past:
Tears and passion–I’ve used up a tankful.
No news is good news, and long may it last.
If nothing much happens, I’m thankful.
A happier cabbage you never did see,
My vegetable spirits are soaring.
If you’re after excitement, steer well clear of me.
I want to go on being boring.

I don’t go to parties. Well, what are they for,
If you don’t need to find a new lover?
You drink and you listen and drink a bit more
And you take the next day to recover.
Someone to stay home with was all my desire
And, now that I’ve found a safe mooring,
I’ve just one ambition in life: I aspire
To go on and on being boring.

I can relate when Cope describes how she is content with a “boring” life and expresses that she dislikes anything which is out of the ordinary. I feel connected in the sense that this is essentially an autobiographical poem, indicating that the author is satisfied with an uncomplicated, peaceful life as opposed to one that is always beset with drama and turbulence.

by Jacqueline Chartier

Starting 2024 With Hope and Optimism

In my opinion living with cancer is one of the most difficult and brutal things that any person will ever have to face, to have cancer is to live moment by moment and it’s not always easy for us to look toward the future. Still, I feel I’m in a better situation than many because I’ve been in remission for eleven years. My long remission and the fact that my city, Calgary, Alberta, intends to open a new state-of-the-art cancer centre this year has me facing the New Year with hope and optimism.

The Arthur J.E. Child Comprehensive Cancer Centre

At some point in 2024 I’ll witness the grand opening of Canada’s largest and newest comprehensive cancer centre! I experienced how desperately we needed a new cancer centre when I was going through treatment. Our city’s existing Tom Baker Centre has been serving men and women diagnosed with cancer for approximately two generations now; it opened its doors over 40 years ago in the early 1980s. At the time, Albertan’s marveled at the spacious and innovative new facility. The building had been meticulously designed to provide cancer care for Calgary’s population and the rest of southern Alberta. Although the Baker Centre’s first doctors once pondered how exactly they’d fill all the new space available to them, I saw the present day oncologists, nurses and technicians grapple with cramped offices, crowded reception areas and patients lining the hallways waiting for treatment. 

An artist’s rendering of Calgary’s new Arthur Child Cancer Centre

When it opens later this year, it’s promised that the new Arthur J.E. Child Comprehensive Cancer Centre will engage patients as the focus of a multidisciplinary health system, we will have access to comprehensive cancer care services in a state-of-the-art facility. In fact, the extensive scope and integration of cancer care services at Calgary’s new hospital will make it one of the most comprehensive cancer centres in the world. Operationally, the Arthur Child will include both inpatient and outpatient services. Services based on clinical priorities are to include:

  • more than 100 patient exam rooms
  • 160 inpatient unit beds
  • more than 100 chemotherapy chairs
  • increased space for clinical trials
  • 12 radiation vaults, with three more shelled in for future growth
  • new on-site underground parking with 1,650 stalls.
  • numerous outpatient cancer clinics
  • clinical and operational support services and research laboratories

Important Oncology Breakthroughs

There’s no doubt that COVID-19 caused a huge backlog in cancer diagnosis and treatment. However, there is still plenty of positive news. Despite the recent global pandemic, medical advances are still accelerating the battle against cancer. Here are a few of the exciting recent developments in the field of oncology!

The seven-minute cancer treatment

The National Health Service (NHS) in England is to be the first in the world to make use of a cancer treatment injection. It takes just seven minutes to administer, rather than the current time of up to an hour to have the same drug via intravenous infusion. This will not only speed up the treatment process for patients, but also free up time for medical professionals. The drug, Atezolizumab or Tecentriq, treats cancers including lung and breast, and it’s expected most of the 3,600 NHS patients in England currently receiving it intravenously will now switch to the new injection.

Precision oncology

Precision oncology, defined as molecular profiling of tumors to identify targetable alterations, is rapidly developing and has entered the mainstream of clinical practice. Precision oncology involves studying the genetic makeup and molecular characteristics of cancer tumours in individual patients. The precision oncology approach identifies changes in cells that might be causing the cancer to grow and spread. Personalized treatments can then be developed. Because precision oncology treatments are targeted – as opposed to general treatments like chemotherapy – it can mean less harm to healthy cells and fewer side effects as a result.

Liquid and synthetic biopsies 

Biopsies are the main way doctors diagnose cancer – but the process is invasive and involves removing a section of tissue from the body, sometimes surgically, so it can be examined in a laboratory. Liquid biopsies are an easier and less invasive solution where blood samples can be tested for signs of cancer. Synthetic biopsies are another innovation that can force cancer cells to reveal themselves during the earliest stages of the disease.

Car-T-cell therapy

A treatment that makes immune cells hunt down and kill cancer cells was recently declared a success for leukaemia patients. The treatment, called CAR-T-cell therapy, involves removing and genetically altering immune cells, called T cells, from cancer patients. The altered cells then produce proteins called chimeric antigen receptors (CARs). These recognize and can destroy cancer cells. In the journal Nature, scientists at the University of Pennsylvania announced thattwo of the first people treated with Car-T-cell therapy were still in remission 12 years on.

by Jacqueline Chartier

I Asked My Body What She Needed

In my introductory blog post, published more than ten years ago, I familiarized readers with the concept of “embracing the new pretty” in the wake of my uterine and ovarian cancer. Basically, this involved trying to come to terms with the physical changes to my body due to cancer treatments, an issue that almost all women who have had a major cancer diagnosis experience. For many survivors the changes can be profound and emotionally devastating. In the event of uterine or ovarian cancer, transformations to a woman’s body will typically include a permanently and severely scarred abdomen as well as the removal of her internal reproductive organs. Meanwhile, breast cancer patients face mastectomies, biopsies or lumpectomies. To me embracing the new pretty involves accepting these physical changes and also questioning our culture’s popular notions about femininity and beauty. 

Of course, there’s also the toll that cancer normally takes on a patient’s energy and endurance. From my muscle strength to my ability to endure exercise, I noticed a significant decline in what my body could accomplish immediately after treatment. It certainly didn’t help that near the end of my treatment in 2012 I was hospitalized for seven weeks while my doctors tended to a dangerous, and extremely painful, bowel obstruction. Nothing had prepared me for the length of my hospitalization, and I seriously don’t think my medical team planned for me to have such an extended stay in an acute care bed on the cancer unit. I’ll always remember my sense of wonder and the unrestrained joy that I felt when I was finally discharged from the hospital. 

Unfortunately for the first time in my life, I learned what it’s like not to be able to walk medium or long distances. It took nearly all the strength I could muster just to stand or walk very short distances, and climbing stairs was out of the question for me. To my dismay, I discovered that the muscles in my legs had atrophied during the endless weeks that I was confined to a hospital bed. On the day I went home I had an absolutely helpless feeling as I was transported from my hospital unit to my mother’s waiting car in a wheelchair. As we drove, I knew my recovery would be arduous and probably take months.

How could I forgive cancer for wrecking my body? More importantly, how could I learn to love or appreciate my body as it now was? A few years ago, I came across a beautiful poem online. It begins, “today I asked my body what she needed.” Although the poem  isn’t specifically about cancer, it expertly addresses such themes as body image, self-acceptance and self-love. 

Today I asked my body what she needed,
Which is a big deal
Considering my journey of
Not Really Asking That Much.

I thought she might need more water.
Or protein.
Or greens.
Or yoga.
Or supplements.
Or movement.

But as I stood in the shower
Reflecting on her stretch marks,
Her roundness where I would like flatness,
Her softness where I would like firmness,
All those conditioned wishes
That form a bundle of
Never-Quite-Right-Ness,
She whispered very gently:

Could you just love me like this?

Hollie Holden, June 2016

When I first read this work, I was moved to tears by Holden’s use of personification, a literary technique that she skilfully employs throughout the poem. She gently and intimately speaks to her body as if it were a friend or another person. The author’s implication here is unmistakable, give yourself the grace and respect you would bestow on a dear friend, or even a younger version of yourself. Would you be hypercritical of your children? Would you speak out loud to yourself harshly and unforgivingly in the presence of someone else? The principal lesson for me as the reader is that I’m always worthy of love and that I deserve gentleness and compassion — even more fundamental is the notion that love and validation needs to come not just from others, but from myself as well.

by Jacqueline Chartier

Respecting the Person Behind the Cancer Diagnosis

One theme that I’ve discussed in The Teal Diaries before is identity, both self-identity and how we’re perceived by others. Sometimes the health care system and the medical establishment are especially challenging to our mental health—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. 

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

Regrettably, over the course of my journey, I’ve learned that our society still has misperceptions about chronic illnesses, such as cancer. and that there is still indignity for those of us living with such conditions. For instance, one family friend became rather reclusive when she was informed that I was going through cancer treatment and behaved as if a cancer diagnosis might be contagious. She further assumed that all chemotherapy patients lose their hair and immediately offered to loan me an old wig she had. 

But then, this legacy isn’t surprising considering the profound fear, confusion and stigma surrounding cancer for centuries. Until relatively recently the word was hardly spoken in public or said out loud. It’s no wonder that some of us living with cancer still choose to avoid revealing our illness to anyone outside of our inner circle of family and close friends. We don’t want to be viewed differently—we just want to be normal, not defined by the disease. 

Lene Andersen is a health and disability advocate living in Toronto. She’s lived with rheumatoid arthritis since she was four years old and now uses her experience to help others with chronic illness. I was encouraged by some of Andersen’s advice in a recent article she wrote for HealthCentral, a website aimed at people with chronic or serious conditions. In her piece, Feeling Like a Cog in the Healthcare Machine? We Get It. Anderson shares tips about how to get doctors and other members of your health care team to see you as a person, not just a patient. She recommends the following four strategies to help strengthen your relationship with health professionals:

Empower yourself. Remember that you have ultimate power and control over your life. In particularly intimidating situations, like being tended to by a senior doctor trailing a group of medical-school residents, feeling in control will understandably require more effort. Repeating a phrase like “nothing about me without me” in your mind might help you to sit taller and find the power to speak up instead of shutting down in front of this unexpected audience.

Be honest. It can be difficult to share some of your deepest fears and private questions with a relative stranger, but being honest with your doctor will help them develop a treatment plan that works for your situation. What’s more sharing what really matters in your life pushes you, the person, to the forefront of the discussion.

Take the lead. Coming to your appointments prepared and taking the lead emphasizes that you’re not a passive recipient of care, but an active partner, this helps to take everyone involved in the consultation off of autopilot and back to seeing you as an individual. Also if your questions have been answered and your treatment supports your life goals, you’re more likely to feel good about following your doctor’s recommendations.

Be a person to your doctor, too. Remember that your relationship with your doctor is a relationship with a person, so treat them with the same compassion and respect you would anyone else. Ask your doctors how they are doing and you’ll probably be surprised by how grateful they are for the question. You may also want to share information about your own interests, making it part of the conversation about your goals or your quality of life. Every time you chat about something other than your health, it helps build a connection with your doctor.

by Jacqueline Chartier

Temporary and Permanent

One of the most heartbreaking lessons that I’ve acquired so far from my cancer journey has been that cancer can result in abandonment. Like the majority of cancer survivors, I’ve experienced the inevitable loss of some of my long-time friends and acquaintances.

I’ve gradually been able to accept that these people where not meant to support me or to be with me and that perhaps they lacked the strength or the spirit to remain as I confront the many challenges of ovarian cancer. Indeed, some relationships can’t weather a storm and are only temporary, while others are able to withstand numerous hardships and the test of time. 

In this post I’d like to share a poem that illuminates this theme for me in a manner that I feel other cancer survivors might also strongly relate to. The poem is by Nikita Gill, the well-known British-Indian poet, playwright, and illustrator.

Temporary and Permanent

Most people in your life
were only meant 
for dreams, 
and summer laughter.

They stay till the wind changes, 
the tides turn, 
or disappear 
with the first snow.

And then there are some 
that were forged
to weather blizzards 
and pain with you.

They were cast in iron, 
set in gold 
and never ever leave you 
to face anything alone.

Know who these people are.
And love them the way they deserve.
Not everyone in your life is temporary.
A few are as permanent as love is old.

As for myself, I’ve been living in the shadow of cancer for over a decade, sometimes I’ve felt alone and other times I’ve felt the support of others. In hindsight I think it’s important that we show gratitude for the people in our lives who are permanent, the ones who are willing to stay with us even throughout the most unbearable parts of our journey. We should acknowledge that these individuals are rare and special, or as the author so appropriately describes them cast in iron, set in gold.

by Jacqueline Chartier

Another Trip Around the Sun

As a cancer survivor I have a tendency to divide my life into two parts—in my mind there’s a well-defined partition, a psychological wall separating before and after ovarian cancer struck me almost 12 years ago. The truth is none of us escape cancer unscathed, it’s a life-changing and life-altering disease. Some cancer patients even describe their experience as being reborn and staring life anew. 

Each July as my birthday aproaches I’m grateful to be alive, but also uncomfortably aware that my cancer could easily recur. The reality is that another birthday, another year on this earth, is promised to no one. This July I turn 58 and I have some advice I’d like to share, especially with people who are younger or who have not experienced any serious health issues.

  • Make an effort to appreciate each moment in life and whenever possible spend time with those you care about. I’ve witnessed far too many members of the ovarian community pass away young, some confined to a palliative care bed in what should have been the prime of their life. Sadly, I’ve also lost friends and family members prematurely due to various causes. Cherish the present, try to make today the best day possible because tomorrow is never guaranteed.
  • Stop struggling to live up to other people’s expectations, don’t sacrifice your happiness in an attempt to please them all the time. Above all get to know yourself and understand who you really are. Since my cancer diagnosis I’ve been discovering who I am, aside from the mask that I wore to fit into codependent family dynamics. Examining my past interactions with my family, I now realize that there were circumstances when I felt compelled to play a particular role in order to be loved and accepted by them.

  • Investing in yourself is always the best choice, so believe in yourself and pursue your dreams. It’s almost never too late to get that extra education, switch careers, or learn a new thing. Even in your sixties or seventies, in most cases you can still write that book, start painting or pursue your secret passion. Your future, your mental health and your overall well-being ultimately depend on you continuing to learn and grow.
  • It’s the things you didn’t experience and the goals you didn’t pursue hard enough that you’ll regret as you become older or if you become chronically ill. Go for it, whatever it is just try. Maybe you’ll make it or maybe you won’t. The result isn’t the point, your journey, your growth, is the most important issue. Don’t let anyone convince you that you shouldn’t try. Their fear is theirs, it’s not yours to carry.
  • No one thinks about you or the significance of every minor episode in your life more than you do. That mistake you made at work or that embarrassing thing you said two years ago that still keeps you up at night? The reality is that no one else involved is likely to even remember the incident, so just honour the memory and let it go. Releasing it will bring you peace of mind.
  • You’ll discover that friendships and other kinds of relationships change. Moving on from a personal or professional relationship doesn’t mean it wasn’t important, it just means that it no longer serves you. I’ve also come to realize that you don’t have to feel guilty about setting boundaries or removing toxic people from your life. It doesn’t matter whether someone is a relative, romantic interest, employer, childhood friend or a new acquaintance—you don’t have to make room for people who cause you pain or make you feel small. 

  • Remember that life isn’t fair, no matter how much you yearn for it to be. 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. Naturally, when we suffer something unspeakable such as a cancer diagnosis, our sense of stability and our belief in a just or fair world is severely shaken—we try, but we can no longer rationalize much of what we previously thought was true. 
  • Don’t overlook the fact that in order to be respected and loved by others you must first learn to respect and love yourself. You shouldn’t feel unworthy, because you’re enough. I don’t care what your parents told you, or your teachers, or anyone else. The next time you’re having a self-denigrating thought ask yourself what you would say to someone else feeling that way. What would you tell them? Try applying this same kind of gentle guidance to yourself. Most of all, acknowledge how strong you are to have made it this far in your life. You are important, you are brave, and you are resilient.
by Jacqueline Chartier

Defeating Cancer Misinformation

I know what it’s like to be diagnosed with a terrifying, complex, and potentially life-threatening medical condition — I’m an 11-year survivor of endometrioid adenocarcinoma. When I first learned that cancer had invaded my body, I was shocked and devastated. There was also the concern that as a newly diagnosed patient I had insufficient knowledge about cancer, or more specifically gynecological cancer. I’d never even heard the term endometrioid adenocarcinoma, so I knew next to nothing about my disease or how it would be treated. But then when I struggled on my own to find information or to learn more, I was often confused and felt overwhelmed. 

I discovered, much to my dismay, that those of us searching for information about cancer are buried by an avalanche of false claims, from well-meaning but dangerous advice to callous exploitation by charlatans. I was at the most vulnerable point in my life and I felt disillusioned, especially by much of what I was exposed to online or on social media. 

One 2016 report found that more than half of the most widely shared cancer articles on Facebook consisted of medically discredited claims. A more recent study examined the 50 most popular social media articles on the four most common types of cancers. The review found dangerous misinformation in more than 30 per cent of the articles analyzed and, perversely, that these articles garnered more online engagement than factual articles.

I’ve made it one of my personal goals to help fight the abundance of misinformation that is present regarding cancer. Misinformation in the form of dangerous half-truths and lies is often spread uncontrolled, either through deliberate malice or woeful ignorance. As a cancer survivor, I have particular distain for individuals, groups or organizations that deliberately attempt to exploit our vulnerability—it’s morally repulsive that they endeavor to benefit from our plight. We as cancer patents have access to millions of informational resources, but we’re forced to remain ever vigilant as we try to distinguish facts from a tide of lies and falsehoods.

How to Recognize Cancer Quacks

Use these important guidelines for spotting all categories of misinformation online.

  • Consider the primary source. Click away from the story you are reading to investigate the complete website, its mission and its contact information.
  • Read beyond the link or the first few lines of an article. Sometimes headlines can be outrageous in an effort to get clicks. What’s the whole story?
  • Confirm the author is reliable. Perform a quick search to get information on the author. Are they credible? Are they real?
  • If an article has listed supporting sources you should investigate by clicking on those links or searching for the sources. Determine if the source material that is given actually supports the content of the story.
  • Check the date. Reposting old news stories doesn’t mean they are still relevant to current events. New details or updated evidence on a topic are always emerging.
  • Is it a joke? If it is too outlandish, it might be intended as satire. Research the site and author to be sure.
  • Biases can influence how someone responds to an article, so consider if your own beliefs or perspective could be affecting your judgement. Remember that most social media platforms suggest stories that match a person’s interests, opinions and browsing habits.

I still believe that ultimately the ability to access health information online is important and empowering and helps patients be proactive in their own care. But because so much information is now available, the burden of deciding what is true or false is increasingly falling on individual consumers, in this case cancer patients and their loved ones. 

Health care professionals, research and health care organizations, government agencies, as well as technology and social media companies all need to take more responsibility and play a role in addressing the problem. They must try to help individuals be more critical consumers of information. To this end, many consumer and patient advocates argue that social media and health literacy opportunities should be incorporated into the K–12 and college curricula.

Fortunately, there are lessons that can be learned by the cancer community from interventions to counter scientific conspiracy theories, especially efforts to counter antivaccine propaganda. Previous studies indicate that improved communication of the scientific consensus can overcome some popular conspiratorial thinking on a wide variety of topics, from vaccines to climate change. 

We can take the “hidden” cure for cancer narrative as one example. The scientific and medical communities can counter this narrative by explaining that, far from being a monolithic entity, cancer is not one illness but an entire family of more than 200 diseases. Furthermore, these illnesses differ greatly between tissue type and even individual. How these malignancies respond to different interventions varies hugely, rendering the idea of a single “magic bullet” for all these myriad types exceptionally unlikely. The benefit of this approach is that it takes concerns seriously while still showing the concerns to be unfounded, ultimately improving understanding.

Sources 

David Robert Grimes; The Struggle against Cancer Misinformation. Cancer Discov 1 January 2022; 12 (1): 26–30. https://doi.org/10.1158/2159-8290.CD-21-1468

Elia Ben-Ari; Addressing the Challenges of Cancer Misinformation on Social Media. 9 September, 2021; published by the National Cancer Institute.

FactCheck.org’s 2016 article How to Spot Fake News