Tag / cancer diagnosis

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

Cancer Patients Face a Health System in Crisis

“Since the pandemic’s start, we’ve worried about the health system’s dramatic collapse but, like my dying patients, we’re witnessing a slower death; a system imperceptibly degrading until one day, like a cancer-riddled body, it just stops working entirely.”

Dr. Gabriel Fabreau

Doctors, nurses and patient advocates in both Canada and the U.S. are sounding the alarm that after two years of COVID-19, our hospitals have never been worse off. This incredibly disturbing quote describing the health care system is from a recent opinion piece in my local newspaper. The piece was written by Dr. Gabriel Fabreau, a general internist and an assistant professor at the O’Brien Institute for Public Health at the University of Calgary. Fabreau argues that the quality of care in Alberta is degrading, increasingly unsafe and often without dignity.

When I was first diagnosed with cancer in November 2011 I was like many Canadians, I was proud of our universal health care but I had never really been required to test it. I had never dealt with a chronic or life-threatening illness before. I’d never even been hospitalized for surgery or seen the inside of a cancer centre. My innocence of what’s involved in being treated for cancer was shattered almost literally overnight. It took three surgeries and five cycles of chemotherapy to force my disease into remission, along the way there were too many outpatient appointments, tests and scans for me to count. I’ve currently logged thousands of hours in hospitals and seen dozens of physicians and physicians in training, that’s enough to consider myself an insider when it comes to the basics of Canada’s health care system.

Photo by Anna Shvets

Even a decade ago, long before the pandemic, there were many warning signs that the system was under strain. During my cancer surgeries I often felt an urgent need to leave the hospital and go home, I never felt relaxed or like I could take my time to heal. Even then, it may have been easier to define hospitals by what they are not. They’re not places for the sick to get well, not unless healing takes place in the brief interval of time that makes the stay a compensated expense. My hospital treatment was primarily covered by Alberta’s universal health insurance, but I needed my personal Blue Cross insurance plan as well. Through it all I was aware that hospital beds in Alberta cost around $1000 per day and that those beds are in limited supply.

I remember watching in surprise as some short-term stay patients were relegated to the hallway due to the unavailability of rooms. Unfortunately, what I witnessed was a typical example, an unpleasant reminder of how drastically the situation for patients and their families has changed in only a generation. Once hospitals were where you stayed when you were too sick to survive at home; now it’s become customary to go home anyway, cobbling together your own nursing services from friends, relatives and drop-in professionals.

Justifiably the deteriorating situation during the pandemic has me concerned. As a cancer survivor and someone who has relied heavily on health care, I’m becoming more worried each day. The reality is that if my cancer recurs or if I have to resume active treatment, I may not be able to obtain the essential care I need. Fabreau cites the growing deficit in cancer screening and follow up care as the most troubling to him.  “Most tragically, we’re seeing missed cancers, illnesses so advanced they are now incurable. We know delayed diagnosis and treatment increase cancer deaths. Canadian research predicts over 21,000 excess cancer deaths by 2030. Preventable deaths because patients couldn’t or didn’t have appropriate cancer screening.”

Photo by Cedric Fauntleroy

I’m enraged and disheartened because, as Dr. Fabreau explains, the disastrous situation that we now find ourselves in was mainly avoidable. Even before the pandemic, the supply of health care workers was becoming inadequate. Canada has among the lowest physician and an average nurse supply per capita among high-income countries. Both workforces are running on empty: over half of physicians and more than 75 per cent of nurses in Canada are burnt out. It’s now disturbingly obvious that action should have been taken years ago to hire, train and recruit more health care workers. 

Finally, to reduce hospital demand, we must stop pretending COVID-19 is over when it is not. The pandemic is far from ended, particularly for cancer patients and others who are immunocompromised. It’s true Canadian COVID transmission is cresting as we enter the spring and summer seasons, but that simply means we must use this short reprieve until fall to prepare. Governments and health authorities would be wise to use this time to focus on important initiatives such as improving indoor ventilation and uptake of vaccine booster doses.

by Jacqueline Chartier

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.

by Jacqueline Chartier

Cancer Patients: Tackling the Privacy Dilemma

As a patient I know that there are laws in place to protect my medical records and the confidential nature of my consultations with my doctor. However, there is much less to protect my privacy in other situations. For example, if information I may not want to become public knowledge comes to be revealed through other individuals who are not part of my medical team. When undergoing cancer treatment, it’s usually necessary for us to share sensitive or highly personal medical information with members of our family, we also may need to share news with our social network or work colleagues. 

I realize now, nine years after my cancer diagnosis, that it was truly up to me what I wanted to say about my medical condition, what I wanted other people to know and when. There have certainly been times when I should have been more careful with what I revealed or chosen more carefully who I confided in. Much to my chagrin, one matter of etiquette that was breached during my diagnosis and treatment was respect for my privacy as a cancer patient. Of course, I won’t name people specifically, but there were a couple of family acquaintances who took it upon themselves to spread the news of my illness. Please don’t share cancer information unless you know you have permission from the individual. Don’t use telephone calls, emails, social media, newsletters or bulletins to comment about a person without their specific consent. This rule is especially important when it comes to something as intensely personal as one’s health or a cancer diagnosis.

Regrettably, I’ve learned that our society still has misperceptions about chronic illnesses, such as cancer, and that there is still indignity for those of us living with such conditions. This legacy isn’t surprising considering the profound fear, confusion and stigma surrounding cancer for centuries. Until relatively recently the word was hardly spoken in public or said out loud. In 1978 Susan Sontag wrote the classic, and still controversial work, Illness as Metaphor. A breast cancer patient herself when she was authoring the book, Sontag argues that the metaphors and myths surrounding certain illnesses add greatly to the suffering of patients and frequently inhibit them from seeking proper treatment. By demystifying the fantasies surrounding cancer, Sontag strives to show cancer for what it is—just a disease. Cancer, she argues, is not a curse, not a punishment, certainly not an embarrassment, and it is often highly curable if appropriate treatment is followed.

It’s no wonder that some cancer patients still choose to avoid revealing their illness to others. Some don’t want to be viewed differently. They just want to be normal, not defined by the disease. Others may choose to stay silent to protect their privacy and emotional stability. When the news broke that musical legend David Bowie had died at the age of 69 after an 18-month battle with cancer, fans around the world expressed not just grief but shock. Despite decades on the world stage, under the glare of a public spotlight, the rock-and-roll icon managed to keep his cancer journey a secret from fans and friends alike, sharing his medical condition only with a handful of people in his inner circle.

It’s one thing to grieve a long life lived and a promise fulfilled. It is quite another to be shaken by a life cut short. Recently many of us were shocked once again by the news that Hollywood actor Chadwick Boseman had died at the age of 43 from colon cancer. Boseman was diagnosed with stage III colon cancer in 2016, and battled with it these last 4 years as it progressed to stage IV. He never spoke publicly about his cancer diagnosis, and according to The Hollywood Reporter, “Only a handful of non-family members knew that Boseman was sick… with varying degrees of knowledge about the severity of his condition.” During treatment, involving multiple surgeries and chemotherapy, he continued to work and completed production for several films, Boseman died at his home as a result of complications related to colon cancer on August 28, 2020, with his wife and family by his side. Before his death, he was able to choose how much of his cancer journey he wanted to share, when and with who.

by Jacqueline Chartier

A Unique Kind of Fear

Finding out you have cancer, I can personally attest, is a unique kind of fear, but I believe this feeling is heightened even more for women who learn that they have ovarian cancer. It’s among the most feared and deadly cancers, one that tends to inhabit our worst nightmares of the disease. That is why patients with gynecologic cancer, especially ovarian, are frequently warned not to Google their condition or research it online. Admittedly most of the information that is available on websites is general or focusses on worst case scenarios. Oncologists are eager to remind us that broad statistics don’t take into consideration an individual patient’s age or overall health. In many cases the data presented is likely to overlook a lot of specific variables. Even so, when I go online the numbers pertaining to ovarian cancer are enough to terrify me.

Devastating Statistics

Ovarian cancer is the eighth leading cause of cancer in women, according to the World Health Organization. Nearly 300,000 women worldwide will develop it this year. On a global scale their prospects are often bleak, it’s estimated that one in six will die within three months of diagnosis and fewer than half will be alive in five years.

Each year about  3,100 Canadian women are newly diagnosed with ovarian cancer and an estimated 1,950 die from it. Mortality rates for ovarian cancer have declined only slightly in the forty years since the “War on Cancer” was declared. Most other cancers have shown a much greater reduction in mortality.

Ovarian cancer survival rates remain much lower than breast cancer and other cancers that affect women. Five-year survival rates are commonly used to compare different cancers. In Canada, the five-year net survival for ovarian cancer is approximately 44 per cent. This means that, on average, only about 44 per cent of the women who are diagnosed with ovarian cancer will survive for at least 5 years.

Like a Loaded Gun

One woman with ovarian cancer compared the fear of recurrence to a person always having a loaded gun pressed against her back. You never know when they will pull the trigger, or even if they will, but every minute you are conscious of them being there. I find this metaphor quite powerful, you never know if or when your cancer will return and this uncertainty is something that you must accept as part of your everyday life. A cancer recurrence happens because some cancer cells were left behind and eventually grow and become apparent. The cancer may come back to the same place as the original tumor or to another place in the body. According to the Ovarian Cancer Research Alliance around 70 per cent of patients diagnosed with ovarian cancer will have a recurrence. However, one of the most important factors in determining an individual’s risk of recurrence is the stage of their cancer at diagnosis.

Patients diagnosed with stage I have a 10 per cent chance of recurrence.

Patients diagnosed with stage II have a 30 per cent chance of recurrence.

Patients diagnosed with stage III have a 70 to 90 per cent chance of recurrence

Patients diagnosed with stage IV have a 90 to 95 per cent chance of recurrence.

Recurrent ovarian cancer is treatable but rarely curable. Women with recurrent ovarian cancer may have to undergo another surgery. Many women with recurrent ovarian cancer receive chemotherapy for a prolonged period of time, sometimes continuously for the rest of their life.

Elly Mayday (1988-2019) continued her modelling career while undergoing treatment for ovarian cancer.

Braver Than I Thought

I’ve learned that when you are diagnosed with cancer there are moments when you become overwhelmed and sense that your world is spinning violently out of control. However, 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 steadfast and unbroken. I certainly 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 that I never appreciated or properly acknowledged in myself. Subjected to the ultimate test, I’ve sometimes shocked myself with my enormous capacity to overcome adversity and to confront physical pain and suffering.

by Jacqueline Chartier

10 Things I Wish I Had Done Before I Was Diagnosed With Cancer

I’m convinced that nothing can fully prepare a person for the impact of a cancer diagnosis, but there are still things that I wish I had done before cancer became a part of my life. As a five-year cancer survivor I now have the wisdom of hindsight, so I’ve chosen to share my definitive list of what I wish I had accomplished when I was still healthy.

to-do-list

Have a Plan Regarding My Work and Income

It’s important to have a strategy in the event that you suddenly become unable to work due to illness or disability. Unfortunately I was unprepared and learned this lesson the hard way. If you’re a self-employed individual, such as a freelancer or independent contractor, you may be especially vulnerable if circumstances ever render you unable to work for the long-term.

Go Out and Experience New Things

When I was still in good health, I made too many excuses about why I couldn’t go out to events or experience new things. I’m basically an introvert and prefer to stay in, it’s for couples only, I can’t afford it, the transportation and commute are too much of a hassle were some of the issues I’d focus on when ruling out gatherings or events.

Be More Physically Active

I regret not going for long walks or spending more time outdoors in the years leading up to my cancer diagnosis. Science has essentially proven that people who are active have an advantage compared to those who don’t exercise. Active individuals tend to live longer, healthier lives than their sedentary counterparts.

Purchase a Disability Insurance Plan

This is something I really regret not taking care of and I strongly urge anyone without this type of insurance to look into a plan. The only alternative to private insurance if you suddenly become chronically ill or disabled is most often government assistance.

Listen to My Body

Ovarian cancer is sometimes called the “silent killer” because its symptoms are often subtle or mimic other less serious illnesses. It’s important to know what is normal for your body and to be alert to any changes that might indicate a problem. I wish I had been more in tune with my body and more persistent with my doctors.

Develop a Support Network

When I was diagnosed with cancer I quickly realized that my social support network is very small. Specifically, I’m single, come from a small family of origin and have few close friends. I understand that some of this isn’t under my control, but I definitely wish I had been more diligent about building a network when I was still healthy.

Pay More Attention to My Relationships

If you have conflicts in your family relationships or have simply drifted apart, I suggest you reach out to repair whatever damage might have occurred over the years. Once you are diagnosed with a chronic illness you suddenly comprehend the value of having strong bonds with family members, including your parents, spouse, siblings and children.

Be Prepared For People’s Reactions

When people learned of my cancer diagnosis their reactions sometimes caused me resentment, frustration or anger. They meant well, but I could have been more prepared for their sometimes inappropriate remarks and gestures. Many individuals are misinformed about the scientific facts surrounding cancer or don’t know how to properly reach out to a friend who has been diagnosed with the disease.

Catch Up on Things I’d Let Slide

We all have a tendency to procrastinate or push tasks and projects to the back burner. When I became ill I suddenly realized how many things were left undone and how many loose ends I should have tied up. If you have been meaning to buy some essential new pieces for your wardrobe, need new glasses or need to get your car or computer serviced, do it now!

Establish an Outlet For Anger and Grief

The universal emotions for nearly all cancer patients are anger and grief—intense anger that can border on rage and a grief that can feel like a bottomless well of despair. To maintain your emotional health you’ll need an outlet for these feelings. It might be a friend, therapist or support group, but it’s important to have someone that you can confide in without fear of judgment

 

by Jacqueline Chartier

Because it’s 2016: A New Era for Cancer Patients

One of the most stunning realizations that I’ve had since being diagnosed with cancer is how much cancer impacts the whole person—the disease can undermine almost every aspect of a person’s life. The field of oncology acknowledges this, at least more than it did four decades ago when my grandmother survived her breast cancer diagnosis. Today most cancer patients, including myself, have access to social workers, psychologists, dieticians and other skilled professionals. Treating the whole person and recognizing that each patient has unique issues and needs have become firmly entrenched and are part of the philosophy of cancer care.

At my cancer centre there are now two forms that patients are asked to fill out at every checkup. The first contains questions to gage a patient’s physical wellbeing as they go thorough treatment, but a second questionnaire was recently added. This latest form is used to gather information about the various psychosocial issues that are associated with cancer. Certain social, financial or mental health issues may need to be addressed. While I sometimes resent having to answer what I consider highly personal questions, I realize the importance of asking cancer patients about almost every aspect of their lives.

Research Breakthroughs

immunotherapy two

Dr. Barbara Vanderhyden, one of Canada’s preeminent ovarian cancer researchers, recalls that when she began her work she was one of the only people in Canada researching the disease. Over a decade ago Vanderhyden started the Canadian Conference on Ovarian Cancer Research and now the community has grown from three people to more than 60 ovarian cancer researchers across the country. This flourishing research community has led to a number of recent discoveries. For instance, it is now known that ovarian cancer is not one disease but a spectrum of diseases with different responses to treatment.

I’m frequently amazed at the lightening speed at which new cancer treatments are being discovered and implemented. For example, immunotherapy is an emerging approach to treatment that boosts the immune response to cancer. It enables the body to target and destroy cancer cells. There are three main areas of immunotherapy that are showing promise.

  • Vaccines that enhance immune system response
  • Inhibitors that affect how the immune system regulates itself
  • Adoptive T-cell transfer, which removes a patient’s cancer-fighting T-cells and activates them before returning them to the bloodstream

Although gynecological cancers, such as mine, have seen only modest breakthroughs in immunotherapy, melanoma and lung cancer are areas that are witnessing great progress.

New Targeted Treatments

Immunotherapy one

According to many scientists a new era of cancer treatment is beginning in which patients get drugs matched specifically to their tumour. Patients experience longer survival and fewer toxic effects through this approach, which is being made possible by advances in genetic profiling of the tumour itself. Conventional chemotherapy and radiation treatments have both short-term and long-term side effects and can be absolutely brutal for patients to endure. These treatments kill a significant number of healthy cells in addition to the cancer cells. “At the moment it’s more like using a cannonball to kill an ant – and creating a whole lot of damage at the same time,” explains professor Roy Herbst, chief of medical oncology at Yale Cancer Centre.

Meanwhile a UK trial, called Optima, is being run by University College London and Cambridge University and funded by Cancer Research UK. Beginning this summer, it will recruit 4,500 women with breast cancer. The women’s tumours will be genetically tested as soon as they are diagnosed to establish which will respond to chemotherapy and which will not. Of the 50,000 or so women diagnosed with breast cancer in the UK each year, about 40 per cent, or 20,000, are currently given chemotherapy but only half of them do well as a result of it; in the other half, the benefit is unclear. The researchers hope to find out which of the latter group actually need chemotherapy. As one oncologist emphasized: “In some ways it is simple – it means that you can make sure you are giving the right drug to the right person at the right time. In others it is very complex, because there are so many pieces to the jigsaw. We need to put the puzzle together.”

by Jacqueline Chartier

Relying on the Web: What Cancer Patients Should Know

When I was first diagnosed with cancer, I entered a psychological realm where wanting to know everything about the disease alternated with fear and aversion. Numb and in shock, I would often read over my three-page pathology report, using various websites to meticulously research the strange and frightening terminology it contained.

I’m not alone in feeling this way or in turning to the Internet for help. Nearly half of all Canadian adults are asking questions about cancer, and most turn first to the web for information. The problem is that this self-research is leaving many cancer patients confused, overwhelmed and stressed out. Although we tend to use the Internet as our first resource, most of us don’t have strong faith in the information that it provides.

IMG_0221

According to a new survey commissioned by the Canadian Cancer Society, when it comes to getting definitive cancer information, doctors and healthcare professionals are trusted by 94 per cent of Canadians. In spite of that only eight per cent of Canadians contacted their healthcare team first with questions. Similarly, cancer organizations and charities are trusted by 87 per cent of those seeking information, but less than five per cent of Canadians searching for cancer information reached out to them. People are more skeptical of online sources with only 69 per cent trusting the information. Despite their uncertainty, 85 per cent of people with cancer questions first turned to a search engine.

Why do Canadians so frequently consult the web for information about cancer if they place more confidence in their oncologist and organizations such as the Canadian Cancer Society? According to the survey, convenience is an issue. While the web is easily accessible, more than half of respondents said it is challenging to get time to speak with their healthcare team. But ease of use comes with unexpected side effects. Two-thirds of Internet users felt overwhelmed with information, and 62 per cent felt stressed out and worried, jumping to 70 per cent among Canadians 18 to 34.

There are several alternatives to randomly searching the web that I would strongly recommend.

Use Only Reliable Internet Sites

My cancer facility, the Tom Baker Cancer Centre in Calgary, provides patients with a list of recommend websites. Here are a few of the most essential ones.

American Cancer Society
Canadian Cancer Society
National Cancer Institute
CancerNet
Oncolink

Use The Canadian Cancer Society’s Cancer Information Service

IMG_0117Since 1996, the Canadian Cancer Society has answered 1,250,000 questions through its Cancer Information Service. The Society’s toll-free bilingual Cancer Information Service can be reached at 1-888-939-3333. Assistance is available to cancer patients, caregivers, the general public and healthcare professionals. An information specialist will take all the time you need to answer your questions and provide you with information on the following topics:

  • cancer treatment and side effects
  • clinical trials
  • coping with cancer
  • emotional support services
  • prevention
  • help in the community
  • complementary therapies

The Canadian Cancer Society’s phone line is available during business hours Monday to Friday. You should also note that when you contact the Cancer Information Service for help, your privacy is protected and you will not be asked for donations or put on a mailing list.

Access Support Organizations for Your Specific Cancer Type

Instead of randomly searching the Internet try connecting with an organization that specializes in providing support to individuals with your type of cancer. For example, staff in Ovarian Cancer Canada’s regional offices are available to answer your questions and to provide support via telephone or email. Ovarian Cancer Canada hosts webinars, workshops and events that are relevant to women living with the disease. You can also listen to various educational recordings on their YouTube channel.

Finally, Ovarian Cancer Canada offers a comprehensive guide to support and inform women who have been newly diagnosed with ovarian cancer. The publication is called By Your Side and printed copies of this resource are provided free of charge across Canada. You can Order By Your Side by filling out an online form or by calling 1-877-413-7970 (toll free).

by Jacqueline Chartier

Exploring Cancer’s Realm

Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds duel citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.

— Susan Sontag

As a cancer survivor I often feel like I’m an outsider trying to fit into the world I once occupied, the world of the healthy and cancer free. My cancer diagnosis has caused me to view the world differently—for example many things that once seemed enormously important have lost significance and become almost trivial. I’ve discovered that physical attractiveness, material possessions and social status all matter less to me now. Not surprisingly, these things frequently seem to fade into irrelevance as I confront a life-threatening illness. The realm of cancer is teeming with complex, and sometimes even existential, topics. Healthy individuals are able to carry on with day-to-day trivialities, but I’ve had to stop in order to reflect on some of the deeper questions that others have the luxury of ignoring. Since being informed that I have cancer I’ve discovered that I can no longer defer life’s existential questions. Why am I here? What is the purpose of my life? Who am I?

susansontag2

Susan Sontag was an American writer and commentator on modern culture. She published essays, novels, and short stories. Sontag explored society’s attitudes toward cancer in her work Illness as Metaphor.

Regrettably, I’ve learned that our society still has misperceptions about chronic illnesses, such as cancer, and that there is still indignity for those of us living with such conditions. This legacy isn’t surprising considering the profound fear, confusion and stigma surrounding cancer for centuries. Until relatively recently the word was hardly spoken in public or said out loud. In 1978 Susan Sontag wrote the classic, and still controversial work, Illness as Metaphor. A breast cancer patient herself when she was authoring the book, Sontag argues that the metaphors and myths surrounding certain illnesses add greatly to the suffering of patients and frequently inhibit them from seeking proper treatment. By demystifying the fantasies surrounding cancer, Sontag strives to show cancer for what it is—just a disease. Cancer, she argues, is not a curse, not a punishment, certainly not an embarrassment, and it is often highly curable if good treatment is followed.

It’s no wonder that some cancer patients still choose to avoid revealing their illness to others. Some don’t want to be viewed differently. They just want to be normal, not defined by the disease. Others may choose to stay silent to protect their privacy and emotional stability. When the news broke last month that musical legend David Bowie had died at the age of 69 after an 18-month battle with cancer, fans around the world expressed not just grief but shock. Despite more than five decades on the world stage, under the glare of a public spotlight, the rock-and-roll icon managed to keep his cancer journey a secret from fans and friends alike, sharing it only with a handful of people in his inner circle.

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Sometimes when people are diagnosed, they receive a lot of advice from friends, family members or others—virtually everyone has known someone with a form of the disease. Often the intentions are good, but the stories can be scary and frequently make a patient feel worse. When a sizeable network of people learned that I had been diagnosed with uterine and ovarian cancer, I received information that was both inappropriate and that increased my anxiety. I was inundated with everything from holistic remedies for cancer to stories about aunt so-and-so’s bowel cancer. Keeping a diagnosis a secret keeps these kinds of opinions away.

Ultimately when my cancer became common knowledge, there was another aspect that I found somewhat unsettling. The moment some neighbours and acquaintances learned about my illness, all of a sudden it wasn’t really about me. To a large extent their focus became trying to make sure that my mother, who was in the role of my caregiver, was okay. She had a reliable network that was concerned about her and that wanted to make certain that she wasn’t becoming too overwhelmed by the situation. I don’t resent the support that was provided to my mom, but at the time I remember being a little envious. It made me more keenly aware that I don’t possess a large number of close friends myself; it also became slightly harder for me to focus on my own emotional issues and needs.

by Jacqueline Chartier

Lessons in Survivorship: The Wisdom of Cancer

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As I’ve mentioned before in this blog, self-assessment or the need to reprioritize your life is a virtually inevitable part of being a cancer survivor. This month marks the fourth anniversary of my diagnosis. My gynecologist informed me of my disease on November 3, 2011, and this will always remain one of the most significant days of my life. How can one explain such a profound and life-altering event to a person who has always been relatively healthy? Some psychologists and experts have observed that cancer patients divide their lives into two parts or that we are figuratively born twice.

Since the beginning of my cancer experience there have been moments of epiphany and numerous opportunities for personal reflection. I want to share a few of the survivorship lessons that I’ve come to terms with over the past four years. According to professionals in the cancer field, survivorship is living with and beyond cancer. Survivorship covers the physical, psychosocial, and economic issues of cancer, from diagnosis until the end of life. This is some of what I’ve learned so far.

If something isn’t going to matter or have any impact five years from now, I probably shouldn’t spend time worrying about the issue. Not until my diagnosis with cancer did I realize how much time I spend worrying about the future or regretting the past. I believe more than ever in the importance of focusing my attention on the present. I can live each moment only once, so why waste that precious moment in a state of self-induced stress or anxiety? As for the direction of my life, I’ve ultimately gained a clearer perspective about what my priorities are—I’m proud of my ability to concentrate on the values and relationships that I know are the most significant.

I tend to enjoy my own company more than I enjoy being in groups or socializing with other people. I’ve accepted that I’m an introvert and there’s nothing wrong with the way I am, it’s not necessary for me to apologize. I lament the fact that my personality type is so frequently misunderstood and that introversion is often confused with being shy. Shyness is the fear of negative judgment, and introversion is a preference for quiet, minimally stimulating environments. I become the most upset when I’m accused of disliking people in general and of lacking the skills to be an extrovert. The truth is that introverts comprise at least one quarter of the population and we continue to make our own unique contributions to society.

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It’s counterproductive to surround myself with people who don’t want to be with me or don’t value me. I’ve reached a point on my cancer journey where I find it’s no longer necessary to impress anyone. If they like me the way I am, that’s fine. If they don’t, it’s their loss.

I’ve definitely developed zero tolerance for having toxic people in my life.

Some Signs of a Toxic Person

Nothing you can say or do is good enough.
They comment on the smallest flaw or perceived imperfection.
They drag up your past and won’t allow you to grow or be different.
They act like they are fabulous and never make mistakes.
They leave you feeling guilty and ashamed of who you are.
They are critical, controlling and don’t think about your needs.
They leave you feeling beaten, wounded, battered bruised and torn.
They violate your boundaries and never respect no.
They don’t care about your feelings and they like to see you suffer.
It’s always about them and what they think and want and feel.

I rarely use the word someday and I try to avoid talking about future plans in vague or uncertain terms. Most people I know take the future for granted and think of it as something that will always be there for them. In 2012 I spent over a month and a half on Unit 42 at Calgary’s Foothills Hospital. This 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. As a cancer survivor I’ve discovered how precarious tomorrow really is and that you can’t always depend on someday.

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I’ve learned it’s not wrong to put my own needs first and that it’s essential to take care of myself physically and emotionally. After undergoing five cycles of chemotherapy and three cancer surgeries within eight months—I’m finally treating my body with the respect it deserves. We’re all pressured daily to move faster, do more, sleep less, earn more money and obtain that promotion. Within the cancer community, I hear the term “self-care” a lot. I don’t know if I’m fond of the expression, but it’s a concept I believe in strongly, I consider it particularly relevant for women with cancer. As women we are socially encouraged to give everyone else our time, energy and attention—but often feel conflicted or guilty when we stop long enough to take equally thoughtful care of ourselves.