Tag / ovarian cancer

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

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

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 and Other Complications

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

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

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

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

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

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

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

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

by Jacqueline Chartier

The Cancer Playlist

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

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

  • Rainy Days and Mondays
    The Carpenters and the Royal Philharmonic Orchestra
  • Handle With Care
    The Travelling Wilburys Vol. 1
  • Stand By Me
    Tracy Chapman – Greatest Hits
  • Imagine
    John Lennon – Imagine
  • River
    Joni Mitchell – Hits
  • Fast Car
    Tracy Chapman – Greatest Hits
  • Both Sides Now
    Joni Mitchell – Hits
  • What a Wonderful World
    Louis Armstrong – The Ultimate Collection 
  • Over the Rainbow / What a Wonderful World
    Israel Kamakawiwo’ole – Facing Future 

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

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

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

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

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

by Jacqueline Chartier

You Want Me to Do What?

“Are you someone who enjoys the unsolicited opinions of strangers and acquaintances? If so, I can’t recommend cancer highly enough. You won’t even have the first pathology report in your hands before the advice comes pouring in. Laugh and the world laughs with you; get cancer and the world can’t shut its trap,” wrote Caitlin Flanigan in her recent article for The Atlantic. 

If you’re a cancer patient then you’ll no doubt be able to empathize with the author’s lament on the subject of getting unsolicited advice. I know I’ve certainly felt high levels of frustration as people try to inform me how to live my life or deal with my disease. In some cases, the information we’re presented with is demonstrably inaccurate, scientifically unproven or even dangerous. After a decade of being offered personal as well as medical advice, caution and scepticism have become almost second nature to me. I inherently ask myself where is this information or recommendation coming from? Precisely who is telling me this, is the source an acknowledged expert in their field? Is what they are saying accurate, or could what they’re communicating contain a bias or a particular agenda?

Like most cancer patients I was particularly vulnerable in the months following my diagnosis. When my gynecologist gave me the results of my pathology report and said “it’s cancer,” I felt as if all that I knew and held certain about the world was suddenly obliterated or in doubt. Psychologists have observed that as human beings we tend to uphold something called the just world hypothesis or just world fallacy. We cling to the idea that the world is a fair and orderly place where what happens to people generally is what they deserve. In other words, bad things happen to bad people, and good things happen to good people. However, when an individual is diagnosed with cancer their sense of stability and belief in a just or fair world is often shaken— they can no longer rationalize much of what they thought was true. Some cancer patients become distressed, especially when they recognize that according to the just world hypothesis, they must somehow be responsible for their disease or deserve it. 

The truth I’ve come to accept is that I didn’t cause my cancer and I don’t have the ability to simply will it away. However, when my ovarian cancer was initially diagnosed, I was more desperate and naïve, more willing to imagine these things were still under my control. Looking back at the trauma I faced as a new patient, both my desperation and need for reassurance were justifiable. In 2012 I was hospitalized for over a month and a half at Calgary’s Foothills Medical Centre. The women’s cancer ward is predominately a place of bravery, triumph, heartbreak and tears. When I looked into some of the other patients’ eyes, I could see them begging for a future, and I understood that they would do almost anything for the gift of just a few more months in this world. 

Regrettably, some of the things that people either said or wrote to me during that time were highly inappropriate. Many of their suggestions worsened, or even exploited, my fear and vulnerability. In particular they reinforced the misconception that I could somehow control the course of the insidious disease that had invaded my body. On occasion this might have been due to malevolence, but I still believe the leading cause of people’s poor advice was ignorance.

I was recently reminded of some of the damaging words that were spoken to me by one member’s post in an online cancer support group. I nearly gasped in astonishment as, with a measure of composure, she conveyed the advice that she had just received from her oncologist. 

“He told me I needed to forget I ever had cancer, disassociate with all cancer friends or groups and eliminate thoughts of cancer and stress from my life to prevent recurrence,” she disclosed.

I was angry and astonished that such irrational advice had come from a cancer expert, an oncologist. What type of medical professional actually believes that cancer patients have the power to cause or prevent a recurrence simply by ruminating about their disease coming back or by not dwelling on it? This to the point of scolding patients for acknowledging their illness or the possibility it will someday recur. 

Of course, I don’t deny that a positive attitude and mental practices such as meditation can both play an important role in cancer recovery. Certainly, the mind is powerful and our attitude toward healing is important, but scientific evidence indicates that we cannot wish or ignore cancer away. 

The American Cancer Society and the National Center for Complementary and Integrative Health say there’s no evidence that meditation or support groups have a significant impact on survival rates. They can do all sorts of wonderful things, like reducing stress and allowing you to live in the moment instead of worrying about the next scan. However, there is no evidence that these methods will help you to achieve remission or slow the progression of the disease in your body.

by Jacqueline Chartier

You Lift Me Up!

I’ve chosen to dedicate this Teal Diaries post to two amazing women who recently passed away, their legacies are something that I wish to make known and that I strongly admire. Although I never met them in person, Dr. Nadia Chaudhri and Julie Rohr had an impact on me and on thousands of others within the global cancer community. I will forever remain grateful to them for choosing to share their lives so publicly, for inspiring me, and ultimately for becoming such a positive part of my own journey with ovarian cancer. Nadia and Julie’s lives were tragically cut short, however before they passed on, they taught me so many lessons about what it is for us as human beings to face our mortality. Both women embodied qualities such as humility, resilience and strength of spirit, but above all they revealed to me something fundamental. They both demonstrated through example that we should always endeavor to treat each moment that we’re alive as precious. 

The Legacy of Dr. Nadia Chaudhri

Dr. Nadia Chaudhri was driven and passionate, a gifted academic as well as a wife and the mother of a young son. Just as the pandemic was beginning, she started feeling unwell and visited her doctor. Some of the issues that she reported to her physician were fatigue, lack of appetite, abdominal bloating and frequent urination. Nevertheless, it took Nadia months of personal advocacy and multiple referrals to different specialists to finally determine what had been causing her symptoms. In June 2020, at 43 years old, the Montreal neuroscience professor, was diagnosed with metastatic ovarian cancer. That fall, she went through chemotherapy but was told the following spring the cancer would be terminal. 

Nadia chose to share her life as the disease progressed and posted some of the most poignant moments of her journey on social media. She eventually gained over 150,000 followers on Twitter. While she was in the hospital, Nadia drafted a GoFundMe pitch to help fund travel for young scientists — particularly those who are marginalized or underrepresented in the field — to be able to attend the Research Society on Alcoholism’s annual conference. On the first day, her initiative raised $50,000 US. Soon after Nadia’s GoFundMe launched, Concordia University also set up a fundraiser in her honour. The Nadia Chaudhri Wingspan Award will become an annual scholarship to support neuroscientists from underrepresented backgrounds, including students who may face barriers related to systemic issues like racism, sexism or geographic origin.

Like thousands, I watched in wonder as Nadia accomplished more in her final weeks than most entirely healthy people would normally undertake in a year. From her palliative care bed, the beloved wife, mother, colleague and teacher rose awareness about ovarian cancer, the devastating disease that was gradually killing her. She even continued her fundraising for the Wingspan Award. She posted videos of her daily hallway “shuffle” and invited people to donate. Though Nadia disclosed the harsh realities of living with a terminal diagnosis—such as the angst she faced before telling her young son about it—she also shared pockets of wisdom and joy, including paintings she made, close-ups of flowers and pictures of her and her family.

Myself, I’ll always be grateful for the heightened public awareness Nadia was able to raise concerning ovarian cancer. “I am mad as hell that I was misdiagnosed for so long,” she tweeted this year on World Ovarian Cancer Day, May 8. “And mad as hell that there’s been minimal progress in the treatment of ovarian cancer.”

The Legacy of Julie Rohr

Julie Rohr was a young mother from Edmonton, Canada, she was living with retroperitoneal leiomyosarcoma (LMS), a cancer of the soft muscle tissue. It’s one of those extremely rare cancers — only about one in one million people receive the exact diagnosis Jule did — which means there’s little funding for research or treatments. When they first discovered her cancer medical experts informed her that she would be lucky to live five years. However Jule ultimately lived six years beyond her initial diagnosis, making the most of each moment. As a cancer patient, she endured several major surgeries in addition to many grueling treatments, an ominous list that included radiation, ablation, and chemotherapy.

Julie’s love of live and her constant hope and positivity made her well-known in Alberta and throughout Canada; she was treasured, especially within the cancer community. Even when periodic tests would show that her cancer had spread or returned, she remained a force of nature and still devoted her time to encouraging others facing the disease. Julie’s cancer advocacy and powerful words often made the local or national news, in addition she had thousands of followers on social media.

“Even though I have been through many surgeries, radiation, chemo and all the rest, cancer hasn’t (and can never) take our spirits, can it? We all make the choice, every day, to look for the good in life. To build one another up, even on the hardest days.” 

Julie Rohr was just 38 years old when she died 

by Jacqueline Chartier

Cancer Survivorship: Tips for the Long Haul

On November third I’ll mark the ninth anniversary of my cancer diagnosis, sometimes it feels like yesterday and other times I see it as a lifetime ago. So much has changed in the world since that afternoon when I was told that I had both uterine and ovarian cancer; I feel that in many ways I’ve become a completely different person. The “new normal” has become my reality, however there are still days when being a cancer survivor is difficult, terrifying or lonely. Here I’d like to share some of the strategies that have helped me through the long haul of cancer survivorship, it’s always a struggle even though my disease is currently in remission.

Remember how you found motivation when you started your cancer journey.

When you’re first diagnosed with cancer, you’ll definitely have moments when you sense that your world is spinning violently out of control. The fundamental paradox for me as I underwent surgery, hospitalization and chemotherapy was that I was often put in situations where I felt a sense of power. To my surprise, I witnessed myself exhibit exceptional courage and self-assurance. It was sometimes as if I was standing in life’s Category 5 hurricane and remaining steadfast and unbroken. I don’t aspire to be a legend like Terry Fox or to be anything resembling a saint or a cancer hero. But through those dark days I discovered inner qualities and personal strengths that I never appreciated or properly acknowledged in myself.

Advocate for your needs using assertiveness.

As a cancer survivor you should never stop being assertive when it comes to ensuring that your needs are met, be direct, non-aggressive and specific with your requests. As an ovarian cancer survivor, I understand that women living with this ruthless disease need love and support and we deserve to be treated with empathy and compassion. We shouldn’t have to endure abusive or toxic relationships, especially when it involves a spouse, caregiver or other family member. Of course, navigating the complex and overburdened health care system also requires patients and families to advocate for themselves—it can sometimes literally mean the difference between life and death. I so often felt ignored or regarded as a medical case number, that the occasions when I was treated with dignity or compassion are especially memorable to me. The best medical professionals still find time to connect with their patients, and they are genuinely concerned about what we are thinking and feeling.

Focus on what is essential in your life.

I’ve come to the conclusion that cancer itself doesn’t make us see what’s meaningful; we see it when our attention turns away from the small and trivial distractions that surround us. Taking life for granted has become our culturally-induced default mode — we are trained to overlook the essential. As a cancer survivor I’ve ultimately been freed from this monotonous, addictive cycle. For example, I’m grateful for the oncologists who oversaw my case, especially my surgeon. I remain in awe of the fact that they literally saved my life, I also remember the nurses who were with me 24/7 in the hospital. I established a bond with several of them when, life-threatening complications forced me to spend seven consecutive weeks on the cancer unit. Weeks in cancer time feel like years, even decades, but the magnificent oncology nursing team that I had somehow helped me pull through.

I’ve noticed that I can truly appreciate the arrival of spring after a long hard winter. The sense of renewal or rebirth that is associated with spring has been heightened for me now. I appreciate the small wonders like a pair of finches building a nest in our yard and the poppies that bloom in the garden each June. Each day that I’m cancer-free is like a gift. It’s a miracle each morning when I wake up and become conscious that my disease is in remission and that I’m lying in my own bed. I give a sigh of relief when I discover that I’m not in the hospital and there is no need to drive to the cancer centre for chemotherapy or a checkup.

Build your passion into your post-cancer life. 

Even after a cancer diagnosis upends your life and disrupts your usual routines, it’s important not to abandon your interests and hobbies or the things that you enjoy doing the most. I enjoy writing and I still do that as much as possible. There’s an emerging group of professionals who employ the arts to help people heal. The new field is called creative arts therapies, and it encompasses a wide range of modes of expression including art, dance/movement, drama, music and poetry. When cancer patients undertake these activities, whether individually or with the guidance of a creative art therapist, they stand to benefit psychologically and emotionally. Recently there’s been a trend toward simple or old-fashioned crafts and hobbies such as knitting. Some adults are even using colouring books to relax and reduce daily stress. 

Connect with a mentor or support group.

There’s a familiar proverb that states that it takes a village to raise a child. I think that this can be modified to assert that it takes a village to properly support a cancer patient. When I was diagnosed with ovarian cancer nine years ago, I was suddenly faced with a whole new array of complex needs. It was sometimes necessary, or in my best interest, to accept the assistance of my family members or inner circle of friends. During treatment I also had access to social workers, psychologists, dieticians and other skilled professionals to provide support and guidance. Even this far into my cancer journey, I still belong to several online support groups for women with ovarian cancer and take part in fundraising events.

by Jacqueline Chartier

COVID-19 and Déjà Vu

There is much that all of us have experienced since the beginning of the COVID-19 pandemic that is shocking, unexpected, unpredictable, unknowable and new. Life like this for some people has become almost overwhelming because there is so much that hasn’t been felt before or seen. I think that ovarian cancer patients might have a unique advantage, we’re already familiar with this type of uncertainty. We suddenly find that we must try our best to live today while we do not know what tomorrow and the day after will bring.

Before I was diagnosed with cancer, I had no true sense of how precarious human existence is or of how uncertain my future had probably always been. Then, on November 3, 2011, I received a phone call from my gynecologist’s office, I was told that he wanted to see me in person immediately. With that meeting I learned that the course of my entire life could change in just a single day, all at once I was forced to acknowledge my own mortality and how fragile life is. 

Lately I’ve signed up for text messages from Alberta Health Services, each day there is a message designed to provide advice or some encouragement during this universally stressful and uncertain time. What I didn’t expect is how closely messages for people during a pandemic would echo the standard counselling that I was given throughout my cancer treatment. Here is some of the familiar advice that I’ve received over the past few weeks.

  • When bad things happen that we can’t control, we often focus on the things we can’t change. Focus on what you can control; what can you do to help yourself (or someone else) today?
  • Set goals for today, even if they are small. Goals should be SMART; Specific, Measurable, Achievable, Realistic and Timely.
  • Panic is extreme anxiety that creates tunnel vision and doesn’t solve problems. Take a minute, step back, and think.
  • A healthy body can set the stage for a healthy mind. Do your best to maintain a healthy diet and try to exercise.
  • If your best friend or loved one was having the same negative thought as you, what would you tell them? Try applying that to yourself.

Advocate for your needs using assertiveness. Assertiveness is being respectful to you and the other person. Be direct, non-aggressive, and highly specific with your request. 

  • Notice when you’re feeling sad, angry, lost or overwhelmed about life changes. Don’t push the feeling away—acknowledge these feelings and give yourself time to grieve.
  • Make sure each day involves some pleasure (example: take a bath, enjoy food, watch your favorite TV show, talk with a friend).
  • Practice “belly breathing” to reduce stress. Breathe deep into your abdomen. Watch your belly rise and fall.
  • Take a moment to notice how you feel right now. Don’t judge your emotions or try to change them. Just observe them and see how much your current stress levels are reduced.
  • Visualize yourself coping with current problems. See yourself facing these challenges. You have overcome challenges before.
  • Encourage yourself through tough times. Repeat statements like I can do this, this won’t last forever, I’m doing my best.
  • Acknowledge how strong you are to have made it here. You are important, you are brave, and you are resilient.

by Jacqueline Chartier

The Things That Are Not Okay

DOCTOR:  I am sorry this is the news I have to be telling you. 

ME:  It’s okay.

DOCTOR:  No, it’s not okay. Nothing about this conversation is okay. 

…in that sacred moment, this doctor gave me permission to be honest. That’s how I’ve been comfortable being so open about grief.

— Shannon Dingle

When you’re diagnosed with cancer there is sometimes a tendency to try to remain strong and stoic and to not complain or “burden” others with your illness. I think this predisposition might be more deep-seated in women because of the way we are socialized. Many of us will reply that things are okay or attempt to act like everything is alright in situations that are completely unacceptable. I’ve made a list of some unacceptable situations that are, in my opinion, not okay and they should not be painfully tolerated by people living with cancer or any other serious illness. I’ve made it my mission to call attention to these injustices—I try to call them out whenever possible. 

Spouses or Family Members Who Do Not Offer Support 

As an ovarian cancer survivor, I understand that women living with this ruthless disease need love and support and we deserve to be treated with empathy and compassion. We shouldn’t have to endure abusive or toxic relationships, especially when it involves a spouse, caregiver or other family member. Unfortunately, I’ve heard of women whose husbands or partners don’t support them emotionally through their cancer journey. Some spouses complain when a woman’s cancer treatment interferes with family holidays or social activities. A few will even have the audacity to grumble if their sick partner is unable to perform her regular domestic work or maintain certain household responsibilities. 

Medical Professionals Who Lack Compassion or Empathy

To me the best doctors take time to connect with their patients, and they genuinely care what we are thinking and feeling. During my hospitalizations, I was so often ignored or regarded as an insignificant number that the occasions when I was treated with dignity or compassion are especially memorable to me.  I will always retain one particular memory from during my months of rigorous cancer treatment.

It was in the middle of the night and I had already spent several grueling hours in the emergency room when I was finally sent to diagnostic imaging for a CT scan. The technician performing the scan was highly empathetic toward me. He immediately noticed that I appeared cold and nauseous, so he offered me a blanket as well as a small basin just in case I was sick. Next, he saw that my IV had been inserted poorly by someone in the ER and that it required redoing. However, instead of changing my IV before the scan, he explained that he didn’t want to put me through the unpleasant procedure right away. We ultimately used the imperfect IV line to administer the contrast solution for the scan and it held out until we were finished.

A Culture of Guilt or Shame Surrounding Cancer

I’m still inspired by the words of the late American sportscaster Stuart Scott. “When you die, it does not mean that you lose to cancer,” he said. “You beat cancer by how you live, why you live, and in the manner in which you live,” There’s a controversial, yet commonly held, view that a cancer diagnosis is a war or a battle that must be won. The problem with this philosophy is that it places the burden almost entirely on us patients. If we die or if our cancer ultimately recurs it’s because we didn’t think positively enough or we just weren’t strong enough to will it away.

Many healthy people think that if they are diagnosed with cancer they will be treated quickly and then all they’ll need to survive is a positive attitude and a fighting spirit. They are wrong. In my opinion, a person’s cancer outcome will depend almost exclusively on medical science. If someone’s cancer progresses, it’s a failure of the medical treatments that are currently available to them, plain and simple. I know plenty of women who’ve succumbed to ovarian cancer and they were among the bravest and most resolute people on Earth. Ultimately, they are no less survivors than those of us who are lucky enough to be “cured” or to enjoy decades of remission.

A Lack of Progress in the Treatment of Ovarian Cancer

According to the Canadian Cancer Society an estimated 3,000 Canadian women will be diagnosed with ovarian cancer in 2019. An estimated 1,900 will die from the disease. Mortality rates for ovarian cancer have declined only slightly in the forty years since the “War on Cancer” was declared. 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 women diagnosed with ovarian cancer will survive for at least 5 years.

The survival rate remains dismal compared with most other types of cancer, this is essentially because the majority of women aren’t diagnosed until the disease is advanced and has spread beyond their reproductive organs. There is no reliable screening test for ovarian cancer and the early symptoms are often quite vague. For years, women and families affected by ovarian cancer have advocated for greater government funding of research into this disease. The indisputable fact remains that knowledge about ovarian cancer is still not as developed as it is for many other cancers.