Illustration by Caroline Hamel
Kali Cousins still remembers the fear.
It hit hard, on a day when everyone expected her to be happy. She’d just heard from her doctors that, after four long months at Calgary’s Tom Baker Cancer Centre, she was well enough to go home.
She was terrified.
“I’d had close medical attention for so long, I was afraid to be without it,” Cousins explains. After she returned to her home in Elk Point, northwest of Edmonton, she couldn’t sleep for a month. “Even though I’d moved back in with my parents, I was scared something would happen at night and no one would notice or be able to help.”
That was seven years ago, when Cousins was 21. After finishing her third year of university, a month of tests revealed that her lack of energy and the fire in her leg was due to acute myelogenous leukemia. By noon the day after her diagnosis, she’d begun aggressive chemotherapy.
“I had a rapidly growing mass of cancer cells on my spine. Another day, and the doctors think I’d probably have died.” Next came radiation and, when she was strong enough, a high-risk hematopoietic stem-cell transplant, her only hope for a long-term future.
Hard as her treatment was, Cousins says the most difficult part was when it stopped. “When you’re going through it, you keep going because you have to,” she says. “Afterwards, things weren’t the way they were before. I’m happier than ever now, but it took time to start feeling like me again.”
Cousins is a cancer survivor, one of an ever-growing number. The majority of people survive beyond cancer’s acute treatment phase, a welcome upward trend that started in the mid-1970s. The total number of survivors has tripled over the past four decades according to the U.S. National Cancer Institute. In Canada, 65 per cent of those diagnosed with cancer now live beyond the five-year post-cancer mark.
Patti Morris knows those stats well. She’s the executive director of Wellspring Calgary, a non-profit organization offering supportive care to people living with cancer. More than 120 trained volunteers partner with leading oncology health professionals to deliver its wide-ranging programs and resources at Carma House, a 4,000-square-foot building on the banks of the Bow River. Carma was co-founded in 2006 by three Alberta cancer survivors, referrals aren’t required and there’s no fee for services.
Wellspring doesn’t draw lines to define who receives cancer support or for how long. “They can come at any phase and we welcome families and caregivers too,” Morris says. “Some walk in the day they’re diagnosed, some are still in active care, others have completed treatment. Many describe themselves as ‘survivors,’ although they use the term differently. They embrace the word, finding it a source of strength. Others prefer to say they’re thriving, not surviving.”
The biggest lesson Morris has taken from her experiences with cancer survivors – however they define themselves – is that cancer is highly personal. “It’s very different for everyone and people need to follow their own path. Cancer’s impact goes far beyond the physical, so we offer support from diagnosis onward, as much as needed, for as long as needed.”
Although the definition of “cancer survivorship” is a moving target, the most accepted one was adopted in 2004 by the U.S. National Cancer Center’s Office of Cancer Survivorship: “An individual is considered a cancer survivor from the time of diagnosis through the balance of life. Family members, friends and caregivers are also impacted by the survivorship experience and are therefore included in this definition.”
That’s quite a change from the dark days when cancer was considered incurable, when the word “survivor” was saved for the family left behind after the loss of a loved one. As outcomes improved in the 1960s, doctors began referring to those who lived five years post-treatment as “cancer survivors.” By the mid-1970s, survivorship hit a tipping point; for the first time in medical history, more than half of people diagnosed with cancer were expected to be around to celebrate what Kali Cousins and many other cancer survivors call their “second birthday” – the five-year anniversary of diagnosis.
The meaning of survivorship evolved as advanced treatments and earlier detection shifted toward success. By 1985, an American physician – and cancer survivor – named Fitzhugh Mullan drew attention to a neglected area in cancer care. “The challenge in overcoming cancer is not only to find therapies that will prevent or arrest the disease quickly, but also to map the middle ground of survivorship and minimize its medical and social hazards,” Mullan wrote.
Janine Giese-Davis, PhD, wholeheartedly agrees. “That statement really shifted the ground in cancer research,” she says. “Initially researchers focused on finding a cure while doctors were busy treating patients. But funding is also needed for a previously neglected phase of research – what happens after active treatment. So many issues arise that affect an individual’s physical and emotional health once the immediate life threat of cancer has passed. There’s a clear need to address this.”
The opportunity to concentrate on the life-beyond-treatment phase of survivorship is what drew Giese-Davis to Alberta in 2008 from a stellar 15-year career in psychosocial oncology in the U.S. In addition to her work at the University of Calgary and with psychosocial resources at the Tom Baker Cancer Centre, she now leads provincial research and evidence-based care focused on survivorship. This multidisciplinary team is called CancerBridges. The group has important research and programs underway see “More Pieces”, and is already drawing national attention to the needs of post-treatment cancer survivors.
Mike Lang, a cancer survivor whose own story was featured in Leap’s spring 2011 issue, is CancerBridges’ first survivor network coordinator. His personal goal is to ensure CancerBridges focuses on the practical needs of survivors and translates it quickly into new programs and services. While immersing himself in existing research literature on survivorship, Lang found something that jumped off the pages for him because it resonated with his experience: the two times when cancer survivors reported their highest levels of distress.
“The worst moment is when they first hear they have cancer,” says Lang. “But after that, the second-most stressful period is one to three months post-treatment, when survivors think ‘I’m done with this cancer thing, now I’ll get back to my life.’ But it takes time and effort, two years on average.”
Morris finds many of Wellspring’s cancer survivors call this difficult phase “trying to pick up the pieces.” (It’s also the title of a helpful book, Picking Up the Pieces: Moving Forward After Surviving Cancer, by Sherri Magee and Kathy Scalzo.) Survivors recount that during treatment their main focus is their disease. Friends and family rally round with support and patients draw comfort from them and the close attention of their medical team. Then treatment ends, caregivers are exhausted, and everything changes. Suddenly they feel alone.
“People got frustrated with what they considered my slow progress,” Kali Cousins remembers. “They just wanted me to be better once I was home.” Her circle of friends shrank to a small, understanding handful. She could no longer play sports; walking to and from the bathroom was a workout. It took a year for her hair to grow back, she had to isolate herself while her immune system rebuilt and, even when she felt physically strong enough to return to university, she was afraid she couldn’t handle it mentally. “We joke about ‘chemo brain’ but it’s real.” It took a long time to regain her memory.
“And every time I got a cold, or felt minor pain, I worried it could mean the cancer was coming back.”
At the same time, Cousins wanted no pity party. “I hated the ‘how-are-you?’ concerned head tilt, and being treated like a child. I tried to keep my survivorship as quiet as possible because, in my small town, so many people now knew me as ‘the cancer girl.’ I wanted an identity beyond that.”
At the Tom Baker Cancer Centre Cindy Railton, a nurse practitioner involved in clinical trials for breast cancer survivors at high-risk of recurrence, sees survivors who share similar experiences. As well, many breast cancer survivors need to continue endocrine therapy for five years after active treatment, which brings its own set of physical and emotional side effects.
“These women are coping with mood disturbances and residual effects from chemotherapy like fatigue and memory loss,” says Railton. “They may have new physical limitations or issues around sexuality and self-esteem related to body changes. Their visible scars are a constant reminder and can reinforce fears of recurrence. And there’s a 25 per cent higher risk of long-term clinical depression.”
The list of possible problems after active treatment has multiple categories: physical, emotional, financial, legal, sexual and/or spiritual. Railton says cancer survivors need time “to find their new normal.” But while they struggle to adjust, there’s huge pressure for them to bounce back to their old life. One survivor told her that her children wanted their old mommy back. She’s seen high-performers asked to step down from management positions because of memory issues related to chemotherapy. And she’s also seen survivors who, nearing retirement at diagnosis, were forced to return to work because their savings vanished during active treatment.
“I’d never have chosen cancer,” says Kali Cousins. “But if I could go back now, I also wouldn’t change anything that’s happened. I never realized before how amazing life is. Surviving cancer has given my life more meaning.”
“We also see these beautiful responses to cancer in survivors,” Railton says. That could be the realization that it’s time to embrace a healthier lifestyle, a shifting of priorities or a total change in life direction. “Others just want to put cancer behind them. Their feeling is, ‘Well, I didn’t need cancer, thanks for the experience but now I’m closing that door.’ And that’s OK too.”
Survivorship can be empowering. “You lose control of your life during treatment,” says Mike Lang. “Afterwards, you can choose how to live. It’s about making the rest of your life the best of your life.”
Just as there’s no one meaning for the term “cancer survivor,” there’s no right or wrong way to be a survivor. As Railton puts it: “The new message is that the post-treatment cancer care is a unique phase. And finally, it’s receiving attention. It’s not just cancer treatment and you’re done. There’s another step – and it’s important.”
“There are an estimated 100,000 surviving cancer patients in Alberta,” says Janine Giese-Davis, PhD. “A certain percentage are well-supported, but many others need more community support.” As director of CancerBridges, the new provincial survivorship research and care organization, Giese-Davis outlines initiatives and programs underway.
cancerbridges.ca is an evolving source of information. Look for its Myths of Survivorship video series, weekly blogs, a summary of CancerBridges survivorship research (results or in progress) and other resources.
From Cancer Patient to Cancer Survivor: Lost in Transition (2005) is a powerful report from the Institute of Medicine and National Research Council’s Committee on Cancer Survivorship. (Read it online at www.nap.edu/catalog.php?record_id=11468.) One of its key recommendations was that all patients receive a survivorship care plan at the end of active treatment that includes a summary of treatment, a detailed plan for long-term care, a list of survivor support services and tips on preventing recurrence. The first major project of CancerBridges tested the use of similar care plan packages for breast cancer and head-and-neck cancer survivors.
Survivorship support and resources in rural communities are more difficult to access. A CancerBridges Rural Survivorship program is planned that will connect post-treatment rural survivors with nurse navigators and survivor peers for ongoing support.
The use of a virtual clinic is underway. Cindy Railton, a nurse prcaticioner at the Tom Baker Cancer Centre, is testing it to see if online support will encourage breast cancer survivors to continue their recommended post-active treatment.