One family’s journey after mom’s diagnosis.
In June 2013, Kristen Knott, then 42, attended her daughters’ weekend dance recitals. Fueled with the energy and excitement of the performers, she watched her girls dance beneath the bright lights – embodiments of grace, youth and vitality. Choking back tears, she was overcome with both joy and fear. “They have their whole lives ahead of them,” she thought. “I hope I have mine.”
That Sunday, she called a family meeting. Waiting nervously in her backyard, she watched as her stepchildren, Josh and Natasha, and daughters from a previous marriage, Eden and Zoe, emerged from the house. On hand for moral support were her husband, Jonathan, and her mother and stepfather.
Beneath the hopeful glare of late spring sunshine, Kristen told her kids she had been diagnosed with breast cancer after finding a tumor in her right breast. She discussed details of an upcoming surgery to remove her tumor and explained that pending test results would likely determine that she needed chemotherapy and radiation as well.
Twelve year-old Eden immediately covered her face, erupting in a cloud of tears, while 10-year old Zoe fell into a trance-like state, staring blankly ahead. Together, their parents explained the process the family would witness, but reassured their children that family life would remain as normal as possible. “I’m not going anywhere,” Kristen told them. “I’ll still be yelling at you to pick up your lunch pails. I’ll still be at your weddings,” she finished, attempting to banish any of her children’s fears.
Despite the range of emotions flowing through her family, she felt an overwhelming sense of relief at sharing the diagnosis.
Discussing a cancer diagnosis with the family is an experience mirrored in thousands of Canadian homes each year. According to the Canadian Cancer Society (CCS), around 2 in 5 Canadians will develop cancer in their lifetimes and 1 in 4 will die of the disease. In Ontario alone, it’s estimated 73,800 new cases of cancer will be diagnosed this year. With cancer prevalence at its peak, thousands of families across the country face a common burden.
Communication and access to proper resources are critical in helping both the patient and their family cope with a diagnosis. When a parent has cancer, “The most important thing is to be honest with your children, because no matter the age group, kids can sense if there is stress,” says Anita Record, Unit Manager of CCS’s Peterborough & District Community Office. “Be honest, but express it in the appropriate language.”
That means providing fact-based information in a calm and reassuring way, says Wendy Odell, a social worker for the Patient and Family Support Program at R.S. McLaughlin Durham Regional Cancer Centre. “Encourage dialogue and be open to questions. Tell your kids, ‘No questions are off limits. If I don’t know the answer, I’ll find out for you.’”
Kristen laughs when she recalls Zoe’s first three questions after learning of the diagnosis. “She said, ‘Mom, how long is this going to last?’ ‘Will it change you?’ and, ‘Do I still get to have my birthday party next weekend?’”
While staying positive and optimistic most of the time, Kristen shared her low-points with her children as well. Weak and exhausted on her first day of chemotherapy she spent the day vomiting, a sight that scared her children. She explained what was happening to her body, and that even though she looked sick, the treatment was helping to make her better. Jonathan provided the kids with scientific explanations of how cancer works and what happens in the body, making the experience an educational one too.
Kristen was also honest with her kids on the days she felt sad, unattractive, and unwell. “It’s okay to be sad in front of your child,” says Anita Record. “It models that being emotional is okay and normalizes that for kids.”
Before telling their kids about the diagnosis, the couple had informed both their parents, and the parents of their children’s closest friends. In doing so, they began building a network of support. “You have to use your village,” says Kristen, reiterating important advice she received from a friend and fellow cancer survivor.
Her “village” included friends, neighbours, colleagues and family who provided help in all sorts of ways. One neighbourhood friend organized a weekly meal schedule over six rounds of chemotherapy, eliminating the stress of having to prepare home-cooked meals and enabling more family time. Jonathan often fed the kids and made arrangements to get them to their activities. And her mom spent quality time with the kids.
A self-proclaimed control freak, Kristen acknowledges that it can be difficult to accept help from others, but the biggest thing she has learned is how much you need other people.
“Reach out for that help and accept it if anyone is offering it,” says Nancy Sinopoli, Community Services Coordinator of the Peterborough branch of the Canadian Cancer Society. “It’s not selfish to accept it. It’s not selfish to put yourself first. You’re putting your family first by putting yourself first.”
Jonathan and the kids also had outside supports. “Every member of our family had somebody to talk with,” says Kristen. “You need somebody outside the family who you can process with, or just be normal with, talk about it or not talk about it.”
Her deepest fears, however, were reserved for her husband. “You need someone you can be completely honest with about your fears. Jon was probably more worried than I ever was, but he did a good job at keeping that to himself.”
Outside support also includes counseling and resource services available from hospitals, clinics, and various community organizations (see sidebar). As a social worker, Wendy Odell helps families deal with the emotional and practical impacts of cancer, connecting them to community supports and resources depending on each family’s needs. Kristen and two of her daughters saw a therapist at the hospital where she received treatment and she also connected with fellow cancer patients, joining a women’s support group.
“Connecting with others who have been through what you have normalizes and validates your experience,” says Odell. “You recognize, ‘It’s okay, there are other parents who are unable to do all the things they used to.’ It’s also a good place to get ideas, and the support you need to talk about it.”
Peer support helped Kristen open up about her experience. “Don’t be quiet about it,” she advises. “I know women who didn’t tell anybody about their diagnosis. You’re entitled to handle it how you want, but I think it would be very sad to be private about it. Use your support group, leverage them, they need to feel needed and you need it.”
Today, Kristen is cancer free. She has resumed her position as Director of Pangaea Consultants, a pharmaceutical company, but is working part-time. Her diagnosis and recovery were a reality check to slow down, smell the roses and enjoy the small things. While the experience brought its series of challenges, she says, ultimately it has brought her family closer.
More than a year after her diagnosis, Kristen and her family travelled to Hawaii, a dream destination symbolizing well-being. On the shores of the North Pacific, she gave thanks for her health, and for the unconditional love and support of her family and friends who helped make it possible.
Resources
1. Hospitals. All hospitals across Ontario that treat cancer patients offer counseling and patient support programs that you can ask your doctor about.
2. Support Groups: Meet with adults who have cancer and caregivers for educational and informal group discussions facilitated by trained volunteers who are also living with cancer. Groups are community based. Some are specific to one type of cancer while others may offer general support for people living with cancer. To inquire about support groups in your community, call 1-888-939-3333.
3. Canadian Cancer Society: CCS connects patients with support groups, doctors, and peers in their community. Provides information and links for specific types of cancer. Arranges transportation to and from hospital/clinics for treatment. Has a telephone cancer information service, which provides parents with a list of local community resources, including help communicating with their child. 1-888-939-3333.
4. WellSpring: A network of community-based cancer support centres that collectively offer over 50 different programs. Wellspring provides support, coping skills, and education – at no charge and without medical referral – to individuals, family members and professional caregivers living with cancer. www.wellspring.ca
5. Cancer Chat Canada: Online support groups for people who have cancer and their families. www.cancerchatcanada.ca, 1-800-663-3333 x 4965
6. Hospice Peterborough: Offers a variety of booklets parents can access to help explain to their children what a cancer diagnosis is and means. Hospice also offers a variety of programs and phone support lines to help patients.
