Cancer is gone, but not the pain
Report highlights emotional, physical challenges patients experience after treatment is complete
A few months after being diagnosed with colon cancer and undergoing surgery to remove part of his bowel, Jim Beattie slipped into a “black hole” of depression.
He was living with chronic pain, fatigue and in fear of cancer returning. And, he had stopped buying flower seeds — a worrisome sign for this avid gardener who loved tending the yard of his Leaside home.
“I was feeling hopeless, bereft,” recalls the 69-yearold retired technology consultant. “I felt very, very sorry for myself. I didn’t have any clear vision that there was a future.”
He’s not alone. The emotional and physical challenges that cancer patients experience after treatment is highlighted in a recent report by the Canadian Partnership Against Cancer. It includes findings from a first-of-its-kind survey of 13,000 Canadian adults on their experience, within the last three years, of transitioning between oncology care to the broader health care system.
Among those surveyed, 80 per cent reported physical challenges, with increased fatigue and changes in sexual function and fertility as their biggest concerns; 70 per cent struggled emotionally with depression, changes in sexual intimacy and fear of cancer returning; and 40 per cent had practical difficulties, such as returning to school or work, and financial woes such as paying health care bills.
Despite this, 51per cent did not seek help for physical issues, and 34 per cent didn’t seek emotional support, because they were told that what they were going through was normal. And nearly a quarter sought no assistance for practical challenges because they didn’t want to ask.
The report serves as a wake-up call, says Esther Green, director of Person-Centred Perspective at the Partnership who helped write it.
“I don’t think the heath-care system understands what the issues are and what cancer survivors face after treatment is over. And I think the general public thinks, ‘You’re better now, move on, get back to your life.’
“There is no normal they can go back to. It’s a whole different experience as they move forward,” she says, noting some suffer from debilitating symptoms such as anxiety and depression.
Green says more needs to be done to help patients manage post-treatment, noting more than one million Canadians are currently living beyond cancer treatment — a figure that will only increase as treatment improves and the population ages.
Across the country there’s a patchwork of care, she says, with urban centres better serviced, while some in rural or remote communities are “suffering in silence.”
To fix these gaps, she suggests more online support groups and ensuring that health care providers are aware of existing resources so they can refer patients. And there are places that can help, she says. For example, the Canadian Cancer Society has peer support volunteers, Cancer Chat Canada runs online support groups and Wellspring, Gilda’s Club Greater Toronto and Hearth Place are support centres offering various programs.
“If you’re told nothing can be done, you just shrug your shoulder and walk away,” she says. “The reality is that some things can be done. The challenge is how can we help survivors use their voice to say, ‘No, it’s not OK to be told it’s normal. There must be something else that can be done. Where can you refer me?’ ”
After Beattie’s surgery in 2011 — doctors successfully removed the cancer, but surgical complications required followup procedures — he needed coping strategies, but says health-care providers didn’t point him in the right direction.
“Cancer patients are treated for the physical problems, but not the emotional problems and psychological impacts.”
And the scourge of cancer can be unrelenting.
“I couldn’t get away from the medical machine,” says Beattie, who underwent regular checkups for five years to see if the cancer had spread or returned. “It was a fairly traumatic time.”
His wife Mary was his source of support, but she knew he needed more. He turned to his family doctor, who recommended a psychiatrist.
“(The psychiatrist) didn’t seem to have any interest in (the cancer) or think that was much of an issue,” Beattie recalls. Instead, the psychiatrist suspected Beattie’s problems stemmed from never having had children.
“That was a big thing: I don’t have children so my life is incomplete. It all sounded crazy.”
Unable to get adequate support from his family doctor, he told his surgeon about his feelings of hopelessness.
He was referred to a different psy- chiatrist, who diagnosed Beattie with a form of post-traumatic stress disorder and suggested an eight-week mindfulness-based stress reduction program. But Beattie didn’t attend because he was in a lot of physical pain and it seemed like too big a time commitment.
Through a chance encounter with a neighbour, Beattie learned of Wellspring, a network of communitybased support centres that offer free programs to cancer patients and their caregivers to help with emotional, social and practical needs. Programs include financial advice, cooking lessons and exercise classes.
After a year of grappling without support — apart from his wife — Beattie joined Wellspring and signed up for meditation, yoga and relaxation classes. Eventually, he “turned a corner.”
“I found myself looking at a packet of seeds, and going, ‘Hmm, I should think of planting these.’ That’s when I realized I’d gotten my future back.”
Barb Riley, the manager of Wellspring Westerkirk House, located on the campus of Sunnybrook Health Sciences Centre, says the end of treatment is “not the end of the road” for patients.
“The hospital gives them a routine and they follow that. But once that routine ends and the treatment is finished and the hospital says you’re done, we find that many people fall apart after that because they don’t know how to adapt with the new normal they’re dealing with.”
“It can be lonely and isolating and they don’t know how to move forward. Often what I’ve heard from members is that the loved ones around them say ‘You’re finished treatment. You’re fine now. Get back on your feet and keep going.’ And for many people it’s not that simple.”
Some, she says, have stopped going to work or school and are stuck at home, lonely and isolated, with nothing to do. And some are still dealing with physical side effects from treatment.
“This can be a really safe place for people to come and just talk and tell their stories, which they might not always be able to do with a loved one,” Riley says, adding Wellspring works with hospitals to make them aware about its programs.
For Beattie, Wellspring continues to be a safe place. In addition to being a member, he’s also a peer support volunteer.
“It’s enabled me to get my life back into good shape,” he says, adding he now looks forward to a future with countless hours in his yard.
“I’m making plans to do all kinds of things in the garden. One of my big problems is I’ve planted trees in all the wrong places and now I need to take them down.”