On November 22nd, CCSN hosted an All Party Cancer Caucus meeting with members of the Ontario legislature at Queen’s Park, Toronto. Present were representatives from patients and medical professionals, CCSN staff and board members, and volunteer Jaymee Maaghop. The meeting raised awareness and launched crucial discussion on the scarcity and disconnection of rehabilitative services in the cancer care continuum.
CCSN CEO Jackie Manthorne introduced the Caucus and this session’s theme, rehabilitation after cancer.
“There are numerous challenges that patients experience after cancer treatment such as the fear of cancer recurrence, physical side effects of treatments, re-entering the work force, financial difficulties, and mental health,” says Manthorne. “Rehabilitative programs can address these and aid patients in achieving the best quality of life possible.”
Dr. Sara McEwen is a scientist at St. John’s Rehab Research Program Sunnybrook Research Institute and an assistant professor in the Department of Physical Therapy and Rehabilitation Sciences Institute at the University of Toronto.
Rehabilitation, for Dr. McEwen, is about the development and implementation of a very personalized agenda of health care goals created by patients, with the support of rehabilitation professionals.
“The research tells us that cancer rehabilitation is effective, but access is poor. It was great to see representatives from all parties engaged in a process aimed at changing this,” says Dr. McEwen.
She was previously involved in physical therapy for stroke rehabilitation. Having research and experience in rehabilitation for both stroke and cancer, she sees disproportionate differences in healthcare services, information and education available between the two.
“We know that exercise is implicated in reducing fatigue, improving functional capacity, physical capacity and we even have some evidence that exercise improves survival outcomes in certain populations,” she says. Exercise is only one of the branches of rehabilitation and has potential to impact all cancers and throughout the stages of cancer care treatment.
Doug Nugent, who is a prostate cancer survivor, delivered his experience and reflections on the unequal distribution of rehabilitative services in Ontario. He is a member of various support groups, such as the Board of Directors for the Prostate Cancer Canada Network Ottawa, and is part of The Eastern Ontario Prostate Cancer Awareness Committee. He resides in Morrisburg, a small town south of Ottawa by the St. Lawrence River.
Nugent’s rehabilitation experience was very positive. He received support with ongoing care from various resources. But from talking to other prostate cancer survivors, he found that rehabilitation is hardly available or even thought of. Rehabilitation varies in availability and medical quality of resources. This means that not all communities have services and information available. This problem is the most apparent in rural areas of Ontario.
As a result, Nugent seeks for a standard protocol with hospitals and doctors such as follow-up meetings and rehabilitative services. “They have their surgery and they’re basically on their own after their surgery,” Nugent says.
“I don’t consider myself a survivor. I am surviving because every day it is breast cancer awareness. Every day is what I have to navigate.” These are the words of Eileen Dahl, a metastatic breast cancer patient, caregiver and a registered psychotherapist. She has previous medical experience as a hospital Chaplin at the Toronto General.
“Because of the cancer, my bones were fragile and I was at risk for spinal compression fractures and bone breakage. I was told not to lift more than 10 lbs. As a mom in my mid 40’s, that meant I could no longer lift a full grocery bag, a carry-on suitcase, my hefty cat or my [five-year old] child. I was told the only activities I could do were walking and swimming,” Dahl says.
But bone metastases can last for an indeterminate amount of years. So Dahl went out to find ways on living with bone metastases. However, she discovered that there is hardly any information on living with bone metastases that allows her to continue with her normal lifestyle. Determined to continue living her life to the fullest, she sought resources and became an independent researcher and advocate for resilience and health.
Dahl highlights that it is important to recognize bone metastases can materialize not only in breast cancers, but other cancers as well. These are prostate, lung, kidney and thyroid cancers.
Mona Forrest, of the CCSN Board of Directors, talked about the rehabilitation she was able to access after her heart operation earlier this year, including physical therapy in a fully equipped hospital gym supervised by physiotherapists and nurses; meetings with a rehabilitation doctor, and nutrition, self-care and other 6 to 10 week sessions. She said she knows that cancer patients are not offered this rehab, which was very important to her recovery. She especially mentioned concern for cancer patients with lymphedema, whose recovery or adequate care and adjustment depends on their personal finances.
MPP Members of the All-party Cancer Caucus are Liberals John Fraser, Ann Hoggarth, and Ted McMeekin, Conservatives Jeff Yurek, Michael Harris, and Lisa Thompson, and for the NDP, Frances Gélinas, Percy Hatfield, and Monique Taylor. Members present asked questions of all the patients, made some suggestions, and shared some of their personal experiences with cancer.
Cancer Care Ontario has recognized rehabilitation in their Ontario Cancer Plan 2015-2019 but the action plan has not yet been outlined. However, Members of Provincial Parliament that attended the caucus meeting have expressed their support and look forward to holding discussions with CCSN and other organizations in the following year. They agree to the need for raising awareness about these gaps in cancer care and the development of initiatives from there on.