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Joanne M

 
Joanne M

Joanne MacPhail, co-chair of Cancer Care Ontario’s Patient and Family Advisory Council, knows that if you want to make Ontario’s cancer system better for patients then you have to ask the people who have themselves faced the physical and emotional challenges that this disease entails. “We, the patients along with our families, are the faces of cancer. We have experienced the drugs running through our bodies, the surgeries, radiation and the side effects.  We have dealt with it all, and we have a story to tell,” she says. 

As a 2-time cancer survivor, Joanne speaks from personal experience. Her first bout with an aggressive form of breast cancer in 1993 was filled with extreme anxiety. “My oncologist saved my life, but he wasn’t very forthcoming with the information that might have helped me prepare for what was to come. He though too much information would add to my stress, when it was the lack of knowledge that actually caused high anxiety,” she recalls.

When her cancer returned in 2008, there was a dramatic improvement in the level of communication with her healthcare providers. “They spent a lot of time explaining the nature of the tumour, my treatment, etc. Even though some of the information was scary, it was reassuring to know that I could ask questions and get the answers. I felt more a part of the team.”

Still, she saw gaps in her care. “The lack of integration of care among the various departments was very frustrating. I wanted to stand in the middle of the hospital and scream, ‘Will somebody please help me!’”

That impulse to push for change propelled her to work on the development of this Ontario Cancer Plan. “I saw an opportunity for patients, like me, and family members to assist in improving the patient experience by lending our voices to help transform the health system. We have excellent resources and people, but we need to change the system to look at it from point of view of patients and their families.”