Helping People Living With Cancer Find Their Compass

Lynsey Kitching

Cancer is a disease that has touched most of us in some way or another. Those who are on the front lines of supporting patients and their caregivers, have to re-live experiences every day, through the positive and the negative.

The Canadian Cancer Society (CCS) is one of the many organizations in Canada whose main objective is to find support for those living with cancer and those who care about someone who is on a cancer journey.

Janet Canavan is the Manager Peer Support, Ontario division for the CCS and has been with the organization for 14 years. This year is the 75th anniversary for the organization.

“In Ontario, we offer one to one, group and online support services. When we define peer support it’s people who have had a cancer experience who are willing, when past that experience as a patient or they’ve cared for a loved one, to then turn around and support someone else,” says Canavan.

She continues, “We make sure that they’re emotionally well enough and ready to support people who have just been diagnosed and who are starting out on that cancer treatment journey.”

Peer Support is available nationally through the CCS and encompasses people who have had similar experience, providing support and information. Not unlike, if you’ve had a bad day and you pick up the phone and call a girlfriend. You have someone to talk to, someone who has been there.

Canavan says, “Cancer is over 200 illnesses and it is probably always going to exist, so there probably won’t be one overarching cure for cancer but research and advanced techniques are going to contribute to quality of life for people who are diagnosed. When we talk about patients living with cancer, we have to talk about their caregivers and family because everyone is on that journey together.”

The Peer Support program is there to help give newly diagnosed or people living with cancer, or caring for someone with cancer an opportunity to talk with someone who has been there, who knows what they are going through, and who can provide them with resources, advice and a listening, non-judgmental ear. “We’ve found that sometimes when people are diagnosed with a life-threatening illness it can be really impactful to speak with someone who has gone through that journey and who is now doing well.

The conversations are so valuable in terms of encouragement, support, empathy, and resources. Clients might mention things to their volunteer they might not mention to others because they don’t want to scare them or think they won’t understand.”

In BC and the Yukon through the CCS there was $5.7 million invested in cancer research in 2011. Due in part to this research, over 60 percent of people will survive cancer today compared to 25 percent in the forties.

It is these survivors who become the peer support volunteers. “It’s amazing how two strangers can be matched and they know nothing about each other. Then, as the match carries on, they become comfortable with each other and are able to share cancer experience stories, that line is erased,” says one Peer Support Volunteer.

In order for these matches to be made, someone has to be the first line of communication. These people in Ontario are Canavan and her staff of four. “What I find I really appreciate is that when I started, I was doing the role of the team I now manage. I find it valuable and I appreciate having that experience for five years of being on the phone Monday to Friday 9-5, not knowing what the next call is going to be about; having all of the stories in our heads. I think I’m able to be a more coachful manger by having the experience of doing their role,” explains Canavan.

Nationally, the CCS has over 1,300 volunteers, both people who have survived cancer themselves, or who have cared for a loved one. “We search to find a volunteer that really resembles what our caller wants support for. It could be a woman diagnosed with breast cancer and is going to have a mastectomy, but might also be considering re-constructive surgery. She might have young children, worried about her job, finances, some of the self-esteem appearance issues. Multiple support needs. The staff is trained to find out what are the most important support needs for that individual at that time and get them to the right volunteer,” says Canavan.

Without these volunteers the program and the support wouldn’t be possible. “We need to be always recruiting a volunteer base. Ontario does over 40 percent of the matches across Canada. Having a diverse and active volunteer base is critical to being able to provide the support. Our volunteers understand the value of speaking with someone,” she explains.

The people receiving the support also appreciate its value. One peer support client says, “It was like providing a compass to a sailor lost on a stormy ocean. Now I know where I am… and how far to a safe port. Without this information it would be easy to give up after fighting this terrible disease for a year. I know what to expect. Your “compass” has given hope again. Thank you. Thank you. Thank you.”

The support being given by the CCS comes full circle back to the first line of defense and their support needs. Canavan says, “The CCS provides an employee assistance program. But we also offer debriefs, networking, and staff can talk to me confidentially. We try to build in self care. We all have triggers. One in three people are affected by cancer in their life-time so it would be unusual to have someone working here who doesn’t have an experience in their personal lives. The staff knows if they do have an emotional call or a difficult call or the client they are speaking to may be in a crisis, they know they can take a break and talk,” she continues, “An employee probably speaks to hundreds on hundreds of people every year. We had 1,900 ongoing matches in Ontario last year alone. Our staff has touched every one of those people. You don’t want people to burn out. That’s why I really respect what our volunteers can do. To be able to turn around and put their hand out to others, given that they’ve been through that experience. Some of our volunteers have supported over 100 people and every time they phone someone they are reliving their own cancer journey, but they are using it in a powerful and cathartic way.”

With all of the support being given to and provided by the CCS, one can’t help but wonder where the organization is going next and how research is helping. Canavan says, “Research has really contributed to people’s quality of life in terms of treatment protocol, reduced side-effects, extended life spans. We know that the world health organization has announced that cancer is considered a chronic condition. We know that over 50 percent of cancers are treatable and preventable. We hope people are listening about early detection, screening, prevention, life-style, non-smoking, reduced drinking, exercise, all of those things,” she continues, “Moving forward I believe that when people today start getting that message, there will be a deduced rate of cancer incidences just by managing our quality of life.”

The CCS has started to incorporate the internet into their support programming. Canavan explains, “We have found we probably need to engage technology a little more. We started our online community, cancerconnection.ca in 2011 and it’s the only Canadian online community for cancer. It just won a national award.”

Another new program provided free by the CCS is the Living Well Beyond Cancer survivorship program. Canavan explains why this stage is an important one on the cancer journey. She says, “Once people finish their treatment for cancer and they are back in their communities, it’s like ‘so now I have this new normal, I’m not who I was before,’ there isn’t an awful lot of programming out there for this stage, and no one can look at someone and know how they feel.”

Canavan though she loves what she does, wishes her position at the CCS didn’t have to exist, “It’s too bad we have work to do. It is work we are doing and I believe most of the people here are passionate about what they do. The worst thing for us to hear is I wish I had heard about you when I was going through it. If there is one message, it’s pick up the phone and call. We can help you.” For more information about the programming at the CCS please call the Northern BC office in Price George at 1-800-811-5666, 250-564-0885 or visit www.cancer.ca.