I’m Alive. What Now?

Provincial program helps teach survival skills

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HIS STORY: Mike Lang has spent the years since his own cancer diagnosis working with young cancer survivors.
Photo by Brian Buchsdreucker

Don’t tell the thousands of survivors in Alberta that cancer is a death sentence.

In reality, advances in research and treatment have meant that many types of cancer have extremely high survival rates, so much so that the medical community is starting to treat some cancers as almost chronic in nature, akin to asthma or diabetes.

Today, about two in five Canadians can expect to develop cancer in their lifetime – and more than half of the new cases will be lung, breast, colorectal and prostate, according to Canadian Cancer Society statistics. And though five-year, relative survival rates for lung cancer are low at about 17 per cent, the five-year survival rates for colorectal cancer are at 65 per cent, while breast and prostate survival rates are high, at 88 per cent and 96 per cent survival, respectively.

“When I was first diagnosed,” says survivor Nikki Battle, “everyone cared. But when I didn’t die, some workmates started feeling uncomfortable, as if asking ‘Are you still here?’ ”

For cancers overall, that means that 63 per cent of Canadians with cancer are expected to survive five or more years after diagnosis. While the focus for cancer care across the country has traditionally been on treatment, the large numbers of survivors – 120,000 in Alberta alone – has meant a need to reassess where time and effort for care should be.

Enter Dr. Janine Giese-Davis and Mike Lang who, in co-operation with Alberta Health Services, the University of Calgary and thanks to generous funding from a cancer survivor, came together to create CancerBridges, a province-wide program with a focus on surviving cancer. Through practical, educational presentations for survivors, families and medical professionals, as well as an information-rich website with calendar listings for events across the province and links to survivorship videos, CancerBridges offers just that – a bridge from treatment back to regular life, a link to a new normal.

“CancerBridges started by laying a research foundation for program development, and the program arm has become a hub of activity for survivorship – a way of living with and beyond cancer, and all the issues that come with it,” says Lang, himself a five-year survivor of Hodgkin’s Lymphoma. “We’re all about how to make the rest of your life, the best of your life.”

Lang walks the talk – using the years since his treatment to work with young adult cancer survivors and creating films including Wrong Way to Hope: An Inspiring Story of Young Adults and Cancer, Ebb & Flow: Storytelling for Cancer Survivors, and Valleys. The same is true for the Survive & Thrive Expeditions, adventure trips Lang and his wife, Bonnie, co-ordinate for cancer survivors and caregivers to reflect, refocus and rebuild their lives in a way that is meaningful to them. Through the trips, films and with his work as survivorship program co-ordinator for CancerBridges, Lang is tapping into the cancer survivor’s need to share and be heard, and to engage and be an active participant in his or her own life.

“We aim to normalize the experiences cancer survivors have – the depression and anxiety – dealing with that guilt, fear and uncertainty about the future,” Lang says. “At presentations, we allow space for the negative, but enhance the good stuff. It’s empowering and inspiring for people to know they’re connected to a bigger community – not alone – the seminar is really an intervention in itself.”

A TEAM:Mike Lang and Janine Giese-Davis are helping cancer survivors how to make the rest of their lives the best of their lives.
Photo by Brian Buchsdreucker

Nikki Battle calls Mike Lang her cancer hero (along with Terry Fox), as both were fighters who became part of her life and motivation about two-and-a-half years ago, when she was diagnosed with stage four metastatic breast cancer that had already spread to her liver, lungs, bones and lymph nodes. Living with cancer, Battle had the same questions and concerns as most patients: How long will I live? How do I deal with others
who expect me to stay positive when I don’t feel like it? Am I now supposed to live some sort of superhero life, making every moment count? How about handling the return to work?

“When I was first diagnosed, everyone cared. But when I didn’t die, some workmates started feeling uncomfortable, as if asking ‘Are you still here?’ ” Battle says. “CancerBridges is so important – the videos, the presentations, the tears and the morbid humour – it’s patients helping other patients who are going through the same things that is so critical. I leave these sessions feeling some hope.”

Battle says Lang’s Myths of Survivorship videos were of particular help as she dealt with the sense that she must have done something wrong to get cancer – a common, blame-the-victim assumption.

People are living longer – treatment is effective. Now the cancer care world has to move along the same path.

“People don’t do that with any other illness – just cancer. Or they ask, ‘How long do you have?’ They think you’re either cured or you die; nothing in between. Since I entered Cancer land, I feel I’m a cancer mascot – my job is to educate others. I should write a book on ‘things not to say to people’,” Battle says.

The CancerBridges patient-centred website and half-day seminars have benefitted more than 1,500 survivors and families to date, addressing the issues that matter to them – coping with depression and “brain fog,” diet and exercise, handling the return to work, and maintaining healthy relationships.

While essential grassroots work has been done for cancer survivorship in Alberta, the challenge now becomes how to integrate patient education and outreach into the cancer care delivery system. To that end, AHS (through Cancer Control), has struck a provincial steering committee to identify current supports and services that exist for survivors, and then create a framework – a priority action list – of how to make tangible changes to the system.

“The aim is to build upon what CancerBridges has created, and find ways for all areas of the health care system to communicate with each other, whether someone is in treatment or just finished, or living well beyond cancer,” says Linda Watson, leader of Interdisciplinary Practice with Cancer Control Alberta. “If I’m a patient in Peace River, for example, I want the same access and support as someone in Lethbridge.”

The steering committee includes members from Cancer Control, CancerBridges and Wellspring Calgary, as well as representatives from pediatric oncology survivor programs at the Stollery and Alberta Children’s Hospitals. Members also come from the Cross Cancer Institute and the Tom Baker Cancer Centre, plus those in primary care, medical oncology and chronic disease management. Patients and families are part of the team, too.

“We’ve never collaborated across systems this way,” Watson says. “We don’t know what needs survivors may have over time – physical or psychological – but we have to build the system so it’s there when they do need it.”

Some 17 sites are flagged to deliver services to cancer patients from across Alberta under the Cancer Control division of AHS, primarily the Cross Cancer Institute and Tom Baker Cancer Centre, but also associate sites in Grande Prairie, Medicine Hat and Lethbridge, and more than 10 smaller centres in local hospitals around the province.

5 Responses to I’m Alive. What Now?

  1. Karen Robson says:

    A cancer diagnosis and the subsequent treatment never leaves you so I value and appreciate receiving the Cancer Bridges publication and now LEAP as well. Being able to hear other people’s stories and their comments really helps you because you find out it was was not just me being hypersensitive to how people were behaving or talking to me … I am not the only one feeling this way. People saying the wrong things, smothering me and treating me like I no longer had a say in aspects of my life …. that is the way other cancer patients felt as well. Who would have known we often experience the same feelings … we really are all so similar in our reactions and sensitivities as to what is going on around us with our family and friends.

  2. Jodi Mantey says:

    This story is excellent. I wonder why I have never heard of this program? I’m really struggling with this. I have stage 4 pancreatic cancer, it’s been “sleeping” for a year ….how do I move forward? I’ll look this program up on line. I’m so glad this story was published!

  3. Kim Lou says:

    Any thoughts on some day making Cancer Bridges a nation-wide thing? This is such a wonderful step forward in supporting the cancer journey. People who don’t experience cancer don’t understand that not every situation is as simple as getting diagnosed, going through treatment, then either dying or being cured. I’ve been living with diagnosed cancer for 8 years now (we suspect I’ve had it for over 15 years). If my life isn’t in immediate danger, people assume I’m okay because I “don’t look like” I have cancer. They don’t understand that there’s A LOT of emotions to process. Including doctors. You get left on the sideline as a survivor, you’re not longer a priority, and in my case, I’ve found myself in a bit of a no-man’s-land where nobody knows who my primary physician should be or who I should call if I have any concerns. As we increase cancer survival rates, the systems and society needs to adapt to those of us who are basically cancer veterans. We’ve been through our own brand of war, we need help to cope with what that means for our future well-being. I am happy that someone has come up with a strategy to do just that. Some day I hope this spreads across Canada and becomes available to everyone.

  4. Susan Lehman says:

    When I was first diagnosed with cancer I was panicked. I felt it was the beginning of the end. I had so many questions and fears. One week after my diagnoses I received a call from a cancer navigator nurse. What a gift she was. She answered all my questions, directed me to reputable sites on cancer, provided me with information and workshops and set up appointments. She set the ball rolling and I was delighted to find a great deal of help and sharing regarding the journey with cancer one experiences. I am so grateful for the support and help I have received and feel optimistic about my future.

  5. Pingback: Survive & Thrive Cancer Programs » Spotlight Post!

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