Editor’s note: On May 9, ELLICSR hosted For Me With Me: A Forum for People Affected by Cancer. We invited people who’ve been impacted by cancer to come share their experience, learn from others what helped them, and work with us to begin to revolutionize the cancer experience. Late in the morning, we broke into smaller groups to share experiences and build a toolkit to help others. ELLICSR bloggers sat in on each session. Here’s what they experienced.
Are you the type of person who likes to have all of the information right away or would you rather get it in pieces as you need it? Is there such a thing as too much information when it comes to a cancer diagnosis and navigating your way through the health care system?
One of the puzzle pieces decorated by a participant at For Me With Me
At For Me, With Me, I was part of the “Get Informed” breakout session. The participants in our group each shared a story about how they looked for information about their cancer diagnosis and treatment plan. We also took part in a hands-on activity where each person took a large puzzle piece and used words, pictures or mixed media to express a time when they had the right information and also a time when they felt they didn’t get the right type or amount of information at the right time.
The cancer survivors in the session were quite a diverse group in terms of where they were in their cancer journey. One participant had been treated for cancer more than once, another was in remission, while others were newly diagnosed and looking to gather as much information as possible to help them through treatment.
Collectively, the group felt that information about their cancer and treatment options was often confusing and even contradictory. Several participants felt that the terms that are used by the health care team are not understood by patients and misunderstanding of terms or information can create unnecessary stress. As health care providers, we need to take the time to explain terms and ensure patients and families are given information in a way they can understand it.
Other cancer survivors talked about some of the barriers they experienced when trying to ask their health care provider questions. Time constraints during doctor appointments, not wanting to feel stupid for not understanding, or feeling overwhelmed by their diagnosis or the need to make a treatment decision were some of the barriers they mentioned.
So what helped this group of well-informed cancer survivors navigate the most challenging journey they have ever faced? Each person seemed to seek out information in his or her own unique way. One individual found she was too overwhelmed to take in verbal information, but collected patient education pamphlets on a variety of topics so that she could read them and review them at her own pace. Another person said the
Patient & Family Library was his haven, where the librarian and volunteers helped him find the information and support he was looking for. It was at one of his visits to the library that he learned about the
Canadian Cancer Society’s Peer Support Service, which provides telephone support for cancer survivors, from cancer survivors. Many of the group members felt that in addition to the medical information they received, the information they gathered from others who had been through a similar experience was invaluable.
The key pieces of the puzzle that the cancer survivors shared on how to get informed are simple yet powerful:
Seek out support in the way you find most comfortable. Talk with others who have been through it. Telephone, online or in-person supports are all available. For example, one participant found that going to support groups at
Gilda’s Club was extremely helpful in letting her know what to expect on her cancer journey and for getting the social support she needed. On the opposite end of the spectrum, another person took to
Twitter to interact with other cancer survivors, share stories and ask questions.
Talk to the people who care about you. Surround yourself with positive people and learn to “tune out” the negative ones.
Ask questions. And then ask more questions. Write them down and bring them with you. If you don’t have a question, ask “What do other people usually ask about this?”
Don’t be afraid to ask for a second opinion.
Reflecting back on our session, it was fitting that our group’s activity was a puzzle. We all gather information in our own way and piece it together in a way that makes sense to us and helps us to have conversations with others and to ask questions when a piece of the puzzle is missing.