More: Why did you decide to get involved with Count Us, Know Us, Join Us?
Cate Edwards: Before my mother’s diagnosis, I thought those affected by the disease were either survivors who beat cancer completely or women who lost their battles. I had no idea that there are people who go on to live for many years with advanced breast cancer. The early- and advanced-stage breast cancer communities are so different—I’ve found that the latter often feels isolated from the general “pink” movement, which focuses on prevention and early detection rather than how to live with the disease. I really want to ensure that women dealing with advanced breast cancer know that they aren’t alone; that’s a big part of what Count Us, Know Us, Join Us is about. The site has pooled existing resources such as advocacy hotlines, financial education materials, research news and peer-to-peer forums—all of which are specifically tailored to serve the advanced breast cancer community.
More: The transition from daughter to caregiver must have been a tough one. How did you deal with switching roles with your parent?
Cate: I wasn’t parenting her; she was still very much a protective mother to me throughout that process. I just provided her with physical care and emotional support—which wasn’t particularly new for us, as our relationship had always been one where we buoyed one another, to a large extent. I spent a lot of time focused on my mom; I wanted to be as selfless as possible. But we forget that when we’re helping a loved one through advanced breast cancer, it’s really important that we, as caregivers, reach out to others and get support for ourselves. I definitely didn’t ask for as much assistance as I should have. Count Us, Know Us, Join Us also helps on that front, offering support not only to women who have cancer but also to their family and friends. By visiting the site, people can receive information on the disease and guidance on what to expect when caring for their sick family member.
More: You always hear people say, “Don’t make someone else’s illness about you.” Did you feel as if you had to put aside your own emotions about your mother’s illness—make them invisible—in order to be strong for her?
Cate: Yes, I was guilty of hiding my feelings in the beginning. But I wasn’t fooling her! So we discussed how I was coping. She was a pillar of strength for me and I really relied on her. In a lot of ways, her ability to support me was her way of paying me back for what I was giving to her. It allowed her to be a parent in a time that she felt helpless.
More: What advice do you have for adult children who may feel guilty because they can’t always be with an ill parent in person? If someone can’t travel frequently or move her mother into her home, what are some ways to make up for the distance?
Cate: That was my exact situation. I lived in Washington, D.C. and my mom lived in Chapel Hill, NC, so I was physically apart from her most of the time. But you can be a really good caregiver from afar. I called my mother to check in on her on a regular basis. We even coordinated that we’d watch certain TV programs, so that we could call each other afterward and talk about them. Think of little things that allow you to feel connected when you’re not together. I also planned a lot of mother-daughter trips. In 2009, we went to Detroit for the NCAA Final Four. There was a lot of intense basketball watching, which both of us really liked, so we weren’t thinking about her disease. When she started to feel sicker, I took her to Lake Placid for a more relaxed outing—we went to dinner, watched the fall leaves change and got massages. You don’t always have to be aggressively attacking life. Being normal together and spending quality time are just as valuable as anything else. We didn’t know how much time we had left, so making every day count was important to both of us.
More: What’s the best way to give back to the advanced breast cancer community?
Cate: Start by signing up to be counted as a patient, caregiver, family member, friend, or supporter. [Editors’ note: The organization does not accept donations.] Simply acknowledging who you are and your connection to advanced breast cancer can help.