A breast cancer patient's go-to resources for starting and continuing the cancer talk with your kids
One of the truths I live with as a parent with cancer is that I just don't always know the best choices to make and sometimes, even when I do know that best choice, I still choose what's easiest in the moment. We all do it as parents. Cancer doesn't make me special in that respect.
Yet, because I live with metastatic breast cancer, every choice carries additional weight. My time with my kids, the nearly four years I've had since my stage 4 diagnosis, isn't something I take for granted. When I get angry at my teenage son for being late (again) to school or for playing computer games when he should be doing homework, it comes with the background noise buzzing around my brain that "now" is the time I have to help him become a responsible adult.
Within a week of my cancer diagnosis, but before I knew it had metastasized, my kids and I travelled to California to spend time with my parents and sisters. Only my husband and I knew about what was to come once we returned to Illinois. There are moments now when I still wonder if I did the right thing by waiting to tell them. I justified my choice to keep the information to myself using many perfectly reasonable arguments: I didn't want to ruin their vacation, I didn't want to ruin my vacation, I didn't want to have to talk to other adults about it, I just wanted to have one final fun time with my family without illness coloring everything.
Of course, for me, it did color everything. I was both a participant in the joy of playing with my kids and a spectator with a secret. That ride along the beach? Maybe it'd be the last time I'd see the Pacific ocean. That trip to Disneyland? Maybe I would never go there again. You get the idea. The trip was an extended private goodbye to a life I was leaving. But only for me.
In retrospect, I remain OK with the choice my husband and I made. We didn't know anything about what was to come, so our answers to any questions wouldn't have been satisfying to our kids.
But being a parent with cancer means you question even the choices you know are right. It was my job to explain that I have cancer and it was also my job to follow my kids' leads. Answer questions, reassure, watch for emotional overload. If cancer is a part of your life in any way and you love a child, there are resources out there and also remember to check for local resources through your cancer center:
Living Beyond Breast Cancer When I was first diagnosed and for several months afterward, I didn't know about LBBC and I wish I had. This organization provides insightful and useful information to women (and men) diagnosed with breast cancer at any stage. Parenting resources and links, to camps, other websites, and articles, are easy to find and often applicable to all cancers. LBBC has a program exclusive to those parents in the United States diagnosed with breast cancer who have young/teen children. Through their program Reading for Reassurance, parents answer a short questionnaire and LBBC provides two to four books at no cost to help parents in these necessary conversations. Reading for Reassurance is the brainchild of LBBC and educator and metastatic breast cancer patient Margaret Zuccotti, MSEd, who started a similar program at Fox Chase Cancer Center in Philadelphia. The appropriate age range for these books are young children through teens, with an additional title that is likely to address a parent's additional concerns.
Simms/Mann UCLA Center for Integrative Oncology Your own cancer center may, if you are fortunate, have programs specifically for parents with cancer and their children. If not, the internet provides parts of some of the best through articles and webcasts. My favorite, hands down, is this page, which does not pussy-foot around the difficult topics and gives practical, actionable and relatable guidance.
Cancer.Net This is the patient-information site from the American Society of Clinical Oncology (ASCO). The suggestions here are likely to give you something to think about before sharing your diagnosis with anyone. Their tips for talking with teens is particularly powerful because it includes steps that an anxious parent might not think of but could prove especially helpful, such as a rundown in behavioral changes that could mean a teenager is having a more difficult time than he or she is letting on. On the page for talking with younger children, the very first tip is to use the term "cancer", which can be hard to do for a parent but is so needed for the best and most helpful communication.
National Cancer Institute This US governmental site for patients cancer.gov provides excellent information for parents with teens. When Your Parent Has Cancer: A Guide for Teens is a pamphlet that you can read with your teens, but also allow them time to read and consider on their own. It provides factual information about cancer and addresses a teenager's possible feelings in a way that doesn't simplify them and encourages deeper thinking about how to address stress, worry and fear.