There’s a big pink party and I’m not invited. For so long, I just sat and pouted. Then I felt angry, like Maleficent being left out of Sleeping Beauty’s party.
At first I thought the celebration was for me. When my breast cancer was stage III, I walked a race and felt the love radiating from a crowd of pink tutus, t-shirts. and feather boas. Then my breast cancer became metastatic, also known as terminal, incurable, advanced, or stage IV. The pink world no longer made sense.
As a community, breast cancer survivors are struggling to decide if we should banish the pink or reclaim it. Created as a symbol of hope, it continues to build community for millions, including many with metastatic breast cancer. For me, pink is complicated. The narrative of cancer treatment, then cure, then party seems dangerous. It excludes the very people who are going to die from this disease. It misguides others to believe breast cancer is already cured, making them less likely to understand friends with metastatic breast cancer. Plus, if you think it’s cured, you aren’t likely to advocate for research to truly end breast cancer.
This year, I’m ignoring social graces, and crashing the party. I published a book, Camp Chemo: Postcards Home from Metastatic Breast Cancer to promote understanding. I insisted our local breast cancer conference include a session on living with metastasis. I presented at the conference alongside a palliative care doctor and a psychologist. After the session, women in the room made connections with each other, telling their stories. Many said they’ve never really felt welcome at breast cancer events, but they found community at this conference. One conference, one book, one story at a time our voices are being heard.
For 30 percent of those with breast cancer, eventually, the pink fades to black. Even if we have to crash the big pink party, we’re communicating that we deserve a place at the table. In more and more cases, we are being embraced for our wisdom. And that helps everyone at the table.
It’s important to remember individuals with conditions that don’t fit neatly into their specific disease box. Often, those on the fringes teach important lessons that ultimately help everyone.
Camille Scheel was 38 in 2007 when she was diagnosed with stage III breast cancer. It metastasized to her bones in 2012. She is author of Camp Chemo: Postcards Home from Metastatic Breast Cancer, available at book sellers and CampChemo.com.