Mothers with metastatic breast cancer gathered with their husbands and children during a getaway weekend focused on how cancer touches the whole family.
The women, two in headscarves and one wearing a wig, confided in one another. The husbands, long used to keeping their feelings to themselves, opened up. The kids, relieved to be in the company of other children whose mothers have MBC, played happily. The guiding principle of a getaway weekend in Freiburg, Germany in November 2015 was that when mothers get MBC, it impacts their families too. So three families - three mothers, two husbands, and six kids ranging from age two to 18 - came together to share the unique experience of living with the effects of MBC with some of the only other people in the world who truly understand what that means. A psychologist specialized in helping families live with cancer diagnoses held individual and group sessions throughout the weekend, including one in which an 18 year-old spoke for the first time in five years about his mother’s disease. A patient advocate, who herself was diagnosed with breast cancer years ago, led an emotional workshop on the importance of listening and communicating well. Over the course of an intense two and a half days, there were a lot of tears – and a lot of laughs.
"It was perfect. Just perfect," says Eva Schumacher-Wulf, organizer of the event and editor of a German-language breast- and ovarian-cancer magazine called Mamma Mia!. Ms. Schumacher-Wulf founded the magazine, the first in Europe to focus specifically on the topic of breast cancer, in 2006, after her own breast-cancer diagnosis. Now, Mamma Mia! has 7,000 subscribers around the world and a circulation of 20,000, as well as an active Facebook community of more than 10,000. "Women and families of women with MBC have very specific needs that we wanted to address with this weekend," says Ms. Schumacher-Wulf. "They know that the disease can’t be healed and that their time together is limited. The popular discourse about early-stage breast cancer, including the rhetoric about ‘beating the disease,’ just doesn’t apply to them." Mamma Mia! put out a special issue dedicated to MBC issues in 2014. An update, including information about new therapies, will be released by the end of 2016.
When Ms. Schumacher-Wulf first fielded the idea of the weekend on the magazine’s Facebook page, some 12 families said they wanted to take part. Ms. Schumacher-Wulf whittled the group down to five, and the costs for the weekend were covered by Pfizer. By the time the weekend arrived, two of the women weren’t feeling well enough to attend. "That’s something you have to take into account with MBC," says Ms. Schumacher-Wulf. A professional photographer took family portraits of the three families who were there. And, fittingly for an event whose theme was "Giving Breast Cancer Patients a Voice," each group of mothers, fathers and children crafted a series of messages to share about their particular situation. The kids wanted other children of mothers with MBC to know, "you aren’t alone with this problem." The husbands cautioned fellow partners: "Don’t overwhelm her, but don’t handle her with kid gloves, either." And the women themselves sent the following message to the world: "Every single day the disease doesn’t advance and we remain pain-free is important for us and our families."