An Update on Herstories: Breast Cancer Narratives and CounterNarratives

So I meant to write about attending the Herstories: Breast Cancer Narratives and CounterNarratives symposium right after I got back on March 2 because it was such a wonderful event and it was eye opening for me in many ways.

The first thing I have to say is that I didn't realize how much I wanted to be with other women who had experienced breast cancer.  When I was first diagnosed and then going through chemotherapy, many people offered to put me in touch with women who had had breast cancer and friends and relatives (especially those who had gone through their own bouts of cancer) had talked about how important community is and the friends you develop in the chemo chair.

But I didn't want that.  Not then.

When I was in the thick of things, when I was going through chemo and then preparing for surgery and then recovering from surgery, I didn't want to know other women who had gone through breast cancer or who were going through similar things.  I know that might sound perverse--it felt perverse at the time.  I tried going to yoga at Cornucopia Place and got totally freaked out the one time I went because it was filled with these women who had gone through cancer (mostly breast cancer) and they were laughing and joking and talking about their experiences (and most were post-chemo/surgery -- I think one woman was re-starting chemo but we seemed to be the only 2 women in active treatment) and it really freaked me out.  I'm not exactly sure why--maybe because I didn't identify as someone who was NED (no evidence of disease) as many of these women did.  Maybe because I was in the thick of things.  Maybe because I was angry.

So fast forward to March 1 & 2.  I'm at Wake Forest University listening to some pretty incredible people talk about their experiences with breast cancer--either from the perspective of being doctors/caregivers or family members of someone with breast cancer or with being women who had the disease.  And it was over lunch as I was sitting at a table with two women, both academics, both survivors, that I realized how glad I was to be sitting with them and talking with them about our shared experiences.  We exchanged stories about the weird and stupid and odd things that got said to us when we were diagnosed with breast cancer (one woman shared that a friend told her that she didn't seem like the kind of person who got breast cancer, to which she said, "What's the profile of a breast cancer patient?"--we both totally cracked up at her story--and maybe it's not THAT funny, but at the time it seemed hysterically funny.

And it reminded me about the easy camaraderie of the women in the yoga group.  I asked one of my tablemates about whether she ever stopped thinking about recurrence now that she was at the 5 year mark (she just had her 5 year check up last month) and she said that it does lessen--that especially that 5 year mark seems significant in terms of turning a mental corner.  It was comforting talking with her and with my other tablemate who had finished treatment and was embarking on breast reconstruction.  Our experiences were different yet similar--and perhaps one similarity was the desire that all 3 of us had to try to narrate our stories--to try to talk about and write about what we had gone through.

That was a large point, perhaps the main point, about this conference--trying to listen to the stories of women going through a breast cancer diagnosis.  Trying to hear what women with cancer have to say about the disease and their treatment and their relationships with family and friends, but also to hear about the ways that the disease isn't the only thing that is defining them.  People talked about the importance of humor.  About empowering women in their decisions and in telling their stories.  People talked about resisting the corporatization of breast cancer in its pink ribbon incarnation.  People reminded health care professionals (oncologists, surgeons, nurses, radiologists) about the importance of listening, really listening, to what women have to say.  And one woman gave this amazing 20 minute power point presentation about the history of breast cancer from the time of the ancients to our present day culture.

I am not doing justice to how much I learned and took away from this experience.  I not only got to listen and learn, I got to meet and have 1:1 conversations with these panelists (because it was a fairly small conference, about 50-80 on average attended each session).  You can click here to see the full conference schedule and I'd definitely recommend trying to google folks whose talks seem interesting.  Just to highlight a few, Amy Boesky (Boston College) has a memoir about her family and being positive for the BRCA mutation (she was also recently on NPR where she outed herself as one of the writers of the Sweet Valley High series!).  I met Ana Iltis who is editing a journal, Narrative Inquiry in Bioethics, that strives to tell the stories of people who are typically not enfranchised to have their voices heard, and she told this remarkable (and anger producing) story about her husband's aunt who was not treated with respect by the medical establishment.  I talked with Kathryn Montgomery, a leading researcher in the field of medical humanities, who shared stories about her daughter's breast cancer (and its recurrence), and I was inspired by Hephzibah Roskelly, a fellow English professor down the road at UNC Greensboro who has talked theorized about her experiences with breast cancer in a way that is so smart and accessible and powerful.

All of which left me, at the end of this 2 day event, feeling like I might be ready to try to construct my own narrative about breast cancer.