Creating our own sanctuary: a story from ECANA women

Margie Wilson

Jacqueline Mbayo

Martha Jean Williams

Adrienne Moore

2020 brought about an unexpected shift in social norms, frightening vulnerability, and the reevaluation of societal dependencies for the entire world. For cancer survivors still navigating how to live through and beyond their treatment experiences, it was also a time of intense social isolation.

Endometrial Cancer Action Network for African-Americans (ECANA) laid the foundation for renewed hope, therapeutic relationships, and mindful movements for Black endometrial cancer patients and survivors in the form of “Survivors’ Sanctuary”. ECANA’s Jacqueline shares how her commitment to the organization began with her attendance at a Survivors’ Sanctuary meeting.

“Where are all the Black women, like me, diagnosed with endometrial cancer,” Jacqueline wondered? She knew they had to be out there somewhere.

Jacqueline learned that a group of Black endometrial cancer survivors were meeting at the ECANA Survivors’ Sanctuary. It was introduced to her as a safe, virtual space for Black women.  Jacqueline felt right at home when she logged on. The women in the group talked about different topics, like how their Christian faith pulled them up through the tough times of having cancer, how they fell victim to misdiagnoses for months before diagnosis, and how frustrating it was to find a physician they could trust. The conversations were rich and resonating.

“Peace,” Jacqueline thought as she inhaled and exhaled as during the breathing exercise.  She felt refreshed, safe, cared for, and supported. Jacqueline had finally found the sanctuary she knew she needed!

An AAFA certified fitness instructor for more than 30 years, Margie found herself in an odd dichotomy for someone who had been healthy all her life.  She was surprised in 2016 with a diagnosis of Stage 1B endometrial cancer. Much like Jacqueline, Margie desired to find a community that shares her concerns about the need for increased awareness around endometrial cancer in Black women. She joined the ECANA Steering Committee after finishing treatment. Margie decided to exercise her teaching abilities differently as the pandemic highlighted the need for human connection and mobility, especially while navigating cancer survivorship. She began uploading her yoga-inspired moves to YouTube on a channel affectionately called “Grandma Fitness.” Her colleagues on the ECANA Steering Committee recognized it was something they wanted to offer to Black endometrial cancer survivors.

The Survivors’ Sanctuary held its first virtual chair yoga and conversations Zoom meeting in May 2020 proceeding as a one-hour meeting every other Friday, attended by Black endometrial cancer survivors across the country. Each of these women is at a different stage in their cancer survivorship journey. Each meeting is unlike the last, at times filled with laughter and story-telling and other times tear-filled prayers, as well as movement and stretching every time. The women come for connection and conversation, and they leave as a part of a community of survivors who have become an indelible part of Margie’s own survivorship story. Margie’s motto is, “Where there is one, there is movement, there is lots of stretching, there is a connection, and there is Sanctuary.”

ecanawomen.org for Black woman diagnosed with endometrial cancer.

Margie Wilson is a 5-year Endometrial Cancer Survivor, a Patient Partner, Advocate, Advisor, and Director of Fundraising for ECANA. Margie has 5 grand kids who keep me full of life and she loves to sew, read, attend live theater instruct exercise classes with Endometrial Cancer Survivors and hang out with friends. 

Jacqueline Mbayo is the Director of Research Partnerships at the Endometrial Cancer Action Network for African-Americans (ECANA). She has a background in Health Information Management, and has worked in Clinical Research for over ten years on several Phase III clinical trials.  After her own diagnosis in 2017, Jacqueline has a life mission to educate, empower, and build community with Black women diagnosed with endometrial cancer, and promote meaningful patient-centered research, to improve health outcomes. 

Martha Jean Williams is a Patient Adviser, ECANA Ambassador and Board Member. Martha Jean was diagnosed with endometrial cancer in 2012 athe the age of 57.  She joined the advocacy efforts of ECANA in 2018 having a breadth of experience as a patient partner in community research.  She enjoys cooking, writing, listening to music and dancing.  Since receiving her cancer diagnosis, Martha Jean has made it her mission to promote and prioritize self-care.

Adrienne is a Patient Survivor & Advocate, Director of Peer Supporters for SISTER Study
Patient Advisor and Director of Programs for ECANA. She is also a Respiratory Therapist by profession and has spent the bulk of her 22-year career in field education of patients, caregivers and hospitals alike. She enjoys spending her time writing and serving her community where there is a need. She comes to ECANA through her research of advocacy opportunities in black women’s health after her own diagnosis of Endometrial Cancer in 2016.