Survivorship and Advocacy: A Time of Psychological Redefinition

M. Suzanne Hicks, MSW

Suzanne Hicks, self portrait.

Do you remember the day of breast cancer diagnosis? I do….the shock, the fear, the unknown. At first the tasks of survivorship appeared physical, focused on the body. But once these choices were in place, I was swept into post-treatment, a psychologically challenging time. As a psychotherapist, I offer you one perspective on moving from cancer to advocacy, with a nod to the complexity of the process. Personally, it took a one-on-one introduction to NBCC, through my daughter Giselle, to pull me into both advocacy and a further step toward my own continued psychological growth.

The First Role of Someone Diagnosed with Breast Cancer Is to Survive

Both during and after whatever treatment is chosen, we deal with very basic psychological tasks. One major task is trust. And just as the infant learns trust from predictable, kind, nurturing parents, we have to again re-form our trust networks. We now include medical facilities and personnel, family and friends, colleagues, religious affiliations, neighbors, peer groups who have been supportive and understanding. Sometimes the psychological work includes reworking a relationship that no longer feels trustworthy at this point, or letting it go. Grief becomes a partner for each of us. It’s during this stage that survivors often group into local self-help organizations, as they need to be with others who understand and are trustworthy. I found several excellent local groups, in particular CRAAB! But at that stage in my own journey, I was most comfortable leaning into the support primarily from my friends and family.

The Second Role Is to Redefine Life

After diagnosis and treatment for breast cancer our bodies are not the same—we are not the same. This is a critical stage in the psychological recovery and growth of the breast cancer advocate. There is no timeline for this stage; some enter immediately, during or after first treatment, but many take a year or two to move past survival into “redefinition.” It took me longer, as I continued in my practice through treatment and for nearly two years following. Although I still treasure being a part of the Albany Medical College Department of Psychiatry, and value my continued work with my peer supervision group, only when I closed the practice could I gather momentum to move in new directions. This was a difficult decision, but right for me.

Moving past any shame or doubt that accompany cancer, beginning to develop pride and determination, beginning to make active choices in all aspects of life, the “redefine” has an unparalleled opportunity to re-examine values and roles in life. Work may no longer fit needs, or need to be restructured. Relationships are re-examined. This is the stage at which the survivor begins to look outside of herself/himself and can choose to initiate change on a larger scale. Some advocates never move past the immediate redefinition from patient to survivor but many, certainly those reading this blog, shift into advocacy. I closed my practice and had new business cards made, highlighting growing aspects of my own identity—artist and advocate! NBCC has been a leading organization to gather these new advocates and train them to speak the languages they need to move into the third role.

Psychologically, the Third Role Is to Act on Redefinition and Continue to Change as the Opportunities Arise

With the scientific education, political focus, and an action support net cast around the world, NBCC enables cancer survivors to act. Educating ourselves, working for the health of others, gathering smaller organizations in coalition, and always aware of that small step into metastasis, we network with others who act.

It was at this point that I began to accept tasks that would have previously been unimaginable. Currently, among other responsibilities, I am serving a second term on the New York State Health Research Science Board; I am a member of the Scientific Advisory Committee of the Love/Avon Army of Women; I have been a consumer reviewer for the DOD Breast Cancer Research Program; and I serve as a reviewer of breast cancer-related medical journalism for Gary Schwitzer’s “healthnewsreview.org.” Combining life as a painter, an advocate, friend and family member, I have experienced a richness that at times leaves me breathless. It balances the fear and anxiety that will always remain.

It takes courage to continue growing as an advocate, to try the new, to meet or develop a needed area of advocacy, to walk through that open door or pound on the closed. Those of us who have survived breast cancer will only continue to grow psychologically if we both allow intimacy with other survivors (all those hugs count!) and find ways to protect those who have not suffered this illness. We can step into a life of a larger creativity and integrity, and impact the social, scientific, and political environment that holds us all. We are, after all, our sisters’ and brothers’ keepers.

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