Todays, post comes from Board Member, Cathy Ormerod. She dives into the word, survivorship and how that word is considered within the MBC community. Read on. We would love to hear your thoughts too. So please leave your comment.
You and I are sitting on the Project Life’s front porch. We are enjoying the beauty of the space that has been carefully created, artistically created. It is a place for reflection, learning, conversation and expression. I ask you, “What does the word ‘survivorship mean to you?’
In my years of working with and becoming close to people living with metastatic breast cancer, the word survivorship causes a range of reactions. From a shrug, to an embrace, to sadness, to anger and many more emotions in between.
In general, I find the shrug comes from those who find the word and concept of survivorship to be irrelevant to someone whose treatment for cancer is ongoing, and the impact of those treatments physically, emotionally and socially challenging. Often times grueling.
The embrace of ‘survivorship’ comes from those who welcome the adoption of a care plan for their metastatic experience, akin to the ideal image of the early stage survivorship care plan. A plan that takes the physical, emotional, sexual and spiritual experiences of living with MBC into account and attends to those needs immediately and as they change over time.
Sadness and grief are associated with the word survivorship for people living with MBC. We know all too well that lives are lost to this disease every day. People we love and cherish do not survive and the word is grating.
Anger comes when the word is used to exclude people with Mets from hospital survivorship services or other programs. I’ve heard many, too many stories of people with Mets being excluded from care plans, from even palliative care because of hospital and cancer centers’ misunderstandings of the MBC experience and misapplication of knowledge.
At the same time, we also see MBC exceptional responders and people with specific subtypes that have targeted treatments that make it possible to live many years; some even decades.
I will borrow a phrase from my friend Katherine O’Brien, the brilliant writer, thinker, who lived with Mets for 11 years before passing away from the disease earlier this year.
‘This is a long-way around the barn’ to say that the word Survivorship and survivor feels to me, like an ill fitting hand-me-down from the early stage community. It has no specific meaning or shared understanding in the metastatic community.
So as we sit on Lesley’s porch, let me ask you, are there elements within the word survivorship or the concept of survivorship care planning that are important to you? What are they? And would it be worthwhile for the metastatic community to discuss those elements? Is there a name that captures that meaning?
I look forward to hearing your thoughts.
VP Executive Vice President, Strategy & Mission
Living Beyond Breast Cancer