What is survivorship?
There is a huge amount of debate about how to define the term “survivorship”, who is a “survivor” of childhood cancer and if this is even an appropriate term.
Ellen Stovall is President and CEO of the National Coalition for Cancer Survivorship (NCCS). The NCCS is the oldest survivor-led advocacy organization in the US. Ellen Stovall, with other NCCS founders, was the first to define the terms “survivor” and “survivorship” in relation to cancer nearly 20 years ago.
Their widely accepted recommendation was that an individual is considered a cancer survivor from the time of cancer diagnosis, through the balance of his or her life.
NCCS later expanded the definition of survivor further to include family, friends and even voluntary caregivers affected by the diagnosis in any way. Childhood cancer and its treatment can change the lives of former patients for ever, but can also profoundly and permanently affect their parents and families.
The term “survivor” has been rejected by some former cancer patients and they prefer to use an alternative term, “thriver“ which emphasizes living as well as possible, despite any limitations or disability.
Suleika Jaquad has a blog at the NYT. She is in her early 20s and had a bone marrow transplant for leukemia. She writes from a deeply personal perspective about the issues around survivorship.