A dear friend and fellow survivor who died several years ago of heart failure caused by mantle radiation and doxorubicin had a blog entitled ‘Surviving Survivorship.’ She made me promise to use that term, phrase, idea, reality in a way that would benefit other adult survivors of childhood and AYA cancers.
It’s taken me this long to decide just how to do that. They’re SO many childhood cancer [and] AYA FaceBook groups as well as disease specific groups that I didn’t know what would make this group stand, what added value it would provide.
As a member of a few of these groups and having left a few, too, I have noticed that there is a general lack of knowledge surrounding survivorship literature, late effects, and followup recommendations.
Therefore, I have decided to start a closed group on FaceBook. This group will be evidence-based or consensus driven, at the very least, such that survivors can educate and equip themselves to advocate for their unique healthcare needs.
Having been a pediatric oncology nurse practitioner in survivorship, I believe my professional expertise will inform how I moderate this group just as my personal lived experience as an adult survivor living with late effects informed my clinical practice, the provision of survivorship care to children, teenagers, and young adults.
While I will not dispense medical advice, I will share my lived experience. I can also help on the advocacy front by providing access to the latest scientific findings.
Sadly, survivorship and late effects research are under-funded, under-researched at a time when our numbers are increasing dramatically. We are living this reality and I believe that to cure without providing for survivorship care is remiss, if not negligent, on the part of our providers.
Survivorship is a matter of great import.
Please consider requesting membership; I’d love to have you join.
I hope to meet you over at Surviving Survivorship in the not too distant future!