September dawns today as the nation, the world dons all things gold in honor of Childhood Cancer Awareness Month, a month in which awareness-raising activities abound.
Historically, the need for a cure is front [and] center with little mention of the living out of the cure in the survivorship years.
As an adult survivor of childhood cancer and a pediatric oncology nurse practitioner, I get it; I want a cure for every child, teen, and young adult too.
That being said, we have a survivorship population with real [and] present needs that stem from the toxic effects, untoward effects of their curative therapies; needs that are under-funded, under-researched, [and] under-addressed.
We have a survivorship population that is under-informed, if not misinformed, regarding their treatment history [and] the future risks posed to their health and wellbeing.
We have a survivorship population that is lost to appropriate follow up for a multitude of reasons from ill-equipped healthcare providers and lack of knowledge to fear and post-traumatic stress leading to avoidance and denial.
We have a survivorship population that may be cured, but may or may not have healed.
We have an obligation to raise awareness specific to their lived experience [and] to advocate just as vigorously on their behalf as we do on behalf of those diagnosed each [and] every day.
What does September Mean to Me?
September reminds me that cure is not enough; [it] reminds me that to cure without a plan for lifelong follow up is negligent at best.
September reminds me that today’s newly diagnosed patients are tomorrow’s survivors [and] greater than 95% of them will have at least 1, if not 3, chronic conditions resulting directly from their curative regimens by the time they turn 40.
September reminds me that the more things change, the more they stay the same.
September reminds me that awareness is empty if it does not translate into action; action that exacts real change in the life of the survivor.
September reminds me of 4 individuals who reached out to me over the last year for more information about chemotherapy-related heart failure and transplantation who have since died because their heart failure was not detected early enough for medical, surgical intervention.
September reminds me that I am uniquely positioned [and] equipped to shine a spotlight on survivorship in a meaningful way not for one month, but every single day.
This September marks a milestone and a new beginning of sorts for me as I celebrate 40 years of survivorship.
This September marks the end of an 8 month sabbatical of sorts as I stepped back to observe, to study my fellow travelers those who are searching, yet not finding, the answers, the resources they need to optimize their health and wellbeing.
Finally, this September brings a focus on healing [mind, body, heart-soul], healing of the gaping wounds left behind by some of the most traumatic events a child, teen, young adult, and parent[s] can face from diagnosis through to the living our of the cure.
I am [and] will remain a gladiator in the arena daring greatly on behalf of those children, teens, and young adults who captured my heart decades ago as I answered the call on my life to speak to their experience [and] on their behalf.
Join me this September as I speak to the great import of appropriate treatment-related and age-related screenings and the how-to of optimizing one’s health and wellbeing throughout the survivorship years.
Be forewarned; you might just find yourself going all in to go all out: this month, every month.
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