As the end of September quickly approaches, I find myself wondering if there were a survivorship awareness AND action ribbon, what color would it be?!
I’ve said it before, and I’ll say it again: the greatest threat to our health and wellbeing is our lack of knowledge regarding our risk for potential late [side] effects of the treatment we received as children, teens, or young adults.
It seems that these days everyone looks for someone else to blame: medical education, healthcare providers, and big pharma, for example. I would submit to you that we, as survivors, are complicit in this ongoing debacle, and it is time for us to say enough, to step up, and to educate ourselves.
Request a treatment summary. If your treatment center cannot provide one to you, then give me a call as treatment regimens can be extrapolated from the standard of care from the years you were treated well enough to figure out your future risk for late effects.
Gather information on the chemotherapeutic agents you received, specifically the potential long term effects which are readily available on big pharma websites.
Consult the Children’s Oncology Group’s Survivorship Guidelines website which contains recommendations for long term surveillance for late effects based upon body systems.
Print the applicable sections, and make an appointment with your primary care provider to discuss a formal surveillance road map, then use it to navigate your survivorship years.
Fellow survivors, this is your responsibility and you will be all the better for taking ownership of it given a healthcare system that focuses largely on cure at the expense of the survivor population.
It is time that we, collectively, step up and communicate that we are more than the data we provided as participants in clinical trials. Indeed, we are more than guinea pigs!
Survivorship matters; survivors matter; we matter!
So, what color would our ribbon be? I would say it would be clear as the health issues we face are seemingly invisible, undervalued, and rarely discussed across disciplines such that our lives, our health, our wellness are impacted for the positive.
We’ve demonstrated that we can do hard things which includes the hard things of survivorship. Am I right?!
Cure is not enough: this day, any day…