“Cure Is Not Enough”
September is Childhood Cancer Awareness Month, and the message that is circling the globe is #GoGold in every possible way from lapel pins and t-shirts to state houses and monuments being lit up gold. It’s a month of gold ribbons with hashtags pointing to our children, our adolescents, and our young adults.
Please understand that I am not criticizing such gestures. In fact, I’m donning my childhood cancer gear right alongside everyone else in my community; however, I believe that awareness-raising specific to childhood cancer is part, but not the whole, of what this month, every month, should be focused on.
I believe the majority of our culture is very aware that children, adolescents, and young adults get cancer, and while I support the continued pursuit of innovative, less toxic curative regimens, I am resolute in my conviction that those “living the cure” are worthy of awareness-raising advocacy efforts, and action on their behalf as well.
Those “living the cure”, myself included, seem to get lost in the conversation during the month of September as we have returned to the appearance of wellness; our struggles with the late effects of curative cancer treatment can put us in the “but you don’t look sick” category. If you don’t look sick, then you must not be sick.
Even worse is the criticism or judgement that we are ungrateful for our cures should we dare to raise a treatment-related health concern. Then there is also the phenomenon of survivor’s guilt which often renders us not just hesitant, but altogether reluctant to bring forth our concerns. After all, we survived when so many do not.
It’s as if we, the childhood cancer community, have a blind spot or a deaf ear when it comes to the lived experience of survivors. Our curative regimens have created health risks and secondary life threatening circumstances, yet we are reluctant to accept the responsibility of having done so. We talk a lot about survivorship and the need for lifelong follow up, yet we fail to act in an appropriate and effective manner.
Future healthcare providers are not educated or equipped to provide appropriate care to the survivorship community; current healthcare providers do not have access to continuing education addressing the potential for late effects and appropriate screening guidelines; and perhaps most importantly, survivors are ill equipped to take charge of their health and wellness. Rather than serving as our greatest advocates, we pose perhaps the greatest threat to our personal health and well being.
Consider with me:
Fact: We are not curing every child, every adolescent, every young adult; however, we are curing many.
Fact: Cure necessarily creates a responsibility with regard to survivorship care and research.
Fact: We need innovative, less toxic, yet equally effective therapies that target cancer cells while leaving normal cells, tissues, and vital organs unscathed.
Fact: The aforementioned therapies can’t be researched and developed on a budget of less than 4% of the NCI’s total budget coupled with a lack of commitment on the part of big pharma.
Fact: The number of survivors will continue to grow.
Fact: Greater than 95% of adult survivors of childhood cancer will have at least one chronic health condition by the time they are 45 years of age directly caused by their cancer treatment.
Fact: Less than 25% of survivors can give an accurate, detailed treatment history which makes treatment-related risks to health and well being difficult at best.
Opportunities abound within the realm of childhood cancer survivorship:
- Educating and equipping survivors to take ownership of their cancer history, its treatment, and the future risks it poses;
- Providing for survivorship follow up within the context of a well framework being mindful that age-related risk and screening apply all the more to survivors;
- Addressing the emotional toxicity alongside the physical toxicity.
Almost 40 years of survivorship which include the amputation of my heart have led me to the conclusion that cure is not enough. Thus as long as there is life and breath within me, I will continue to take ownership of my history, shoulder my risks, and support the efforts of my fellow travelers to do the same.
Stephanie Zimmerman: Wife. Mom. Daughter. Sister. Cousin. Aunt. Friend. Confidante. Encourager. Servant Leader. Nurse. Childhood Cancer Survivor. Heart Transplant Recipient. Advocate. Change Agent. Student of People. Tiny but oh-so Fierce.