Cancer Advocacy: Lessons to Remember

Becoming a cancer advocate wasn’t even in the realm of my reality, let alone becoming one at such a young age. It is just something that happened, someone that I became. I suppose that the choices I made led me to where I am today, and to carry that title. How it all happened though, is largely a blur. Finding purpose in the face of such devastation gave me a reason to go on.

It is a role that I fell into in the fall of 2014 after my sister’s diagnoses of stage 4 Hodgkin lymphoma. The fact that I was her primary caregiver, that her case was so complex and that she was not the best advocate for her own needs led me to use my voice and speak up.

It was a shocking world to immerse myself in. To learn all of the statistics and delve into the endless data gave me knowledge that haunted me in her darkest hours. She has defied every odd, and while that means she is here, it also means that she suffered more than most during the course of her cancer journey. I have found that educating myself has made me a better advocate for her and for others.

While I watched her care team work so very diligently to save her life, I fell in love with the field of nursing. And while I worked towards that goal, I have learned that my time is best spent volunteering. Working with patients and families who have been affected by cancer has given me more than I think I can ever give back to them.

Cancer leaves so many voiceless for many reasons. To me, that is when advocacy is most crucial — so that those afflicted can focus all of their energy on an incredible fight. To be their voices and help them get the best of everything that they not only so desperately need, but deserve.

When I took the role on as advocate, I, like most, had no idea what that title truly entailed. As I now advocate for other patients, I am constantly reminded of the limits that persist in a field that seems to be ever-changing. I am learning that no matter how hard you try, or how many hours you pour into something or someone, nothing is guaranteed. It is an indescribably hard lesson to learn, but it is a very important one.

I think another thing that advocacy has taught me is the critical need for perspective in my life. Cancer is something that happens in far too many lives — a fact of the world that we live in. It does not, however, have to define every moment in one’s life. It is a pervasive illness that takes so very much from everyone affected by it. There are, however, so many things that cancer not steal away, such as we chose to react to the disease in our lives.

To seek out what means most to you and find the simple joys of life are what is most important. It is the memories that you will make despite the devastating diagnosis that you or your loved one is facing. It is normalcy in the face of one of the most abnormal situations that one can find themselves in.

Being an advocate can be draining. Unknowingly, it became a far larger part of my identity than I ever knew possible. That is not to say I regret my choices, it is to say I am working on rediscovering all the other parts of myself, too. Before you take on the role of advocate, just remember, it is a piece of who you are it is not all that you are.