One of the biggest challenges we face as AYA cancer patients and survivors is getting our voice heard. If we’re treated in pediatric settings, communication is often directed to our parents or guardians, so we often lack the opportunity to speak out. If we’re treated in adult settings, we aren’t always prepared with the communication and negotiation skills to be able to speak out, even though we may be given the space to do so. We’re in this strange no-man’s-land.
Tag Archives: Clarissa Schilstra
One day last week, I came home from work and spent the evening relaxing until my fiancé came home (he’s a chef so he came home about 6 hours after me)…I was just sitting on the couch watching something on Netflix when he walked in the door with a totally annoyed, borderline angry look on his face. I assumed maybe he had had a bad day at work, but instead he proceeded to scold me for leaving my keys in the lock of the front door. “Luckily we live in a safe building but you can’t do that Clarissa, you have to pay more attention!” My honest response: “I literally had no idea I had done it and had 100% remembered bringing them in with me, sorry!”
A cancer diagnosis, the treatment process, and the transition from cancer patient to cancer survivor brings a host of challenging changes with which AYAs need to deal. In the midst of these challenging changes, AYAs are trying to grow up. This combination of changes and transitions makes it critical for parents and guardians to be aware of how important communication is, and how necessary it is to consider the needs of AYAs, as well as what will be most beneficial to AYAs’ development, when communicating.
Over the past few months, I have been working as a health coach in a program for Adolescent and Young Adults (AYAs) with chronic illness, including AYA cancer patients and survivors. My job has been to help them work through limitations imposed by their illnesses, as they try to reach important goals they have set out for themselves. After a few weeks of coaching, I and the other coaches I work with, noticed a trend: every single one of the patients being coached through the program felt uncertain or confused about how to communicate with their health care providers (HCPs). This made them frustrated or nervous on more than one occasion, and those communication struggles often left them feeling like they did not have full control over their care.
As World Cancer Day 2017 approaches, I am grateful to be able to continue to call myself a survivor. So much progress has been made that makes it possible for me to be the healthy, happy young adult I am now. However, World Cancer Day also reminds me how uneven that progress has been. Scientific breakthroughs have led to better and better cancer treatments that gave back life to childhood, teenage, and young adult cancer survivors, like myself. Yet, that progress is hampered by the fact that every child, teenager and young adult successfully brought through treatment must also successfully transition back to normal life after treatment ends. I feel fortunate to have been provided many different forms of support from many different sources that have helped me with my own transitions, but none of that support was standard care. I personally know so many other survivors who are my age but struggling to build a life for themselves due to challenges they face related to the impact of their treatment. The transition back to normal life, no matter the age group, can be incredibly difficult without proper support and guidance.
According to the National Cancer Institute, about 69,212 adolescents and young adults (AYAs) were diagnosed with cancer in 2011 – this is 6 times the number of cases diagnosed in kids who are 0-14 years old (National Cancer Institute, 2014). This makes it kind of obvious that it’s important to have cancer centers dedicated to providing quality care that meets the range of specific needs of AYA patients.