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.
However, I believe there are ways to change that and make sure our voices are heard.
1. Check your perspective.
When I was diagnosed with a relapse of leukemia at 13 years old, I didn’t really know how to voice my thoughts or needs. In school, I had always been the shy student in the classroom, never raising my hand to volunteer to answer questions. I was the same way throughout my treatment. Then, the added challenge was that I also perceived the doctors as authority figures not to be questioned. I thought they knew what was best for me and that I should just trust them. But, I was lucky that my mom was super involved in my treatment because she was able to step in when it became clear, on several different occasions, that the doctors did not, in fact, know what I needed or what would be best for me. I still think back on those instances and wish I had realized that I, and not my doctors, am the authority figure in the management of my care. Given that, my biggest piece of advice is to always keep in mind that your voice is important, no matter what your age is. You know better than anyone what you need and what you want. Your voice can – and should – be heard.
You may not realize it, but your voice has the potential to make a difference for both yourself and other AYAs at the same time. By advocating for yourself and voicing what you need and want out of your care, you may, in fact, end up advocating for other AYAs dealing with a similar challenge. Maybe something you tell your doctor or nurse will teach them something or give them an idea to make a situation better for another AYA patient.
The same applies for other members of your healthcare team. Maybe a need or opinion you voice to your social worker or child life specialist will help them better meet the needs or include the opinions of another AYA patient. The AYA cancer movement is still very young and you have the opportunity to change the course it takes for the better.
2. Get involved.
Fortunately, there are many new ways for AYAs to get involved in making change and getting their voices heard.
One great way to make change in the hospital where you are treated is to join a patient advisory council. If your hospital doesn’t offer one for AYAs, talk to your oncologist, social worker, or child life specialist about whether it would be possible to start one. I have taken part in a patient advisory council in the past and I found it incredibly rewarding because I was able to share ideas for ways the hospital could directly improve the care given to its AYA cancer patients. I also learned so much from the other council members, whose ideas inspired me to involve myself in other advocacy activities.
You can also find a local or national cancer organization that is on a mission that aligns with what you want changed and the ideas that you would like to voice. Contact them to see how you can take part in what they are doing. Maybe you can volunteer with them, or share your experiences to help them in developing resources for AYAs.
3. Get out there.
Take part in support groups where you can share your thoughts with others going through similar experiences. Go to camps or on AYA cancer adventure trips (like First Descents). Maybe this will lead you to find new ways to get your voice heard or even to use your voice to fill a need. For example, I tried to voice to my healthcare team that I wanted to take part in a support group for teens – but not the regular “go around the circle and tell your story/what you are dealing with” kind. I just wanted to do normal activities with other people my age who were also going through cancer treatment. At the time, there wasn’t any group like that at my hospital.
So, after attending a summer camp for kids and teens who have or have had cancer, I joined together with some other teenage cancer survivors who wanted the same thing. We teamed up with a local cancer organization, who was willing to hear our voices, to start our own support group. The group was held once a month and we decorated gingerbread houses, watched movies, played board games, or did arts and crafts. There was no structure – we just wanted to have our safe space where we could hang out and feel like normal teens while still talking about our cancer experiences.
4. Go online.
These days, advocacy and sharing your voice doesn’t require you to even leave your house. If getting involved and getting out there isn’t for you, you’re not the only one. I didn’t always want to be involved and get out there. I still have a blend of outside and online activities I participate in to share my voice. You can start a blog to share your experiences and what you feel needs to be improved in the world of AYA cancer care. You can write articles about your experiences, advice you have for others, or problems you see in the AYA cancer world, for awesome cancer organizations like Cancer Knowledge Network. You can sign petitions or share the causes championed by groups like Critical Mass, which push for local and national governments to improve the resources and care afforded to AYA patients and survivors.
With small steps, AYAs can work together to make sure all of our voices are heard and more of our needs are met. I started my own blog, www.teen-cancer.com, back in 2009, because I knew of no other platform to comfortably and confidently share my voice. Now, I am so glad to be able to share my voice through Cancer Knowledge Network too. I think it is wonderful that CKN has taken its responsibility to uphold the standards of its Patient Included status so seriously. We, as AYAs, need every opportunity we can get to share our voice.
Clarissa Schilstra is a two-time cancer survivor. She was diagnosed with acute lymphoblastic leukemia for the first time when she was two and a half years old. She went through two and a half years of chemotherapy and survived. She led a happy and healthy life until June of 2007, shortly before her 13th birthday, when her cancer relapsed. She then went through another two and a half years of chemotherapy, this time accompanied by radiation. She is now twenty-three years old and a graduate of Duke University. Her passion is helping others cope with the ups and downs of life during and after cancer treatment. She currently lives in Sydney, Australia and works as a research assistant in the Behavioural Sciences Unit of the Kids Cancer Centre at Sydney Children’s Hospital. She is part of a team that focuses on developing interventions to help with the transition back to school for children and adolescents who have been diagnosed with cancer. In the future, it is her goal to become a pediatric clinical psychologist and she would like to continue to work in research to help improve the psychosocial support services available to adolescents and young adults who have serious illnesses. As a CKN Section Editor, Clarissa hopes to provide advice based on her personal experience and to share relevant news and research to help young adult patients and survivors find new ways to live their best life in spite of the shadow of cancer. You can find Clarissa’s book, Riding the Cancer Coaster: Survival Guide for Teens and Young Adults, on Amazon.com. To learn more about Clarissa and her book, or to find AYA cancer support resources, visit her website and blog at www.teen-cancer.com.