As any cancer community member knows, receiving a diagnosis can change your perspective on nearly everything. If you had lived a previously healthy life, you find out just how much harder life can be, even when treatment is going well. You discover the complicated nature of healthcare, specifically in the United States.
We get to hear today from one of our community members, Bethany, about what it was like to advocate for change at the national level by participating in Hill Day. Read on for more about her adventure!
Please introduce yourself! Tell us your name, where you live, and your favorite Cactus Cancer Society program.
My name is Bethany Ross and I live in Nashua, NH. My favorite Cactus Cancer Society programs are the art workshops. I love being creative and meeting other cancer badasses. Although, I am signed up for the next Lego building workshop and very excited for that!
What is Hill Day, and why did you decide to participate?
In June, I went to Washington DC with the National Coalition for Cancer Survivorship to talk to congress members and staffers about new cancer legislation that was introduced called the Comprehensive Cancer Survivorship Act (CCSA). I’ve been doing advocacy with NCCS for a few years now but previously had met with staffers virtually; this was my first year meeting with them on Capitol Hill. I’m a steering committee member of the Cancer Policy & Advocacy Team (CPAT) with NCCS.
For me, cancer advocacy is a way to take getting diagnosed with Stage IV neuroendocrine cancer five years ago at the age of 30 and make it have meaning. I truly believe the meaning of life is to leave the world better than you found it and through cancer advocacy I feel I am able to do that. I tell my story even if my voice cracks because there is no one else that can tell my cancer story like me.
What was the most challenging aspect of Hill Day?
I had gotten my monthly hormone injection for my cancer the week before and was dealing with some extreme symptoms of my cancer so walking around Capitol Hill was a lot! I had no idea the office buildings were so big and spread out. At one point I just sat on the floor of a Senate office building, because I was exhausted and there were no chairs in the hallways and took a selfie that I posted on Instagram as “peak cancer badass life”.
What was the best part of attending?
The people I got to meet were amazing. I started every meeting by letting people know that I just had treatment the week prior and asked where the nearest bathroom was and made a joke about the puke bag I was carrying around just in case. It was a great way to break the ice and simply explain the true effects of having cancer. It also showed that cancer affects everyone, as I don’t look like what people think when someone says “Stage IV cancer”.
Some people are very serious in these meetings, but for me, I am who I am and that is who you are going to get in these meetings. I feel like it gives a much more real and personal touch, especially when these staffers are meeting with people back-to-back all day about so many different issues.
Is there anyone you met in particular who sticks out in your mind, either another patient, a legislator, or someone else to whom you explained your cause?
One of the last meetings of the day was with Representative Annie Kuster’s office. I walked in early because I needed to sit down and cool off. I explained why I was early and was welcomed by everyone there, asking me if I needed anything or what they could do to help. We bonded over all being from New Hampshire and talking about things around the office. When I met with the staffer, Lizzy, she explained her own connection to cancer and gave me a 100% yes that Rep. Kuster would co-sponsor the bill. It was an incredible moment as I was the only person at Cancer Patient and Advocacy Team from New Hampshire, and therefore was the only one that could have made this happen. Seeing Representative Annie Kuster’s name on the list of co-sponsors a couple of weeks later filled my heart with so much joy.
What advice do you have, if any, for others who would like to get involved in Hill Day? Is it still possible to be involved this year?
Yes, definitely reach out to NCCS! They taught me everything I know about being an advocate and we always love to have new people join. Hill Days are usually once a year but meetings with your elected officials offices can be done at any time!
Thank you so much, Bethany, for speaking with us about your experience with Hill Day! We are so proud to have you in our community!
