Summary:
Patient advocate and cancer warrior, Megan-Claire Chase, talks about the struggles of being an Adolescent or Young-Adult (AYA) cancer patient, and explains how she was able to work through them by joining AYA support groups and by expressing herself on social media, thereby making “authentic and amazing connections”.
The Authenticity of AYA Connections
Once you’re diagnosed with cancer, it’s only a matter of time before you realize cancer is bigger than what you can handle alone and that you might need support. Though many hospitals and cancer centers offer free cancer support groups, if you are an adolescent or young adult it can be difficult to connect with anyone in those groups due to the massive age difference.
A cancer patient is considered an adolescent or young adult (AYA) if they are diagnosed under 40 years old. There are some organizations that extend the age range for an AYA to under 45 years old, too. There are distinct differences in how the cancer experience is handled when you’re diagnosed at a younger age.
Many of us were single and dating with the hope of having kids one day.
Many of us were married with or without kids.
Many of us were in college or working full time.
Then cancer brought our lives to an immediate halt. There was no way to prepare for it. From the moment you walk into the cancer center or hospital, you immediately notice that practically everyone is a good 15 to 20 years older than you. It’s uncomfortable feeling the stares that are questioning why you’re there because you don’t look like you belong.
This isn’t to say that our families and friends aren’t being supportive, but there is a different kind of support that many AYA patients need. So, where should an AYA cancer patient look for support?
When I was diagnosed five years ago, there weren’t any local cancer support groups in my area. So, I took to the internet and did a Google search on young adult cancer groups. The first one to pop up was Lacuna Loft. I was excited to see so many different free programs offered to help others my age to connect and find support. My favorite program offered is Unspoken Ink. It’s an 8-week writing course that creates a safe space to write about your cancer experience or anything weighing on your heart through different writing prompts. There is a closeness that develops during these courses, especially when you join multiple ones throughout the year. What I love best about Unspoken Ink is that anyone can share their writing out loud. You really get to know people through their writing and friendships begin to develop outside of the course.
That’s how I met Mary Clare. She is a two-time AML leukemia survivor. We started following each other on social media and she read my personal blog Life on the Cancer Train and would often write beautiful and supportive comments on my blog. Then one day in May 2019 I called Mary Clare on my way home from the doctor’s office and that cemented our friendship. We text and call each other regularly. In fact, she was the first guest on the Megan-Claire Show on YouTube presented by Ancora.ai, talking about her clinical trial experience.
I became super active on Twitter last year during my two-month leave of absence from work due to pneumonia and chronic fatigue brought on by a compromised immune system. This space was an unexpected discovery for friendship and support. I’ve met other AYA cancer patients and have learned more about other cancers and even more about the type of cancer I had, which was invasive lobular breast cancer. I’ve been able to chat with other cancer organizations, researchers, and doctors about the need for more AYA resources on what is referred to as #MedTwitter threads. I used to feel intimidated by Twitter because it seems so vast. What I discovered is there is a huge population of creative, brilliant, and hilarious people who have or had cancer. I began to feel a connection with so many people in the cancer Twittersphere here in the US and in Europe.
That’s how I met Rudy. He was a fan of my blog and I was a fan of his YouTube channel Brain Cancer Diaries. Through our Twitter posts and comments, we got a sense of each other’s witty and clever humor, as well as our talent for writing. One day Rudy asked if I would be a guest on his show and I jumped at the chance to connect. We learned more about each other’s cancers and struggles but also discovered we have a ton in common outside of cancerland. I consider Rudy to be my brother and often refer to him as “my bro” on Twitter. He’s so creative and a former TV producer, writer, and musician. He plays a huge part in my cancer story because he has believed in my writing talent from the start and continued to uplift me until I believed in myself.
“There is something freeing about posting your feelings or talking through Zoom with others who just get it.”
Authentic friendships really can form virtually. If you have a question or just want to state how you’re feeling, just post it on Twitter or join one of the digital meetups from an AYA cancer group. There is something freeing about posting your feelings or talking through Zoom with others who just get it. Here’s an example:
Though the cancer experience can be a complete nightmare, it truly does open the door to meet fantastic people that you never would’ve met otherwise. Here’s a list of some AYA cancer groups where you can find support and meet others through weekly virtual meetups. All the programs are FREE.
Elephants and Tea – I really enjoy their weekly Friday happy hours. Sometimes we’re goofy and other times serious. Plus, excellent content on their website and magazine that’s mostly written by young adults, plus great resources for additional support, financial support, etc.
Lacuna Loft – If you love to write, you should check out their Unspoken Ink program. They post content that any AYA can submit to be published. They have arts & crafts programs and even a book club. You don’t even need to worry about supplies or the book because they ship it to you for free.
Stupid Cancer – They have weekly virtual meetups and are known for the annual CancerCon where AYAs from all over the United States come together for a weekend of connection and support. They just had an open mic night where they partnered with Elephants and Tea that was well done.
About the author:
Megan-Claire Chase, also known as Warrior Megsie, is a 4-year breast cancer survivor in Atlanta, GA. She is a sought-after influencer and blogger in the Young Adult Cancer community both nationally and internationally. Her blog, Life on the Cancer Train, is about her life post breast cancer (Stage IIA Invasive Lobular) and the struggles of being a young adult cancer patient/survivor while advocating for better treatments and resources. Megan-Claire’s writing is known for being authentic, raw, and informative with a twist of humor. It is also syndicated on Cancer Health Magazine’s website. She’s been a guest blogger for multiple cancer support sites including Lacuna Loft, SHARE Cancer Support, and Humor Beats Cancer. Megan-Claire was featured this year in The New York Times in April and People magazine in June discussing the concerns of receiving cancer treatments during COVID-19. Her cat Nathan (Natey) Edgar is her pride and joy.