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I’m Still an AYA

by Liz HilesSurvivor, Bladder CancerMarch 28, 2023View more posts from Liz Hiles

I aged out of AYA before I was even diagnosed, but I’m still an AYA.

My bladder cancer diagnosis was handed to me on August 12, 2016. I was 40 and only 100 days from turning 41.

I was floored. Utterly and completely shocked. I was blindsided and thoroughly pissed off.

How was it that I had to “fight” for over two years for a cancer diagnosis I didn’t even know existed?!

Why didn’t anyone bother to check for this sooner?!

How was my tumor missed in scans?!

Why had I never heard of bladder cancer?!

These questions, plus a billion and one more, flooded my brain. I never got many answers, let alone adequate ones.

The following eight months of my life consisted of coasting through by the skin of my teeth. I immediately went on medical leave and had proverbial blinders on, as I went through the motions of life and the brutality of bladder cancer surgery and treatment.

In 2016, virtual support meetings weren’t a thing. I putzed around a bit, trying to connect with people on social media and the Gryt Health platform with minimal success.

In 2017 after treatment ended, I attended some meetings at my local Cancer Support Community, but I was not impressed, as much of the programming was geared towards retirees and people with families. Like many other forty-somethings, I did not have the luxury of a work-free week. The peer-group demographics and meeting times didn’t coincide with my lifestyle. I quickly moved on from those and started participating in my local ostomy support organization, which felt much more supportive, like a new social “home.”

Three short years later, when the pandemic hit, I was desperate for safe connections and support. I learned about the AYA community but saw that I was already “too old” for it. In fact, I had aged out of AYA, before I received my diagnosis!

I was disappointed, but as I learned more about what it meant to be an AYA and the struggles that AYAs faced, I realized that many of those attributes described me to a T. I worked up the courage to join a Stupid Cancer Digital Meetup, thinking, “What’s the worst they can do? Ask me not to come back? Kick me out?” So I went.

At the time, it was the best experience I had. I was accepted and quickly made positive connections with others. Eventually, I learned of other meetups and virtual events and began attending those.

Despite being slightly older and technically not in the AYA age range, I realized that the AYA age range is more of a suggestion than an absolute. Just because you hit the big 4-0, it doesn’t mean that the issues you struggled with previously as an AYA cancer patient simply disappear. You are still an AYA, even if you age out. You are still dealing with the same issues and deserve to receive the same type of specialized support.

Having a birthday doesn’t make you more or less of an AYA cancer patient or survivor, especially an AYA survivor, because survivorship is for life. Aging out of that AYA age range may mean your role in the community may shift. It may mean that your life priorities are in a slightly different place than that of 20 or 30-something-year-olds. So maybe you seek out different support options, decrease attendance with some groups, or form private friend groups that communicate via group messages on text, email, or direct messages on social media or WhatsApp.

It doesn’t mean you have to disappear into the woodwork or resign yourself to attending support options with mostly 65+ year olds who are also in completely different phases in life and probably don’t want to discuss the same topics you want and need to engage and feel the camaraderie. Nor does it mean that you have no place to land for support.

As the AYA community continues to grow, so does the long-term survivorship subgroup. Many previously diagnosed AYA patients are now in an older age bracket, and some survivors suffer life-long side effects. I proudly stand in this survivorship group. We have niche needs that will continue and increasingly need to be met.

We may just have to pave the way, but it will be worth it. Most of all, we deserve it. After all…we beat cancer, so we have superpowers! 😉

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