AYA Week Reflections

As AYA Cancer Awareness Week draws closer, I am reflective on how much the AYA cancer community means to me. I recall how for two years after treatment, I didn’t even know this community existed and how today, I can’t imagine my life without it.

During my treatment in 2013, I didn’t want any part of the AYA cancer community because I didn’t want to be labeled as the girl with cancer. I did not want to be the youngest cancer patient in the radiation waiting room, or to be told yet again that treatment would be easy because I was young (by the way, it wasn’t), or to become more familiar with insurance deductibles and FMLA than someone twice my age. I just wanted my pre-cancer life back. I wanted to go on dates, to go to the state fair without the worry of being immunocompromised in a large crowd, and to be able to eat whatever I wanted without getting sick.

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I first met a fellow AYA cancer survivor two years after my treatment and it changed my life. I was no longer alone. Someone finally understood me. I had a community and I felt like I belonged for the first time in a long time. Alongside other AYA cancer patients and survivors, I was able to process what I had just gone through and I gained knowledge about what survivorship should look like. This growth gave me a sense of purpose as an AYA cancer survivor that I needed.

Today, I am a seven-year AYA cervical cancer survivor. I share my story with a lot less fear than I did five years ago because I want people to see that I am what an AYA cancer survivor looks like. I want people to know that a cancer diagnosis in your 20’s and 30’s is difficult to navigate, not only during treatment but as a survivor. I also share my story with medical professionals so that they can better understand the unique needs of the AYA cancer community. And I mentor AYA cancer patients and survivors, so they don’t feel the loneliness that I felt during and after treatment. No one should go through cancer alone.

I’ve watched the AYA cancer community grow since 2015 from a few scattered voices to one loud collective voice. This community’s advocacy and momentum has generated much needed attention and change that will impact not only our lives, but the lives of future AYA cancer patients and survivors. During AYA Cancer Awareness Week, we deserve to recognize and celebrate our community’s accomplishments.

Emily Hoffman is a seven-year cervical cancer survivor who was diagnosed with stage 2B cervical cancer at age 30. After cancer, Emily didn’t realize she even had an advocacy voice until she attended her first Cervivor School in 2016. Today, she is a patient advocate and active Cervivor Ambassador who shares her cancer story to raise awareness for ending cervical cancer and to educate others on the importance of cervical cancer screenings and prevention. Emily is the recipient of the 2020 Cervivor Spark Award. She is currently pursuing her certification to become a cancer registrar.

Never In My Wildest Dreams

The day is almost over here on the East coast, but there is no way that I could let this day (January 25th) end with acknowledging how special it is to me and so many others out there. 13 years ago today, Cervivor was founded (as Tamika and Friends, Inc.). This organization was founded out of my own cervical cancer diagnosis 16 years ago. My experience with cervical cancer not only changed my life but also, everyone around me. I made a promise that if I survived this experience that I would make my survivorship count. I honor that promise with every single breath I take.

WNBA Champions Cause to Eliminate Cervical Cancer 2005

When I created this organization I had no idea that January was Cervical Cancer Awareness Month, or that teal and white were the official colors for cervical cancer — there was a lot of orange!

All I knew is that I wanted to make a difference in the lives of others. I didn’t know how or where to start. I just knew that I had to do something.

Washington Post 2011

As most nonprofits, we started small — very grassroots. Sometimes I sit back and think of our first official meeting  — the binders that I created with orange butterfly stickers. They were hideous, but filled with an action plan that has brought us to where we are today. I sit and think of all of the things we’ve done since then, and it just seems surreal.

NYC Walk 2011

We held so many events over the years, but what I’m most proud of is the community that we’ve created. A community of not just women diagnosed with cervical cancer, but a community filled with caregivers, clinicians, researchers, health educations, social workers and so much more. I am proud of the industry partnerships and their support of our much-needed work. A lot of work that goes unseen, but is felt around the globe.

Our first Cervivor School January 25, 2014 NYC

Today also marks 4 years since we launched Cervivor School — our advocacy training retreats. We’ve had over 100 women graduate from our Cervivor Schools. This unique event is the leading advocacy training for women diagnosed with cervical cancer in the country. Our Cervivor School speakers are some of the most sought-after experts in the cervical cancer space. Our graduates are some of the most requested cervical cancer patient advocates.

This year will mark the return of some of our original programs and events (hello Stirrup Stories!), as well as new campaigns (I can’t wait for the big reveal!). We’ll continue providing our community with support and the latest news and updates. Our work has afforded us a seat at the table, and we are thankful for that. We’ve worked hard for that.

First global advocacy trip. Beijing, China 2011

My promise to you, our community is that we will continue to be an expert in the field of patient advocacy. We’re not going anywhere! Not while there are still women not being screened. Not while the HPV vaccine is still underutilized. Not while the stigma of HPV exists. Not while women feel alone. Not while women are losing their fertility, and not while women are still dying. There is way too much work for us to still do. I’m more determined than ever. I know you are, too! You’ve shown it this month alone.

Thank you for your continued support — however small or large. Thank you for helping us spread our Cervivor footprint. Thank you for helping us end cervical cancer. Never in my wildest dreams could I have imagined that we would be here. But, here we are 13 years later, dedicated to what we started, still doing what we said we would do  – working to end cervical cancer. It hasn’t been easy, but neither was cancer.

xo Tamika                                                                                                                                                                                                                     16-year cervical cancer survivor AKA Cervivor                                                                                                                                          Founder, Cervivor. org

Apply to attend our upcoming Cervivor School here.