The Gift of Creating Connections

My name is Jodi Madsen. I am an active cervical cancer patient, in both treatment and spreading awareness about the importance of women’s health and HPV. I was diagnosed with stage 3C2R adenosquamous cell carcinoma of the cervix in February of 2021. I live in North Dakota with my husband, who serves in the United States Air Force, and our two little boys. North Dakota isn’t really your prime real estate for any medical specialty, so if you’re going to go looking for gynecologic anything, you’d have the same amount of luck finding oceanfront property outside their practice. I travel ten hours to Omaha, NE for every single appointment since there are no qualified persons within a reasonable range. My insurance had some input on that decision and actually was kind enough to make it for me! While I love my care institute, I am sad to miss out on living closer to women in similar situations and being able to participate in support groups. 

From the beginning of a cancer diagnosis, there is one word that has always lingered close by. Lonely. I think the bottom line of that comes down to knowing I can’t convey my feelings correctly to those I love and that is incredibly isolating and frustrating. There are so many things that instantly change when you become the patient that you don’t even realize. In an effort to de-alienate myself I started a blog. I started it for many reasons, the biggest was to hold the connection with my friends and family, as well as nurture new connections and share with women unfortunate to be met with the same diagnosis should they run across it in the future. That blog gave me a spark and was always something for me to do to pull me out of the gallows. Believe it or not, even the most annoyingly chipper of us end up down there quite often. I haven’t written much lately and the “Oscar” radiating off me is uncanny. 

One day last fall, I was scrolling Facebook in a large cervical cancer support group, and I saw someone asking for help with writing blogs for CCAM (Cervical Cancer Awareness Month) for a smaller organization. Nervously, I mentioned that I have been writing blogs about my experience. I liked the organization’s page, joined the private group, and began freaking out. Who do I think I am, thinking I can use this voice? Until I saw the community I just stepped into. Each question is answered with care and love no matter the nature. Every single woman is encouraged to share their stories. Not a writer? They have prompts ready! I was so happy seeing the patient being the center light here and what looked like genuine friendships showing up all over the place. What is this wonderful island offering me so much hope after less than ten minutes of interaction?! Cervivor

Not long after these first few interactions, a day came along with an event called, Creating Connections. It was a Zoom meet-up with a speaker and two Cervivor Ambassadors acting as moderators to keep the conversation loosely based on parenting with cervical cancer. It was my first interaction of the sort that was like a support group and it was wonderful! There were about 15 women present and after we took turns giving small introductions to our stories, we were able to listen to some wonderful pointers on how to explain things to our little kiddos regarding treatment, medications, time away from home, and other key confusing factors for them. 

That night I met a pal, Caroline. Caroline stood out because she has little children too, and lives near where my husband is from. Just like that, with a two-second snippet of her introduction, I knew I had found a person to meet in real life when I am in that area. Because I joined that online meet-up last October, I now have a friend to show me a new coffee shop and get away from the family for a bit when I join my in-laws for a week. How cool! Let’s add this to the list of incredible feelings I get from being a part of the Cervivor community. The power I feel that I have gained from the support of both the Cervivor organization and the Cervivors themselves is insurmountable! Talk about a boost!

As time has passed and treatments have come and gone, I have become less active in both my own blog and posting in support of Cervivor. Many reasons have contributed to my absence, but because of the family environment, I can always hop back in like I never left. Much like I did a few weeks ago when attending another Creating Connections. I was on the road, so I had to be muted for most of it, but getting to listen to my friends brought in a brightness I needed so deeply in my soul. What I didn’t know I was needing, as a cherry on top, was the number of attendees waiting to introduce themselves to the rest of us. Several of the Creating Connections meet-ups I have been to have been about the same 12-20 people in attendance. We are able to make deeper connections and learn much more about each other when it is the same smaller group of us, but there is an absence of diversity. 

So when I logged on to see nearly 30 women in attendance, I was in shock! (And also a little curious about how long it would take us to get through introductions! Ha!) There were women with brand new diagnoses and women who have been a patient for months and had just found Cervivor. In every case, each new introduction tugged on and successfully pulled some tears. Where I was nearly a year ago, here these women are fulfilling what I had dreamed for the reach of Cervivor. I have wanted to see more women finding this incredible group sooner in their journeys, and it was happening right before my eyes. Every time I thought about these beautiful women that came off so incredibly strong right out of the gate, the tears overtook my hard-shelled heart. 

I know how hard everyone in the Cervivor community works behind the scenes, and it’s amazing the amount of things you see put together. The number of things they are constantly working on would blow your mind. To be associated with these hard-working ladies is an honor, and to be able to recognize the growth of the group is so cool! I’m not sure if it is success that you can measure by attendance and participation, but it sure feels like it. Thank you, Cervivor, for giving me another home that just fits, and the opportunity to see the growth and success, as well as take pride in such an incredible organization. You help me live through so many seasons, and with this one, I am beaming with pride.

Jodi is the recipient of Cervivor’s 2022 Brittany Wagner Social Media Advocacy Award and is a passionate advocate. She shares the highs and lows of living with cervical cancer and brings light to our community.

Let’s Talk About Below-the-Belt Cancers

When the calendar turns to September, it’s a good reason for anyone touched by gynecological cancer to share their story because September is Gynecological Cancer Awareness Month (GCAM).

For those of us in the Cervivor community, September is a significant opportunity to pull out our advocacy boots (and dust them off if they haven’t been used in a while), put below-the-belt cancers in the spotlight, and pick up our momentum to carry us through the remainder of the year. 

Why is GCAM so important?

  • Late-stage cervical cancer is being diagnosed at higher rates in the United States. Historically, cervical cancer has disproportionately impacted Black and Hispanic women. In this study, the overall prevalence of the disease was higher in Black women and there is a large increase in diagnoses for Non-Hispanic White women (CNN).
  • Uterine cancers are on the rise, especially in Black women. It is quickly making its way to becoming the third most common type of cancer among women (NY Times).
  • Fertility and quality of life are still impacting those diagnosed with gynecologic cancers (Oncology Nurse Advisor).
  • Intersectionalities in sexual orientation as well as race and ethnicity show significantly lower odds of undergoing routine cervical cancer screenings (Health Day).
  • Reducing social detriments can improve quality of life, increase survival rates, and close the gap in racial disparities (ASCO Post).

We know there are so many more to list which is why Cervivor continues to be actively engaged in gynecologic cancer awareness. We’re committed to sharing our stories, spreading awareness, and showing the people impacted by gynecologic cancers. We’re facing these disparities head-on!

How can you get involved this GCAM?

  • Share Cervivor content during GCAM. We will have plenty of graphics, articles, and other resources to share with your social media network, across all platforms. Make sure to follow us on Facebook, Twitter, Instagram, TikTok, and Pinterest.
  • Wear Teal and White on #TealandWhiteTuesday. Don’t forget to tag us on Instagram and post your photos in the comment of our Facebook posts!

  • Share your Cervivor Story. Have you shared your story with us on Cervivor.org? Sharing your story on our site is a powerful tool for getting your story out there. Our template guides you with questions, to help you share your cervical cancer story in a way that is personal to you. You can share as little or as much as you like. Once you have submitted your story and it is published, you will be able to share the link with others. Need help getting started? Send us an email at info@cervivor.org!

  • Contact local media to share your Cervivor story. Many times, local news stations, newspapers, and neighborhood publications are looking for content. Reach out to them and share your story. If your story is on Cervivor.org, share the link with them when you reach out.

  • Host a Cervivor Meet-Up. Meet-Ups are local gatherings of Cervivors, networking and sharing in a social environment. You can hold a Cervivor Meet-Up in a coffee shop, restaurant, bar, or anywhere you feel is a welcoming and relaxed place for Cervivors to talk and share. If you’re interested in hosting a Cervivor Meet-Up in your area, contact us at info@cervivor.org. *Cervivor recommends following the latest CDC recommendations for any gatherings.*

  • Become a Partner in Purpose. From care team to community member, your role in cervical cancer awareness, treatment, support, and prevention is of the utmost importance to us. Interested? Sign up here.

  • Donate to Cervivor or host a fundraiser on behalf of Cervivor.

We look forward to a successful GCAM and can’t wait to see how our Cervivor Community comes together to bring awareness to gynecologic cancers!