A little history to start CCAM

CCAM

Happy New Year and happy Cervical Cancer Awareness Month (CCAM)! The new year is such an important time for renewal and a way to kick off the year on the right foot. For me, I believe how we start this month determines our entire year for our community. It’s very important to me that we are all engaged and active. You’ll notice on social media that we are always more active than usual during this month. You are our messengers and we want you to be advocates who act. Don’t just like a post, but share it. Engage with our online communities and share your knowledge.

When I started this organization in 2005, it was out of a need for more advocacy in the cervical cancer space. I was healed physically from my cancer, and looking for something more. I wasn’t sure exactly what that was, but I just knew I needed it. It’s ironic because I didn’t go into this thinking I would beat my cancer and come out as an advocate. It was just the opposite for me. I wanted to forget the past few months and move on with my life. I certainly tried to leave it all behind me, but that wasn’t happening. I thought about cancer nonstop and in the few brief moments that I wasn’t thinking about it, others were. There was no escaping it.

As I grew to understand the possibilities of actually eradicating cervical cancer, I wanted to share it even more. In what free time I could find, I researched every single thing I could about this disease. My research lead me to some of the most well-known people in the cervical cancer space. I started emailing them and to my joy, they were open to meeting and sharing. This was before all the hoopla of an HPV vaccine and the possibilities of all of our efforts were endless.

The more knowledge that was shared, the more I wanted to do my part — as a person who had experienced this disease first hand. To this day, I am still so shocked by the sheer fascination of a doctor or researcher when I share my story. They truly do care. The really want to make a difference. It’s really personal for us, but it’s personal for them. I’ve found some of the most caring industry folks in my journey to become a better advocate. Sure, there are companies who are out to make a profit, but there are industry folks who actually do care and get that this is a cancer that we can do something about.

As a woman, who has experienced this disease first-hand, how could I not do my part? My part is sharing my story. Sharing our stories. Our stories are powerful. When I looked at others in the space and what I could do to help and not duplicate, it was my passion for storytelling. As a TV producer, that’s what I’ve spent the majority of my career doing — sharing stories. During my research I didn’t find many stories of real women, who were sharing their stories. You could also say that I did it for selfish reasons. My cancer back in 2001 was lonely and isolating. I had great support, but what I most needed were women who had experienced what I went through. I am proud of the army of advocates that we are building. We’ve grown so much over the past decade with women sharing in their own way. Some will share on large platforms and become national advocates sharing on the legislative floor, others will share with their family friends and local community, others will share in being a support to a recently diagnosed sister — all equally important.

We started this organization with simple story telling through our HPV parties. We’ve decided to officially change the name of the organization and you will see the we are rebranding all of our programs and projects. We will be bringing the parties back this year, after a Cervivor rebrand.

One of the most important things we do is the sharing of stories via this website which we just redesigned and I am so proud of it. I hope you will go take a look around and let us know your thoughts. If you are a cervical cancer survivor, I hope you will upload and share your story.

Remember we shine every month, but January is our time to shine! Here’s what you can do:

  • Follow us on our social media platforms and like, comment & share (we’re also on Pinterest!)
  • Be an engaged advocate who acts
  • Share your story
  • Be responsible in sharing the most current and up-to-date guidelines
  • Ask what you don’t know. I promise you won’t be the only one!
  • Overdue for an exam? Schedule one today.

It’s really that simple. We are our sisters’ keeper, and let’s start with a healthy cervix.

Cheers to 2016!

Tamika

My Cervical Cancer Advocacy Philosophy

By Cervivor Ambassador Heather, Indiana

HeatherEight years ago, at age 32, I was a cervical cancer patient.  Surgery, chemo, radiation, fatigue is how you could describe my cancer world at that time.  

I will always have a cancer world; there’s no going back. Although now, the following words are used to define it:  passion, sisterhood, awareness, vulnerability, empowerment. Now, at age 40, I’m a cervical cancer advocate.

I didn’t set out to be an advocate at first. It just evolved into a significant part of my life.  

It started with a little segment on the local news during Cervical Cancer Awareness month. Then a few speaking engagements in my city; usually during the month of January. A few years later, I found myself in Washington, speaking to the FDA and doing some work with Roche. Recently, I spoke to Indiana government officials. And now, I’m proud to call myself a member of Cervivor; Tamika’s vessel through which I can do even more.

Someone asked me recently what my Advocacy Philosophy is. I’d never really thought about it, but after some thought and reflection; here’s what I came up with … at least at this point in my journey.

DO WHAT YOU CAN, WITH THE NOTION OF PUSHING YOURSELF JUST A LITTLE

If you want to advocate, use the resources you have to “just do something.”  Think about the time you have, if you want to spend money or not, the connections you have, and ultimately what you’re comfortable with.  

  • Do I have time to attend a local event?
  • Am I comfortable asking my doctor to connect me with other survivors in my area?
  • Do I want to spend some money to go to Cervivor School?
  • Is there a social media group I could join or follow?

And then, when you’re ready, push yourself … just a little. When I first found myself advocating, I spoke locally. It was great, but I just waited for someone to ask me to speak. I realized that I could push myself just a bit. I was ready to step outside my comfort zone a tad more. I sought out even more speaking opportunities, I started posting on social media about HPV and cervical cancer, I went to see Someone You Love at a local film festival, and met Tamika Felder there!

Do something, and then push yourself:

  • I’m attending a local event, maybe I’ll go up and talk to one of the speakers.
  • I’ve joined a local support group, I’ll ask to see if anyone wants to meet up!
  • I think I’m ready to send my story to Cervivor for them to publish.
  • I’m going to share this reputable article about HPV on social media.

EVERY ADVOCACY STEP YOU TAKE WILL LIKELY LEAD TO ANOTHER OPPORTUNITY

This has proven to be very true for me. I told my doctor I was willing to do something, so when the local news asked him to do a segment; he recommended me to be the survivor for their story. When Kirk Forbes (his daughter and I had the same oncologist) asked my doctor for a survivor to speak at a local event, he recommended me. Kirk and I have gone on to speak at many more events together. At one event there was a doctor out of North Carolina who was working with Roche on their HPV screening test; she would later ask me to speak to the FDA. Speaking to the FDA led to more work with Roche. The people at Roche first told me about Tamika Felder, and the rest is history!  

I can honestly say that being willing to advocate has led me to so many wonderful opportunities, which are usually a stepping stone to the next thing I do. One thing leads me to another. The most awesome piece about this is the amazing people I’ve met along the way; doctors, industry people, other survivors, and loved ones of some who have lost their lives to cervical cancer. My choice to advocate has opened so many doors as well as filled my heart with friendship and love.  

THE LITTLE THINGS OFTEN MATTER MOST

I’ve found that it’s the little things that often have the most impact on me and others. Simply posting and sharing things on social media has led my friends and family to see me as a resource. I didn’t intend for this, but many have messaged me for advice and thoughts; usually on HPV and the vaccine. Spur of the moment conversations that naturally arise (in the lunchroom at work, when visiting with friends, or even in the dentist’s office) has cleared up a lot of misconceptions and confusion that exists in the world of HPV and gynecologic health.

At first when I found myself doing these “little things,” I didn’t even realize I was advocating. However, I think they are. Speaking to a room full of strangers is one thing, but helping friends navigate the confusing and controversial world of HPV or advising others what to ask the doctor at an upcoming visit is so much more satisfying for me; not to mention immediately helpful to those close to me.  

BE VULNERABLE

I’m on a bit of a Brené Brown kick lately. If you haven’t listened to her or read a book of hers; you should. At least Google her! She is a research professor who has done a lot of work with vulnerability. One of the messages that I’ve gotten from her is that being vulnerable isn’t negative. Being vulnerable is positive and can be very empowering. From her book, Daring Greatly, she defines vulnerability as “uncertainty, risk, and emotional exposure.” She also says that vulnerability is, “the birthplace of love, belonging, joy, courage, empathy, and creativity.”

In regard to advocacy, I take this message from her: In order to advocate for HPV and cervical cancer, we have to take the risk to emotionally expose ourselves and our stories in order to advance our cause. The uncertainty of where this will lead is hard to look past; however, it will lead us (and those we advocate for) to a sense of belonging, courage, hope and empowerment.  

Advocating means being vulnerable, which isn’t a bad thing.

So, as of  now, that’s my “advocacy philosophy.” I’m sure it will change and evolve as I do this important work with others.

What can you do to advocate? If you haven’t already, what is something you feel comfortable doing? If you’ve already taken steps, how can you push yourself to do something more? What’s something little you can do? Be vulnerable, do something! I promise it will lead you to amazing opportunities and people as well as fill your heart!