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RECAP: CCAM, Cervivor Schools, Advocacy

By Cervivor Ambassador Erica

Cervical Cancer Awareness Month has now ended, although I am not sure I can put into words how amazing this #CCAM was, I am going to try. It was so wonderful to see all the accurate information about cervical cancer being shared across multiple social media platforms. It isn’t just about social media, though! In January, I was able to participate in two fabulous Cervivor experiences: Cervivor School Hoosier and Cervivor School South.

Cervivor Ambassadors Heather, Melissa and I were able to host a one-day live event, Cervivor School Hoosier, here in Indianapolis on January 16 and Tamika was able to join us too! Cervivor School Hoosier was a day packed full of learning and empowerment! We added some great new graduates to our Cervivor Ambassador team. During this Cervivor School, we learned about HPV, up-to-date information about screening, cervical cancer treatment options, learned about public health as it relates to the legislature, and discovered how powerful our stories can be.

I was also able to attend Cervivor School South in Charleston, S.C., during the last days of January for a live four-day event which was packed full of information, empowerment, and sisterhood. I am sure people are wondering what it is about Cervivor School that makes me want to keep coming back. This is the third Cervivor School I have been able to attend. I can honestly say that each Cervivor School has brought along its own important information. A few highlights of Cervivor School South include learning more about how to be an active advocate, learning how to answer media questions related to cervical cancer screening and prevention, hearing medical professionals and fellow Cervivors talk about how important it is to remember to treat the whole patient, and learning about the global impact of cervical cancer.

One powerful thing I was able to witness while in Charleston was seeing a new Cervivor Ambassador in action!  On Saturday night of Cervivor School, I got to see Cervivor Ambassador Jessica from Kentucky in action advocating for cervical cancer and HPV awareness! I stayed up late and spent some time with Jessica. While I was speaking with a couple about cervical cancer, and reinforcing to the woman that she did the right thing by opting to vaccinate her teenage daughter, I was also listening to Jessica. Jessica was taking the knowledge which she gained at Cervivor School Hoosier and Cervivor School South and providing accurate information to spread awareness! I thought to myself, “This is what it is all about. Advocates using the information they are given and advocating!” Cervivor School works! It is such a powerful experience and it works! It gives individuals the tools needed to spread the word in an impactful, meaningful way.

Speaking of experiences, here’s another one I had while in Charleston. On Saturday evening, a few of the Cervivor Ambassadors were in the hotel lobby playing a game after dinner. While we were playing the game a man walked by and joined in the fun. After a few rounds of the game, we told him what we were doing in Charleston. We let him know that we were in town with Cervivor, a group dedicated to eradicating cervical cancer through our advocacy work. When we told him this, we thought he wouldn’t be interested and would want to go right back to the game.  Boy, we were surprised! He said, “I got a shot to protect against spreading that, isn’t it spread by HPV?” We were floored, to say the least. We wanted to know more: How did he know to get the vaccine? Where did he learn about it? Did he have a story? As it turns out he had a story of his own and was eager to share. Tamika was so moved by this exchange that she invited him to come and be our keynote speaker at our Cervivor School graduation ceremony. I am pretty sure that was a first! We had a man as the keynote speaker at the graduation ceremony for a school focusing on advocacy and spreading awareness about cervical cancer. You might be wondering: How did it work out having a man as the keynote graduation speaker? The experience for me really reinforced the idea that HPV isn’t just a female issue. HPV is a human issue! Jeromy explained that, as a man, he had wanted to get the vaccine to protect himself and any future partners from any of the HPV-related cancers. This is something that is important for us to remember as we advocate for awareness about cervical cancer. The HPV vaccine also protects against other cancers, the following cancers can be reduced through the use of the HPV vaccine: penile, anal, oropharyngeal, vulvar, and cervical. it really is a human issue!

Are you a cervical cancer survivor or patient who is interested in becoming an advocate to help eradicate cervical cancer? Cervivor will be hosting another Cervivor School in Washington, D.C., May 12–15.  More information will be available soon on the Cervivor website. In the mean time, have you shared your story yet?

Advocacy: Why I want to be heard

By Cervivor Ambassador Melissa B.

Cervical Cancer Survivor Story | Bleeding With Intercourse

Three years ago I was diagnosed with stage 3B cervical cancer. At 32 years old, I was completely caught off guard. Being diagnosed changed my world. I was confused, scared, shocked, and angry to say the least. What went wrong? What did I do wrong? Why was I thinking I did anything wrong?

I was told my cancer was caused by a virus, HPV. Did I know what HPV was? No, not entirely. I knew it had something to do with causing cervical cancer. What I did not know was how common it was, how many diseases and complications it causes, and just how scary it really is. I was so uninformed. As time passed after diagnosis, I found myself researching more and realizing that I was not alone in being uninformed. Cervical cancer is just not one that is commonly discussed. Everyone is bombarded with pink ribbons, but how many even know what the color is for cervical cancer? I sure didn’t until I was diagnosed.

There is also little being said about what a woman truly experiences when she receives a diagnosis of cervical cancer. There is the physical aspect of surgery and treatments, but there is also a more important piece that I believe needs attention, and that is what a woman’s soul experiences from a diagnosis.

I felt broken and ashamed.

Broken: I could no longer have children. My belly was scarred. My vagina was scarred. I lost my hair from chemo. I was weak during treatment and struggled at times to perform daily tasks. I felt like less of a woman. What if I died?

Ashamed: my cancer was caused by a sexually transmitted virus. Like an STD? No, STV but would anyone realize the difference? I didn’t want anyone thinking I was a “dirty girl” or “slutty.” What would my friends and family think? What would I tell everyone?

I stayed to myself for the most part during my treatment. It wasn’t until I was finished that I started discussing HPV and my cancer with others. My doctor’s office asked if I was willing to interview with a local news station for a piece that was airing for cervical cancer awareness month. They were wanting a survivor’s story to share. This was great opportunity to reach many. I agreed, and after getting such positive feedback from my peers and family I saw that I should start seeking other avenues to share my story.

I was finished with treatment, and I had survived. Being a cancer survivor is such a great accomplishment, but there is also survivor’s guilt. Not everyone gets to where I am. Not everyone gets the second chance at life. I have been given that second chance, and I must do something with it. I believe I survived for many reasons, and one of those is to advocate.

I must tell my story. I must reach out and offer a listening ear or shoulder to cry on. I know how hard a diagnosis is to wrap your mind and life around. I must be a voice to help break down the stigma of being a “dirty girl” or “slutty” because I know what it feels like to think of your cancer in this way, and I don’t want others to ever have to feel like I did. I also know what it feels like to be alone in your cancer journey, and I think no one should ever feel alone in any aspect during a time like that. I must help to educate about HPV. I must stress the importance of screenings. Everyone needs to be talking about HPV and cervical cancer, who better than someone who has experienced it first hand? I advocate because I have a story, and it can help others.