PRESS RELEASE: Cervical Cancer Survivors Train for Advocacy at “Cervivor School”

 

Cervical Cancer Survivors Train for Advocacy at “Cervivor School” During Gynecologic Cancer Awareness Month

Susan G. Komen founder Nancy Brinker to speak to cervical cancer survivors about strategies that drive awareness and impact policy

Sept. 17, 2018 – Timed to Gynecologic Cancer Awareness Month, cervical cancer patients and survivors from across America and Europe will come together Sept. 20-22 in Cape Cod, Mass., to learn how to leverage their own personal stories to become advocates for cervical cancer education, prevention and policy change. Convened by Cervivor, the “Cervivor School” will feature Nancy G. Brinker, founder of Susan G. Komen and the regarded global leader of the breast cancer / women’s cancer awareness and prevention movement.

“I look forward to sharing my story and more importantly, communicating to these brave women the power of their own stories, and how they can make a positive impact in their communities, this country and around the world,” said Ms. Brinker. “I am honored and excited to speak to the Cervivor School, which is doing great work in helping to organize and support women with cervical cancer.” Her talk is the featured keynote address on Sat., Sept. 22 at 8:30am.

Ms. Brinker will discuss the power of women’s stories as a key tool in cancer advocacy, share how she helped build one of the world’s largest cancer advocacy organizations, and share where she believes America as a whole – and cancer advocates individually and communally – should focus next in combatting cancer deaths.

Cervivor School is a networking, educational and motivational event that brings together and mobilizes cervical cancer patients and survivors to become more involved in the cervical cancer awareness and prevention movement. It supports women with training and tools to powerfully tell their stories to a range of audiences – including legislators and policy makers.

Falmouth, Mass.-based Team Maureen is co-hosting the event with Cervivor.org. More than 40 women are expected to attend the Cervivor School – Cervivor’s 10thsuch training. More than 600 women have attended Cervivor School and similar trainings offered by Cervivor’s predecessor organization, Tamika & Friends.

“The more we are willing to share our stories, the lives we can save. We can support women diagnosed with cervical cancer. We can educate about effective prevention with Pap testing, HPV testing and HPV vaccination. And, importantly, we can elevate our voices together to reach policy makers to ensure that cervical cancer screening and prevention programs are funded and implemented,” said Cervivor’s founder Tamika Felder.

“It is often personal stories that can most inspire people to take steps toward change,” highlighted Team Maureen’s founder Eileen Lind.

Cervivor School will be held at the Sea Crest Beach Hotel in North Falmouth, Mass., with sponsorship from Cape Cod Health Care, Hologic, BD, Genentech and Roche.

About Cervivor

Cervivor builds a community for cervical cancer survivors, family members, educators and caregivers to advocate for HPV awareness, cervical cancer prevention, to create meaningful networks across survivors and experts in the field; and to ultimately change the future of women’s health.

About Team Maureen

Falmouth, Mass.-based Team Maureen was founded in memory of Maureen E. Russo, a loving sister, daughter, wife and mother who passed away from relapsed cervical cancer at the age of 37. Team Maureen’s mission is to end cervical cancer by educating about the HPV cancer connection and the importance of prevention and early detection.

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Interested in attending or receiving photos of the event? Contact:page2image1633392

Shelley Ducker

sduckercommunications@gmail.com

202.255.0561

The New Normal is Not For Me

I hate the term “New Normal.” I hate it with all of my being. The “new normal” is something that many people talk about. It refers to what your life is like after cancer. Oncologists, psychologists, radiologists, (basically all the “–ists”), as well as fellow cancer survivors, refer to the “new normal” on a regular basis. Every time I hear the term, it makes my skin crawl.

The “new normal,” is an oxymoron to me. It’s like boneless ribs, a calculated risk, or alternative facts. By definition a “new” normal isn’t normal. It is, however, a new reality.

Speaking as a cervical adenocarcinoma Stage 2 survivor, here are some of the things that people (both doctors and fellow Cervivors) have deemed as a “new normal” after cervical cancer treatment.

Loss of muscle and strength

Due to chemo, radiation and multiple abdominal surgeries I have little to no core strength any more. I can’t carry the same things that I was able to do prior to cancer (including heavy grocery bags) or do the same cardio that I was able to (I still become winded if I talk and walk upstairs at the same time). Most recently I developed severe lower back pain, which is due to my psoas muscle having been cut 5 times in the past 18 months. I have been told that this is “just a side effect” of the lifesaving treatments and surgeries that I endured over the past two years. I am not ok with this. I want to be able to move the way I did prior to cancer, or at the very least, without pain on a daily basis. This is my new normal? No thank you.

Sexual dysfunction and discomfort

Treatment for cervical cancer often involves radiation or a hysterectomy (or in my case, both). Both of these cause scar tissue which can build up in the vagina and make sex uncomfortable or in some cases impossible. Women are told to use dilators to keep their vaginas open, but quite often sexual discomfort is just deemed as part of your new normal and something that you and your partner need to work around. This reality should never be considered normal.

Bladder/Bowel Issues and Ostomy Bags

Because cervical cancer patients receive radiation and surgery so close to their bowel and bladder, quite often these tissues are damaged beyond repair, and in some cases, cancer spreads to these areas. I have undergone bladder reconstructive surgery, which thankfully was a success, so I did not need to have ostomy supplies, such as an ostomy bag (I have been spared this “new normal” for now. However, I know many women for whom this is not the case.) Unfortunately, the surgery has left me with a smaller and more sensitive bladder. I have to pee all the time…even when I have just gone to the bathroom. Not normal.

Anxiety (over every small pain, out of the ordinary symptom and particularly before scan appointments).

After having cancer, every small twinge of pain, every weird mark on my body, every unexplained symptom becomes possible cancer. Eye Twitching? Retinal Cancer. Headache? Brain Cancer. Bruise I don’t remember getting? Blood Cancer. It is exhausting being this worried all the time. But once your seemingly healthy body receives a diagnosis of cancer, you can’t help but think that your body will betray you again. And now that you know what this betrayal means in terms of treatment, the anxiety becomes even worse. Being afraid of your own body is my new reality. But it is not normal.

As I write this I worry that people will think I am not grateful for the lifesaving treatments I received. I am eternally indebted to my oncologists and radiologists, urologists and surgeons. They did what they had to do to save my life. But I cannot accept my “new normal.”

I think people use the term “new normal” because they think it will make us feel better. It’s as if the fact that many people feel this way or deal with these things makes them ok. But it isn’t ok. We live in a time where the advances of modern medicine are occurring at an astounding rate. We shouldn’t be complacent that these things are just our “new normal.” We can do better. We need to let our practitioners know that these post-cancer issues, while they may be common, are not acceptable and should not be considered normal. These issues are not simply things we need to learn to live with. They are the current reality for many of us, but perhaps if we all collectively stand up and say, “I am not ok with this new normal!” we will be heard and more research, time and money will be spent to make sure that the life of a cancer survivor isn’t so irrevocably changed that their entire sense of what is normal needs to shift. The things I am dealing with now are my current reality, but I refuse to accept that they are, in any way, normal.

Read more about my story here: https://cervivor.org/stories/ana/