Advocates Making a Difference

This week three women showed us all how to be advocates. One woman had her article published in a medical journal and two others shared their stories during a Facebook Live presentation. It makes me so happy to see ovarian cancer advocates highlight their experience in ways not available when I was first diagnosed.

Christine "Cissy" White, an ovarian cancer survivor has participated in a number of #gyncsm chats and is an active ovarian cancer advocate on Twitter and other social media platforms. She was diagnosed in 2019 and wrote the Clinical Trial Treatment Train for the NEJM's Evidence Patient Platform. It was published on August 23, 2022.  https://evidence.nejm.org/doi/10.1056/EVIDpp2200198

The article is an honest look at what it is like participating in a clinical trial. Cissy took part in the ATHENA trial and a trial of REGN4018 alone or in combo with Cemiplimab. She faces decisions many women diagnosed with recurrent ovarian cancer face daily.  Those who conduct and design trials should read and consider experiences like hers when working with patients.

Ovarian cancer survivors and advocates, Kimberly D. Richardson and Kimberly Simmons Emory share their stories and experience with cancer in a Foundation for Women's Cancer Facebook/ Zoom discussion with gynecologic oncologist Dineo Khabele. Dr Khabele joined the #gyncsm community in 2021 to chat about Disparities in Gyn Cancer Diagnosis and Treatment.  Kimberly Richardson, a 10 year survivor,  joined the #gyncsm community in 2020 and shared how to Read a Scientific Poster. I met Kimberly Emory, a 16 year survivor, in 2017 during a Patient Leadership Council meeting in Dallas in 2017. 

You may watch  How to Be Your Best Self-Advocate at https://www.facebook.com/100064784164039/videos/1469632956884193. Take the time to listen to this discussion which includes symptom awareness, communication with your health care provider, genetic testing,  risk, etc.  What can we do raise awareness of ovarian cancer and offer support to women of color?

Thank you Cissy and the "Kim Squared " for everything you do to raise awareness and support women diagnosed with ovarian cancer. 

Dee 

Every Day is a Blessing!

Thinking about Rest

Life has gotten busy the past few weeks and I realized that I have not posted to this blog in way too long.

Another survivor, Christine "Cissy" White, shared a blog post she wrote on LinkedIn using a writing prompt from Laura Davis. I loved Cissy's post. I thought maybe that was just what I need, a prompt to spark my writing.I decided to use the same prompt Cissy used.

 

Rest is not always easy.

At the beginning of each year I look at what advocacy activities I have planned for the year ahead and decide what large projects I would continue with. I ask myself if the activity brings me joy.  I know I sound like Marie Kondo and her advice about getting rid of clutter. For me that process worked well until recently. I started receiving special requests to help with clinical trial design, be a part of an advisory board and  review grants. As a cancer research advocate in what is considered a rare cancer,  I felt compelled to be involved in these opportunities. If I said "No" I would miss out on sharing my story and raising the issues that are important for women with gynecologic cancers. Was I letting myself and those who lost their lives to ovarian cancer down by not participating?  

Since Covid many events, symposiums, presentations were held virtually.The fact that travel costs were non-existent took funding my trips out of the decision making process. This just made things harder since I could take part from home. I knew I couldn't say yes to everything or I would burn out. I needed to look after myself.

Beginning in 2022, I started blocking out weeks at a time for family and friends.  I learned to turn down opportunities. But I did more than that. I decided to look at these opportunities as not opportunities for myself but for others. Every time I turned down an opportunity, I recommended another advocate or survivor who could step into that role. It is important that we advocates support each other. Now I can really rest and know that other patient/survivor voices are being heard.

When I rest... I feel calmer. I have more energy to do the advocacy work I am passionate about and I have time for my family and hobbies. 

Sometimes when I rest, I sketch or paint.

 

Dee

Every Day is a Blessing!