Patient Advocacy

 According to the National Patient Advocacy Foundation (https://www.npaf.org), patient advocacy can involve an individual or group of people.  Patient advocates believe that health care should be equitable for everyone.  They advocate for patients, survivors, and caregivers.  They can be a powerful force for change.

A couple of months ago, the Senior Director of Patient Advocacy at Genmab had contacted CEO Shelley Fuld Nasso, from the National Coalition for Cancer Survivorship (https://canceradvocacy.org) inquiring about endometrial cancer survivors for Genmab's Patient Advocacy Council.  Surprisingly (and I use that word because I still can't believe that she recommended me), I was mentioned as a possible candidate for their Patient Advocacy Council.  After sharing my cancer experience with the senior director, he offered me a spot on their council.  

Five years ago, I never would have pictured myself participating in these opportunities to educate and help other people going through a gynecologic cancer.  I am a little outside of my comfort zone, but I am very excited to share what is pertinent to cancer patient care, as well as learn about clinical trials and what could be possible for the future in survivorship.

Support Groups and Finding the Right Fit

In my last blog post, I had talked a lot about research studies being done on gynecologic cancers. Be sure to click on the link below if you know someone who has recently been diagnosed with a gynecological cancer. 

 https://www.blogger.com/blog/post/edit/7019961623740469661/251278343426145588

Support groups are crucial when going through cancer. According to https://www.cancer.net/coping-with-cancer/finding-social-support-and-information/support-groups support groups reduce stress. 

Just like trying anything new, you need to find the support group that is the best fit.  Are you looking for in person or online? Meeting daily or weekly? Attend with a caregiver or by yourself?  Hear me out...I know that support groups are not for everyone!  I am pro support groups because I enjoy interacting with people.  It is fair to say that I NEEDED to meet other women going through gynecologic cancer.  I needed to "see" proof that other women lived through treatment and continued to live long healthy lives.  Here is how I found mine.

My first support group that I tried was a Writers Group for those going through cancer. I figured that I enjoy writing, so why not? I was very nervous, but as introductions were made, I learned that all of the patients in this group were (or had gone through) breast cancer patients/survivors.  I could partially relate to some of their struggles, but left feeling discouraged.  I decided to give it another try the following week. 

I joined the group in a cozy chair, ready to put my feelings to paper when I heard an older woman animatedly flailing her arms about and sharing with us about how excited she was to babysit her grandkids.  It hit me..I didn't fit in with this particular group.  I wanted to live long enough to see my own kids get to middle school, much less babysit grandkids. 

The meeting concluded about an hour later.  I got into my car and cried most of the 20 minute drive home. I felt like I didn't fit in anywhere. I got pissed.  I was only 40.  What the fuck? Why was I having to deal with cancer at 40?  Why me? I spent the next day online.  I searched for support groups/gynecological/young women.  And thankfully, I found what I was looking for on Facebook. The Young Women with Endometrial/Uterine Cancer Support Group saved me!  I felt like I belonged.  These women GOT me! They understood my hysterectomy, my chemo meds, hot flashes, my fear, my lack of libido...everything. I fit.  I had found my Peach Sisters.