Diane Paul: Ovarian Cancer Advocate

diane_paul_ovarian_cancer_advocate 40_for_40

When and how did you get involved with SHARE?

I heard about SHARE in August 1993, when I was in the hospital after having surgery for ovarian cancer. I didn't contact SHARE until October, when I'd had about half of my chemo treatments. I was growing despondent because in 1993, nobody survived ovarian cancer for more than a year or two, and I had been trying to find people who had had a similar experience to mine.

At that point, I didn't want to go back to the hospital and continue treatment. Finally, I called SHARE. There was one woman staffing the ovarian hotline: Joan Derwin. She was three years out from her treatment; that was a long time! After talking to her for an hour and a half, I decided to continue with my treatment. Now I always tell her that she saved my life. There were no support groups anywhere in the country except at SHARE. There was no Internet. There was just Joan Derwin on the other end of the phone line.

What have you done for SHARE?

A couple of years after my treatment, in July 1996, I was doing well. But I was terrified every time I had to see a doctor for a check-in; even though I was cancer free, my life was still being terribly affected. One of the reasons I was panicking was that I had been diagnosed 3 months after my older daughter got married, and now my younger daughter was getting married in November. I had a feeling history was going to repeat itself and my cancer would return.

I called SHARE again, and at that point they had a support group for ovarian cancer. On the first night I went, I explained that I felt I was constantly waiting for the other shoe to drop. I said I almost wanted it to happen just so I could get it over with. Some of the women practically screamed at me that I needed to get past that. So I went to counseling, worked through my anxiety over it, managed to get a grip on it. From there, I got involved in the SHARE advocacy committee, because I had two daughters and was very concerned about testing. Eventually I worked the hotlines on the weekends for about 5 years. I worked with many different people, and then became very active with OCNA when it was formed.

How has SHARE helped you?

I wouldn't be alive without SHARE!

What is your 40th anniversary wish for SHARE?

I wish that ovarian cancer would get cured. We still lose so many women, and it's very discouraging. At the OCNA Conference in 2013, a young woman named Jessica Safran overheard my name being mentioned and knew instantly who I was; she had played with my daughters when they were toddlers. We reconnected at the conference, and I learned she had been diagnosed with ovarian cancer. I was heartbroken, and I was mad, because I realized a whole new generation of women are facing this disease. It's going on too long with no screening, no cure, no really effective treatments. Since the conference, Jessica and I have gotten together a few times. She's become a big advocate; she got involved with SHARE, and she's been involved with Survivors Teaching Students. I've passed the mantle to her, and my wish for her is that she gets to do advocacy for the next twenty years.

Diane is pictured with Jessica (above right).

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