Guest blogger Helen Palmquist is a member of the Ovarian Cancer National Alliance support community, hosted by Inspire. She lives in suburban Chicago.
I was diagnosed with ovarian cancer at age 41, in the pre-Web days of 1987. From my hospital bed after my first surgery, I phoned two people whom I had heard were diagnosed with ovarian cancer, and were doing well. I recall so clearly that those two phone calls were what I needed to know — that if they could pull through, then I could too.
Nearly 25 years later, as an active member of an online support community, I’m happy to have become a virtual “voice on the end of the phone” for many women newly diagnosed with ovarian cancer. It gives me so much pleasure to help take some worries away, and give hope, sometimes just by writing the words, “If I could do it, you can too.” I remember what those words meant to me.
I went through a lot but everything I went through was worth it because I have been well for years. When I had to have second-look surgery, I thought I would need a psychiatrist if they told me I needed more treatment. I recall that those first six months were so hard. When doctors said I needed another six months of treatment, my Mom told me, “The treatment worked well before, you just need some more to get rid of what the past six months didn’t accomplish.” That was all I needed to hear to get going again.
In the mid-1990s I came across a book, No Time To Die, by the editor of a fashion magazine who had ovarian cancer. Through that book I learned about Cindy Melancon’s newsletter, Conversations, which in those days came by snail mail once a month. And through that newsletter I found out about the Association of Cancer Online Resources (ACOR) ovarian listserv. That was when I started reaching out online to give others encouragement — six years after I completed treatment.
I was not computer-savvy then. I got my first computer towards the end of 1997 and I never took any instruction. I never went online looking for ovarian cancer information. When I first went on the ovarian ACOR listserv, the terminology was foreign to me. I thought some of the online survivors must have gone to medical school. They were very knowledgeable.
And now, I’m a member of the Ovarian Cancer National Alliance Support Community on Inspire, an online support group, and I attend the Ovarian Cancer National Alliance annual conference. In the online group, I fall back on my own experience. We are all like sisters. No one knows what it is like to go through this disease better than someone who is going or has gone through it.
Over the years I have had the chance to meet in person many of the ACOR ovarian women and, more recently, members of the OCNA/Inspire community. Even though we come from different backgrounds and different locations, we love each other like sisters. I am so rewarded and I never feel that the time I devote to the online communities is a burden. I was a primary grade teacher before I had children. I became a full-time mother, and once my boys grew up, my mission has been to give hope to my fellow ovarian sisters.
I can never forget those years when I thought I would die, especially in the beginning when I was so sick with nausea and vomiting. Ever since my first birthday after my diagnosis, I’ve wished for another birthday when I blow out the candles on the cake.
That first year of illness, when I could barely make it to my Monday morning bowling league, I would tell myself if I get the pins down I will live and if I don’t I will die. It was a game I played with myself thinking I might get a better score if I tell myself that. It’s not something I can block from my memory and I am very happy to be able to share my success of surviving with others. Through online communities, I can share my own message of hope with so many others.