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.
Helen, you are truly an inspiration. You give me hope for my own future.
Helen you are such a warm and loving person! I am so glad I have gotten the opportunity to spend some time with you. So much compassion in such a small package!!
Love to you,Marilyn
Shiver me timbers, them’s some great intiamrfoon.
We’ve been getting a slew of spam comments today, that have been getting past our Akismet spam filter. This one wins some kind of a prize for stupidity, though, so I’m leaving it here … but I removed its URL so it gets no spam points.
Helen ROCKS. She is such an inspiration to all OvCa patients, especially those just finding out about recurrance who think the world has ended. Helen is a bright beacon, loving presence, and wise woman who has brought so much to so many. Helen truly stands for hope.
Thank you, dear Warrior Woman.
Thanks for the time and great example you have shared with me!
Helen: You are an inspiration to all of us teal sisters!!! Great article!! I strive to get to 25+ NED years….I am at 12 now!! It has been my pleasure to spend time with you at different OC events.
I do hope we meet sometime. You have inspired me with your story, as you have to so many other women. Thank you.
Thank you Helen for continuing to help and inspire others with ‘hope’. We must have it (HOPE) going into the battle to truly believe that we can, like you, win.
“Man can live about forty days without food,
About three days without water,
About eight minutes without air,
But only one second without hope.”
Thank you Janice. I love your quote.
Helen, I am contacting you on behalf of my friend, who may be facing a recurrence of cancer 4 yrs after being diagnosed with stage 3 ovarian cancer.She would greatly benefit from being able to speak with you preferably on the phone, or though email. She is not on facebook. Would you consider speaking with her? She is patient of Dr. Lurain at Northwestern Hospital in Chicago.
My dear Helen, you are a role model for so many women. Thank you for continuing to share your story, your hope and encouragement. You give inspiration to all the lives you touch. Meeting you almost 6 years ago has made a huge impact on my dealing with my diagnosis and survival. And, your outreach to others was my inspiration to do presentations about ovarian cancer to educate both men and women. Thank you for being the wonderful woman you are.
You are so inspiring!!! You gave my daughter and me so much hope when we really needed it. You are such a blessing!!! Thank you!!!
Helen, you have written just like I feel/felt. Thanks for putting that into words from the heart. Although I am only into the battle almost 4 years/2 chemo’s, I too celebrate every birthday with special meaning of one more year…..hope I can write about my journey one day and inspire others…..thank you! hugs
Helen, I’m reading through some old and new posts on “inspire” and I find you posting so much. You don’t have to, but yet you do. I want to thank you for encouraging so many of us women with Ovarian cancer, who need someone to look up to and smile-thanks,Helen, for being you—-joanne xxx
Thank you for your kind note. It makes me feel so good to give hope to others. All of our lives were turned upside down over night with this diagnosis. I don’t see how anyone could put it behind them. The one good thing about getting ovarian cancer has been that I have met the most wonderful women. I really think it is only the nicest people who get this disease.
Again, thank you.
Online support communities are becoming as necessary in the treatment and healing process of patients as the doctors and treatment plans themselves. Almost two years ago a dear friend learned she was suffering from a rare uterine condition. Her husband and her had just suffered the loss of their little girl who was born almost 3 months early and did not survive because of this condition. She credits an online forum developed from other mothers who had this rare uterine condition which had resulted in the loss of their infant children, with her ability to make it through.
She actually referred to them as her cyber sisters as well. Despite the many obstacles life tends to throw in our way; it is empowering to see women of all ages come together in e-patient forums to offer the advice, guidance and support that the medical world is often not able to offer.
This is an awesome story. You have given hope to so many others. I pray that this is what I can do as well for others. You inspire me!