I go by Servivorgirl. Just over 7 years ago I was diagnosed with advanced IIIC ovarian cancer. I recurred in January of 2012 and have recently rejoiced in N.E.D. via C.T. scan. My numbers have risen slightly but I worry not. I have chronic serious side effects from long term treatment and have adapted to a new normal. I remain on maintenance Avastin.
I pray daily. My praise is to God for His love keeps me whole. Amen.
CDC Symptom Diary Card
Saturday, September 29, 2012
Round Table with WEGO Health: our interview
It was such a pleasure and honor to speak with two other teal sisters and discuss increasing the awareness of ovarian cancer via social media. WEGO Health is an organization that works to empower health activists. Thank you!
We had an incredible Round table last Friday in honor of Ovarian Cancer Awareness Month. While other cancers seem to get the spotlight – the symptoms of ovarian cancer are often mistaken for other things and misdiagnosis is common. As a woman I found the information absolutely invaluable. I’m so glad we got to know these three Health Activists – they are doing amazing things for the Ovarian Cancer and women’s health communities. –Amanda
Roundtable Recap: Ovarian Cancer
by Marissa Herman
WEGO Health likes to highlight (and learn) about health conditions that aren’t necessarily as well known as others. We love to bring awareness and information to others who may be able to use the info to help themselves or those in their community. In last Friday’s roundtable we focused on Ovarian Cancer. We found three lovely women who are also trying to spread the word about Ovarian cancer,Carolyn(@karenecpaceocf), Connie (@conniescheel), and Denise (@servivorgirl). These three amazing women shared their stories and their helpful advice about early detection, advocating for yourself, and facts about Ovarian Cancer.
Connecting to the online community is a great way to meet others that share your passion for Health Activism and let you know you are not alone on this journey. Social media has become a huge tool in connecting with others in your community.
How has social media and the online community changed your personal health journey?
Carolyn: By just making me wiser. I found out about the CA 125 blood test online. Going online has helped me be wiser about the things I need to watch out for.
Connie: I thought it was important that other people knew that at 32 you can be diagnosed with Ovarian Cancer and here’s what it’s like to go through it. I wanted to teach people this is how you cope with it and it isn’t a death sentence. Social media has just been the link to the world. I mean that’s the loudest voice available to us right now. Facebook, twitter, with social media you can reach a lot of people and through them it starts a chain reaction.
Denise: For me, I started it originally because I needed someone to talk to, I know that sounds kind of strange. I started seeing, because I became a member of Facebook and Twitter, I started getting more and more support. I started seeing that this is a really valuable resource to reach other women, and men, people and health care providers to maybe hear my story. Maybe it will change even one doctor, yes one medical provider learn a little bit more, pay a little more attention, anything to reach more people in his or her office, anything to reach more people so it is incredibly valuable.
Unfortunately, behind every lesser known illness there are bound to be myths and misconceptions.
Carolyn : One of the main myths is that there is a certain age that get Ovarian Cancer and that is certainly not true. Like a lot of older people get it or mostly people that get Ovarian Cancer who have never had children, which is a myth.
Connie: A myth that touched me very personally was your weight. I think there’s a misconception that if you’re healthy and eat well and you’re thin, then you are immune to ovarian cancer, or all cancer. And that’s not true. Just like if you drink and smoke and do all those things that you will get cancer. There are no guarantees either way. I also think women more than men have been trained to just go with whatever your doctors say. You have to be your own best advocate, you have to be your own loudest voice because no one will fight for you like you will.
Denise: I would definitely have to agree about the age and health for sure, because I was told I was too young to have ovarian cancer 3 times. I don’t think we have enough about ovarian cancer to say what is and what’s not true about ovarian cancer. When it comes to ovarian cancer there is just so much we don’t know, the best thing we can do is know our bodies and listen to our bodies and read about it.
Not many people know about Ovarian Cancer. What would you like to share with other Health Activists about it?
Carolyn: It’s affecting more and more women now. I have never heard of Ovarian Cancer when my sister was diagnosed. And how many women are like me? There are a lot of people that have no idea about Ovarian Cancer.
Connie: I think the most important thing is that ovarian cancer looks so much like so many other disease and I think people aren’t recognizing it as Ovarian Cancer. And we don’t want to scare people, but we want to encourage women to go to the doctor and rule out that they Ovarian Cancer. It may or may not be but people should rule it out as soon as possible.
Denise: Join other kinds of forums because one of the things is that our circle is very passionate about ovarian cancer because of how it sneaks up on us. I think that if Activists reach out in other communities and become a part of the group they can learn about Ovarian Cancer in that way. And I would encourage people to share each other’s organizations, promote each other, that’s important.
Ways other Health Activists help the Ovarian Cancer community
Carolyn: Use the internet. There are a lot of people out there, a lot of organizations including the one’s we are part of that are trying to be an advocate for Ovarian Cancer. So, definitely use the internet and volunteer. There are a number of organizations all around, Washington, Florida, Tennessee, that they can be a part of. Put the word out there, they should know the symptoms of Ovarian Cancers.
Connie: I agree with Carolyn, getting online, going to your local support groups and cancer centers and asking “what can I do?” There’s a great opportunity if you have Facebook, Twitter, to just start posting things and sharing things from websites. There is tons of great information available that we need to get circulating on an individual level.
Denise: Definitely reaching out on the internet and just searching for national and local organizations. I also like to reach out personally with the local organizations the one on one. Find your comfort zone; there are many ways you can help, many, many ways.
Programs, tools, information, or resources would you like to see created especially for those dealing with Ovarian Cancer
Carolyn: I am not a survivor but I am a caregiver. There was nothing for caregivers of Ovarian Cancer. If there was more for the caregivers and tools for the caregivers, that would be helpful. Something that could show this is what you do for this and this is what you can do for that.
Connie: I agree, more support for the caregivers. I think, in a way, Ovarian Cancer patients and caregivers feel a little ostracized. I would like to see a change. An app to help organize your notes from your doctor and prescriptions would be nice. The biggest thing for me is a way to get complementary therapies to people. It should be more known for woman that there are other ways to heal and to cope.
Denise: I would like to re-emphasize that feeling of being ostracized. I needed resources, I needed help, I needed all sorts of things because my life was turned upside down. An education series, a video series of basic gynecological health to talk about what if it’s Ovarian Cancer and what are questions to ask when you get your surgery. Such a simple, basic thing, but on a video you see a face, you see a real person talking about it. It would be easier to absorb it because it’s so scary.
What tips or advice do you have for someone who is just getting started in advocating and has decided to write a blog about their own fitness or healthy living journey?
Carolyn: Know their bodies and know if something different is going on in their bodies.
Connie: Listen to your bodies, pay attention to yourself, value yourself, value your health, and find your peace.
Denise: To learn more about your family history and maybe keep a journal about how your cycles are an things like that. I think we’re taught to dismiss stuff, so maybe keep a journal of unusual things.
I would like to thank Carolyn, Connie, and Denise for talking with us. It was really interesting to learn all of the stigmas and gain new knowledge about this growing illness. They each shared valuable insight and great tips. Even though they each have a different story, they all share the need to spread the word about Ovarian Cancer.