Local survivor and top Komen fundraiser, Jan Middleton attended the C4YW 2011, and gives us an insight into her personal journey, and the hope and empowerment that this conference offers:
As a 3 year breast cancer survivor I always tell someone newly diagnosed that we all must take this journey in a way that works for us. We cannot let others tell us how we should feel or how we should communicate. We must find our own way to mourn the many losses such as our breasts, our hair, our ovaries or our old lives. Some women want to learn as much from the internet as possible and others want to only hear medical information from their doctors. Some of us want private time to reflect while others prefer to be surrounded by people- the people we love, other survivors/support groups.
When I was diagnosed in September of 2007, I was not private about my diagnosis but I could not handle being around others with cancer. I am not sure why that was. I was overwhelmed, terrified and felt like I could not be with someone that was or had gone through the horrible times that I was now experiencing. One night, after spending way too many hours on the internet with Dr. Google (I don’t recommend this to anyone) I came across a website that was full of information dedicated to young women and breast cancer. Getting breast cancer before menopause is not a good thing…this is the one time in your life that being “young” doesn’t necessarily play in your favor. Young Survival Coalition focuses on critical issues unique to young women who are diagnosed with breast cancer. They provide resources, connections and outreach so women feel supported, empowered and hopeful.
The area of the website that got most of my attention was the online support group. There were women from all over the world that were just like me….they were the same age as me or they had young children like me or they were worried about managing work and treatment or they were concerned about relationship issues. I would spend hours reading the different online discussions and also the “signatures” of each participant. Within most women’s signatures they would list their diagnosis, their treatment plans, surgeries, recurrences, etc. I followed this site for weeks before I finally found the courage to become a member and post. As soon as I did I received welcome messages from many women….welcoming me to the club that no one wants to join. From there I joined a treatment group. This is a group of women all starting chemo in the same month. I went from doing this terrifying journey alone to having several girls sharing their experiences as they took the same chemotherapy drugs, lost their hair, got sick and tried their best to hang on to some type of normalcy in their lives. As a treatment group we also had the support from hundreds of other members that were like big sisters to us. They would follow our posts and “drop in” to offer advice on a variety of issues from nausea to how to talk to your children about losing your hair. I had found my safe place! These women became my sisters and they got me through the darkest days of my life. They were there for me in the middle of the night when I could not sleep due to the fear that I may not live to see my children graduate from high school and they were there to celebrate with me when I got my new foobs (fake boobs)!
I was blessed because I had my friends and family that were so supportive of me…they helped with the kids, brought us meals and offered us constant support. Along with these people from my “real world” I now had hundreds of new sisters that were there to help me and as I moved through my treatment I was able to begin to help others from what I had learned. I would have never been able to get this far without all of these caring people.
I just returned from my third Conference for Young Women affected by Breast Cancer. Sessions offered over the weekend cover a variety of topics such as fear of recurrence, treatment updates, reconstruction options, metastatic disease, etc. There are also sessions designed specifically for care providers and family. During the weekend there are several opportunities for networking. Break areas are designated by newly diagnosed, long term survivor, diagnosed while pregnant, triple negative disease, etc. During breaks participants can meet with other survivors that they have something in common with. Since many women attend the conference alone this is a great way to meet someone new. It is wonderful to watch new friendships blossom and develop over the weekend.
One of my favorite parts of the conference is the exhibitor area. In this room you will find vendors selling all types of pink ribbon clothing and items, mastectomy swimwear, lymphedema sleeves, headcovers, etc. Many of the drug companies that work with breast cancer have reps at the conference. Part of my treatment plan included the drug Herceptin which I believe is the miracle drug for HER2 + breast cancer. I will never forget meeting the Genomic Health rep at the Dallas conference in 2008. He was able to answer so many questions for me and had all types of charts/graphs to show me on HER2+ breast cancer. Massages and make up sessions are offered for free and we all love having our picture taken with Dusty Showers, (pictured, right with Jan) of the 2nd Basemen, and the Good Health Fairy (beyondboobsinc.org)!
On Saturday evening there is a dessert social with a DJ and dancing, this is when everyone really comes together to relax and have fun. I can tell you that there is nothing more moving than standing in the middle of hundreds of survivors on a dance floor and seeing their smiling faces as they sing “I will survive”! For just a moment all worries are gone, the aches and pains seem to subside, the fear seems to go away as you feel the connection to these incredible women that surround you, we are brought together by tragedy yet we share a bond that only we can comprehend. The event ends concludes on Sunday and as the participants begin to depart there are many hugs and lots of tears. Women that attend this event leave with a new sense of courage and empowerment to take control of their lives and not let cancer take control of them. These women leave with an inner peace, they have been surrounded by women that really “get it”. They leave with new friendships and
special memories created by reconnecting to old friends.
I want to thank Susan G. Komen for the Cure for being a major sponsor for the Conference for Young Women affected by breast cancer. An event like this would not be possible without Komen’s support and I appreciate the fact that Komen recognizes the unique needs of women that are diagnosed prior to menopause. We must continue to raise awareness and support the unique needs of young women that are diagnosed with breast cancer. As I continue my cancer journey as a survivor my hope is that my daughter and all young girls will be able to grow up in a world without breast cancer.