Mets: Sharing Ideas & Stories
Hearing the words "you have cancer" is devastating. Hearing the words "your cancer has returned" or "your cancer has already spread", is beyond imaginable to most. It is what every woman initially diagnosed with breast cancer fears. Once diagnosed with metastatic disease, you become part of a whole new group. A group that is often feared, ignored and marginalized. Women living with metastatic disease are no longer considered Breast Cancer "Survivors" as their treatment will go on and on. As a result, there is no "Pink" community of support behind them, little awareness of advanced disease, and fear. Not only do you contend with your own fear of having metastatic cancer, but also the fear of your family, friends, neighbors and other women with breast cancer. It's a lonely and scary place to be.
SHARE offers great services for women with Metastatic Breast Cancer. We have support groups, educational programming as well as Hotline and Peer to Peer telephone support. SHARE also enables women to attend informational conferences around the world dealing with metastatic topics. For a small organization, this is quite an impressive listing. Is it enough however? Probably not, but it's a great start!
This is where I come in. I've recently come to SHARE as the Metastatic Program Coordinator. I had early stage breast cancer many years ago and have been working with the Young Survival Coalition for the last decade. I've been working the past several weeks getting up to speed on metastatic issues, talking with current volunteers and staff and reading mets blogs and boards, research papers and websites trying to determine what services not currently offered by SHARE are needed or wanted?
To get the ball rolling, we are developing a monthly newsletter that will contain information pertinent to women living with metastatic breast cancer and their family and friends.
Studies indicate the main things those living with metastatic cancer want is information on current and new treatment options, symptom and side effect management, clinical trial information, support and practical resources. This information as it is available will be in the newsletter. In addition, SHARE's calendar of events will be listed or linked to as well as articles and blog entries, videos, announcements and events. If you are interested in writing an article or blog entry, or willing to tell your story on camera, please contact me. I welcome your input.
I'd like your suggestions for additional programs that would benefit you. Feel free to contact me directly with thoughts and ideas.
My hope is that together we can provide one another with information, support and resources available to help us cope with metastatic breast cancer.
Christine Benjamin, LCSW
Metastatic Program Coordinator
Cbenjamin@sharecancersupport.org
212-937-5586
Posted September 13, 2011.
« Next Post | » Previous Post