For many cancer patients and care partners today, the first place they turn for information—and some initial support upon diagnosis—is the Internet. While we are always thrilled when folks find our website, Facebook has globally become a station on the digital highway where people congregate, share feelings, experiences and information in a very “real-time” way, and that is very important when faced with a scary and—many times—unknown future.
We know this all too well since Andrew has been living with chronic lymphocytic leukemia (CLL) since 1996 and a second cancer, myelofibrosis, since 2011. We’ve both joined various Facebook groups in order to not feel alone and to contribute comments to help others.
Understanding this strength of Facebook, we decided to collaborate with another organization dedicated to patient empowerment, Liquid Grids, to launch The Cancer Connection page on Facebook. We created this page for a few reasons:
o To provide a safe and monitored space for our existing Patient Power community members to easily converse with each other about issues that matter to them;
o To encourage patients and care partners who have not yet discovered the global Patient Power community and website to begin that relationship on Facebook, and interact with other people that have similar concerns;
- To raise awareness of the deep and expansive information we have on the Patient Power website and to highlight those resources as they are appropriate in conversations on The Cancer Connection page;
- To let every cancer patient and family member know they are not alone.
Some of you may be familiar with the various Facebook pages we have curated for a while. Some are disease-specific and those will eventually be discontinued as we work to make The Cancer Connection a vibrant conversation spot for all who are on the cancer journey—and we will be able to support creating disease-specific dialogue there if it is needed.
The Patient Power Facebook page will continue to have postings about new content that you will find on our Patient Power website, and we will share news about patient advocacy, special events and other information specific to Patient Power as an organization.
Cancer is definitely a “family affair.” I’ve known that since 1996 when I was first diagnosed. I understand Esther, our three grown children, and other close relatives have questions and concerns. But none of us is alone and people have gone before us. That’s where The Cancer Connection comes in as a place for issues, feelings and empowering conversation about the many aspects of facing cancer and how it affects the lives in a whole family.
As a care partner, I am looking forward to hearing more from others who have supported loved ones through cancer treatment as well as survivorship. I find that sharing experiences, information and mutual support really helps me through the ups and downs of living with some uncertainty about the future that couples who have not dealt with cancer do not have to think about daily.
We’d love you to join The Cancer Connection community. This is a very new venture, and already there are wonderful insights and information nuggets being shared among those who have “liked” and “followed” the conversations happening. We’d also welcome your feedback—you can do that right on The Cancer Community page as a post. We have a great team to moderate and respond if you have questions, and both Andrew and I are there daily to be part of the growing support we can give each other.
It takes a village! Wishing you and yours good health,
Andrew and Esther Schorr