Welcome to LMS Lifeline, a new community blog for readers and writers, sponsored by Leiomyosarcoma Support and Direct Research Foundation.
When I was diagnosed with leiomyosarcoma in 2010, I had a seeming advantage over many others with the disease. Unlike most people who have never even heard of the disease, I actually knew someone who had LMS. He and I grew up in the same community. He graduated a few years ahead of me from the same high school, and I had known him since my teen years. I had recently read a newspaper article about a fundraiser the school where he taught had for him.
Hopeful for a connection, I reached out to him. But he was dying, and he did not have energy to answer my questions. When he died, I again felt like I was truly alone. And l was sure death was just waiting for me, too.
One of the very real side effects for both patients and caregivers with all cancers, but especially rare cancers, is loneliness. The feeling there is no one who has been where we are, who understands our struggles, who knows what we are feeling. I remember picking up the phone and holding it in my hand. If only…
Then along came ACOR (an online Email resource) and later the LMSDR Facebook page. I had found community. A growing, sometimes flawed, but always available community. One which gave me much hope. There are survivors out there!
But not everyone is on, or wants to be on, Facebook. And it has its flaws — It is a mere snapshot, a brief connection. We don’t really get to know each other. Our exchanges are brief, and the information is condensed. We are a community of acquaintances.
Nothing beats loneliness like getting to really know each other and making personal connections.
I was recently able to meet with 26 other LMS survivors and/or caregivers in Atlanta at the Sarcoma Exchange. It only cemented my belief in the power of relationships and their ability to deliver healing and hope. But that is a once a year opportunity for most of us, at best. In between, the isolation grows again.
This is where our new feature, LMS Lifeline comes in. LMS Lifeline is intended to be an ongoing community for those with LMS and those who love them. We want to inspire and be inspired by you, to be encouragement and light as we walk together the path we did not choose and to allow you to encourage others.
We envision LMS Lifeline will also be a resource for “all things” LMS.
We will provide links to articles of interest. Such as ones on health for mind and body, or advice on how to advocate for yourself or a loved one. We hope to run occasional articles from sarcoma doctors and others who treat us. We will also share information on LMS research from those who receive funding from the Leiomyosarcoma Support and Direct Research Foundation.
But mostly, we want to share your stories of survival and triumph.
What motivates you? Drives you? What have you accomplished in spite (or maybe because of) LMS? How did you get to where you are today? What “secrets” to living with LMS can you share? Where are you, what are you doing and how are you doing?
This is your opportunity to throw a lifeline to others with LMS. To be an inspiration. To be a leader in our community.
As the editor of this new blog (thank you Sharon!), I am excited to share with you, but more excited to hear from you. Please Email me, email@example.com with your article (include pictures whenever possible). I will also interview you for an article if you would prefer to not write it yourself.
If you do not wish to contribute with your own story (we fully understand), we hope you will help guide us by suggesting what YOU would like to read. Send me an Email with your ideas or links to features or news stories you believe should be shared.
We are planning to regularly add blog entries, to keep it fresh and exciting and worth visiting regularly. Like having coffee with a friend (alas, without the coffee). But we can’t do that without your presence and your voice.
Thanks for stopping by. Welcome to LMS Lifeline. We hope you will return often!
Vicki Strong, LMSDR Secretary, August 31, 2018