Along the way

Along the way in my cancer journey since 2002, I have had the privilege of meeting more than a thousand other leiomyosarcoma patients and loved ones, in person and in our LMSDR Facebook Group. Some have been just a name to me. Others, I have followed their stories online and smiled at their photos over the years. Then there were the ones who I knew personally. I stayed at their homes, shared meals, met their families and hung out with them with at conferences.  A priceless few became best friends.

No matter how well I knew someone in our LMSDR Facebook Group, when they pass, my heart sinks and I shed a tear. It shakes my foundation of hope and faith that we will find the right treatments for each of us. I feel for their families, and mourn my own loss of a fellow LMS friend.

I offer these suggestions, to help you keep moving forward on this journey, even when some of our friends don’t.

Honoring Your Grief

  • Take time to be sad. It’s impossible to brush our feelings of grief away without acknowledging them. Find time to feel what you feel.
  • Embrace all types of feelings. Loss can bring a roller coaster of numbness, fear, anger and much love. They are all a normal part of grief.
  • Express your loss. Rituals help. Some of us light a candle, say a prayer, write a post, create art, buy flowers, or go for a long walk.
  • Get support from others. Just sharing and reading each other’s loving thoughts helps us not feel alone. We heal easier when we can be with others who understand.

Along the way

Healing the Grief

  • Incorporate lessons. I like to think about each unique individual and what I learned or gained from them. I now send cards randomly, like my dear friend Suzanne did. The exuberance of Daryl’s appreciation for the group still rings in my ears, and reminds me to tell people how much I appreciate them. I try to put some humor in my day like Delia did and be bold like Dr. Dee. I have learned so many things from others that have enriched who I am.
  • Live life fully in their honor. This is my personal way to remember to not get stuck but go forward when I lose someone. In honor of the person, I go do something that makes me feel alive! I go out dancing, sing with my favorite album, have a warm and enriching conversation with a girlfriend, I treat myself to a gourmet meal, I sit outside in the sunshine, walk in nature… you get the picture. I do something to declare that I appreciate being alive.
  • Count your blessings every day. Start this discipline immediately and practice, practice, practice. Get a journal and write down each and every thing you are grateful for daily. Add to it, “What went well today?” Your life will change, I guarantee it.
  • Help others. I always tell people, “When you help others, you put your own problems in your back pocket.” Focus on serving others and you’ll be amazed at how much better feel. Volunteer, visit someone who is sick, clean out your garage and give the money to charity, or anything that uses a bit of yourself to make the world a better place.
  • Advocate for and funding research. This is my personal antidote for turning my despair and angst into positive action. How can we help save lives…including our own? The answer is with researchers. They hold the tools to gain new understanding of our rare cancer and find new treatments which might work. How can we help the researchers? We can donate our histories to the LMSDR Patient Registry. We can donate LMS tissue. We can hold fundraisers. Each one of us can make a monetary donation, big or small, in the person’s honor, on their Tribute Page or just the LMSDR general research fund.

More help on grief and loss.

So now you have some of my suggestions on how to cope when we lose a fellow LMS member and friend. Please email and share with me your own ways of how you grieve and heal from loss.  I will add them to this blog to help us all!


along the way

Sharon Anderson MSW
uLMS survivor since 1/2002
President, Leiomyosarcoma Support & Direct Research Foundation