Spotlight on the Stop NHL Message Board

It was some time in the Fall of 2000 that I was first introduced to the Stop NLH Message Board. Little did I know that through a series of events that I would meet a group of people who would become a family to me and help guide and encourage me through the most difficult journey of my life.

After being diagnosed with Lymphoma I began to seek out local support groups. Sadly, each one was filled with older people and meet at a time when I had no one to watch my 4 month old and 3 year old. One facilitator said she’d gladly welcome me but that I may not find anyone to relate to because of my age. I was discouraged at the thought of facing this monster alone. I really wasn’t alone because I had a great support team in my husband, children, family and friends. But they didn’t have cancer so they couldn’t understand how I truly felt.

I had a good friend, Julia, post my story on a parenting website she frequented. From there I got an e-mail from Jill. Jill’s husband, Dave, had recently been diagnosed with Lymphoma and she wanted to direct me to a message board that was dedicated to the needs of patients, caregivers and families dealing with Non-Hodgkin’s Lymphoma (NHL). I was deeply touched by Julia for taking the time to post my story and Jill for reaching out to a total stranger. But because of their compassion for me I was directed to a place where I no longer felt alone.

The Stop NHL Message Board was created by a wonderful women, Trudi. Here is what  the dedication to Trudi says from the message board, “Trudi’s courage and conviction to help her husband Bruce battle his NHL because a source of will and determination to many battling this disease and to those that care for, and love them. She founded this board some years after Bruce was diagnosed in 1986. Ironically, in December 2006 Trudi was diagnosed with Non-Small Cell Lung Cancer. Sadly, after a short but courageous battle of her own, we lost Trudi on April 16, 2007. Bruce continues to do well. It was Trudi’s courage and conviction that made this board persevere and, in her memory, the reason you will always find a shoulder to lean on.”

I found the support I needed. I found the love and security I needed. I found answers to the tough questions I was struggling with. I found a place where I could go to any time of the day and have someone reach out to me through my posts.

Trudi was truly and inspiration. Her love and dedication to Bruce was amazing and encouraging. She was the Mama that wrapped her arms around each one of us. Loosing her took the wind out of us all and has left ripples through the message board that has not fully recovered from her loss.

As I read the dedication again I am saddened by the last sentence, “It was Trudi’s courage and conviction that made this board persevere and, in her memory, the reason you will always find a shoulder to lean on.” I’m saddened by this because the message board is often silent. Newbies come seeking support and aren’t getting the mega support that I received. Many of the old timers have been silent for whatever reason. I often think, “What would Trudi do?” I think Trudi would double her efforts to reach out through the web to people all over the world.

I think of why I haven’t been active like I use to be. The answer: It has been 10 years since I was diagnosed and treated. In all that time I have been blessed not to have to deal with that particular beast again. In some ways I feel guilty because of it. I feel like I don’t have anything to give to someone going through the thick of it when I’ve enjoyed every bit of my cancer/treatment free life. I still go through the stresses that us survivors face – the unknown of relapse, secondary cancers and the constant reminders through yearly oncology appointments that it’s never over.

After all these years I finally decided to change my Lymphoma website into a blog. It’s not perfect and not as nice as what my wonderful husband created for me many years ago. But this way I can be more involved in updating it and maybe posting how I feel as a survivor.

What I really want to do is reach out to those who need the support that I needed when I was the newbie freaked out of my mind and wanting support. If you or anyone you know is suffering from Non-Hodgkin’s Lymphoma I have a place for you. Drop by the Stop NHL Message Board and post your story. As for the rest of oldies . . . . stop by the message board more often. When you see a Newbie seeking support respond and let them know they aren’t alone.

Krista Jones 4.29.10

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