If we’re gonna make it
Cross this river alive
You need to think like a boat
And go with the tide
And I know where you’ve been
Has really left you in doubt
Of ever finding a harbour
Of figuring this out
And you’re gonna need, all the help you can get
So lift up your arms now, and reach for it
And reach for it
And take your time babe
It’s not as bad as it seemed
You’ll be fine babe
It’s just some rivers and streams
In between, you and where you want to be
Watch the signs now
You’ll know what they mean
You’ll be fine now
Just stay close to me
And may good hope, walk with you through everything
~”Song of Good Hope”, Glen Hansard
Glen Hansard wrote the “Song of Good Hope” for a dear friend battling cancer. The song references the rough waters sailors endured to reach the Cape of Good Hope and their feelings of relief when they made it. The message of needing help, and reaching out for friends to walk with through troubled times is comforting.
When I was first diagnosed with multiple myeloma the thought of joining a “support group” was not appealing. I hadn’t come to grips with my own diagnosis and the thought of being with people describing the extent of their illness, and the loss of members from the group, was frightening. In time, I came to understand the value of sharing stories with other patients, and talking to people ahead of me on the journey was some of the best medicine I could get. While I’ve not joined a traditional in-person support group, I’ve found other ways to reach out and lend a hand.
I started documenting my time with myeloma just before my stem cell transplant in 2015. While I write these columns first for myself, a form a journaling, I always hope someone is inspired after reading my story. For those that know me, but don’t know about myeloma, I hope they learn something about this disease. For those that don’t know me, but are themselves touched by myeloma, I want my writing to answer questions, alleviate fear, and offer hope. I’ve heard from many people, friends and strangers, and I believe I’m achieving these goals.
Today the internet offers cancer patients endless alternatives too in-person support groups to seek information about myeloma and it’s treatment. Patients must exercise extreme caution when reading on-line information because much of it is outdated, inaccurate and frightening. There are, however, many great resources. Some of the reliable organizations on line include the Multiple Myeloma Research Foundation, All4Cure,The International Myeloma Foundation, International Myeloma Society. Each organization has its own identity, but they all have education of patients and advancing research for a cure as common goals.
The Health Tree Foundation is another great resource. I’ve joined the Myeloma Coach program sponsored by Healthtree. The foundation experts and doctors train the coaches and provide them tools to help patients. Patients can connect with coaches with a similar disease profile, undergoing specific treatments, living in certain geographic areas or offering advice on particular subjects. I’ve met with several patients and the experience is always positive. If you are looking to connect with a fellow patient or caregiver give the Myeloma Coach program a try.
A cancer diagnosis is challenging. There are rough waters to navigate, but there are people that have gone before ready to provide comfort and guidance.
Watch the signs now
You’ll know what they mean
You’ll be fine now
Just stay close to me
And may good hope, walk with you through everything
Lens on Myeloma 