You have cancer. No one ever expects to hear those words. Other people get cancer, not you. Multiple Myeloma? What in the world is that? Most individuals diagnosed with myeloma have never heard of it before they were diagnosed. But once diagnosed, they are immediately flooded with information, questions, and options for treatment. They need to decide quickly and feel pressure to make decisions instantly.
When my husband was diagnosed he felt like he was trying to “drink from a firehose” as there was so much information coming at him all at once. As we were trying to process the shock of it all, we felt alone, scared and overwhelmed. Relief came in connecting with a friend who had been diagnosed several years earlier. She guided us to diagnostic tests we should ask for and recommended that we see a myeloma specialist. We feel that following her advice made a significant impact on his response to treatment and outcomes.
Once my husband’s health stabilized, he would walk around the infusion room during his treatment, to meet other myeloma patients. He would offer support, encouragement and share resources that had helped him navigate his care. Not only did this hopefully help those he met, it drastically helped HIM. It was therapeutic for him to meet others, share his myeloma story and hear their story.
The Myeloma Crowd would like to share the benefits of connecting with others in our myeloma community by introducing a new program called Myeloma Coach. This program allows myeloma patients or caregivers to give back by coaching other myeloma patients one-on-one.
Coaches will receive ongoing training on a variety of resources and have access to a knowledge base of information. Training will include online videos, webinars and classes that will be readily available, so it’s easy to find the right answer to every question. Coaches can connect with patients however works for them, by phone, in person, email or video chat.
Coaches are asked to commit to volunteer 8 hours a month for at least one year. For their commitment and service, Myeloma Coaches will receive specialized education, potential attendance at a summer summit in Deer Valley, Utah and coach materials. They will also be rewarded by knowing that they are helping fellow myeloma friends live longer and better lives.
There is power in connection. A recent study that included more than one million patients in the Journal of Clinical Oncology highlights the potentially significant impact that social support can have on cancer detection, treatment, and survival.
Myeloma Coach Training from March 18 – April 15 and Beyond
For the first month, we will be focusing solely on training new Myeloma Coaches, so please be patient to find a coach as we ramp up our efforts and introduce this new program. Our initial training will take place beginning March 18 through April 15. Coaches who join the program after this time period will be able to access the same training materials at their convenience.
Find a Myeloma Coach starting on April 15
Once the initial group of Myeloma Coaches have been trained, you can go to the myelomacoach.org website and find a coach in your area.
If you would like to become a Myeloma Coach, visit our website at myelomacoach.org. Together we can reach all 100,000 myeloma patients and extend life. (Email me at firstname.lastname@example.org if you have any questions.)
“Alone we can do so little, together we can do so much.”
– Helen Keller
Thanks to our sponsors for making this program possible: