Patient Power hosted a recent interview with a panel of multiple myeloma patients to discuss valuable advice to help others navigate their journey with cancer.
The 7 myeloma patients offered many tips for coping with a new myeloma diagnosis:
Advocate for Yourself
It’s important to advocate for yourself in more than just your health. Myeloma patient Steve Simpson gave an example: “If I walk out of an appointment with my hematologist with a question unanswered, that’s my fault. Not his.” As patients, it’s important to do our own research and know about our disease and progression within it. Never give up an opportunity to learn more about your illness–because ultimately, you are the one making decisions that will affect your survival and well-being.
Value Your Own Opinion
Myeloma patient and advocate Cindy Chmielewski admitted that when she was first diagnosed, she was scared to disagree with someone out of fear of not being liked or not receiving the best possible care. “People actually respected me when I started advocating for myself and kept becoming that empowered patient.”
Myeloma patient Lynn Worthen said it best–“None of us picked having myeloma. We didn’t choose that, but we can choose how he handle it mentally, our attitude about it, all those kind of things. And it is very, very important to have as positive an attitude every day as do. Sometimes it’s hard because this stuff can drag up into a dark hole, but whatever it takes to keep your spirits up and to be positive about things will help a great deal even in the treatment process.”
Establish a Support System
The journey of a cancer patient can often be lonely. Find your community. Don’t walk the journey alone. In the words of myeloma patient Jill Zitzewitz, “It was hard to say yes to the meals that people wanted to provide or to help with the kids, but be willing to accept people’s help and don’t try to walk it alone and just rely on people around you to help care for you when you need that.”
See a Myeloma Specialist
A myeloma specialist is a physician who treats strictly myeloma patients or myeloma patients and other patients with very closely related blood cancers. There are too many advances being made at a fast rate–this is the best way to keep up and get the best treatment.
Don’t Give Up
“Like it’s going to be okay. Like multiple myeloma, even though I’m young, it was not the end of the world. I still have a long life ahead of me, and there’s a lot of treatments on the horizon. There’s a lot of information out there, and you’ll grow into it. It was a little overwhelming at first and that can’t be helped. You’re going to feel those feelings of sadness, and it’s a grieving process, but you’ll be okay,” –Melissa Vaughn, myeloma patient.