Published on February 24, 2013
Cheryl Boyce and Matt Hare, patient advocates, share their experience of being diagnosed with myeloma. Cheryl's desire to be perceived as a strong woman initially made her reluctant to discuss her experiences with the disease. With time Cheryl realized the importance and value of communicating with others. Matt Hare adds that after his initial shock of being diagnosed with myeloma, he felt a responsibility to help others become more aware of the disease by conveying accurate information.
Transcript | Communicating With Friends and Family
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Cheryl, I want to talk to you about communication. There are a number of family members who have come or friends, and you mentioned, Lois. Your friends know when you’re taking pills and they kind of know your cycle now, and people worry about you. The question whether you’re newly diagnosed or living with it, is, what to say when.
I think that there are different stages of wanting to communicate with me. There are so many things about the myeloma experience I really have put in the back of my mind because I don’t want to think about them every day, but as Lois was talking—I still have days where I can’t get out of bed, and I don’t want to necessarily feel like I’m dependent on anybody or creating worry.
But one of the concerns I had, when I was going through the myeloma, that I vividly remember—I think that I’m a very strong person and I like for people to perceive me as strong. Myeloma really humbled me, and so for a while there I was a teeter-totter where I would kind of keep my stuff to myself. They were keeping the stuff to themselves as though we were somehow supporting each other. It didn’t take us long to figure out that we were all in this together and that even if we couldn’t answer the problems, we needed to have the discussion.
We tried to protect our daughter. As it turned out, I relapsed. She ended up protecting us. But everybody brings something to the equation, and I think that one of the things that we all realized is that there are strengths within each of us that remain untapped, that somehow in the midst of the myeloma journey people rose to the occasion. But you can only do that when you are sharing. And so I think the communication becomes really important with your family and your friends and your loved ones.
It also becomes really important with your doctor. I think that there were times that I thought things were so insignificant, he was so busy, and that I shouldn’t have shared it with him. I got to the point I share everything. Multiple myeloma is really confusing because there aren’t definitive answers. Everybody walks their own journey and they experience this disease in their own way. Every tidbit of information you can pick up along the way, everything you can share with somebody else fortifies you for the battle.
And so I think that for the people who don’t want to share the weakness, for people who feel like they’re talking too much—we all have something to share and to give that will help somebody else, and you just never know what that is or when you’re the person sharing it or receiving it. So I think communication is critically important and not just talking to the people who have the expertise and the science. So much of this is predicated on your lifestyle, what it is that you want to do, and you never know who is going to be put in your path to give you that.
Matt, I want to give you a chance. You are in a different stage of life than many of the people here. You have friends who have never been touched by cancer, or like masters of the universe, and healthy. Do you talk about it at all? I mean, not that you wear a sign, but how do you communicate with people or not? Or if you’re sometime—I know you went through a transplant. It’s tough. Did you ask for support?
Yeah, after I got over the initial shock of the diagnosis and finding out what it meant, I took it as a responsibility and almost a privilege to be someone who brought this disease some awareness, so I talked about it every chance I got. Social media is such a major part of our lives now, I got very involved in that, I had a CaringBridge website. And when I didn’t feel well enough to post, my parents would post and just letting people know that this disease is out there.
And so many people would read the statistics, that you mentioned, online and I’d just go back to hearing my professors in college saying a third of what’s on the internet is crap, anyway. So I thought about that with myeloma. All these things that say two- to five-year survival rate and things like that. Well, that’s just because someone hasn’t gotten on there and updated the information. So I wanted to be someone who was relaying these facts out to my small web, and then hopefully that was splintering out. So I took it as a responsibility.