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Making New Connections After a Myeloma Diagnosis

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Published on March 21, 2018

How can myeloma patients make meaningful connections after being diagnosed? Where can care partners go for support and connection? Andrew Schorr and Lori Puente discuss resources for patients and care partners, where they can go and ask questions and discuss the issues that care partners face during the treatment process. Watch now to learn about these valuable resources.

The Living Well with Myeloma series is a Patient Empowerment Network Program produced by Patient Power. We thank Celgene, Takeda, Amgen and AbbVie for their support.

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Transcript | Making New Connections After a Myeloma Diagnosis

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

Lori Puente:

When people first get diagnosed—and, you were asking me about who did I talk to—I think it’s really important to understand that you’re going to have new, different kinds of friends. And so, I try very hard not to dump all the details of Dave’s myeloma on my non-myeloma friends.

It just—if they’re saying to me, “How’s Dave?”, it’s a social question. It’s not like, “Well, we went to the infusion center yesterday, and they didn’t have it ready, blah blah”—no. It’s like, “Dave’s doing well, and he’s still working, and we’re planning to go to Tahoe this weekend,” and that’s the answer that I give to them.

But, my cancer friends are the ones I can call up and go, “Oh, my gosh…This is what’s going on.” And so, it’s like Robin was saying—the people that you expect to be there aren’t, and the people you don’t know are going to be there are there, and it’s okay. It’s okay because some of the people that aren’t there that you expect to be there—you don’t know why they’re not there.

They don’t know what to say, maybe. Maybe they’ve always been a jerk; you just haven’t noticed. Maybe they’re afraid; they don’t know what to do, they don’t know how to help. Maybe they’ve got their own problems. Maybe their dad’s sick, too, and they don’t want to burden you with that, so they’re just trying to cope. You just don’t know, and don’t worry about it. Just take care of you, take care of your family, and learn how to ask for help, and learn how to communicate certain things to certain groups of people that you’re going to get the kind of support you need.

Andrew Schorr:

I want to mention some resources. First, for the younger people who are diagnosed with myeloma, I want to point out my friend Matthew Zachary’s group called “Stupid Cancer.” Stupid Cancer—and, they just came out with a new mobile app to help young people—young adults in particular who are diagnosed with cancer—connect, so don’t feel left out.

If you’re 16—and, Lori, you told me in the infusion room, you met somebody 16 years old with myeloma—or if you’re 75, there are ways you can connect with people. Stupid Cancer is particularly for younger people. Other resources are on Facebook, there are a number of myeloma groups. My dear friend Cindy Chmielewski that some of you know—myeloma teacher. She helps run one of the groups.

There are various groups on acorn.org, I think on smartpatients.com, inspire.com may have some groups as well, and certainly on Patient Power—also, Patient Power started a group on Facebook, and there are about 76,000 people who follow it now across cancer, and there are some commonalities, and that’s called the Cancer Connection.

And of course, our friends at the Patient Empowerment Network—powerfulpatients.org—have a lot of resources there as well. They have a cool program called Digital Sherpa, so if you’re not really I, Internet-savvy or whoever you’re here for trying to learn more about the Internet, they even have young people helping older people use the Internet to connect with other—so, lots of ways.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

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