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Talking to Friends About a Loved One’s CLL

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Published on November 21, 2019

Key Takeaways

  • Technology allows us to be better connected and to support our friends and loved ones.
  • Many people live with a chronic illness and continue normal lives. 
  • There is a camaraderie that happens among those affected by cancer.  

How do friends cope with a loved one’s cancer diagnosis? During this Patient Café segment, husband and wife team Jay and Maureen Connolly, and Ruth Schorr, whose father is living with chronic lymphocytic leukemia (CLL), share their experiences dealing with friends’ reactions to cancer. Watch as the CLL patient and care partner panel explain how education and technology can help people become better connected, confident and hopeful. 

This is a Patient Empowerment Network program produced by Patient Power. We thank AbbVie, Inc. and Pharmacyclics for their financial support through grants to PEN. These organizations have no editorial control and Patient Power is solely responsible for program content.

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I consider myself a pretty well educated CLL patient but there was much presented today that was new to me, and much more that expanded upon what I already knew or filled in missing bits of information.

— CLL Event attendee

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Transcript |

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.

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.

Andrew Schorr:          

Do you have girlfriends, if you will, and they know that Jay has a cancer, and they’re worried about you.  And you have to sometimes set—I don’t want to say “set them straight,” but you have to let people who maybe don’t understand this wacky illness, and help them “get it” that he’s going on, and you’re going on bike rides, and you’re making plans, you know? Put it in perspective.

Maureen Connolly:    

It doesn’t come up very often because Jay and I both work at the same place, and basically have the same friends. They see how healthy he looks, and I don’t think very many people think about it. But when it does come up, I just—you know, I think when it first happened, I didn’t think I could manage. I didn’t think I should have to work or do anything except immerse myself in the grief of this terrible thing that had happened to us. But as the years have gone by, it just makes me realize how many people live with some kind of chronic illness, and you just do it. And that’s what I say to my friends, is, “You know, this is bad, but it’s not—but we’re just living with it, and we’re gonna be fine. You have to find hope in all the little things.”

Jay Connolly:              

But one thing, Andrew, we work in a high school boarding school. And when kids are adolescents, they’re so self-absorbed, it’s really good for—it’s a really good place to work. Because they go—I could say to a class, “Well, I have cancer, you know,” and they’ll forget about that in two or three minutes because they just—you know, life is all about them. And I don’t say that cynically in any way; it’s just the stage of life. And that’s been really healthy because teaching courses, you need to concentrate on other people.

And I have my own profound capacity for self-absorption, so it’s a good thing to be in an environment where I’m sort of guided away from that, and away from the worry by my relationships with people. And I find that those—although I’m a bit of an introvert— those lift me up during my working day. And so, that’s been very positive, it’s a busy place, and we’re really forced—if we wanna be part of the community—to get on with life.

Andrew Schorr:          

Get on with it. Ruthie, so you have lots of friends, and when they meet you—and maybe somehow maybe because I do a lot on the Internet—somehow they hear, “Oh, your dad has cancer.” Does everybody just move on, it’s not a big deal? Or do you have to sometimes sort of school people, “Hey, he’s been living with this a long time, he’s a busy boy,”?

Ruthie Schorr:            

Yeah, I mean, I think the initial reaction when people hear the word “cancer” is people get very concerned, and people get very worked up. And then, when I say, “Oh, well, he has had since I was two years old,” they say, “Oh, well, you’re a lot older than two now, so I guess that’s a good thing.” And it’s—you know, I’ve been very fortunate to have lots of friends, and obviously my partner, who are really supportive and tuned-in to this stuff. And I think because I’m so educated on it, it is easier for me to be able to speak with my friends about it and feel confident in the way that I speak about it, and the way that I’m hopeful about it.

I think the other thing that’s really interesting is just with the way that the Internet is now and everyone being so connected, and knowing a lot of intimate details about people’s lives, is that a lot of people are affected by cancer, you know? Whether it’s them directly, or their parent, or their grandmother, or grandfather or a friend, and I think there’s almost some kind of camaraderie in that. They said, “You know, we all are impacted by this in some way, and if we can keep moving forward, and being hopeful for each other, and kind of willing it into the universe that hopefully, as long as people can get the right care for them, that they’ll live a long life.” I think that’s kind of been settling, for me and for the people that I surround myself with. And I think it’s been really positive, even though the root of being connected by something like cancer is something you never hope that someone can relate to you on.

Andrew Schorr:          

We don’t choose it.

Ruthie Schorr:            

It’s almost—right, but it brings some kind of peace in the fact that you say, “Hey, I know what you’re going through,” or “I know somebody who went through what you’re going through.” And I feel that I’ve been able to hopefully, give some of that insight to some of my friends who have with their parent, or with someone else in their family, been able to face it and say, “Hey, you know, I’ve been around this for my entire life. And I really don’t remember a world where it wasn’t a part of my life.”

And it helps when they see all of your adventures on Facebook, and all of the wonderful travels that you do, that you’re like, “You know, Andrew’s just out there and just doing it,” and it’s not letting it limit you. And I think that that brings a lot of peace to the topic.

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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