CLL Patient Café 2016 Participants Share Their Dating Advice

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Topics include: Patient Stories

Are there challenges that CLL patients face when entering the dating world?  Carol Preston hosts this Patient Café with three single CLL patients: Jennifer, Susan and John.  Together, they share their advice for dating when you have cancer and disclosing your diagnosis.  The conversation goes deeper as they discuss rejection, motivation and self-talk.

Sponsored by the Patient Empowerment Network through educational grants from AbbVie and Genentech Inc.

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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. 

Carol Preston:

Let me ask all of you, in no particular order, if—for people who are watching this, presumably CLLers who are watching this and are struggling with this question about the timing if they meet somebody, getting in a relationship, do you have any advice or—what can you offer people who would like to date, who would like to get into a relationship? And share whether it’s CLL, melanoma, the thyroid cancer that at least two of you have suffered—so, what can you offer our fellow CLLers? 

John:     

Can I speak please? 

Carol Preston:   

John:     

May I? So I love quotes and another comes to mind with that. No matter where you are—this is kinda a joke. No matter where you are in your neurosis, there’ll always be someone there to meet you halfway. It’s like, wherever you are in life, there’s gonna be someone to love you, there’s gonna be someone that can meet you halfway, and so you know what? That’s cool. 

And sometimes it’s like a lottery, you never know when it’s gonna happen. So, you just have to keep yourself open and keep hope alive. I think a cancer diagnosis kind of kills the—it killed my idea of hope. Like, what is hope? What is hope? And for a long time, I didn’t have it. So, I’m sorta reattached to it and—yeah, so… 

Carol Preston:   

All right, Jennifer? 

Jennifer:               

You know, what that makes me think of John is that—you say it killed your hope. For me, it realized—it made me realize that for so long I had no hope with anything. I had been in an unhappy relationship, and I was just unhappy, in a stagnant place in my life. And I kind of just decided that whatever it is that I wanted, whatever it is that I dreamed of, whatever it is that I envisioned I wanted to make it happen.

And I do have to tell myself every day—and I do this self-talk, and I look in the mirror and I say, “There is a person out there that will love me with all my CLL, with all of my—with my CLL.” And I have to actually say that and looking in the mirror and do this self-talk thing, because it kind of looms in the back of your head. And it’s almost as if I act as if I believe it—you kind of just start to believe it. And it’s—I refuse to not have the life that I’ve always dreamed of because of CLL.

Carol Preston:   

I was just gonna say, would you—and so advice to anybody who’s watching is maybe to give themselves a self-talk. 

Jennifer:               

Well, self-talk is actually—even in my practice, I do it all the time and I recommend it to people. It’s really important. If yousay it enough times, you start to believe it. And I really—every day when I look in the mirror, I brush my teeth, and I say, “There is someone out there that will love me with all of my CLL.” And I—to be honest with you, I—it just—it works, so yes self-talk works and not giving up on any of your dreams that you ever had. Just don’t give up because of CLL.

Carol Preston:   

And, Susan, you have such a close relationship, not just with your brother but also your nephews, and that’s a very strong relationship. This family circle, they really have—I won’t say they have circled the wagons, but they’ve really folded you in. So, for people who are suffering—I’m not gonna say suffering, but who have CLL and many of us are living well, what would you like to say to them? 

Susan:   

I absolutely second what—again, what a lot of what Jennifer just no expressed—was her experience and earlier on this evening Jennifer spoke about the gift of CLL. On a bigger scale, I have, in my own life, been known to say the gift of cancer. I—my life was transformed through living with cancer, and I stopped feeling sorry for myself.

I would want anybody who is diagnosed to recognize that they didn’t do anything—it’s not like they did something wrong to deserve this as some kind of penance and if they’re going to be—if they are actually starting a new relationship when they’re diagnosed, this is part of the gift, that the relationship might go on this journey.

Carol Preston:

And are there any outside resources—maybe I don’t know if Jennifer can answer this best, but beyond the self-talk and making sure that we—we need to talk ourselves into hope and dreams before we can convince anyone else. If we don’t believe it, nobody else will. But is there any place that people can go? Obviously, they can watch this program, and we hope that we touch a few people. But any thoughts about what people can do or what they can read to give themselves a boost? 

Especially when they’re thinking about either embarking on a relationship or how to get started?

Jennifer:               

I actually cannot think of anything off-hand, but I have often thought to myself that I would love to, at some point, have a dating website for people with cancer because it’s—and I think they’re out there. When I did the research, I heard they were out there.

Carol Preston:   

Really? 

Jennifer:               

And, yeah, no they do exist, and I just think there’s something that we share, and I’m not saying that people without cancer can’t really understand to empathize, but there’s just something that we share that is—it’s transforming and can be a really beautiful thing.

And I find that all the people that I’ve met and even through Patient Power and—when they have a cancer diagnosis or CLL, the connection we have—it’s instant connection, and I’m exchanging—we’re exchanging phone numbers, emails and again part of that part of the world living with cancer. So my advice would be, if you’re living with it, put yourself—surround yourself with people living with it. 

Carol Preston:   

Patient Power, you listening to this? We can get a dating—we can get a—and I’m not…

Jennifer:               

That’s my idea, Carol.

Carol Preston:   

This is Jennifer’s idea. I take absolutely no credit, but I—you know what? I’m chuckling, and I’m smiling, because it’s really from the heart. It’s actually…

Jennifer:               

Well, the Patient Power has connected me with so many people with CLL, which is amazing, because sometimes I’ll go on the website, I’ll see someone, and I’ll contact them or contact the website. I’ve gotten emails form the website having people ask to contact me.

So it’s an unbelievable resource for CLL specifically. Well, for all cancers, but for me with my CLL it’s been an unbelievable resource, because it’s not common. I don’t meet many women my age with CLL. So through Patient Power, I met someone in Boston my age. So it’s been very helpful.

Carol Preston:   

And those are important relationships as well.

Jennifer:               

Very important.

Carol Preston:   

Let me just turn very quickly as we wrap up—thank you, Jennifer—to John and then Susan. Any final words for our viewing audience just in terms of how they might move forward with relationships? I don’t know John, maybe there’s one more quote you have to share with us? Or if not…

John:     

Yeah, thank you…

Carol Preston:   

Just remind us…

John:     

…let me think for a moment.

That people are basically good and if they can’t handle it, they can’t handle it. Move on to the next person. It has nothing to do with you. Don’t take it personal if somebody flips out and then be sure why you’re telling that person. Do you want sympathy or do you want—what is your motivation to disclose that you have CLL? Not to hide it, but to be very clear why you’re sharing it. 

Carol Preston:   

Excellent, excellent advice. I think we all have to take a look at our own motivations. And, Susan, what words would you like to leave us with today?

Susan:   

I think information is power. I can’t encourage people enough who are newly diagnosed to partner with their doctors and to develop good support system.

Carol Preston:   

So I like that. Information is power, and I also really take to heart what John said about figuring out our own motivation for telling someone. Beyond sympathy, in terms of establishing a new relationship. And, Jennifer, what you said about talking the talk. We talk about walking the walk, but talking the talk to ourselves, with ourselves to make sure that our own hopes and dreams don’t get buried by cancer, that it bubbles to the surface and that we look upon it as a gift to make sure that we are who we want to be, as opposed to someone else that we should be.

John, from San Francisco, I’d like to thank you for joining us today. Jennifer in Massachusetts by way of New York and also Susan on the West Coast of Florida. 

I’m Carol Preston with the Patient Café. Thank you so much for watching and just remember to think about your motivations, hold on to your dreams, and continue to ask good questions. Thanks everybody. Bye-bye. 

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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Page last updated on December 13, 2016