Patient Café 2016: The Impact of CLL on Romantic Relationships

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What impact does cancer have on a romantic relationship?  With Carol Preston as host of this Patient Café, Jennifer and Susan describe how their lives with CLL affected their marriages.  They explain their thoughts on emotional support and its vital role in enduring cancer.

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

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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:

So let’s talk about the impact, if any, that CLL has had on these relationships. Now, Jennifer, you mentioned that you’re recently single, but you’ve been going through several cancers, and CLL wasn’t the first one. So whether it’s CLL or anything else, was there something different about CLL that changed things?

Jennifer:               

Well, what was different about it was especially finding out that I had the unmutated type, which is—it’s not the preferable kind of CLL if you can call it that. I actually got really scared. 

And when I say that it—my CLL has been a blessing, I don’t mean to minimize it all in any way. The impact it’s had on my life; it’s actually traumatized me. But, I have—I just decided early to really make it the best thing in terms of why would I possibly get three cancers before the age of 50 if I did not need—there was not a lesson in it to be learned?

So when I say it’s a blessing, it’s a blessing because of the work I’ve done since, but it’s been absolutely devastating and traumatizing. And for me, how it was different is that I didn’t get any support with the other two cancers with the relationship I was in, in my marriage, but with the thyroid cancer, it was—there’s a 95 percent survival rate and with the melanoma they got it in time, and it didn’t travel anywhere.

So I felt like maybe I didn’t need that much support. Maybe I was being a baby, but the CLL is a real bang, and my first thought was I will not survive in the relationship I’m in. So it took me three years to actually leave, because I was—the fear of actually divorcing my husband and then dying and the impact that would have on my children was—it was just unsurmountable. I did not think I could actually do that to them.

But at that time, I was convinced that I was going to die from CLL. When I realized that—you know what? I’m not gonna die from it, and it is what it is, and I just—you know what’s interesting? I’m gonna backtrack for a second. I told my oncologist—I said, “I’m leaving my husband.” Okay, so she actually gave me and a high five and I said, “Why are you giving me a high five?” And she said, “Considering I’ve never met him in three years of treatment, I think this is the start of your well-being—your good health, if you will.” So, that’s just a way to explain how it’s been and how CLL impacted that relationship.

It really scared the bejesus out of me and I realized that I’m—I was alone anyway. So, staying in a relationship just to have someone wasn’t really the answer, because it’s incredibly painful to not have my—it was incredibly painful to not have my emotional needs met in terms of my illness. So it’s been very empowering, and I am thankful to CLL for giving me the chutzpah to leave.

Carol Preston:   

And what about—I just wanna—before we leave and—Susan, I wanna pick up with you, because you’re three or four years now into the CLL if I have that correctly.

Susan:   

I’m approximately three years into being active.

Carol Preston:   

Into being active. 

Susan:   

Approximately 11 years since I was diagnosed.

Carol Preston:   

Okay. Yeah, okay long—and…

Susan:   

I have to say that I was—I actually believe that I was going to fall into the population of patients that could live their lifetime being inactive forever because I was so close to that 10-year mark. 

Jessica: 

I didn’t know that population existed, but I’m…

Carol Preston:   

You mean the walking wait?

Jessica: 

Or the watch and worry?

Carol Preston:   

Or the watch and worry, yes. 

John:     

Active monitoring.

Susan:   

Pardon?

Carol Preston:   

Active monitoring. 

John:     

Active monitoring.

Carol Preston:   

So, Susan, while we have you on the screen, let’s hear a little bit about—so, when you were—you were diagnosed, you became active three years ago, and your divorce was how long ago?

Susan:   

Oh, my divorce was eight years ago when I left Los Angeles.

I—my only family is my brother, and we’re extremely close. And I left Los Angeles in order to hitch my wagon to him and his family. And I can identify 100 percent with so much of what Jennifer described, because while it may not have been about the CLL specifically, it was about my thyroid cancer, which was active and I went through multiple treatments and surgeries, and I felt—my husband went to appointments with me, Jennifer, but I felt alone. And one of my doctors said to me—who knew my husband—once I was diagnosed with CLL, “He’s not—one day you’re gonna be sick, and he’s not gonna be there for you.” 

And I felt more alone with the burden of this emptiness in this relationship than if I could just know that I could count on me without the shackles of somebody else. And I’ve been blessed in my relationship for my brother for complete support, who goes to all of my major appointments with me. And it’s been a complete transformation in my life. I am calm.

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