How Do Patients Handle Communicating With Family About CLL?

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Topics include: Patient Stories

Many chronic lymphocytic leukemia (CLL) patients wonder how to discuss their diagnosis with family and friends, or if they should discuss it at all. Who should I tell? What should I say? During this Patient Café segment, a panel of CLL patients, including Jeff Folloder, Michele Nadeem-Baker and Jeff Brochstein, share how they chose to approach the sensitive subject with the ones closest to them, and ways people reacted when they broke the news.

This is a Patient Empowerment Network program produced by Patient Power. We thank AbbVie, Inc. and Pharmacyclics for their support.

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Transcript

And I did.  And so now I make sure that people understand what it is that I think they need to hear.  I don't tell everyone the gory details of my CLL experience.  Some people I tell, yes, I've got cancer.  I'm a survivor, or I'm in remission, or I've relapsed.  And the people I care about, I make sure they understand what's really going on and how it affects me. 

And at this point some almost nine years after diagnosis, and I know this is going to sound very counterintuitive, cancer gave me an awful lot of opportunity.  I would have not had the ability to pull the hand break up on my life and reprioritize everything without a cancer diagnosis.  I was moving too fast.  Concentrating on the wrong things.  Spending my energy on the wrong things.  Now I focus on the right things. 

And as Andrew is fond of saying, I've learned how to live well, and that's because I've learned from everyone involved with Patient Power.

As a matter of fact, I did not come, you know, out until I started in the infusion room and reported for Patient Power from it each time. 

I was in infusion with the FCR part of my trial.  So it dawned on me that in the past I had worked with the American Cancer Society and convinced people to come out about their cancer and explain to other patients.  And I felt somewhat like a hypocrite that I did not, and I realized it was time.  It was really time to do that.  And it wasn't only about me.  It was about others as well.  And that really helped empower me a lot. 

And also as Jeff has said and I was saying before, it really does help you prioritize what is right, the right things to be spending your time on because I was on the hamster wheel of career and never sleeping, and this forced me, I had to.  And as you said, naps aren't a bad thing.  I had to learn that, too.  So it does help in certain ways, although it's not a great way to have to learn the lesson.  It is what we have, so you have to make lemonade out of lemon s, and I think that's what all of us here have been doing. 

You know, I had other people who kind of buried me already because I told them cancer, and they stopped reaching out to me.  And even up until today I still get a rare text message from some of these folks asking me, not in these words, but they pretty much ask me if I'm still alive.  And I've kind of put them out of my life. 

And there were some who were understanding, who actually read up on the things that I had sent them about CLL and how it's chronic and how there are all these emerging therapies on it. 

So really for about a couple years after that, to kind of going to what Michelle was saying I was kind of in the closet about it.  And then when my lymph nodes in my neck became a little more apparent and I really couldn't explain it away all that easy, I came out a little bit more about it.  And, you know, like I said, there have been people who have been very understanding.  There have been people who have told me, well, it's chronic and you're taking a pill for it now so it can't be that bad.  And there's been other people who have been like, oh, my God, cancer, you're still alive.

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 May 22, 2019