Patient Perspective on Enjoying Life With CLL: Staying Positive During Treatment

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Topics include: Patient Stories

Whether someone is in watch and wait, in remission or undergoing treatment, how can chronic lymphocytic leukemia (CLL) patients remain positive and enjoy life? Meet patient advocate Carol Preston, as she shares encouraging advice to help others living with CLL continue to experience a full, balanced and meaningful life. Carol also gives tips on how to ask for support when patients need assistance with doctors' appointments or at home. Tune in to find out more.

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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.

Andrew Schorr:

And so, Carol, I wanted to talk to you about that, living your life.  Whether it's watch and wait or watch and worry, or in between remissions or never knowing how long a remission is going to be but it's still there in even barely detectable levels going on with your life.  What would you say to people about living with CLL rather than that being really depression on your life? 

Then suddenly cancer wins. Cancer takes over.  And cancer patients who have survived—and I know there are a lot of cancer patients there are so many different kinds, that they do get sidelined.  They have to stop.  They have to take precautions.  

But not only feeling normal but talking to the company with which I work on consulting, and my boss said to me, if you tell me you can do it, then I'm going to let you do it.  You will be assigned.  He said, if you tell me you can't, then we won't.  And he said that was our deal, that I would be honest and he would be honest, and it didn't prevent me from doing anything.  

Now, I was fortunate enough, it's never fortunate to get a serious diagnosis, but that both of our sons were already grown and basically gone in graduate school, working.  I'd have to think back about where they were, so I didn't have the additional challenge of taking care of young children. 

And I do have a spouse. I would call him more of a partner than a caregiver, and he will be the first to acknowledge.  He said I didn't do—I didn't do much caregiving, but he was always there.  He went with me when I needed him to for appointments and so on and so forth.   

But I also developed a ring of people of support, support on whom I could draw when I needed it.  For example, under my original treatment I was given diphenhydramine (Benadryl), which makes you very sleepy, and you're not supposed to drive if you've been on Benadryl.

So my husband was working at the time, and I made arrangements for support people to pick me up.  And, by the way, there's a wonderful tool now—there are probably many, but the one that is very prevalent, and I'll just pass this along to patients who are looking to line up their team of support, it's called SignUpGenius, all one word, SignUpGenius, where you can create a template.  I need to be driven to the doctor this day, I need to be picked up this day, and people can sign up.  They can check it off rather than making phone calls, which is exhausting.  

Because the hardest thing to do is really to pick up the phone and make these calls and ask.  But this is a way that you can solicit and elicit support, and everybody wants??then people say ah, now I know what I can do. Make a meal.  Now I know how I can help.   

So there are lots of cool tools.  And I know that this is a wide?ranging discussion on newly diagnosed patients, we all have so up much information, but I get very excited about the ways that we can reach out and have many people touch our lives and help without feeling like they're interfering or without turning away.  So many times people don't know what to say, and as Susan, you said earlier, so they say, well, you know, if you had to have—and I had many, many people by the way who said that to me well, if you had to get a cancer, this is a good one.  

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 January 22, 2019