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Mental and Emotional Health: Where Can CLL Patients Gain Support?

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Published on July 5, 2019

During this Patient Café segment, a panel of people living with chronic lymphocytic leukemia (CLL), including Patient Power founder Andrew Schorr, Maggie Buckenmayer and Adrian Warnock, talk about treatment, family life and who they lean on for support. Patient Power co-founder and care partner Esther Schorr also shares ways to be actively involved in a loved ones’ care and provide support. 

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

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Transcript | Mental and Emotional Health: Where Can CLL Patients Gain Support?

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:          

What about the role of a care partner, whether it’s a wife or best friend or adult children? What would you say to care partners?

Esther Schorr:             

Well, I just wanna back up for just a second and acknowledge what I just heard from all of you, and especially you, Maggie, because of the very high emotional impact. I just wanna acknowledge that for care partners with a loved one who’s diagnosed with something that feels and may well be very serious, the emotional impact can be as severe for your loved ones as it is for a patient in a different way.

Like, you feel helpless. I know that when Andrew was diagnosed, my feelings of, “Oh, my God, what can I do to help with this situation, because it’s purely a medical thing. I'm not a medical person. What’s the role of me as, I call myself a care partner.” And so, what I would say is over the years, what I've felt was the best way for me to support Andrew through a lot of ups and downs, it to be an advocate. Be a researcher and find ways for me to keep my head straight, when he happens to be a very practical kind of guy. But if he were somebody who was also very emotional, I think the role would be to be the voice of reason, the voice of practicality, looking at what dietary options there might be, what treatment options there might be. 

Be actively involved in the discussions with the healthcare team, so that there are two sets of ears that are hearing the same thing. I’ve just felt like I've been the partner advocate for Andrew, and a pair of listening ears that’s digesting what’s being said, processing it, and giving him back, hopefully, an educated opinion about direction to go. 

So, I don't know if that answers your question, Andrew, but I think it’s a lot of advocacy, and being the person that’s gonna look at what are the more holistic supplementary things that can be done to support somebody who’s made a treatment decision. Let’s put it that way, because ultimately a patient has to decide. My body, my decision, with my doctor. But being a care partner is also about lending some sort of an educated perspective, and saying, “Here are some other things that we might consider doing together, or how I may be able to help you.

Andrew Schorr:          

Maggie, do you draw on the family? You ended up telling them all. Do you draw on them for support?

Maggie Buckenmayer:           

I really do. My husband has been amazing. He’s kind of like my steady rock, and he goes to every doctor’s appointment with me. He transcribes everything that’s said in the doctors’ appointments. He researches with me on the Internet, so that’s an amazing—my twin sister and her husband are both therapists and have helped walk me through that. 

My children are very understanding. They were very frightened when I first told them, and I try to give them more and more information. I've given them the link to your website. That’s helped them immensely. So, and then I’ve told a close group of friends, too, and they’re very supportive. Not many of them really understand the disease, but they’re very supportive. So, for me, it’s critical I have that support system.

Esther Schorr:             

Andrew, I was just going to add one other thing, that there isn’t always a family member that’s available. I just want to acknowledge that sometimes, somebody doesn’t have a partner, or a sister, or a father, or an adult child, but as a care partner, I would encourage anybody that’s dealing with this kind of thing, find somebody in your life, even if it’s a nurse, or it’s a counselor, or somebody that is going to take on that role for you, because it’s really important.

Andrew Schorr:          

So true. Now, Adrian, you have five kids, right?

Adrian Warnock:        

Yes, that’s right. The youngest is 12 and the oldest is 22, so that’s quite a range.

 

Andrew Schorr:          

How have you gone through this? I mean, you probably have an active family life. You’ve had hospitalizations, you’re going through FCR. So, talk about treatment, family life, support –

Adrian Warnock:        

It’s funny, our family life becomes a little bit different. I had to have a word with my 12-year-old, to make sure he understood that words like cancer and hospital are not so normal. But a lot of other families, and a lot of other kids, and so he could really freak out his friends, perhaps, by talking about, “Oh yeah, my dad’s got cancer and he’s in the hospital again.”

It becomes almost a bit of a matter of fact when you go into hospital so many times in a short period of time. Sometimes I have to say to my children, “I’m going off to get an infusion,” and they’re like, “Oh are you staying in hospital tonight?” I said, “No, no. The plan is for me to come home.” So yeah, it becomes part of family life, to a certain extent. Obviously very difficult at the beginning, and I think sometimes very difficult as it goes on and on.  

Actually, in many ways, watch and wait was almost harder than when I was being treated, because at least they see that there’s a problem, and that the doctors are doing something about it. It can be quite hard, I think, for family life to continue when one member is really struggling to keep up. Like on the holidays, for example, I sit in the car while they’re all climbing a hill, and all of those kinds of things. It is tough, but I think people are resilient, and I would certainly say that the support from my family and friends has been amazing really.

But I would also sayI think for me personally, it’s been really important to get some support from outside the family as well, and actually professional support. So, for me, I certainly struggled a lot with adapting to the diagnosis, particularly during watch and wait, where you feel like you’re in a form of purgatory. Too sick to work, too sick to enjoy life, but not sick enough to need treatment. And so, that was hard to deal with, and I think my poor wife. You know, it’s important that I had another outlet to talk to about that. 

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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