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CLL Stress: Mindfulness and Support Groups As an Outlet

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Published on January 13, 2020

Key Takeaways

  • Meditation and mindfulness are important tools in sharing this journey with someone else. 
  • The fears, stresses and social challenges of CLL are similar for those diagnosed with cancer, and support groups can help.

A panel of chronic lymphocytic leukemia patients  share their thoughts on meditation and mindfulness during this "Tools for Managing CLL-Related Stress" program highlight. They also stress the importance of connecting with a group of like-minded individuals who understand firsthand what you are going through for support and stress reduction. Watch as Andrew Schorr, Mark Silverstein and Paul Salmon share why being with others who have similar experiences is important for dealing with the emotional and psychological stress of living with cancer.

This program is sponsored by Pharmacyclics. This organization has no editorial control. It is produced solely by Patient Power.

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Transcript | CLL Stress: Mindfulness and Support Groups As an Outlet

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:                       

So, Paul, to you. You mentioned meditation and mindfulness. A lot of people aren’t familiar with it. I think of going like this and closing my—so, tell me what your routine is. What’s your routine?

Paul Salmon:                             

When I think about a routine, I think the important thing—routines can become mindless, and I think you have to be a little bit careful about that, but I do think that there’s a value in establishing intentions that you follow up on on a regular basis. I think an important aspect of meditation is that it’s not really just a solitary activity.

In fact, one of the core elements of a mindfulness practice is connecting with other people. There’s a word for that. It’s called sangha. It means connecting with a group of like-minded individuals. I would say that’s one of the most vital aspects of having a meditation practice. You can do a certain amount on your own, and I think that makes sense, but it’s really connecting up with other people on the mindfulness groups that I’ve run. I think maybe Barbara or Phil mentioned that. In the aftermath of these groups, people start forming their own subgroups and start getting together, and you’ve mentioned already that there’s a very important social component.

So, for people who feel like meditation is staring at your navel and sitting in the full lotus position, that’s the Madison Avenue aspect of it, and it’s a much deeper way of connecting with other people. I really feel one of the key elements here is a sense of gratitude. You put your own experience in the context of other people, and you really can be grateful for how things are and what you have, so that, to me, is one of the most vital aspects of a meditation practice. It’s being grateful for being alive and having this moment to really treasure.

So, in regard to social support, of course, I’ve been talking a lot about meditation and mindfulness and how valuable that is, I do want to say at a personal level, my partner/spouse Susan Matarese has just been wonderful in terms of offering support with this early stage in the process, the initial diagnosis. It certainly was stressful for both of us. She’s a university professor also, and of course, she has a very busy life, but I’ve always felt fully supported and really am not sure how I’d be handling this absent her constant reassurance and help in going through this process.

I think it’s always helpful when you have somebody to bear your burdens and share the joys of life, too. I’m approaching this both as a professional who does a lot of work with stress reduction, but also as somebody who is fully aware and acknowledges the importance of having other people with you. So, my situation is an interesting one because I’m straddling the fence of being an academician, but at the same time, going through this journey. At this point at the early stage, once again, just to emphasize the importance of sharing this journey with someone else, and I certainly want to acknowledge Susan’s support through this process.

Andrew Schorr:                       

Mark, you lead groups in Toronto. So, is this part of it?

Mark Silverstein:                           

From my perspective, it’s almost like—you’re a bit of a Martian when you get diagnosed with some cancer. You’re almost cleaved off of society in some ways. Your experience becomes different in some way. So, being in a group situation where everyone’s going through the same thing—it’s very validating. You speak the same language. No matter how close the people around you—your family or everyone—is, unless they’ve gone through it, they don’t quite understand what you’re going through. As much as they may like to, they can’t quite grasp the entirety of the diagnosis and the experience.

And so, I truly believe that a group situation is idea to be able to just not feel alone, not feel like all the things that you’re experiencing and all the things that you’re feeling or thinking—they’re not different than other people.

There’s shades of it and differences, but the fact is the fears are there, the stresses are there, the social challenges are there, the sense of—our culture is very productive, very goal-oriented and being productive, and so, when you’re diagnosed with cancer, and all of a sudden, you’re in treatment, and you’re off for a year or so, and you’re not being productive, and you can’t do what you need to in the house, and you’re not bringing money in, and all that stuff, it is a very challenging thing for your sense of being.

And so, being able to talk to other people and understanding that that’s a normal sense of being within the scope of the diagnosis or treatment – I think it’s really important, and it’s very validating, and I agree: Almost every group that I’ve run, the people afterwards—the individuals—get together on their own, have lunches, and go for walks, and stuff like that. Once again, it’s like the Mickey Mouse Club. It’s a club for you, and everyone gets it within the club. I think it’s very – if you can get into a support group, I think it’s very important and beneficial.

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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