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Emotions of Cancer: Resources for AML Patients and Care Partners

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Published on April 1, 2019

What resources are effective in helping people cope with the emotional side of acute myeloid leukemia (AML)? Patient Power host Beth Probert is joined by Michelle Rajotte from The Leukemia & Lymphoma Society (LLS) to discuss tools available nationwide that can provide professional and communal support for patients, caregivers and families dealing with cancer. Watch now to learn more.

This is a Patient Empowerment Network program produced by Patient Power in partnership with The Leukemia & Lymphoma Society.  We thank Celgene Corporation, Daiichi Sankyo, Genentech, Helsinn and Novartis for their support.

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Transcript | Emotions of Cancer: Resources for AML Patients and Care Partners

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.

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.

Beth Probert:              

So, now, Michelle, I definitely see that your role at LLS plays a huge part in this. And in your experience, how do you deal with this? What resources seem to be the most effective that you can provide patients in coping and the emotional side of this cancer diagnosis, and also, taking parts of what Dr. LeBlanc just said, I would love to hear from you now and what your role is.

Michelle Rajotte:        

Sure. I think it's different for different people. We'll talk to people who want to know everything, and we'll talk to people who just say, "Just tell me the basics, I can't get overwhelmed right now." And it also depends on where they are in their cancer journey. Are they just diagnosed; are they relapsed? I think a big piece is being able to talk to other people who can relate to what they are going through.

So, other people who have been through this already and have gotten to the other side and feel like, okay, it can get better, there is hope. Here's some things that might help. Because unless you’ve been through it yourself, I don’t think you can completely understand. You can empathize, you can be there for someone, but your friends and your family may not be able to give you that support that someone could that has been through it.

So, for example, at LLS we have the Patti Robinson First Connection Program, which can help over the phone to be able to talk with someone. And they may be across the country, but they may be very similar in background to you and be able to answer some questions that you have while you're going through things.

There's an LLS community where you can go on and talk with people. We have a lot of online support groups. There are online chats that are set up to be able to talk with, again, others, it could be across the country, they're people you may have never had the opportunity to meet. Or if you're not doing well, or you're in the hospital, or your immune system's compromised, you still can reach out and get that support.

And it's not going to be something where you physically have to go somewhere, but there are those options too. Or someone may not be ready to go sit in a group and talk about what they're going through but can sit in front of a computer and just say, "All right, I really do need to talk to someone."

Also getting professional support from a social worker, or a counsellor, or just anyone who can help you get through this because it is extremely stressful. And some people think, "Oh, I really don’t need that." But it may be exactly what you need just to help you get through it.

Also, pulling in friends and family. And again, sometimes they may be more stressful because they don’t completely understand, and even though they're trying to help sometimes it may have the opposite effect, but the intention is there, and it's good to have them there, even if it's just to drive you to a doctor's appointment. And help you understand what the doctor's talking about.

Beth Probert:                          

Michelle, I'd like to come back to you for a moment. Do you have resources that you can provide to caregivers and patients with AML, that if they do want to share their story, and is that part of what you do, as well?

Michelle Rajotte:        

Yes. That is part of the Patty Robinson First Connection program. What it is, it's trained patient volunteers and family members who've been through this, who then want to be able to reach back out and help others who are going through it now. So, that's one of the things they can do. They can volunteer at their chapters, and there's always a way to get involved that way. There are things on our website where people can share their story. There are lots of different things. On the LLS community, there's a way for them to be able to post what they’ve been through. There are blogs that we do. There are tons of different things. And as far as the caregiver, Jim, you bring up a good point, they are going through a lot of stress, as well. And they need just as much support.

And we do have a lot of good caregiver resources now. We have a caregiver workbook that we can send out that has everything you could possibly need as a caregiver to know. And it's divided into sections, so it's not overwhelming, but it’s a way to have a roadmap to try to figure out, okay, what do I do? Because just like the person who's been diagnosed, the caregiver gets thrown into this and doesn’t know, what do we do; where do we go; what questions do we ask? I don’t even know where to start.

And a lot of times that's the question we get at the IRC is, "I'm calling you, but I don’t even know why I'm calling you, because I don’t even know what I'm supposed to know." So, it's really helping people try to figure out, what is that next step? And that's really all you have to focus on. If you try to look at the big picture, it can be really overwhelming. But if you can get to the next step, that's something that's doable.

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.