Dr. Shubham Pant, Taylor Bell Duck, and Richard Dickens, MS, LCSW-R discuss the importance of support groups, including advocacy organizations. [Merck Sponsored]
PUBLISHED August 01, 2018
Shubham Pant, MD: Tell me Taylor, you know when you get a cancer diagnosis you’ve got to have a lot of people around you to help you through the cancer diagnosis. Just tell me what impact did your support network have on your cancer journey.
Taylor Bell Duck: Well a huge, huge impact. So you know I think something that was really unique for me was that my friends and family still tried to do things that they knew were important to me or things that I loved. So one thing that happened was is that everybody knows that I love a type of chip.
Shubham Pant, MD: A type of chip?
Taylor Bell Duck: Yes.
Shubham Pant, MD: Like a Pringles chips?
Taylor Bell Duck: Yes. Doritos.
Shubham Pant, MD: Which ones?
Taylor Bell Duck: Cool Ranch. And, in moderation. But they would, I actually left the hospital with 17 bags of Blue Doritos because everybody, they didn’t talk or know that they were doing that, but everybody that came to visit brought that as kind of a gift. Another thing that I think was really unique is that my mom found somebody in the hospital that was offering a ministry basically to come and wash my hair. And so I had really long platinum blonde hair and it was like a bird’s nest. And so it was just matted from not being able to get up and walk and brush it. And so this man came to bedside and washed my hair for me. And that just was such a blessing for me because it made me feel better. And something as small as that that somebody in my family thought would be helpful for me was such a gift and a blessing. So I think finding small things like that that seemed like not really a big deal but really showed the patient that they care, that was important for me.
Shubham Pant, MD: And then your sister was very important to your support network, right? So what was your kind of conversation with her? How did she help you, get you through, not that I want you to choose who’s your favorite, brother or sister necessarily?
Taylor Bell Duck: No, no, no.
Shubham Pant, MD: But how did she help you, you know, walk you through your, you know, help you, support you through your cancer journey.
Taylor Bell Duck: Yeah. So we call her my empathy buddy. So any time I was feeling down, she felt down with me. So if I was having a bad day, she’d get in the bed with me and have a bad with me. And she had done a lot of research about patients that are going through this and one of the things that she had found was that oftentimes patients can feel very isolated and alone. And so she just made it a point to make sure that at no point in time did I ever feel alone. And so that was really incredible.
Shubham Pant, MD: Empathy buddy, that’s amazing.
Taylor Bell Duck: Yes.
Shubham Pant, MD: Is that, Richard, is that a normal term? What do you use? And tell me about how important is it to bring to bring the support team like this?
Richard Dickens, MS, LCSW-R: Yeah, and Taylor has a lot of great tools already and empathy buddy is something I’m going to use in the future when I work with people. Building tools goes back to, or supports, goes back to communication I’m going to say. And communication almost always starts in the home. And recognizing that a healthy dose of denial is not inappropriate for many people. And there’s a time that then the emotional ramifications of what they’re going through comes to the surface. Is as a social worker a lot of times we identify right away that although one person gets cancer, their whole social and family and work network is affected by it to varying degrees?
So to the degree, and one that people always have control over who they share it with and who they don’t, and in multicultural societies I’m very sensitive to the fact that some people come from societies that you don’t share it. And there’s other reasons for not. But all the literature, all the studies for the most part suggest that opening it up, starting with your family, even young children age appropriate, five and six-year olds don’t need to know it’s cancer, but they need to know that mom or dad or sister is sick. And within that you also open the opportunity for people to be honest and ask questions, and then that extends beyond definitely with your healthcare team. You could role model that with the healthcare team. So building communication helps you really build a solid network.
Shubham Pant, MD: So you have support groups right there, circles. First there’s your friends and family, immediate friends and family. So what other support groups can be there for patients to use, Richard? What do you help them with? Like outside the immediate friends and family, what other, you know? Do you tell them to engage with their healthcare provider, what other, you know, what do you tell your patients?
Richard Dickens, MS, LCSW-R: Sure, very important. Organizations like CancerCare, and there’s a number of them out there, either have patient’s navigators or nurses or social workers are often doing patient navigating. We run online face-to-face and telephone groups and many organizations do. Especially in this day and age, one, that cancer’s become a chronic illness, so that people are often very busy, and in my patient groups the biggest complaint in the last five years has been, “Everybody I talk to doesn’t believe I have cancer because I look so normal.” So groups really give them the place to talk to people who actually understand what they’re going through.
I don’t care how loving their family is, their family can’t completely understand what it’s like to be fatigued. Even in a general patient group you all, I always say when people say well they have a worse cancer, they have a harder cancer or their treatment’s worse, I say, you all heard the words, “You have cancer,” and those three words are going to change your life and your perception on life from mortality to health to opportunities and all of those things. And across that, that’s what’s helpful.
And sometimes people don’t want to get into a group, they don’t want to hear a lot of other stories, but they want to talk to somebody else who has a similar cancer and how did they get through it.
Shubham Pant, MD: Taylor, did you ever reach out, or would you recommend then now going through your experience, if they did not reach out, would you recommend patients to now reach out to groups?
Taylor Bell Duck: Yes. So I did try to connect with people, but unfortunately there wasn’t a whole lot of people my age that had been through what I’ve been through. So every time I connected it was always with somebody a little bit older. And I felt a lot of my issues were related to.....
Shubham Pant, MD: Spring break ..... you know?
Taylor Bell Duck: Yeah, yeah .... like age.
Taylor Bell Duck: Right. and not necessarily unique to just my diagnosis. So I did try to connect. But I absolutely think that it’s important that patients seek out resources and education. And that’s why you know Your Cancer Game Plan is such a great kind of portal is because it gives tips of how to communicate, when to communicate, and put patients in touch with other resources that might help them along the way.
Shubham Pant, MD: So that would be other patients, other support groups, just other online resources?
Taylor Bell Duck: Yes, absolutely.
Richard Dickens, MS, LCSW-R: Could I say, too, just to build on what Taylor said, we cover all cancers and all ages, and cancer still is overwhelmingly a disease of older age, over 60. And as Taylor said, and being on the edge of young adults, isolation is one of the hardest things that any of them deal with because their peers, it’s very hard to find peers who understand or go through it or even dealing with the healthcare system. So it’s a bigger issue.