Answering Your Questions About Our Mesothelioma Support Group
Health & Wellness
Written by Dana Nolan, MS, LMHC | Edited By Amy Edel
I’ve had the honor of facilitating our monthly online mesothelioma support group since 2013. The feedback we receive from group members is they’re very grateful for the support group. They appreciate the opportunity to talk to others with mesothelioma. Because it’s such a rare disease, it’s hard to find others with this cancer in their own community.
Our Patient Advocate team has shared with me that sometimes patients or caregivers would like to attend our support group but they’re apprehensive because they don’t know what to expect or don’t know what to say. So, I thought it would be helpful to answer some common questions people have about it., sharing my firsthand experience as the group facilitator and feedback we get from participants.
Q: What are some common topics that are discussed in your mesothelioma support group?
We don’t cover specific topics during our mesothelioma support group. Instead, we let our group members share about their personal journeys with mesothelioma and ask questions to other group members or the group facilitators. However, there are some common themes that regularly come up during our groups.
Often mesothelioma survivors and their loved ones ask how others are coping with common side effects of mesothelioma treatment like pain, shortness of breath or loss of appetite. Our group members do a great job of sharing what has worked for them when trying to manage their own or a loved one’s side effects.
Many people who are newly diagnosed with mesothelioma want to talk to someone who has undergone a specific surgical procedure like a pleurectomy or HIPEC so they have an idea of what to expect. Talking to someone who has had a similar procedure can be helpful in alleviating some of the understandable fear of the unknown.
We talk a lot about the fear and anxiety that accompanies a mesothelioma diagnosis. Our group members share with each other how they manage their feelings of uncertainty and fear.
Q: Do I have to speak or share my camera to attend your online support group?
As the group facilitator, it’s my job to make sure everybody feels comfortable in our support group. For that reason, I don’t specifically call on group members to speak. It’s also not mandatory to share your camera if you join us.
Occasionally, people are quiet because they want to get a feel for what our group is like and to hear other people’s experiences. Most of the time people who are initially quiet do end up participating because they feel more comfortable.
At the beginning of each group I spend a few minutes going over our support group rules and guidelines to help make the support group run more smoothly. I also address any technical issues that can impact our ability to communicate with each other. I do this so anyone who doesn’t feel very tech savvy feels oriented to the group online platform and more comfortable attending.
Q: How could attending your mesothelioma support group help me?
Research indicates having social support is beneficial and improves quality of life for all cancer patients including those with mesothelioma. Most people report feeling better having connected in some way with others sharing the same diagnosis and the same treatment.
Mesothelioma caregivers currently helping a loved one with mesothelioma are welcome to attend our support group. The feedback we’ve received is caregivers appreciate the forum to find out information specific to people with mesothelioma and caregivers.
I hope the information I’ve shared here will make it feel a little less overwhelming for you to join our online mesothelioma support group. If you have any questions about our group or want to register for it, please reach out to our Patient Advocates.
