Mesothelioma Webinar Support Group

Care Support Coordinator: Jennifer Paul

Not just online support and information, but featuring a weekly live interactive support group for the emotional traumas of the disease. Due to the rarity of the cancer, in person support groups are scarce. Online group support increases the opportunities to reach individuals and families all over the nation who are effected, and can be helpful for those who are home-bound or hospital bound, have limited free time to attend meetings, don’t have access to a nearby group, etc. It is difficult to remember to care for oneself while trying to manage the constant appointments, bills, and worries. Even when the medical and legal aspects are being appropriately handled, the disease results in emotional consequences – MesoRFA understands this, and cares about enhancing the mental health and quality of life of those affected.

Facilitator knowledgeable about the disease and its effects, and has been intimately connected with the Mesothelioma Research Foundation of America (supports medical research for finding a cure) for years – access to medical and legal experts and co founders of MRFA, Dr. Gill and attorney Jerry Neil Paul

Facilitator trained specifically to provide support to individuals, couples, families, groups; Masters in Clinical Psychology with an emphasis in marriage and family therapy with years of clinical experience; not currently licensed due to pursuit of doctoral degree in psychology

 How to begin?

The main live online group is the starting point for getting support and information resources.

Depending on a particular individual’s struggle, the facilitator will assign the person to a relevant subgroup to provide more focused support around specific issues of dealing with the mesothelioma disease or caring for a loved one with the disease

Main Live Online Group Support & Information Resources

Mesothelioma Cancer
General Support Group

PURPOSE & CONTENT: A place for people to give and receive both emotional and practical support and interaction (share medical information, treatments, clinical trials, most cutting edge research findings, normalize feelings, let off steam, educate others, public policy information, legal resources)

STRUCTURE: Regardless of whether one was just diagnosed with Mesothelioma, or has been dealing with it’s effects for years, this group provides support, information, and resources delivered through the expert moderator as well as peers who can relate intimately with the experience.

  • Weekly small support group live (no more than 8 at a time not including facilitator) led by MesoRFA Care Support Coordinator for dealing with the emotional aspects of struggling with a rare cancer – particular day and time to sign in for a one hour session. Here is an opportunity to get to know and connect with others effected through personal stories and experiences shared in a trustworthy and private environment.
  1. Depending on particular individual’s struggle, facilitator will assign to a relevant subgroup to provide more focused support around specific issues of dealing with the disease or caring for a loved one with the disease
  • Posted materials, information, resources for members to read on their own time (Bulletin board?) – MesoRFA website, current press release and trend reports, symptoms and treatment, videos, inspirational quotes and stories
  • Question and Answer form (either sent to facilitator to answer or linked to Ask Dr. Gill)

Patient Support

Mesothelioma Cancer
Patient's Support Group

  • Live online weekly patient specific group. There are some things that only those who have received the diagnosis experience; this is a chance for patients to connect and relate with other patients. A place to divulge fears, pain, realizations and finding meaning, existential concerns, discomfort accepting the necessary help from a caregiver, etc. Facilitator guided relaxation exercises and tools.
  • Possible posting space specific to patients; place for patients to provide ongoing support to one another.

Caregiver Support

Mesothelioma Cancer
Caregivers and Family Members 
Support Group
  • Live online weekly group for caregivers and family. Sometimes those caring for a loved one effected by the disease need a place to vent about the difficulties and connect with other caregivers who are experiencing similar stressors without the guilt that they are burdening their loved one, the patient. This helps prevent resentment and provides an opportunity for connection in times that can feel lonely. Facilitator guided relaxation exercises and tools.
  • Posting space for caregivers and family; place for caregivers to provide ongoing support to one another and to encourage and post ideas for self-care and “small things I can do for myself.” It is difficult to take care of another when you’re not taking care of yourself. This is easy to forget and not always prioritized with the value it holds. Once a loved one is diagnosed, caregivers go through a period of adjustment into this role, and it is a constant struggle to maintain positive.