Seeking Support for Mesothelioma
If you’ve been diagnosed with malignant mesothelioma, you’ll likely be preoccupied with learning about treatment options, going to doctor appointments and adjusting to your new normal. But in the midst of all this, it’s important for you and your family to seek support as well. In this emotional time, obtaining a strong support system will help you and your family come to terms with the reality of living with mesothelioma and provide a forum for you to express your feelings.
Remember that there is no shame in asking for help. Even if you feel as though you can get through this on your own, a support group can provide immeasurable benefits for you and the people in your life.
Video Summary: Nurse Amy Fair discusses what to expect after getting a diagnosis of mesothelioma. This holistic disease affects not only the victim but the family and the caretaker too. View Transcript.
The most important thing folks that have been diagnosed with mesothelioma need to do is to take one minute and one day at a time. To get a diagnosis and try to fast forward about the when’s and the what’s and the how’s of what’s going to happen next month, or in six months or a year, can be very overwhelming.
When talking with families of someone that’s been diagnosed with mesothelioma, I encourage them to first let that particular person go through the stages of the feelings that they’re going to go through with this disease.
It’s important that the caregivers stay healthy too. They need to still be able to get away. They still need to be able to surround themselves with support through their family and through their church and through their friends.
Many times, when caregivers are struggling with the change of life that they are going through with this disease, I encourage them to reach out to; if they have local support groups there some of the oncologists can refer them to some local support groups. If they do not have those resources, then I do refer them directly to a mesothelioma support group.
The clients I have work with that have made the most profound impression with me are the clients that, they just needed someone to talk to and sometimes it’s not about medical, it’s not about the side effects of chemotherapy, it’s just sharing a memory of their loved one.
I get cards from them for different occasions, and there’s always a note that says that we made a difference.
If you’re not sure where to start, begin by asking your doctor for recommendations about available support near you. The cancer center will also have resources available. Support groups can include everything from internet forums and Facebook groups to non-profits.
Advantages of Joining a Support Group
Because of how rare and aggressive mesothelioma is, it can be comforting to surround yourself with people who know what you’re going through. It can also be valuable for your family members to connect with other families experiencing the same emotions and concerns as them. For all involved, the mental health and emotional benefits are significant.
In fact, studies demonstrate that when cancer patients partake in support mediums, their quality of life and can be improved. Support groups can also lead to lower levels of anxiety and depression.
Some of the advantages a support network can offer you include:
- Advice on managing common emotions associated with cancer
- Advice on dealing with changes to your normal life
- Comfort of being part of a supportive community
- Recommendations on managing side effects from mesothelioma treatments
- Encouraging families and loved ones to communicate and speak openly about their feelings
- Encouragement and hope from mesothelioma survivors in remission
- Advice on how to maintain a healthy, fulfilling lifestyle separate from your mesothelioma diagnosis
Different Types of Support Mesothelioma Groups
Support groups are not a one-size-fits-all solution for dealing with your mesothelioma-related emotions. Different support groups may have different focuses and specializations. Some may be aimed toward emotional support and grief counseling, while others might have a focus on dealing with financial burdens from mesothelioma treatment.
Other support groups are led by cancer survivors who can stir hope and motivation in recently diagnosed patients and share stories about their path to survival. These groups can encourage patients by showing them that it is possible to outlive their prognosis.
There are additional support channels for mesothelioma patients aimed at providing assistance with the day-to-day challenges cancer presents. These types of groups can provide education about clinical trials. They sometimes offer financial support or fund transportation. Some may arrange counseling, caregiving, or physical therapy.
Online Support Groups for Mesothelioma Patients
Online support groups are a fortunate advantage in today’s digital age. Mesothelioma’s rarity may mean that it’s hard to find a specialized support group in your area. And while general cancer support groups can be incredibly valuable, it’s helpful to talk to and relate to others who have experienced mesothelioma.
Some online groups automatically connect you with a network of people. Other groups allow you to build your own support network through the creation of your own webpage, which you can use to update your friends and family about your progress and experiences.
As some patients may be located in remote areas or small communities, it can make it difficult for them to access in-person support networks. Online groups can also be beneficial for these patients to prevent feelings of isolation. Both patients in remote regions and those without a mesothelioma support network nearby can also take advantage of phone-based support.
The following organizations offer phone-based support group that can be accessed by mesothelioma patients anywhere:
| Organization Name | Phone Number |
|---|---|
| Mesothelioma Applied Research Foundation | (703) 879-3822 |
| Cancer Support Helpline | (888)-793-9355 |
| Cancer Hope Network | (908) 879-6518 |
Social Media Support for Mesothelioma
Social media is a great way to connect with mesothelioma patients, survivors and families. Less formal than an organized support group, these platforms allow users to share stories and offer encouragement and empathy to people they have never met in person.
It can be incredibly rewarding to participate in social-media-based support and can also connect you with inspiring people you may never have met or known about otherwise.
Facebook Groups for Mesothelioma Support:
- Cure Mesothelioma, by the Mesothelioma Applied Research Foundation
Mesothelioma Support Websites:
It can be encouraging to see just how many support resources are out there for you. Take some time to explore these options so that you can find the channel that offers what you need.
| Organization Name | Website |
|---|---|
| Canadian Mesothelioma Foundation | http://www.cmfonline.org/ |
| American Cancer Society (ACS) | https://www.cancer.org/treatment/support-programs-and-services.html |
| Cancer Survivors Network | https://csn.cancer.org/ |
| MyLifeLine.org | https://www.mylifeline.org/ |
| Springboard Beyond Cancer | https://survivorship.cancer.gov/ |
| Belong (App) | http://belong.life |
| CaringBridge | https://www.caringbridge.org/ |
| Cancer Support Community | https://www.cancersupportcommunity.org/ |
| WhatNext | https://www.whatnext.com/ |
| Daily Strength Discussion Boards | https://www.dailystrength.org/group/mesothelioma |
Support for Mesothelioma Caregivers
Mesothelioma caregivers should also seek out support in order to be the best caregiver possible. Caring for a mesothelioma patient can understandably be taxing, and you may feel guilty about being overwhelmed by the amount of work it can take.
But there are resources to help you manage your duties and prevent burnout. These resources can offer advice on providing quality care, managing your stress levels and emotions and patient-caregiver communication. The American Cancer Society and National Cancer Institute both offer advice for those about to become caregivers. You can also contact us for more advice on caring for a mesothelioma patient.
What to Look for When Choosing a Support Group
No matter where you go for mesothelioma support, there are certain benefits you might want to ensure a group offers. Depending on the participants, some groups may not be helpful for certain patients.
Some of the support group offerings you may want to look for include:
- Confidentiality and privacy
- Discourse rules and respectfulness in previous conversations
- That misinformation is managed and prevented
- That the phase of illness discussed applies to you if the group is specialized
Deciding What’s Right for You
It may turn out that you prefer to communicate with your friends and family rather than a larger support group. Some patients may prefer to be open about their thoughts in a smaller, more intimate setting. Others may benefit the most from one-on-one counseling. But you won’t know until you try, or at least until you explore all your options.
No matter what setting you feel most comfortable in, there is something out there for you. Everyone shares one thing in common—we all need some kind of support. What valuable support means to you may be different from what it means to other patients and families. But the first step to getting the support you need is simply reaching out.
To learn more about support options for mesothelioma patients, families, friends, and caregivers, contact Mesothelioma Hope today. Get in touch by calling us at (866) 608-8933.
