Mesothelioma support is essential for people living with this aggressive cancer. Patients and their caregivers often struggle emotionally and benefit from help in the form of therapy, counseling, and mesothelioma support groups. Financial support is also available to help cover costly treatments and other expenses.
Types of Support Available for Mesothelioma Patients
From medical care to practical assistance and end-of-life checklists, mesothelioma support comes in many forms:
Treatment and Medical Care
Treatment for mesothelioma is about more than aggressive procedures and attempting to cure cancer. Patients need quality medical support for their symptoms, treatment side effects, and more.
Medical teams provide important palliative support, the kind of care that takes into account a patient’s goals, comfort, and quality of life.
Medical care is a priority for mesothelioma patients, but it isn’t the only type of support you need. Living with cancer, especially a difficult, terminal cancer is a challenge that taxes your physical, emotional, and spiritual health. Consider all the types of support you may need as you cope with this diagnosis.
Mental Health Care
Cancer patients benefit from emotional support through professional mental health care. Any cancer diagnosis can cause significant mental distress. Mesothelioma is especially devastating becuase of the poor prognosis.
A trained therapist can help you cope with the depression, anxiety, fear, and stress you’re experiencing right now.
Another important source of support during this time is through your social network. Rely on close friends and family for practical support, like rides to appointments and household chores. You should also depend on them for emotional support and as a sounding board for how you’re feeling and the big decisions you need to make.
Loved ones are essential, but they can’t completely understand your situation. Other cancer patients can and represent an important source of emotional support. Look for online or in-person cancer and mesothelioma support groups to join.
As mesothelioma progresses, patients must face the inevitable. Terminal patients benefit from hospice care and other types of end-of-life support to make this transition a little easier.
End-of-life support is emotional and medical but also practical. You will need to make financial and legal decisions. Rely on a trusted loved one and a lawyer to help you with these steps.
Support for Caregivers
Your loved ones need support too. They may be struggling emotionally during this experience and can benefit from mental health care and counseling. Support groups and respite care are also useful for family caregivers.
Cancer care isn’t cheap. You’ll need resources and professionals to guide your financial decisions and to help you pay for treatments and other costs.
One potential aspect of financial support is taking legal action. You might want to file a lawsuit against companies responsible for your asbestos exposure and illness.
To take legal action and recover damages, you’ll need an experienced lawyer. Some firms and attorneys specialize in helping victims of asbestos exposure. They have important knowledge and experience and can give you the best advice.
How Can I Help Someone with Mesothelioma?
If you know someone with mesothelioma, you want to support them in any way you reasonably can. There are many things you can do:
- Learn more. Start by learning more about mesothelioma so you can help in ways that are well informed.
- Consider their perspective. Before offering any support, think about what it must be like for your firend or family member. Put yourself in their shoes and consider what you would want.
- Listen. Understand that you can’t solve their problem. It might not seem like much, but just being their to listen to your friend provides major benefits to their mental health.
- Check in regularly. Isolation is not unusual in someone diagnosed with a terminal cancer. Call, text, or email regularly and meet with them in person when possible.
- Ask what they need. Asking is always important. Be prepared to do whatever they need help with, whether that means walking the dog or taking them to appointments. Checking things off their list will be a big relief for your friend or family member.
- Provide distractions. Let your friend talk about whatever they want, but consider the fact that they might be tired of discussing their illness. Provide welcome distractions by talking about something else or doing things they enjoy.
- Be a friend. Most importantly, continue to treat them as your friend. Be there for them, provide help as needed, but also do what you always do. Laugh and enjoy each other’s company.
Mental Health Support as a Mesothelioma Patient
With a cancer diagnosis, you’ll find that a lot of the focus is on your physical health. The best treatment teams include emotional support.
Your mental health is likely to suffer as you try to cope with a terrible diagnosis, symptoms, major life changes, financial burdens, and more. Getting quality mental health care is essential to improving your quality of life.
Depression After a Mesothelioma Diagnosis
Mesothelioma is a terrible diagnosis. Most cases are incurable because people generally get diagnosed after cancer has reached the later stages, often after it has already spread to other parts of the body.
One of the most significant and common consequences of getting a diagnosis of any type of cancer is depression. It’s normal to feel sad over these things, but many patients develop clinical depression. Know the signs of depression:
- Persistent feelings of sadness, hopelessness, and emptiness
- Loss of interest in things you once enjoyed
- Feelings of guilt, shame, and worthlessness
- Physical symptoms like weight loss or gain, insomnia or excessive sleeping, fatigue, and aches and pains
- Difficulty concentrating and trouble making decisions
- Restlessness and agitation
Depression is treatable. Talk to your medical team if you have these symptoms or struggle to cope emotionally with your diagnosis.
Depression is common after a diagnosis, and so is anxiety. Feelings of anxiety, fear, and stress while coping with cancer are normal. Severe anxiety and worry, constantly being on edge, irritable, and angry, and persistent physical symptoms like tense muscles and trembling are not.
You may even develop panic attacks. Panic attacks cause:
- Chest pains
- A racing heartbeat
- Tingling sensations in the limbs
- Shortness of breath
- Choking sensation
- A feeling of being overwhelmed or under attack
As with depression, feelings of anxiety, fear, and panic can and should be addressed. Treatments and support can help relieve these uncomfortable feelings and decrease or eliminate panic attacks. If you struggle to keep anxiety under control, see your doctor about therapy or medication.
How to Get Therapy for Mesothelioma Patients
If you or your loved one with mesothelioma is suffering emotionally, professional support can help. Professional therapists who specialize in treating cancer patients can help you process and manage difficult feelings.
Even patients who do not qualify for an official diagnosis of anxiety disorder or depression can benefit from therapy. In fact, research has shown that therapy for cancer patients improves the quality of life and even boosts the immune system, leading to a better overall outcome.
How Can I Find a Support Group Near Me?
You can find professional support through your medical team. They can recommend trained and experienced cancer counselors. You may also want to seek out peer support in your area.
Support groups are powerful tools for coping with the emotional upheaval of a diagnosis of mesothelioma. A support group provides a safe place to talk about your feelings and experiences with people who understand.
Start with your medical team or search online for a local group that meets your needs to find a support group.
A local search is important for finding a support group that you can actually meet with in person. Nationwide and regional online groups can also be helpful and can lead you to more local meetings:
- Mesothelioma Applied Research Foundation (MARF): By registering with MARF for free, mesothelioma patients and caregivers can access their online support groups. Some of these are private Facebook groups, such as Mesothelioma Warriors Survivors and Mesothelioma Caregiver Conversations, but Cure Mesothelioma is a group that is open to anyone. MARF also offers phone support.
- Canadian Mesothelioma Foundation (CMF): Patients and caregivers in Canada can join CMF’s Mesothelioma Patient Support Network. This group offers a searchable database of resources for financial aid, legal help, medical centers, and of course, emotional support groups.
- Cancer Hope Network: The Cancer Hope Network offers a unique type of support service for anyone living with mesothelioma or another type of cancer. Patients or caregivers can contact the group and be matched with support volunteers. The volunteers are former patients, caregivers, or people who lost a loved one to cancer.
- American Cancer Society: The ACS has a searchable database online that patients and caregivers can use to find a local support group. This is a great option for anyone interested in face-to-face cancer support groups.
- Cancer Support Community: This group offers cancer patients and their loved ones a program called MyLifeLine. By joining and registering patients get an online platform to share information with loved ones and to create and gather a supportive group of people online. The Cancer Support Community also links to regional and local face-to-face cancer support groups.
- Cancer Care Lung Cancer Patient Support Group: This organization offers an online support group for patients living with lung cancer. The group is led by an experienced oncology social worker and there is also a group for caregivers of patients with lung cancer.
For further assistance locating a mesothelioma support group in your area, please fill out the contact form on this page for your free Mesothelioma Information Packet. Or call us at 1-800-692-8608, and we can quickly assist you.
Caregivers and Assisted Living
Support for mesothelioma is not just about emotional support. Many patients also need practical and physical help. This kind of support may include a caregiver who comes into the home to help out. Or, it may mean moving into a facility that provides round-the-clock support.
A caregiver is someone hired to come to a patient’s home, but it could also be a family member or friend. Caregivers provide all kinds of support, including doing chores around the house. They may also provide physical support to the patient, helping them dress, bathe, and use the bathroom. A medically-trained caregiver can also help with medicines and IV fluids.
When it becomes more difficult for a patient to live in the home, or when the cost is too much, assisted living is a good option for support. These facilities provide all practical needs like meals and laundry, but they can also provide medical and physical support, often twenty-four hours a day.
Caregiver needs often get overlooked when patient needs are so great. Many families provide support for their sick loved ones, either out of a sense of obligation and love or to keep costs down. Family caregivers can get burned out easily. They benefit from support too.
Being a caregiver for a sick loved one is demanding. Caregivers benefit from support groups and from getting help from other friends and family members. Caregiving without adequate support can cause depression and anxiety, even poor physical health.
When more than one person shares the caregiver role, the burden is lowered for each caregiver. Caregivers need to speak up and talk about the challenges of their role and the help they need. There are many resources and support groups for caregivers:
- American Cancer Society. The ACS supports family, friends, and caregivers with online resources, informational videos, and more.
- Family Caregiver Alliance. FCA connects caregivers for mutual support and hosts support groups and provides resources.
- Caregiver Action Network. This group provides resources, chat support groups, and tools to help caregivers care for their loved ones and themselves.
- Mesothelioma Applied Research Foundation. MARF supports patients and caregivers. They have several Facebook and telephone-based support groups you can join.
- CancerCare. This group offers numerous online support groups, including several chat forums for caregivers.
- Friend for Life. This is a unique group made up of volunteers who are either caregivers or cancer survivors. They connect with patients or caregivers needing support through their journey.
In addition to professional therapy and support groups, caregivers benefit from regular self-care: getting enough sleep, exercise, and healthy foods, using stress-reducing techniques like meditation, and taking time off from duties.
Making Financial and Legal Decisions
Many patients and their caregivers face the stress of financial burdens. Being sick is expensive. Insurance doesn’t always cover all costs of care, and working may not be an option.
Financial support is an important part of coping with mesothelioma. Financial assistance and resources for medical bills, travel costs, lost wages, and other expenses are available:
- Charity organizations
- Government assistance
- Assistance for veterans through the VA
- Lawsuits against companies negligent for asbestos exposure
- Asbestos trust funds set up by those companies
Hospice and End-of-Life Support
Hospice care is an important type of support for many patients nearing the end of life. Hospice offers emotional, spiritual, social, and medical support as a person enters the final stages of life.
Decisions about end-of-life matters are difficult, but they can actually help the patient feel better. Knowing what will happen to money, possessions, pets, and dependents typically gives patients a sense of peace.
People who can provide support in making these difficult decisions include lawyers, doctors, and caregivers. Family members should also be involved to be supportive and to lessen the burden of making such important decisions.
Also important toward the end of life is palliative care. This is medical treatment with the goal of making the patient feel better, not curing the cancer. Pain relief is a major part of palliative care that improves patient quality of life during this time.
If you are living with a mesothelioma diagnosis, getting support should be a top priority. You need the love and support of family and friends; you need a good medical team and caregiver; you also need the support of all the professionals who can help you make important decisions. If you are the loved one of someone with mesothelioma, you too need support. Don’t forget about your needs throughout this process.Get Your FREE Mesothelioma Packet
Page Edited by Patient Advocate Dave Foster
Dave has been a mesothelioma Patient Advocate for over 10 years. He consistently attends all major national and international mesothelioma meetings. In doing so, he is able to stay on top of the latest treatments, clinical trials, and research results. He also personally meets with mesothelioma patients and their families and connects them with the best medical specialists and legal representatives available.