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Mesothelioma is an aggressive and most often deadly kind of cancer. Getting a diagnosis and then living with this illness is difficult both physically and emotionally. Care and support for patients living with mesothelioma must go beyond standard medical treatment. People with cancer often suffer from anxiety, depression, and fear. They struggle with side effects of treatment and they have difficult decisions to make.
Patients are not the only ones who need support in the wake of a mesothelioma diagnosis. Family and friends may also be struggling to come to terms with the illness and a loved one’s suffering. Caregivers of those that are sick face a tough road ahead. On top of all the physical and emotional repercussions of living with mesothelioma, many patients and their caregivers also face financial difficulties. Getting support of all kinds, for everyone involved, is crucial in coping with this terrible disease.
Depression after a Mesothelioma Diagnosis
For the person diagnosed with mesothelioma, the emotional consequences are usually immediate and lasting. This is a type of cancer, most often caused by prolonged exposure to asbestos, that is aggressive and usually a death sentence. The majority of cases are incurable because people generally get diagnosed after it has reached the later stages, often after it has already spread to other parts of the body. The prognosis is not often good.
One of the most significant and common consequences of getting a diagnosis of any type of cancer is depression. This diagnosis is life-changing, it raises uncomfortable questions about the future, and it forces people to come to grips with saying good-bye to dreams and actually dying. It’s normal to feel sad over these things, but many patients may develop clinical depression.
Clinical depression is characterized by persistent feelings of sadness, hopelessness, and emptiness. It causes you to lose interest in things you once enjoyed and feelings of guilt, shame, and worthlessness. Depression also causes physical symptoms like weight loss or gain, insomnia or excessive sleeping, and fatigue. If you are clinically depressed you may have difficulty concentrating and trouble making decisions, and you may feel restless or agitated. It is important to address depression because there are effective ways to treat it alongside your cancer.
Anxiety after Diagnosis
Many patients receiving a diagnosis of mesothelioma are also likely to feel anxiety, fear, and stress. As with depression, these feelings are normal, but they can become extreme and even lead to panic attacks. Signs of severe anxiety include constant fear and worrying, tense muscles, persistent stress, difficulty focusing and completing tasks, feeling restless or on edge, feeling irritable and angry, shaking, trembling, and having a dry mouth.
Panic attacks are characterized by physical signs like chest pains, a racing heartbeat, sweating, trembling, chills, tingling sensations in the limbs, numbness, dizziness, shortness of breath, and a choking sensation. It may also make you feel like you have to escape, like you are being overwhelmed, or that you are detached or not real. 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.
Therapy for Patients
Having mesothelioma may cause feelings of depression, anxiety, and fear that range from mild, moderate, and normal, to severe and overwhelming. To whatever degree you or your loved one with mesothelioma is suffering, professional support can help. Not addressing these feelings will only make them worse. There are professional therapists available to help, including those who specialize in working with cancer patients.
Even patients who do not qualify for an official diagnosis of anxiety disorder or depression can benefit from the support that therapy provides. Being diagnosed with mesothelioma is upsetting and working with a therapist is a great way to help you cope. In fact, research has shown that therapy for cancer patients helps them to experience a better quality of life and even boosts the immune system and leads to a better overall outcome.
Another way to cope with the emotional upheaval of a diagnosis of mesothelioma is to meet with other people going through something similar. Support groups are powerful in that they provide you with a safe place to talk about your feelings and everything else related to your illness, and they are made up of people who are like you, who understand you your experiences. That kind of support is something you can’t get from your friends and family, or even a therapist, no matter how much they care or try to understand.
You can find mesothelioma or general cancer support groups to join either in person or online. Your medical team is a great place to start for resources, but you can also search online for a group that works for you. This kind of support is invaluable and one of the best ways to cope with having mesothelioma. A local search is important for finding a support group that you can actually meet with in person, but nationwide and regional online and phone 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 for mobility and other needs. This kind of support may be 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 like cleaning, cooking, and running errands. They may also provide physical support to the patient like helping them dress, bathe, and use the bathroom. A medically-trained caregiver can also help with medicines, IV fluids, and other needs.
When it becomes more difficult for a patient to live in the home, or when the cost of having a nurse or other medical professional in the home is cost prohibitive, assisted living is a good option for support. These facilities provide all practical needs like meals and laundry, but they also provide the medical and physical support that mesothelioma patients need and that care is available 24 hours a day.
Caregiver needs are often overlooked when patient needs are so great. But they also need support. Many families provide support for their sick loved ones, either out of a sense of obligation and love or because of the expense of hiring professionals. These caregivers may love their patients, but they can also get burned out easily, and they need help sometimes.
Being a caregiver for a sick loved one is particularly demanding. It can cause depression and anxiety, and it impacts physical health. Caregivers can benefit from support groups and from getting help from other friends and family members. When the caregiver role is shared by more than one person, the burden is lowered for each caregiver. Caregivers need to speak up and talk about the challenges of their role and how it makes them feel. As with the patient, bottling up these feelings is damaging.
Caregivers can take care of themselves by seeking professional support, support groups, and help from other loved ones. They can also take other positive steps, like getting enough sleep, exercise, and healthy foods, by using stress-reducing techniques like meditation, and by taking time off from the duties of caregiving.
As if living with a mesothelioma diagnosis weren’t tough enough, many patients and their caregivers also face the stress of financial burdens. Being sick is expensive. Insurance doesn’t always cover all costs of care and being sick often means being unable to work and earn a living. Caregivers may also need to stop working in order to support a sick family member.
Financial support is an important part of coping with mesothelioma. Consider the following types of resources when looking for financial assistance for medical bills, travel costs, lost wages, and other expenses:
- 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 Decisions
When a patient with mesothelioma has reached a point at which treatment is no longer helping, he or she, along with loved ones, have some difficult decisions to make. These include whether to continue with aggressive treatments or to use treatment only for palliative care. There are also choices regarding hospice care, as well as all the legal choices that come with a terminal illness.
Hospice care is an important type of support for many patients nearing the ends of their lives. It provides a safe place to live where the comfort of the patient is the top priority. 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 at this point, but they can actually help the patient feel better. Knowing what will happen to money, possessions, pets, and any dependents typically gives patients a sense of peace. It isn’t easy to make these decisions, but it is important. People who can provide support in making them include lawyers, doctors, and caregivers. Family members should also be involved to be supportive and to lessen the burden of making such important decisions.
If you are living with a mesothelioma diagnosis, getting support should be a top priority. You cannot face this alone. You need the love and support of family and friends; you need the support of a good medical team and caregiver; you also need the support of all the professionals that 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.
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.