Understanding Mesothelioma Emotional Support
When approaching a mesothelioma diagnosis, the information given to you by a medical professional can be overwhelming. Finding a way to digest and accept your or a family member’s diagnosis can be hard to process, but seeking emotional support is a crucial and necessary step. This form of emotional support can come in many different avenues, including traditional methods like therapy or mesothelioma-specific coping strategies.
Mesothelioma is a rare form of cancer that generally begins affecting the lungs and abdomen but can spread throughout the body and metastasize in advanced stages. Currently, there isn’t a cure, but there are forms of treatment to help slow down the spreading of mesothelioma, and new clinical trials are continually being developed. Mesothelioma is unique because it can infect a person but not show any signs or symptoms of infection until decades later. Therefore, a large portion of mesothelioma diagnoses happens in the later stages of life, where unfortunately, treatment options are minimal. This leaves family members and patients with the unimaginable reality of learning their chances of survival are slim. With proper mesothelioma emotional support, patients and their families can be helped to accept their grim reality and event know exactly what to say when someone dies from mesothelioma.
Mesothelioma Counseling and Therapy
Counseling and therapy are two great options for mesothelioma patients and their family members and spouses to seek out. Digesting a diagnosis and dealing with the anxiety of mesothelioma can be hard. This can also be true for families, friends, and spouses even though they don’t have the disease themselves. Mesothelioma focused counseling and therapy resources should be available near you for individual, group, or family sessions.
Therapy and counseling are often used interchangeably but are separate jobs with varying education requirements and skills. Both seek to help those to understand their feelings and find ways to promote overall mental well-being. When deciding which route to take, consider which form of therapy you are looking for. In a therapy session, the therapist and patient will discuss their feelings about their diagnosis behind closed doors over a period of time. Counseling can do the same but can also be in a group setting with family members or other mesothelioma patients. It is also typically done over a shorter amount of time since the focus is on one specific problem area.
Mesothelioma emotional support can begin with coming to terms with the fact that there isn’t a cure and life expectancies aren’t very high with this form of cancer. Counseling and therapy can bridge the gap between feeling hopeless and changing it to feeling security with one’s reality. For some, anxiety can stem from not knowing much about mesothelioma and what is to come. It can also be important for those surrounding the patient to receive these services too.
A first step in finding resources for therapy and counseling may include looking up local medical centers or hospital’s websites and seeing if they offer these services. These websites typically have a section that details the services they provide and who to contact about setting up an appointment. Your mesothelioma doctor is also a great place to start to learn about resources they may be able to put you in contact with.
Mesothelioma Support Groups
No one should have to suffer alone with their diagnosis. This is why being able to speak with people about what is happening in your life and others relating to you can be comforting. Support groups are available for so many diseases, disorders, and cancers, and can join a group of people based on their commonalities. Mesothelioma support groups provide patient resources aimed at helping people talk to others about their current diagnosis, how to manage side effects, create friendships, and more.
Finding a support group specific to mesothelioma may be difficult considering the number of people being diagnosed with mesothelioma every year is between 2,500 and 3,000 people. Regardless, there are still options for groups to join to discuss the hardships of cancer on an emotional level. Finding a group of people who can both support you on dark days and you can support them in return can create a satisfying and beneficial relationship.
Mesothelioma support groups can be either online, in person, or over the phone. There are support groups for asbestosis, mesothelioma, lung cancer, and many other forms of cancer. The following medical and care centers offer support groups:
- Moffitt Cancer Center is a medical center in Tampa, Florida, that specializes in cancer patients’ research, diagnosis, and care. One area of care they offer is in support groups for patients and their families battling cancer. They offer online and in-person sessions for family and friends, general cancer, and caregivers to take advantage of.
- Mesothelioma Applied Research Foundation is a nonprofit asbestos organization focusing solely on the end of mesothelioma through research. The foundation offers support groups for patients, caregivers, and the bereaved through platforms like Facebook, Zoom, and in-person as well. They are based in Washington, D.C., but have services available to those around the nation.
- MD Anderson Cancer Center is a medical center based in Houston, Texas. They specialize in all things cancer, including diagnosis screenings, offering clinical trials, and research into cancer. Their support group sessions are offered exclusively online for caregiver support and cancer survivorship.
- Cancer Care is a national cancer organization with the goal of supporting cancer patients and families by providing resources like counseling, therapy, and support groups. They have online or over-the-phone support group sessions for lung cancer, caregivers, and spouses. These services are provided free of cost to those who join.
- American Cancer Society is a cancer organization that aims to help people with and after their cancer diagnosis from around the nation. Their extensive programs and services include offerings for support groups. Visit their website to see a full list of all of their support groups.
- Asbestos Disease Awareness Organization (ADAO) is a nonprofit group that provides resources about asbestos and mesothelioma. Through education, advocacy, and community, they provide a network for those looking to learn more about asbestos exposure. Share your story or read about asbestos on their website to a community of people going through the same.
Mesothelioma Coping Strategies
After receiving a mesothelioma diagnosis, your doctor can give you access to resources and helpful information to make your journey as smooth as possible. These many resources may include coping strategies they suggest you implement to help your overall mental stability. Keeping a stable mental image of your future can help patients acceptance with treatments, maintain healthy relationships, and overall care. A negative mindset can create unnecessary stress on the body, further deteriorating the body. We provide a few tips for best coping with a mesothelioma diagnosis below.
1) Keep a Positive Mindset
One strategy may include the encouragement of cancer patients, and their families or caregivers, to keep a positive mindset. Although a cancer diagnosis is scary and it can be easy to feel worried and upset, try not to let your thoughts run away. Sharing thoughts that you think are individual but are actually common to your support group can help lessen feelings of loneliness.
2) Relieve Mesothelioma Stress
Managing stress as a result of constant sickness may be difficult. You may find yourself or a family member feeling overwhelmed about what mesothelioma is and what you may need to do or learn. Finding an outlet to relieve the stress, or take your mind off things, is another coping strategy to apply in your daily life. This can be done in many ways depending on your hobbies and interests. A stress-relieving activity or practice may include:
- Yoga for mindfulness, deep breathing, and relaxation
- Low-impact exercises, such as a 30-minute walk a day
- Ensuring you are sleeping a proper amount consistently
- Plan social activities with friends and family
- Enjoy the fresh air by spending time outside
- Discover art therapy (drawing, painting, pottery, etc.)
3) Manage Depression Through Relationships
It can be difficult to manage positive relationships with those around you if you begin to experience feelings of guilt, sadness, or anger toward them which could result in depression. A patient may feel guilty to those around them for potentially leaving them after they pass and knowing they will feel sadness for them. Feelings of sadness and anger may appear when the patient is upset; they could leave, and those around them may be healthy and can continue their lives after they are gone. All of these feelings can be normal to feel, but you should be open to family, friends, and caretakers about them. Having a steady group of supporters in your corner during your darkest days to improve your mindset has unlimited benefits. Those relationships can positively affect a person’s mood and allow them to take their minds off the sadness of their reality. By keeping a positive mindset, a patient can maintain good mental health, and also their body’s acceptance of treatment could improve.
Overwhelmed by a mesothelioma diagnosis? Download our free guide to learn more about the disease.
Mesothelioma Caregiver Support
As a caregiver of someone with mesothelioma, you may spend most of your time focusing on that person and begin to neglect yourself. Creating a balance between giving and receiving is important for caregivers to maintain a healthy relationship with the person they are taking care of and with themselves. It takes a lot physically and mentally to care for another person who may be dying soon. Caregivers should prepare themselves for what may be the inevitable of losing a patient by seeking the proper resources to deal with the aftermath.
In addition to mesothelioma patients finding support groups and utilizing coping strategies, mesothelioma caregivers should also consider these options. Caregivers spend their whole day, 24/7, looking after another person’s well-being, often forgetting to check in with themselves. Feelings of burnout, depression, and anxiety may be normal when taking care of a patient with terminal cancer. Familiarize yourself with the stresses and uncertainties that may occur at the end-of-life stages for the person you are caring for. If you are experiencing burnout, depression, or anxiety, seek emotional support from the following:
- National Alliance on Mental Health (NAMI) is a mental health organization group which is located in Arlington, Virginia but offers support online and in-person around the nation. NAMI recognizes the mental health concerns of caretakers and family members of those with terminal diseases and has extensive resources to support you.
- Caregiver Action Network is an organization focused on providing resources to American caregivers. Their family caretaker toolkit focuses on topics related to long-distance caregivers, new caregivers, caring by condition, and more. Each aspect of caregiving is explored for you to read and understand with a caregiver help desk if you have questions.
- Family Caregiver Alliance is based in San Francisco, California, but offers support in multiple languages for other countries. A group that focuses on giving help to caregivers to practice on their patients but also themselves. Resources include connecting caregivers together, caring by health condition, studies to participate in, and more.
- Anxiety & Depression Association of America (ADAA) mission is to prevent, treat, and cure anxiety and depression disorders. One of their avenues of support is for caretakers who are struggling mental health issues. Although they do not provide these resources in-house, they do give you the proper contacts and support to seek them out.
Palliative Care and End-of-Life Support
Palliative and end-of-life care are both forms of treatment aimed at preserving the quality of life, which typically occur in the late stages of a disease. They are different from curative treatments because their sole purpose is to manage symptoms and ease pain. With mesothelioma, it is important to manage pain early on. Pain can become hard to manage as the cancer progresses and begins to take over the body. There are palliative care options specific to mesothelioma and may give you the ability to control most symptoms.
Forms of Mesothelioma Palliative Care
Many forms of mesothelioma palliative care include pleurodesis, surgery, radiation, and other complementary therapies. Since most forms of mesothelioma develop in the lungs, undergoing pleurodesis to remove excess fluid buildup can ease the difficulty of breathing. As fluid continues to build up in the lungs, the likelihood of experiencing a collapsed lung or painful breathing increases. Removing the fluid with this procedure won’t stop the fluid from coming back, but it is a temporary solution to improve overall well-being.
Surgery can be used in palliative care or as a form of curative care if the cancer is localized or deemed otherwise appropriate by your doctor. With mesothelioma, surgery tends to be used with other forms of therapy to have the best results for pain management. A doctor may suggest undergoing either an extrapleural pneumonectomy or a pleurectomy with decortication surgery. These procedures remove infected areas such as parts of or an entire lung, the pleural lining, or the diaphragm to ease the pressure put on the chest cavity.
After surgery, a doctor may have you continue complimentary therapies, such as radiation, to further control of pain symptoms. Radiation can help treat mesothelioma and also be used as a form of palliative therapy. In palliative care, the use of radiation helps ease symptoms such as shortness of breath, chest pain, or troubling swallowing. Radiation may be administered up to 5 days a week and helps control malignant cell division by breaking up DNA in the cells.
End-of-Life Support for Caregivers, Family Members, and Patients
We urge you to seek mesothelioma emotional support when it is time to consider end-of-life support. For most, this is an area in which you may have minimal knowledge to carry out. Those with mesothelioma, caretakers, and family members should learn how they can help and support them towards the end of life. Reading about what is to come can help prepare you for life close to death after death. Information regarding these topics can be accessed with your healthcare professional’s help or online with Mesothelioma Hub’s help.
End-of-life decisions for families and caregivers that should be considered at end stages:
- Ensuring the living will and living trusts are carved out to ensure all properties, money, and other items are going to their rightful owners.
- If wanted, a do not resuscitate (DNR) order can be put into place to allow a patient to pass when they are ready.
- Creating a power of attorney who is in charge of the patient’s well-being after they no longer can.
- Deciding on a pain management and at home care plan to allow maximum comfort for patient.
- Funeral planning may be a difficult step to begin looking into, but discussing where and how the mesothelioma patient wants to be handled after they pass may be beneficial.
Additional Resources for Mesothelioma Emotional Support
No matter where you are in your cancer journey, you should seek mesothelioma emotional support to help you understand every step of the way. Taking care of your body both physically and mentally may positively impact your well-being. Finding your avenue of support can come from seeking out counseling, therapy, support groups, various coping strategies, or palliative care. Most options are available to you throughout your journey and after death for caregivers and family members.
Start a conversation to get involved with people experiencing the same challenges and begin feeling secure with your future. Maintaining a positive mindset and good mental health standing for patients, caretakers, and family members is important on your journey with mesothelioma. Our patient advocate team is ready to help you find resources to aid in your search for counseling, therapy, support groups, and other mental or physical obstacles you need assistance with.