Mesothelioma Support for Patients and Families
As more and more people have been diagnosed with mesothelioma and other asbestos diseases, all types of support have also become available for patients and their families. There are many medical, emotional, financial and legal issues created by a mesothelioma diagnosis in the family. It can be overwhelming learning how to cope with them all. Fortunately, help is available.
For the patient, of course, the most important thing is medical treatment. Although doctors still have not found a cure for mesothelioma, there have been many helpful medical developments to assist with pain management. Mesothelioma patients find that when they work with their physicians to control the discomfort associated with the disease, they are able to maintain a positive attitude and enjoy their lives and families to the fullest extent possible.
Mesothelioma Disease Support
Many resources are available to help patients and their families cope with emotional, financial and legal issues that also accompany the disease. Mesothelioma understandably results in stress, anxiety and a host of negative emotions for both the patient and his or her family. It is important for everyone to acknowledge these feelings and to accept support in dealing with them. Many organizations exist to offer support for patients or family members feeling depression, anger, anxiety, or loss of self esteem. Some of these groups exist as online communities found on the Internet. Local psychologists, clinical social workers, and support groups are all there to help folks sort through their feelings. Many people often find relief through relaxation therapies such as yoga, massage therapy and acupuncture.
Mesothelioma patients also feel additional stress related to financial concerns. Medical bills associated with treatment for the disease are very high. Pain medications are expensive. Just the cost of traveling to and from treatment facilities can become a financial burden.
Many families seek the help of an attorney to assist them in obtaining the compensation they need to shoulder the financial costs associated with mesothelioma. Often, the mesothelioma patient’s exposure to asbestos occurred on the job. The companies and manufacturers that caused a person’s harmful exposure to asbestos are legally responsible for their negligence and willful misconduct. By retaining a lawyer to file a legal action against those companies, patients are often able to alleviate their financial stress, which of course relieves a great deal of emotional stress as well. That way, patients are able to spend their limited energies on their health and their families.
Attorneys are also helpful for assisting with drafting a will or a power of attorney, to ensure that the patient’s wishes are met, should communication become difficult or impossible. Many patients also decide in favor of a Do-Not-Resuscitate Order, so as not to subject their families to unnecessary hardships. Your lawyer can educate you and help you with all these decisions.
Stress & Emotional Issues for the Mesothelioma Patient
There is no way to learn of a mesothelioma diagnosis without experiencing a wide swing of emotions. The patient, of course, will experience immediate and intense feelings, ranging from denial to anger, blame, fear and depression. For some patients, the stress and anxiety caused by the disease are as difficult as the physical symptoms. All of this is completely normal. Patients who acknowledge their difficult feelings and seek support for learning how to cope with them will fare the best. It’s important to prevent the onset of severe depression or even physical complications brought on by unresolved anxiety. Many patients benefit from speaking with a professional or from use of an anti-depressant or anti-anxiety medication. Patients should speak with their doctors about their state of mind, as well as the state of their physical health.
People who are confronted with a diagnosis of mesothelioma often experience a series of common emotions. These include:
- Shock, Denial, or Disbelief – It is not at all unusual for a newly diagnosed patient to feel as though he is “in a fog.” Some people are so shocked by the news that they repeatedly ask for the information to be repeated over and over. They may refuse to discuss the diagnosis or they may seem to be completely without emotion.Other patients actually refuse to believe the doctor is speaking to them. Or they protest that the doctor is simply wrong. For some, talking about the diagnosis only makes it real. Although it is important not to push such patients initially, if the denial persists, family members may have to call in a professional to help.
- Anger – Once people get over the shock of hearing that they have developed mesothelioma, a terminal cancer, they are often angry. They feel cheated out of future experiences for which they had hoped, worked and planned. Unfortunately, the anger is often directed at family and friends who are also grieving because of the diagnosis. Patients should try not to attack their loved ones unfairly and family and friends should try to remember that the mesothelioma patient may have nowhere else to direct the anger.Some mesothelioma patients question what they’ve done to “deserve” their situation and become angry with God. They wonder how God could have allowed this to happen or try to understand why God is punishing them. Religious patients may even stop attending services or question their faith. In such circumstances, it may be useful to call in a clergy person to speak with and pray with the patient.Some patients may direct the anger at themselves, wondering what they did to cause their disease. Mesothelioma patients are not to blame, however, since they did not know that the asbestos they worked around would kill them. Smoking doesn’t cause mesothelioma and neither does a poor diet or a lack of exercise. Mesothelioma patients should never blame themselves.
- Fear – It is not surprising that mesothelioma patients often experience fear. Patients are afraid of the painful symptoms caused by the disease and they are apprehensive about the sometimes multiple surgical procedures that await them. Of course they are fearful of a disease for which the cure is not yet known. The future is uncertain and that is indeed scary. For many people, the best way to conquer fear is with information. By learning as much as you can about mesothelioma and what to expect, you will at least address our natural fear of the unknown.
- Depression – Mesothelioma patients often report experiencing some sort of depression. It is critical, though, that the depression not be allowed to spiral out of control. Depression is a disease unto itself. Left untreated, depression can hinder a patient’s mesothelioma treatment and valuable time with family and friends. Sometimes, patients are able to work through their depression by speaking with psychologists or social workers. Other times, physicians are able to treat depression with medication. Under no circumstances should a mesothelioma patient refuse to admit depression or seek help for it.
Seeking Professional Help for Mesothelioma Support
Help is available, and you are only the stronger for accepting it. Most mesothelioma doctors encourage their patients to seek out professional help for sorting through their emotions. Even though family members and friends may offer their support, there are probably issues you’d rather not share with your family. It is sometimes easier to speak with a psychologist, counselor, or clergy person who has experience with helping people in your situation. Another benefit to speaking with a professional is the knowledge that your feelings and concerns will not be passed on to others. Some patients benefit from the brief use of anti-depressant drugs. This is all very common. Indeed, many insurance policies cover such visits and medications.
Many people find it helpful to combine their counseling sessions with therapies like meditation, yoga or massage. There is no set formula. Patients may need to try several techniques before finding the assistance that works for them.
- Psychologists – Your physician or oncologist can probably recommend a good licensed psychologist in your area. Many of these compassionate professionals are specialized in helping people with terminal cancer to accept and confront the difficult challenges ahead. They’ve worked with people in your situation before and know the issues you are facing.
- Psychiatrists – A psychiatrist is a medical doctor who specializes in helping people faced with personal tragedies or trauma. A psychiatrist is able to prescribe medications for stress, anxiety and depression. Sometimes a psychologist or clinical social worker will refer a patient to a psychiatrist for the purpose of obtaining helpful medications. Don’t worry if it turns out that you need such medications; many mesothelioma patients do. There is little in life more troubling than finding out you have a terminal illness. Drugs may help to control your emotions and prevent a severe bout of depression. Just make sure that you let your psychiatrist know about all the medications you are taking for other conditions. It’s important that your doctor find a medication that works well with the other drugs in your system.
- Social Workers – Your hospital likely has on staff special oncology social workers who can help you find ways to alleviate stress and anxiety. Clinical social workers may provide counseling. Other social workers may help by establishing a schedule for assisted care in your home or by arranging other useful social services.
- Clergy – Many patients facing terminal cancer turn for strength to God. It is no surprise that mesothelioma victims find solace in their faith or personal beliefs. For some, faith and spirituality provide a sense of peace and personal wellness that no other treatment affords. If you find comfort in religion, it is likely that you would benefit by contacting a clergy person about your diagnosis. For those troubled by the notion of “why me?” a pastor, priest, rabbi or other clergy person can help. The same is true for questions surrounding the end-of-life.
For mesothelioma patients who are uninterested in counseling, but nevertheless could use some help in managing their anxiety, several alternative therapies and stress reduction techniques are available. Many cancer patients combine these techniques with counseling to receive the maximum benefit from both. Ask your doctor about such methods, including meditation, yoga, massage, acupuncture and hypnosis.
- Meditation – Meditation has long been used to help all sorts of people who would benefit from relaxation and stress reduction. Many mesothelioma patients report that the therapy leaves them with a sense of serenity. With a little practice, you can practice meditation on your own whenever you need it to calm your nerves and achieve a sense of balance.
- Yoga – Yoga is another therapy that may be beneficial for patients who are physically able.
The practice of yoga began in India, as a spiritual exercise more than a physical one. Here in the U.S., yoga has been long recognized for its psychologically calming aspects. Even simple techniques can improve your state of mind and can be done easily from home.
- Massage – It is no secret that massage is a wonderful stress reliever. Massage promotes blood flow and aids in relieving muscle tension. It stimulates the nervous system, and is often used to relieve chronic pain. Unfortunately, it is unlikely that massage will be covered by insurance unless prescribed by your physician and performed by a licensed therapist. In many locations, however, affordable massage therapy can be found at schools in which massage therapists are trained.
- Acupuncture – Acupuncture has been used for centuries to alleviate anxiety, stress and depression. The practice may also generate a sense of self-confidence and well-being. The therapy is performed by using very slender needles at specific pressure points around the body. Many insurance companies provide coverage for acupuncture.
- Hypnosis – Some mesothelioma patients benefit from the practice of hypnotherapy. The therapy has become a familiar one to help people stop smoking. It also can be used effectively to alleviate the symptoms of stress. Ask your physician if you think hypnotherapy might work for you.
Online Resources for the Mesothelioma Patient
Many websites have been created to help patients and their families learn to cope with mesothelioma and other terminal cancers. Some of the sites provide medical information and others provide useful support information. Several other wonderful sites exist, but this list will help to answer many of the questions you now have. You might also contact your hospital or local United Way to find a support group near you.
American Cancer Society
The American Cancer Society site provides links to support groups in many locations around the country.
American Lung Association
Resources and support for how to cope with lung disease.
The Anderson Network is a large cancer support group of current and former patients. The patient and caregiver support line can be reached at 1-800-345-6324.
Cancer Hope Network is a non-profit organization that gives confidential support to cancer patients and their family members. The trained volunteers have all lived through a similar cancer experience. The toll free phone number is 877-HOPENET.
Clinical Trials Listing Service
Information and resources on clinical trials underway in the U.S.
Government site with current information about clinical trials.
Extensive information about many diseases from the Mayo Clinic.
Very current medical news.
The National Cancer Institute’s site offers up-to-date information on many types of cancer, including mesothelioma, information on clinical trials, and resources for cancer patients and their families.
Site maintained by the Abramson Cancer Center of the University of Pennsylvania with information on many types of cancer.
Please keep in mind that we are lawyers, not medical experts. By listing these sites, we do not intend to provide medical advice or to recommend any of the doctors, hospitals, or sites named here. We just want to offer you additional resources for learning more about mesothelioma and lung cancer.