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Coping with mesothelioma

A diagnosis of mesothelioma may well be the most difficult news you'll ever have to deal with. The years you had ahead of you have suddenly narrowed to simply dealing with the day-to-day realities of being sick - and not just any sick. Sick with a disease that is very probably someone else's fault, and that isn't going to go away.

You've been a strong, hard-working person all your life, and suddenly you find yourself faced with a killer. How do you face it? First, give yourself permission to feel scared and vulnerable. Recognize that no matter how tough you are, you will need to lean on those around you for support, and it's okay to do that. You've spent your life taking care of others, and it's okay to let them take care of you now.

The good news is, there are resources, information, assistance and coping strategies that can make dealing with mesothelioma easier on both you and your family.

Dealing with feelings

Start by realizing that whatever you're feeling, it's normal. Everyone reacts differently to the news that they have mesothelioma. Some of the emotions you may go through are:
  • Disbelief
    No one is ever ready to hear the doctor tell them that they have cancer. When the diagnosis is mesothelioma, that disbelief may be even more profound. You may have never heard the word before, or you may not even realize that you'd been exposed to the asbestos fibers that cause the cancer. It's very common to feel that "this can't be happening to me."
  • Fear of pain, illness, or abandonment
    Support groups and individual counseling are excellent ways to deal with the fears and uncertainty that a life-threatening diagnosis brings with it. While there may not be a local support group dealing specifically with mesothelioma, you'll find many cancer support groups where you can get information and share your feelings with others in similar situations.
  • Anxiety over finances, treatment options, the future
    Uncertainty over the future brings anxiety with it. The best way to overcome anxiety, and the feeling of helplessness that often comes with it, is with action. Learn what resources are available to help your family financially, physically and emotionally.
  • Guilt about your role in your disease
    It's easy to get caught up in blaming yourself for not seeking medical help sooner, or making poor decisions about your health. Know that mesothelioma is not your fault, and that your best defense against guilt is information. Inform yourself about how you were exposed and what legal recourse you may have against those who are truly at fault.
  • Depression, hopelessness and grief
    Depression is not just an emotional problem - it's also a physical side effect of cancer. Pay attention for the signs of depression, and get help through counseling, medication or alternative therapies.
  • Anger at the world, God, and/or your employers
    With this disease, anger makes sense. You have been wronged by companies that put their profits ahead of your health and your family's well-being. Taking action by filing suit against the companies that have caused your illness may bring some satisfaction. Also, write to Congress and ask them to fund more research for mesothelioma.
None of these feelings are wrong. You have to give yourself the right to experience your feelings and to share them with others.

Sometimes just watching a funny movie or reading a joke book can help cheer you up. Other days, it may seem like nothing can help, which is why it's important to know there are people you can talk to. See the resources section below.

Educate yourself

The most important thing you can do for yourself is to learn all that you can, not only about the disease itself, but about everything to do with its cause and treatment. Ask your doctor to explain about the disease, your prognosis, and the treatment he recommends. Find out about new treatments, and the availability of clinical trials with new medications and experimental therapies. The more you know, the more able you'll be to make informed decisions about your treatment. Studies have invariably shown that informed patients who take an active role in their own treatment decisions respond better to all forms of treatment than those who are passive.

If your doctor is not a specialist in mesothelioma, ask for a referral to a doctor who is. For many reasons, it's important that the doctor treating you understand the disease thoroughly. A specialist will know about the latest treatment options and which are most appropriate for your stage of the disease. If you choose to pursue legal action to recover damages to provide for your medical care and for your family, a specialist will be aware of the importance of a proper diagnosis.

Keep a running list of questions that you have about your condition and treatments, and take that list with you to doctors' appointments so you don't forget to ask them. And take notes when he's talking to you about treatment options - or, if it's all right with him, record it. That way you're not relying on your memory, or forgetting something that seemed insignificant at the time.

Take care of yourself

Eating well, staying as physically active as possible and getting the rest that you need can help you fight off the fatigue and stress that comes along with mesothelioma. Maintaining your health may seem futile, but, by taking care of yourself, you're helping your body fight off other illnesses, like colds and flu, that would only add to the burden it is under. In addition, your physical stamina and health, aside from the mesothelioma, may determine what treatments are available for you.

Pain management is another part of taking care of yourself. In addition to medication for pain, there are many alternative therapies that can bring relief. These include massage, biofeedback, exercise, meditation and physical therapy.

Try to maintain your weight. Losing weight is a common side effect of both mesothelioma and the medicines used to treat it. Ask to see a nutritional counselor who can help you plan meals and snacks, and recommend strategies for maintaining your weight.

Use the resources that are available to you.

The dedicated mesothelioma attorneys and the trusts and estates attorneys at Williams Kherkher can help you with your legal options. And in addition to your medical team, there are many agencies that can help you address the spiritual and emotional issues that everyone with malignant mesothelioma, from the toughest guy to the frailest patient, inevitably faces. Just as we are there to help you through every step of the legal process, there are many others out there who will help you as well. You and your loved ones are not alone.

One of the most valuable resources that may be available to you is a case worker or case manager. Many HMO's and hospitals have case managers whose job it is to help coordinate and find services for patients with chronic diseases. If a case manager service is available to you, take full advantage of it.

Financial assistance
Medicare, Medicaid and private insurance may cover many of the medical costs for mesothelioma patients. But even when medical costs are covered by insurance, co-pays and other out-of-pocket financial costs can seem overwhelming.

For all those with mesothelioma, whether you have medical insurance or not, there are private and public resources available to help.

Remember, you have to be an advocate for yourself, and you should never be embarrassed to seek assistance. The high financial costs of coping with cancer - especially mesothelioma cancer - are far beyond the means of the average hard-working person. There are programs designed to help patients like you - men and women who've worked hard all their lives and are now disabled by a devastating disease.

The American Cancer Society, Cancer Care and a host of other national and local foundations and religious organizations can help with everything from finding someone to drive you to doctors' appointments, to help filling out forms so you can receive the assistance you're entitled to, to providing specific financial assistance.

You don't always have to be in dire financial need to receive some forms of assistance; there are many options for people who need assistance with travel and lodging costs.

The National Cancer Institute (NCI) also provides a list of agencies that can help mesothelioma cancer patients find financial assistance.

Emotional support
Discussing your feelings with your family and friends can help, but sometimes you may feel that it's hard for them to understand what you're going through. There are probably support groups in your area for people with cancer. You can ask your doctor, a social worker, or check with the American Cancer Society or similar agencies to see if they can direct you to a support group. Groups can meet in person, or on the phone - or even on the Internet. By joining a support group, you can learn ways to cope from others who share similar experiences, help share what you've learned with others, and, perhaps most important, recognize that you are not alone.

If you'd rather meet with someone one-on-one, oncology social workers, psychologists, psychiatrists and counselors can often help. Spiritual guidance from a clergy member can also help many people find meaning in their lives and in their illness.

The NCI provides a publication which discusses support groups in detail. They also provide information to help you find a support group in your area, as well as numerous other publications dealing with everything from pain management to nutrition to finding spiritual guidance.

Legal counsel
Talk to an attorney experienced in asbestos litigation to determine whether you may have legal recourse to recover for your injuries. Research has shown that the asbestos industry was aware of the potential dangers from the use of its products for many years but failed to warn employers and employees of the risks. As a result, the industry is often held liable for the damages experienced by injured workers. Your lawyer can advise you as to whether you may have a valid claim for damages to offset your financial losses due to medical costs and missed work and to compensate you for your pain and suffering. Williams Kherkher Law Firm has the experience and resources needed to help you with this complicated process.

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