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Chapter 5: Living With Mesothelioma

There’s no cure for mesothelioma, and the treatments discussed in Chapter 4 are aimed at either slowing the progress of the disease or relieving its symptoms. Coping with the diagnosis and the disease will take a toll on both your physical and emotional health, and your family and friends will feel its effects, too.

This chapter offers some tips for living with mesothelioma and keeping your quality of life as high as possible while you cope with the physical and emotional strains of the disease.

Taking Care of Your Physical Health

As with any other serious illness, mesothelioma (and other asbestos-related diseases) weakens your body and makes it difficult to do regular activities. In addition, the treatment you undergo has significant effects on your physical well-being.

In many cases, and especially in the early stages of the disease, diet, exercise, and relaxation techniques can help your body cope with the disease and the effects of your treatment—and thus make you feel better. The following sections explore these aspects of physical well-being in more detail.

Diet and Nutrition

Your appetite may be affected both by the disease and by your treatment. But getting enough food – and the right kind – is a key component in helping you feel better. Good nutrition helps your body fight infection and the side effects of your treatment, and eating well helps you maintain a healthy weight.

Different kinds of food provide different benefits for your physical health:

  • Protein repairs tissues damaged by surgery, chemotherapy, and radiation. Protein also boosts your immune system and provides essential nutrients for cell and tissue growth. High-protein foods include beef, pork, chicken, and fish; cheese and other dairy products like milk, cottage cheese, and yogurt; nuts, seeds, and wheat germ; eggs; peanut butter; beans, peas, and tofu.
  • Fats and carbohydrates provide energy to fuel your body. Although healthy individuals are generally advised to limit their fat and carb intake, cancer patients often need more of these kinds of foods to counter both their disease and the effects of their treatment. Fats are found in dairy products like butter, whole milk, buttermilk, and full-fat cheese, as well as some meats and products like peanut butter. High- carbohydrate foods include breads, pasta, and potatoes.
  • Vitamins and minerals help your body digest food and absorb and use the nutrients in the food you eat. Depending on your overall health and diet, your doctor may recommend that you take a multivitamin or specific vitamin and mineral supplements to ensure your body gets the nutrition it needs.
  • Water keeps your body hydrated, which in turn helps ensure that your body can use the nutrients you take in. Talk to your doctor about how much water you should drink each day.

Here are some good online resources about nutrition:

You also may want to check out two books from the American Cancer Society: American Cancer Society Complete Guide to Complementary and Alternative Therapies and American Cancer Society Complete Guide to Nutrition for Cancer Survivors. Both are available from online booksellers.

Your doctor may prescribe a specific diet for you, and it’s important to follow your doctor’s instructions. After surgery, chemotherapy, or radiation treatments, for example, your doctor may want you to restrict or avoid certain foods while your body recovers from the treatment.

Exercise and Relaxation

Several studies have shown that cancer patients who exercise feel better physically and emotionally. Exercise improves lung function, muscle strength, flexibility, and energy levels, and it releases chemicals in the brain called endorphins that help boost your mood and even can help you sleep better. Exercise also can help ease common side effects of cancer treatment, including nausea, fatigue, and diarrhea.

Yoga is often recommended for cancer patients because it combines low-impact physical movement with relaxation techniques. Many fitness centers offer regular yoga classes. You also may be able to practice yoga at home, either on your own or following a yoga DVD or video, as long as you have a quiet and comfortable place to do the breathing, stretching, and meditation exercises.

Your ability to do physical activity may be hampered by your disease, your overall health, and your treatment. Talk with your doctor about what kind of exercise is appropriate for your situation and how much exercise you should try to get every day or week. Also discuss whether you should participate in supervised exercise in a setting such as a rehab clinic or whether you can exercise on your own – via daily walks or swimming, for example.

Pain Management

Dealing with pain from your disease or your treatment is one of the biggest challenges in maintaining and managing your quality of life. Your doctor may prescribe over-the-counter pain relievers such as aspirin, acetaminophen (the active ingredient in Tylenol), or ibuprofen. Prescription pain relievers typically are designed for short-term pain relief, such as immediately following surgery.

All pain relievers, including over-the-counter medications, can have negative effects on your kidneys, liver, and blood. Depending on what other medications you take and any other health issues you have, your doctor may limit your use of these drugs.

Stretching and other forms of exercise may help with pain management (see the preceding section). Talk with your doctor before you start any exercise regimen, and be sure your doctor is aware of both the kind and intensity of any pain you experience.

Fatigue

Fatigue is one of the most common side effects of mesothelioma and its treatment. Although nearly everyone feels tired from time to time, fatigue from disease or aggressive treatment like chemotherapy interferes with daily activities and doesn’t go away with rest.

Chemotherapy and radiation in particular can cause fatigue, because both these treatments affect the red blood cells in your body, leading to a condition called anemia.
When you have fewer red blood cells, your body doesn’t get the oxygen it needs to function normally. Symptoms of anemia include feeling tired, weak, or dizzy; being short of breath; and inability to do, or lack of energy for, normal activities or tasks.

Your doctor can test your blood for anemia and may recommend dietary changes or nutritional supplements to combat or reverse its effects. In addition, you can adjust your lifestyle by:

  • Planning several rest or short nap periods throughout your day.
  • Saving your energy for the activities that are most important to you, and asking relatives and friends to take over or help you with routine tasks, such as household chores or errands.
  • Taking part in “quiet” activities, such as reading, listening to music, or needlework.
  • Joining a mesothelioma or cancer support group to share experiences and learn tips from others dealing with similar issues. Check out curemeso.org to find a group near you.

Mesothelioma patients often suffer from insomnia and other sleep disorders, which can be a result of either the disease or your treatment. Talk with your doctor if your sleep cycles or habits change significantly.

You also may want to consider the following measures to promote more restful sleep:

  • Ensure that your sleeping environment is quiet and dark, and that the air temperature is comfortable for you.
  • Sleep in loose, soft clothing.
  • Add or remove pillows to increase your comfort level.
  • Go to the bathroom before you try to sleep.
  • Avoid drinking anything with caffeine for at least two hours before bedtime.
  • Eat a high-protein snack (if recommended or approved by your doctor) two hours before bed.
  • Go to bed and get up at the same time every day.

Dealing with the Emotional Impact

Facing a serious illness can be emotionally devastating, especially when the disease is progressive and incurable. Patients often feel overwhelmed, frightened of what the future holds, and even depressed about their diagnosis. The patient’s family and friends suffer emotionally, too, and may not know how to help the patient cope or how to express or deal with their own feelings.

Negative feelings are normal when you’re diagnosed with mesothelioma or another serious illness, or when you learn that a relative or loved one has the disease. How you deal with your feelings can have a significant impact on your symptoms and your response to treatment, as well as your quality of life.

The following sections discuss some common emotional issues that mesothelioma patients and their loved ones experience, along with some tips for coping with them.

Emotional Toll on the Patient

Anger, anxiety, fear, guilt, embarrassment, and depression all are common emotions after a mesothelioma diagnosis. These feelings can be especially strong if you had no major health issues or definite symptoms (see Chapter 3) before your diagnosis. When that’s the case, learning that you have mesothelioma can feel like a kick in the gut, made even worse because of the shock.

Patients also may feel isolated, particularly because mesothelioma is a relatively rare disease. You may feel as though no one understands either your illness or your emotional pain. If you have to stop working because of the disease, you may feel a loss of identity, purpose, or meaning in your life.

Unfortunately, studies have shown that many oncologists (doctors who specialize in treating cancer patients) have a poor record of recognizing and correctly diagnosing the serious emotional turmoil their patients go through. That means it’s even more critical that you talk with your doctor about any emotional or psychological symptoms you experience, because your mental health is just as important as your physical health in living with and treating your disease.

Signs to watch for include:

  • Depression. Symptoms of depression include persistent sadness (daily or almost daily, and lasting for most of the day); overeating or loss of appetite, or significant weight gain or loss; lack of energy that isn’t related to the effects of your treatment; loss of interest in things or activities you once enjoyed; feelings of guilt, hopelessness, or worthlessness; inability to sleep, or sleeping too much; thoughts of death or suicide.
  • Anxiety. Anxiety can manifest itself in several ways, including difficulty thinking, making decisions, or solving basic problems; headaches, migraines, or other aches such as neck and shoulder pain; trembling, shaking, or restless movements; getting angry easily, especially over minor things.

Some of these symptoms are normal responses to your diagnosis and treatment. However, “normal” responses are generally temporary; you may feel incredibly anxious and depressed for a day or two, then return to your usual emotional state.

If your symptoms of depression or anxiety persist, though, you should discuss options with your doctor or ask for a referral to a mental health specialist. Certain medications may help calm your symptoms, which in turn can make your treatment more effective and your day-to-day experience more enjoyable.

 
But because these medications may interact with others you may be taking, you should always consult your doctor first.

Exercise, proper nutrition, and relaxation techniques like yoga can help manage your emotional symptoms, too. See “Taking Care of Your Physical Health” earlier in this chapter.

Many patients also find that joining a mesothelioma or cancer support group is helpful, particularly in fighting the sense of isolation that often accompanies the diagnosis. Knowing there are others who are facing similar challenges – and having a safe place to discuss your own experiences and feelings – can ease the emotional strain of coping with the realities of your disease and treatment.

Emotional Toll on Family and Friends

Relatives and friends are affected by a mesothelioma diagnosis just as profoundly (though in different ways) as the patient. Shock, grief, anger, and a sense of helplessness are common. Stepping into the role of a caregiver can be stressful, both physically and emotionally. Communication may become more difficult, as the patient may not wish to “burden” loved ones with his or her own feelings, and loved ones in turn may not feel free to share their own feelings or discuss important issues like end-of-life planning
(see Chapter 8).

The following sections offer some insight into how your loved ones may react to your diagnosis and treatment, as well as suggestions for making the transition easier on you and your family and friends.

Your Relationship With Your Spouse

Your spouse is likely to be as frightened of your diagnosis as you are, and this fear may be compounded by anxiety over how to cope with your new needs and what the future holds. Your sex life also will be affected by the disease.
In some instances, the patient, the spouse, or both go into denial and refuse to discuss the illness or its implications. If this is the case, you may want to consider consulting a professional counselor who specializes in dealing with terminally ill patients and their families.

Ideally, your spouse should take part in discussions with your doctor about your treatment and your disease. Knowing the facts and what to expect can ease your spouse’s anxiety and provide a stronger sense of partnership as you both face the challenges involved. In addition, being an active participant in these discussions can give your spouse a better sense of how he or she will be involved your care and what decisions the two of you will need to make (see Chapter 8 for information on end-of-life planning).

For the same reason, your spouse should be involved in discussions with your attorney if you file a legal claim (see chapters 6 and 7) so he or she knows what to expect from the process.

Children

Even adult children can have a hard time coping with a parent’s illness. Losing a parent is never easy, and your children may not feel confident in their ability to “take over” the role of supporter during your illness. They may feel guilty about having limited time or resources to offer, especially if they have families and jobs of their own, and they may find the stress of additional responsibilities overwhelming.

Your children also may not know how to communicate their feelings of anger, fear, or guilt, or how to let you express your own feelings to them. It’s important that both you and your children are able to acknowledge your feelings without either of you feeling guilty for doing so.

Discussing ways in which your children can help you and your spouse – such as performing household chores or running errands, or even planning regular visits – can help ease stress for everyone, because then your children know what you want and need from them, and you and your spouse know what kind of help and support you can expect from your children.

Other Loved Ones

Other people in your family and circle of friends also will be affected by your diagnosis. Parents, siblings, and in-laws may be able to help with emotional support and certain tasks; or, if you’ve been accustomed to helping them, you may have to ask other family members to take on those responsibilities or find other alternatives for their care and support.

Friends may find it difficult to discuss your disease or treatment, and they may not know exactly how to show their support. You can ease the strain by asking for specific assistance when they say, “If there’s anything I can do…” You may ask friends to stay with you while your spouse goes out to run errands or for a social engagement that you don’t feel up to attending, for example. Or you may ask friends to provide a social outing for your spouse as a break from his or her new responsibilities.

If you’re honest about what you want and need from your family and friends, your relationships will be stronger and your quality of life will be better. Let people know when you need company, and be honest when you just don’t feel up to it. Offers of help are positive measures of your loved ones’ feelings for you, so give yourself permission to accept these offers in the spirit in which they’re given.

Considering Hospice Care

Hospice programs provide so-called “comfort care” to patients whose illnesses have stopped responding to treatment, or to patients who choose not to pursue aggressive treatment. Nearly every community in the country has a hospice program; your doctor or local hospital can refer you to your local hospice group. You can receive hospice care in your home or at a residential facility or nursing home. Medicare and other insurance plans often cover most hospice costs.

The goal of hospice care is to make the patient as comfortable as possible during the final months of life. In addition to pain management and other medical treatments, hospice programs typically offer spiritual support to the patient and loved ones.

Hospice workers also can discuss end-of-life considerations with you and your family, such as advance directives, do not resuscitate orders, and funeral planning (see Chapter 8). Family members also have access to counseling and bereavement services when a patient dies while in hospice care.

Choosing hospice care is a valid option and often relieves both physical and emotional stress for patients and their families. Because mesothelioma is resistant to treatment and because the treatment options for this disease have serious side effects, some patients elect to focus on the quality of their lives rather than on attempting to extend their lives.

Your doctor can refer you to hospice programs near you. Just as you should feel comfortable with your doctor and attorney, you should choose hospice services you feel comfortable with and that are experienced in helping patients with your disease. Most hospice programs are open to patients who are expected to live six months or less.

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