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Living With Mesothelioma

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A mesothelioma diagnosis can affect the mental, physical and emotional aspects of your life, but with the right attitude and proper information, it is possible to overcome these challenges. Survivors and caregivers share how they manage this rare type of cancer.

Dealing with a cancer diagnosis, especially one as rare and aggressive as mesothelioma, can affect your life in many ways. Patients, caregivers and family members may feel overwhelmed, anxious, confused or angry about the many challenges ahead.

If you’re the one diagnosed with the deadly disease, people you love may start treating you differently. These feelings and changes are normal responses to this life-changing experience.

Some take this time to reflect on their lives and make positive changes to their mental, physical and emotional health. It’s not always easy, but over time, you may find that living with mesothelioma is possible. Many survivors have found ways to cope with their diagnosis and not let it define them. We believe you can, too.

Caregivers and family members also have learned to survive these challenges.

Survivors Who Have Overcome These Challenges

Each person’s path to beating this cancer is unique. Some choose aggressive treatment, while others choose alternative medicine or a healthy lifestyle. These survivors beat the odds and overcame many challenges associated with their diagnosis.

  • Mike T., Mesothelioma Survivor Mike T.

    2011 – Present

  • Wayne N., Mesothelioma Survivor Wayne N.

    1991 – Present

  • Jacob H., Mesothelioma Survivor Jacob H.

    2012 – Present

  • Andy A., Mesothelioma Survivor Andy A.

    2010 – Present

  • Tim C., Mesothelioma Survivor Tim C.

    2002 – Present

  • Trina C., Mesothelioma Survivor Trina C.

    2001 – Present

  • Ruth P., Mesothelioma Survivor Ruth P.

    1999 – Present

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How Mesothelioma Can Affect Your Daily Life

Just as the disease affects your body, it also can affect the way you feel, think and act. These common symptoms sometimes can complicate your daily life.

Anxiety

The illness and its treatment can alter your physical appearance. This makes some people feel uncomfortable and self-conscious. Hair loss after chemotherapy can be an emotional experience that affects a person’s confidence and possibly interferes with daily interactions with family or friends. Some find that wearing a scarf, wig or hat helps alleviate some of these worries.

Routine activities such as running errands, playing cards at the club or taking a walk down the street can become moments of anxiety and self-doubt based on appearance. Don’t feel obligated to put yourself in a situation where you don’t feel comfortable, but know that your family and friends are here to support you.

Coping with hair loss from chemotherapy

Other Side Effects of Treatment

Chemotherapy is often hard on the body. It can result in a loss of appetite, fatigue, stomach pain, shaking, trembling and a loss of balance. These symptoms may make daily routines such as cooking or climbing stairs more difficult.

The aggressive therapy can also cause you to feel tired, weak, achy or sore, which may affect your ability to stay active. Extreme fatigue may cause a decrease in your ability to maintain household chores. Although recovery from surgery may slow you down initially, a 2009 study found that surgery can improve physical symptoms rapidly, as well as quality of life.

Each person’s diagnosis is unique, as is their response to treatment. Some may be affected more than others. Make sure you talk with your doctor if you experience any side effects.

Side Effects of Chemotherapy

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Toll on Emotional and Mental Health

While it’s important to take care of the cancer before it harms your body further, it is also imperative you take care of your mental and emotional health. Most patients, caregivers and family members experience some level of depression, anxiety, hopelessness and fear once this cancer becomes a part of their lives. This can affect relationships.

Anyone going through these emotional side effects can benefit from a support system. People who care about you and understand what you experience on a daily basis can help you cope with your diagnosis and become more aware of your emotions.

support of a loved one

Dealing With Unexpected Changes

There are many challenges that arise after receiving a mesothelioma diagnosis. These physical and mental changes can greatly impact your daily life. Sometimes you may find that you are directing your anger or confusion at the wrong person. You may blame the doctor for not finding the cancer sooner or you may take out your frustrations on your family or friends, because you don’t think they understand what you’re going through. Sometimes you may feel pain and cancel plans with your loved ones.

These are all common responses to a major life change, but there are ways to combat the challenges of your diagnosis.

  • Emotional support

    Emotional Support

    Share your feelings

    Sometimes you may feel that you’re out of sync with your loved ones. For instance, your loved one may feel hopeful and optimistic while you feel scared, but people react to difficult situations differently. Whether or not your feelings coincide, emotional support is important. Talking about your differences may help both of you better understand one another and allow you to better cope with this disease.

    Support groups are also a great way to receive emotional support, talk about your experiences and hear advice from others going through similar situations.

  • Pain management

    Pain Management

    Ways to reduce discomfort

    Two surgical procedures can treat pleural effusions: Pleurodesis and thoracentesis. Both extract the excessive fluid buildup, but a pleurodesis also involves the sealing of the space where fluid collects for a more permanent solution.

    A paracentesis is best for pain from peritoneal mesothelioma. It also drains removes fluid from the abdominal cavity. Pain medication, massage and deep breathing exercises also help reduce pain.

Speak with a Patient Advocate

One of our Patient Advocates can suggest ways you can change your diet, try out a new exercise and other ways to reduce stress.

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  • Healthy diet

    A Healthy Diet

    Recover better after treatment

    A nutritious diet can help you regain your energy and it can help you feel better and more in control of your life. The effects of chemotherapy can make it more difficult to eat. You may not feel as hungry or you may completely lose your appetite. Radiation can cause nausea and vomiting. Altering your diet can help combat these side effects and ensure your body is getting the right amount of vitamins, calories, proteins and carbohydrates necessary to fight back.

  • Exercise

    Exercise

    Helps reduce symptoms of diagnosis

    Maintaining a regular exercise schedule can promote healing. Light exercise such as walking or water aerobics can reduce some of the symptoms associated with your diagnosis, including fatigue, depression, nausea, weight loss and weakness, which may impact your daily life. Physical activity can also help you maintain healthy bones, muscles and joints, as well as promote psychological well-being.

  • Yoga

    Mind-body Treatments

    Can help release stress

    Fears and uncertainties about the future can cause a lot of unexpected stress in your life. Mind-body therapies such as yoga, tai chi, qigong, prayer, mediation, art and music focus on using the body to affect the mind, which can help relieve some of this stress, as well as improve sleep, ease difficulty of breathing and increase your overall quality of life.

  • Keep your options open

    Keep Your Options Open

    Try alternative therapies

    If one method of overcoming your own challenges isn’t working for you, don’t be afraid to try something different. If standard treatment isn’t enough, talk with your doctor about complementary and alternative treatment options to add to your treatment plan. If calming yoga isn’t working, try a more strenuous workout routine.

How We Can Help

We know adjusting to life after diagnosis may seem overwhelming, but we are here to help guide you along this journey and show you that you can live with mesothelioma. It is possible.

Our Patient Advocates are here to listen to your concerns and suggest ways for you to overcome any challenges you are facing.

We host an online support group every month for people with mesothelioma, as well as caregivers, to allow people to share stories and advice, and to get the emotional support they need. Support groups can offer relief in knowing that someone else is going through a similar challenge, which can eliminate some feelings of isolation.

We also offer a complementary packet of information tailored to your specific needs. This packet includes doctor-reviewed information about your diagnosis, as well as inspirational books from survivors and caregivers on their battle against mesothelioma.

If you’re worried about how you’re going to pay for medical treatments, let us help. Our financial assistance program can offer many ways for you to afford treatment, travel and other medical costs.

Additional Resources

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