Living with Mesothelioma
Living with mesothelioma is becoming more common as advances in treatments have improved patients’ life expectancies. Learn about the emotional and physical challenges you might face and how to overcome them.
How Do You Cope With a Mesothelioma Diagnosis?
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 mesothelioma 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.
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
Mesothelioma 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.
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 mesothelioma treatment. Some may be affected more than others. Make sure you talk with your doctor if you experience any side effects.
Toll on Emotional and Mental Health
While it’s important to take care of mesothelioma 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.
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 mesothelioma 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
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 mesothelioma. Support groups are also a great way to receive emotional support, talk about your experiences and hear advice from others going through similar situations.
- Talk about your feelings.
- Maintain ties with family and friends by keeping in touch on a regular basis.
- Practice mindfulness.
- Take little breaks from your responsibilities. Even a five-minute break can help reduce stress.
- Stay active to release brain-balancing chemicals.
- Do things you excel at and enjoy.
- Reach out for help when you need it.
- Care about someone else to remember how good it can feel to give care to others.
- Consciously find ways to reduce stress and responsibilities.
Pain Management
Pleurodesis and thoracentesis are two common surgical procedures used to treat pleural effusions, a condition common among pleural mesothelioma patients. Both extract the excessive fluid buildup, but a pleurodesis also involves the sealing of the space where fluid collects for a more permanent solution. For those with peritoneal mesothelioma, a paracentesis drains the abdominal cavity of fluid buildup. Pain medication, massage and deep breathing exercises also help reduce pain.
A Healthy Diet
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.
Unless you rely on fast food or processed foods for most of your meals, do not worry about drastically overhauling your diet. Focus on eating a healthy diet that is rich in protein.
- Eat more protein during cancer treatment and recovery.
- Get enough calories during treatment.
- Consume more vegetables and fruits for added nutrition.
- Eat freshly prepared whole grains such as brown rice and quinoa.
- Try bland foods when nausea occurs.
- Consider liquid and mashed foods when mouth sores are painful.
- Limit sugar consumption. Opt for desserts made with protein-rich eggs.
Exercise
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.
- Aim for two and a half hours of gentle to moderate aerobic activity each week.
- If moderate activity is too strenuous, only do gentle activities.
- Do strength training at least two days a week using light weight or body weight.
- Practice flexibility training two to three days a week, in sessions at least 10 minutes long.
- Ask your oncologist if physical therapy could help you recover from treatment.
Mind-body Treatments
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.
Social Health
Socializing and maintaining healthy relationships is important to your overall physical and mental health. Poor social health can be bad for your health just like a poor diet or failing to exercise regularly. Feeling alone or isolated may lead to feelings of anxiety or depression, so it is important to consider your social health when facing cancer. When you have a network of friends and family to rely on for support, you feel more empowered to cope with the cancer experience.
- Be active in your community.
- Maintain healthy relationships with other people and yourself.
- Limit or let go of unhealthy relationships.
- If you feel guilty asking for help, try to understand why.
- Schedule time with family and friends to ensure you maintain an active social life.
Survivors Who Changed Their Lifestyles
Medical breakthroughs and refinement of the best methods to treat mesothelioma have helped more people to live longer with the cancer. Though it rarely goes into remission and usually returns following treatment, doctors are better able to manage mesothelioma than ever before. And patients are taking an active role in their health, opting to seek out a more holistic approach to healing that addresses more aspects of their overall health. Rather than let the doctors be 100 percent responsible for the outcome, these patients did what they could outside the hospital to improve their chances of long-term survival.
As a biomedical imaging engineer, Jacob H. was already immersed in the health-care industry when he was diagnosed with peritoneal mesothelioma in 2010. And he was already an active man playing intense sports like rugby. Prior to his surgery, he exercised more and ate healthier because he knew these efforts would improve his chance of survival. Following treatment, he continued with the healthy eating and returned to exercising once he recovered. Within three months of his operation, Jacob was back at work. “People have to understand progress is being made in this field. And every day, there is a miracle waiting to happen,” says Jacob.
Wayne N. was diagnosed with pleural mesothelioma more than 20 years ago while in his 60s. Because he watched his wife suffer through chemotherapy and radiation therapy for her lung cancer without benefit, Wayne decided to pass on traditional cancer treatment. Instead, Wayne opted to improve his health through diet and exercise and continued with his daily red tart cherry regimen. Every night, Wayne eats nine red tart cherries, which he keeps stored in his freezer. He believes the cherries and his natural approach to boosting his immune system through diet, vitamins and fitness are what keep his mesothelioma in control.
Thoracic surgeon Dr. David Sugarbaker, of the Lung Institute at Baylor College of Medicine, diagnosed Rich D. with pleural mesothelioma in 2012. Although the diagnosis was a devastating blow to the Central Florida resident, he kept his hopes high by traveling around the country with his son — reinforcing their bond. However, after several treatments at the Moffitt Cancer Center in Tampa, including a lung-sparing pleurectomy/decortication, Rich has shown remarkable recovery. He now credits his good health to his faith in God, as well as tea made from Graviola leaves, a natural cancer-fighting product. Rich maintains an active lifestyle with his wife Aline.
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.
Do You or a Loved One Have Mesothelioma?