Support Mesothelioma Caregivers During National Family Caregivers Month

It is hard to understand the challenges caregivers face every day, unless you have been a caregiver yourself. While pleural mesothelioma patients may have the spotlight turned on them this month during National Lung Cancer Awareness Month, now is also a time to shine a light on caregivers during National Family Caregivers Month.

Patients diagnosed with mesothelioma face a long, demanding battle involving countless doctors’ appointments, extensive tests, chemotherapy treatments and radiation therapy. Managing the illness and all the appointments, on top of taking care of day-to-day living needs, takes the help of a dedicated caregiver. Caregivers, typically spouses or other family members, provide nearly constant care for mesothelioma patients, often while trying to care for other family members.

This year, the Caregiver Action Network (CAN) recognizes that caregiving can be a 24-hours a day/7-days a week job and has designated the theme for National Family Caregivers Month as “Caregiving Around the Clock.”

According to CAN, more than 65 million family caregivers, or 29% of the U.S. population, “provide care for a chronically ill, disabled, or aged family member or friend during any given year.” Although CAN notes that the average amount of care time is 20 hours per week, those hours are all day long: morning, during the workday, evening, late at night and in the middle of the night – every day.

For mesothelioma patients, the caregivers are vital for helping them follow their medical, dietary and exercise regimens. Caregivers are called upon to deal with the myriad medical appointments, medical bills, updates to other family members and friends as well as ensuring that the household runs efficiently.

President Trump declared in this year’s presidential proclamation: “Caregivers must often be available around the clock, which can require them to forgo or postpone priorities for their own lives. Through sacrificial love, caregivers endure emotional, physical, and financial strain for the sake of another.”

We here at MesotheliomaHelp join President Trump and all Americans in honoring “those whose extraordinary selflessness provides others with independence and comfort.” We offer our appreciation to all the caregivers supporting a loved one as they fight mesothelioma.

Visit the Caregiver Action Network website for caregiving support resources and more information.

Mesothelioma Survivor Help Guide Research Care

Long-Term Mesothelioma Survivors Help Guide Research, Care

Over 25 years ago, as a young RN working nights, one of my male co-workers was diagnosed with non-Hodgkin lymphoma in his mid 20’s. He was married and wanted to start a family. Dealing with the diagnosis, and the changes it was making in his life were difficult. He sought counseling, followed his doctor’s recommendations, underwent treatments and went into remission. He and his wife had a family and he continued to work.

All of this was challenging, but he always wore a smile. He has had health challenges over the years and has undergone procedures, been treated for complications of the therapy, and tried new therapies. He has continuously given back to others who have been diagnosed with cancer. Recently, I ran into him. He said his original doctors have retired, and that his “doctors do not know what to do with me.”

He is a long term survivor, a pioneer, happy to be in the position he is in. His children are young adults, he has seen them grow, been part of their lives. He has been able to experience the important things that matter the most in life. At this point he is a survivor, and he and his doctors are learning together how to manage anything that comes up for him medically.

His story is starting to become more common. A long term survivor of malignant pleural mesothelioma recently related the same issue to me. He is glad to be in the category of survivor, but there are issues that do not seem to have guidelines. Questions get answers that are often vague.

This issue is an important one: care of long term survivors of mesothelioma cancer and their quality of life. It is a part of ongoing research. As we know, it takes time for the research to be developed and the results analyzed.

Once again, it is the brave people who have been diagnosed, treated, and survived that are leading these pioneering efforts to help others. By bringing attention to this issue, the mesothelioma community can come together and support and learn from the survivors. Not only has the community benefitted from their courage in trying new treatments over the years, it has led to a point where a small number of survivors are now living longer. As the community continues to support patients at the beginning of their journey, long term survivors also need our ongoing support.

Thank a Mesothelioma Caregiver During National Family Caregivers Month

November is National Family Caregivers Month. This is a great time to recognize and thank those countless faces who sacrifice so much to take care of their loved one. As a former part-time caregiver myself, I have both experienced, seen, and felt the beauty and the pain of taking on this role.

During my time caring for my father as he fought mesothelioma, I gained a new appreciation for caregivers. They are there 24 hours a day, doing whatever needs done without batting an eye. You’re hungry… no problem. Need a blanket? Here’s two. Not feeling well… already on the phone with the doctor. It is an intense undertaking.

On the other side of the aisle, so to speak, the love that you get to share with the person you’re caring for is indescribable. When you help someone with no expectation of getting anything in return, that’s when you really feel like you’re making a difference. I remember the quiet, “Thanks, Kiddo” that Dad always said when I helped him. The way you could just tell that you made him feel special, loved, and cared for; it was something I will always remember.

So, to everyone out there caring for someone, I say thank you. You play a pivotal role in the life of your loved one. Don’t think for one second that it’s not noticed or appreciated, because deep down, that person knows they need you. They may be too proud to say it, but the feelings are there in their heart. You are important! After all… there’s a whole month celebrating you!

Lung Cancer Awareness Month - Mesothelioma

Turning a Spotlight on Mesothelioma During Lung Cancer Awareness Month

For many people, November means apple cider, pumpkin pie, and Thanksgiving. In the health and medical fields, November is Lung Cancer Awareness Month, which emphasizes education and awareness of all things about lung cancer and other cancers affecting the respiratory system – such as mesothelioma.

This year, help out by making November a month to educate others about mesothelioma and lung cancer by taking part in Lung Cancer Awareness Month. Teaching the facts about mesothelioma, its symptoms, and its causes can help patients, family members, and friends better understand the disease and help advocate for the community.

Pleural mesothelioma is caused by inhalation or ingestion of airborne asbestos fibers. The fibers then become lodged in the lining of the chest, where, over the years, they begin to irritate the tissue leading to cancer. Not everyone exposed to asbestos will develop mesothelioma, but those who do often are not diagnosed until decades after exposure. The treatment protocol for pleural mesothelioma is similar to that of lung cancer.

People who live with pleural mesothelioma, or who care for someone with the cancer, know that educating the public about the struggles facing rare disease sufferers often takes a focused effort from organizations, the government, the medical community and many volunteers.

Early Detection of Mesothelioma is Important

With a vision of “a world where no one dies of lung cancer,” LUNGevity is 100% focused on increasing and improving lung cancer survivorship. In addition, the 501(c)(3) charity focuses on building and sustaining a community for all those affected by lung cancer and through “accelerating research into early detection and more effective treatments” the organization aims to make an immediate impact on quality of life and survivorship in lung cancer patients.

The key to increased life expectancy when battling mesothelioma is early detection. When treating mesothelioma patients, the best outcome is achieved with early detection of the disease by increasing treatment options and improving the patients’ quality of life while battling the cancer.

“LUNGevity believes strongly that everyone can drive progress and change for people affected by the disease, whether through research funding, mentoring a fellow lung cancer patient, or organizing and participating in events and activities to raise funds and awareness,” as stated in the 2016 press release kicking off the awareness month.

Know What Questions to Ask Your Mesothelioma Doctor

According to the American Lung Association, “The diagnosis of mesothelioma is very serious and may be overwhelming and affects all aspects of life in a profound way.” The ALA recommends being actively prepared for each healthcare visit by writing down questions to ensure you get everything you need in the short visit, and that your family and caregivers are thoroughly informed about your wants and needs.

What is the goal of the treatment you are proposing? Is the intent to cure me from the disease or manage its symptoms?
What are the side effects of the proposed treatment and how will they affect my quality of life?
Am I a candidate for any clinical trial?
What are my options for palliative care to address management of my shortness of breath and pain?
Can you help me and my family make decisions about how I will be treated at the end of my life?

Lung cancer is the leading cause of cancer death in men and women with an estimated 222,500 new diagnoses and 155,870 deaths in 2017, according to the National Cancer Institute. Nearly 3,000 Americans are diagnosed with mesothelioma each year.

Visit ‘Faces of Mesothelioma’ to read stories from mesothelioma survivors and their family members about how mesothelioma has impacted their lives.

Use Your Learning Style to Better Understand Mesothelioma

When diagnosed with malignant mesothelioma, patients and families are often entering into a new area of information. This area is complete with its own medical language, long words, and answers that are individualized and can be confusing. When gathering the information to make those important decisions regarding your health, and the course you want to choose for treatment, it is important to understand the information you are hearing and reading about.

Over the years, the approach of the medical team towards patients has changed. It used to be one of “these are your instructions, this is what the doctor ordered.” Meaning it was more do what you are told to do, and do not question your medical team. The doctor was in charge and patients and the medical staff followed orders. This approach no longer works – if it ever did.

What works is the team working with the patient, and the patient’s family, to support whatever decisions he/she makes. The patient is the manager of his or her own life – in charge of the medical decisions, based on the understanding of the medical condition. How do you make these life-altering decisions? These days most people will turn to Google. Is this the best way for you to learn new information? Is reading the information enough for you?

Do you know how you best learn new information? Here are a few different learning styles:

Visual: You learn by sight with images, pictures, colors, or spatial organization of elements.
Auditory: You learn by listening, speaking, sound, or rhythm.
Reading / Writing: You learn best by reading the material, or writing the material down.
Kinesthetic: You move your body to help you learn like tapping your toes or using your hands, including writing or drawing. You basically use your sense of touch.

We all learn in our own unique way, and when it comes to dealing with your malignant mesothelioma treatment, it is vital that you understand and comprehend your options.

You might think that your learning style has nothing to do with the diagnosis and treatment of a rare cancer such as mesothelioma. It does. Over the years many patients have not “heard” or understood what the doctor said. It is difficult to keep all the terms, and options straight. By knowing how you learn, you can then question the doctor and have a better chance of understanding.

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