Author: Lisa Hyde-Barrett
Nurse Learns From Mesothelioma Survivors
As a nurse, I ask my mesothelioma patients many questions. The ones that pop into my mind are what was their asbestos exposure, and are they starting treatment or are they back for more treatments. If they have previously been treated and are back for a follow- up appointment, I try to find out to what they attribute their survival.
The definition of a survivor is the state or fact of continuing to exist, typically in spite of an accident, ordeal or difficult circumstances. Mesothelioma is right up there with the most difficult of circumstances. I am always fascinated by what helps keep mesothelioma patients alive and getting out of bed every day.
One woman said she simply follows the instructions of her physicians. Sometimes these are the most basic like walking, taking multivitamins, and eating a healthy diet. I sat with a patient who had mesothelioma seven years ago and she told me that she just tries to focus on the positive. She focuses on her breathing and her last scan that was negative for any recurrence. She stays in the moment and tries to improve on areas that are not as strong. She told me she goes to therapy. This women does not want to be defined by her mesothelioma, but by her actions. She is out and about on social media helping people out with their own personal journeys.
I met another patient yesterday who had an attitude of gratitude. It was really surprising, and he was so happy just to be alive. He could only say nice things about his medical team. And most of all he had plans for the future. He has a birthday coming soon and he plans to be home for that. This particular patient had many, many setbacks and has experienced all the emotions that one can endure. At one point during his hospitalization he refused to get out of bed and walk. This guy was negative early on, but today, he too is a survivor.
I am fascinated to find out what makes people survivors. There are many answers and there no wrong ones. If you have been diagnosed with mesothelioma, and you are living with this disease, guess what? -you are a survivor.
We are very interested to know what makes you a survivor. Please share with us and let us know your success story.
Feel free to contact us with your story or with any questions you may have about your mesothelioma treatment.
Mesothelioma Specialists Focus on the Patient
Everyone who faces mesothelioma also faces a myriad of choices for treatment. There are many scientists and doctors who have dedicated their careers to help curing this devastating disease. There are different thoughts on how to treat the disease and the patient, and new ideas and approaches are constantly being tested and investigated. Rather than one treatment being the “silver bullet” for mesothelioma, it is thought that depending on stage, cell type of the disease, and performance status of the patient, the treatment be tailored to the patient. The treatment options include chemotherapy, surgery, radiation, as well as less aggressive options to just treat the symptoms.
The scientific process is a rigorous one that involves checks and balances. When searching for a treatment center for an opinion on mesothelioma, remember each center has an expert who has researched extensively, studied many patients and results, written scientific papers, and is an expert in the field.
Recently there has been controversy over whether extrapleural pneumonectomy, an operation to remove the entire lung, as opposed to a pleurectomy, an operation to remove the lining of the lung but spare the lung, is the best treatment option for the mesothelioma patients. There has been much discussion and as the discussion continues in the scientific community patients can wonder if they have chosen the right path. The mesothelioma patient and family can become confused as to what the best option is, and if their choices are the right ones for them.
Confusing claims and technical discussions can lead to questioning the treatment plan. Although progress is slow and research is ongoing it is vital for the relationship between the patient, family and their team of doctors to all know they are working for the best interest and best treatment options for the patient.
The discussions regarding all the treatment options for mesothelioma being presented by your medical team are all meant to offer the best approaches with the best interest of the mesothelioma patient at the center of the discussion.
Know more about Mesothelioma and how you can deal with it.
Mesothelioma Caregivers Can Reach Out for Help
Being a caregiver can be very rewarding, but there is also no doubt that it can also be life-altering and stressful. Most people never envisioned that they would become caregivers. Life took them on a path that they neither predicted nor planned for. Mesothelioma can have an incubation period of up to fifty years after exposure to asbestos to the first symptoms. During this time many roles have been established in your relationship with your family members, maybe caregiving was a part of it, maybe not.
Over the years of talking to mesothelioma patients and their families regarding the role of the caregiver, it is clear that due to the nature of the disease of mesothelioma the emotional impact of being a caregiver is lasting and can be very isolating. The stress involved can impact the caregiver’s health as well.
A recent study showed that caregivers can shorten their own lives by not taking care of themselves. The long-term stress has a cumulative effect on their health. Of the tips most often listed for caregivers, making sure they take care of themselves is the most important. If the caregiver is not healthy, caring for their loved one will not be easy and can suffer. Caregivers need to keep their own medical appointments, get plenty of sleep and eat well. Also, being informed about mesothelioma and what to expect next can help ease some of the stress of the unknown.
All this sounds good, but how do you possibly do it if you are caring for someone sick with mesothelioma? Accept help, organize the help, and allow people and friends to do specific tasks. Let yourself go out for the afternoon, and get a little distance between yourself and the one you are caring for for a few hours. Appreciate the help you get – you can’t be expected to be by your loved one’s side at all times.
Seeking help can take different forms for different personalities. Some people seek individual counseling, whereas others prefer support groups. Social media is a good place to start to find information about mesothelioma and to hear from others with the disease. Also, talk with your medical team for suggestions of an appropriate support group. Whatever the choice, please reach out to someone or some group to make your journey a little less lonely.
Mesothelioma has already made a huge impact on your life, don’t let it steal your health also.
If you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, please contact us.
Know more about Mesothelioma and how you can deal with it.
Mesothelioma Nurse to Another: “Thanks for All Your Hard Work”
Mary Hesdorffer is the Executive Director of the Mesothelioma Applied Research Foundation, and is a tireless advocate for mesothelioma patients and their families. The mission of the Meso Foundation is to support patients and to fund research leading to a cure for mesothelioma.
Mary has been an advocate for the mesothelioma community for many years. She is passionate about her patients, and thousands have benefitted from her support and knowledge. Mary is a leader and a personal inspiration to patients, caregivers and fellow nurses. She is always available and approachable – and most importantly, she knows the answers to your mesothelioma questions (or will get it for you).
Today, while looking for the right way to spell her name, I came across an exciting new project that Mary has completed. She has written the first-ever booklet on clinical trials for mesothelioma. Clinical trials are the way that mesothelioma researchers are going to eventually be able to cure mesothelioma. In the United States, less than five percent of cancer patients participate in clinical trials.
Educating patients and their families about clinical trials is imperative to future treatment modalities, and for refining the ones that we currently have. One of the barriers to mesothelioma research has been patients and treatment centers not knowing what is available. Which studies are enrolling patients, what the criteria for the studies might be and the clinical trial phases are all key pieces of information patients and doctors need to know to find an appropriate trial. All of this information is available on www.clinicaltrials.gov, but many people are intimidated by the site or just aren’t sure what to look for.
Mary has simplified the search process and made the booklet easy to understand. Hopefully, her efforts will lead to increased knowledge and participation.
Navigating the medical system when dealing with any condition can be challenging, but when you or someone you love is diagnosed with mesothelioma it can be totally overwhelming. The information that you find might not be up to date. It is important to go to a mesothelioma center and be seen by a team that specializes in mesothelioma. While doing your research look at the Mesothelioma Applied Research Foundation’s website, www.curemeso.org, download the booklet, view the past conferences, and know that the organization is dedicated to support and research for a cure.
Mary Hesdorffer is a true mesothelioma hero. Thank you, Mary, for all your hard work and tireless dedication to the mesothelioma community.
Nurse is Continually Inspired by Mesothelioma Patients
As a nurse, I learn a lot about resilience from my patients. After some of the most challenging surgeries, I watch as patients and their families deal with pain, living restrictions and trying to get back into a normal life. But those who live day-to-day with mesothelioma never cease to inspire me. I am continually amazed at how people not only live with the effects of mesothelioma, but return to a daily routine.
In some situations, patients have to fight hard to not only beat the side effects of chemotherapy and radiation, but also the effects of this dreaded disease. These patients often have weekly, if not daily, medical appointments on top of battling this relentless cancer. It can all be daunting, but so many mesothelioma patients fight their symptoms and aggressively attack the disease so they can be there for their families.
It seems every day I get a wakeup call as to just how challenging life can be for chronically ill mesothelioma patients. Sometimes I am stopped dead in my tracks watching patients and their families grapple with the enormity of the disease – but they do and they keep moving forward.
Everyday can be a battle for mesothelioma patients, and I think we often forget about them. So if there is anything you can do to make just one day a little easier for a friend or loved one please do it. It will make a difference for you and the patient!
If you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, please contact us.
Free Mesothelioma Patient & Treatment Guide
We’d like to offer you our in-depth guide, “A Patient’s Guide to Mesothelioma,” absolutely free of charge.
It contains a wealth of information and resources to help you better understand the condition, choose (and afford) appropriate treatment, and exercise your legal right to compensation.
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