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Monthly Archives: October 2018

Loneliness

Eleanor Ericson Mesothelioma NurseRecently, on a home visit to a patient I asked, “How have you been since the last time I was here?” He said he was fine, but I thought he looked sadder than when I saw him last. After a brief cry, we started talking about how he really felt.

My patient had been affected by a public health issue: exposure to asbestos leading to a diagnosis of malignant mesothelioma. He also was affected by another public health issue becoming an epidemic – loneliness and social isolation. Because loneliness is such a problem for mesothelioma patients, I encourage caregivers and medical providers to take time to listen to the patient, really listen to what they are saying and what they are not saying. This can have a profound effect on their physical and mental health. To be our healthiest, physically and mentally, we need to relate to each other. The strength of the bonds that we have with other people can help us feel connected, and part of something.

Loneliness is an epidemic that affects people throughout the world. Not only does it affect your mental health, it has a direct effect on physical health. The physiological way that loneliness affects health is that it can trigger some of the same hormones that your body makes when it is under stress. Long term stress is detrimental to health.

Doctors in England have recently recognized loneliness as a public health epidemic. This past summer, Prime Minister Theresa May appointed a national Minister of Loneliness. Indeed, by 2023, doctors in England will write prescriptions for cooking classes and walking groups as part of a government initiative to combat loneliness. This is a new program called “Social Prescribing.” The plan is for doctors to recommend group activities, such as cooking classes, walking groups and art clubs, instead of medication. In fact, the British government reports that about 200,000 older people across the country haven’t had a conversation with a friend or relative in more than a month.

It is not just the elderly who are suffering from loneliness. In 2018, Cigna, a health care insurer, conducted a study indicating half of all Americans reported they feel alone, isolated, or left out at least some of the time. In fact, American Millennial and Generation Z adults – about 75 million people total – are lonelier than any other U.S. demographic and report being in worse health than older generations. Being connected on the internet is not the same as human interactions and relationships.

The physical toll that loneliness takes on mortality is suggested to be the same as smoking 15 cigarettes a day, making it more dangerous than obesity. People who are lonely and isolated are more at risk for heart disease, stroke, immune system illnesses, and often have a harder time recovering from cancer. Loneliness has also been found to contribute to premature death for people of all ages.

In the age of social media, how can we combat this potential epidemic? We can all make a conscious effort to connect with people. Try to connect with people in your community, church, and neighborhood. Do not assume that everything is okay, or that you would be intruding on someone’s privacy. People who find themselves feeling isolated and alone can benefit from support groups, adult classes, volunteering – any activity fostering connections with people will help.

Listen to your neighbors, family, and friends. Reach out and connect.

Sacrifice

Lisa Hyde-Barrett, RN Mesothelioma NurseIt always amazes me how much people will sacrifice to treat their mesothelioma at a major treatment center. Recently, I met someone who came to us from South America, and another family from the Middle East. Not only is the geographic distance an issue, a significant language barrier exists as well. Another example is a young woman who moved to a neighboring state to be closer to radiation therapy at a specialized center. Just last week, we met an elderly couple taking an Uber to treatment at a mesothelioma center because driving was too overwhelming. What patients will do for specialized care is endless.

Most people think they would do anything when faced with a rare cancer diagnosis, but often, obstacles get in the way. Let’s face it, it is easier to remain in the comforts of our own home, with the things we know and the people we love. Yet, patients determined to treat their disease will sacrifice the comforts of home to access cutting-edge care. Further, they will sacrifice days of their lives to get a second opinion and explore other options.

Living in hospitality homes or local hotels is not easy, but that may be the cost of going to a mesothelioma center. We hope patients understand that health care professionals know the sacrifices made when traveling distances to be treated at a center. There are resources available and, although it helps, sometimes it may feel like it is not enough. Mentally and physically these are challenging times for patients and caregivers who choose to make sacrifices during their journey.

The flip side to all this is there may be treatment for your mesothelioma, whether it is surgical, chemotherapy, radiation, palliative care or alternative care. I am one hundred percent sure that there are more options at a mesothelioma center than at a local community hospital. Your local medical center is probably a great institution, but simply does not have the experience that a specialized mesothelioma center offers. Having access to top medical treatment is so important. When days and nights seem daunting and you feel like your hotel walls are closing in on you, stop and pat yourself on the back. Remember, you are in pursuit of excellent treatment and a chance to beat this disease. Success comes hard and often must be fought for, but everyone’s life is worth it. Being fortunate enough to know about a place that can offer expert care is a gift. Not everyone knows that these centers exist and that there are treatment options. Mesothelioma is a rare disease and although you feel confident in your local practitioner, we encourage you to make the sacrifice and go to a mesothelioma center.

Individuality

Eleanor Ericson Mesothelioma NurseWe have learned something from every patient or family member that we have met over the years. The lessons have been as diverse as the patients and family members themselves. Some have been cultural lessons; a great deal has been about human nature. how relationships are affected by being diagnosed, and how we can help and support them has been an ongoing focus of ours. Relationships and how a cancer diagnosis affect the reactions of family members, can be a source of both comfort and stress during their journey with mesothelioma.

Sometimes when faced with big, uncomfortable, situations we become overwhelmed. These feelings can lead to inaction, denial, or thoughts of overwhelming despair. The Cambridge English Dictionary has a definition of overwhelming that fits for patients diagnosed with malignant mesothelioma. It is, ”1. difficult to fight against 2. very large or very great 3. very great or very strong.”

Being diagnosed with a rare cancer can be overwhelming. The person who is diagnosed is dealing with his or her own emotions. Often, as we have witnessed they are the one in a relationship that usually leads the couple or family. The family, or the other person in the relationship looks to them for direction. As every relationship is unique what we observe to be a couple supporting each other or not supporting each other can be the way the relationship works. Not all relationships are “healthy” or supportive. A diagnosis of cancer can be a stress that is added to an already stressful situation.

At a recent meeting with newly diagnosed mesothelioma patients, one of the patients and his wife were in attendance. As the meeting progressed the wife had to leave the room. The information, what they had already been through to come to a mesothelioma center was too much for her. The patient explained that they lead a simple life and coming to the city had been something that had been difficult for her. Faced with the loss of her life partner she wanted to go home to their life.

When faced with big challenges in life, we all have our own ways of coping. We lean on those around us for affirmation that we are choosing the right path, that what we have decided is what is best for us. Malignant mesothelioma can seem like a mountain to climb, with no guarantee that you will make it to the beginning hill. This journey starts with small steps.

While talking after the meeting with the wife who was overwhelmed at the meeting, once again we realized that the journey with mesothelioma is different for everyone and making the first steps are often the hardest. The difficulty that they had experienced getting to the center, hearing the information, realizing what they were faced with had overwhelmed her. The logistics of treatment, how to return to the center, where to stay, the financial implications were all adding to their stress. Talking and drawing on the experience of the staff made it seem possible. Leaving with a plan had helped.

As our relationships are unique so is everyone’s mesothelioma. The one size fits all approach does not work for treatment of mesothelioma nor does it work when supporting patients and families.

No Cure

Lisa Hyde-Barrett, RN Mesothelioma NurseAs I was walking down the hall yesterday I heard someone saying, “My cancer is not curable but is treatable.” To date we have no cure for malignant mesothelioma, but many more treatments are available than ever. Surgery, radiation, chemotherapy, immunotherapy, alternative therapy, and clinical trials are all options for the Meso patient. This may or may not seem like a lot of choices but looking back to 10 years ago- it is huge. To have an option has not always been the case when dealing with a mesothelioma diagnosis.

Another benefit that was not so prevalent ten years ago is the support therapy that is available because of social media. I have cared for so many patients who have participated in support groups on-line, which have helped them through their mesothelioma journey. They may not be for everyone but for many they have helped make the journey less lonely.

In the United States a rare disease is defined as a condition that affects 200,000 people or less. Rare diseases, also known as orphan diseases, fall into that category because drug companies are not interested in developing treatments. This research can be costly and only a small population will benefit. Rare diseases need champions and with mesothelioma the community has champions of many different backgrounds and expertise. Although there are many treatment options, not everyone is a candidate for all options. Despite what you want, your disease and body determine the treatment that will be offered.

If you have been diagnosed with mesothelioma, ask yourself what it is that you want. The most important thing is doing what you want and having peace of mind during the journey. Surround yourself with knowledgeable professionals who can explain your options and the disease. Mesothelioma Awareness Day was celebrated on September 26, 2018. Many people shared on social media their loved ones who were and are affected by mesothelioma. As I scrolled through the entries it was staggering how many people have been affected. The number of people in someone’s life family, friends’ acquaintances, relationships that are changed due to a diagnosis of malignant mesothelioma. The pictures make it so much more real than just the statistics.

The statistics of survival are not favorable but again that too has improved with knowledge and research. If you have been diagnosed with mesothelioma or your family member has, you will agree the facts are overwhelming and scary. The flip side is that there are people currently living their lives taking trips, spending time with family and friends, and doing what they want who are being treated for mesothelioma.

This year has been an exceptional year in the world of mesothelioma. We have seen progress and hope. There have been survivors and memories being made by some while undergoing treatments. In the words of one of the first mesothelioma treatment pioneers, the late Dr. David Sugarbaker, he always spoke about hope and that it had to be part of the equation. Make the most of your days, stay positive and keep moving.

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