Category: Nurse’s Corner
National Healthcare Decision Month is a Time for Mesothelioma Patients to Plan for Care
There are two life experiences that we all share. We are all born, and we are all going to die. We are all going to die, but no one wants to talk about it. If we do talk about death, it is usually in general terms – not from our own personal perspective. Recognizing this issue, there are resources to help all of us think about what we want at the end-of-life.
April has been designated National Healthcare Decision Month, with April 16 named National Healthcare Decision Day. There is a collaborative effort of national, state, and community organizations to help guide you in talking about what you want at the end-of-life, what type of care you want to receive and when you want to receive it.
There are many different possible scenarios for how our lives will end. No one knows when or how, but to let your wishes be known to your loved ones can make a very stressful time less so. There are several organizations that are trying to educate how we view these important topics.
The Conversation Project has starter kits to help get you started with talking about the end-of-life. According to its website, “emphasis is having the conversation on values- what matters to you- not what’s the matter with you.” One of the statistics quoted is that 90% of people say talking to their family and friends about end-of-life is important, but only 27% have actually had the conversation.
Other resources available include Caring Info, Aging with Dignity and The Art of Dying Well.
Malignant mesothelioma is a complicated disease. Some patients are living with this disease as a chronic disease. The disease can take time to evolve to the end-of-life for some, and for others it can be a swift, cruel ending from diagnosis until death. A person’s journey with mesothelioma is individual, that is why it is vital to have a relationship with your mesothelioma expert that knows what you, as an individual, want at the end-of-life.
We have seen many patients that assume that if the disease progresses, or a complication arises, it is the end of their life. Everyone’s course is different, don’t assume that one person can compare to the next.
It is not enough to say that, “I don’t want to end up on machines.” Nobody does. What is important and what is not important to you is what you need to explore and talk about with your loved ones.
Start the process. Think about what is important to you, and let your family and doctor know. This is important for all of us!!!
Sources:
- The Conversation Project
https://theconversationproject.org - Caring Info
http://www.caringinfo.org - Aging with Dignity
http://www.agingwithdignity.org - The Art of Dying Well
http://www.artofdyingwell.org/talking-about-death
Fear is a Real Part of a Mesothelioma Diagnosis
When a doctor tells the patient has been diagnosed with malignant mesothelioma, we sometimes see a paralyzing fear in both patients and their family members.
This past week, at a new patient orientation meeting designed to introduce the support team, give general information regarding mesothelioma, explain what practical supports are available, and to generally reduce a patient’s and the family’s anxiety, the presentation did not seem to be helping one family. By the end of the meeting their fear was still palpable.
Fear, as defined by Merriam-Webster, is “an unpleasant often strong emotion caused by anticipation or awareness of danger.” Researchers have identified in the literature three major cancer related fears: fear of death, fear of recurrence, fear of stigma.
The fear of death and a cancer diagnosis can be paralyzing. Although, for some, the amount of time further away from the diagnosis the patient gets, fear begins to diminish. The emotional scars that being diagnosed with cancer can inflict, all individual factors, contribute to when a person is able to resume a “new normal life.”
The ‘fear of recurrence’ emotions can also vary in patients, ranging from worry and sleepless nights, to thoughts of suicide. On the positive side, once diagnosed with a recurrence, the person is already more knowledgeable about their disease, able to navigate the healthcare system, and know that it is possible to return to a “new normal.”
Cancer diagnosis can still carry a stigma. Changes in the dynamics of family relationships, role changes in a relationship, ability or inability to return to work can all stigmatize a person with a cancer diagnosis. The stigma can be in how the patient sees himself, or how he thinks others perceive him.
Fear is a four-letter word, as is hope. When facing a serious cancer diagnosis like malignant mesothelioma, the most important thing is to not lose hope.
At the conclusion of the meeting while speaking with this family, they were able to verbalize their fears. The patient was elderly, the onset had been abrupt, and they had heard that surgery was very “rough.” They were not willing or ready to lose their husband and father to this disease. Once their fears were acknowledged, we were able to remind the patient and family of the facts. His general overall physical fitness, his early diagnosis, localized disease, type of mesothelioma, and a warm caring family to help him through and around obstacles in the future, were all positives in their journey with mesothelioma.
Balancing fear and allowing for hope is an important part in the treatment of malignant mesothelioma.
Nurse Explains the Immune System and Mesothelioma
This winter the flu has been prevalent, and has affected a record number of people. The flu vaccine can help prevent people from getting a particular strain of the flu, and if they do get it, it may be less severe. Why do the flu and other common ailments affect people so differently? How does our body protect us against diseases? Do products that claim to “boost” our immune system work?
The key system that the body uses to defend against diseases is the immune system. The immune system is a complicated system that works as a balanced network all over our body to protect us against disease.
There are a lot of statements claiming that by taking a certain supplement, living a certain way, following a specific diet, or even drinking a certain shake, you can “boost” your immune system. Is that even scientifically possible?
At present there are no scientifically proven direct links between lifestyle and enhanced immune function. There is evidence, however, that every part of our body functions better when following a healthy living lifestyle. This includes getting enough sleep, reducing stress, not smoking, eating a healthy diet high in vegetables, exercising regularly, drinking alcohol only in moderation, maintaining a healthy weight, and washing your hands frequently.
The cancer community and the mesothelioma community have been hearing a good deal about research into the immune system. Immunotherapy is a treatment that uses certain specific parts of the immune system to fight disease. Immunotherapy works in a variety of ways by stimulating the immune system to work harder, or by giving the immune system man-made proteins to fight the cancer cells. Immunotherapy can work with existing therapies to fight cancer or it can be the principal treatment depending on the patient‘s cancer. Targeted therapies involving activating and harnessing targeted cells in the immune system have shown promise for some patients with malignant mesothelioma.
People diagnosed with malignant mesothelioma, or any other cancer, and their caregivers, need to take care of themselves. A healthy lifestyle is a positive way to help your overall health. Malignant mesothelioma is a complicated disease, there are no easy answers, or instant cures, but the immune system is proving to be a key component in the search for a cure. Until the researchers unharness the workings of the immune system, it is in everybody’s best interest that we all adopt a healthy lifestyle! Take care of yourself!
Mesothelioma Patients Leave Lasting Gifts For Loved Ones Left in the Wake of the Disease
Facing death is probably is one of the most difficult issues that we have to deal with as humans. For some, there is warning and time to plan, for others though, death comes unexpectedly. The courage of people to think of others as they face their own mortality is something that is awe-inspiring.
As nurses we hear many stories and perspectives. Two women recently have done unselfish, thoughtful, amazing things for their husbands to help deal with their deaths when it happens.
Mrs. A is in her late 50’s, has been married for many years, has adult children, and is very social. She also has advanced, recurrent cancer and does not know how much time she has left. She has always been in charge of her and her husband’s social life. She was worried he might become reclusive when she dies. So she set up a social club for him and five other men who are friends and part of their social group. Now, the men meet once a week, socialize, watch a game, have a drink, and support each other. At first her husband was reluctant, but now calls them “his play dates.” The other men in the group also enjoy their “playdates” and rarely do any of them miss a week. Mrs. A now has peace of mind that her husband will have support when she dies; whenever that might be.
Mrs. B is in her mid 60’s, she has been married for a number of years. She and her husband are both professionals with busy careers. She has metastatic cancer and is facing her death. They have welcomed a kitten into their home. Mrs. B. feels that will help make her absence a little less lonely for her husband. A kitten will not replace her, of course, but it can represent life and love and responsibility. Sometimes knowing our loved one will not be alone is comforting to the dying person.
In the face of their own mortality, both women have found comfort in thinking of their husbands. Both show courage and compassion.
Many people diagnosed with malignant mesothelioma are like these two women. I have seen many people more concerned about the effects of their diagnosis on their families, and how they would cope when they die, than on themselves and what they are going through.
Facing death takes courage. Reach out, talk about your fears, anxiety, or whatever is concerning you. We all know death is uncertain, but providing our loved ones with tangible support may help the dying, and provide some relief in the future for their loved ones.
Loneliness and Mesothelioma Is A Challenging Combination
Recently, the Prime Minister of England announced a new cabinet level position: Minister of Loneliness. When announcing the appointment, Prime Minister Theresa May called loneliness a “sad reality of modern life.” The campaign is being led by Tracey Crouch, undersecretary of sports and civil society in the culture ministry. They have started to work on an “England-wide strategy to tackle loneliness.” England is a country of 60 million people, and more than nine million residents say they often, or always feel lonely.
In the United States, the former Surgeon General Vivek Murthy has been bringing attention to the data that “are telling us that loneliness kills.” A report published in 2013 found that loneliness can impair health by raising levels of stress hormones and inflammation, which can then lead to increased risk for heart disease, arthritis, Type 2 diabetes, dementia and suicide attempts.
“Loneliness is the state of feeling sad or dejected as a result of lack of companionship or being separated from others,” according to the U.S. National Library of Medicine. There are multiple factors that can cause people to feel lonely. Social interactions are difficult for some and our busy society makes it difficult for some to form relationships and interact with others.
At the mesothelioma center, we are too familiar with loneliness. It is strongly suggested that you have someone with you to support you through your journey. A friend, relative, someone who can support you along the way. A few years ago at an orientation meeting for new mesothelioma patients, a quiet man sat among patients and families. He introduced himself and said he was alone through his journey. His few words left a lasting impression on many of us. Not only was he fighting a rare, aggressive cancer, he was doing it alone.
There is no doubt some people prefer solitude and have limited social interactions and relationships by choice. It is also true that you can feel lonely in a relationship or with a crowd of people that you know. The important thing is that we all recognize social connections are a fundamental human need.
We need each other. In the words of the song, ”Reach out and touch somebody’s hand, make this world a better place if you can.”
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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