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Posts by: Lisa Hyde-Barrett, RN

Mesothelioma is a “Rare Disease”

Lisa Hyde-Barrett, RN Mesothelioma NurseA rare disease, by definition, must affect only a small percentage of the population.  In the United States a rare disease is defined as a disease that affects fewer than 200,000 people in the country. Worldwide, there are over 6,000 rare diseases that affect over 300 million people. Each disease is unique in its effects and treatment, and due to the rare nature of these diseases, they often lack the same resources and treatment options as more common health problems. People suffering from rare diseases, along with their caretakers, often have difficulty finding experienced doctors. Often it requires multiple appointments and experimental medications to determine a health care path. Managing a rare disease can be physically, emotionally, and financially challenging. It is extremely stressful without support systems of others who suffer from the disease.

Every year there is a specific day that is set aside to recognize these diseases, usually the last day of February each year. This year, it will be February 28, 2019. This year’s theme is “Bridging Health and Social Care”. What exactly does this mean?  It is focusing on the challenges of coordinating care between the medical field and social and support services. If you have been fortunate enough not to be affected by one of these diseases, you would be astounded by the amount of time and energy that a patient or a caregiver expend daily to fight their “rare disease.”

Mesothelioma falls under the “rare disease” category. Approximately 3,000 people are diagnosed with this disease annually. While there are many treatment options available at Mesothelioma Centers and larger health centers, these facilities are not always easily accessible.

As patients and families struggle with this disease, we know there are options: there are numerous support services for this disease, as well as travel assistance programs which may be available to you. Every week, we see patients from all over the world come through our doors with hope. Many patients need to travel far and wide to arrive at the doorsteps of a Mesothelioma Center. However, by travelling to a major Mesothelioma Center, patients are giving themselves the best opportunity to fight this disease. The healthcare teams at Mesothelioma Centers understand travelling is not easy. Centers are usually set up with social and support services to help during these challenging times. Experience from treating others has taught us what helps. Although mesothelioma can be frightening as a “rare disease,” the medical community is making great strides to fight it. We are extending lives, and working towards a cure.

As you educate yourself about the options in front of you, know that many others have been in your shoes and followed this path. When feeling overwhelmed by it all, reach out to a Mesothelioma Center, ask questions, and become connected with our supportive and tight-knit community.

Advocate – An Important Helping Hand

Lisa Hyde-Barrett, RN Mesothelioma NurseBeing an advocate is one of the most giving and selfless things you can do to help your loved one. From our years of experience, we have found advocates are critically important to both doctors and patients. It is wonderful when patients have a family member or friend who can take on this role. It is not an easy job and requires one to be on their toes and stay level-headed. It is very important that advocates understand their responsibilities and are ready for this position. Being an advocate often includes accompanying a loved one to medical appointments, monitoring medications, scheduling appointments, overseeing nutrition, planning exercise, and helping with overall well being.

There is no rule for who steps up to be an advocate. It is often a patient’s significant other, but can be their child, relative, neighbor or very close friend. While you might find classes and information on advocacy, most of learning how to be an advocate happens on the job. It can be very difficult to suddenly become the person who needs to remind their loved one to eat, drink, walk or take medicine. It helps when this is done with compassion and love.

As an advocate, it is very important that you communicate with the medical team and take the stress off of your loved one. Even scheduling appointments can be very difficult and emotionally stressful for a patient undergoing chemotherapy and battling mesothelioma. As an advocate, fight for your loved one calmly and with the strength that your loved one does not have at the moment. It is important that you be your loved one’s rock throughout this often stressful, confusing, and chaotic. Although your heart might be breaking, by remaining focused and calm you are performing an invaluable role. It is one of the most sincere and important things you can do for your loved one.

We have seen the truly inspiring relationships between patients and their advocates. Although this is a very difficult time, you can become very close, create cherished memories, and help your loved one feel comforted and loved.

Christmas Thoughts

Lisa Hyde-Barrett, RN Mesothelioma NurseThe holidays can be very difficult times for anyone, but these weeks are extremely difficult when loved ones are suffering with an illness. It is difficult, even impossible to focus on the traditional ideas of holidays, shopping, cooking and family time. As the holiday season approaches many people will be in the midst of treatment, away from home and not feeling well. Some of our loved ones are no longer with us.

I spoke with a physician last week about what really matters to our patients, and to everyone – time with people who we love. Most people who are not well or who have lost loved ones to illnesses mostly want time with people. If you are the relative or friend of someone who is suffering from Mesothelioma it would be a blessing to spend some time with them to brighten their day. It would also be a blessing to let a caregiver know that you care and support them. Most of us want to know that others think about us. Spending time together is the most valuable and memorable gift you can give someone. It is so important to visit people who are isolated because of illness. It means more than gifts. Even a friendly telephone call is a blessing. Young children stopping by to say hello bring energy, life and laughter. Time together simply cannot be measured.

As nurses we often visit with Mesothelioma patients and experience firsthand how grateful a patient is to receive a visit from a new or familiar face. We can only imagine the joy a loved one will bring to a patient. The visit will help you too. Many times, we visit patients and we comment on how much better we feel after we have seen a patient. The emotions and mood elevation one may gain from visiting a loved one or friend is very surprising.

Holidays are very difficult for those who have lost someone. Feelings and emotions are complex. The absence appears to be more pronounced around the holidays and causes heartache and feelings of sadness and loneliness. One of the things a loved one should focus on is what your deceased loved one would want for you. Most would want you to be happy, and to care for yourself, and surround yourself with other loved ones. There was a time when you spent most of your waking hours, with minimal sleep, tending to your loved one who needed you. With no regret you were glad to be the one who could do this and provide the needs and love that were required. Now it is the time to take care of you. That is what your loved one would want you to do.

Allow yourself time to heal, be with others and if you need emotional care allow someone to help you. This is a time to heal. Surround yourself with loved ones, eat healthy, exercise, start walking and regain your fitness. It is difficult to lose someone or care for someone but the best thing you can do for yourself is be kind to yourself. Think of the happiest of times with your loved one and surround yourself with people who will make you feel good.

Our blessings and best wishes to you all.

Happy Holidays!

Mesothelioma Expertise

Lisa Hyde-Barrett, RN Mesothelioma NurseResearching “mesothelioma” can be very confusing. You hope for accuracy and truth when you are desperate to find the information you need. We write from our experiences actively caring for mesothelioma patients. There is an immense amount of information on the internet, and some is quite accurate. Ours, however, is unique because we are in contact daily with people who have mesothelioma. We watch some people struggle with the disease, and see others learn to live again. We have the distinct advantage of truly knowing people with mesothelioma and we can put a face to symptoms and side effects.

Today’s blog is meant to reassure you that the information we provide is from our personal experience caring for patients who have been diagnosed with mesothelioma. This is a form of expertise, and we want to share this expertise with you. We do not profess to have all the answers by far, but we have true experience.

Over the years, we have built on these experiences. We have had the privilege of knowing and working with families, patients and other members of the team involved with patient care. We are in constant communication with physicians who care for these patients. When we see that a patient is having an issue, we are only a phone call away. We work with one of the most experienced groups of physicians who care for mesothelioma patients. We are Registered Nurses working with a team of mesothelioma specialists.

We thrive on the knowledge that the specialists are working towards a cure for mesothelioma and dream about the day that there is a cure for this disease. Until then, it is our goal to provide you with accurate information.

My goal in writing this is to advise you to be careful what you read and make sure that your information is relevant. We do not have all the solutions, but we care for patients and write about our experience. When searching out your information, take the time to find out the source of the information. Are these people writers? Are they connected to mesothelioma patients? Do they have any hands-on experience with this disease? Most of us assume that one writes about a very specific topic they must be an authority, but this is not always true.

This diagnosis is a challenging one for patients, loved ones, family members and friends. In this blog, we hope we give you accurate and helpful information, and please contact us if you need to know more about our expertise and credentials.

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.

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.

Care for The Caregivers

Lisa Hyde-Barrett, RN Mesothelioma NurseThe role of the caregiver is an underestimated position when someone is ill. With a serious rare cancer diagnosis like malignant mesothelioma, the caregiver is a vital participant in the team. When does one begin to assume the role of the caregiver? Who decides who will take this role? Usually the caregiver is someone who has a close relationship with the person diagnosed, a wife, husband, a significant other, an adult child of the patient. Statistically it is usually a woman who assumes this role.

The responsibilities that come with this role can be overwhelming. It is a difficult role as it can affect the caregiver physically, psychologically, and emotionally. Most people are unprepared for this new all-encompassing role.

The number of individuals who at one time in their lives will assume a care giver role is staggering. According to the National Alliance for Caregiving in the U.S. and AARP, there are 35.2 million Americans who provided unpaid care to an adult 50 years of age and older within the last year.

For caregivers of mesothelioma patients, the challenges can be daunting. It can start with educating yourself about a rare disease. Getting familiar with medical words and phrases that are as difficult to pronounce as they are to understand. Accompanying their loved one to many different appointments, traveling to consultations, taking notes, assisting with physical care- bathing- grooming. Logistically organizing appointments, lodging, medications, all while emotionally supporting your loved one.

For the caregiver, mesothelioma diagnosis and the havoc it reeks can become a focal point of your life. The diagnosis can alter your life irrevocably as well as the person diagnosed. In addition to these endless tasks there is the difficult conversations that must be had. What are the patient’s wishes? What are their goals of treatment, their fears? What do they want? The answers might not be clear, but the topic has been addressed and it is on the table.

Unfortunately, there is no set of rules that one can follow to become a caregiver. In some ways it is on the job training whether you are ready or not.

As important as the role of caregiver is to a person diagnosed with malignant mesothelioma, the vital part for the caregiver has to include taking care of themselves. Over the years we have seen fantastic caregivers who forgot about themselves. They have suffered and continue to suffer long lasting effects of that decision.

On the Family Caregiver Alliance website, there is a page dedicated to care givers self-care. Some of the points are things that we see every day with caregivers of mesothelioma patients. Some caregivers learn so much about mesothelioma that they become experts. Another suggestion is to get support. There are support groups available, talk to people if support groups do not interest you. Forgive yourself -no one is perfect and no one no matter who you are can take care of someone 24/7 without a break. Allow time for yourself. You had a life before this diagnosis. Allow yourself time away to recharge. One of the most important points they make is to change guilt to regret. Guilt is you did something wrong, regret is that you are in a difficult situation and sometimes you have to make difficult decisions, but they are not wrong.

Care-giving is challenging and all encompassing, remember to be kind and forgiving to yourself and to take care of yourself.

The Journey Can Be A Roller Coaster

Lisa Hyde-Barrett, RN Mesothelioma NurseThe journey with mesothelioma can be a roller coaster of highs and lows both physically and mentally. Many times, we hear families, loved ones, or caregivers say that the patient was not in the state he or she was in before their surgery occurred. It is important to know that as someone undergoes treatment for mesothelioma, so much happens physically and emotionally and change should be expected. The physical portion most people can easily understand, they can see the pain, the scar, the tubes coming out of different parts of the body.

The emotional part is more difficult to understand. This disease has forced the patient to face their own mortality. They are now reliant on people to help them with everyday skills, a task that can be a lot to take in. As you walked into the hospital, it is unfathomable to think that you are going to get out the way you came in. Not only are you dealing with major surgery, but now you have been robbed of your independence.

As you progress through your recovery and eventually home, the reality sets in that you have mesothelioma and the fight must begin. How are you going to move forward, get back to where you started? This time can be quite emotional, and if you have family or friends helping you this may be quite beneficial. I actually saw people recover independently at a rehab but that too can be a rough road. It can be done, but it seems as if that makes it more difficult not to have support to help.

As you sit day to day and mentally feel down, the recovery moves forward but it may not seem fast enough. A good idea could be to keep a journal of your activity, mood, physical appearance, and weight. Most people have smartphones that you can take a quick photo each week as you progress through your recovery. A scale is an easy device to monitor your weight and encourages you to eat healthy. Your activity can be easily monitored if you keep the same route. You can jot down when you go beyond your previous walks, or jot down how many flights of stairs you took that day. All this information can be helpful, but I suggest that it be reviewed once a week as checking day to day may seem too daunting. As you are tracking your progress, try to scale your overall mood for the day, maybe use a numerical scale that is from 1-10. One could be just a lousy mood, frustrated, pain, etc. and ten could be a mood of joy, gratitude, happiness, etcetera. All this information can be helpful when you are able to reflect that you are making progress while you may still experience feelings of frustration.

Recovery from mesothelioma can be difficult, long and hard. Try to surround yourself with positive people and don’t beat yourself up. Remember we all only have today and allow yourself a bad day now and again. When the good and great days come be happy, celebrate and share with others. The journey has begun and now you have a say of how it will move forward.

It’s Okay to Talk About Dying from Mesothelioma

Lisa Hyde-Barrett, RN Mesothelioma NurseThe process of dying can be awkward, unpredictable and messy. We all like to have some control of our lives but this last final phase keeps us all on our toes. For many people this phase of life, is approached reluctantly with fear. To face dying, makes us face our own mortality and we begin to question ourselves, ideas and the world around us. For most of our lives we plan, we have goals, we take steps to reach those goals. For many this is an orderly process, and we take pride in accomplishing our goals. Dying is uncharted territory. We might have an idealized goal of a peaceful death surrounded by family at home, but the path to that goal is not one we have experience with.

As we prepare to care for people in the final stages of life we need to help them have peace with their decision. A personal choice of this magnitude cannot be dictated. Many people who come to terms with their disease often opt for comfort measures, in hopes that they will no longer be plagued by symptoms of the disease, multiple doctor’s appointments, medications and the side effects. This individual choice is what is right for that person on their own schedule.

The good news about coming to terms with ending aggressive treatment is that there is some rest and the energy that was spent on treatment, can now be focused on what the patient would want. Possibly it is just being home with loved ones, resting, have conversations at ease, and being with familiar surroundings. Patients don’t often come to a decision about ending treatment abruptly these are usually well thought out. When the body will not cooperate with your mind often this is the time that a mindset change.

Many time patients feel they are quitting, giving up, or their loved ones want them to pursue treatment for a little while longer. Whatever the reasons in the end patient and families want to know they did everything they possibly could. People do not want to be left behind thinking that there was one more thing they could have done that would have changed the results. It is hard not to think about ourselves, but the focus should remain on the patient offering peace and dignity, respecting their choice.

As we know there are no cure for Mesothelioma, but we continue to try every day. We are aware that 3000 patients are diagnosed a year and 2500 dies from asbestos related disease each year. Each of those people are unique with their own life experiences, influencing their decisions on treatments and dying. As the years progress we continue with more treatment options and are learning to treat symptoms of the disease better. In the end it reminds us of what asbestos can do and still continues to do. For the people who continue to bravely fight this disease, get involved with clinical trials, have surgery, chemotherapy, radiation, and all the other procedures you endure thank you. Without you the treatments would not be as advanced, and we know so much more today than we did 2 years ago. Someday this disease will hopefully have a cure and people will no longer suffer, and all deaths will be where the person wanted, and the way they wanted.

You Are Not A Number

Lisa Hyde-Barrett, RN Mesothelioma NurseAs people progress through their journey of Mesothelioma often they believe that they just become another patient or a number. From the beginning of their journey all they hear are numbers. There are 3000 cases of Mesothelioma diagnosed a year. Your odds of survival are x percent. There are so many numbers thrown around that no doubt people wonder how they even count as a person.

Well I disagree. As we visit Mesothelioma patients, we began to know them as individuals and develop relationships with them. These patients become part of our daily thought process. We worry for them, we worry about their mental health, their own thoughts and families. Over the last few weeks this has reminded me how much we and other medical professionals are emotionally invested.

As I sat today and spoke with a doctor how various patients, outlooks, patient families, and upcoming worries it reminded me of the continual thought process that is poured into each of these individuals. We used to hear from a physician who would say you may feel like you are sitting and waiting for something to happen, but please know that things are happening despite what you see or don’t see.

When you lay awake at night and cannot fall asleep know that someone is thinking of you as well. When one patient starts their medical journey, the emotional investment begins. The mental and physical investment begins as well, but so much is poured into each and every case.
To be honest with you we speak about patients and families as if they are our own families or loved ones. This is a long journey and we see you at the most vulnerable state and try to build upon that. I don’t know of any other disease that commands such an investment that the mesothelioma team gives to each patient. It really does not seem like it is just the nurse, but it encompasses everyone from the social worker, to the chaplain, to the oncologist, surgeon etc. to the staff who can run the hospitality house.

Mesothelioma can make you feel alone, isolated and fearful. Please know you are not just a number, you are a person who someone cares for, a medical team who is working diligently to improve your life, and above all you are a fighter. You were diagnosed with this disease, which was completely baffling to you and your loved ones but there are medical centers out there who care and want you to be better. Yes, we all know there is no cure but there are treatments, that can help provide relief from symptoms and extend your life. Know that you are not a number, you are a person who is important to many.

Comfort Care

Lisa Hyde-Barrett, RN Mesothelioma NurseWhen it was announced on Sunday April 15th that Barbara Bush, the wife of one President and the mother of another, would be receiving comfort care, there was confusion as to what that meant. Comfort care refers to focusing on the symptoms of a disease and not focusing on curing the disease at the end of life. Hospice and palliative care are forms of comfort care. Comfort care is about maintaining dignity and managing patient’s symptom and maximizing the quality of the time that a person has left. The goal is care and not a cure of the underlying disease. There is a shift from fighting the disease to fighting the symptoms, the pain, and shortness of breath or whatever the symptoms may be.

The decision to change the focus of care is a personal one. Mrs. Bush chose to stop trips to the hospital for further aggressive treatment. Her choice and the choice of any patient who choses comfort care at the end of life, does not mean the patient is not cared for. We are all mortal, we all have a limited time on this earth. Although we know this in our head most of us avoid talking and dealing with this inevitable conclusion to our time on earth. Mrs. Bush announcement included a quote, “Life has been good and while more would be great this is enough.”

By opening up the conversation regarding care at the end of life it brings attention to a topic that most people are not comfortable with, our own mortality. April 16th, 2018 had been declared National Healthcare Decision Day. Medicare has a Voluntary Advance Care Planning benefit for people to make important decisions that give them control over the type of care they receive at end of life, and when they receive it. There are organizations that are trying to bring the importance of thinking about end of life issues and what our wishes are, to the forefront. The Conversation Project, End of Life Resources for Patients and Families, www.caregiver.org, www.nia.nih.gov, are all resources that can be used to start the conversation.

The choice is a one that not all family members arrive at or understand in the same time frame. Some patients look upon this decision as empowering. There is also some confusion as some patients and family members look upon this as “giving up.”

For many patients with malignant mesothelioma the end of the journey may come after months or years of dealing with disabling symptoms, along with having some quality time. It is very important that you speak to your medical team and make your wishes known.

Thank you, Barbara Bush for sharing so much of your private life and most intimate wishes.
Because of you this will give the power and courage to help people guide themselves through the pathway to the end of life. Hopefully the door has been opening to change the culture to openly talk about what matters most to all of us at end of life and share it with our loved ones.

Dignity

Lisa Hyde-Barrett, RN Mesothelioma Nurse“All human beings are born free and equal in dignity and rights.” In 1948, after World War Two this declaration with the Universal Declaration of Human Rights, it is thought of as the beginning of the modern-day human rights movement.

Dignity is the one thing we all value and take for granted. We just assume we are going to function independently and our goals will be met. Diseases like Mesothelioma try to rob individuals of their dignity. It is hard as a loved one to witness a person struggle and not jump in and take over. I have watched an individual over the last few months become plagued by the disease and continue to maintain his independence and dignity. From an outsider’s viewpoint everything seems to be such a struggle and it is heartbreaking to watch. We recently had a conversation about some of his activities that he does independently. As he explained to me, the physical symptoms are the hardest. Shortness of breath is one and the fluid has made his mobility almost impossible. There are a few activities that he still enjoys and feels he can still do. As he continues to control his medical journey independently he has learned to ask for help when needed. The activities that he performs independently he hangs onto and is unwilling to give up despite the thoughts of others. Perhaps his family or friends could do it quicker or better, but he still can do it. We must respect what people can do despite how it appears on the outside. We all need to know we can perform somethings independently.

As we watch so many people battle with their illnesses we realize all we really can do is support them. Sometimes just watching can be the hardest but possibly the most important. Often, we can be guilty thinking “if that was me I would do this.”. Truth be told I believe no one really knows what they would do. For this individual he continues to fight despite what others think he should do. The one thing Mesothelioma has not stolen is his power to make decisions about how he will travel through his journey. Choices are freedom and he continue to make these for himself.

This has to be one of the hardest parts of watching someone deal with Mesothelioma, how it steals someone’s self- worth. How do we help someone preserve this component that makes us all individuals? Being able to care for ourselves independently gives us self-worth. For this person the mere task of dressing, putting on shoes, still provides self-worth. It would be easier for a loved one to step in and do some or all of it, and sure would be quicker, but we must allow a person to continue to provide himself with the simple tasks of caring for himself. No doubt the fight and will are still there so we must support these people. Taking over for a loved one who is having difficulty with anything can dash their hopes and dreams. If we don’t allow patients to try, then what have we left them with.

Review Your Nutrition

Lisa Hyde-Barrett, RN Mesothelioma NurseThe role of nutrition before, during, and after a diagnosis of malignant mesothelioma or any cancer is being studied and the results are constantly evolving. The basic information is that your personal diet should fit your taste, contribute to a healthy lifestyle, and be affordable for you. Generally, it is recommended that your diet be low in salt, saturated fat and cholesterol, and high in fruits, vegetables, whole grains and healthy fats.

The National Cancer Institute has a division, Nutritional Science Research Group, in the Division of Cancer Prevention, whose purpose is to, “promote and support studies, establishing a comprehensive understanding of the precise role of diet and food components in modulating cancer risk and tumor cell behavior.” On Cancer.gov, there are results of studies that have been conducted and their connection with cancer.

Research has shown that you can reduce your chance of getting cancer or improve your chances of recovering from it by making conscious decisions about what you eat. We all have heard through the media many propositions for what someone should eliminate but one of the most promising diets is a plant-based one which eliminates meat, dairy and eggs. Back in 2012 there was an analysis of all the studies that concluded that vegetarians have significantly lower cancer rates. A study funded by the National Cancer Institute showed that vegans have lower rates of cancer than meat eaters and vegetarians. What is it that makes vegan and vegetarians less prone to cancer? When eating animal protein, the growth hormone called IGF-1 is increased. By performing studies that collect blood from meat-eaters, vegans, and vegetarians and placing it on human cells growing in a petri dishes, the results showed that those who ate more plant- based diets were found to suppress the growth of different types of cancer. Additionally, research has shown that being overweight can be a risk factor for cancer.

When you are diagnosed with malignant mesothelioma you may lack hope and doubt that a diet change is going to improve your outcome. Despite what the cancer will bring, you may feel better by just making some positive changes. Your whole diet does not have to change overnight but simple steps can improve your overall health and outlook. The American Cancer Research encourages us to eat a diet where our plates are filled with 2/3 of plant- based foods.

We know that Mesothelioma is not related to diet but the overall control of how you treat and fuel your body may feel empowering. Possibly you do not want to change your diet and you are satisfied with your nutritional status and that is fine. Although there is not one study that could provide all the answers, find what is right for you and give it a try.

There are a lot of healthy foods and vitamins widely available to all. Supplements can help a limited diet but, unfortunately one vitamin cannot take place of a food that would otherwise be full of it. Many times, vitamins work with other vitamins and not individually so that should be considered when making food choices. Remember it is quality over quantity; if you cannot get fresh vegetable, try the frozen version. Always remember something is better than nothing.

Comprehensive Mesothelioma Centers

Lisa Hyde-Barrett, RN Mesothelioma NurseOne may ask what happens when you arrive at a comprehensive mesothelioma center. What is the difference between a local doctor and a doctor with years of experience? First of all, a comprehensive mesothelioma center offers customized treatment for each individual. This is not a cookie cutter package where everyone has the same treatment method. Every diagnosis is unique and treated individually. A person will have a battery of tests that will tell exactly where the mesothelioma is and what condition the body is in. There are a variety of options that may be presented to you. While treatments may appear similar to another person’s, I assure you no two treatment plans are the same.

Most often the hardest question asked is what do you want? As we sit in a generalized orientation meeting it is explained that this factor is just as important as any other medical decision. Some people despite how minimal or advanced their disease, want everything done. Other patients may take a different route and choose to take a more passive option. Emotionally this can be difficult. This question requires reflection and conversations with your loved ones. Most people who enter our center have decided they want some treatment but have no idea what their options are. There is no right or wrong answer, and everyone is entitled to make their own decision.

Everyone’s body is different, with its own strengths and weaknesses. This is another reason for all the tests that must be done. Each organ needs to be evaluated for the treatment plan. Some people feel that all of these tests are overkill. However, it is important to remember knowledge is power. Think of your body as a machine with its own assets. While nothing is one hundred percent guaranteed, the more information we have about your body the better we can devise a treatment plan. The other factor involves one’s mental state, what has this diagnosis done to you mentally? If your diagnosis has caused anxiety, restless nights, fear and worry, you are not alone. These emotions are real and can make you feel overwhelmed. Most comprehensive centers offer social workers, chaplaincy and psychiatrists. A serious illness like this can cause emotional issues and you are not alone. Researchers at Baylor University Medical Center have found that 77 percent of people with a terminal illness experience depression. Remember there is no right way to feel about your illness, but it is good to identify these emotions and share with people how you are feeling. Another feature of a comprehensive mesothelioma center is support groups. These centers often provide support groups related to your illness. There are other people who are going through what you are currently experiencing or have been through something similar.

At the end of the day one needs to know they made the best choices possible about their health. It really is about being comfortable about your decisions. Not everyone chooses to travel to a mesothelioma center and that is fine. Often people prefer to stay close to home because that is what works. As research and treatment options continue to progress hopefully the ingredients to a successful treatment plan will be shared and will be available to other areas of the medical community.

Adjustment After a Mesothelioma Diagnosis

Lisa Hyde-Barrett, RN Mesothelioma NurseWhen someone receives a Mesothelioma diagnosis, many changes occur in their life. One of these is their identity as they are now a cancer patient. With this new identity, a new lifestyle also ensues. The new lifestyle may include chemotherapy, recovering from surgery, taking new medications and leading what seems to be an entirely different life. What consumes the bulk of a patient’s new lifestyle is often travel to and from their appointments. Fortunately, as you recover and move further away from treatments, less time can be spent in appointments.

Once you begin spending more time at home, you may ask yourself where do I go from here. Recovery can take up to 9-12 months and with that, many life adjustments may be necessary. It can be challenging to grapple with the concept that life that was once deemed impossible and now you are told that you are ok. No longer are you a cancer patient but you still might not know your identity. This can be a tough time for an individual but relying on your support group can be helpful at a time that feels quite difficult.

In order to better prepare for what your life will be like, talk to your doctor about what to expect from your body. Ask questions like “Will fatigue always be like this?”, “Will weight gain be helpful?”, and “When should I reach out if I think something is not right?”. There are a host of emotions that you may experience, and support groups and counselors are a great resource in helping you through this transitional time. Possibly during treatment, you thought of something you could do once you go home, now maybe this is the time to do it.

Another issue that many cancer patients face, is fear of recurrence. For some patients this occupies their thoughts and makes enjoying the present moment impossible. Patients have described feeling, “waiting for the sword to drop and end it,” “being sick for a week before a follow up appointment- every time- not sleeping, nightmares, feeling terribly fearful and sad.” Others become uncharacteristically short and uncommunicative with their loved ones. This happens to some patients, but there is help. Talking to a mental health professional, letting your medical team know that you are going through these emotions, support groups, all can be helpful to recognize this very real state of mind.

Finding a new normal may take months. Many survivors say that cancer changes them and how they feel about life. The things that were once so important are not such an issue. People often have mixed emotions about ending treatment. Some think they should celebrate, some feel anxious about this new freedom and many times it is a time for re-evaluation of your priorities.

To make this adjustment -assess your life. Are you doing what fulfills you? Are you doing what is important to you? Focus on each day and expect good days as well as some bad moments. Doing things at your own pace is important. Success is not a race.

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