Tips to Mesothelioma Patients from Rare Disease Sufferer, Sam Berns

Dealing with a rare disease like mesothelioma is not easy. Treatments such as surgery, chemotherapy and radiation are constant reminders of the battle raging inside your body. Managing cancer and its side effects can be stressful and depressing, but finding a way to focus on the positive aspects of your life can make a difference in your physical well-being and in your quality of life.

Sam Berns, a 17-year-old who recently passed away from the rare disease progeria, which causes rapid aging, was faced daily with obstacles, health issues and pain, yet he lived a full and happy life. When asked in an NPR interview what was the most important thing people should know about him, Sam responded simply: “I have a happy life.”

During an inspiring speech hosted by TEDx just months before he passed away, Sam offered his three secrets to happiness:

Focus on what you can do, not what you cannot do.
Surround yourself with people you want to be around.
Keep moving forward and continue to strive for something else.

“I try hard not to waste energy feeling badly for myself,” said Sam. He added that instead of ignoring the feelings, he “lets them in so that I can acknowledge them, and do what I need to do to move past it.”

Many long-term mesothelioma survivors are living testaments to Sam’s outlook. Mavis Nye has battled pleural mesothelioma for over four years, and she is probably one of the happiest people you’ll meet. Keeping mesothelioma in check is not easy, but Mavis believes that the key to her longevity can be attributed to her joy of life. And, Mavis spends time with those who bring her joy.

“Ray [her husband] and I enjoy doing so much together,” said Mavis. “We are laughing all the time and enjoy camping together in the motor home. That’s when we can really relax.”

Mavis’s attitude is echoed by another mesothelioma warrior, Lou Williams. Lou, who has battled mesothelioma for nearly ten years, raised a toast to herself and other mesothelioma patients on New Year’s Day, saying: “Here’s to being here in 12 months time and to living well in the meantime – doing what we love – travelling, spending time with family and friends and fitting as much into our lives as we do now!”

Jan Egerton also offered a New Year’s resolution to all mesothelioma patients, encouraging “everyone in the mesothelioma community, whether you are a patient or a caregiver, to keep a positive attitude and to remember that for every bad day there will be a good one.”

Just like Sam, mesothelioma patients are faced with an uncertain future. But even when Sam was at his lowest and in the hospital fighting another complication, he focused his thoughts on looking forward to when he would be better. He was buoyed by his fourth philosophy, “I never miss a party if I can help it!”

Emotional Stress Of Mesothelioma Diagnosis

Jennifer Gelsick Thinks of Her Father Three Months After He Loses His Fight With Mesothelioma

January 15 marked three months since I lost my Dad. A lot has changed, many adjustments have been made both internally and externally. Although life is not the same without him, we have been doing our best to carry on while carrying Dad with us.

For me, every day starts out a little differently. I used to call Dad every morning to check in, see how he was doing, and let him know what my plan for the day was. He loved hearing about our businesses. Where was Mikey working today? Do you have any meetings? He was so proud and interested, it made even the worst days of work worth it, knowing that I could share my stories with my Dad.

Every time something funny or remotely interesting happens, I always want to reach for the phone to call him. On Thanksgiving morning, as we got ready to make the trip to see my family, we put our dog in a sweater. It was funny and I knew Dad would get a kick out of it. I thought to myself, “Since Dad won’t be there today to see this, I’ll text him a picture.” Instantly, I felt a pain in my heart. They say that old habits die hard – how true.

Even though I have these lapses from time to time, I have been working hard to remember that Dad would want me to enjoy every second that God blesses me with, not to worry about him, especially since he’s now in Heaven. I talk to Dad a lot and that helps me. Sometimes, when I’m not sure what to do, it’s almost like he’s telling me what path to take. This comforts me so much; Dad always gave the greatest advice.

The pain of losing my father is still very fresh, but I feel like I can now handle it a little better. Talking to family members and friends, watching home movies, and just reminiscing about how wonderful he was now brings me comfort and not so much pain.

It’s been said that time heals all wounds. I’m not sure that this wound will ever be healed, but I guess we have to learn to tolerate the pain in some sense. With faith and trust in God, all will be well. For all of us who have lost a loved one, let’s keep working to find a cure for mesothelioma, so that others can avoid this wound.

Know more about Mesothelioma and how you can deal with it.

Farewell to Jan Egerton - Mesothelioma Warrior

A Fond Farewell to Jan Egerton – Friend and Mesothelioma Warrior

Jan Egerton, wife, author, friend to countless people worldwide, and a decade-long mesothelioma warrior, lost her battle to the cancer this morning. The mesothelioma community rallied around Jan, and her husband Gary, during this last week as Jan was released from the grips of the disease that she despised.

Since being diagnosed with pleural mesothelioma in 2004, Jan has undergone nearly every procedure available to mesothelioma patients including multiple rounds of chemotherapy, several surgeries, cryoblation, radiation and various other procedures to hold the cancer cells at bay. The journey with the “nasty cancer,” Jan told me one day, “is like a nonstop roller coaster.” Yet, throughout all she endured, Jan’s love of her husband, her beloved dogs, Bear and Lexi, and life itself never failed to shine through.

I reached out to Jan just over a year ago to ask her if she would allow me to share her story on Mesothelioma Help of her ups and downs with her battle against mesothelioma. However humble, she supported my stories about her, and also wrote her own articles for us to post to ensure a patient’s voice is heard. She said, “I hope that by sharing my information here, I can help others find the reality of what happens to people with mesothelioma.” I could not have known that a year later I would be mourning the loss of not just a courageous woman, but of a friend who welcomed me into her world with open arms.

Jan was a true inspiration and her positive attitude and fighting spirit gave strength to everyone in the mesothelioma community, and anyone lucky enough to have met her. And that was evident in the outpouring of support on Facebook over the last few days: “You are an inspirational fighter who will be sadly missed.” “Your survival story has and will be a beacon of hope to me for years to come.” “We are proud of the gallant fight you are fighting.” One person echoed everyone’s thoughts best, saying simply, “I hate you mesothelioma.”

Jan not only created a Facebook community for mesothelioma patients and families to meet and support each other, but she carefully chronicled her journey and hopes through her blog, “Mesothelioma – Jan’s Journey.” For Jan, writing was a release for her and it helped her deal with her cancer. Instead of “mesothelioma eating away at me from the inside, writing has given it a way to come out and keep me sane,” she said.

Jan wanted others facing a similar battle to know what to expect and to have someone to turn to for support. “We need to help each other, as we know more about this cancer than anyone else.”

Jan melded her love of writing with her desire to help find a cure for mesothelioma by writing a novel, “The Dreamweaver’s Choice,” and by donating the proceeds to the Mick Knighton Mesothelioma Research Fund. For Jan’s work with the MKMRF and her continued generosity to help fund research efforts by the organization, Chris Knighton named Jan Ambassador for MKMRF.

“Jan is a source of inspiration and hope to so many people living with mesothelioma,” Chris said. “What better person could we have as an ambassador than Jan?”

Jan never gave up in her fight to raise awareness of mesothelioma and to encourage others to fight with her. She reiterated this in her last blog entry on January 12: “To my fellow warriors, keep the torch burning.”

Godspeed, my friend.

All of us at Mesothelioma Help send our deepest condolences to Gary and to all of Jan’s family and friends during this very difficult time.

Find more of Jan’s insights into life with mesothelioma on “Faces of Mesothelioma.”

Jan’s book, “The Dreamweaver’s Choice,” is available for Kindle at Amazon.com. USA readers can order here, UK readers can access the book here. [Note: Jan also wrote a second book, “The Vial of Darkness,” and just received the hard copies from the printer.] If you would like to download our free e-book, please visit this page.

Mesothelioma & the Military: The Many Sources of Asbestos Exposure

Asbestos can cause mesothelioma and other cancers. Millions of Americans have died over the past 50 years from asbestos exposure. Those who served in the military – particularly the Navy – continue to develop asbestos-related illnesses.

How the Navy Used ACM Products

The Navy used asbestos containing materials (ACMs) for many purposes. According to the Department of Veterans Affairs War Related Illness & Injury Study Center, the Navy used ACMs on ships that were built before 1983 – many of which were in service for decades afterwards.

ACMs were used in many materials, including boilers, turbines, pumps, gaskets, valves, cements, adhesives and pipe coverings. They were extensively used in engine and boiler rooms. Navy veterans were exposed to asbestos when working in very close quarters, which has resulted in an increased risk of developing an asbestos-related illness.

Navy Veterans at Increased Risk

Navy veterans who are at an increased risk of developing an asbestos-related illness include those who:

were involved in repair of asbestos-containing equipment or removal of asbestos materials
served on ships whose keels were laid before 1983
worked in shipyards from the 1930s through the 1990s
worked below deck before the early 1990s
handled, removed or disturbed any ACM during duty
worked as pipe fitters, welders, boiler tenders, electricians, machinists and firemen before the mid-1990s

Unfortunately, many service members often worked directly with asbestos products in tight areas with poor ventilation and were not provided with proper respiratory protection. For many Navy service members, this was a deadly combination.

Serious Health Effects of Asbestos Exposure

Many Navy veterans were continually exposed to asbestos that caused them to contract asbestos-related diseases that affect the lungs or membranes around the lungs such as respiratory cancer (lung cancer and mesothelioma), asbestosis and other types of cancer:

Respiratory Cancer. There are two types of respiratory cancers that are generally caused by asbestos exposure – mesothelioma and lung cancer.
- Mesothelioma affects the mesothelium, a thin membrane that covers the internal organs of the body. Although there are several types of mesothelioma, most affect the membranes surrounding the lung (pleural membrane) or abdominal cavity (the peritoneum).
- Lung cancer forms in the tissues of the lung, usually in the cells that line the air passages. Lung cancer from asbestos generally does not manifest for decades after exposure. Cigarette smoking, along with asbestos exposure, can increase the risk of lung cancer by 50 to 100 times.
Asbestosis. Asbestosis is a condition that causes lung tissue to scar and become thick, stiff and fibrotic. It can be a progressive process and result in shortness of breath. It is often associated with a chronic cough or bronchitis and can eventually lead to disability and death.
Other Cancers. According to the Institute of Medicine, research shows that asbestos exposure can also lead to other cancers – especially those that affect the pharynx, larynx, stomach, colon and rectum.

The tragedy is that these illnesses could have been prevented if proper precautions had been taken to avoid asbestos exposure. Unfortunately, asbestos manufacturers failed to provide sufficient warnings of the health hazards of their products.

Navy Veterans Deserve Compensation for Their Injuries

Any Navy veteran who was injured due to asbestos exposure is likely dealing with costly cancer treatments and other medical expenses that wouldn’t have been necessary had the asbestos companies provided adequate warnings. Navy veterans deserve compensation to cover these costs, and an experienced mesothelioma attorney can analyze your situation to determine your possible legal options against an asbestos manufacturer, distributor or seller.

CaringBridge Keeps You Updated on Mesothelioma Patient’s Progress

I have recently been following a friend through CaringBridge.org. It is a free, web-based site where family members can inform friends about a patient’s status. I think it is such a useful tool for families to utilize while their loved one is sick. It is difficult to call friends and family to give updates at the end of the day, when all you really want to do is take a deep breath and close your eyes. But with CaringBridge, you can type in updates when it is convenient to you, and those following you will receive an email indicating the information has been updated.

CaringBridge is a non-profit organization that allows you to write updates about your loved one and explain the patient’s status. In addition, the site also allows users to keep an online journal, offer a guestbook where friends and family can check-in and leave comments, and even maintain a personal planner where friends can sign up to help you in your day-to-day tasks such as picking up a prescription, or taking your kids to sports practice.

The beauty of this is that you don’t have to deal with the questions that come at you from everywhere – you can direct everyone to your CaringBridge site for the answers. People can sign the guestbook and offer words of encouragement, prayers, pictures or just support. I have to tell you, I am constantly waiting for the next update on my friend. It is as informative as you want it to be.

I know that where I work a lot of families use this site. It allows people to update their loved ones at home and around them. Oftentimes, patients will go back and read the comments. It is a good way to keep a diary of how you are enduring your journey. I have spoken with people about this site, and they seem happy that they have utilized this program.

If you have a loved one who is battling mesothelioma, consider using CaringBridge as an option for keeping your friends and family updated on his or her progress. The site has privacy settings to allow you to manage who can see the information.

For more information see CaringBridge.org.

Also, if you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, feel free to contact us.

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