Resilience Can Help Patients and Families Come Back Stronger

Resilience Can Help Patients & Families Come Back Stronger

In life, things can happen that shake us up and change the way we look at the world. Trauma, accidents, crimes against us or an unexpected diagnosis of mesothelioma for you or a family member, for example, can change your world in minutes. It is said that how we respond to these events is what makes us stronger. Through these events we often hear the word resilience talked about. What exactly does that mean?

According to Psychology Today, resilience “is that ineffable quality that allows some people to be knocked down by life and come back stronger than ever. Rather than letting failure overcome them and drain their resolve, they find a way to rise from the ashes.”

In the book, “Option B Facing Adversity, Building Resilience, and Finding Joy,” by Sheryl Sandberg and Adam Grant, resilience, grief, and moving forward, are explored. Ms. Sandberg’s sudden loss of her husband and her coping with her young children’s grief, as well as her own, is documented. In collaboration with Adam Grant, a psychologist and professor at Wharton, who has studied how people find motivation and meaning, Sheryl tells her story. Adam fills in the research on dealing with these issues.

This is an excellent book, easy to read, and is bound to help you at some point in your life. One of the interesting takeaways from the book is that, “more than half of the people who experience a traumatic event report at least one positive change, compared to less than 15% who develop PTSD.” The authors say, “If you don’t see if growth is possible, you’re not going to find it.”

With malignant mesothelioma, unfortunately, loss happens. Everyone’s life and circumstances are different, “Option B” is just one person’s story. We all have our own stories, but it is reassuring to know that others who have endured loss are eventually able to experience joy again. We are not alone as we journey through our lives adventures and challenges.

Memorial Day to Remember US Veterans

Today, in the U.S. we celebrate Memorial Day. Memorial Day is a holiday that was first observed in 1868, to mark the sacrifices of the Civil War, when participants decorated the graves of more than 20,000 Union and Confederate soldiers. General John A. Logan is credited with issuing the proclamation.

In the Civil War, 620,000 soldiers were killed. For many years, what is now Memorial Day was known as “Decoration Day.” It was used to commemorate those killed in the Civil War and was observed on May 30. After World War I, however, the tradition was expanded to honor those killed in all wars.

In 1971, the last Monday in May was declared to be Memorial Day and a national holiday. For many years, led by the late Senator Daniel Inouye, of Hawaii, who was a decorated World War II veteran, legislation was reintroduced to change it back to May 30, to reemphasize that the meaning of the holiday is to honor the nation’s war dead, not the first long weekend of the summer.

Approximately thirty percent of all U.S. mesothelioma victims are military veterans. For many, their exposure can be traced back to asbestos exposure from service to our country decades earlier. On Memorial Day, we honor their sacrifice. Not all soldiers are killed on the battlefield, or in combat – some suffer their fate decades later in the form of a rare, fatal cancer.

When you Google Memorial Day, some of the first items to come up in the results include the best Memorial Day sales of 2017 on refrigerators and washers, and the 10 most popular Memorial Day travel destinations for 2017. In order for all of us to enjoy these luxuries, recognize that those before us sacrificed to make it possible.

On this Memorial Day, remember it is a holiday to reflect on those who have made the ultimate sacrifice for the greater good. Remember and honor and find time to ensure that the true meaning of Memorial Day is acknowledged.

Mesothelioma Information in Proper Context

When patients and families are diagnosed with mesothelioma it introduces them to a whole new world with a different language, different people in different roles, and sometimes this all plays out in a different city, away from home. Basically, the mesothelioma patient‘s world is turned upside down. It can feel like you have lost control of your life in a foreign land.

Over the years I have taken care of mesothelioma patients in many different places, during diagnosis, in the hospital, out of the hospital, follow up after treatment, and there are quite a few observations that I have made. Information transfer and assumptions often happen when what is said is taken out of context. This can easily happen because this is a stressful time, and the information is complex.

Mesothelioma information can be confusing. Whether you are listening to your medical team explaining procedures, or you are trying to understand what you have read about the disease, it is vital that you weigh the information in the context that it was presented.

The other important fact to consider is that everyone’s mesothelioma is different. Support of other mesothelioma patients and families is important, but remember everyone is on their own unique journey with this disease. What they say or do may not be something you will need to do.

Recently, when talking with a family member of a mesothelioma patient she repeated what she had read about survival statistics for her loved one’s mesothelioma. She had the number in her head and was focused on it. Not only was the statistic taken out of context, but it was referring to a different cell type of mesothelioma. I was able to clarify the information and explain how this information was not pertinent to the patient. Reassured that it was not accurate in her loved one’s case, they were relieved and could now turn their focus away from a number and to making the most of every day.

Information is complex in a rare cancer. Take it in context, and reach out if you need clarification.

If you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, please email me at [email protected].

ADAO Releases PSA to Draw Attention to the Sad Truth of Asbestos Exposure

With a mission to educate Americans, and the world, about the dangers of asbestos, the Asbestos Disease Awareness Organization often has to present the cold, hard facts of the dangers of asbestos. In a public service announcement released last week, the ADAO does just that by depicting the story of a young girl whose father died from the toxic mineral.

In partnership with Chocolate Moose Media, ADAO developed a 30-second video, “Asbestos: The Killer You Can’t See,” with a goal to spread asbestos awareness to youth, families, and workers around the globe, according to a May 16 press release from the ADAO. The video, that uses hand-drawn animation, depicts a young girl who loses her father to an asbestos-related disease.

http://www.asbestosdiseaseawareness.org/archives/43675

“Our goal was to make an emotional connection to the danger of asbestos rather than overwhelm viewers with statistics,” says Linda Reinstein, mesothelioma widow and President/CEO and co-founder of ADAO. “The simple truth is asbestos kills and prevention remains the only cure.”

Exposure to asbestos is the direct cause of multiple diseases including mesothelioma, asbestos is and lung cancer. Exposure tends to occur among workers in the construction, electrical, plumbing, boiler, auto and maritime industries, particularly during the removal of asbestos materials due to renovation, repairs, or demolition, according to the U.S. Occupational Safety and Health Administration.

When asbestos fibers become airborne they can easily be inhaled or ingested by workers or others nearby. The human body does not have the ability to break down these fibers, and the fibers can become lodged in the lining of the chest or abdomen, where, over the years, they begin to irritate the tissue, leading to mesothelioma.

The World Health Organization estimates that asbestos causes approximately half of all deaths from occupational cancer. In addition, 125 million people worldwide are exposed to asbestos in the workplace and nearly 107,000 die annually from asbestos exposure.

For this reason, the ADAO is reaching out across the globe and is offering the PSA in English and five other languages— Russian, Hindi, Portuguese, French, and Spanish. According to the press release, it is important to reach people in nations that continue to mine, use, and export asbestos.

Approximately 3,000 Americans die from mesothelioma each year. There is no cure for the cancer, and the only way to prevent it is to avoid exposure to asbestos.

“People are often unaware of the dangers posed by certain substances,” says Firdaus Kharas, founder of Chocolate Moose Media. “The lack of information can lead to deadly consequences. In this compelling hand-drawn video we warn about asbestos.”

Do your part to help ADAO get the word out about the dangers of asbestos. Share the video through your social media accounts.

Watch the PSA Video Here

About the ADAO

The Asbestos Disease Awareness Organization (ADAO) was founded by Linda Reinstein and Doug Larkin in 2004 and headquartered in Redondo Beach, California. ADAO is the largest independent 501(c)(3) nonprofit in the U.S. dedicated to preventing asbestos exposure, eliminating asbestos-related diseases, and protecting asbestos victims’ civil rights through education, advocacy, and community initiatives.

To find out more about ADAO visit its website at http://www.asbestosdiseaseawareness.org.

Mavis Nye Foundation - Fund Research for Mesothelioma

Mavis Nye Takes Patient Empowerment to a New Level, Starts Foundation to Fund Mesothelioma Research

It has been nearly one year since Mavis Nye completed a life-saving clinical trial at the Royal Marsden in England. The 75-year-old British woman who has battled mesothelioma for the last eight years went from a frightened, sick patient lost in a medical maze, to the first UK patient to claim remission from the cancer.

Mavis fought nearly every step of the way to ensure that she got the right care at the right time that would help keep the cancer at bay and keep her alive. She has proven that a mesothelioma patient can regain her health and her life by taking control of her own care, and she showed that an empowered patient has the best chance at survival.

Throughout her fight, though, Mavis never gave up on her fellow mesothelioma warriors as she battled for care for them as well. She plans on continuing that fight for others as she takes the helm at the Mavis Nye Foundation (MNF).

“I will be leaving a wonderful legacy that was always a dream of mine to raise money for research so that I pay back for such wonderful treatment that has kept me alive!” Mavis told Mesothelioma Help.

Mavis worked with a variety of people, including Trevor Sterling, Partner for Medical Relations at Moore Blatch Solicitors of London, and one of the UK’s leading major trauma lawyers, to get the foundation off the ground.

On April 27, Sterling made the following announcement on Facebook:

“A couple of years ago I read about a wonderful lady who had miraculously won her fight against Mesothelioma (an aggressive terminal cancer). She was given 3 months to live yet 8 years on she has become the most prolific asbestos campaigner. So inspired I went to meet her at the Marsden – she and her husband Ray are the most incredible people. They deserve a legacy so I am so thrilled that we have this week established the Mavis Nye Foundation.”

The MNF gives Mavis a forum to continue all of the advocacy and education work she has been doing since diagnosed with pleural mesothelioma in 2009. Mavis, who received the prestigious British Citizen Award in the category of “Service to Healthcare” in January 2016, can now give back to the community that has cheered her on throughout her highs and lows.

“Mavis has turned her battle with mesothelioma into something positive, and is making her voice heard to educate people about this illness,” said Angela Caulfield in her nomination of Mavis to the British Citizen Award.

Mavis Nye, BCAh, now proudly adds President, Mavis Nye Foundation to her signature block. Ray Nye, Mavis’s husband who has been by her side for 57 years and has been her rock during her battle with mesothelioma, will take a place on the MNF as Vice Chairman and Trustee.

“I want people to see that you can live with a terminal illness and fight, but at the same time educate people about asbestos and the disease it causes,” said Mavis.

The Mavis Nye Foundation Supports Patients, Research and the Medical Community

Mavis has always been thankful for the medical care she received, and she credits every one of the medical team members she encountered for keeping her alive far beyond her expectations. But, she also realizes that not all patients have access to such good care.

In June 2016, Mavis completed the MK3475-28 two-year clinical trial at the Royal Marsden Hospital in London where she received the immunotherapy drug pembrolizumab, known as Keytruda in the U.S. For Mavis, the results gave her a new life, and, according to a March 10, 2017 article in The Lancet, the drug is a suitable treatment option for patients with malignant pleural mesothelioma offering a “substantial duration of response.”

“All I can say is that at The Marsden, and Dean Fennel [visiting Senior Lecturer in medical oncology at Bart’s and Cancer Research UK Clinician], they all call me the star of the immunotherapy. Jeremy Steel [Co-Director of Bart’s Mesothelioma Research] in a speech recently said that they look at my case to prove that immunotherapy can work,” said Mavis.

It is this kind of response that has Mavis enthused about “funding more trials,” championing research and encouraging young college students to take on a career in the medical profession with an eye towards caring for mesothelioma patients.

As president and founder of the foundation, Mavis will guide the organization to focus on three critical areas of mesothelioma: the patient, research, and the medical staff.

The MNF will offer the following support:

Financial support to UK patients diagnosed with mesothelioma or other asbestos-related diseases requiring assistance to access medical treatment, in particular, experimental medical treatment.
Grants for the advancement of laboratory and clinical research in the UK for the treatment of mesothelioma and other asbestos-related diseases.
Assist in the treatment and care of persons suffering from mesothelioma by awarding scholarships or grants for attendance at British higher education institutions for health professionals in financial need who will focus on mesothelioma nursing in the UK.

“I have so many people contacting me about the Mavis Nye Foundation it’s just amazing how it has been accepted by others,” said Mavis. “Charities, support groups, and everyone is congratulating me.”

Many factors can influence a patient’s survival, but being empowered to find the right medical care and to proactively manage the mesothelioma is the strongest weapon in fighting the disease and improving the patient’s outcome. Mavis is living proof of that, and she is not planning on giving up on herself, or others, anytime soon.

“I’m 75 now and proud to have lived this long and I never thought 8 years ago I would,” said Mavis. “My next target is our 60th wedding anniversary in 3 years time –I want to make that.”

Work is ongoing to get the MNF website established and ready to accept donations. If you would like to make a donation to the Mavis Nye Foundation now, contact Mavis at [email protected].

Read more about Mavis and Ray’s Journey on MesotheliomaHelp:

Follow Mavis and Ray through the following links:

A Diary Of A Mesowarrior Living With Mesothelioma
https://rayandmave.wordpress.com/2015/11/17/a-diary-of-a-mesowarrior-living-with-mesothelioma-scan-results-have-really-shocked/
Onestop Mesothelioma
http://onestopmesothelioma.co.uk/index.html

Mavis donates all proceeds of her books to Mesothelioma UK to help raise funds for mesothelioma research. Order her books at Mavis and Ray’s Bookstore.

Sources :

Mesothelioma UK
http://www.mesothelioma.uk.com/
Mavis and Ray’s Bookstore
http://www.lulu.com/spotlight/nyeray7070
British Citizen Award
http://britishcitizenawards.co.uk/mavis-nye/

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