Month: March 2014
Family, Friends, Coworkers Come Out to Celebrate and Support Mesothelioma Patient
After seeing what Dad went through in the hospital after his surgery, the mental and physical stress he has been under, and not being able to work, I decided to plan a benefit for him. Throughout the summer I gathered items for baskets through many of the local companies in my parent’s hometown and items from places down at the shore. I contacted good family friends of ours, Lex, Patty, Jessie and Carrie Wilkinson, who just opened a sports bar very close to my parent’s house named Dub’s on 5th. I also contacted Sal Ritz, a high school friend of my parents who has his own band, and plays locally at many different events. They were all on board and wanted to help in anyway they could.
August 14 was the day I had planned. I did not go into much detail with my parents about what this night would be like – I just told them that I wanted to do this for them and to just show up. I wanted this to be an evening of happiness, and to enjoy being around friends that my parents haven’t seen in years. The main reason for this benefit was to get family, friends and neighbors, new and old, all together. A lot of our family and my parent’s friends were either unaware that Dad was sick or they did not know how his treatments were going.
After all the preparing, the day finally arrived. A few close friends of mine came to my parent’s house with me to finalize the baskets and get everything in order. I arrived at Dub’s on 5th with my brothers and a few friends to set up. The Wilkinsons helped me get situated and were very warm and welcoming to me, as always. To my surprise a few of my dad’s old coworkers and friends were there already. Dad’s old coworker introduced himself and told me how he remembered me as a little girl running around. That just shows how long it’s been since Dad has seen some of his friends, and they had no idea what my dad was going through.
People started pouring into Dubs and buying tickets for the baskets and the 50/50. Within an hour the place was packed with so many familiar faces. Even all my friends from Philadelphia and some of their families made the two-hour drive to be there. Sal Ritz started playing while everyone was ordering dinner and drinks as well as enjoying each other’s company.
My parents finally arrived and walked into Dubs. When they saw the people in the room they froze and their mouths dropped. They had no clue what to expect, and they were blown away by the turn out. There were people there that they haven’t seen in 20 years that came to show their support to my parents. The smiles on Mom’s and Dad’s faces were priceless. After all the stress they have been under in the months prior, it was so good to see them smiling, having conversation, and enjoying company of everyone there. My dad is a man of few words at times, but he was so touched by the amount of people that were there for him. He stood up with Sal Ritz and thanked everyone for coming and I remember him saying, “This night shows me how much support I really have and I couldn’t be more thankful for that.”
Dad was able to stay until after the announcements of the prizes; although he said that he wanted to go before them because he was getting tired. He was happy to see who some of the prizes went to: Box seats to a Phillies game went to two of his best friends growing up, an autographed Flyers photograph to a new friend, a fruit basket to an old neighbor from when he was growing up, and many more.
This night helped raise awareness for mesothelioma and also raised money to help fund the travel expenses to and from Philadelphia for Dad’s treatments and toward some medical bills. But most importantly, it showed my parents the support that they have. So many people were offering to help in anyway that is needed.
This is the positive support any family dealing with cancer needs. When you are going through tough times, just the gathering and closeness of family and friends can lift you up. I can definitely say that this night lifted my family’s spirits and showed us the huge support that we really have.
Gratitude for Mesothelioma Specialists on National Doctor’s Day
March 30 marks National Doctor’s Day in the United States. The goal of the day is to celebrate and recognize the physicians who so valiantly serve Americans with mesothelioma, and to thank them for their contributions. From my point of view, this is a beautiful way to acknowledge the medical community and show them our sincere gratitude for all that they do.
Many doctors spend countless hours working – putting their own interests aside for the good of their patients. Whether they are in the office having clinical visits, doing research, speaking at an event, or completing continuing education, they are constantly striving to be better for us.
We here in the U.S. are so lucky to have world class doctors at our fingertips. My family has become well acquainted with some of them over the past two-and-a-half years and we do recognize that we are blessed by them. From Dad’s primary care physician in southwestern Pennsylvania to the mesothelioma specialists in New York City, each one has been a beautiful example of what a doctor should be.
We have been treated wonderfully by these individuals throughout this entire journey. Dad was treated as a person, not a number. Every question was answered with the utmost respect… even when I asked some obvious ones that made my husband laugh and shake his head. These physicians truly advocated for Dad and for our family. They did their best to understand our nerves and apprehensions. They shared in our joys and in our sorrows.
I have been lucky enough to see the human side of medicine through these amazing men and women, and I thank them for their tireless work and dedication from the bottom of my heart. Reach out to your friends and colleagues in the physician community and let them know that you appreciate them. Their life-saving work should not go unnoticed.
Know more about Mesothelioma and how you can deal with it.
The Man Behind the Mesothelioma Warrior: Ray Nye Discusses Caring for His Wife
Patients diagnosed with mesothelioma face a long, demanding battle involving countless doctors’ appointments, extensive tests, surgeries, and chemotherapy treatments – and sometimes that is just the beginning since there are even legal matters such as estate planning. Managing the illness and all the appointments, on top of taking care of day-to-day living needs, takes the help of a dedicated caregiver.
Although most people picture mothers, wives and daughters as being caregivers, husbands and sons are now almost as likely to be a primary caregiver as their female counterparts.
Caregivers provide nearly constant care for mesothelioma patients as they endure often debilitating treatments. Caregiver duties can include grocery shopping, housekeeping, transportation, meal preparation, management of insurance forms, medical forms and prescriptions, and general care for the patient, as well as emotional support. For many caregivers, this is all done while trying to care for other family members.
Mavis Nye, of Seasalter, England who has been fighting mesothelioma for nearly five years, knows all too well how critical a caregiver is for her care and recovery. Her husband of 53 years, Ray, has been by her side throughout her battle, ensuring that she is cared for and that she doesn’t have to worry about anything other than her recovery.
When asked what day-to-day duties he does for Mavis, Ray said in an email to MesotheliomaHelp that his “list” varies according to how she feels. Although he always ferries her to and from hospitals, treatments and doctors’ appointments, when she is down — which usually happens for a few days during her chemotherapy treatments — Ray does nearly everything around the house. He takes over the feeding and walking of their dog, Louis, helps Mavis get dressed, and although not his strong suit, Ray even took up cooking whatever Mavis requests. But, in reality, Ray said, he does not really follow a list.
“I make it my business to do whatever Mavis asks for, whatever she needs, and if possible before she asks or even knows she wants it,” said Ray.
The Reality of Caregiving
According to the Caregiver Action Network (CAN), more than 90 million family caregivers, or two out of every five adults, in the U.S. fulfill a vital role on the care team. A 2012 article in The Independent, a British newspaper, reports that in England there were 6 million caregivers in 2012, and that number is expected to grow to over 9 million by 2037. About 42% of those caregivers are men, and one in five of full-time caregivers are forced to give up work and support a family member full-time.
Twenty hours per week is the average number of hours family caregivers spend caring for their loved ones, while 13% of family caregivers are providing 40 hours of care a week or more, according to the article “Caregiving in the United States” by the National Alliance for Caregiving, in collaboration with AARP. However, most caregivers do not keep track of the time involved, and whether it is a caregiving duty or simply part of a daily routine is not important to them.
Expert Insight
Ray Nye
“I have come to terms that it’s my place to do any extra work involved in caring. I don’t think about it anymore, it is just natural.”
A New Role for Older Men
For older men who have been in the traditional role as provider, taking on caregiving can be challenging. Not only do they struggle with giving up their jobs, or cutting down the number of hours they work, but they must quickly shift from being doted on to taking an active role in keeping the household running. For some, that can require picking up basic cooking skills or uncovering where the cleaning supplies are stored.
In Ray’s case, Mavis tried to make the transition for him as easy as possible. As soon as she was diagnosed with mesothelioma, Mavis went into “overdrive,” said Ray. She bought a new gas stove, because she thought their electric one was too complicated. She replaced their aging microwave with a new one so they did not have to worry about it breaking down. In addition, Ray said, “Mavis replaced saucepans, sorted all her old wardrobe and disposed of it, replaced bedding, and she even planned her own funeral.”
Handing off all the work to Ray is not easy for Mavis. “I still have to fight Mavis to do jobs because she is still so independent, and feels the need to keep going. So I take note and I move in when I see I am needed.”
Ray has an added role of supporting Mavis as she advocates for mesothelioma victims across the UK. With that comes a lot of appearances and appointments for Mavis, as well as requests from reporters. Ray plans out the travel plans, gets Mavis to her destination on time, makes sure she gets back home safely, and he is also her biggest fan.
“He never moans about the long days during my appearances, and he is behind me all the time as I raise awareness,” said Mavis. “I can’t thank Ray enough for always being there for me.”
Expert Insight
Elinor Ginzler, AARP
“Caregiving men, although fewer in number, are just as dedicated, diligent and determined to help their loved one live the best life that he or she can.”
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Caregiving and Associated Costs
Caregiving can require serious medical care as well. According to CAN, almost half of the caregivers must perform “complex medical/nursing tasks for their loved ones – such as managing multiple medications, providing wound care, and operating specialized medical equipment.”
For patients without caregivers, these tasks are typically handled by a medical professional, adding to the cost of the patient’s medical care. The U.S. and British governments acknowledge that caregivers are now crucial to providing care to patients. According to recent studies, U.S. caregivers provide nearly $450 billion worth of unpaid care each year. In England, Britain’s caregivers provide an estimated £119 billion ($197 billion U.S.) of care every year.
However, caring for a loved one suffering from mesothelioma can also come with an emotional cost. For many caregivers, the inability to save their loved one from mesothelioma often turns to guilt, anger and despair. Some even ask, “Why isn’t it me that is sick?”
For male mesothelioma caregivers, who were sometimes the source of the secondhand exposure of asbestos that led to their spouse’s cancer, that question is difficult to shake. Ray is no exception – he has that question in the back of his mind on many days. He and Mavis believe her source of mesothelioma is from washing Ray’s clothes that were covered with fine asbestos dust from work at a dockyard.
“I do often wish that it was me with mesothelioma rather than Mavis — she didn’t ask or deserve it,” said Ray. “It should be me with it. But we can’t change it.”
Honoring Caregivers
Jan Egerton, who lost her over 10-year battle to mesothelioma in January, relied on her husband for many years for support and care. In a blog entry in December, Jan wrote, “To the people who love us and care for us, it is hard, it is emotional and it is wearing you out. Having to care for yourself and someone you love is a task that people don’t understand unless they are doing it themselves. From the bottom of my heart I thank you for caring.”
Each year in the U.S., November is set aside as National Family Caregivers Month as a time to honor and thank all the caregivers. In 2013, President Obama declared in the presidential proclamation: “During National Family Caregivers Month, we thank these tireless heroes for the long, challenging work they perform behind closed doors and without fanfare every day.”
Like Ray, the men who step in to care for their wives do not even hesitate to do anything their loved one needs. For him, it is an honor and a privilege to care for someone who has always been there for him.
“Mavis has always been there for me in our relationship. There is no you or me, only us, and we help each other. I love her.”
Beginning with Mavis’ illness, Mavis and Ray have documented their journey with mesothelioma. Ray writes as a caregiver, whereas Mavis talks about the illness, treatments and her efforts to raise awareness of the dangers of asbestos. Below are the couples’ websites where you can follow them and learn how they manage their life with mesothelioma.
- OneStop Mesothelioma – Contains information and resources about mesothelioma and asbestos
http://onestopmesothelioma.co.uk/index.html - Living with Mesothelioma – Mavis’s Diary
- Ray’s Blog
- Meso Warrior – Mavis’s book available on Amazon.com
https://www.amazon.com/Meso-Warrior-Mavis-Nye-ebook/dp/B004EHZXL6
Sources:
- AARP – Caregiving: It’s Different for Men
http://www.aarp.org/relationships/caregiving/info-07-2010/ginzler-male-caregivers.html - Britain’s Army of Unpaid Carers
- The Independent
http://www.independent.co.uk/news/uk/home-news/britains-army-of-unpaid-carers-being-pushed-to-breaking-point-7720677.html
Study Shows 427,000 Years of Life Lost To Mesothelioma over Past Decade
Asbestos exposure over the past 50 plus years has caused many innocent people to suffer, and die, from lung cancer. A recent study shows that over 427,000 years of life were lost from just 1999 to 2010 due to early deaths related to these diseases.
Mesothelioma & Asbestosis Continue To Be Threats
Even though asbestos is no longer widely used in the U.S., mesothelioma and asbestosis continue to pose threats to Navy veterans and those who shared homes with them. Asbestos was commonly used in industrial settings such as shipbuilding and construction.
According to research conducted by the National Institute for Occupational Safety and Health (NIOSH) and published in the American Journal of Industrial Medicine (AJIM), more than 427,000 years were lost from 1999 to 2010 due to early deaths from mesothelioma and asbestosis – the two most deadly diseases caused by asbestos exposure:
- Mesothelioma. Mesothelioma is a form of cancer that develops from the cells of the mesothelium, the protective lining that covers many of the internal organs of the body. While most commonly seen in the pleura (the outer lining of the lungs and internal chest wall), it can also arise in the peritoneum (the lining of the abdominal cavity), and the pericardium (the sac that surrounds the heart). It is an aggressive cancer that can spread across internal body membranes and is very difficult to treat.
- Asbestosis. Asbestosis is a chronic inflammatory and fibrotic medical condition affecting the parenchymal (functional) tissue of the lungs that results in lung scarring and is generally caused by the inhalation and retention of asbestos fibers.
Despite government guidelines for using and handling asbestos over the past 20 years, NIOSH researchers found that the overall number of life years lost to mesothelioma and asbestosis has changed little between 1999 and 2010. In fact, each year, approximately 3,000 people, many of whom are Navy veterans, are diagnosed with mesothelioma.
Navy Veterans & Civilians Who Worked With Them Are At Higher Risks
Navy veterans and the civilians who worked with them in shipyards (commonly referred to as yardbirds), are at higher risk of developing mesothelioma and asbestosis from exposure to asbestos – which was commonly used inside U.S. Navy ships and throughout the yards where ships were built, repaired and maintained.
The following occupations are some of the trades that navy veterans and civilians may be at a greater risk of contracting mesothelioma and asbestosis:
- Boilermakers
- Mechanics
- Crane operators
- Electricians
- Engineers
- Laborers
- Machinist/Mates
- Merchant Marine Seamen
- Painters
- Pipe coverers
- Pipefitters
- Plumbers
- Welders
Asbestos-related diseases and symptoms don’t often appear until decades later. Many Navy veterans exposed years ago may have only recently been diagnosed with mesothelioma, asbestosis or other asbestos-related diseases.
The bottom line is that losing 427,000 years of life due to a dangerous product is simply unacceptable. Manufacturers of asbestos products used on Navy ships knew or should have known of the dangers of asbestos before it was used on ships – and should have warned others of the increased risks of developing serious illnesses that frequently lead to early death.
If you have been diagnosed with mesothelioma or lung cancer from asbestos exposure, contact an experienced mesothelioma injury attorney who can analyze your situation and determine your legal options so that you can make an informed decision about what’s in your best interests.
Merchant Mariners at Risk of Mesothelioma – Even 50 Years after Asbestos Exposure
Merchant Mariners around the world have a lifetime risk of developing mesothelioma as a result of service on ships. Merchant mariners and Navy veterans exposed to asbestos 20, 30, 40 and even 50 years ago or more can be diagnosed with malignant mesothelioma – a fatal cancer that is caused by asbestos exposure which causes cell damage. Merchant mariners in the U.S. and Europe were heavily exposed to asbestos on merchant ships. A former UK merchant marine and asbestos handler is proof that symptoms can take many decades to appear. The mariner was diagnosed with mesothelioma 50 years after being exposed to asbestos.
Working in Clouds of White Asbestos Dust Meant Nothing at the Time
According to the Stroud News & Journal, Gordon Bennett served in the Merchant Navy for four years after leaving school in 1950 and did two years’ National Service in the Army. He then worked as a laborer at a company called Fibrecrete in Chalford Hill from 1958 to 1962. The company produced asbestos gutters, drainpipes, sheeting and other products. The combined exposures as a merchant mariner and laborer caused his mesothelioma.
Although Bennett had not been exposed to asbestos since 1962, he began having difficulty breathing and saw a doctor in April of 2013. He was diagnosed with malignant mesothelioma and passed away in October of the same year. A coroner determined that he died from the cancer as a result of asbestos exposure.
Merchant Marine Seamen Have Increased Risk of Cancer
Merchant marine seamen in the United States and around the world have an increased risk of developing mesothelioma because asbestos was widely used in the equipment of maritime and naval ships, cargo ships, tankers and freighters. It was used as insulation on boilers, equipment, and in gaskets and packings used in pump valves and machinery.
As in Bennett’s case, the onset of mesothelioma takes decades. Many Navy veterans and merchant seamen may not notice symptoms of asbestos-related disease until 20 years or longer after duty on a ship.
A study published in the Journal of Industrial Medicine by researchers at Mount Sinai School of Medicine in New York analyzed 3,300 chest x-rays of U.S. merchant marine seamen. The researchers found that a third of them showed abnormalities in the lining of the lung – where mesothelioma typically develops from asbestos exposure.
If you served as a merchant marine seaman and have recently been diagnosed with mesothelioma, you have a legal right to seek compensation from the asbestos manufacturers that caused your disease in the form of medical expenses, lost income, rehabilitation, pain and suffering or loss of consortium.
It is widely recognized that manufacturers knew about the dangers of asbestos, but failed to warn workers of its danger. As a merchant mariner, you also have the special right to seek compensation from the owners of the ship on which you served. That right is based on a special maritime law called the Jones Act. It gives merchant mariners the right to sue ship owners and imposes strict duties on ship owners.
Contact an experienced mesothelioma lawyer today to discuss your legal options. You may be entitled to compensation for your injuries.
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