Mesothelioma Help Cancer News
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.”
Share on Facebook
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.
What is the Medical Innovation Bill and How Will it Help Mesothelioma Patients?
Last week we reported about Mavis Nye’s support of Lord Maurice Saatchi’s Medical Innovation Bill. Today, we go into detail about the bill and how it can benefit mesothelioma patients living in the UK.
February 24, Lord Maurice Saatchi of the House of Lords hosted a panel of experts in a live, Google Hangout session as he launched the public consultation period of the Medical Innovation Bill. The Secretary of State for Health, Jeremy Hunt, requested a public consultation period for the bill “that gets the views of patients on the right balance between innovation and safeguards. A consultation that hears from clinicians on the problems they face in innovating and how to overcome them.”
Secretary Hunt is an advocate of the bill, and has said publicly that he supports the Bill and that he will make it law if the public and medical professionals demand it.
Expert Insight
Secretary of State, Jeremy Hunt
“We must create a climate where clinical pioneers have the freedom to make breakthroughs in treatment.”
Share on Facebook
“The hangout was hugely successful,” Lord Saatchi’s spokesperson, Liz Scarff, wrote in an email to MesotheliomaHelp of the Feb. 24 launch event. “It enabled us to extend the launch beyond the walls of Parliament directly to the public.”
Hoping to build on the momentum of the launch event, Lord Saatchi and proponents of the bill are in the midst of a public outreach campaign encouraging the public, medical professionals and patients to comment on and support the bill.
“Secretary Hunt needs to understand that the Saatchi Bill is something that the public, patients and also clinicians want,” added Ms. Scarff. “To this end, we need as many people as possible to respond to the consultation.”
What Is the Saatchi Bill?
Lord Saatchi penned the bill, also known as the Saatchi Bill, after his wife of 27 years died from ovarian cancer in 2011. Lord Saatchi watched as her health declined and doctors followed “standard procedure” for her care. “The treatment was degrading, medieval and ineffective, and they knew it would lead to her death,” Lord Saatchi wrote in a guest article in the Telegraph.
Doctors in Great Britain primarily only offer treatments that have been approved for their patients’ particular condition and that are part of standard procedure. For mesothelioma survivors, such as Mavis Nye, who have been told there are no more treatment options, it means that there are no more treatments approved for mesothelioma. Potentially, though, there is another drug that is effective on another type of cancer or disease that could benefit her. However, doctors will not present another option for fear of a medical negligence lawsuit. So they either try the same things that were not effective in the first place, or they do nothing.
“The risk of doing nothing is not nothing. The risk of doing nothing is fatal – fatal every single time,” said Alex Smith, CEO of Harrison’s Fund, a nonprofit organization dedicated to fighting Duchenne Muscular Dystrophy of which his son suffers, who spoke during the February 24 launch of the need to pass the Saatchi Bill. “The time is now; we don’t have time to waste.”
Lord Saatchi hopes that by offering medical professionals protection from the law, if they follow the protocol of the new bill, doctors will have the confidence and drive to be innovative and try other treatments on their patients who are out of options.
Expert Insight
Lord Maurice Saatchi
“We need to say loudly and clearly we want to try new treatments for cancer where the old ones are known to lead only to death.”
Share on Facebook
“It [the Bill] will allow good doctors who have the best interests of their patients at heart to deviate away from standard procedures and innovate, safely and with the protection of the law – as long as what they plan to do follows a clear set of actions,” as explained on Tumblr.
“We need a better balance between defensive medicine and innovation,” said Lord Saatchi during the launch event. “This bill shifts the balance towards innovation.”
Benefit for Mesothelioma Patients
Many doctors have stepped up and offer their support of the bill. Dr. Robert Lefever, addiction specialist who blogs for the Daily Mail, is a supporter of the Saatchi Bill. In a recent blog, Lefever says, “The Medical Innovation Bill intends to make it easier to define what is sensible and permissible innovation and, by contrast, what is reckless experimentation.”
Under the new bill, patients can demand innovation by asking: “Have you tried everything?” “Are there any other potential treatments available that you can offer me that are not standard procedure?” This innovation, however, comes with the risk of the unknown. According to the Saatchi Bill experts, “this risk needs to be balanced against the risk of the known – a standard treatment that is unlikely to work.”
“For mesothelioma patients facing a difficult prognosis, and with no treatment options left, if you want you can ask your doctor to try something new – and you can assure your doctor that the Bill will support him or her in stepping outside standard procedures – as long as the doctor fulfills the procedures set down in the Bill,” said Lord Saatchi. “The Bill will then allow the doctor to try new treatments without the risk of being sued.”
The consultation event runs through April 25. Secretary Jeremy Hunt will support the legislation at the conclusion of the public consultation. Visit the “Take Action” section of the Saatchi Bill on Tumblr or the Medical Innovation Bill comment section via the Department of Health to show your support. Also, follow @SaatchiBill on Twitter or on Facebook for daily updates.
The good news for Mavis Nye who said, “I want the bill now,” is that the Bill will be enacted immediately at the conclusion of the consultation period, (assuming no new clauses are added as it passes through Parliament.)
“Currently, the Bill is enacted as soon as the Queen gives it Royal Assent,” according to Ms. Scarff. “We hope it will stay like that – there is no time to waste.”
Sources:
- Gov.UK
https://www.gov.uk/government/news/medical-innovation-doctors-and-patients-encouraged-to-give-views - Harrison’s Fund
- House of Lords Google Hangout
https://www.youtube.com/watch?v=9uxwl0e-DcU - Jeremy Hunt’s Written Ministerial Statement
- Lord Saatchi Bill: We must liberate doctors to innovate
http://www.telegraph.co.uk/news/health/saatchi-bill/10598161/Lord-Saatchi-Bill-We-must-liberate-doctors-to-innovate.html - The Saatchi Bill
http://saatchibill.tumblr.com/ - The Telegraph
http://www.telegraph.co.uk/news/health/saatchi-bill/10657747/Lord-Saatchi-launches-the-consultation-on-his-medical-innovation-bill-live.html - University of Leicester
http://www2.le.ac.uk/offices/press/press-releases/2014/february/leicester-expert-on-asbestos-related-cancer-to-speak-at-the-house-of-lords - Dr. Robert Lefever
http://saatchibill.tumblr.com/post/75679150130/fearful-doctors-in-a-war-against-inertia
Impact of Mesothelioma to a Daughter Who Lost a Father to the Disease
Mesothelioma…a difficult word. A lot of people aren’t sure how to say it, let alone know anything about it. I used to be one of those people. All I knew about mesothelioma came from those commercials promising legal help. I didn’t know it was cancer, I didn’t know there was no cure, and I didn’t know how it would change my life forever.
When I hear the word “mesothelioma” now, a range of emotions run through me – fear, pain, heartache. Everywhere I go, I’m afraid that there might be asbestos around. I feel pain every time I think of someone being diagnosed with mesothelioma or undergoing surgeries and treatments. My heart breaks knowing that this disease took my Dad from me and knowing that others have gone through this same devastation.
All these sincere emotions aside, perhaps the most painful thing for me is that, in many cases, the general public who are lucky enough not to be privy to the world of mesothelioma, don’t take it seriously. There have been many times since Dad’s diagnosis where I have overheard people saying that asbestos is a joke, that it won’t hurt you. I always make it a point to step in and politely and calmly explain that that is simply not true. It’s something that I take incredibly personal; I feel as though I have to defend my Dad and all those in the mesothelioma community.
It is so important that the general public be educated on the dangers of asbestos and mesothelioma. It is for everyone’s protection. Knowledge and caution will help, but knowing that asbestos is still legal in the United States truly angers me. Meso is a completely preventable disease that we all need to protect ourselves against.
If you have questions about mesothelioma, contact the Mesothelioma Applied Research Foundation to find out more. Help to spread the lifesaving information they have worked so hard to provide, and continue to “Believe in a cure!”
Free Mesothelioma Patient & Treatment Guide
We’d like to offer you our in-depth guide, “A Patient’s Guide to Mesothelioma,” absolutely free of charge.
It contains a wealth of information and resources to help you better understand the condition, choose (and afford) appropriate treatment, and exercise your legal right to compensation.
Download Now