Month: March 2015
Help Ease the Pressure On Mesothelioma Caregivers
Being a caregiver for a mesothelioma patient is a challenging, yet rewarding, experience. When you are helping out a loved one facing mesothelioma, remember to care for the caregiver as well.
Living three hours away from my parents, I was a part-time caregiver for my father. Helping him accomplish tasks that he used to do without hesitation was challenging, but mostly on an emotional level. Having family members and friends to talk to helped me tremendously. It was tough to see such a strong, active person as Dad having to ask others for help cutting the grass, cutting down a tree, moving something heavy. Being able to voice my concerns and share my feelings was (and still is) invaluable to me.
You might wonder what you can do for the caregivers, family members, and friends. As I said, for me, a listening ear made all the difference. You might offer to prepare a meal for them or to give them a night off and take over their duties for the evening. Sometimes, it’s tough to get out to run errands; pick up some groceries for them!
I know that for my Dad, it was hard to be stuck in the house in the cold weather. He loved being out in the snow, but with the meso and its effects, it made it difficult for him. In cases like this, go visit them. Take over a movie or a board game; make it a fun night in for everyone. This could also allow the caregiver some light-hearted time. They appreciate the gestures and company just as much as the patient does.
Above all, remember that just because someone has mesothelioma and their family and loved ones are caring for them, they are the same person as before their diagnosis. They need prayers, love, and support. Your friendship and concern can provide respite and peace to them when they need it the most.
Know more about Mesothelioma and how you can deal with it.
Meet Miss March (and May) of the Mesothelioma Warriors Calendar
In December, we brought you information about the group of UK women who created the Mesowarriors calendar to raise money for the June Hancock Mesothelioma Research Fund. This month we highlight the March mesothelioma advocate: Angela Caulfield of Cumbria, England.
Why did you do this calendar?
My wonderful, beautiful daddy fell asleep in 9th May 2011, 4 1/2 years after diagnosis of mesothelioma. My dad was a true family gentlemen, he worked hard all his life to give my mum and my siblings the best upbringing any child could ever want. My dad has always been my rock, no matter how, he was always there, he loved all his grandchildren and mesothelioma stole the earth’s most genuine, most funny, most caring and most loving dad any child could ever be blessed to have. My dad never smoked, he wasn’t a big drinker, he went to the gym, he always ate healthy, well unless he got caught – lol. The rollercoaster of emotions everyone goes through is horrible.
Was there a point where you wanted to back out from doing the calendar for fear or nervousness?
Ha! No, I didn’t want to back out for one minute! I enjoyed every single second of sharing and doing this, with some meso warriors I haven’t even met. It was quite stressful at one point, but the laughs we had and the wait of people uploading their photos was so funny. I loved every minute of it!
What does the June Hancock Mesothelioma Research Fund mean to you?
I had heard of the June Hancock charity, but have not used their services. But I believe it has helped so many meso sufferers. There has to be more successful research to find a cure for mesothelioma, more awareness to stop people contracting mesothelioma and also removal of all asbestos from schools/buildings etc should be made compulsory.
What message would you give to patients and families who are battling mesothelioma?
Reach out. If it wasn’t for the impact of the mesothelioma warriors, many of us have walked alongside each other for years, through good and bad, without this bond, without each other, I don’t personally think anyone who is associated with warriors would have gotten, or could still get through the journey with mesothelioma, as we have. We lean on each other for support, we have each other for laughs, this group can never be replaced, never be bought and can’t just be joined, it’s a group of unity and thank God we have all got each other.
About The June Hancock Mesothelioma Research Fund
The June Hancock Mesothelioma Research Fund of Sheffield, England, was established in 1997 for June Hancock and her mother who lost their lives to mesothelioma. The funds raised by the June Hancock Mesothelioma Research Fund go toward sponsoring vital epidemiological research into the causes of mesothelioma, raising awareness of the disease amongst healthcare professionals and the public at large, and to provide good quality up to date information and advice for mesothelioma sufferers and their carers, according to the organization’s website.
Know more about Mesothelioma and how you can deal with it.
Father to Amanda Stetler, Faces of Mesothelioma Writer, Loses Battle with Mesothelioma
Amanda allowed us inside her family’s life, through her blog posts on “Faces of Mesothelioma,” while her father David fought pleural mesothelioma. Sadly, he passed away this week after more than two years of dealing with the cancer.
David was diagnosed with pleural mesothelioma in January 2013. He traveled to Philadelphia where he received care at the University of Pennsylvania Perelman Center. He underwent extrapleural pneumonectomy surgery and weeks of rehabilitation before he found himself itching to get back to work and on with his life.
Trying to put the cancer behind him, David proudly celebrated his 60th birthday in July, 2013 with his family and close friends. The sand and sun of the Jersey shore afforded the family a nice break before David returned to UPenn for chemotherapy and radiation therapy.
In addition, David went on to participate in an immunotherapy clinical trial and underwent more rounds of chemotherapy and radiation while trying to keep his mesothelioma at bay.
“Dad continues to amaze me with his will to fight against this nasty cancer,” said Amanda after her father’s last hospitalization as he recovered from dehydration.
Throughout his treatments, David tried hard to maintain normalcy and be “his hard-working self,” as Amanda said. Whenever he was able, David was out in the yard cutting the grass, repairing things around the house, working on his vehicles, or even stacking wood.
Amanda and her father had the chance to enjoy some time alone just several months ago at their favorite vacation spot—the Jersey shore. “We will both cherish this father/daughter vacation week forever,” Amanda wrote about their time together.
Amanda and her family had planned a spaghetti dinner on March 21 in support of David. The event will still be held beginning at 4:00pm at the Williams Township Fire Co #1.
“The dinner will still go on despite the heartbreaking news of my father losing his battle to Meso this past Monday,” said Amanda. “It is now a celebration of his life.”
David leaves behind his wife Annie, his daughter, Amanda, and two sons, Andrew and Adam.
The Mesothelioma Help community sends our condolences to the Stetler family and wishes them much strength during this very difficult time.
Please take the time to read about Amanda and her father’s journey with mesothelioma through Faces of Mesothelioma.
Nurse Suggests Ways Mesothelioma Patients Can Manage Insomnia
Before starting chemotherapy for cancer patients, nurses take the time to explain all the possible side effects to the patients. However, what the patients hear and their own expectations of how they are going to handle the treatments, are sometimes at odds. Chemotherapy for mesothelioma patients involves some side effects, like neuropathy, that not all patients experience, but a significant number do.
While talking with a patient who had recently started chemotherapy for breast cancer, I discovered that she had some interesting points that I had not really considered about cancer treatments in general. Her major complaint was that the side effects of the chemotherapy – losing her hair, nausea, exhaustion – had all been explained, and she thought she knew what to expect. What she didn’t anticipate was her inability to plan and get things done, and that was really bothering her. She had planned to keep working through the chemotherapy, but she was disappointed that she needed to take more time off than she originally thought. She was experiencing insomnia, a problem that she had never had before.
Difficulty with insomnia, the inability to fall and stay asleep, is reported in 30% to 50% of all cancer patients, according to one study. Other studies say the rate might be as high as 75% of all cancer patients. The circadian rhythms are disturbed during cancer treatments. This is the internal biological clock located in the brain that helps regulate our body’s normal rhythms, including temperature, and hormone levels to maintain the natural sleep- wake cycle, during the 24 hour day. There is also some research that shows that circadian rhythm disruptions may even contribute to cancer itself.
What can help with insomnia?
- Relaxation exercises before bed, such as breathing, guided imagery, meditation, and relaxing your mind and body.
- Lifestyle changes like watching what and when you eat and drink might help. Limiting caffeine intake after a certain hour.
- Exercising and being more active also may help.
Are you anxious or depressed? These emotions are real and important to recognize. Cancer has upset your world and your family’s. Are you sleeping and napping in the day because you are tired or because you are depressed? Let your care team know about this problem. There are medications that might help. Don’t let this go- you need your strength to fight cancer and to give the chemotherapy a chance to work. There is treatment for insomnia- reach out.
If you have questions about any aspect of your mesothelioma care, please email me at [email protected].
Senators Introduce Legislation That Calls For U.S. Asbestos Ban
Senators Barbara Boxer (D-CA) and Edward Markey (D-MA) have introduced a bill that would strengthen the country’s chemical protection laws and specifically ban asbestos use.
The Boxer-Markey bill, called the Alan Reinstein and Trevor Schaefer Toxic Chemicals Protection Act, aims to reform the 1976 Toxic Substance Control Act (TSCA). According to a U.S. Senate press release, the bill’s key provisions include a requirement that the Environmental Protection Agency (EPA) act quickly to consider a ban on asbestos. Asbestos remains legal in the United States despite being a significant cause of occupational death. The bill also maintains states’ rights to protect people from dangerous toxic chemicals.
A report from The Hill says that the Boxer-Markey bill is an alternative to the bipartisan chemical reform bill introduced earlier in the week by Sens. Tom Udall (D-NM) and David Vitter (R-LA). That bill does not address the issues of states’ rights or an asbestos ban. Environmentalists, consumer advocates and Sens. Boxer and Markey claim that the Udall-Vitter bill was influenced by the chemical industry.
The namesakes of the Boxer-Markey legislation, Alan Reinstein and Trevor Schaefer, are both cancer victims. Alan Reinstein died from the asbestos-related cancer mesothelioma in 2006. He was the husband of Linda Reinstein, co-founder of the Asbestos Disease Awareness Organization (ADAO). Ms. Reinstein criticized the Vitter-Udall bill in an ADAO press release for not addressing asbestos, a human carcinogen that, according to the ADAO, claims 10,000 American lives and 107,000 lives worldwide each year.
Ms. Reinstein said she applauds Sens. Boxer and Markey for their leadership in taking steps to eliminate exposure to asbestos, the cause of the most occupational deaths in history.
Despite Dangers, Asbestos Remains Legal in U.S.
It has been known for decades that asbestos poses a danger to human health. A 1989 EPA-issued final rule to the Toxic Substances Control Act banned most asbestos-containing products, but this rule was overturned in 1991 by an appeals court.
The asbestos industry lobbied aggressively to overturn the ban and today it is still legal to manufacture, import, process and distribute a wide range of asbestos products, including cement, clothing, flooring and roofing products, vinyl floor tile and automotive components.
Not all asbestos products are legal, however. Regulations passed in the 1970s outlawed products such as insulation, patching compounds and artificial fireplace embers.
Asbestos has not been mined in the United States since 2002, but the mineral fiber is still imported on a large scale. United States Geological Society documents show that in 2013, the U.S. imported 870 metric tons of asbestos.
The chloralkali industry—an element of the chemical industry—accounts for two-thirds of U.S. asbestos consumption.
Know more about Mesothelioma and how you can deal with it.
Sources
- U.S. Senate press release
http://www.epw.senate.gov/public/index.cfm?FuseAction=PressRoom.PressReleases&ContentRecord_id=9351d8b8-fcb8-e5c8-70b0-dd77260efd45 - United States Geological Society documents
http://minerals.usgs.gov/minerals/pubs/commodity/asbestos/mcs-2014-asbes.pdf - ADAO press release
http://www.asbestosdiseaseawareness.org/archives/31896 - The Hill
http://thehill.com/policy/energy-environment/235504-boxer-introduces-her-own-chemical-reform-legislation
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