Month: March 2013
Offering Words of Comfort to a Friend or Family Member
Sometimes, when a family member or friend is ill, you don’t know what to say. You worry about saying the wrong thing, asking too many questions, or appearing to be less than genuine, so instead you say nothing. It’s important to think before you speak to someone about their diagnosis of malignant mesothelioma, but also to be there for your loved one and show concern and support.
Even though you may not understand mesothelioma, keep in mind that the person you’re trying to comfort may not know a lot about it either. Questions about the disease itself may not be the best thing to discuss right off the bat. Trust me, it is a lot to take in! Also, realize that malignant mesothelioma is a serious thing; be careful not to shrug it off.
It might be best not to discuss where the person thinks they were exposed to asbestos, as that is neither here nor there at this point. Talking about others who might have had mesothelioma is a good topic to shy away from as well. Medicine and mesothelioma treatments are much more advanced now than they were even 5 or 10 years ago, and the survival rate is much better.
Whatever you say, be sure that it comes from the heart. If you are going to ask how someone is doing, listen. Don’t change the subject or try to lessen what they are going through. Rejoice with them in their triumphs and share in their struggles. Offer to help with specific things, but again, be sincere and follow through. Make plans once or twice a month to do something together, and be sure to do it. Platitudes mean nothing if they are not concrete.
Some things that my Dad was told that helped him so much were, “keep the faith!”, “God doesn’t only go half way”, and other uplifting messages of hope and trust in God. Also, never underestimate the importance of silence and saying a prayer together. My family spent and still spends a great deal of time praying. God will hear them and answer them.
Your loved one might have things they want to talk about, some of which may have nothing to do with meso. Let them guide the conversation and allow them to get some things off their chest if need be. They might not feel like talking about things that day, so let them take control and talk about their interests.
Don’t be afraid or discouraged to talk with someone about their illness, mesothelioma or otherwise. The key is to be sensitive to what they are going through and to be earnest and heartfelt in your conversations. They and their family will appreciate your presence and prayers!
Mesothelioma Survivor Jan Egerton Pens Book to Raise Research Funds
Jan Egerton enjoys a visit to the store.
Mesothelioma can be an all-consuming disease. The physical and emotional toll of dealing with the symptoms, treatments and side-effects can leave those battling the cancer overwhelmed and exhausted. For many, plans are put on hold and “living for the day” becomes a mantra. Jan Egerton, a long-time mesothelioma survivor from England, lives for each day as well, but she can’t stop hoping for a future that holds a cure for mesothelioma. Jan hatched a plan last year on how she could help make that a reality, and this month she published her 402-page novel and is donating a portion of the proceeds to raise funds for mesothelioma research.
Although Jan loves writing and has always wanted to write a book, she had primarily used her blog, “Mesothelioma – Jan’s Journey,” to fill the void. However, after one particularly contentious day at work in early May, Jan came home, sat down at the computer and created “The DreamWeaver’s Choice.” Jan was so focused on the story that “the words just tumbled out, and my poor fingers couldn’t keep up,” she said. Three weeks later she had completed her first draft.
“Writing, regardless of whether it’s fiction or mesothelioma-related helps me deal with the cancer, instead of the mesothelioma eating away at me from the inside,” said Jan in an email interview last week. “Writing has given it a way to come out and keep me sane.”
Writing also gave Jan an opportunity to give back to the mesothelioma community. Jan contacted Chris Knighton, founder of the Mick Knighton Mesothelioma Research Fund (MKMRF), an English organization that was established to raise awareness and fund crucial research projects for mesothelioma, to let her know that she wanted proceeds from the sale of her book to help fund research through the Mick Knighton Mesothelioma Research Fund.
For Jan’s previous work with MKMRF and her continued generosity to help fund research efforts by the organization, Chris named Jan Ambassador for MKMRF.
“Jan is a source of inspiration and hope to so many people living with mesothelioma, and she has surpassed herself once again by writing a novel with the proceeds going towards the Mick Knighton Mesothelioma Research Fund,” Chris told MesotheliomaHelp.org in an email.
Chris explained that an MKMRF Ambassador acknowledges the work of the Research Fund wherever and whenever possible; helps to raise its profile, and encourages fundraising to help the organization continue its work in the fields of research, support and campaigning so fewer and fewer people have to go through the pain and suffering mesothelioma brings both sufferer and their family.
“What better person could we have as an ambassador than Jan, a true mesothelioma survivor, and indeed it is us at MKMRF who are humbled and honoured to have her on board,” said Chris on naming Jan ambassador.
“The DreamWeaver’s Choice” is a complex story of the battle of good versus evil where the central characters are vampires and spirits, and a human detective with her beloved K-9, Bear Boy. The story moves from the 1800’s, when vampires roamed the streets of England and viciously took victims, to modern day where vampires still live in England but have divided into factions of “good” vampires who live among humans without harming them, and “bad” vampires who continue to stalk and attack unsuspecting Brits.
The good vampires rely on a sophisticated set of medicines and supplies to help them function normally, but their enemies are working hard to hijack and sabotage their efforts while reaping billions of dollars by extorting the desperate vampires needing the potions to remain part of society. The players in the book have deeply intertwined lives and knowing who to trust becomes a matter of life and death.
“I only hope the book does the charity justice and raises some much needed funds,” says Jan.
Jan self-published the book and is trying to promote it via word of mouth and social media. You can find information about the book at Novelist Jan and on Facebook at Bearboy Vampire Books. The book is available for Kindle at Amazon.com. USA readers can order here, UK readers can access the book here. Jan is currently working on a print version of the book.
Sources:
- Facebook at Bearboy Vampire Books
http://www.facebook.com/#!/pages/Bearboy-Vampire-Books/168388509977228 - Novelist Jan
http://novelistjan.blogspot.co.uk/
Understanding the Emotional Support Needs of Patients Undergoing Mesothelioma Treatment
Medical researchers at Memorial Sloan-Kettering Cancer Center in New York are currently conducting a clinical trial examining the emotional support and psychosocial needs of patients undergoing treatment for mesothelioma. The researchers are studying how mesothelioma, an aggressive form of cancer, affects patients’ emotional and physical well-being and quality of life.
Mesothelioma is a terrible disease caused by exposure to asbestos. It takes a toll on patients and their families. Patients receiving treatment for mesothelioma may experience mood swings, feelings of isolation and symptoms of anxiety and depression.
The laudable goal of the research is to find ways to reduce the physical and emotional strains of mesothelioma patients and develop better ways of coping.
As part of the clinical trial, mesothelioma patients are invited to join a therapeutic internet-based discussion group, allowing patients to take part from the comfort on their own homes. The small groups of three to five patients meet for approximately an hour once a week.
Patients who have been diagnosed with pleural mesothelioma, a cancer of the lining of the lung and who are undergoing treatment at Memorial Sloan-Kettering Cancer Center are eligible for the trial. Find contact information about the clinical trial.
Approximately, 2,500 to 3,000 people are diagnosed with mesothelioma each year in the United State. Most are older workers, retired workers and veterans who were exposed to asbestos in workplace or during military service. For patients who are diagnosed with less advanced mesothelioma, there are treatments available to try to manage the disease.
Mesothelioma Survivor and Family on the Lookout for a Breakthrough
Lately, it seems like there has been a buzz regarding possible new treatments for mesothelioma. This brings me even more faith that a cure is just on the horizon! Keeping up with the newest treatments, however, is confusing and difficult at times. Understanding the medical terminology and even the basics can be daunting and scary, but it is a gateway to hope and a cure.
Researchers have spent a great deal of time working towards the goal of curing mesothelioma permanently, and I believe that a breakthrough is on the horizon. Some of the treatments and procedures that my Dad was blessed enough to go through were fairly new or still in the clinical trial stage. Many of these recent developments have helped so many mesothelioma patients.
For a newly diagnosed patient, these treatments could literally be their lifeline. In the future, mesothelioma may not be as scary as it is today! Of course, no one wants to hear this diagnosis, but there will hopefully be a time soon when it can be said, “We can get rid of this permanently, no problem!”
We would not be where we are in the fight against mesothelioma if new, revolutionary procedures and techniques had not been conceived and brought to fruition. These treatments are not necessarily only for the newly diagnosed, they are also for survivors. These could be things to help prevent a recurrence, and to treat a recurrence if it were to occur. There may be something out there that could guarantee there would never be a recurrence, or add to the survivors quality of life. We have to be diligent to make these dreams a reality.
My Dad has been a part of new treatments, and they have been a Godsend. With prayer, trust in God, and faith, a cure will come! Countless people are awaiting the day when the announcement comes that a cure has been found. My family and I are among them, waiting to celebrate!
ADAO Conference Brings Mesothelioma Advocates Together
The 9th Annual Asbestos Disease Awareness Organization’s International Asbestos Awareness Conference will be held March 22 – 24 in Washington, DC. The conference, entitled “The Asbestos Crisis: New Trends in Prevention and Treatment,” will focus on the latest advancements in disease prevention, global advocacy, and treatment for mesothelioma and other asbestos-related diseases.
Asbestos is a known carcinogen and is proven to cause mesothelioma, lung cancer and asbestosis. The serious harm caused by exposure to asbestos is a nationwide and worldwide problem. In fact, the World Health Organization estimates 125 million people worldwide are exposed to asbestos in the workplace. In addition, they estimate 90,000 people die each year from asbestos-related lung cancer, mesothelioma and asbestosis. Close to 3,000 Americans are diagnosed each year with the deadly asbestos cancer.
According to the conference website, the conference includes “four powerful, cutting–edge sessions:”
- Medical Advancements: Diagnosing and Treating Mesothelioma and Other Asbestos-Related Diseases
- Patients and Caregivers: Navigating the Medical Maze
- Prevention: What Is It? Where Is It? What Do I Do?
- Advocacy: Global Ban Asbestos Action
Speakers at the conference include keynote speaker Dr. Aubrey Miller, Senior Medical Advisor and National Institute of Environmental Health Sciences Liaison to the U.S. Department of Health and Human Services; Karen Banton, widow of the late activist Bernie Banton and CEO of the Bernie Banton Foundation, an Australian foundation that provides support and information to asbestos-related disease sufferers and their families while raising awareness of the dangers of asbestos; mesothelioma survivors; ADAO staff; environmentalists; physicians; nurses and scientists.
Lou Williams, a mesothelioma survivor from Australia highlighted in an article last week on MesotheliomaHelp, will attend the conference as a representative of the Bernie Banton Foundation. According to the agenda, Lou will present “Mesothelioma Warriors Unite” March 24.
Honorees this year include U.S. Representative Lois Capps receiving the Tribute of Hope Award, Dr. Celeste Monforton receiving the Dr. Irving Selikoff Lifetime Achievement Award, Karen Banton receiving the Tribute of Inspiration Award and Mavis Nye, a mesothelioma patient, will be recognized with The Alan Reinstein Award.
ADAO was founded by asbestos victims and their families in 2004. ADAO seeks to give asbestos victims and concerned citizens a united voice to raise public awareness about the dangers of asbestos exposure. ADAO is the largest independent organization dedicated to preventing asbestos-related diseases.
See the ADAO website for more information on the conference.
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