Month: January 2014
Finding Comfort in Stories After Losing a Loved One
Words are powerful things. They can lift spirits, they can bring comfort, they have the ability to calm us. When you are talking with someone who has lost a loved one to mesothelioma, or any reason for that matter, words need to be chosen with care.
For me, I found a lot of comfort in stories that people shared with me about Dad. I love hearing how he did something nice for someone, how he played a joke on someone, or how he fell for a joke that someone played on him. A relative even brought 50 cents to the viewing. It was from someone who owed it to Dad for a bicycle he sold to him 50 years ago. These things brought a smile to my face and joy to my heart.
Seeing how many people cared about Dad was overwhelming to me. Each person had something to share and just wanted to show our family that they support us and are here for us. Sometimes, just the presence of friends and loved ones says more than you could ever articulate with words.
A lot of people aren’t really sure what to say in this type of situation. Some said nothing, which is fine. Others simply told us that they didn’t know what to say! I appreciated these people who assured us of their prayers. After all, it’s what we needed (and still need) the most.
When you talk with a person who has lost someone dear to them, be genuine. It will be appreciated and treasured more than you can know!
ADAO Sponsors First Ban Asbestos Conference in Pakistan
The Asbestos Disease Awareness Organization has announced its support of the first ever one day national stakeholder’s conference Ban Asbestos Pakistan in Karachi, Pakistan on February 1. The event, with the theme “Awareness, Health & Safety,” is the result of years of research, persistence and collaboration between a Pakistani family and an international team determined to ban the toxic substance in the country.
Although the harmful effects of asbestos have been documented extensively, and the World Health Organization estimates over 100,000 people die each year from asbestos-related diseases, including mesothelioma, asbestos use is banned in just 55 countries, according to a tally maintained by International Ban Asbestos Secretariat. Asbestos use remains legal in the United States.
However, the Ahmed family, determined to prevent other families from losing a loved one to the hazards of asbestos, have shown that with diligence and resolve, they can make a difference. When Syed Mezab Ahmed and Syed Haroon Ahmed lost their father and brother, respectively, to cancer in 2007, they feared his death was due to asbestos exposure at his job at Dadex in Karachi, Pakistan. Dadex, which operates three factories in Pakistan – in Karachi, Hyderabad and Sunder Industrial Estate (near Lahore) – boasts on its website that it “has been manufacturing Chrysotile Cement (CC) pipe systems for over 45 years in Pakistan.”
The Ahmed family filed a criminal complaint in 2009 against the factory saying Mr. Ahmed’s cancer was caused by the “polluted environment of the industrial unit.” Although the case is still pending, the action spurred local and global anti-asbestos organizations into action to help raise awareness of the far-reaching dangers of asbestos in Pakistan and to rally others to urge the government to ban the product.
Through a report commissioned on the petition of the Ahmed’s, over two million residents in Karachi were found to be at danger of exposure to asbestos. According to the ADAO, in 2012, Pakistan National Assembly’s Standing Committee on Human Resource Development “recommended a complete ban on the import and use of dangerous chemical ‘asbestos’ in 22 industries of the country to safeguard the health of workers.”
Linda Reinstein, co-founder and President/CEO of the Asbestos Disease Awareness Organization, wrote in an article announcing the conference:
“The Ahmed family wants the same treatment for Pakistanis that other countries have fought for and won. They want the company that exposed people to deadly asbestos to be responsible for their medical care. They want the company to take action and to dispose of asbestos debris safely to prevent future asbestos exposure to workers, children and nearby residents of Karachi. And above all, they want Pakistan to ban asbestos.”
Ms. Reinstein and Lou Williams, a mesothelioma sufferer who lives in Australia and is the Asbestos Awareness, Information and Support Officer of the Bernie Banton Foundation, will be presenting to the attendees, including Pakistani dignitaries and experts in the field of mesothelioma and on the dangers of asbestos, via Skype.
“I am very, very proud of what they are doing with their conference and with the global support of everyone – it will be a good success and a start in the right direction,” said Lou in an email to MesotheliomaHelp.
The International Commission on Occupational Health, the world’s leading international scientific society in the field of occupational health, along with many other global organizations, calls for a global ban on the mining, sale and use of all forms of asbestos and the elimination of asbestos-related diseases. To accomplish the elimination of asbestos-related diseases the Commission urges “each and every individual country to implement a total ban on production and use of asbestos.”
The World Health Organization supports this position and reports that “the only way to prevent mesothelioma is by eliminating exposure to asbestos.” WHO is calling for a ban of asbestos use throughout the world.
See the ADAO website for more information about taking action to ban asbestos to prevent millions of cancer deaths.
Sources:
- Asbestos Disease Awareness Organization
http://www.cvent.com/events/2012-annual-asbestos-awareness-conference/archived-e6277e3d443b4c059bed43fc0937b530.aspx - ADAO website
http://www.asbestosdiseaseawareness.org/archives/19485 - International Commission on Occupational Health
http://www.icohweb.org/site/news-detail.asp?id=83 - two million residents in Karachi
https://www.thenews.com.pk/archive/print/631672-two-million-karachiites-face-cancer-threat - Dadex
http://www.dadex.com/product_services/pipesystems_and_roofings/chrysotile_cement.shtml - International Ban Asbestos Secretariat
http://ibasecretariat.org/alpha_ban_list.php
Nurse Encourages Mesothelioma Screening for Family Members
Mesothelioma is difficult enough to deal with when your loved one has been diagnosed with the disease. But if that is not enough to deal with, there is one more thing to think about: could it be possible that you are also susceptible to developing mesothelioma? Many people know where they were exposed to asbestos, but others may be unaware that they were exposed at all. Some people were exposed to asbestos after their parents or grandparents inadvertently brought the asbestos fibers home on their clothes from their jobs where asbestos was present. It is possible to develop mesothelioma from this secondhand exposure.
Although it may only be one offspring that demonstrates mesothelioma symptoms and seeks medical attention, my advice would be that all other family members be tested for mesothelioma. I recently ran into a patient who was diagnosed with mesothelioma, after her sister was diagnosed. Unfortunately, it does not stop there; another sibling has subsequently been diagnosed with the asbestos cancer.
Researchers have done a lot of work in this area. They have found that some people have an inherited gene that makes the patient predisposed to developing mesothelioma once exposed to asbestos. Not everyone exposed to asbestos will develop the disease, but if someone in your family has it is imperative to get yourself tested. Now, it is possible to be diagnosed early and without any symptoms evident. If you are not feeling symptomatic and you are diagnosed with mesothelioma, it could be in the early stages where you have the most favorable outcome.
Although this can be very scary, it is in the best interest of you and your family to know. It is hard to wrap your head around this, that you too could be affected with mesothelioma, but it may save your life.
Diagnosis with mesothelioma is usually confirmed with a biopsy. Every cancer center does testing differently, but it usually starts with a biopsy where a tissue sample is collected and sent to the pathology lab. When someone develops fluid around the lung, and has to have it drained or tapped, a sample of the fluid can also be sent off for pathology.
Tissue and fluid samples are the most common means of diagnosing mesothelioma, but a blood test can also help doctors identify the disease. The presence of molecular indicators called “biomarkers” can aid not only with diagnosis, but also with predicting disease aggressiveness. A mesothelioma biomarker test looks for a certain blood protein that is released by mesothelioma cells.
The protein is called SMRP, or soluble mesothelin-related peptide. The meso-marker measures the amount of SMRP in a person’s blood. Abnormally high levels may indicate the presence of mesothelioma. (The sarcomatoid type of mesothelioma tumors does not release this protein.) The U.S. Food and Drug Administration recommends physicians use this meso-marker assay in addition to traditional biopsies.
If you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, feel free to contact us.
Tips to Mesothelioma Patients from Rare Disease Sufferer, Sam Berns
Dealing with a rare disease like mesothelioma is not easy. Treatments such as surgery, chemotherapy and radiation are constant reminders of the battle raging inside your body. Managing cancer and its side effects can be stressful and depressing, but finding a way to focus on the positive aspects of your life can make a difference in your physical well-being and in your quality of life.
Sam Berns, a 17-year-old who recently passed away from the rare disease progeria, which causes rapid aging, was faced daily with obstacles, health issues and pain, yet he lived a full and happy life. When asked in an NPR interview what was the most important thing people should know about him, Sam responded simply: “I have a happy life.”
During an inspiring speech hosted by TEDx just months before he passed away, Sam offered his three secrets to happiness:
- Focus on what you can do, not what you cannot do.
- Surround yourself with people you want to be around.
- Keep moving forward and continue to strive for something else.
“I try hard not to waste energy feeling badly for myself,” said Sam. He added that instead of ignoring the feelings, he “lets them in so that I can acknowledge them, and do what I need to do to move past it.”
Many long-term mesothelioma survivors are living testaments to Sam’s outlook. Mavis Nye has battled pleural mesothelioma for over four years, and she is probably one of the happiest people you’ll meet. Keeping mesothelioma in check is not easy, but Mavis believes that the key to her longevity can be attributed to her joy of life. And, Mavis spends time with those who bring her joy.
“Ray [her husband] and I enjoy doing so much together,” said Mavis. “We are laughing all the time and enjoy camping together in the motor home. That’s when we can really relax.”
Mavis’s attitude is echoed by another mesothelioma warrior, Lou Williams. Lou, who has battled mesothelioma for nearly ten years, raised a toast to herself and other mesothelioma patients on New Year’s Day, saying: “Here’s to being here in 12 months time and to living well in the meantime – doing what we love – travelling, spending time with family and friends and fitting as much into our lives as we do now!”
Jan Egerton also offered a New Year’s resolution to all mesothelioma patients, encouraging “everyone in the mesothelioma community, whether you are a patient or a caregiver, to keep a positive attitude and to remember that for every bad day there will be a good one.”
Just like Sam, mesothelioma patients are faced with an uncertain future. But even when Sam was at his lowest and in the hospital fighting another complication, he focused his thoughts on looking forward to when he would be better. He was buoyed by his fourth philosophy, “I never miss a party if I can help it!”
Jennifer Gelsick Thinks of Her Father Three Months After He Loses His Fight With Mesothelioma
January 15 marked three months since I lost my Dad. A lot has changed, many adjustments have been made both internally and externally. Although life is not the same without him, we have been doing our best to carry on while carrying Dad with us.
For me, every day starts out a little differently. I used to call Dad every morning to check in, see how he was doing, and let him know what my plan for the day was. He loved hearing about our businesses. Where was Mikey working today? Do you have any meetings? He was so proud and interested, it made even the worst days of work worth it, knowing that I could share my stories with my Dad.
Every time something funny or remotely interesting happens, I always want to reach for the phone to call him. On Thanksgiving morning, as we got ready to make the trip to see my family, we put our dog in a sweater. It was funny and I knew Dad would get a kick out of it. I thought to myself, “Since Dad won’t be there today to see this, I’ll text him a picture.” Instantly, I felt a pain in my heart. They say that old habits die hard – how true.
Even though I have these lapses from time to time, I have been working hard to remember that Dad would want me to enjoy every second that God blesses me with, not to worry about him, especially since he’s now in Heaven. I talk to Dad a lot and that helps me. Sometimes, when I’m not sure what to do, it’s almost like he’s telling me what path to take. This comforts me so much; Dad always gave the greatest advice.
The pain of losing my father is still very fresh, but I feel like I can now handle it a little better. Talking to family members and friends, watching home movies, and just reminiscing about how wonderful he was now brings me comfort and not so much pain.
It’s been said that time heals all wounds. I’m not sure that this wound will ever be healed, but I guess we have to learn to tolerate the pain in some sense. With faith and trust in God, all will be well. For all of us who have lost a loved one, let’s keep working to find a cure for mesothelioma, so that others can avoid this wound.
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