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Blog – Mesothelioma Center – Vital Services for Cancer Patients & Families


Blog – Mesothelioma Center – Vital Services for Cancer Patients & Families

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Thu, 11 Apr 2019 18:48:12 +0000
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10 Shocking GIFs of Workplace Asbestos Exposure
https://www.asbestos.com/blog/2019/04/09/10-shocking-gifs-of-workplace-asbestos-exposure/
Tue, 09 Apr 2019 13:27:18 +0000

https://www.asbestos.com/?post_type=blog&p=44362
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Imagine working in a cloud of toxic mineral fibers that can lodge in your lung tissue permanently. It doesn’t cause any immediate symptoms, so you think nothing of it until years later — when you gradually lose your ability to breathe. In modern America, it’s difficult for most people to comprehend the full scale of…

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Imagine working in a cloud of toxic mineral fibers that can lodge in your lung tissue permanently. It doesn’t cause any immediate symptoms, so you think nothing of it until years later — when you gradually lose your ability to breathe.

In modern America, it’s difficult for most people to comprehend the full scale of the tragedy created by the asbestos industry. Fortunately, the Library of Congress hosts a digital copy of a silent film called “The Story of Asbestos,” so you can see for yourself how the industry put profit before people’s safety.

Produced around 1921 by the H.W. Johns-Manville Company, it illustrates mining and manufacturing processes that lead to thousands of deaths from asbestos exposure diseases such as mesothelioma, asbestosis and lung cancer.

The following scenes take place at a mine in Arizona and a factory in New Jersey — both owned by Johns-Manville.

1. Blasting Asbestos Out of the Ground

The first step is to drill a hole into asbestos-containing rock and then pack it full of dynamite. The resulting explosion makes it easy to collect fragments of asbestos ore.

The dust cloud from the blast is packed with a high concentration of toxic asbestos fibers.

2. Sorting Asbestos into Grades

In the cobbing room, workers smash chunks of asbestos ore with hammers. Then they remove the asbestos by hand and sort it into various grades of fiber.

This is a perfect example of turning a nonfriable material (asbestos ore) into a friable material (loose asbestos fibers). Friable asbestos materials are the most dangerous.

3. Bagging Asbestos for Shipment

As asbestos fibers pour down a chute from upstairs, workers stuff it into sacks. The fluffy consistency of asbestos means it can be stomped down by standing in the bag.

The workers in this scene are handling and stomping on nearly pure asbestos, without any safety protection. Today, U.S. regulations state that workers must be given respiratory protection if their workplace exposes them to more than 0.1 asbestos fibers per cubic centimeter of air.

4. Receiving Asbestos at the Factory

At the factory, workers walk through a warehouse full of asbestos received from the mine. In the film, a title card proclaims, “10,000 tons of Asbestos in this room.”

In the boom years from 1925 to 1929, the U.S. consumed more than 200,000 tons of asbestos per year. U.S. asbestos consumption peaked in 1973 at 803,000 tons, according to the U.S. Geological Survey.

5. Crushing Unrefined Asbestos

Workers pour asbestos from the mine into a crusher. The heavy rollers of the crusher finish separating the asbestos fibers from the other minerals they are mixed with. These other minerals are then shaken out as sand, leaving pure asbestos.

The process of crushing and shaking out the asbestos filled the factory with airborne asbestos fibers. Microscopic asbestos fibers cannot be seen, smelled or tasted. Inhaling them causes no immediate symptoms, but it can leads to horrible diseases such as mesothelioma later in life.

6. Making Asbestos Paper Pulp

Workers pour refined asbestos into a machine that turns it into paper pulp. The pulp is then pressed and dried to make asbestos paper.

Asbestos was also spun into yarn, which was used to make gasket material and brake linings. Cement mixed with asbestos was used to build and repair boilers.

7. Cutting and Crimping Asbestos Paper

Some asbestos paper is cut into flat sheets for millboard. Other asbestos paper is crimped for making cardboard.

Flat sheets of asbestos paper were also soaked in asphalt to manufacture roofing material.

8. Winding Asbestos Pipe Insulation

Workers wind asbestos paper into rolls. Using crimped paper creates air spaces between the layers of paper, making it better for insulation.

Asbestos paper was popular because it was fireproof and heat-resistant. However, cutting or tearing it inevitably leads to toxic exposure.

9. Trimming and Splitting Pipe Insulation

Workers feed rolls of asbestos paper through power saws that trim them to a standard size and split them lengthwise. Cutting each roll in half made it easy to install the insulation on high-temperature pipes.

The power saws constantly filled the work environment with toxic asbestos dust. Historically, most asbestos-related diagnoses have traced back to occupational exposure.

10. Organizing Different Sizes of Asbestos Insulation

Workers place assorted types of asbestos pipe insulation in a warehouse. The daily output of the Johns-Manville factory could cover several miles of pipe.

Aside from paper pipe insulation, the factory also manufactured molded pipe insulation made from a mixture of asbestos and magnesia. Much of the pipe insulation was not split lengthwise but instead shipped whole, so insulators could cut it as needed on site.

Many of the workers at mines and factories like those pictured above paid a terrible price for working with asbestos. The asbestos industry covered up the risks of asbestos exposure as long as it could, but ultimately the truth came to light.

However, special interests in Washington, D.C., continue to work on behalf of the asbestos industry. This is why asbestos is still not banned in the United States.

The post 10 Shocking GIFs of Workplace Asbestos Exposure appeared first on Mesothelioma Center – Vital Services for Cancer Patients & Families.

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Cancer-Related Stress: Understanding Stress and Coping Effectively
https://www.asbestos.com/blog/2019/04/04/coping-cancer-related-stress/
Thu, 04 Apr 2019 14:10:48 +0000

https://www.asbestos.com/?post_type=blog&p=44279
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Mesothelioma thrusts cancer patients and their families into a whirlwind of stress. The stress response to a cancer diagnosis is normal: Racing thoughts, fast heart rate, sweating, muscle tension and other physical and emotional changes. We refer to these initial stressful feelings as “acute stress.” All humans possess an innate physical response to danger called…

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Mesothelioma thrusts cancer patients and their families into a whirlwind of stress.

The stress response to a cancer diagnosis is normal: Racing thoughts, fast heart rate, sweating, muscle tension and other physical and emotional changes. We refer to these initial stressful feelings as “acute stress.”

All humans possess an innate physical response to danger called the “fight or flight” response. Stress prompts us into action to fend off threats to our well-being.

But left unchecked, stress may become a long-term issue, called “chronic stress,” that has many negative health implications. It is important for cancer patients and their loved ones to understand the potential impacts of chronic stress and explore healthy coping strategies.

Sensory-based coping strategies can provide simple ways to refocus your attention away from stressful situations or negative thoughts.

Stress-Related Health Complications for Cancer Patients

Dealing with an aggressive cancer such as mesothelioma is overwhelming for most people. Patients may find themselves unable to continue working, spouses have to take on new roles as caregivers, and families struggle to establish a new normal that incorporates fighting cancer into their daily routines.

The American Society of Clinical Oncology asserts that dealing with cancer is likely one of a patient’s most stressful life events. Additional stressors — such as financial troubles, strained relationships and cancer treatment — may hinder a patient’s stress management capabilities.

Experiencing chronic stress negatively impacts the immune systems of cancer patients, making them more susceptible to additional health problems.

The National Institute of Mental Health published a fact sheet that further explores stress-related health complications. In addition to weakening the body’s immune system, stress also negatively impacts the digestive and cardiovascular systems.

Many people dealing with chronic stress experience sleep difficulties, headaches and gastrointestinal symptoms. Additionally, stress has negative effects on patients’ emotional well-being, exacerbating feelings of sadness and anger.

Taking Back Your Control

The first step toward taking back control from life’s stressors is to recognize when stress becomes unhealthy. Then you can evaluate your family’s situation to explore small ways to reduce stress.

Acute stress is a completely normal response to the initial diagnosis of cancer. But when heightened levels of stress become part of a patient or family member’s daily routine, the stress escalates to a chronic condition.

The American Society of Clinical Oncology website presents several tips for cancer patients about managing stress.

  • Appointment/Activity Scheduling: Families can be overwhelmed with doctor appointments and well-intended visits from friends and relatives. Scheduling just one appointment per day, or having designated “visit days” and a specific “fun activity day,” may help reduce stress.
  • Delegating Tasks: Caregivers experience stress as they assume their new role while simultaneously maintaining their other household duties. Delegating small tasks to other family members and friends can reduce the amount of work for the primary caregiver.
  • Shifting Focus: Constant worrying leads to heightened levels of anxiety. Redirecting your focus to tangible, productive tasks can help reduce stress. Focus on problems that you can solve.

Finding balance while dealing with mesothelioma can increase your resiliency. It is important to discuss how you feel with your oncology team. Doctors and nurses can help identify the right resources and support to help patients and caregivers maintain their physical and emotional well-being.

Using Sensory-Based Coping Strategies to Manage Stress

Aside from making small changes to reduce exposure to stressors, cancer patients and their families can also implement adaptive coping strategies. These are techniques and activities used during and after exposure to stress to help reduce its negative impact.

There is a wide range of coping and relaxation techniques, so most people explore several. As a therapist, I help others find the strategies that work best to build their resiliency and decrease their stress.

Some of the most effective adaptive coping strategies I teach in counseling include sensory-based techniques. These coping skills appeal to the senses to shift a person’s focus away from a stressful situation or negative thoughts and toward a here-and-now sensory experience.

Ideas for Exploring Sensory-Based Coping Strategies

  • Visual: Many people find it relaxing to leaf through old photo albums, read books and magazines, or create works of art by drawing or painting.
  • Olfactory: Aromatherapy is a well-known strategy to assist with relaxation. A comforting scent from a wax warmer, lotion or essential oil may help decrease stress.
  • Gustatory: Sometimes tasting something can take us to another place. Actively attending to the sensory experience of a familiar or comforting flavor can be relaxing.
  • Tactile: Having a hands-on sensory experience can be very relaxing. Some useful tactile sensory resources include stress balls, puzzle cubes and putty.

Personalizing the experience is imperative when developing sensory-based coping strategies for managing your stress. For example, a person experiencing nausea might not be open to exploring olfactory-based strategies. Similarly, if a person has hearing difficulties, auditory strategies might not be as effective.

Remember, a coping strategy shouldn’t be difficult to use or expensive. It helps to be open to new experiences and have several options from which to choose.

The post Cancer-Related Stress: Understanding Stress and Coping Effectively appeared first on Mesothelioma Center – Vital Services for Cancer Patients & Families.

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ADAO Set to Launch 15th Annual Conference
https://www.asbestos.com/blog/2019/04/03/adao-15th-annual-conference/
Wed, 03 Apr 2019 14:04:12 +0000

https://www.asbestos.com/?post_type=blog&p=44288
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Linda Reinstein doesn’t just talk about a world without the threat of asbestos disease. She works tirelessly toward making it happen. Reinstein co-founded the Asbestos Disease Awareness Organization in 2004 when her husband, Alan Reinstein, was diagnosed with malignant pleural mesothelioma, the deadly cancer caused by exposure to asbestos. Her life has never been the…

The post ADAO Set to Launch 15th Annual Conference appeared first on Mesothelioma Center – Vital Services for Cancer Patients & Families.

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Linda Reinstein doesn’t just talk about a world without the threat of asbestos disease.

She works tirelessly toward making it happen.

Reinstein co-founded the Asbestos Disease Awareness Organization in 2004 when her husband, Alan Reinstein, was diagnosed with malignant pleural mesothelioma, the deadly cancer caused by exposure to asbestos.

Her life has never been the same.

On April 5, Reinstein will host her organization’s 15th Annual International Asbestos Awareness and Prevention Conference in Washington, D.C. The three-day conference hopes to attract a unique mix of cancer patients, asbestos experts, trade union members, lawmakers and doctors who all have one thing in common: Her cause.

“Everything I’ve done through the last 15 years has been about laying the foundation to finally ban asbestos and prevent exposure to eliminate all asbestos disease,” she told The Mesothelioma Center at Asbestos.com. “This became my life’s work.”

Becoming America’s Leading Voice

Alan died in 2006, leaving behind a 10-year-old daughter and a widow whose relentless passion for the cause has made her America’s leading voice for asbestos awareness.

“It’s been tough, but there’s no crying in baseball. Alan is gone. If I would not have continued this fight, he would have died in vain,” she said. “And that just wasn’t an option for me. We’re making a difference.”

Still doing much of her work from an in-home office in Southern California, Reinstein and ADAO have prodded the country closer to an asbestos ban.

She speaks regularly on the topic of banning asbestos, making presentations on national and international stages from the British House of Commons and the Mexico City Parliament to the U.S. Environmental Protection Agency.

In the last 15 years, ADAO has hosted 13 congressional staff briefings. It has worked with the U.S. Senate to pass 15 Asbestos Awareness Week resolutions. Reinstein and ADAO also have helped secure six asbestos warnings from the U.S. Surgeon General.

Making Things Happen

ADAO was the catalyst behind the Alan Reinstein Ban Asbestos Now Act of 2019 introduced in the U.S House of Representatives and U.S. Senate earlier this year.

The bipartisan bill would toughen the current Toxic Substances Control Act and prohibit the commercial manufacture, processing and distribution of all asbestos and asbestos-containing mixtures.

Throughout the past 15 years, similar versions of the bill were introduced, but they stalled in the legislative process. Congressional support has increased significantly this year, giving the bill a fighting chance.

“When I started this, I never knew how long it takes to shape public policy. It’s glacially slow,” Reinstein said. “But it’s progressing. Will I be happy with a ban? Hell yes. Would I be done working? No way. There’s still so much legacy asbestos out there killing people.”

Conference Becomes Annual Highlight

Throughout Global Asbestos Awareness Week, which runs from March 31 to April 6, ADAO will showcase photographers, filmmakers and musicians who have joined the fight against asbestos.

“Hear Asbestos, Think Prevention” is the theme for 2019.

ADAO’s conference, which is unmatched in size and scope within the asbestos community, will open Friday with the inaugural March for Justice and Remembrance. It will start at the Lincoln Memorial Reflecting Pool and end on Capitol Hill.

Sessions Feature Experts and Patients

Mesothelioma patients and family member of those who died from the asbestos-related disease will open each session.

The five sessions are titled:

  • Progress and Challenges from the Frontline
  • Medical Advancements: Diagnosing and Treating Mesothelioma and Asbestos-Related Diseases
  • Prevention: What Is It? Where Is It? What Do I Do?
  • Advocacy: Global Ban Asbestos Action
  • Art and Advocacy

Speakers Keep Returning to Conference

Many of those presenting at the conference are return speakers. They are drawn by their belief in Reinstein and what she does.

Retired Assistant U.S. Surgeon General Dr. Richard Lemen and environmental consultant Barry Castleman have attended each conference since 2005.

Marilyn Amento also plans to participate. She is the widow of Joe Amento, who died from mesothelioma, and she has helped the organization in various roles. Reinstein’s daughter Emily will also be in attendance.

“I don’t know if any other organization has accomplished what we have in 15 years,” Reinstein said. “I’m proud of what we’ve done. I’ll be doing this until I’m 100.”

The post ADAO Set to Launch 15th Annual Conference appeared first on Mesothelioma Center – Vital Services for Cancer Patients & Families.

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Dealing with Mesothelioma Recurrence: Pick Up and Move On
https://www.asbestos.com/blog/2019/03/21/mesothelioma-survivor-cancer-recurrence/
Thu, 21 Mar 2019 14:29:28 +0000

https://www.asbestos.com/?post_type=blog&p=44017
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When I first met my medical oncologist, Dr. David Jackman, he told me my mesothelioma would never fully go away. It was always going to be there and could return — in full force — at any moment. When I went into remission for the second time, and Jackman told me the cancer was unnoticeable…

The post Dealing with Mesothelioma Recurrence: Pick Up and Move On appeared first on Mesothelioma Center – Vital Services for Cancer Patients & Families.

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When I first met my medical oncologist, Dr. David Jackman, he told me my mesothelioma would never fully go away.

It was always going to be there and could return — in full force — at any moment.

When I went into remission for the second time, and Jackman told me the cancer was unnoticeable on scans, part of me knew it was just a matter of time.

I was a month away from having two years of clean scans when I received the news: Tumors had returned near one area of my heart. Even worse, two additional spots were showing on the CT scan — one in the front of my chest wall and one in the muscle on the side of my chest wall.

The mesothelioma was back, and it had spread.

Your mind starts to wander in these situations. How quickly will it grow this time? What triggered it? Will the same treatments work?

Muscle pain and tightness in my chest alerted me that something may be wrong. I’m counting it as a blessing that I was proactive and had it checked out, rather than waiting until my next scheduled scan and writing the pain off as an unrelated condition.

I must admit that the initial news of recurrence was a kick in the gut. But I equate it to my dog jumping in my lap. It’s surprising at first, but then it’s over. You pick up and you move on.

Bad Reaction to Chemotherapy This Time Around

I started my third round of chemotherapy — my first session in nearly two years — two days after the Super Bowl. I had to navigate closed streets and traffic from the New England Patriots’ parade in Boston as I found my way to Dana-Farber Cancer Institute.

This Mainer was more nervous about dealing with all the commotion from the celebration than getting the chemo drugs pumped into my veins.

I received the same drug (Alimta) and same dosage as my previous two rounds of chemotherapy. For whatever reason, this one didn’t go as well.

After the first session, I experienced extreme fatigue, chills, dizziness and flu-like symptoms that lasted three or four days.

The next session, three weeks later, was even worse. I could barely get out of bed for more than a week. I couldn’t keep down food. I was just sleeping all the time.

I knew something had to change. I spoke with Dr. Jackman and he agreed we could postpone the next session. If the side effects don’t get better, we’ll move on to other options, including taking the immunotherapy drug Keytruda.

Maintaining Quality of Life

In my first meeting with Dr. Jackman after my recurrence, I brought up a treatment option we’d never discussed before.

What if I did nothing?

My brother — who accompanied me to the appointment that day — looked surprised when I asked that question. Jackman, who I respect for being a straight shooter, told me I’d have six months to a year.

I decided that wasn’t long enough, and we began discussing treatment options.

A third round of Alimta was the logical first choice, since it seemed to be effective the first two times. I’m at the point where I’m willing to try other treatments such as immunotherapy, but only with the caveat that I maintain a good quality of life.

I want to continue to work my three part-time jobs. I want to continue to spend quality time with my family and friends and do all the things I enjoy.

I’ll take quality over quantity any day. The way I felt after my last chemo treatment, I nearly said to call hospice, because I felt that bad.

Will I continue treatment if that’s how I’m going to feel? Absolutely not.

If I can continue to live the life that makes me happy, I’m OK with it. A little discomfort or inconvenience related to side effects is not a big deal.

If it’s going to cause side effects that interfere with how I live my life, that’s not acceptable. When I dismissed the six months to a year, it was with mindset that I would still be able to work and live the way I want.

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Meet the Group with Highest Mesothelioma Mortality Rate in the World
https://www.asbestos.com/blog/2019/03/19/asbestos-problem-australian-aboriginals/
Tue, 19 Mar 2019 16:17:45 +0000

https://www.asbestos.com/?post_type=blog&p=44020
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The Karijini National Park in Western Australia is a natural wonder. Sprawled over 193,000 square miles of the Hamersley Range deep in the heart of the Pilbara Region, the hauntingly beautiful landscape of mountain ridges, bottomless escarpments, spectacular gorges and cascading waterfalls is the traditional home of the Banyjima, Kurrama and Innawonga aboriginal people. Their…

The post Meet the Group with Highest Mesothelioma Mortality Rate in the World appeared first on Mesothelioma Center – Vital Services for Cancer Patients & Families.

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The Karijini National Park in Western Australia is a natural wonder.

Sprawled over 193,000 square miles of the Hamersley Range deep in the heart of the Pilbara Region, the hauntingly beautiful landscape of mountain ridges, bottomless escarpments, spectacular gorges and cascading waterfalls is the traditional home of the Banyjima, Kurrama and Innawonga aboriginal people.

Their empathy and respect for the area comes from their vast knowledge of its land and water as well as the customs and traditions handed down from generation to generation.

The contemporary and archaeological significance of Karijini National Park to aboriginal people is evident in paintings on cave walls in numerous areas of the park.

Concerned more for what was on the land than beneath it, the aboriginal people of this area didn’t know that toxic asbestos lurked in the Wittenoom Gorge until mining operations began in the mid-1940s.

The Colonial Sugar Refinery started blue asbestos mining operations at the site in 1943 and employed aboriginal men and women as pick miners.

Joining the thousands of Europeans who flocked to the Pilbara to take advantage of the mining boom, the aboriginal people didn’t know their world was about to be torn apart.

Because of their prolonged exposure to asbestos, the aboriginals have the highest mortality rate from mesothelioma than any other group in the world.

Aboriginal cave artwork

Aboriginal cave artwork in Western Australia.

Asbestos Exposure Rampant in Wittenoom Mine

Conditions at the mine were appalling. Spending long hours underground, the workers were issued simple picks and shovels to free seams of asbestos from solid rock.

The dust from this exercise constantly rose into the air and surrounded them like a cloud.

Sometimes it was so thick they could barely see their hands in front of their faces. The job of shoveling freed asbestos into jute bags usually fell to the aboriginals.

At no time were they offered masks to prevent inhaling the deadly fibers.

The end of a work day brought no relief. As the aboriginals made their way out of the dusty mine shafts, they were confronted with asbestos contamination as far as the eye could see.

Clouds of asbestos-laden dust blanketed the town. Asbestos tailings (residue of mined asbestos) were used to suppress dust and heat on road verges, backyards, school ovals, a local drive-in and the local race course.

Women and Children Also Exposed

Every aboriginal family took part in asbestos mining operations in Wittenoom in some way. Those who didn’t work in the mine loaded and unloaded bags of asbestos onto trucks used to transport the mineral to port of Roebourne, located roughly 125 miles north of the town.

The trucks were also a popular form of transport for aboriginal family members wanting to visit the port or other tribes in the area.

Perched high on the bagged asbestos, they were soon covered in dust that seeped easily out of the jute bags. Unaware of the danger, they enjoyed the drive and thought of it as an adventure.

The aboriginal children didn’t think anything of the contamination. They would regularly climb asbestos tailings and roll down the piles to cool pools of water.

Aboriginal birthing pool

This clear, crystal water oasis is where the aboriginals of Wittenoom Gorge used to go to give birth.

Asbestos Exposure Continued After Mining Stopped

Colonial Sugar Refinery ceased asbestos mining in 1966. When the workers left, the aboriginals remained, along with 3 million tons of asbestos tailings spread across their land.

This group now has the highest mortality rate of mesothelioma in the world. Adding to the tragedy, many died when they were in their 40s.

The exact number of aboriginal deaths linked to asbestos cannot be determined because of lack of medical data.

However, it is known that thousands of people who lived and worked in Wittenoom died of mesothelioma or other asbestos-related diseases.

Tragically, this trend is likely to continue for a very long time.

The mounds of deadly asbestos tailings — so immense they can be seen from space — continue to contaminate the air, land and water of the area.

Wittenoom Gorge Elders Demand Tailings be Cleaned

What to do about the problem of asbestos in Karijini Park has plagued Australian officials for over 50 years.

But despite feasibility research regarding a cleanup of the region and reports that rain and erosion had significantly spread asbestos into the creeks that flow into the Fortescue River catchment, nothing was done.

In 2018, following the advice of Barrister John Gordon, who specializes in asbestos litigation, the Native Title Holders Corporation passed a resolution considering legal action against the local government.

Sadly, nothing has come of it.

“The State Government, in the interests of public health, recognizes the importance of resolving historic issues of asbestos contamination in the Wittenoom area,” officials said in a statement. “The Government is working through this complex issue to provide certainty to the community. We will continue to engage in discussions with the community and relevant stakeholders.”

The aboriginals believe the reason their demands have fallen on deaf ears is because of the millions of dollars it would cost to remove the asbestos from their land.

They are probably right, but what about the value of human life?

Surely the government should be doing whatever it takes to clean up the toxic mess responsible for so many aboriginal deaths.

How many more generations must suffer and die of mesothelioma before something is done?

The post Meet the Group with Highest Mesothelioma Mortality Rate in the World appeared first on Mesothelioma Center – Vital Services for Cancer Patients & Families.

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Coping with Grief Through the Eyes of a Mesothelioma Widow
https://www.asbestos.com/blog/2019/03/11/grief-eyes-mesothelioma-widow/
Mon, 11 Mar 2019 13:49:23 +0000

https://www.asbestos.com/?post_type=blog&p=43862
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There have never been truer words spoken than the well-known saying, “You never know what it’s like until it happens to you.” Before my husband Brian became terminally ill with mesothelioma, I assumed grief was a period of sadness following the death of a loved one. I soon discovered there is a lot more to…

The post Coping with Grief Through the Eyes of a Mesothelioma Widow appeared first on Mesothelioma Center – Vital Services for Cancer Patients & Families.

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There have never been truer words spoken than the well-known saying, “You never know what it’s like until it happens to you.”

Before my husband Brian became terminally ill with mesothelioma, I assumed grief was a period of sadness following the death of a loved one.

I soon discovered there is a lot more to grief than sadness, and the grieving process can begin long before a loved one actually dies.

Grief, otherwise known as bereavement or mourning, is the process of accepting and coming to terms with loss. It is particularly relevant to the emotions we experience because of death, but anticipatory grief occurs when we live with the expectation of a loss.

It is important to understand the stages of the grieving process and that no two people will experience grief in the exact same way.

Learning to Live with Grief

Anyone who has lost a loved one will tell you there is no “getting over” grief.

How could there be? Death does not put an end to the love you have for someone or the number of times you will miss their presence. But life must go on, and in our own way and in our own time, we learn to live with our grief.

Below are some of the things that helped me on my grieving journey.

Acknowledging My Emotions

One of the things I found most helpful during my grieving journey was writing my feelings down into a daily journal.

Acknowledging my fear, anger, helplessness and despair in this way brought me such relief. I came to think of my journal as my own personal counselor, available to me whenever I needed it.

Making Affirmations

Affirmations are simple, powerful sentences you can put together to help control your thoughts and focus on things you have done — or wish to do — in a positive way.

The four affirmations I made and repeated to myself each day were:

  • I will make each day as peaceful and happy as I can.
  • I will take care of my body and mind and believe I have plenty of reasons for living.
  • I will survive and carry on.
  • I will embrace life and live it to the fullest for the remainder of my days.

Giving Myself Permission to Heal

For days, weeks and months after Brian died, I would deliberately evoke memories of him by pouring over old photos and videos of us, knowing they would make me cry.

One day I came to realize I was causing myself unnecessary pain.

Instinctively I knew memories — some happy, some sad — would come to mind often and that many would bring me to tears.

By letting them come naturally, I would find some relief. Giving myself permission to heal in this way greatly improved my quality of my life.

Living in Brian’s Memory

It’s been 17 years since Brian died. I’m now remarried to a wonderful man who also lost his spouse to cancer.

I am happy and at peace with my life. Regardless, there is a part of me that still longs for Brian and the life we shared.

After 37 years by his side, he shaped me into the person I am today. I continue to do and say many of the things we did together, in his memory.

The post Coping with Grief Through the Eyes of a Mesothelioma Widow appeared first on Mesothelioma Center – Vital Services for Cancer Patients & Families.

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Crisis Communication Best Practices for Mesothelioma Caregivers
https://www.asbestos.com/blog/2019/02/28/mesothelioma-caregiver-crisis-communication/
Thu, 28 Feb 2019 19:50:43 +0000

https://www.asbestos.com/?post_type=blog&p=43627
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Life moves pretty fast these days, especially for members of the mesothelioma community. While attending appointments, exploring treatment options, running errands and providing care for a loved one facing mesothelioma, caregivers may find it difficult to keep family members informed. For larger families, communicating is even more complicated. Keeping my family informed during my father’s…

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Life moves pretty fast these days, especially for members of the mesothelioma community.

While attending appointments, exploring treatment options, running errands and providing care for a loved one facing mesothelioma, caregivers may find it difficult to keep family members informed.

For larger families, communicating is even more complicated. Keeping my family informed during my father’s battle with mesothelioma was tedious at times.

Most families have a desire to keep in touch and have genuine concerns for their loved one facing cancer.

Cancer patients may not feel up to making phone calls or regularly sending messages to update family members. Caregivers may not have the time to communicate with friends and loved ones.

Poor communication among family members can cause anxiety and unnecessary stress for families dealing with cancer.

Implementing an efficient communication strategy may help families overcome the challenges of keeping others informed. With a little planning and coordination, family caregivers can break down barriers that hinder adequate communication.

Keeping everyone up to date regarding their loved one’s health, physical and emotional needs and necessary support is more conducive to creating a healing environment.

Typical Barriers to Good Communication

When families deal with cancer, their stress levels rise.

People under pressure must exhibit additional effort to manage emotions.

Adequate communication is a task that may be more difficult during times of heightened stress. Further complicating communication is the emotional intensity of information being shared and the sense of urgency of relaying updates to intended recipients.

My family seemed to run into several roadblocks while trying to keep loved ones updated regarding my father’s health.

Some common communication barriers my family encountered include:

  • Time Constraints: Patients may not feel up to spending time telling family members and friends about their current health situation. There were times my father didn’t want to talk about his cancer. Caregivers may not have time to maintain lines of communication either. Mom would commonly tell people she didn’t have time to talk while she cared for Dad.
  • Misinformation: I recall several instances in which messages between my family members transformed into “gobbledygook.” We didn’t purposefully misinform each other, but sometimes our information got mixed up. Once we were confused, it was nearly impossible to set the record straight.
  • Misunderstanding: When doctors diagnosed my father with mesothelioma, none of us had heard the term before. We weren’t familiar with treatment options or what implications treatment might have for Dad’s quality of life. Maintaining accuracy in medical updates is difficult if the communicator or recipients don’t understand the information presented.

Clearing the Confusion

Through our family’s experiences with finding time to communicate, misunderstanding messages and misinterpreting information, we learned a few things about keeping everyone up to date about Dad’s health.

Families may benefit from designating one person to keep others informed.

Taking a group approach to communicating can help get everyone on the same page quickly.

Having a previously delegated chain of information can alleviate some of the stress of relaying updates as well.

Social media may also break down communication barriers such as time constraints and distance.

  • The Designated Communicator: Patients and caregivers may determine one family member is best suited for getting the word out. Some people have the gift of gab, and what better time to use this skill? This is a perfect job for a loved one who doesn’t live locally, but still wants to help. It is the appointed communicator’s duty to call, message or email others, keeping them informed of their loved one’s health, family events or other important updates.
  • The Group Approach: There are many ways to communicate with groups of people at the same time. Through modern technology, people can use group chat, conference calls, group messaging or simply speaker phone in a room full of loved ones. The group approach to communication allows for groups of family members to hear an update simultaneously, saving caregivers precious time and energy.
  • Chain Communication: The term chain refers to a system of loved ones who each take responsibility for notifying one person in the family of an update. That person will relay a message and send it to another family member in the chain. This decreases the time and effort of telling the update multiple times.
  • Social Media: Modern technological advances such as the rise of the internet makes keeping in touch with friends and family members faster and easier. Social applications such as Facebook break down distance barriers to communication. It is important to remember a patient’s personal preferences when posting updates or engaging in group messages. A patient may not want their health information discussed in a public forum.

Despite all of the resources available for families, mesothelioma caregivers gain expertise through hands-on experience.

Through my family’s challenges of keeping loved ones informed, we learned it is much easier to allow others to help with relaying messages.

We came to realize it is easier to report to a group one time, rather than repeating the same update to each family member.

Social media wasn’t available back in the 1990s when my father faced mesothelioma, but my family could have benefited from such a valuable communication resource.

Sometimes, the unknown elements of dealing with cancer are more anxiety-provoking than the anticipated challenges that accompany a diagnosis.

Excellent communication among friends and family chip away at the unknown one conversation at a time.

Keeping loved ones informed eases worries and focuses everyone’s attention toward the next goal.

The post Crisis Communication Best Practices for Mesothelioma Caregivers appeared first on Mesothelioma Center – Vital Services for Cancer Patients & Families.

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A Cancer Diagnosis 40 Years After a Hospital Renovation
https://www.asbestos.com/blog/2019/02/25/cancer-prevention-mesothelioma-nurse/
Mon, 25 Feb 2019 15:02:48 +0000

https://www.asbestos.com/?post_type=blog&p=43277
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I worked at the Osteopathic Hospital of Maine, now part of Maine Medical Center, in the 1970s during a major renovation of the Portland-based facility. I remember vividly what they were doing and how nurses like myself were impacted by the construction. Medical staff at the hospital were rerouted through a corridor of the building’s…

The post A Cancer Diagnosis 40 Years After a Hospital Renovation appeared first on Mesothelioma Center – Vital Services for Cancer Patients & Families.

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I worked at the Osteopathic Hospital of Maine, now part of Maine Medical Center, in the 1970s during a major renovation of the Portland-based facility.

I remember vividly what they were doing and how nurses like myself were impacted by the construction.

Medical staff at the hospital were rerouted through a corridor of the building’s boiler room to clock in and clock out each day for work. I remember walking by plastic sheeting separating us from construction areas and passing by boiler-room pipes to get to the back stairway up to the main floor.

The renovation took several months. At the time, I didn’t think anything of it. If anything, we were excited to be getting a new front lobby area and a renovated X-ray department.

This was during the height of asbestos use in America, when construction companies used a range of asbestos-containing materials for projects. The only thing I knew about asbestos at the time was that it was a fire retardant.

But I never suspected the dust stirred up from the renovation would be harmful to my health.

It wasn’t until around 2000 that I really started to become more aware of the dangers of asbestos. I remember seeing countless stories on the news about abatement of the mineral in schools and old buildings.

Mesothelioma wasn’t something I had researched. I never met anyone with it in my 43 years as a registered nurse. It was just a term I had heard but didn’t really know any details about.

But after my diagnosis of pleural mesothelioma in 2012, I made the connection between that hospital renovation and the cancer found in my chest.

Didn’t Harp on Exposure or ‘Why Me?’ Mentality

After I was diagnosed, I honestly didn’t give much thought to how I developed mesothelioma.

It was probably caused by the hospital renovation, but there’s nothing I could have done to change things.

The biggest thing that hit me when I was diagnosed is how long I had this cancer in my body before someone noticed it. I had four surgeries within a 10-year period that required chest X-rays.

While X-rays are the most basic imaging scan, they may be able to detect damage or abnormalities in the body. But that is only if the doctor reading the X-ray knows what they’re looking at.

Most doctors have never seen mesothelioma before, and they aren’t trained to know how to identify it.

It’s something I now have engrained in my primary care doctor. When I’m not feeling well, he’ll do a scan and tests, but always defer to my medical oncologist in Boston if he thinks it may be related to the mesothelioma.

Don’t Avoid Diagnostic Tests

Mesothelioma is often diagnosed in the later stages because the cancer is so rare and early symptoms resemble those of a cold or the flu.

And for someone like me — who doesn’t have a long history of heavy asbestos exposure — no one knows to look for it until things get bad.

Most people don’t want to go to the doctor. They think it’s unnecessary or not affordable, or they’re simply scared of the potential results.

I never butt in where my opinion or advice isn’t warranted. But I don’t have a problem telling friends and family that if symptoms persist for more than a few days, they need to go get it checked out.

An example that comes to mind is people who need to be on an oxygen tank but refuse it. They may not feel a big difference with the oxygen on, but I explain what it’s doing for their heart and that without it, they could have a heart attack and die.

That always gets their attention.

The same thing goes for diagnostic tests. If your choice is to live and take care of things that are wrong with you, then you need to have these tests.

Better Safe Than Sorry

My mother had colon cancer. I urge all of my bothers to get colonoscopies, and I’m very careful to ensure their primary care doctors have an accurate family history of medical issues.

I tell them it’s their choice. If they choose not to get a colonoscopy and they don’t care if one day they find out they have colon cancer, that’s their choice.

It comes down to having all the information to make the best decisions for their health and well-being.

With my background as a registered nurse, family and friends often come to me for advice. Some want me to accompany them to doctor appointments.

I’m always happy to help any way I can.

A friend’s husband recently developed a respiratory issue. I told my friend she needs to tell their doctor about her husband’s work history as a mechanic for the last 40 or so years.

They didn’t find any tumors, but they still can’t pinpoint the exact problem. I told them they need to bring up the possibility of it being mesothelioma, even if it embarrasses their doctor. I said if they tell you that isn’t it, ask them to explain how they know.

It’s too bad you have to get that aggressive, but here in rural Maine — and many other places around the U.S. — that’s what you have to do for answers.

You can’t be afraid to be wrong, because it could save your life if you aren’t.

Where to Draw the Line

There is a balance between hypochondria and being proactive with your health care. There are time frames attached to any type of symptom that determine whether it is nonacute or acute.

If you do what you should do and it resolves, it’s nonacute. When it’s not what you think it is and symptoms persist, it’s acute and you need to have it checked out.

Mesothelioma is very rare. I barely knew anything about it before 2012 and certainly never thought about being one of the roughly 3,000 people diagnosed each year in the U.S.

But if you have worked around asbestos or were in a high-risk occupation like my friend’s husband, you never should rule it out as a possibility.

No one should. Because it can happen to anyone. It happened to me.

The post A Cancer Diagnosis 40 Years After a Hospital Renovation appeared first on Mesothelioma Center – Vital Services for Cancer Patients & Families.

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Announcing New Support Group for Mesothelioma Caregivers
https://www.asbestos.com/blog/2019/02/21/mesothelioma-caregiver-support-group/
Thu, 21 Feb 2019 17:33:52 +0000

https://www.asbestos.com/?post_type=blog&p=43238
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A mesothelioma diagnosis weighs heavily not only on the patient but their entire support system, too. Friends, family and caregivers supporting someone with mesothelioma also need support to provide their loved one the best care possible. That’s why The Mesothelioma Center at Asbestos.com created the Mesothelioma Family, Friends & Caregiver Support group exclusively for those…

The post Announcing New Support Group for Mesothelioma Caregivers appeared first on Mesothelioma Center – Vital Services for Cancer Patients & Families.

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A mesothelioma diagnosis weighs heavily not only on the patient but their entire support system, too. Friends, family and caregivers supporting someone with mesothelioma also need support to provide their loved one the best care possible.

That’s why The Mesothelioma Center at Asbestos.com created the Mesothelioma Family, Friends & Caregiver Support group exclusively for those caring for or supporting someone with mesothelioma.

The group will serve as a safe place to share your story, get resources and learn how others are coping with the disease. You’ll be invited to share tips, information and helpful resources. You can ask questions and get answers and support from others helping a loved one through mesothelioma.

Several mesothelioma caregiver advocates will be participating in the group including Lorraine Kember, who has written books about her journey as a mesothelioma caregiver.

Group moderators from The Mesothelioma Center, including our nurse and patient advocate Karen Selby, will contribute helpful resources and spark conversations about relevant topics.

Benefits of Joining an Online Support Group

Support groups offer empathy, emotional nurturing, experiential knowledge and resources. These benefits also help people gain a sense of agency in how they respond to things they cannot control.

Other benefits of joining an online support group include:

  • Convenience: You can access online support groups from the comfort of your home. Participants can send and receive supportive messages any time of day or night when they feel they need help.
  • Privacy: Some people may feel too shy or nervous to join an in-person support group. Online groups offer a sense of privacy when the group is closed to the general public.
  • Easy Exchange of Information: Many online support groups feature easy-to-use search tools to find resources shared among the group. Everything is electronically archived, which makes it easy to find information.
  • Supports Counseling: Online support groups can serve a supportive role to individual counseling for those who want more frequent support than counseling offers. Online groups are available 24/7 to support people in between individual counseling sessions.
  • Social Support: Receiving social support from others who understand the situation helps people feel less alone and isolated. It normalizes the struggle and helps people feel less like they’re the only one they know facing this battle.
  • A Place to Process Feelings: Talking about your feelings helps you process and manage them. This reduces stress and anxiety and improves symptoms associated with depression.
  • Skill Sharing: Members of support groups share learned skills and coping methods to help each other cope better.
  • Motivation: Staying active in an online support group motivates the participants to meet challenges with more grace and strength. Members encourage each other to keep going when the going gets tough.

Nicholas Bornman Mesothelioma caregiver

“Without a shadow of a doubt, The Mesothelioma Center Facebook group is one of the best groups I have joined…The support that the group provides is amazing; the information given is extremely scientific and objective, and all the updates from the group regarding the latest global news on mesothelioma research is very informative and uplifting! Thanks again!”

Read More Testimonials

Is This the Right Group for Me?

If you were ever a family member, friend or caregiver to someone with mesothelioma, then this group is for you.

In order to create a safe space, those interested in joining will have to answer a few questions to ensure we build the right community.

Once you’ve joined, we encourage participants to share their story. The group will be open to discussing all topics. We only ask that participants avoid hate speech and giving unsolicited advice about medical, legal and financial matters.

At this time, the group is not open to people diagnosed with mesothelioma. However, mesothelioma patients can join our Facebook community and participate in our monthly online support group.

Our Facebook community is a great place for people diagnosed with mesothelioma to share their experience and find resources and support.

If you have any questions, issues or concerns about joining these groups, send us an email.

The post Announcing New Support Group for Mesothelioma Caregivers appeared first on Mesothelioma Center – Vital Services for Cancer Patients & Families.

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Helping Mesothelioma Patients: Pen Is More Powerful than the Knife
https://www.asbestos.com/blog/2019/02/18/mesothelioma-pen-powerful-knife/
Mon, 18 Feb 2019 13:19:14 +0000

https://www.asbestos.com/?post_type=blog&p=43179
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When it comes to the future of treatment for mesothelioma, I really believe the pen can be more powerful than the knife. Politicians have the potential to save more patients than thoracic surgeons can. What do I mean? People are still being exposed to asbestos, the cause of the cancer. There still is no ban…

The post Helping Mesothelioma Patients: Pen Is More Powerful than the Knife appeared first on Mesothelioma Center – Vital Services for Cancer Patients & Families.

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When it comes to the future of treatment for mesothelioma, I really believe the pen can be more powerful than the knife.

Politicians have the potential to save more patients than thoracic surgeons can.

What do I mean? People are still being exposed to asbestos, the cause of the cancer. There still is no ban of toxic mineral.

We need a ban.

And that would take the pen. We need laws that will protect people from future exposure to asbestos. We need better policy. That will help more people than I can ever help with surgery.

Until the government signs something that says asbestos use is completely banned in the United States, you’re never going to get rid of this problem.

Mesothelioma Is Just Part of the Problem

Mesothelioma is a cancer that is completely preventable.

It was given to us by man. And it’s not just mesothelioma, either.

There are more lung cancer cases linked to asbestos exposure than total mesothelioma cases — by at least a 2-to-1 margin.

And then there are people dying from the progression of asbestosis. They are all horrible diseases.

Every time I see a mesothelioma patient, and they stare me in the eyes, looking to me to save their life, my heart breaks. I know their life could have easily been spared if they never were exposed to that stuff.

What I can do for them is just temporary.

Most people who get surgery, chemotherapy or radiation for mesothelioma are still going to die. Period.

Politicians Can Save More Lives

Politicians can help prevent mesothelioma deaths by passing tougher laws on asbestos use in the United States.

We need to prevent asbestos and asbestos-containing products from coming into the country, whether it’s in crayons, makeup or auto parts.

The politicians can save more lives than the surgeons can. But they are not stepping up to the plate like they should be.

Either they don’t know, or they don’t care.

Republicans and Democrats of the past have failed us when it comes to banning asbestos.

It could be because people already think it’s illegal, and they don’t put enough pressure on the politicians from either side.

We need to turn up the heat on all of them.

Problem Was Ignored for Too Long

Back when asbestos was being used in everything, the companies knew it was a killer, but they were going to suffer financially if they stopped using it. They did their best to stick their heads in the ground.

There is a ton of asbestos already present in all these buildings — legacy asbestos — that is exposing people such as firemen who go into burning buildings or construction workers who renovate older structures.

Not everyone is looking for asbestos, either. They aren’t trying, because if you find it, you have to pay for abatement.

A lot of it just gets swept under the rug.

Many cancers are related to public policy, related to regulation. Unfortunately, money can be put ahead of the well-being of people.

A lot of substances cause cancer, but the politics of cancer is that — if someone’s bottom line is going to be compromised — it’s best to just ignore it.

I see this line of thinking all the time.

But it’s not ignorance. People will lose money once they know they have asbestos in their building and have to abate it. Once property gets labeled as having asbestos, the value goes down.

Ban Helps Next Generation

A ban of asbestos isn’t going to stop mesothelioma by itself.

Countries with bans had to wait 30 or more years before seeing a reduced incidence rate. This is because of the long latency period of the cancer.

But a ban is better than doing nothing. And right now, we’re doing nothing.

We have to do something because the treatments we’re using now are not doing a lot to stop the problem. At least with a ban, we’re doing something that might help our children.

The asbestos out there today needs to be identified better so people know where it is.

What really breaks my heart is hearing about asbestos found in crayons or makeup for kids.

How does that happen? We’ve been recklessly exposing people to asbestos. How does that manifest itself?

Then, 20 or 30 years later, I see patients with mesothelioma who have no idea where they were exposed.

Other people know where it came from, but the innocent bystander has no clue.

A ban of asbestos isn’t the only solution, but it would be a much-needed step in the right direction.

The post Helping Mesothelioma Patients: Pen Is More Powerful than the Knife appeared first on Mesothelioma Center – Vital Services for Cancer Patients & Families.

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