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Don’t Forget to Thank Your Mesothelioma Fundraiser Support Team

“It takes a village” to pull off a successful fundraiser or educational forum benefitting the mesothelioma community at large. So many people spend countless hours collecting donations, selling tickets, printing fliers, advertising. The list goes on and on.  And it’s a list that you could not complete alone.

Volunteers are the backbone of an effective event and it is important to always recognize their contributions. These giving people who donate their time and energy never expect anything in return, but it is important to thank them. Without these individuals, you probably wouldn’t have been able to have as large on an impact on the community.

It’s not necessary to buy gifts or do anything extravagant. A simple note or card letting them know how much their help means to you can be more than enough. Write from the heart and they will feel it. Tell them what a difference they are making in the lives of so many people, and also invite them to help out with your next event!

Some people host a pizza party or ice cream social for their volunteers. This is also a nice idea. It’s a pleasant way to unwind and bond with others who hold mesothelioma fundraising close to their hearts.  It’s also a good time to reflect on what you’ve accomplished together and brainstorm for your next event!

I greatly appreciate all of the help I have received from friends, family members, and strangers who have become friends. Thank you for being so kind.  Please pray, and continue to “Believe in a cure!”

Listening Skills Are Important for Mesothelioma Patients

“What did you say?” is one of the most common phrases used today. Sometimes it is because you cannot hear someone, and sometimes it is because you are not listening to what is being said. Recently when talking with a mesothelioma patient it was apparent that she was distracted and not focused on our conversation. Clearly, she had other things going on in her head.

Mesothelioma is a life crisis, and proper communication is key to developing a care plan that is right for the patient and family. It is important for patients and their family to develop effective communication skills and to listen closely when working with the medical team. Effective listening is the primary component in effective communication.

Listening is a skill that people can work on in order to improve. It is a skill we actively use every day and we can improve on with practice. We process words at a rate of 400-500 per minute and speak at a rate of 135-175 words a minute, making listening a skill that needs concentration and practice.

[expert_info author=”Carl Rogers”]”Man’s inability to communicate is a result of his failure to listen effectively, skillfully, and with understanding to another person.” [/expert_info]

The dictionary defines the verb ‘hear’ as: to perceive by the ear, as to hear sounds, to hear voices. Listen, the verb, is defined as “to give attention with the ear, attend closely for the purpose of hearing, to pay attention, heed.” Basically, listening is the ability to interpret.

Communication involves hearing and active listening. A study that was published in 1993 by Alessandra and Hunsaker states that, on average, most people retain only 25% of what they hear. That means 75% is forgotten, distorted, or simply misunderstood.

So how do we become better listeners? Some tips frequently noted are: remove distractions; focus on what is being said; be unselfconscious, that is having the ability to stop thinking about yourself during the conversation; be empathetic or find common ground with whomever you’re talking with.

When you and your loved one are working with your mesothelioma care team, listening skills are critical to ensure all issues are addressed and care is administered properly. Listening goes both ways. If you do not feel your doctor or team has heard your concerns, make sure to state them again and again until you are comfortable you have the information needed to move on. And be patient if the doctors do the same thing to you – it is just as important that they feel heard as well.

Caregivers Should Be Cautious for Mesothelioma Patients’ Depression

The average age of a mesothelioma patient is 72 when diagnosed. Although depression is not necessarily part of the aging process or with battling cancer, it is not uncommon for mesothelioma patients to struggle with depression. It is also not uncommon for depression to be overlooked or ignored. However, it is vital for caregivers to recognize symptoms of depression and to encourage their loved ones to get help from their doctors.

John is a 74-year-old man who was diagnosed with mesothelioma in January of this year. He underwent chemotherapy pre-op, and with his supportive family with him, he underwent a partial pleurectomy in June. He did well physically with just a few complications. When he returned home he seemed to be doing well, but he was depressed.

His wife of 45 years recognized the symptoms and contacted his care team who quickly started him on an antidepressant. Although it can take up to six weeks for the medication to become effective, John responded well and was quickly feeling better and has started to enjoy life again.

What were  the symptoms that John’s wife recognized? What are the symptoms of depression? Who suffers from depression? According to the National Institute of Mental Health, the symptoms of depression are:

  • Persistent sad, anxious, or “empty” feelings;
  • Feelings of hopelessness or pessimism;
  • Feelings of guilt, worthlessness, or helplessness;
  • Irritability, restlessness;
  • Loss of interest in activities or hobbies once pleasurable, including sex;
  • Fatigue and decreased energy;
  • Difficulty concentrating, remembering details, and making decisions;
  • Insomnia, early morning wakefulness, or excessive sleeping;
  • Overeating or appetite loss;
  • Thoughts of suicide, suicide attempts;
  • Aches or pains, headaches, cramps, or digestive problems that do not ease, even with treatment.

Depression is likely caused by a combination of personal, environmental, and circumstantial factors. Cancer doesn’t directly cause depression, but one in four patients with cancer are clinically depressed.

The American Cancer Society website has a thorough explanation of cancer and depression. One point that is made is that people who have depression, along with other medical illness, tend to have more severe symptoms of both depression and their medical illness. They have more trouble adapting to their medical condition, and more medical costs than those who do not have co-existing depression.

In John’s situation, he was lucky that his wife was aware of the symptoms of depression and encouraged him to seek treatment. She knew that her husband was suffering. Depression can be treated, it is real. Help is available for both the patient and the caregivers to deal with the impact on the patient and family.

To read more about depression and cancer visit the National Institutes of Health or the American Cancer Society.

Consider reaching out to a mesothelioma support group. They are available through the Mesothelioma Applied Research Foundation.

If you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, please email me at [email protected].

Nobody Should Have to Lose Her Father to Mesothelioma

Losing a loved one hurts in any case, no matter the cause. I have found that losing my Dad to mesothelioma was a particularly tough pill to swallow. Losing him would have been the toughest pain in my life, no matter what. The fact that it was to mesothelioma made it even worse for me; being such a rare disease, it is often overlooked and forgotten about. The general population, for the most part, knows nothing about it other than the commercials that you see on television. With mesothelioma, Dad didn’t have a choice. It was there, and there was nothing he could have done about it.

Many people who are diagnosed with mesothelioma contracted the disease from serving in the military or at work, trying their best to provide for their families. Thinking that these individuals were essentially punished for that is inexcusable to me. These men and women served their country, helped others, and made a life for their families. Then, later in their lives, they come to find that their pure, good intentions have made them ill.

Other people might have gotten sick from working on a vehicle, helping a friend with home renovations, or just being in the wrong place at the wrong time. No matter what the situation, the tragic results of the use of asbestos is too much to ignore.

When I think about how Dad and others in the mesothelioma community have and continue to suffer, both physically and emotionally, it truly angers me. I wish that the dangers of asbestos would have been, and would now be, publicly known. It should be banned and outlawed throughout the world. Why expose people to this terrible material when we know better at this point? It is truly difficult for me to wrap my head around it.

Asbestos and the resulting cancer of mesothelioma have hurt enough people. Let’s work together to end this vicious cycle so that no one else has to go through the pain of this disease.

Mesothelioma Nurse Alerts Patients and Families About Issues From Cachexia

Have you ever noticed that a friend or family member will get diagnosed with mesothelioma or a different kind of cancer, and will be going along fine for a while then suddenly start to lose weight? This is actually a wasting syndrome called cachexia. Cachexia is defined by the American Cancer Society as “a profound state of general poor health and malnutrition – poor food intake – and/or poor food absorption.”

This syndrome affects more than half of all  cancer patients and kills nearly 20 percent of them before the cancer can. It is characterized by muscle wasting, weight loss and protein degradation. This syndrome is not limited to cancer; it also affects patients with chronic illness. Doctors do not know what starts the syndrome or how to reverse it, but there is promising research to bring relief to the patients.

What starts cachexia? The research is focusing on molecular causes of this disease. The hope is that this will lead to more advanced treatments. One theory is that cachexia causes white fat cells, that store calories in the body, to turn into fat-burning brown cells that release heat – thus, burning calories. Cachexia is often a sign that the chronic illness that a patient has been battling is  terminal.

Regardless of what turns the syndrome on, the effects leave the patient unable to receive additional treatment for their underlying condition. It is difficult for families and friends to see the patient exhausted and unable to enjoy the things that they used to. It affects all aspects of their lives.

As mesothelioma moves into a chronic disease, it is important to keep an eye on your loved one’s weight, and energy level. If they start losing weight, and are more tired than usual, make sure that you let the patient’s medical team know.

There were two studies published this month about cachexia – in the journal Nature and the journal Cell Metabolism. Also, a July 28 article by Yasmeen Abutaleb in the Boston Globe has an excellent explanation of the devastating physical and psychological effects cachexia has on patients and families.

Free Mesothelioma Patient & Treatment Guide

Free Mesothelioma Patient & Treatment Guide

We’d like to offer you our in-depth guide, “A Patient’s Guide to Mesothelioma,” absolutely free of charge.

It contains a wealth of information and resources to help you better understand the condition, choose (and afford) appropriate treatment, and exercise your legal right to compensation.

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