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Flexibility Plays an Important Role in the Mesothelioma Journey

The quality of flexibility is best described as the ability to bend without breaking.  Facing challenges either physical or mental throughout life and the ability to adapt to the unexpected requires flexibility. 

Everyone’s journey in life and facing death is different.  Guiding these uncharted experiences can be very difficult for both the person facing their mortality  and the family and loved ones trying to help. 

When facing end-of-life patients and families often have different perspectives. The perspectives that they have at the beginning of the journey often change as the journey continues.

Recently a patient was facing the end of his life.  He had battled his disease for several years and was ready to stop.  His family was supportive of his decision and wanted to follow his wishes. The plan was hospice at home with family members taking turns caring for them.  The family was able to see that his wishes were honored but it required flexibility. This sounds logical but when emotions and relationships are involved it is not always easy to navigate.

People plan and expect things to go by plan. Everybody has their own scenarios and plans about what they would like their death to look like. Sometimes these plans need to be adjusted. Like birth when the expectant parents have the birthing plan in place, every scenario is planned for.  The unexpected happens and the plan needs to be adjusted.  Flexibility plays an important part in that.

Malignant mesothelioma is a disease that challenges people every day beginning at diagnosis. It is a rare disease that charts its course from individual to individual. 

When facing the end of life for any disease the plan may have to be adjusted.  Any disease or end-of-life issue is never neatly packaged and there are no instructions on how to respond and which way to handle decisions and circumstances that are out of their control.

Remain flexible and adjust your expectations throughout your journey.  Treasure every moment of this life. Planning is important but the ability to be flexible and adjust to life-ending moments as we respect the wishes of our loved ones is a success. Although the outcome may not be what you were hoping for and the timing may not be long enough, facing our mortality and those of our loved ones is an important part of life.

A Necessary Discussion: End-of-Life Options for Mesothelioma Patients

The COVID-19 pandemic has been a frightening time for all of us. The uncertain nature of the disease and number of people affected brings the importance of what we want at the end of our lives to the forefront. With hospitals and skilled nursing facilities limiting visitors and the inability of some to travel, it is necessary to discuss what we wish to happen at the end of life with our loved ones.

We all know that when one person within our family or group of friends gets diagnosed with a severe illness like malignant mesothelioma, it affects all of us. Uncomfortable conversations need to be had. However, navigating these complex and potentially life-altering conversations can be done in a reflective, thoughtful way. 

As nurses, we have long heard our peers state that they would never have chosen the treatment that a particular patient went with, only to confront a health challenge themselves and choose the same treatment option. 

Our relationships are the most important connections that we have. What we value and who we love are all individual decisions. Once we self-reflect on what we value and how we would like to live our final days, we need to let others know. To ensure your wishes are carried out, they must be shared with those who care about us: a spouse, partners, friends, and so on. Your medical team needs to know your desires, but more important than anything is that you and your loved ones know them.

Having essential conversations regarding our end-of-life wishes should be done by all of us, ideally before a health crisis. But unfortunately, it is easy to put off these conversations. 

There is guidance and help on where to start thinking and planning about our wishes. Ellen Goodman, one of the co-founders of the Conversation Project, sums up their goal:  “Conversations about what matters to you, not what is the matter with you.”

There are workbooks to help clarify your values and wishes. What do you value? Do you want to be home when you die? With who will you share your wishes? 

In this complex world, sometimes we need to get back to basics and accept that we all are mortal. Talking and planning will not hasten our end of life but enable some peace when it does come. Ensuring that what you as an individual value and the decisions you want are honored can offer some peace of mind for both you and your loved ones.

Mesothelioma Community Recognizes November as National Family Caregivers Month

November is recognized as National Family Caregivers Month. First recognized in November 2013, by President Obama, the purpose of this month is to raise awareness for family  caregivers and to improve their overall lives and well being. 

Over the course of life, chances are that we all will be caregivers at some point for a parent, sibling, loved one, partner, neighbor, or friend. It is not something that we plan on or prepare for, it usually just happens.

Family caregivers come in all ages, sexes, shapes. They are as varied as all of us. Each one does what works for their particular circumstance. They provide care for loved ones, friends, and partners across the whole spectrum of caregiving. They take physical care, psychological care, and coordinate care for someone else. They do tasks like taking someone to the grocery store, to doctors appointments, or simply spending time with them. 

If there is an “average” age of caregivers it is 47-54 – employed women. Providing care to the elderly, the average age of the caregiver is 62. And minority caregivers provide more care than their white counterparts. The length of time in the caregiving role can be less than a year to more than 40 years. Family caregivers are unpaid, and often unrecognized.

This is a very stressful job that can impact the caregivers’ health. Although there are definite positive benefits of caregiving, for the caregiver there also can be negative implications. 

Since the pandemic it seems more important than ever that we take care of each other. All of us have seen what isolation can do to our collective mental health. For many family caregivers that is their reality for long stretches of time. 

Shining a light on a problem or situation is important. More important is how can we help? Look around, you probably know someone who is providing care for someone else. Help them accept help. A phone call, a visit acknowledging what they are doing, staying with the person while they go for a walk, small things can mean so much.

Caregivers are giving to others, and you can help by giving to them. Accepting help is difficult for some people but it can provide relief for the caregiver who is already giving so much!

Unique Perspective: Mesothelioma Patients Can Set Personal Goals

Being diagnosed with malignant mesothelioma is life changing and patients handle this differently. Every person is unique in their response to this news, but how we respond to a serious life altering diagnosis is our own. There is no right or wrong way, as we must allow ourselves or our family members to feel their fear, or anger, or whatever emotion they may be feeling.

Often we hear people apologizing for their reactions or their families actions. The realization that you or a loved one is facing a life changing diagnosis is different from any other challenge you may have faced over your lifetime. Often we see fear, anger, and denial that are expressed in many different ways. The person that receives the diagnosis and their friends and families can become overwhelmed by waves of different emotions.

Recently when visiting a patient recovering from a pleurectomy, he explained that his goals were to get back to being an active person. He was elderly, had surgery, and was home recovering. He had a smooth course as far as complications go. What was bothering him the most was how long it was taking to recover.

He wanted to get back to his previous level of activity as soon as possible. He was an active hiker, skier, cyclist, and walker. His house was surrounded by woods and he was determined to get back to his trails. He explained that when he was outside with nature it gave him a calm feeling, and that is why he loves nature and wants those feelings to come back. 

When reminded that he was only three weeks post operation and he was doing very well, he listened politely. He is determined to get back in the woods and go hiking. He has made that his goal. He knows his health has changed and he has a serious illness but he is coping in his own way. If he can ever get back into the woods remains to be seen.

Change can be hard. Changing our outlook can be overwhelming. What is important in one person’s life may not be important in another’s. The thoughts of hiking in familiar woods after major surgery might not be anyone else’s goal. Respecting every person’s individuality and way they cope is essential to everyone who is involved in the care of or is helping a loved one facing malignant mesothelioma

If you are part of the support team, or are the patient yourself, respect the feelings and emotions that go along with this journey and know nothing stays the same. Every day is a new beginning and that is all we really have. If you are struggling, get involved with a support group or call your mesothelioma team. We are here for you if you need a listening ear or help with resources. You are not alone.

November is National Family Caregivers Month

October was Health Literacy Month and November is National Family Caregivers Month. Both of these special months highlight the importance of education, support, and understanding when dealing with or caring for a loved one. When faced with a diagnosis of malignant mesothelioma, understanding of the disease and what to look for helps both the patient and the caregiver.

The definition of health literacy from the Affordable Care Act of 2010 is “the degree to which an individual has the capacity to obtain, communicate, process, and understand basic health information and services to make health decisions.”

There is nothing simple about understanding the disease of malignant mesothelioma. From diagnosis through treatment the terminology and descriptions of the disease are difficult to understand and to even pronounce. The process of being diagnosed is usually after weeks or months of tests and scans, and after other common illnesses are ruled out. Health literacy can become an issue immediately.

A “family caregiver” is considered anyone who does not get paid but helps another person do what they can no longer do without assistance. Family caregivers provide extensive assistance which can include medications, shopping, preparing meals, cleaning, advocating, coordinating, educating – the list is very long, and the contributions vital.

For a rare serious disease like malignant mesothelioma, it is important for patients and families to understand what they are dealing with. The options for treatment can be confusing and the plan can change with further testing. The importance of being able to understand and trust your team is vital. Family caregivers are the link between the patient and their medical team. Having someone with you during this journey can be life saving. In order to give the patient the best possible chance for recovery and quality time, the family caregiver’s contribution and understanding of the disease and the patient is very important and often both overlooked and under appreciated.

Looking around, the number of people who in addition to maintaining their jobs and lives also provide care for someone else is staggering. The term “invisible army” has been given to these caregivers who often are not recognized.

We honor and thank all the family caregivers for their huge contribution to ongoing care for another person, family or not!

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