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Guest Post – Families and Finding Support Groups

Families and Finding Support Groups

Families dealing with a debilitating disease, like a diagnosis of malignant mesothelioma cancer, often can find much-needed help with a support group.

Finding one that fits your individual needs isn’t easy, but it will be worth the time and effort it takes, providing the educational and emotional support that can be so critical to a family.

It could make a world of difference to patients and those around them.

Doctors, nurses and medical professionals may deal with disease every day – and their knowledge and experience are critical – but they don’t live with it around the clock like a patient and family do.

Talking with others who have already gone through your situation or are going through it simultaneously and can feel exactly what you are feeling is a valuable resource. They will support you.

With a rare disease like mesothelioma, it is particularly important to find a support group to avoid feeling isolated and overwhelmed. That is why The Mesothelioma Center works hard to connect patients in similar situations, allowing them to ask each other questions and share their concerns.

There is no reason to do it alone when there is help available.

Studies have shown that support groups can provide hope and help avoid the depression that can be overpowering with a poor prognosis. Just having someone to talk with, and someone who truly understands, can be invaluable.

Support Groups Can Be Cancer-Specific

There are support groups, for example, that are open to anyone with cancer. There are other support groups for specific cancers, such as breast, prostate and lung, allowing for a more specialized exchange of ideas. Other groups are designed for caregivers who need help coping with a family member’s diagnosis.

Across the Web, there are support groups that communicate via chat rooms and message boards. There also are old-fashioned conference calls. Or groups that allow for one-on-one discussions. For more common diseases, there are face-to-face meetings.

To find a support group, start with your nurse, hospital, doctor or social worker who can get you connected. Cancer centers often sponsor support groups.

There are advocacy groups like Asbestos.com that organize support groups specifically for mesothelioma patients. It is a call-in group hosted by a mental health counselor and includes participation by a registered nurse who specializes in this specific cancer. It meets monthly and includes patients, spouses and other caregivers, who share experiences, ask questions and provide answers.

Tim Povtak is a senior writer for Asbestos.com, an informational source for mesothelioma patients and their families. A veteran journalist, he joined Asbestos.com in 2011, hoping to bring awareness to this rare and aggressive cancer caused by an exposure to asbestos.

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Guest post from Heather Von St. James

Earlier this year I had a guest blog post from Heather Von St. James. You can visit her Mesothelioma Cancer Alliance Blog here.  Heather recently contacted me about a new video that she would like to share with our readers.  You can find the new video here.  I was given just 15 Months to live.  

 

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Guest Post: Finding Joy in My Mesothelioma Journey




Finding Joy in My Mesothelioma Journey



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I gave birth to my lovely daughter Lily on August 4, 2005. As a new mom, I immediately realized that I would not be able to do everything on my own. Fortunately, I had a wonderful support system that surrounded my husband, our baby girl and me. Both sides of our family were thrilled with the birth, and we also had a great network of close friends. I enjoyed pregnancy and the birth experience, and I had no idea of how my life was going to drastically change.


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After spending some time with my daughter at home after she was born, I went back to work. I started to notice that I was feeling terrible. I had no energy, it was difficult to breathe and I found it difficult to complete my daily tasks. Something told me that this was more than just fatigue from being a new mom, so I made a doctor’s appointment. After a series of tests, I received a shocking diagnosis.

On November 21, 2005, my doctor walked in the room and told me that I had malignant pleural mesothelioma. Mesothelioma is a cancer that is often caused by exposure to asbestos. Upon further investigation, I found out that I had been unknowingly exposed to asbestos at a young age. Now, 30 years later, this exposure had turned into a deadly form of cancer.

My doctor was very honest with me, and I discovered I was only expected to live 15 months without treatment. Lily was only three and a half months old, and I could not imagine her and my husband living without me. Deciding to go with a drastic treatment method was an easy decision for me because I knew I would do anything for my baby girl.

I knew I needed the best professional treatment to get better, so my husband and I went to Boston to work with a prominent mesothelioma doctor. There was no way I could take care of my baby while undergoing treatment, so I had to make a heartbreaking decision. I said goodbye to my baby, and Lily went to live temporarily with my parents in South Dakota.

On February 2, I underwent a surgery called extrapleural pneumonectomy. This is an extreme procedure that involved the removal of my left lung and additional tissue. I was in the hospital for another two and a half weeks, and eventually had rounds of both chemotherapy and radiation.

I do not think there is any way I would have survived this trial without the support of my loved ones. I will never be able to thank my parents enough for lovingly caring for Lily during my recovery. In South Dakota, other family members and friends also chipped in to watch her when my parents had to work. My husband stayed by my side and supported me every step of the way.

No one wishes for a cancer diagnosis, but hard times in life make you realize how much you have to be thankful for.

Heather Von St James is a 43-year-old wife and mother. Upon her diagnosis of mesothelioma, she vowed to be a source of hope for other patients who found themselves with the same diagnosis. Now, over 6 years later, her story has been helping people all over the globe. She continues her advocacy and awareness work by blogging, speaking and sharing her message of hope and healing with others. Check out more of her story at the Mesothelioma Cancer Alliance Blog




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