Mesothelioma Patient Beyond Comfort Zone

Meet Miss March (and May) of the Mesothelioma Warriors Calendar

In December, we brought you information about the group of UK women who created the Mesowarriors calendar to raise money for the June Hancock Mesothelioma Research Fund. This month we highlight the March mesothelioma advocate: Angela Caulfield of Cumbria, England.

Why did you do this calendar?

My wonderful, beautiful daddy fell asleep in 9th May 2011, 4 1/2 years after diagnosis of mesothelioma. My dad was a true family gentlemen, he worked hard all his life to give my mum and my siblings the best upbringing any child could ever want. My dad has always been my rock, no matter how, he was always there, he loved all his grandchildren and mesothelioma stole the earth’s most genuine, most funny, most caring and most loving dad any child could ever be blessed to have. My dad never smoked, he wasn’t a big drinker, he went to the gym, he always ate healthy, well unless he got caught – lol. The rollercoaster of emotions everyone goes through is horrible.

Was there a point where you wanted to back out from doing the calendar for fear or nervousness?

Ha! No, I didn’t want to back out for one minute! I enjoyed every single second of sharing and doing this, with some meso warriors I haven’t even met. It was quite stressful at one point, but the laughs we had and the wait of people uploading their photos was so funny. I loved every minute of it!

What does the June Hancock Mesothelioma Research Fund mean to you?

I had heard of the June Hancock charity, but have not used their services. But I believe it has helped so many meso sufferers. There has to be more successful research to find a cure for mesothelioma, more awareness to stop people contracting mesothelioma and also removal of all asbestos from schools/buildings etc should be made compulsory.

What message would you give to patients and families who are battling mesothelioma?

Reach out. If it wasn’t for the impact of the mesothelioma warriors, many of us have walked alongside each other for years, through good and bad, without this bond, without each other, I don’t personally think anyone who is associated with warriors would have gotten, or could still get through the journey with mesothelioma, as we have. We lean on each other for support, we have each other for laughs, this group can never be replaced, never be bought and can’t just be joined, it’s a group of unity and thank God we have all got each other.

About The June Hancock Mesothelioma Research Fund

The June Hancock Mesothelioma Research Fund of Sheffield, England, was established in 1997 for June Hancock and her mother who lost their lives to mesothelioma. The funds raised by the June Hancock Mesothelioma Research Fund go toward sponsoring vital epidemiological research into the causes of mesothelioma, raising awareness of the disease amongst healthcare professionals and the public at large, and to provide good quality up to date information and advice for mesothelioma sufferers and their carers, according to the organization’s website.

Know more about Mesothelioma and how you can deal with it.

Hospice Care Goes Beyond The Mesothelioma Patient

I have written several times about the benefits of hospice for mesothelioma patients and their families. However, it wasn’t until December that I found out first hand just how vital a hospice organization can be when the end of life draws near. My mother-in-law reached out to hospice as my father-in-law became debilitated with pancreatic cancer, and we found that hospice care extends beyond the patient.

Just as with my father-in-law, when a mesothelioma patient no longer responds to a prescribed treatment plan, and the primary caregiver needs support caring for their loved one, turning to a hospice program is one option to explore. One critical point to note is that hospice is not just for the patient – the support is for the entire family.

Mesothelioma is a terminal cancer that may not develop for decades after initial exposure to asbestos. However, once symptoms become apparent, mesothelioma may rapidly progress to cause life-threatening complications. Once a hospice nurse is with the patient, he will be carefully monitored and kept as comfortable as possible while managing the symptoms the mesothelioma patient is experiencing. The caregiver will also feel comforted knowing a care team is by the phone for them 24/7.

Hospice is not a “place” rather it is a concept of care. According to the Hospice Foundation of America, hospice is designed to improve the quality of a patient’s last days by offering comfort and dignity. In addition, hospice care neither prolongs life nor hastens death. However, it does allow for patients to remain in their own home surrounded by their loved ones.

As soon as hospice is in place, a personalized plan is established and a team of professionals including nurses, chaplains, nursing assistants, social workers and bereavement counselors will be assigned. And they do not waste any time becoming part of your family and ensuring everyone’s needs are addressed. Of course, the patient is first and foremost and the care team will provide care for symptoms such as pain, nausea, vomiting, shortness of breath and restlessness; medication management; and personal care including bathing and light housekeeping. They may also provide a hospital bed and any other items needed for comfort and medical support.

The team offers a partnership in caring for your loved one. Not only do they provide the medical support needed, but they also help the caregiver by providing a thorough explanation of what is going on and what to expect, a friendly person to talk to, and they will sit with the patient so the caregiver can go out for groceries, lunch or to run other errands that get ignored while providing 24-hour care. The hospice also offers chaplain services and spiritual care.

The National Hospice and Palliative Care Organization estimates that there are over 5,500 hospice programs in the United States caring for nearly 1.5 million patients each year. Sixty-six percent of the hospice care is provided in the patient’s home, family member’s home or in nursing homes. The median length of time for hospice care is less than 19 days.

Hospice care doesn’t end when the patient passes away. The hospice team will help with contacting appropriate parties, arranging funeral services, and conducting the service if requested. Although no one wants to think of the end of life, the multi-disciplinary hospice team can help ease the burden and help you in the difficult transition.

Attention Caregivers! Please Participate in Our Survey

Mesothelioma patients have a long journey that includes doctors’ appointments, countless prescriptions, and extensive treatments such as chemotherapy and radiation, among others. Caregivers are the silent hero of the day-to-day living needs and managing the illness.

“I have come to terms that it’s my place to do any extra work involved in caring. I don’t think about it anymore, it is just natural,” says Ray Nye, a caregiver for his wife, Mavis, who was diagnosed with mesothelioma.

To more fully understand the struggles and triumphs of caregiving, author of Things I Wish I’d Known, Debbie Cornwall, is collaborating with MesotheliomaHelp.org to get answers for current caregivers on job duties, emotional status, and more. If you are a caregiver, please take the time to answer a quick study on your cancer caregiving challenges.

A caregiver is defined as one who assists another person who is ill, disabled, or often needs help with daily activities, but a caregiver is so much more than that.

Common duties for a caregiver can include:

Providing companionship and conversation
Providing stabilization and assistance with walking
Preparing meals and cleaning up meal-related items
Providing medication reminders and appointment reminders
Personal Care services are personal in nature and often include assistance with activities of daily living

Caregivers spend an average of 20 hours per week caring for their loved ones, according to a 2009 National Alliance for Caregiving study in collaboration with AARP.

A Pew survey found that between 2010 and 2013, caregivers increased 10 percent, making it 4 in 10 U.S. adults caring for a sick or elderly family member. Caregiving is an emotional and physical job that isn’t easy, that’s why they should also have time to take care of themselves too. Caregivers are the backbone of care. They often fill prescriptions, go on walks with patients, plan and prepare meals, do light housekeeping, and other activities.

Know more about Mesothelioma and how you can deal with it.

Write It Out for Strength and Hope

By C. Hope Clark

In my profession as a writing counselor and an author, hardly a day goes by that someone doesn’t email, Facebook or Tweet me about how illness has incapacitated them to the point they have no will to write. Likewise, caregivers, their days packed with the needs of others, tell me the same. To them, life has sucked all the joy out of storytelling because their energies are spent elsewhere, amongst the myriad of obstacles to simply living. In each and every case, I beg them to rethink their choice.

Burdened with severe rheumatoid arthritis since his twenties, my uncle lived to age 80, crippled and in pain most of his days. Yet he wrote the most beautiful letters to my mother, his sister. He allowed people to glimpse into his soul through words. He held a romantic view of life, appreciating the intricacies and simplicities of his world. I never felt his pain, and there is no doubt in my mind that his writing helped him forget his.

That’s only one of the many reasons we need to write through the irritation, struggle, and challenges laid before us. Writing can be cathartic and empowering, enabling us to:

Vent
What you’re thinking may not be what you want to tell the people around you. But it’s freeing to express your worries in words. I once read a child’s story where the fretting little boy was taught to write his anger out on paper, read it aloud, and then throw it away. It’s like writing an angry letter to the editor, sleeping on it, then rereading it in the morning. Such a release. Such a tool to help us anchor ourselves.
Slow down and think
When we document our days in journals, stories or poetry, even scripts, we have to slow our thought processes down and sift. Converting our moments into scenes and phrases allows us to look back and study how we handled moments, news, even treatments. Writing our story can make us step back and regroup, defining what is important and what is not.
Preserve history
The universe moves forward whether we record it or not, but there’s something special about expressing our interpretation of it. Even with electronic media and an overabundance of information, our memoirs are worth gold to our friends and family. Maybe not today. Maybe not tomorrow. But eventually they’ll marvel at your voice. And you’ll be able to look back and see how far you’ve come, writing through days and current events that turned out to be so much bigger than what we thought, more meaningful than just us.
Document medical issues
Whether you wish to express displeasure, weave a beautiful poem, or simply journal facts, writing about an illness, yours or others, allows you to record yourself in the moment. This spontaneous documentation just might enlighten others about symptoms, reactions, and treatments.
Communicate with each other
What we may not be able to say face-to-face might be expressed in writing. A diary, a thank-you note, or a parallel short story to what we experience might enable others to walk in our shoes. Your story might be what assists another to endure a similar period in their life. Your sentences might help others realize they aren’t alone.

Whether you blog, write letters, create a story for Chicken Soup books, YouTube or publish a book, your experience is recordable, and a tool.

Expert Insight

C. Hope Clark

“Writing can liberate you, pick you up and carry you through ordeals. It can help you preserve and appreciate your journey. And it can help others.”

Share on Facebook

So when you think your care-needing or caregiving has sapped the strength out of you to write, take a pause. In actuality, writing may just be the medicine you need.

Know more about mesothelioma and how you can deal with it.

Father/Daughter Forge Strong Bond Over Mesothelioma Care

When Amanda headed off to college she knew she wanted to dedicate her career to helping children learn to read. Since completing her Master’s in Education, she has gotten satisfaction from watching the children in her classes slowly begin to enjoy reading and to gain confidence in themselves.

It is with this same nurturing and caring spirit that led Amanda to stay by her father’s side as he fights pleural mesothelioma. Although helping him battle cancer was not new, her father successfully fought melanoma nearly eight years ago, Amanda knew that fighting mesothelioma would be particularly challenging.

Her father chose to have his treatment under the care of mesothelioma specialists at the University of Pennsylvania Hospital at Penn Presbyterian Medical Center. The choice was not easy – he would have to leave his wife and sons behind. But with Amanda living in the Philadelphia area, there was no question that he would receive the love and care from her that would help him overcome even the most difficult treatments.

Amanda’s father had to remain in the hospital for six weeks, and she took the time to see him every day. During this time Amanda learned as much as she could about mesothelioma and worked closely with the medical team to ensure her father received the appropriate mesothelioma care. Her father learned that it is okay to lean on Amanda and to trust in her decisions. And through it all they created a bond that brought them closer than they had ever been.

Amanda will tell the story of how her father successfully battled one cancer to only be stricken with mesothelioma years later. She will provide readers information about how the diagnosis, treatment and management of mesothelioma affects an entire family, but through love and strength fighting the disease is a little easier.

Please join us in welcoming Amanda to MesotheliomaHelp.org as she offers articles about helping a family member battle and cope with mesothelioma, and how the disease can help bring a family together.

Category: For Your Family