Mavis Nye Fights Mesothelioma with Laughter and Love

Mavis Nye of England shares her inspiring story of her ups and downs while fighting pleural mesothelioma. Through an email interview with MesotheliomaHelp, Mavis discussed how she takes on her cancer the same way she lives her life – with humor and through support from her family.

They say “laughter is the best medicine,” and for 72-year-old Mavis Nye that may be just the case. Mavis, of Seasalter, England, has been battling pleural mesothelioma since 2009. Although she has had her share of bad days, Mavis laughs a lot, makes fun of herself and even jokes about dying. It is this lighthearted approach to the serious, terminal cancer that has kept Mavis and her husband, Ray, enjoying their golden years.

“I have found that I have laughed a lot,” said Mavis. She believes that not only does humor help her and Ray better cope with her disease, but, she said, “I think it makes it easier for people to talk to me and not shy away not knowing what to say.”

Don’t let her humor fool you though – Mavis is a very serious and tenacious fighter when it comes to keeping herself alive and happy. She and Ray just celebrated their 53rd wedding anniversary, and she plans to celebrate many more years with the man who stole her heart when she was just 16 years old. She also wants to be there for her sons, Tony and Terry, her daughters-in-law, and her three grandchildren, who have put their lives on hold and rallied around her throughout her mesothelioma ordeal.

When Mavis was first diagnosed with mesothelioma, after experiencing difficulty breathing and numbness in her arms, she was told that she had just three months to live. Now, four and one half years later, Mavis is happy to say she has been controlling her destiny as much as the medical team that has been treating her.

Preparing for the Battle

Like a fighter heading into the ring, Mavis began preparing for the fight of her life on June 4, 2009, the day she heard the devastating news. In her June 12, 2009 blog article Mavis noted that she was already planning her fight: “I have a real battle on my hands, but with all these lovely wishes, I will fight— I promise.”

“Don’t think I’m sitting about like an invalid,” Mavis wrote in her blog just days later. She “tidied the garden and laid a little patio in a quiet place so I can sit and read when I’m on chemo.” She cleared out the shed of “stupid things we collect,” and began packing for a weekend camping event. Then, she added, “I have gone on the dog walk this week, 2 miles every day, as exercise will build the lungs — so you see I’m ready for this fight.”

Mavis needed that fighting spirit for the long road ahead. She has endured surgery, radiation, chemotherapy, a clinical trial and countless procedures and tests. And she is still looking for that silver bullet that will rid her of the cancer that has invaded her body. Mavis just completed a fourth round of chemotherapy treatment. Her doctors weren’t sure whether to proceed, but knowing Mavis’s strength and will, this summer they went ahead with six sessions.

Home Away from Home

Since Mavis’s initial treatment, a talc pleurodesis surgery where a talcum “slurry” was inserted in the pleural layers to seal the space so no further fluid could accumulate around her lungs, she and Ray have continued to do what they enjoy most – joining friends at an RV rally or kicking back for a few days of camping. After her first procedure, when she was still weak, Mavis and Ray packed up their motor home, grabbed their loyal dog Louis, and headed out for some R & R.

Since then, the two have barely missed an invitation to meet up with their friends from their “motor homer’s club.” And that time together has only strengthened the couple’s already unshakeable bond.

“Ray and I enjoy doing so much together,” said Mavis. “We are laughing all the time and enjoy camping together in the motor home. That’s when we can really relax.”

When they aren’t in their RV, the two are busy planning their next trip. Whether it is another country in Europe, a party in the next town, or a day of shopping, Mavis and Ray are buoyed by their excursions. They see each day as an adventure, and it also happens to be the best way for Mavis to cope with her mesothelioma.

“There have been some very bad days when in chemo, and the sickness and pain has been intolerable, but on those days I just lay back and rest knowing that the chemo was working on my Mr. Nasty.”

When asked what it is that gets her out of bed every morning, Mavis said simply, “I love getting up each day because it is a new start, a fresh start and I will see another day. Laughter and great friends and the love of life are what keep me going.”

Below are Mavis’ and Ray’s websites:

OneStop Mesothelioma – Contains information and resources about mesothelioma and asbestos
http://onestopmesothelioma.co.uk/index.html
Living with Mesothelioma – Mavis’s Diary
Ray’s Blog
Meso Warrior – Mavis’s book available on Amazon.com
https://www.amazon.com/Meso-Warrior-Mavis-Nye-ebook/dp/B004EHZXL6

Come back next week for Part IIof Mavis’s story – her advocacy.

Pain Medications for Mesothelioma Patients

Mesothelioma Nurse Explains Importance of Taking Prescribed Medications

Mr. W is an intelligent, 62-year-old man who recently had a pleurectomy for treatment of his malignant pleural mesothelioma. His post surgery course was smooth, with no unusual complications. He has a very supportive wife and children. He seemed to understand the importance of following the post-op instructions. He was enthusiastic about walking, understood and complied with his fluid restriction, knew his medications, and pain was not an issue.

His beta blocker, ASA, lasix, and magnesium, had all been reviewed with him, and he had taken some before his surgery and immediately after discharge from his surgery. Knowing all that, and the support he had from both his family, and his home primary care physician who had referred him to the mesothelioma center, why then, when he got home, did he stop taking all his medications?

Adherence refers to how consistently a patient takes his medication exactly as prescribed. The reasons people don’t take their medicine as prescribed are varied: the patients do not want to deal with the side effects; patients don’t feel well enough to take them; they can’t see the benefits of the medication; or the cost of medications is an issue.

Another reason may be that the patient simply forgets to take meds as prescribed. Still other patients are actually in denial believing if they take the medicines then there really is something wrong with them. Yes, your cancer is real. But taking your medicines can help you fight it.

Studies have shown that for patients with chronic conditions like high blood pressure and diabetes the non-adherence rate can be as high as 50%. Cancer has now progressed to a chronic disease, and with that distinction comes other issues.

In asking Mr. W why he stopped his meds, he did not really have an explanation. He had not discussed it with either his family or his health care team. Intellectually, he knew the reasons and importance of taking his medications, but he stopped taking them. Upon further discussion with him, though, he revealed his depression with his cancer diagnosis. He agreed to talk to his PCP and get some help.

Adherence to the treatment plan is important in the care of all patients, especially mesothelioma patients. Nurses realize that every patient is different and every circumstance might not be what it appears. Being open and honest with your health care team is vital to ensure that your mesothelioma is being treated according to your needs.

If you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, feel free to contact us.

Navy Veteran Asbestos Exposure - Mesothelioma

Don Smitley’s Love of Bluegrass Helped Him Forget About Mesothelioma

My Dad was a musician. He always said he “played at” the guitar, just chording, but wow, could he sing! Music made a huge difference in Dad’s life. It allowed him a sort of escape to a place where he could let go and be lost in the bluegrass music that he loved so much.

During Dad’s last few months, he wasn’t able to play very much as he was in and out of the hospital. The last time he went to a bluegrass event was over Labor Day weekend. He traveled by himself to meet his band mates up in the beautiful Pennsylvania mountains. I remember being so nervous about him going alone, but he assured me that he was fine. When he got home, he called and told me that he was tired, but that he had had a wonderful time. I could tell by the sound of his voice that he was beaming.

Dad and his band mates sort of became a “band of brothers,” if you will. They were very close and supported Dad throughout his battle with mesothelioma. Although his voice has been silenced here on earth, it is so wonderful to have the videos and CDs of his performances. These are things that I will treasure forever.

My father always believed in making the best of every situation, and music really helped him to do that. Singing about “Rocky Top,” which he dubbed his theme song, Gospel, or other carefree subjects, made him feel better in mind, body, and soul. I was always so proud to watch him play and sing. You could tell that he was truly happy and content, as he was with everything in his life.

If I can offer one piece of advice to those suffering with mesothelioma, it would be to do what makes you happy and try to forget about the disease. Don’t let mesothelioma take your happiness from you; let your happiness take away the mesothelioma.

Comparing Your Mesothelioma with Another Patient’s May Not be Helpful

On Black Friday a lot of people shop, but only after they study the ads and plan out carefully where they are going and what they will buy. For some, it is a fun tradition that kicks off the start of their holiday shopping. For others, it is the comparison shopping and the hunt of a bargain that drives them. Mesothelioma patients often prepare for their treatment in much the same way – studying articles, stories and their treatment options. However, many also compare their mesothelioma with other patients.

Recently, I heard two mesothelioma patients discussing their experiences. Knowing that both had different types of mesothelioma, had different therapy, and were at different stages in their journey, I was surprised at what they had taken away from their experience so far. It is understandable that people want to compare how they are progressing with someone else that also has mesothelioma, but it is important to keep in mind that everyone’s case is different.

There are many studies that support the importance of support groups in dealing with life-threatening diseases. The groups can provide a lifeline and much needed hope to the patient, family, and caregivers during this time. Many survivors of mesothelioma have had more of a positive impact on patients and families than just about anything or anyone else.

It is important to remember that mesothelioma comes in different sizes and shapes. The location of the primary site of the tumor can be pleural (lung), the most common making up around 85% of malignant mesotheliomas; peritoneal (abdomen) comprising around 5% of tumors; and pericardial and testicular, both very rare, making up the other potential cancer sites. Once the location, is identified the type is tested for either epithelial, sarcomatoid or mixed. Once identified, the disease is staged by biopsy of the surrounding lymph nodes. From there the results are compiled and the best treatment is suggested. Some possibilities include chemotherapy, surgery, radiation, complementary therapy, or alternative therapy.

Like the bargains on Black Friday, remember that your specific mesothelioma is different than someone else’s, and that different people respond differently to treatments. Just because a treatment modality did not work for someone else, doesn’t mean it won’t work for you. Be positive and trust your treatment team.

Mesothelioma is no bargain. But neither is advice that is not accurate. Take a lesson from the expert shoppers, compare and study all the facts about what you might accept as fact, and hunt for information from reliable sources.

Americans Urged to Contact Congress to Forward Mesothelioma Research

President Obama kicked off 2013 by signing into law the Recalcitrant Cancer Research Act. The legislation establishes a research framework within the National Cancer Institute to guide research efforts for recalcitrant cancers, or those with high mortality rates. Now, it is time for the NCI to develop the frameworks, and the Mesothelioma Applied Research Foundation is asking Americans to rally around U.S. Congresswomen Betty McCollum (D-MN) and Chellie Pingree (D-ME) in urging all members of Congress to push the NCI to include mesothelioma in the frameworks.

McCollum and Pingree sent a “Dear Colleague” letter to the members of the U.S. House of Representatives asking them to join them in urging Dr. Harold Varmus, Director of NCI, to guide research efforts for the rare, asbestos-caused mesothelioma.

A recalcitrant cancer is a cancer with a five-year relative survival rate below 50 percent and one that has not seen “substantial progress in the diagnosis or treatment.” Mesothelioma meets the act’s definition for both of these requirements: the cancer has just a five to ten percent five-year survival rate, and there is only one FDA-approved treatment for the cancer. There is no cure for mesothelioma.

“Congresswomen McCollum and Pingree are leading a very important effort for everyone affected by mesothelioma by encouraging the National Cancer Institute to create a scientific framework to progress mesothelioma research,” said Meso Foundation’s executive director and nurse practitioner, Mary Hesdorffer in a press release applauding the Congresswomen’s action.

The Mesothelioma Applied Research Foundation, a national organization dedicated to eradicating mesothelioma and the suffering it causes by funding the highest quality mesothelioma research, has long advocated the U.S. government for increased focus on mesothelioma research.

Take action by urging your Congress member to progress mesothelioma research. Visit the Mesothelioma Applied Research Foundation’s web site for more information.

Sources :

Mary Hesdorffer
http://blog.curemeso.org/meso-foundation-congratulates-representative-betty-mccollums-efforts-advance-mesothelioma-research
Recalcitrant Cancer Research Act
http://www.gop.gov/bill/h-r-733-recalcitrant-cancer-research-act-of-2012-as-amended

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