A Diary Of A Mesowarrior Living With #Mesothelioma-A very interesting week #Asbestos


gillingam

I have been in a busy whirl all week as we come to a very important week in the Nye household.

My Asbestos awareness and my political head have been working at full capacity as I campaign to have asbestos from schools as my main fight now.

My speech for Amsterdam is written and covers my story and then goes on to talk about the dangers in schools.

Asbestos & Real Estate from every angle, across borders and sectors. https://www.youtube.com/watch?v=Ftc1yBCuLsI

I look forward to meeting friends old and new and to be back in Holland where Ray has such memories of being in the Army and travelling to the Hook Of Holland everyday to collect the mail for the men to read. Those long-awaited love letters or dear johns. The food parcels sent with love from home.

ns6

Ray with his very best mate Harry who he still talks to all these years later

Also our visits to the city and the tulip fields.

I have been shopping for my outfits and evening dress we have our Euros so its just a case of packing.

I had to go to a NHS meeting which meant we went to Gillingham and as we walked through the high street a young girl asked me if she was in Ashford, she was so obviously under the influence of drugs or drink.

I told her “No dear you’re in Gillingham” she swore and staggered on, I wonder what happened to her. Just a fleeting meeting and I became involved with worrying about her ever since. So sad to see a young thing in such a state.

An article was published about my Remission that has really caused a stir and been liked and commented on by so many.

7-Year UK Mesothelioma Survivor Mavis Nye Inspires Hope

UK mesothelioma survivor Mavis Nye with her husband Ray

As part of my personal healing process, I joined a U.K. Facebook group for people who have lost loved ones to mesothelioma. Having lost my father in 1993, I still have strong emotions surrounding our loss.

What I found in this online group is nothing short of amazing. I sought comfort and support, and I met many others who experienced similar emotions. In addition to the expressions of anguish and loss, I found the promise of a new day for all families affected by mesothelioma.

I also found Mavis Nye.

She reminds me of everyone’s classic conception of a loving grandmother. Her smile is infectious and beckons one in return. The 75-year-old enjoys spending time with her husband Ray in their London home. Nye also enjoys traveling and spending time with family.

But her sweet demeanor may be a little misleading. She is, in fact, a mighty warrior.

Remaining Positive While Living with Mesothelioma

In June 2009, doctors diagnosed Nye with pleural mesothelioma. Her prognosis: Three months.

Nye didn’t crumble under devastation, cry or experience anger — as most people do when diagnosed with an incurable cancer. Instead, she took a positive approach.

“I have just got on with the fight for life. I was so determined to beat it,” Nye wrote me in an email. “I cry when I lose so many friends to the disease.”

Nye’s attitude helps her fight mesothelioma. She and her family have made it through some of the bleakest moments of her journey by remaining positive.

“Everyone said I made it so easy for them as I was always laughing,” Nye said. “Even when I had [chemotherapy] and it was so toxic, I laughed as I pushed a walking frame. I was too busy finding [clinical] trials.”

What makes Nye’s plight so remarkable is that she doesn’t only fight for her own life; she fights for the lives of all those affected by mesothelioma. She works diligently to advocate for fellow patients. Her numerous speeches, interviews and publications serve as reminders of her hard work.

Nye serves as a patient representative at the National Health Service in the U.K., and she works with Dean Fennell, a professor at Cancer Research UK. She draws on her experience of having mesothelioma and participating in clinical trials to guide professionals like Fennell find more effective treatments.

In January, Nye received the British Citizens Award for service to health care. The British Citizens Award presented the award for her selfless work advocating for fellow patients and educating the public.

She tirelessly attends conferences, gives television and radio interviews and has written several books. Nye educates others about the dangers of asbestos and paves the way to better treatment options for mesothelioma patients.

The Asbestos Disease Awareness Organization in 2013 honored her with the Alan Reinstein Award.

Mesothelioma survivor Mavis Nye accepts the ADAO’s Alan Reinstein Award in 2013.

Nye Builds Online Mesothelioma Support Network

Nye uses her website to raise awareness and provide support to those with mesothelioma.

The couple also regularly updates an extensive blog that chronicles their experiences with cancer. Ray provides a lighthearted glimpse into the daily life of a caregiver on his own site.

She also uses Facebook to warn followers of the dangers of asbestos and recent incidents of public exposure.

Positive Response to Keytruda Clinical Trial

Nye attributes her longevity to numerous chemotherapy treatments, surgery and a Keytruda clinical trial.

Immunotherapy drug Keytruda, manufactured by Merck & Co., made news in 2015 when former President Jimmy Carter credited the drug for sending his melanoma into remission.

In May 2014, Nye began receiving Keytruda injections in a U.K. clinical trial. A year and a half after initial treatment, her oncologists said Nye had no physical evidence of mesothelioma. In April 2016, her doctors reported a “complete response.”

Her experience with Keytruda is a beacon of hope for all mesothelioma patients and their families.

‘I’m Always on Tenterhooks’

Nye undergoes a scan every two months to search for any evidence of mesothelioma. She said that awaiting the results makes her feel uneasy because they have such significant implications for her.

Her anxiety is a common response.

“I’m always on tenterhooks as I have a scan every two months [because] it can hold the future in my hands. If [the cancer is] growing again, I have another battle on my hands and more traveling and more drugs to fight it with,” Nye said. “But when I get a good result, I go silent and just feel so grateful to Merck, the Royal Marsden and all the wonderful doctors.”

The Royal Marsden is a cancer center in London.

Mesothelioma communities around the world are watching Nye’s progress and her family. Her continued success with her treatment could provide a closer step toward a cure for so many others affected by the disease.

Nye’s advice to those coping with mesothelioma: “Just to never give in. I always tell mesowarriors to have chemo that knocks it back and gives you time to find trials.”

https://www.asbestos.com/blog/2016/09/15/7-year-mesothelioma-survivor-inspires-hope/?utm_source=Facebook&utm_medium=Post&utm_campaign=ThankfulTuesday

I love the why she keeps saying Nye cute

Just read this :-. Cancer changes you.
I am not the same person I was before I got diagnosed. The things I liked and thought were important before cancer aren’t now. The people I wanted to spend my time with and the things I wanted to do have drastically changed. I feel like cancer made me grow up a lot faster. I’m not as ignorant. I’m smarter, stronger, and know better. In some ways, I’m so appreciative of that. But in other ways, it’s really difficult. It seems much harder to connect with people my own age. I feel so much older than them. Like cancer shoved me forward emotionally and psychologically a few decades, but left me in my body.”it’s like I snuck out a side exit, closed the door behind me, and no one followed. At first it was almost like a breath of fresh air. Alone time. Time to process, time to think, time to pray. What’s gotten unexpectedly hard is learning to be strong on my own two feet not relying on others to hold me up. Just because the extensive expensive treatments stopped doesn’t mean all the pain and struggle did too.

Living in constant fear of “when will it come back?” without all the distraction to keep you out of your head. Knowing you’re not who you were before, but still not sure who you are now. How far out can you plan? What do you like now? What do you invest in? Where do you want to spend your time? Are you doing this right? Do you miss the old you? Do you even like the new you? Are you doing too much too soon? Moving too fast, too slow? Is this normal? The thoughts are exhausting.

ACRiley

Words that sum up how I feel I could have written that myself it’s as if she got into my head and understood me.

It has been a week of not good news for 2 Mesowarriors as they both have regrowth. I love the way they are still so positive and both seem to be getting a chance of a new trial that is coming through. Its what it is all about now. Hanging on until these new drugs are trialed. Always waiting for the funding and approval of NICE. I wish them both all the luck and my fingers are crossed.

3 Warriors are doing well on keytruda at the Marsden lots of hugs to them.

My love goes out to all the Mesowarriors who are having a rough time. The pain this disease causes I wish I could take it all away with a magic wand.

wand

 

 

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s