Wow Where has this week gone??
Everyday I have had to put appointments to speak in trying work out the journeys to the venues and booking hotels. I love it really.
But I missed out on one a couple of weeks ago so I’m paranoid that wont happen again.
September is so busy and I have so much going on. Lots of blogging material coming.
Social Media and Me
Mavis Nye – Mesothelioma Patient, Advocate, Blogger and Meso-warrior
I have always blogged about my mesothelioma journey – from initial diagnosis until today, which amounts to eight-and-a-half years. My blog helps me to reach a lot of people and tell them what it is like to live everyday with a terminal illness. Facebook also helps me to link up with others in the same boat and provided a space to share our experiences. At one point, I even created several Facebook groups with another meso-warrior.
When she passed away, I continued to work on these communities. I built them up into Facebook support groups, a dedicated webpage and a foundation. I also have a Twitter account (@grandmamavis) and a LinkedIn page. These platforms allow me to share information on my disease, treatments and trials. This collective work has resulted in a position on the steering committee for a clinical trial, an important opportunity that allows me to help guide trials from a patient perspective.
To date I haven’t found any disadvantages to using social media. It is a medium that has allowed me to reach out to thousands of people from around the world to affect change. I am very proud to share my story and my work through these social media channels, as well as on TV, radio and YouTube. I thought when I retired I might be bored occasionally; how wrong I was!
Help the mesothelioma community raise awareness on social media during Mesothelioma Awareness Day on Sept. 26, 2017. Remember to use the hashtags: #MesoAwarenessDay and #ENDMeso.
https://www.iaslc.org/membership/newsletters/iaslc-newsletter-august-2017
Then another Tradespeople need to consider lung health of loved ones”
Published: 31 August, 2017
Mavis Nye, from Seasalter, Kent, is fighting to raise awareness of mesothelioma after contracting cancer – thought to be from contact with asbestos on her husband’s work clothes.
Occupational lung diseases such as mesothelioma – caused by exposure to asbestos fibres – are increasing. Since 1992, mesothelioma deaths have increased by 70% to 1,862 and it receives far less money for research than other cancers that kill the same number of people, something that Mavis is very keen to change.
Mavis said: “I was diagnosed with mesothelioma, a cancer caused by contact with asbestos that affects the lining of the lungs, in 2009. I’ve never worked in the construction industry or on a building site, however my husband Ray did. He used to come home with his clothes covered in dust, which I used to shake clean and wash for him.
“At the time there was very little knowledge about dangers of coming into contact with asbestos, and it never crossed my mind that I would be in danger from inhaling fibres from his clothes. I think it’s important for tradespeople to realise that it’s not just their own lung health that may be at risk, but also loved ones – their partners and even children.
“Thankfully I am still here to talk about my condition, but I know I’m one of the lucky ones. I want to make sure no-one has to go through this experience in the future.”
Dr Penny Woods, Chief Executive of the British Lung Foundation (BLF), said: “Mavis’s story is truly inspiring. She is understood to be one of the few people in the world to be in recovery from mesothelioma.
“Breathing in asbestos dust can result in mesothelioma. It takes a long time to develop from the time of original exposure, so people might not experience symptoms for many years. It’s important that everyone in the construction trade is aware of the risks to their own health, and also to their friends and family.”
One way of reducing the effects that dust causes is using extractors. Festool, a supplier of high-end power tools and accessories, including a range of dust extractors, has been speaking with those affected by mesothelioma as part of its latest Breathe Easy campaign.
Jon Burcham, Marketing Manager at Festool, said: “Festool has long-been associated with our excellent dust extraction systems. We can see that dust extraction and the measures tradespeople need to take to protect their lungs is something that more and more people are talking about. But the awareness needs to go further. As Mavis’ devastating story shows, it’s not just the individuals on a site who are at risk, people in the trade need to be aware of the risks to their families and partners and take steps to protect them as well.”
http://hvpmag.co.uk/news/fullstory.php/aid/5115/_93Tradespeople_need_to_consider_lung_health_of_loved_o
Then the Contamination Expo has stepped up a notch as D Day Approaches.
Mavis Nye Foundation in association with Shield Environmental Services.
I was married in 1960 and life was very normal as we lived through our working life and bringing up our family. We got to retirement and sold our house, moved to Seasalter near Whitstable and bought a larger motorhome, which we pointed to Spain and wild camped through France into Spain, staying outside our son and daughter-in-law”s villa, much to the amusement of the local residents. After 2 months we came home and my life went into turmoil. We hadn”t realised that the dust that Ray had come home with all those years ago as he worked around asbestos as a Shipwright was going to change our plans for retirement.
Finding out you have terminal illness is a devastating blow.
Mavis Nye. BCA
Mavis Nye Foundation in association with Shield Environmental Services
I was married in 1960 and life was very normal as we lived through our working life and bringing up our family. We got to retirement and sold our house, moved to Seasalter near Whitstable and bought a larger motorhome, which we pointed to Spain and wild camped through France into Spain, staying outside our son and daughter-in-law’s villa, much to the amusement of the local residents. After 2 months we came home and my life went into turmoil. We hadn’t realised that the dust that Ray had come home with all those years ago as he worked around asbestos as a Shipwright was going to change our plans for retirement.
Finding out you have terminal illness is a devastating blow.
http://hazardousmaterialexpo.com/speakers/mavis-nye-bca/
We had to go to London Yesterday and the Railway is in a muddle with all building going on in The was no trains to London Bridge Charing Cross or Waterloo so Our Train was so packed.
We had a good Underground journey though to Euston and found the GMB Building where we were going for a Mesothelioma Alliance meeting.
This is a coming together of all the Mesothelioma Charities and Support Groups.
The Mesothelioma Alliance was established in 2017 to bring together mesothelioma stakeholders as one voice to raise awareness of mesothelioma through agreed projects.
We were trying to work out a Logo for the new group and that isn’t easy.
Lots of discussion and lots of thinking and we were saying our goodbyes as we travelled back home.
It was OK as it wasn’t quiet rush hour and the children are off school still. The Train to home from Victoria was very packed and we were standing until 2 people gave up their seat. It is so very kind and I was relieved to sit down I must admit.
So another trip under our belt. I came home and spent the evening booking hotels again as well as catching up on emails and messages and helping people with problems as just because I had a day off Meso doesn’t. People are still frightened and need advice.
I finally got to bed in the early hours. Exhausted but I didn’t sleep for long. Just when you wanted to sleep right through you never do.
So I finished catching up to-day and I know I’m straight and everything I’d back to normal-what ever normal is.
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