My husband's clothes gave me mesothelioma

Mavis was diagnosed with mesothelioma in 2009, but she’s determined not to let the condition beat her.

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I first noticed something wasn’t quite right in January 2009, when I suddenly lost all feeling in one arm. I went straight to my GP to find out what was wrong and was told it was probably just a problem with a nerve.

An X-ray was scheduled, but with a two and a half month holiday in Spain already planned and nothing too serious suspected, I decided to wait until after my break to investigate further. Not long after returning to the UK, I was walking to a polling station when I found myself getting really breathless.

I knew something definitely wasn’t right this time, and finally I got the X-ray I needed. It showed lots of fluid on my left lung that needed to be drained – 5 litres of it! Sadly, further tests revealed cancer cells in the fluid, and a biopsy confirmed my diagnosis: mesothelioma, a cancer caused by contact with asbestos that affects the lining of the lungs and currently has no cure.

I never worked with asbestos myself, but my husband did – in a shipyard, just like thousands of others in his generation. No one knew the dangers at the time, and I realised I must have been exposed by breathing in the asbestos fibres from his work clothes, which I used to shake and wash for him.

Mavis living with mesotheliomaThe next steps for me were chemotherapy and radiotherapy. At that time, I was given just three months to live. But I’ve been determined not to let this condition beat me. It’s now been four years and I’m still fighting.

I can’t do quite as much as I used to. I enjoyed swimming and walking, but the water is too cold for me now and I can’t breathe too well if it’s windy outside – but I still get out into the garden and go camping with my husband in our motorhome. Although most days I get tired quickly and have to have a sleep in the afternoon, I still manage to have an active social life.

For the past year I've been taking part in a trial for a new drug, and my tumour has shrunk so much. The doctors have decided my body is still going strong so I'm going to continue taking this new drug to see where it takes me; I hope it all shrinks away now.

I'm the only one left of three who began this trial, so the researchers are looking at my DNA to find out what gene is working to give me such encouraging results. Despite living with constant physical pain, I've been busy campaigning to make sure no one has to go through the same experience in the future.

I also share my story on my own blog to help raise awareness of life with mesothelioma and to reach out to others with the condition.

Treatment for mesothelioma is limited and I've been very lucky to survive this long, as sadly fewer than 1 in 10 people diagnosed will survive for as long as 5 years.

It’s often diagnosed when people are at an advanced age and many people have other health issues to deal with too.

Research into mesothelioma receives less funding than other cancers which kill similar numbers of people, and that's something I want to change.

Raising the profile of mesothelioma is really important to me; I want more people to know what it is and the impact it has on so many lives like mine. Action Mesothelioma Day is a great opportunity to talk about this. We will find a cure for this deadly disease. But we can't make it happen without more funding for research and support for mesothelioma.

This Action Mesothelioma Day, please consider making a donation to the BLF and help us get one step closer to the end of this asbestos-related cancer.


Comments

I was diagnosed in Jan.2014mat the age of 65 .I have never known a feeling like it,to be told no cure it rips you apart.Mavis was there from the begining for me.She has advised me on things been there on my off days and she is always fighting our corner even on her off days.I have said for some time she deserves a medal.God Bledd you Mavis and thank you fromthe bottom of the Beal families heartxx
Mavis is a remarkable lady. My husband has mesothelioma and my father died of it I know now but did not know when he died. I live in Waltham, Ma, USA and Mavis touches us from the other side of the ocean with her gratefulness, enthusiasm to find a cure for this deadly disease, clinical trials and just being there with her daily blog. She is an inspiration and power of example to me as I continue to care for my husband and my disease of myositis.
I call Mavis, My Queen, and Ray, Prince Ray. They are very special people in my life, as they are in many other peoples lives. They both go back 5.5 years in my 7 year journey and fight against asbestos. I can recall a hand full of things about our journey Mavis would cringe if I told, but I can recall a far greater amount she would want me to tell. She is feisty, she is wicked, she is straight, loyal and true. Mavis is a listener, she is a student, she is a teacher, she is a giver. What sets Mavis apart, is the fact, I truly believe what Mavis does, she does to facilitate change and knowledge for the common good, it is not about Mavis, but what she can help achieve. We may live on opposite sides of the world, but we have a bond that is unshakeable, I am proud to call Mavis and Ray true friends. Long live Queen Mavis and Prince Ray, the world needs them! Rod Smith Operations Manager and Support Co-ordinator Bernie Banton Foundation Australia
just read this amazing ladies story from a friends Facebook link. What a warrior you are , I sincerely hope this trial continues to shrink your tumour and you enjoy many more motor home holidays and summers in your garden.
Mavis has been a inspiration to us all always sounds cheerfull but we dont know what she mite be keeping to herself im full of admaration for mavis
I think mavis is wonderfull we ma never know the full extent of any pain she may have becouse she is such a happy joviul person
Mavis Nye has been a fantastic ambassador for Mesothelioma. Her tireless work for all of us her determination and fantastic careing Mesothelima Warriors website has made life so much easier to deal with my husbands Mesothelioma.
I nursed my husband through the worst disease ever. MESOTHELIOMA. Diagnosed 28th March 2009. It was a very painful journey for 3yrs.39days and He died May 5th 2012. The worst day of my life. I asked to be tested in case I got it off my husband's clothing when shaking his clothes ready for washing. I was clear. But I still wonder as it takes between 40-60yrs for the tumour to develop. My husband was spot on for 40yrs. A young man in his 20's going to work as a carpenter and cutting asbestos on a band saw. He had no chance of survival. A horrendous cancer journey. Painful to look into the face of the one you love and don't know what to say. Crying inside whilst watching him slowly die in front of you. He was so sad. He retreated into a shell and died quietly with dignity. He couldn't fight this losing battle. I still feel sad and miss him.
Please, Can you explain what drug Marvis was on in the trial? 

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23 June 2015