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I won’t let mesothelioma break my spirit

Elaine has mesothelioma and multiple sclerosis (MS). She shares how she stays positive.


I’d never heard of mesothelioma until I was diagnosed in October 2017. It came as a complete shock – the condition was flagged during a scan for pneumonia. I’m still unsure where I got it from as the main cause of mesothelioma is breathing in asbestos dust. I used to be a teacher, so it could have come from teaching in old buildings. The doctors say it’s unlikely we’ll ever know the exact cause.

My main symptoms are feeling tired and breathlessness. I also have multiple sclerosis (MS), so it can be difficult to know if it’s the mesothelioma, MS or simply old age that’s causing my fatigue! I’m a wheelchair user and try to stay as active as possible. I love swimming and find the steam room so helpful for my breathing. I also attend a weekly chair exercise class, which is just as much laughter as it is exercise!

My support network is fantastic

My late husband, Malcolm, sadly passed away in August 2016 after a brutally swift battle with lung cancer. We lived with our friend Gerry, who also has MS, and Malcolm was our primary carer. It was an incredibly difficult time, made only worse when Gerry got sepsis and was very ill. Luckily for us, 2 of our good friends have moved in permanently to help us out. They’re there to make sure we’re safe (Gerry can’t stand up anymore) and to help around the house. But they’re primarily there as our friends.

Elaine and Gerry
Elaine and her husband, Gerry

I’ve had long talks with my doctors about my condition and my future. I’ve never been one to hide my illnesses, and I firmly believe that being honest with the people around me helps take fear of the future away. In a strange coincidence, my team of doctors are the same that Malcolm had. I find it really comforting hearing them talk about Malcolm as a person, not just another patient. I even sit in the same chair that he used to.

When I was diagnosed with mesothelioma, people asked me if I had a bucket list of things that I wanted to do. I said no, because I’m very content with where I am. I’ve lived an extraordinary life and have achieved some brilliant things. I’m a competitive flower arranger and have won national competitions with my floral craft work! I think that everyone should have a goal and try to achieve it.

I'm living with, not dying from

I decided that I wanted to help raise money and awareness for mesothelioma. Through coffee mornings, flower arranging demonstrations, raffles, tombolas and more, we’ve managed to raise over £5,000 for the Mick Knighton Mesothelioma Research Fund (MKMRF), which is part of the British Lung Foundation. My friends have been amazing, and so willing to help. I know that they feel helpless at times, so being able to raise money and get involved is something they can do to make themselves feel better. We’ve got a target of £10,000, and I think we can do it!

I heard a quote that perfectly sums up how I feel about my mesothelioma diagnosis: ‘I’m living with it, not dying from it’. Worrying isn’t going to get you anywhere, and sometimes you just have to get on with things. I’ll admit that’s easier some days than others, but you have to keep on going. I hope that by sharing my experiences, I can help raise awareness and fund much-needed research into this condition.

To read more about Elaine’s story, please visit her Just Giving page.

Right now, there's no cure for this deadly disease. But you can help change this. We've spent over £8.6 million on mesothelioma research but there's still such a long way to go. Will you make a donation and help us find a cure?

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4 July 2019