Joy’s story

When Joy’s dad was told he had mesothelioma, Joy’s work experience and scientific background came to the fore. She set about understanding current mesothelioma research so she could find out how best to support him. In this interview she tells us more about their journey, how this led her to become actively involved in the mesothelioma research community as well as projects looking at asbestos public health messaging.

“When Dad received his diagnosis there was no mention of clinical trials or treatment, he was in effect told to draw up his bucket list. We were completely floored. He’d retired relatively young and was still active, travelling around doing sound and lighting for amateur productions. He really wasn’t ready to die.

As soon as we got back from that appointment, I started Googling mesothelioma. In some ways this was not a good idea, as you’re confronted with all these depressing statistics about life expectancy, however, in amongst all that we came across Mesothelioma UK.

“…listening to the speakers talking about research and clinical trials as well as having the opportunity to meet others going through the same experience was incredible.”

Their Patient Carer Day was coming up soon, so we decided to go along. The long car journey gave us time to talk about things. I was able to ask Dad about where he wanted to scatter his ashes, something I don’t think I would have been able to ask otherwise

Once we were there our mood changed completely though. Listening to the speakers talking about research and clinical trials as well as having the opportunity to meet others going through the same experience was incredible. I’ve always been interested in science, and studied biomedical science at university, but Dad’s diagnosis and the research presentations at Patient Carer Day reignited my interest.

Although by the time Dad was diagnosed it was too late for him to have active treatment, once we were home, I immersed myself in mesothelioma research. Searching for and finding out how best to support him in other ways gave me something to focus on and helped me feel I was doing the best for my Dad.

“I’ve always been interested in science, and studied biomedical science at university, but Dad’s diagnosis and the research presentations at Patient Carer Day reignited my interest.”

Raising awareness and helping people with mesothelioma take an active role in their treatment and care is so important. That is partly why, since Dad died, I’ve become more involved in research. I’ve joined the Patient and Public Involvement (PPI) group for the research team at Sheffield. I’ve also been working with numerous groups and individuals looking at wider issues surround public health messaging and raising awareness of mesothelioma the dangers of asbestos.

“[Mesothelioma has] led me to explore paths I never would have anticipated….I became involved in a charity rehoming redundant pipe organs”

This has led me to explore paths I never would have anticipated. For example, I’ve been working with a charity rehoming redundant pipe organs. Some of them contain asbestos, making this more widely known is crucial, as people refurbishing them often don’t have a clue, and can be unwittingly exposed.

I’m now also thinking about how I can make my own career more research orientated. I currently work with people who have dual sensory loss. It’s a really rewarding job, and I’m exploring ways to improve our services. As part of this I’m about to embark on some further training. Its’ given me a whole new outlook on my career – I’m not sure where it’ll take me but I’m enjoying the journey!”