In this interview Florence (pictured above, left), 32, talks about her dad’s mesothelioma and how this inspired her to raise over £4,000. She also discusses how taking part in Fitness February gave her an outlet and helped her feel like she was doing something positive. And, when her dad passed away, how the fundraising page became a way of connecting with others and sharing memories of her father.
How did your dad get diagnosed?
“My lovely dad was 65 when he was diagnosed with mesothelioma in April 2021. He’d only just retired, him and my mum had been planning their retirement for ages and had recently moved to Suffolk.
“But he’d had a persistent cough. He eventually went to the doctor. They did a few tests and that’s when they noticed that something wasn’t quite right. When he was diagnosed, I’d never even heard of it [mesothelioma]. I couldn’t even say it, and lots of people still can’t say it now – it’s a bit of a mouthful!
“Obviously one of the first things you do is Google it, and being confronted with the average life expectancy is very scary. Dad was quickly accepted onto immunotherapy. At this point it had just become available on the NHS, so we were excited. It felt like a really positive step. However, although he received it for six months, for it to continue past this point they’d have had to have seen some tumour shrinkage. Unfortunately, with Dad this wasn’t the case and they had to stop his course of treatment.
“He was offered chemotherapy, but he didn’t take that well to it. It did help in terms of shrinking the tumours, but he was completely bedridden. It got to the point where he thought if none of these things are going to cure him, he was going to prioritise quality of life.
“There was a short period after he’d stopped all treatment, he seemed a bit better, but he deteriorated quite quickly. From the point of diagnosis to when he passed away it was about 19 months. I think they did everything that they possibly could have done for him. And we will always be grateful for that.”
What are your thoughts about asbestos?
“Losing my dad when I’m still relatively young just feels so unfair. But the most frustrating thing about it all is like this could be prevented.”
“My dad worked with asbestos for a very short period of time in his early twenties. It took 45 years from that point to diagnosis. The worrying thing is that there are people that have worked in the building trade for years and years and have never heard of it [mesothelioma]. They knew that asbestos was dangerous, but I feel like it’s just not taken seriously enough. I don’t think people realise that you can actually die.
“The scariest thing is, is that this material is still out there in abundance and still some people have no idea about the dangers. We were quite horrified to learn it’s still in so many public buildings like schools and, hospitals. It just opens your eyes because you just can’t believe that this is happening and it’s going to continue to happen until preventative measures are made for the future. Losing my dad when I’m still relatively young just feels so unfair. But the most frustrating thing about it all is that this could be prevented.
“Even in people’s homes. It’s totally changed my perspective on getting renovations done. Before I never would have thought about it. Whereas now, if anyone I know is thinking about having renovations done, I tell them to make sure that they haven’t got asbestos present and if they do make sure to get a specialist in.”
How did you get involved in fundraising for us?
“…the fact that people were writing amazing messages on the fundraising page and sharing memories and stuff about dad really gave us so much comfort.”
“We cared for my dad at home until he died. It was his wish that he didn’t go into a hospice. We did our very best to try and uphold that, although I have to say it was really, really tough at times. The district nurses and hospice staff who came out to us were fantastic though. They’d come any time we needed. And actually, I felt privileged to be there in the last month of his life as a family, all of us were, and me and my sister and my mum.
“But I felt I needed to do something where I could take back a bit of control. We’d try and get some respite by going out for walks when we could each day, but we didn’t really have anything else to focus on. And that’s when I hit upon the idea of doing some fundraising. One of the first websites I’d come across when searching for information was the Mesothelioma UK website. Mum had actually ordered us Mesothelioma UK T-shirts so we could all wear and say we have someone that’s fighting it in our family. So I checked back on the website and that’s when I saw the information about the fundraising challenge Fitness February.
“I set up a fundraising page and to my amazement raised £1,000 within the first 24 hours. I was not expecting that and just kept upping the target. There were so many people that I haven’t spoken to for years, people that I went to school with. I think one of my dad’s old work colleagues also caught wind of it and people just started sharing the link and donating.
“A week into it my dad passed away. But I knew he would’ve wanted me to carry on, so we continued with it. It gave me a reason to get out of the house when some days I just wanted to stay in bed and feel sad. The fact that people were writing amazing messages on the on the fundraising page and sharing memories and stuff about dad really gave us so much comfort.
“In the end, I walked and swam over 100km throughout the month and people continued to donate. We had an influx of more donations after even the challenge had finished because of dad’s funeral and people wanting to donate after that. It’s reached over £4,000 now.
“But even if someone didn’t donate, even if they just read what I’d written and found out about what mesothelioma is, then that is still a win.
“I think it’s something we’ll continue to do every year. Hopefully it will again be an outlet for me, my family and anyone else that wants to do it for years to come.”
If you would like discuss any of the issues raised by this interview please contact your healthcare team or call our support line 0800 169 2409. Find out more about fundraising for us on our fundraising pages.
