A social worker, with no known asbestos exposure, Tony was only 60 when he was diagnosed with pleural mesothelioma. Fit and active, walking his labradors miles every day, his diagnosis took him and his family by complete surprise. He died 4.5 years later.
A year after he passed away, we spoke to his wife Barbara and daughter Niamh. They want to raise awareness of mesothelioma, especially where they live in Northern Ireland, where access to specialist services can be difficult.
They also want to share Tony’s determination not to let mesothelioma take over his life, as a way of giving some positivity to others affected by this disease.
How did Tony get diagnosed?
Barbara: “Tony took early retirement at 58. He wasn’t quite a year into retirement when he took unwell. He was a very fit man. He trained dogs and walked Labradors everyday all his life. That was his hobby, but he had been a social worker, working with families and children.
“The way he told me he was unwell was one day he just said, “I’m not fit”. He was finding it harder each day getting up the hills with his dogs. And I thought, that can’t be right. He did everything in moderation, he didn’t drink, didn’t smoke.”
“People ask what he had and often look a bit bemused when you say ‘mesothelioma’ and you nearly end up saying, oh, it was just a rare cancer, and it’s not just a rare cancer, it’s a rare cancer that nobody ever needs to get.”
Niamh: “So when he was diagnosed it was a massive shock. The fact that it was anything to do with his lungs just seemed a bit crazy to be honest.”
Barbara: “When we went to the GP he thought it was perhaps his heart, but then he had a chest x-ray and he phoned me and said, “Its not my heart it’s my lungs.” He then had to go back and get a CT scan and that was the ball rolling from there.
“We’d never heard the word mesothelioma before – I couldn’t even pronounce it. I didn’t know what it was. Yes, I had heard about asbestos, but knew nothing about it. It was a big shock.”
Niamh: “People ask what he had and often look a bit bemused when you say ‘mesothelioma’ and you nearly end up saying, oh, it was just a rare cancer, and it’s not just a rare cancer, it’s a rare cancer that nobody ever needs to get.”
Did Tony know how he might have been exposed to asbestos?
Barbara: “We don’t know for sure. There was no obvious exposure. We were told that it could lay dormant for many years, so maybe he got exposed when he was younger, but we just don’t know.”
Niamh: “We tried a little bit to look into it and see if there was any way we could trace where he was exposed, and Dad did fill some details, but to be honest he was never interested in finding out, and part of me wonders if he never really wanted us to know in case we went on a war path looking for things!”
“There’s just so much negativity with mesothelioma, there really is, but people are living with cancer, it doesn’t have to be all so negative because it’s not. We had some really, really lovely times despite Daddy having mesothelioma, life was still able to continue.”
What treatment did Tony have?
Niamh: “May 2017 was when he saw the GP May 2017, he then had fluid removed in June, and by July he had the diagnosis and then he had big surgery in the August of that year.”
Barbara: “After his surgery, Tony finished chemo in Christmas 2017. He then had three monthly follow-ups and had those for about a year and a half up until Easter 2019 when he was told that there had been some disease progression. The consultant said he didn’t recommend any more chemo, but advised a clinical trial, the Confirm trial, which was running in Belfast. Tony was fortunate enough to get on to it and started that September. He stayed on it for almost the whole year, but when he went for his last treatment, we were told the disease was on the move again, and there was no point having the last treatment. It was such a shock, he looked so well.”
Niamh: “Treatment options [for mesothelioma] are very limited. But when Mummy says Daddy was so well, he was well. So we thought there must be something more we can do – this big strong man, this can’t be it. So we did a lot of research online, and in the end we pushed a little bit to have the trial unblinded. We found that actually Dad had been in the placebo group. That was a bit of a kick in the guts at the time, we felt that he had lost a year.”
Barbara: “So for all that time, Tony didn’t have any treatment – and was doing really well.”
Niamh: “After this we pushed again to get funding here in Northern Ireland for Nivolumab [the drug that Tony would have received in the trail if not in the placebo group]. We knew that there were people in Northern Ireland who had received Nivolumab for other types of cancer so that was a little bit of hope, and we hoped getting him that drug that might give us some time. That was a big win, getting that drug.”
Barbara: “But he did have side-effects with it.”
Niamh “Yes, he was in hospital for a few weeks, on IV antibiotics. He was let home, but then was told at that point the Nivolumab had to stop.”
How did living with mesothelioma affect you all?
Niamh: “From May 2017 everything changed, everything was different in our house, in our family. Things were not OK anymore. It’s just the life expectancy is so terrible, that being hit with a diagnosis, it just is life changing in the most terrible way.
“We did have a couple of years where things were normal – kind of. But we still had all that worry from scan to scan.”
Barbara: “But Tony didn’t like to talk about it. The only time I would get him to talk would be after we’d had the hospital visit and the results of the scan and they would say to us it was stable. And you could literally just see the relief in him. Sometimes I felt there was too much negativity. We were told on the one hand that there had been no progression, but there was always a but – that we don’t know what it’s doing underneath. There was always that little bit of negativity.
“He would joke about his cancer with us, that was his way of coping. He never gave up and he didn’t to the very, very last day. He was still up and about trying.”
Niamh: “There’s just so much negativity with mesothelioma, there really is, but people are living with cancer, it doesn’t have to be all so negative because it’s not. We had some really, really lovely times despite Daddy having mesothelioma, life was still able to continue, because he made it that way, and we made it that way as well, because that’s what he wanted.”
“We’ve have got to keep on pounding, pounding, just to remind people about the risks and dangers of it. For something that should not have happened its terrible that it is still there and they are not doing something about it.”
What do you want to achieve for Northern Ireland?
Niamh: “We started almost immediately after Daddy died, within the first few days, it was something to focus on really, so we reached out to Mesothelioma UK and said we want to try and raise awareness here in Northern Ireland and try and improve the support and facilities here.” (Read about the Mesothelioma UK Northern Ireland Project here).
Barbara: “And maybe have a specialist nurse that dealt with mesothelioma or a consultant. We were treated under the lung cancer area, and I used to think it’s not lung cancer, is there not a specialist mesothelioma area? Which there wasn’t [where they live].”
Niamh: “Just to have that special person [CNS], for support and to engage with, would be invaluable. And that’s what’s so special for us and Daddy to know that something really good is going to come out of something not very nice. But it will always be something lasting and it will always be Daddy’s name that will be involved.”
What do you think needs to be done about asbestos?
Barbara: “I didn’t know until after he had died that it was an unnatural death [mesothelioma is defined as an unnatural death as almost always due to asbestos exposure] and that it shouldn’t have happened. Then I started to read about it and that got me really cross. He didn’t die a natural death, and so I really felt that we had to do something to raise awareness of mesothelioma, to let people know how serious it is.
“We’ve have got to keep on pounding, pounding, just to remind people about the risks and dangers of it. For something that should not have happened its terrible that it is still there and they are not doing something about it.
“We don’t know how much exposure it takes for someone to be affected by it, it could be a little bit, it could be more. We also don’t know why Tony got it and whoever else was with him didn’t. Politicians should be campaigning to get rid of it out of all the buildings.”
Niamh: “I think that obviously that’s the main goal, for us, for Mesothelioma UK, for anybody who have been affected, is to get rid of all asbestos.”