Helen’s story
Helen turned 40 last year. She’s married to Mark and between them they have three daughters aged between 10, 14 and 17. She qualified as a nurse in 2004 before becoming an Advanced Clinical Practitioner (ACP). Her career has involved both intensive care and respiratory work. When Covid hit she was on the front line working with critically ill patients.
It was after she fell ill with Covid herself that she noticed a cough and chest pain she couldn’t quite shake, it was this that eventually led her to become diagnosed with mesothelioma in 2021.
In this interview she talks about living with mesothelioma, and what it is like as a younger person to be diagnosed with a disease predominantly seen in the over 75s, as well as her thoughts about the current policy on asbestos management.
Helen spoke to us to support our Don’t Let the Dust Settle campaign running throughout April 2023.
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How did you get diagnosed?
“At the end of April 2020, I got Covid. It left me with this residual chest pain that I couldn’t quite shake. I went to the doctors, but because there were no other specific symptoms, there was no reason to think it was anything other than the after effects of Covid.”
“A pleural effusion in a woman of my age who is normally fit and well is strange. From my experience I knew what pleural effusion can be caused by mesothelioma, so my mind was churning over”
“So I went back to work. Although I was broadly better, I had two significant recurrences of the chest pain, and the second time it just didn’t seem to shift. I had all the risk factors for gallstones, so I went to see a surgeon I knew, who agreed but said I should get an ultrasound just to make sure.
“Normally when they give you an ultrasound they give you a little bit of information, but the lady who did it was very quiet, and I had the feeling that something was not quite right. Then I got the results back which showed a right-side pleural effusion [an excessive collection of fluid in space that surrounds the lungs].
“A pleural effusion in a woman of my age who is normally fit and well is strange. From my experience I knew what pleural effusion can be caused by mesothelioma, so my mind was churning over. I think at that point I knew it was something bad, but I kept it to myself.
“So I went and had the fluid drained. The fluid came back negative for cancer, but this is not unusual so it didn’t put my mind at ease. The fluid built up again shortly afterwards, and the next step was to have talc pleurodesis and a biopsy, which I had in July 2021. Then on the 6th August 2021 I was asked to go into the hospital and to bring someone with me. I knew this was not a good sign, and I was right, and this is when I got my mesothelioma diagnosis.
“Our lives just changed in that instant, and I look back at my life before that day and I’m a different person to what I am now. And it’s funny, I don’t feel sad about that. It’s just that I live on a different set of rules now. I don’t live on the rules I lived on before where you’re kind of getting yourself through to your next holiday, or your next home improvement, you kind of run through your life. And I think that day it just stopped, and we had to revaluate everything. Its such a big impact on you, the financial impact, psychological impact, the fact that I had to revaluate my work life, our homelife.”
How did the diagnosis impact you?
“Our lives just changed in that instant, and I look back at my life before that day and I’m a different person to what I am now. And it’s funny, I don’t feel sad about that. It’s just that I live on a different set of rules now.”
“The first question I asked after my diagnosis was when can I go back to work? And the consultant said, “You should probably just go home and spend time with your family”. To me that rang alarm bells and I thought, oh god that sounds like I’m going die imminently.
“I assume some people bury their head in the sand and don’t want information, but I wanted to know. A lot of the information when you go online is all doom and gloom. I felt like I didn’t fit into any of these pictures, I’m not a man, and I’m not plus 65, which is where all the literature is coming from. I suppose it’s the same for everybody, when you get given some information, whether that’s a diagnosis, or anything that’s life changing, you want information, you want to know – what does that mean for me? But the support groups on Facebook were invaluable. It is through them I met people who were the same as me – women who were under the age of 65.
“One of the big questions I had to ask myself was whether I ought to go back to work. But I thought I’d be no good for the service, or me, to keep on having to take time off for treatment. Plus, I wanted to be in charge of my time, my life. Wake up in the morning and think today I’m going to do this or today I’m going to do that. And so I made the decision, and it was the hardest decision, because I loved my job. But I took ill health retirement in August 2022, just around my 40th birthday. And I miss it, I miss the people, but I stay in touch with everybody. Now I do aesthetics, I am passionate about good skincare. I have my own clinic room here where I see my clients. And I can it when I want to, I work my own rota.”
Treatment
“When I was diagnosed, we were still waiting for NICE to sign on the dotted line for dual immunotherapy to be available on the NHS, so my options were chemotherapy or a clinical trial. As there wasn’t a suitable clinical trial at the time, chemotherapy was my only option. I had 6 cycles over 4 months. Which was gruelling. I stayed in my Primark pyjamas in the living room with the dog and lots of box sets. It was rubbish, losing your hair, and just generally feeling like you’re on a roller coaster after drinking 8 pints of lager. I finished that in Jan 2022, and I had a good scan in March which showed some shrinkage, but then the next scan in June showed growth.
“We had a day of like wallowing and self-pity, but then thought to ourselves, there’s nothing we can do about it, so we just have to move on. It was then my oncologist referred me to a consultant who said that there was a trial I could be suitable for. So I went down Professor Fennel and the team at Leicester, and I started on the Mesothelioma Stratified Therapy (MiST)5 trial in September 2022. MiST5 is part of the big MiST trials. MiST5 is the last element. I am on immunotherapy single agent, and a PARP inhibitor, so basically immunotherapy helps your immune system fit the cancer and the PARP inhibitor interrupts the DNA of the cancer so its kind of a two-pronged attack.
“I am very aware that at some point I’ll have growth or I’ll have to stop treatment, I am prepared for that, and then we’ll look at other options. I’m almost a year and a half down the line, and in the very beginning I didn’t think I would be, so to still be here and to be pretty well functioning, is such a positive thing. When I get to the end of the line and I run out of treatment options, I don’t want to be fighting and trying. I just want to be comfortable with all my loved ones round me. I’ve seen it, That’s probably one of the not nicer parts of being a nurse and having that experience. But it does give you that little bit of insight into how you would like the end of your life to be, and I feel that I’ve got a clear picture of how I want the end of my life to be, and I’m not scared of that, I’m not frightened of it at all, because I’ve seen it done really well.”
How do you cope emotionally?
“I am very aware that I’ve got a terminal cancer, but I don’t want that to define who I am.”
“I’m a very pragmatic person. I think in part its being brought up with two big brothers who tortured the life out of me! But also, being born with a cleft lip and palette and all the difficulties that come along with that, like being in and out of hospital and the issues that come a long with having facial disfigurement and being a teenage girl. I just feel that makes you very resilient.
“I also try not to dwell on anything. I feel like dwelling on anything is wasted energy. If I get a negative CT scan, I’ll have that time where I have a cry but then I quickly snap out of it. I think sometimes people think that’s denial but its not because I’m very aware of what’s going on, I feel it when I breathe. I am very aware that I’ve got a terminal cancer, but I don’t want that to define who I am.”
What source of support do you have?
“My main sources of support are my family, my friends I’ve met online who are going through the same thing, but also my local support group, Readley. They’re lovely, they meet up twice a month and I try to get to them as much as I can. Its nice to know that you are sat in the same room as people that are going through the same thing as you. Online is great, you know chatting and texting is all great, but I’m a people person so I like to be with people.
“Mesothelioma UK as a charity its just always there , I feel like if I had a wobble or if there was something I wanted to know, even when it came to things like getting into clinical trials, the team are just so open and full of information. They’re a great source of support as well, and they have a young patient group which I think is lovely. I was introduced to a lady once and they said, this lady was diagnosed the same time as you, so you have something in common. And I’m looking at this lady who is 82 and thinking, yes, we were diagnosed at the same time but that’s where it ends. I’m 40 I’ve got a young family, a job, and so the young persons group is such a good resource because you’re in a place with people who are the same as you really.”
How are you raising awareness?
I wanted to make sure that I was spreading the word as much as I can to make people think about the environment they were in, to make people think – am I safe when I go to work, are my children safe when they go to school?”
“You get told the reason you’ve got that [mesothelioma] is through lack of management or you’ve breathed it on somewhere you shouldn’t have…and so then the fact that there is no treatment, I mean there are options to keep it stable, and give you some quantity and quality of life for some time but there is no cure, and I think that’s a hard pill to swallow sometimes. But that’s the card you’ve been dealt with and you manage it as you do.
“So I’ve decided to use some of my time to really dispel some of the myths about mesothelioma and spread the word about the disease itself, as well as the risks of asbestos. Asbestos exists in the majority of our schools and hospitals, and these are all buildings that were at one point in time intact and lovely and new. However, a lot of these buildings are now falling into disrepair, so I feel the risks are going to be really poignant in the next decade or so. I wanted to make sure that I was spreading the word as much as I can to make people think about the environment they were in, to make people think – am I safe when I go to work, are my children safe when they go to school?
“The government is very much of the mindset “If it ain’t broke don’t fix it”. But the thing with asbestos is it’s a silent killer, it’s just there, and when you breath it in, there isn’t an alarm that goes off. So much more could be done …prevention is better than cure I think is key. I think by having a plan and acting on it, we’re actively doing something, and the government are not, they’ve decided they’re not going to do that, they’re just going to wait, and replace things as they need replacing and unfortunately that means the risk is there, and that’s quite frustrating.
“If I thought that I could prevent just one person inhaling asbestos fibres, or just one person being more aware of mesothelioma, then I would be absolutely content.”