After following careers in the NHS and other related sectors, husband and wife, Darren and Caroline Lyons moved to their dream destination of Cornwall in 2015. Caroline was still working in rehabilitation in a local nursing home and Darren was a project manager in the NHS. They had “conquered all the mountains that we wanted to climb”, according to Darren, they had renovated an old house and planned to retire in Cornwall.
After a period of illness that followed a broken leg in 2020, Caroline was sadly diagnosed with mesothelioma. Although Caroline tragically passed away from the disease in October after a 20-month battle, her legacy now lives on through Darren and daughter, Anna’s determination to make life count.
A time of real highs and lows
Darren says: “Caroline and I had been married for 33 years. We met in 1989 in Bristol and married five months later. We have a wonderful daughter – Anna, son-in-law Anthony and Poppy, our two-year-old granddaughter.
“Caroline’s nursing jobs had taken her from army hospitals in Northern Ireland, Germany and Hong Kong, all over the NHS and in international primary healthcare schools in rural communities in the Philippines, Uganda, South Africa and Mozambique.
“Following an accident where she broke her leg, her balance was affected requiring her to use a walking stick, she then developed a pain in her shoulder blade. We thought that physio would clear it but after five months of chiropractors and massages, it was still there. By Christmas 2020, she contracted the flu or a chest infection which prescribed antibiotics didn’t clear.
“A locum GP sent her off for an X-ray, followed by a CT scan the next day and she was diagnosed with mesothelioma. It was a massive shock and on Christmas Eve, Anna announced her pregnancy, so it was a time of real highs and lows.”
Support from nursing teams
Darren continues: “The treatment and care that Caroline received was brilliant. She was referred to the mesothelioma team in Truro and we also made connection with the palliative care team. Anna and Anthony temporarily moved to Cornwall to live with us for three months and Anna gave birth to Poppy in Truro in September 2021.
“We went to visit Anna and Anthony who live in Glasgow in July, but Caroline’s health deteriorated and we could not return to Cornwall. So, we remained, hoping that Caroline would be here for Poppy’s first birthday in September 2022.
“They say that nurses are the ‘worse type of patients’ and having managed terminally ill patients herself, Caroline tried to protect us against the worst of what she was feeling and thinking. Desperate to survive to see Poppy’s first birthday, Caroline was reluctant to engage with symptom management and end-of-life planning.
“Only days after Poppy’s birthday, Caroline deteriorated significantly. We were still caring for her at home which was very difficult for Anna and me. Caroline eventually had to be admitted into the local hospice in Paisley and passed away just 30 hours later. She died a week after Poppy’s birthday.”
Progressing with civil claim
“We were encouraged to pursue a civil claim and engaged Hugh James solicitors who went through Caroline’s work history. She’d had low level exposure in hospitals and worked in couple of hospitals that had been built with asbestos during wartime but were demolished in the 1990s,” says Darren.
“After a 3-4-year investigation, Hugh James are now putting court papers in so although it can be a long process, Caroline wanted to highlight the dangers of asbestos exposure and bring it to the attention of employers. Irrespective of its success, making a claim – does hold those responsible for our welfare to account.”
Translating experiences into art
Darren continues: “After Caroline died, I went back to work as a Project Manager but it no longer had a meaning for me. I couldn’t put my heart in it any more.
“Caroline always encouraged me to ‘take up art seriously’. So, in September 2023, I talked to colleagues and took nine months off to do an Access Course for an Art degree at Camborne College in Cornwall. For my final project, I have explored the changes in our relationship during Caroline’s illness, in particular – how being terminally ill can be lonely and emotionally isolating for both the sufferer and their loved ones.
“The Access course at Camborne has been a fantastic experience and I’m delighted that I’ve now been accepted on a course at Goldsmiths institute of Contemporary Art in London, starting in September 2024. I’ll be around very talented people and I can’t wait to see how far I can go.”
Changes all round
Darren reflects: “Anna and Caroline were really close. Anna has been deeply affected by the challenges of the last 3-4 years. Anna worked in Glasgow as a RN in Trauma unit but has likewise changed direction. Last year, Anna studied at Edinburgh ‘Garden Design’. Recently, Anna’s class entered a garden in the Scottish Garden Design competition and won first prize. Anna is now working as a part-time garden designer. Caroline would be over the moon!
“It is nearly two years since Caroline left us – you’d think it would get easier – but for Anna and me, the sands of grief are constantly shifting. It was hard to imagine life without Caroline, but not getting ‘stuck’ in those thoughts has been essential. So, to make sense of it all – and in tribute to Caroline, Anna and I are determined to live our best lives, without fear, doubt or compromise. I think Caroline would agree!”
————————————————————————————————————————————
Mesothelioma UK continues to work to raise awareness of the risk that asbestos causes to healthcare workers.
Healthcare Workers and Mesothelioma: Experiences of Presentation, Diagnosis, Treatment and Care: Healthcare Worker Mesothelioma Asbestos Guidance Study (MAGS)
The MAGS study was carried out by researchers at the University of Sheffield and supported by donations from the family and friends of the late Dr Mags Portman, a pioneer in the fight to prevent and control HIV, who died of mesothelioma in 2019.
With many NHS hospital buildings containing asbestos, the study aimed to explore the experiences of healthcare workers in the UK with mesothelioma and to develop recommendations for increasing awareness of the risk to healthcare workers.
To read the full report, click here
