Monica Johnston’s Story – Winning a New Year’s Honour while fighting mesothelioma

Monica Johnston, 65, had been a nurse for almost 46 years for Belfast Health and Social Care Trust. Despite her long career, she had never heard of mesothelioma – until she was diagnosed with it in January 2023.

Sadly, the cancer brought an early end to Monica’s nursing career, but her dedication, compassion and professionalism never wavered, even after she was forced to stop working.

This year, Monica has been awarded with a British Empire Medal (BEM) for services to nursing and the community of Northern Ireland in the 2024 New Year Honours list, in recognition of her outstanding work.

A lifetime dedicated to nursing

Monica had always wanted to be a nurse and even as a young child, she never considered any other career path.

“I still have a photograph from when I was five years old practising nursing.”

Monica began her career in March 1977 as a student nurse and worked her way through to Admissions and Discharge Co-ordinator for the Neuroscience department at the Royal Victoria Hospital, Belfast.

Covid or cancer?

In October 2020, Monica got Covid19, which left her with some hoarseness in her voice and she was prescribed some antibiotics to get rid of it. However, she was back in the doctor’s office the following November, this time with a bad chest infection. She’d tried three rounds of antibiotics by this point and was sent for a chest X-ray.

“I had my X-ray in January 2022,” she said. “It showed I had consolidation of the left lung which looked quite serious, so they referred me to a respiratory consultant for a second opinion. I then had a CT scan the following month.”

The amount of fluid in Monica’s lung was so small that the consultant advised that there was nothing else to do except wait and watch. She returned to work but found herself getting out of breath quickly, which she had never experienced before. Her condition kept getting worse and in July that year, she was rushed to the emergency department with a collapsed lung and had to have two litres of fluid drained.

“I kept asking if it could be cancer,” she said. “But the answer was that there was no indication of it. Just over a month later, they discharged me with a diagnosis of long Covid.”

Monica’s condition kept worsening and after several more trips to the hospital, she was sent for another CT scan in December 2022.

Life with mesothelioma

“I got a call in January 2023 saying for the first time, they’d found a nodule, and they’d contact the surgical team,” Monica said. “I had a biopsy that month and the surgeon told me they’d managed to take away some of the fluid, as well as lots of lumps and bumps. I asked again if it could be cancer, and this was the first time anyone actually said that it could be.”

Unaware of the prognosis of mesothelioma, Monica was undeterred, having known many people who have battled cancer and survived. She was referred to a consultant surgeon in Leicester who said hopefully they’d caught it early, but it was a matter of when it would come back, not if.

Monica was devastated, not only with the confirmation that she had contracted mesothelioma, but also at the fact that it was having such an impact on her health that she was forced to end her career earlier than she had wanted to.

“Nursing has been my whole life,” she said. “It’s something I’ve always wanted to do. My children would joke and ask when I was going to retire but I had no plan to. For the decision to stop to be taken away from me is really hard to come to terms with.

“I also struggle with the uncertainty. I want to be able to make the most of the time I have left but the uncertainty is hard to deal with.”

Monica elected to have surgery – an option she hopes more people will take if it is available to them – and recovered remarkably well.

“The surgeon, Mr Nakas, said the scar would be like a shark bite, but my son jokes that it’s more like a goldfish bite,” she said. “I was on my feet so quickly and six weeks later, I’ve been swimming in my local pool and walking with the aid of my zimmer.”

Making a change

Although Monica had been a nurse for 46 years, she had never heard of mesothelioma until she was diagnosed with it and was struck by the lack of specialist support and knowledge. With the help of her family, Monica began to advocate for increased awareness about mesothelioma in Northern Ireland.

“We really want to see more specialist help available to people affected by mesothelioma, as there is currently very little,” she adds. “There’s no mesothelioma Clinical Nurse Specialist (CNS), and unfortunately, the majority of healthcare professionals we’ve met just haven’t encountered it.”

Monica also began to work closely with Project Northern Ireland, which aims to increase mesothelioma support by creating NI’s first CNS posts, setting up and linking support groups and linking with other cancer charities including Macmillan Cancer Support Northern Ireland.

Project Northern Ireland was formed after the Rodgers family, from Newry, Co Down, contacted Mesothelioma UK following the passing of their family, Tony, on New Year’s Day 2022. Monica continues to support the Rodgers family and other people affected by mesothelioma in Northern Ireland, in lobbying for Project NI and more support for mesothelioma within Northern Ireland – which remains the only part of the UK without any mesothelioma specialists.

A lifetime of achievement

Monica’s unwavering support to the Belfast Health and Social Care Trust, as well as her fierce dedication to the nursing community during and even after her career, will receive the recognition it so deserves.

When she received the letter informing her that she was to appear on the New Year Honours list, she couldn’t believe it.

“I thought it was a scam!” she said. “I loved nursing and helping people get better or receive the right support where they couldn’t. I never wanted my career to end and never expected to receive anything more than a thank you.

“I feel very honoured, emotional, and yet humbled to receive such an honour. Mesothelioma turned 2023 upside down for me, but I’m still here thanks to Mr Nakas and the staff at Glenfield Hospital, and am so glad to start 2024 with such positivity.”

If you would like to discuss any of the issues raised by this interview please contact your healthcare team or call our support line 0800 169 2409.

Please note, we are currently updating our advice content regarding surgery for mesothelioma. If you have any questions about this topic, please speak to your healthcare team or phone our support line.

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