My life changed in an instant after terminal diagnosis

When Patrick Malone was diagnosed with a rare type of incurable cancer in May 2024 "absolutely every aspect" of his life changed in an instant.

"It was heartbreaking and very scary because you realise fairly quickly that it's terminal and the prognosis is suspect," he said.

Almost two years on, he said a new support service for people like him who are living with mesothelioma has been "invaluable" for him and his family in dealing with the diagnosis.

Access to immunotherapy treatment means the 66-year-old's cancer has reduced and is now stable, something he said "buys me a lot of time".

Mesothelioma is typically associated with exposure to asbestos but, while there is no cure, early access to specialist nursing and coordinated care can make a significant difference.

It's something Patrick said was "a big plus point at the time when there really wasn't any plus points".

"Nobody will realise how good [the service] is until maybe they either get cancer or know somebody that has it," he said. "And then it becomes apparent and very much needs to be built into your new life living with the disease."

A retired civil servant, Patrick said he never worked with asbestos during his career, but looking back he said there was a role in one government building in particular that involved him going up and down to a "really dusty and really murky" basement which stored files.

The building was later closed after asbestos was found.

The use of asbestos in building was completely banned in 1999, so the risk of exposure is much lower nowadays, but materials containing it are still found in many older buildings.

"I assume my time there has exposed me to asbestos dust on more than one occasion," he said.

He has submitted a claim for compensation, but said it was "hard to take" that doing his job "most likely" resulted in him being diagnosed with cancer.

Carol Johnston, one of only two mesothelioma clinical nurse specialists in Northern Ireland, said the timeline from exposure to diagnosis can be challenging for patients to come to terms with as many will has "maybe contracted [mesothelioma] through their day-to-day work, maybe 30 or 40 years ago".

"It can feel like a late diagnosis, but it's not - it's just prolonged in how it behaves and how it presents itself."

Ms Johnston works with Stephanie Todd to provide regional support services to patients and their families in the form of specialist clinical advice, emotional support, and practical information.

The service began in September 2024, bringing Northern Ireland in line with care offered across the rest of the UK.

Since then, it has received more than 60 referrals for people like Patrick from across the region.

He said it has been an "open door" for help and reassurance.

"I'm fortunate that, even though I've got this disease, I'm getting the very best of treatment, the very best of care," he said.

Until recently mesothelioma patients would have "potentially fallen into other specialities, or have had a long pathway to diagnosis", but Ms Todd said this, combined with the "sheer impact of the diagnosis itself", illustrates why a dedicated service is needed.

As it is a terminal illness, Ms Johnston said they would be treating their patients with palliative care from diagnosis through to end of life, but having a designated nurse can give patients more individualised support.

"The palliative aspect means that we are managing symptoms and supporting patients and providing a service that we can help them have a quality of life - that they can live as well as possible for as long as possible by whatever way that is," she said.

As well as providing emotional support, the specialist nurses help patients navigate their journey offering insight into treatment plans, guidance when filling in forms, help with travel insurance, or to talk to about scan results.

Niamh Rodgers said having the clinical nurse specialists is "invaluable" for patients and their families, adding it will provide a new level of care and expertise for mesothelioma patients.

"We are very proud of what we have achieved and the stage that we are at," she said.

"It is something that we could only have dreamt of four years ago whenever daddy passed away.

"We know that he'd be very proud of what we have achieved."

Mesothelioma is a type of incurable cancer that develops in the lining that covers the outer surface of some of the body's organs, according to the NHS.

It's typically associated with asbestos and usually develops more than 20 years after exposure.

Mesothelioma mainly affects the lining of the lungs, although it can also affect the lining of the stomach, heart or testicles.

The UK has the highest incidence of mesothelioma in the world, with around 2,700 people diagnosed each year – about 50 of those are in Northern Ireland.