Tony’s Story

Tony sadly passed away on the 1st January 2022 following a 4.5year battle with pleural mesothelioma.

He was diagnosed in July 2017 at the age of 60.

He was a non-smoker, lifelong non-drinker and to date we have no idea when or where he was exposed to asbestos, working as a social worker all his life.

He underwent pleurectomy and decortication surgery in August 2017, followed by chemotherapy with carboplatin and pemetrexed for four cycles, which was completed in December 2017.

Subsequently, Tony did very well with stable CT scans until April 2019.

At this time disease progression was noted and as he was feeling well with no symptoms he were advised to take on a watchful waiting approach while awaiting possible admission to the CONFIRM trial.

This went ahead in August 2019 and Tony commenced fortnightly infusions in Belfast City Hospital.

Initial scans appeared to show some disease regression and then ongoing stable chest appearances until August 2020 when further spread was noted.

A MRI was also carried out in June 2020 due to persistent backache and Tony had one session of radiotherapy due to a concern about imminent cord compression.

The trial was subsequently unblinded and we discovered he had been in the placebo group.

Funding was then approved for Nivolumab treatment and he attended for this until August 2021 when he was admitted for two weeks to hospital with pneumonitis and pneumonia.
Treatment was therefore suspended indefinitely while he recovered.

Unfortunately after a few good weeks at home his condition deteriorated again leading to a further hospital admission in November.

Further disease progression was confirmed and palliative treatment recommended.

Tony’s family are now keen to raise awareness of this aggressive malignancy and improve services offered to patients in Northern Ireland, including access to specialist treatment and clinical trials, and establishing a pathway for referral to NHS colleagues in mainland UK as appropriate. Our vision is to have a similar task force to that already working in England and Scotland with weekly mesothelioma MDT meetings, including the involvement of clinical nurse specialists and a benefits advisor.

To aid us on this journey we are very grateful to be working in conjunction with Mesothelioma UK, linking in with the Northern Ireland Cancer Network, local cancer charities and raising the profile of this important work within NI, via media outlets, corporate partners and legal teams specialising in asbestos claims. The development of a Project NI task force is underway and fundraising efforts have already commenced.

We also hope to instil some positivity to other patients and families embarking on this journey. A positive mental attitude was second nature to Tony and without a shadow of a doubt played a vital role in managing his illness.

Liz Darlison appointed as new Deputy Lieutenant for Leicestershire

Liz Darlison MBE, Chief Executive of Mesothelioma UK, has been appointed as a new Deputy Lieutenant for Leicestershire. Mesothelioma UK is a national asbestos-related cancer charity, based in Mountsorrel, Leicestershire and works with over 30 specialist nurses based...

Farewell to Clinical Nurse Specialist, Anne Moylan

Mesothelioma UK is bidding a fond farewell to one of our stalwart Clinical Nurse Specialists, Anne Moylan, at the end of May. Anne will be leaving her nursing role in Portsmouth to start a new post at the national Targeted Lung Health Check Screening Programme. Here,...

Helen’s fundraising story

"My name is Helen. Michael, my husband joined the building industry to become a joiner straight out of education. He was very fit, healthy and successful until in October 1997 when unfortunately, this changed. Michael noticed a pain in his shoulder. After going...

Farewell to Trustee, Helen Childs

Helen Childs, Trustee for Mesothelioma UK, is stepping down after over five years with the charity. Helen, who is a partner at law firm RWK Goodman and heads up the team of specialist Industrial Disease solicitors, joined the Mesothelioma UK Board after working in...

(3 minutes)