Rallying for a cause close to home
Events
When Croydon Park parish priest Fr Charles Lukati runs the Clare Valley Half Marathon in April, he will be spurred on by the hope that he is helping people like parishioner Domenic Scoleri in his ongoing battle with multiple myeloma.
Myeloma is a little-known blood cancer that affects 18,000 Australians and generally involves multiple bone lesions, hence the name ‘multiple myeloma’.
After learning that one of his parishioners had the debilitating disease, Fr Charles Lukati decided to raise funds for Cancer Council SA through his passion for running.
“I am running in solidarity with those affected by the devastating disease,” said Fr Charles, who has previously run half-marathons in aid of Caritas Australia.
Fr Charles Lukati running a marathon.
“Some of these are my parishioners and friends.
“The race is not just a personal challenge, but a prayerful act for strength and healing of patients and their families.
“It is also a heartfelt tribute to the incredible individuals and organisations working tirelessly towards finding a cure and improving life.”
No-one knows the importance of good support, and finding a cure, more than Domenic Scoleri. He will never forget the shattering moment in 2014 when specialists told him he had multiple myeloma, a disease he’d never heard of before.
Dom comes from a tight-knit Italian family and didn’t tell his mother, now 91 years old, about his diagnosis for months, knowing she’d be “very emotional about it”. Similarly, when he told his sisters, he had to do it one-by-one.
A decade later, we’re sitting in the office at St Margaret Mary’s Church where Dom volunteers. He wants to chat about the things most people are too fearful to broach; illness, death, and the unknown.
Based on his medical prognosis, he shouldn’t be alive, but Dom isn’t one to give up.
With a successful career in engineering and project management behind him, he applied his skills to learning about his disease, the treatments and how to best manage the side effects.
“I treated the cancer as a project to manage, rather than a battle to fight,” he says.
“I don’t use the term ‘fighting’ cancer because I believe it has negative connotations.
“I prefer to say I’m ‘living with a disease’.”
Focussing on the facts meant Dom could learn as much as he could and coordinate his care and treatment while avoiding emotional overload.
He joined support groups and became an engaged patient, coordinating his care with his medical teams. After initial chemotherapy, Dom underwent a stem cell transplant in 2015, which he recovered from at home. He then joined a clinical trial for an experimental drug, which was successful in keeping his cancer at bay for five years.
Domenic Scoleri
In late 2022 Dom’s cancer became active again, requiring further treatment. Through it all he maintained a positive attitude.
“New treatments mean that multiple myeloma is now more manageable as a ‘chronic disease’ rather than a death sentence,” he says.
“I won’t pursue treatments that would give me a longer lifespan but diminish my quality of life.”
Dom talks about multiple myeloma to anyone who will listen. He is actively involved in cancer research and advocacy, with the goal of promoting awareness and contributing to advancing knowledge and treatment.
“When I told people I had cancer, their reaction changed,” he says.
“There is a stigma and a ‘shock, horror’ response to it because cancer is often still seen as a death sentence.”
Many of Dom’s long-time friends “quietly disappeared” because they didn’t know what to say or how to react.
“Society needs to talk about cancer more openly,” he says.
“Very few people were really there for me to talk to in the early stages.”
On the flipside, he cannot praise medical staff and practitioners enough, particularly his first haematologist at Kurralta Park’s Icon Cancer Centre Adelaide and his haematologist, haematology team and nursing staff at the Royal Adelaide Hospital.
“They are all brilliant. Nurses visited twice a day when I was recovering at home alone after my stem cell transplant.”
Dom has talked about his story during seminars and is involved with South Australian Health and Medical Research Institute (SAHMRI) research into mental health and the emotional toll of dealing with a serious illness like myeloma, and how important it is to have a support system to lean on.
“It’s a hell of a grind. It’s so difficult to navigate and resilience is crucial, because this disease is at you all the time,” he explains.
Despite the significant psychosocial burden and fierce consumer advocacy, there is a lack of accessible mental health and wellbeing services for people living with myeloma.
This has inspired Dom’s idea to build a program aimed at improving wellbeing and boosting resilience. Funded by a Medical Research Future Fund (MRFF) grant, the ‘MyWELL’ study brings together researchers from SAHMRI, University of Adelaide, Health Translation SA, Flinders University, University of South Australia, Central Adelaide Local Health Network, University of the Sunshine Coast and University of Technology Sydney.
Led by cancer care researcher, Dr Hannah Wardill, and wellbeing intervention expert, Dr Matthew Iasiello, collaborators will work closely with consumer advocates like Dom to tailor a customised version of the ‘Be Well Plan’, a six-week, evidence-based mental health and wellbeing program created by Be Well Co.
Once developed and trialled, the ultimate goal is to deliver the program at scale to patients around the country, in partnership with Myeloma Australia.
While there’s still no cure, Dom refuses to dwell on ‘what ifs’. After his diagnosis, he continued working (until retirement – a shift in pace he’s still getting used to) and enjoys wilderness trips with his researcher son who is based in Tasmania.
“We get up to all sorts of adventures,” he says.
“When I was first diagnosed, I thought I’d be doing backflips if I made it to 65; I’m nearing 70 now and I’m still here, but the spectre of the disease returning at any time is always in the back of your mind”
Fr Charles will run the Clare Valley Half Marathon on April 6 to raise money for Cancer Council SA. Donations can be made at doitforcancer.com.au/fundraisers/charleslukati/
Jump to next article
