Self-care and honesty vital for dads living with blood cancer
This Father’s Day, and every day, we’re celebrating brave Aussie dads like Bill Kuluris, who are living with a blood cancer while also being a key provider and rock for their families.
Father of two, Bill has been living with a blood cancer called chronic lymphocytic leukaemia (CLL) since 2016.
“I remember it clearly; I had gone to see my doctor as I do every year for my annual check-up.
“This was just prior to my wife, Belinda heading on her annual overseas trip and I thought nothing of it until her return when I received a text message from my doctor to come in,” remembers the 51-year-old.
“I had an appointment shortly after where he broke the news to me that I had CLL.
“It was a fair shock; I’d obviously heard of leukaemia but hadn’t heard much about the chronic type.”
Bill called Belinda to meet at a local café straight after the appointment to process the diagnosis; “I was obviously still in shock, but Belinda was straight onto it making sure I was ok.”
Telling the kids
Breaking the news to their young daughters, Madeleine, now 20 and Katie, now 16 was even tougher on the couple.
“That was probably the hardest thing, they were both just 16 and 13-years-old at the time and we had only just lost my own father to prostate cancer,” said Bill.
“I remember that day very clearly – we sat them around the kitchen bench and just told them, ‘Dad’s got leukaemia, it’s a type of blood cancer’.”
“Their facial expressions changed completely, and we had to back-track quickly saying how it was entirely manageable and we were only really telling them to keep them in the loop.
“Kids will often be the first to pick things up when something is wrong, so we wanted to make sure we were honest with them and they knew before the rest of our family and friends.”
Anxious for answers
Living in a small rural town called Moama in southern New South Wales, Bill was facing a six month wait to get reviewed by a specialist.
Anxious for answers, Bill instead sought a referral to a CLL specialist in his old hometown of Geelong, Victoria where he had worked as a nurse.
“Thanks to Belinda, I got in within a couple weeks and I actually knew the specialist from when I worked in the hospital,” explained Bill. “We have a really wonderful and comfortable relationship,”
“He walked me through how people living with CLL can still lead very full and happy lives and more times than not you will die from something other than the blood cancer.
“I was put on ‘watch and wait’ as my cancer is stable for the moment and I will just continue to have six-monthly check-ups and blood tests down at Geelong to monitor my levels.”
While life goes on for Bill, the burden of living with a chronic blood cancer can still weigh heavy at times and he has accessed support through the Leukaemia Foundation.
“As nurses, my wife and I are always telling our own patients the importance of accessing help should they need it and the many wonderful services that are available,” said Bill.
“I took my own advice just after my diagnosis and rang the Leukemia Foundation where I was put on to my own Blood Cancer Support Coordinator.
“That’s really helped me along the way to find my feet and feel comfortable with the fact that I could be living with this disease for the rest of my life.
“I think I would’ve been completely lost without that additional support and guidance.
“I obviously have amazing support from my friends and family but the Leukaemia Foundation staff have that specialised understanding of the disease and that neutral voice that can help keep you grounded.
“I’ve also attended Leukaemia Foundation support groups at Shepparton in Victoria and another small town close to Moama called Echuca.
“It’s great to talk to others going through the same thing and connect on how everyone is managing their blood cancer.”
Hosting Light the Night
Bill has also hosted the Moama-Echuca Light the Night event for the past few years, enjoying the chance to give back to the blood cancer community.
“The whole family gets involved, my daughters’ school help to get volunteers and with the fundraising,” said Bill.
“They have a whole bunch of friends come along on the day and help me in the lead up.
“It’s also a fantastic way to get the community together. Belinda and I previously managed a hotel in Moama so we have great contacts and networks to get the fundraising going.
“It’s held right on the river there that marks the border of New South Wales and Victoria.
“The lantern ceremony is always really special, and we all walk over the bridge and then back again acknowledging those conquering blood cancer in not just one, but two states.”
Due to the COVID-19 pandemic, the family will be taking part in Light the Night at home this year.
“We will be participating ‘COVID-19 style’, most likely at home around our fire pit and hopefully we can have some family and friends around.”
“Belinda has also put in a great effort making a number of face masks during August for our Light Night fundraising this year,” said Bill.
“They were all sold out in a day and we asked people buying the masks to donate to our Light the Night fundraising page.”
Advice for other dads
Bill is now firmly focused on the future, keeping an eye on his health to be there for his family and he encourages other dads to do the same.
“I know for many blokes, health and going to the doctor can often become a last priority,” said Bill.
“Who knows what could’ve happened if I hadn’t made that annual check-up, I would still be living in ignorance and not managing my blood cancer.
“You need to think of your family first and foremost and make sure you’re healthy for them.”