A WOMAN from Penrith has spoken out after her dad almost lost his battle with chronic lymphocytic leukaemia (CLL).

Amy Milburn’s father, Simon Wilson, was diagnosed in 2022 with CLL which sent a ‘shockwave’ through the family.

Chronic lymphocytic leukaemia is a rare type of cancer that affects the blood and bone marrow.

It develops very slowly and cannot usually be cured, but it can be managed with treatment.

“My dad was diagnosed in late 2022, however, for a few years he hadn’t been feeling well, he just didn’t know what it was,” said Amy.

“It’s been a difficult few years and we’ve just been on holiday, considering we nearly lost him last year, we’re just enjoying him this year. Just enjoying him every day.

“There’s just so much about CLL, I didn’t even know it existed till he was diagnosed. The disease is so personal.

“He has a gene that won’t tolerate a lot of the chemotherapy treatments. That, mixed with the disease itself, means it’s been hard.

“As a social worker, I thought I understood pain and grief. I thought grief was post death, and didn’t know anticipatory grief was a thing.

“The shock wave it sent through the family was unbelievable. Incurable leukaemia.

Amy and SimonAmy and Simon (Image: Supplied)

“Nothing can prepare you for that phone call. I spent months feeling horrible, waves of grief, which I’ve experienced when grandparents have died. But he’s still here.

"How can I be sad when he’s still here?”

Blood Cancer UK has issued a suite of recommendations for policymakers focusing on the blood cancer workforce, diagnosis, removing care barriers and improving treatment access after it said ‘needless lives’ were being lost due to blood cancers like CLL in the UK.

Amy said that her father was discharged from hospital too early because of ‘bed pressure’ but said that the doctors had been ‘amazing’.

“It’s been a rollercoaster of emotions over the past couple of years,” said Amy.

“Dad used to have a sleep in the car at work due to the fatigue. All of his symptoms you’d put down as not that bad and he didn’t realise it was the CLL until it got really bad.

“The vulnerability and the different complications, that’s the hard part.

“The NHS is amazing, they’ve been amazing, but I think it’s struggling, and I think that as a family you have to fight at every turn.

“My dad was discharged too early and because of pressure on beds, time, staffing.

“The consultants, cancer team are amazing. It’s the overriding system and it badly impacts the patients and the nurses, and doctors.

"All my dad can say is how amazing the consultant is - he’s been brilliant. But you can feel the pressure everyone is under.

“My advice to others is make yourself focus on the now and the good, and it’s okay to feel sad. While he’s well you need to remember to enjoy him.

“This time last year he was fighting for his life - he’s made of iron, I think.

“There was a moment he was playing football with my husband and my children. It was amazing that he could do it. It was huge and special.”