A shock diagnosis of chronic lymphocytic leukaemia (CLL) at just 47 years of age turned Steve Gale’s world upside down. As the COVID pandemic unfolded, he was advised to ‘watch and wait’ because he didn’t have any major symptoms. This meant he would need regular check-ups to ensure the blood cancer didn’t progress and, in the meantime, he should live his life as normal. But that didn’t stop his feelings of anxiety about what might happen next.
When Steve had his annual check-up, which included blood tests, in March 2020, he wasn’t expecting any unusual results. But a few days later, Steve’s GP called him at home and broke the news that he had chronic lymphocytic leukaemia.
Steve didn’t have any other symptoms and, as CLL is generally a slow-moving blood cancer, the doctor said he didn’t need urgent treatment. He referred Steve to a haematologist.
The GP’s advice didn’t stop Steve worrying about what could happen next and he went online to find out more.
“Stay away from Dr Google,” he says. “If you have to go online, only look at stuff that’s less than five years old, and go to the Leukaemia Foundation and similar organisations across the world.”
After seeing a haematologist in mid-April, Steve felt like he had more questions than answers.
He was around 20 years younger than most people who receive a CLL diagnosis and was advised by the haematologist to ‘watch and wait’.
Many people with CLL won’t need treatment and, in some cases, the blood cancer can be managed for years before it progresses.
Managing CLL with a watch and wait approach can be challenging and people often feel like they should be doing something in the meantime. Learn about the actions you can take if you or a loved one are on watch and wait.
Steve struggled with the emotional effects of his diagnosis and, once again, went searching for information and support.
“The best early resource was handed to me by my haematologist – the Leukaemia Foundation CLL booklet,” he recalls.
-
Chronic lymphocytic leukaemia (CLL) information booklet
pdf / 1.32 MB
Steve also found CLL support groups on Facebook where people in his age group shared their experiences and supported each other.
“I suffered a lot of anxiety…it was like laying in bed in a darkened room and wanting to get up, but I was afraid there was a snake in the room,” he says.
Bruising, bleeding and chainsaws
By November 2021, Steve was experiencing extensive bruising and bleeding. Another blood test was followed by an urgent call from his GP.
“He said, ‘Go to hospital now, I’ve told them you’re coming. Your platelets are at six (down from 150) and you could bleed out from a bruise or cut’.
“I had been operating a chainsaw that day!” Steve recalls.
He was no longer watching and waiting for his condition to change. Steve had developed immune thrombocytopenia purpura (ITP) which meant his immune cells were mistakenly attacking and destroying his platelets. He was admitted to hospital for the first time in his life.
Since then, Steve’s treatment has included high-dose steroids, plasma transfusions (immunoglobulin) and chemo-immunotherapy. He’s also experienced a range of health issues related to his blood cancer and treatments.
“Fatigue was a problem because my body was at war with itself,” Steve says. “There were days that I was so tired, I couldn’t sleep or read a book. It was incredibly unpleasant.”
For many people living with blood cancer, cancer-related fatigue has an enormous impact on their quality of life. Learn more about its causes, symptoms and management here.
By early 2024, Steve was also struggling with constant infections and developed Skeeter syndrome. This meant he was highly sensitive to mosquito bites.
A new mosquito bite developed into an open wound which then became cellulitis, a bacterial skin infection, in his right hand.
“My 90-year-old mother had cellulitis at the same time as I did, but I didn’t want to tell her that. I also got tonsilitis, colds, fevers and flus,” Steve says. “Every little cut and nick became infected.”
In October 2024, Steve started a new treatment protocol involving medications and immunoglobulin infusions. He’ll continue the treatment over the coming months with close monitoring of his responses, side effects and quality of life.
There’s a long list of side effects. The worst so far, is an itchy rash that’s all over my body.
“Because my disease is reasonably aggressive, this is about constantly staying on it and keeping a foot on its throat,” Steve says.
Back on the farm and feeling less fatigue
Steve currently visits Port Macquarie Hospital every 10 weeks for immunoglobulin infusions.
The treatment takes around four hours each visit and helps reduce his risk of infections. He also takes various other medications to help manage his blood cancer.
With reduced levels of fatigue, he’s back on his farm and focusing on his blacksmithing and sculpture work.
“I think I could classify myself as having a rather aggressive case of CLL. Fortunately, I’m reasonably young with no co-morbidities, so hopefully treatments will remain effective for quite some time yet,” he says.
“If I had CLL 70 years ago, or lived in a developing nation, I probably wouldn’t be here. Medical science and the generosity of plasma donors keeps me going. Having access to these treatments is just wonderful.
The emotional journey has been interesting and I believe everyone with CLL goes through a similar journey. I do what I can to help people who are starting out on this pathway with the emotional and technical side of things.
