Declan's story
"Living with chronic lymphocytic leukaemia (CLL) doesn’t interfere with my life, I’m healthy enough."
"I’m maybe a little overly concerned with aches and pains, but other than that, I don’t really have to do anything differently. But I always know that I have cancer, it’s always in the back of my mind."
Declan Whelan, 57, from Finglas, Dublin, started to experience some concerning health issues in 2014, including night sweats, sudden but brief spells of temporary blindness, blurred vision and swelling under his armpit. Declan, who was living in Melbourne, Australia at the time, says it took him a few months to decide to see his doctor.
“Between January 2014, and when I was diagnosed in April that year, I started getting blackouts in my eyes, where I’d suddenly lose my sight,” says Declan. “I wouldn’t be able to see for four or five seconds. Then my eyes would clear, and I’d be grand. It happened a couple of times. I was also getting blurry sports in front of my eyes.
“My mother came over from Ireland to visit me, and at this point I was getting little protrusions around my neck. I was getting jowls. My mother said, ‘What’s the story with your neck? You need to get that checked out’.
"I was working one day, and I was walking up a steep hill, but I was completely exhausted doing it, I had no energy left once I got over it. I thought that I had better get it checked out then."
“I went to my doctor, and they sent me for tests. After I did the tests, I got called at 5 o’clock that evening, and the doctor told me to go straight to A&E. Fortunately, I lived close to the Olivia Newton John Cancer Research Institute, so we went there, and that was where I got my diagnosis.”
The news came as a surprise to Declan, but he was reassured by his oncologist who told him that his cancer was treatable.
“He said the bad news is, it is cancer, but the good news is, it’s not going to kill you. He said of the types of CLL there are, I had the ‘good’ one. That really put me at ease.”
Declan had chemotherapy for six months and found ways to cope with the side-effects of the treatment.
“While the chemo I was getting was mild compared to other cancer treatments, it was still difficult to get through,” says Declan. “I did find a couple of things helped.
“First was having somebody to talk to in the hospital who was a point of contact for CLL patients. Second was when I was suffering with the nausea that comes with the chemo treatment, which I suffered with really badly, I found comedy DVDs a great help to take my mind off the sickness."
Declan also went on a clinical trial where he was put on a medication that reduced his white blood cell count. His cancer then went into remission. He was on the clinical trial for four years but decided to come off it as he began to experience night sweats and tiredness.
In March 2018, Declan and his family returned to Dublin. He went the Mater where he gave staff a disc of his medical history that his Australian doctors had given him. After that, the specialist recommended blood tests every three months and all was well.
“In August 2018, after a blood test, I was told my white cell count was starting to go up, but not dramatically, so the decision was to wait and see. By 2019, the count had gone up significantly and I was advised that there were a couple of different drugs out which worked well with my form of CLL."
“I started on one of them, but started getting side effects which may or may not have been as a result of the drug. So, after some deliberation, the medication was changed. With a combination of the new medication and anti-virals, my health and counts went back to normal.
“In September 2022, I noticed a lump under my arm so I went back to hospital. They took a biopsy from the lump, and they told me the tablets I had been on weren’t working for me anymore. So they put me on another drug, and no chemo was required, which I was very relieved about. I’ve been doing pretty well on that ever since.
“Every three months I get bloods done and I take tablets every day. At the moment, I’m doing OK on the tablet that I’m on. But I know that, if and when it stops working, there’s a chance that I may require a bone marrow transplant.
"However, new advancements are being made all the time, and I am pretty confident about the future.”
While Declan is doing well on his current treatment, he was concerned when he moved from Australia to Ireland, as he had private health insurance in Australia which covered his cancer treatment. But, because CLL was a pre-existing, ongoing condition when he moved to Ireland, he couldn’t get coverage. He says that he has received very good care in the public system, but he has experienced delays.
"With CLL, like a lot of cancers, you’re at an increased risk of developing skin cancer. I need to see a dermatologist because I’ve noticed some spots and blotches on my face. I went to the doctor about it in July 2024, and my appointment with the dermatologist isn’t until September this year."
“I’m pretty annoyed about it, it’s a ridiculous length of time to be waiting. I feel like if I had health insurance or could be pay to be seen privately, I’d be able to see a dermatologist a lot quicker, but I don’t have the money to be seen privately. But, otherwise, for my CLL treatment, the public system has been pretty good.”
Declan is sharing his story to highlight the importance of getting any symptoms of concern checked out by your GP.
“If you notice anything, get yourself checked out,” he says. “I think people generally know themselves when something’s not right. Don’t ignore anything that’s concerning you, because the quicker you get diagnosed, the sooner you’ll start your treatment, and you’ll improve your chances of having a good outcome.”
