14 Jan 2026

Gene’s strength in the face of years of painful treatment has inspired his nephew

Gene Hawley with his wife

“For about 12 months before I was diagnosed I had a strange feeling of fullness and discomfort on my left-hand side,” said Gene, 59, who is now based in Boroughbridge, North Yorkshire but was living in Gloucestershire at the time. “It was 2010 and I was only in my mid-40s at the time, but I was so tired and lethargic. I would sleep for 12 hours a day and it felt like 12 minutes. I went to hospital twice for the pain in my side and they put it down to kidney stones. I now know it was most likely an enlarged spleen. I went to the GP with no luck several times until in October 2010 I finally put my foot down and asked for a blood test. I had the test at 12noon on a Friday and at 5pm they rang me and told me I had leukaemia, but not to worry they would see me on Monday! The whole weekend was absolutely awful while I waited for that.”

Gene went into his job running a large estate agency on the Saturday, little realising that would be his last normal day of work.

“I’d never been ill in my life at that point and I’d only ever been to see the doctor once before for an ear infection. When I turned up at the hospital on the Monday, they were just brilliant. They confirmed I had chronic myeloid leukaemia (CML) and that it was very rare in people my age. I had more tests and blood transfusions over the next few days, and the first thing they did was put me on to a drug to bring my very high white blood cell count down. Strangely enough over the next couple of weeks this completely cured the terrible eczema I’d been suffering on my hands, elbows, knees, eyes and ears. That was one good thing that happened with drug treatment. I wish the rest had been as successful.”

Gene was told there was a choice of drugs to get his blood cancer under control but they wanted to start with a trial drug.

“This made my eyes very light sensitive and gave me absolutely crazy headaches. Apart from trips to hospital I spent a lot of my time in a darkened room. My four children were aged between eight and 15 at that time so were all at home, but I tried to hide if from them and do normal things like help with homework. I just told them I had headaches.”

Gene would return to hospital every month for blood tests and bone marrow biopsies which he said were sometimes so bad he would “shake with pain” afterwards.

“I had a friend who I’d grown up with who strangely was diagnosed with CML three or four years before me. He said he refused to the bone marrow biopsies after a while as they could do a special test on his blood, so I asked for that and they did that from then on.”

The drug brought Gene’s CML under control but the side effects made him so unwell he was switched to a different medication. In the meantime, about a year after his diagnosis, he also returned to work, doing lighter duties. But it soon became obvious he couldn’t cope and he eventually left.

“I was on benefits for a few years but eventually retrained to be an HGV driver in 2016. In the end they settled me on Imatinib which I was on for five years. In this period of time, I also started developing what felt like severe gastro enteritis once a year. Apart from that I did regain my strength and certainly looked better. But my digestive issues got worse and worse. At one point I had to get myself from work to hospital in Gloucester on the bus as I became so ill – I couldn’t walk properly and my colleagues said I’d gone a strange brown colour. By the time I’d got there I was almost unconscious and I actually effectively lost the next seven days of my life as I just didn’t know what was going on. I remember waking up once to vomit over the consultant! The next time I woke up I was in hospital in Cheltenham. I ended up in hospital for around five weeks. They said it was either Crohn’s Disease or a form of colitis but still couldn’t work out a specific reason why it was so bad.”

Furloughed during covid, Gene’s cancer remained in remission so he decided to take a break from his medication under doctor’s advice, to see what would happen.

“It took a year for the cancer to come back but unfortunately the drugs last a long time in your system and my gastric problems didn’t get any better.

“They eventually put me back on a mix of two drugs, and it was after that that one of the most frightening episodes of the whole thing occurred. I woke up one morning and said to my wife ‘it’s dark in here’. She thought I was joking but we quickly realised I’d gone blind. I was rushed to hospital in Cheltenham and they found a lesion in my brain. They immediately took me off the drugs and said that if they were the cause my sight would come back, but that if it was cancer, it was permanent. It was absolutely terrifying. It took about ten weeks but eventually a pinprick hole of vision came back in one eye and gradually each day it got bigger until it returned.”

In 2021 Gene decided he could no longer work.

“I’m retired now. I do get bored and I’d love to work. Obviously, they don’t say it and I can’t prove it but I am sure all my problems are linked to the drug treatment. The drugs brought my cancer under control and I’m in remission and grateful for that but they’re so strong and I’ve been on them years. I’ve settled on a low dose of Imatinib. I have rheumatoid arthritis in my hands, peripheral neuropathy in my feet and legs and even my mouth – I have to take pregabalin for the pain but it doesn’t really touch it.

“I married my wife Panisara in 2016 and she has been great. We moved to Yorkshire in 2025 as I needed a fresh start but life is still very hard. I have taken a massive mental battering over the years. I used to be a manager for a big supermarket and also a car dealership, before I ran the estate agent. It’s hard to imagine now. I can’t take any mental pressure and over-analyse everything. Doctors say I’ve been a very complex case, and people don’t understand what I go through on a daily basis. I wish it could be explained more what might happen when you’re diagnosed. We need treatments that aren’t as harsh and have less side effects, and don’t have such a terrible impact on people’s lives.”

Gene’s strength in the face of years of painful treatment has inspired his nephew Will Hardwick to raise money to help other’s with leukaemia. During October 2025 he ran 15 half marathons in 30 days, raising over £4000 for Leukaemia UK, Blood Cancer UK and Leukaemia Care.

Gene’s nephew Will Hardwick

“October was the 15th anniversary of Uncle’s diagnosis so I completed one half marathon for every year he’s suffered from leukaemia,” said Will, age 27, who lives in Manchester and works as trainee solicitor. “I did the Macclesfield half marathon on behalf of Leukaemia UK and achieved a personal best of 1:38:43 – and that was my 13th half marathon in a month!

“To watch and listen to someone talk about the pain they are in is extremely difficult. For him to soldier through such an awful illness and be able to continually be caring and funny is what inspired me to want to help in a small way in the fight against leukaemia.”

@willagainstleukaemia
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