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I was 60 when I was diagnosed with chronic myeloid leukaemia (CML). It’s been more than ten years now, but I still remember the early days very clearly. I had been tired for a long time, far more than usual, but I put it down to work and a busy life. I had bad back pain too, which I blamed on getting older.
My symptoms built up slowly, so I didn’t think anything serious was wrong. But around Christmas 2013, things changed. I developed a toothache and had a wisdom tooth removed on Boxing Day. It should have healed quickly, but the bleeding wouldn’t stop. A few days later, I was taken to hospital, and that’s when doctors began to investigate properly.
Being told I had CML was a huge shock. I hadn’t expected anything like it. But once the doctor explained what it meant, I felt a strange sense of relief. At least I finally knew why I felt so unwell. Even so, it was frightening, and telling my children was the hardest part.
Within the first couple of weeks, I met the clinical nurses. They were incredible. They explained things clearly, supported my family and helped us feel more in control. I was very lucky to be cared for by Professor Apperley and her team at Hammersmith Hospital, where the nursing care is outstanding.
I had strong support from my children, their partners, my friends and my mum. What touched me most was the kindness from people I didn’t know well. Small acts of support meant a great deal.
Treatment started straight away. I had leukapheresis to thin my blood and then began medication. I had been warned about the side effects, but living with them was still a big change. I had to stop working, which caused financial worry and made me feel like I’d lost part of my identity. The fatigue was heavy and constant, and my confidence took a knock.
For a long time, my treatment worked well. But this past year has been difficult. One medication stopped working, and the next caused severe side effects. I’m now on a new treatment, and my blood results are the best they’ve ever been. I still manage muscle pain, fatigue and moments of anxiety, but I do my best to keep going. I pace myself, plan my days and listen to my body — something I never used to do.
My diagnosis has changed how I see life. It’s made me focus on what truly matters. I try to avoid negativity and spend time with people who bring me joy. My family, one close friend in particular and those who check in on me have been my anchors.
Leukaemia Care has also been a huge support. Their information helped me understand my diagnosis when everything felt overwhelming. Later, when I worked with the charity, I realised how much more they do. Speaking to the staff made me feel understood and cared for.
I’m now a Buddy Volunteer for Leukaemia Care, supporting people who are newly diagnosed. I always encourage them to reach out, ask questions and build a strong relationship with their clinical nurse. No one should face leukaemia alone.
If there’s one thing I wish more people knew, it’s that CML is cancer. It’s not curable, but it is treatable. The side effects can affect daily life, and fatigue is far more than ordinary tiredness. People living with CML need patience and understanding.
CML has changed what I can do, but it hasn’t changed who I am. I’ve learned to slow down, to treasure time with loved ones and to appreciate every good day. Living with leukaemia isn’t easy, but with the right support and determination, you can move forward.