Sarah-Jane Hayes

When Sarah-Jane kept coming down with repeated infections, she took herself to her GP. However, it was 14 months until Sarah-Jane was finally listened to and given her diagnosis of hairy cell leukaemia. Now in remission, she tells her story.

I was diagnosed with hairy cell leukaemia (HCL) in May 2018 at the age of 45. This leukaemia is very rare, especially in women and my age group.

I had recently left my job as a retail manager due to being unable to stand on my feet all day and was off sick multiple times due to various infections. My first symptoms were a suspected chest infection and wheezing.

After a blood test in March 2017, I was found to have low platelets and low white blood cells, and a very high D-dimer result. I was sent to the hospital and after examination it was noticed my spleen was enlarged and I had deficiencies in ferratin, calcium and vitamin D.

Within the next year I was constantly back and forwards to the doctors with various infections. I told them I had leukaemia and wanted a test but was told it was doubtful I had it.

Finally, in May 2018 I had bruising on my legs, bleeding gums, constant lethargy, decreasing platelets and aching bones. After begging for a bone marrow biopsy, they gave me one. I had hairy cell leukaemia. It had taken me 14 months to get a diagnosis after constantly visiting a haematologist with symptoms. My initial reaction was relief followed by complete panic.

I left work and started chemotherapy two weeks later. I had a course of cladribine, and I eventually started to improve. The chemo was fine; I was very lethargic but didn’t have too many side effects.

In December 2018, I was told my chemo had been partially successful – I was in partial remission. But within a few months I was feeling ill again and, by April 2019, I was back in hospital with severe vertigo, bruising and bone pain, and constant exhaustion. I was given a brain scan, lumbar puncture and bone marrow biopsy. My leukaemia was growing back rapidly.

I started on chemotherapy again, this time a combination lasting three months in total. My partner left his job and became my full-time carer.

Throughout this time, I was constantly told how amazing I looked even though my body was fighting this disease inside. Leukaemia is not always a visible cancer. I developed anxiety and depression while fighting this disease and struggled with my diagnosis, worried that it would be incurable. Leukaemia Care threw me a lifeline and offered me funded counselling. This gave me and my partner coping strategies to get through this difficult time.

I have recently found out I am in complete remission, which is brilliant news, although I’m still suffering with the side effects from treatment. I’ve developed arthritis and joint pain, and short-term memory loss is a problem. The leukaemia I have is incurable unfortunately, but I should hopefully get some time in remission.

I’m hoping to eventually get back to work and have started making plans for the future, having recently made big changes by becoming vegan and following a plant-based diet. Without the constant support of my family and friends, I would never have got this far.

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