Julie Lewin

Julie Lewin is a longstanding volunteer for Leukaemia Care. She began volunteering for the charity after she was diagnosed with acute myeloid leukaemia in 1997 at the age of 27. Here, she recounts her diagnosis and treatment, and shares how she’s doing now.

In January of 1997, at the age of 27, I had just returned from a skiing holiday and I started to feel unwell with cold-like symptoms. As I was training for the London Marathon, I decided to see my GP. The GP commented on how thin and pale I was and sent me for a blood test.

On Saturday 25th January, I went for that blood test as a bruise had appeared that I could not explain. Within two hours, I got a call from an on-call GP asking me to go back to the hospital for further tests. On arrival, a doctor kept telling me there was something wrong with my blood and more tests were needed.

I then said, “Please just tell me what you think it is,” and then the doctor said, “We think you have leukaemia.” My life changed from that very moment.

A consultant came early evening to speak to me and my parents and confirmed my worst nightmare. Early Sunday morning an ambulance took me to St. Barts as my disease had gone too far to be treated locally. More tests were done, and a team of doctors came and said that I did have acute myeloid leukaemia (AML) over 90% in my body. My treatment would be very aggressive and if all went well in April, we could talk about a full stem cell transplant.

I stayed in Barts as an in-patient only being allowed to go home for a day at a time. My chemo was very aggressive, and I was very weak most of the time.

In April, if my world could be shattered again, it did. The doctor told me my own bone marrow was going to be used in the transplant so the treatment would be even stronger, which meant that I would not be able to have children. At the age of 28, to me it was the worst news ever. It took me three weeks to sign the consent form as I had no other option.

On 12th May the transplant started, and it took two days to harvest my bone marrow. Once that was done, chemo and radiotherapy started. I could not have visitors other than my parents for a month.

Finally, on the 26th June, I left Barts well and in remission, returning as an outpatient first weekly, then monthly. I still see a consultant yearly to this day. I am now 50 and have been married to Peter for 16 wonderful years. My health is okay with some issues, but I’m alive.

I have been a Leukaemia Care volunteer for 15 years and the lovely Anne Ashley was the first person I spoke to help me.

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