One Monday in August, I noticed a huge ulcer on my bottom lip. It was excruciating. I saw my GP on the Friday, had blood tests and was sent straight to hospital.
The ER doctor came into my room and asked me if I knew what it meant if my white blood cells were very low. Then she told me it meant I had leukaemia. I asked when I could go home and she said I couldn’t, I needed to stay in hospital.
Four days later, I started what they call Big ICE, which was really strong chemo for about 10 days. I stayed in hospital for more than a month while my neutrophils recovered. A bone marrow biopsy showed I was in remission. Then I needed Little ICE, but I could have that as an outpatient.
I was told that my best chance was to have a bone marrow transplant, but it would depend on finding a suitable donor. Lots of people offered to help but even my brother was only a 5 out of 10 match, so the Red Cross searched for a donor overseas. By November, they had two male donors in Germany and they were both 10 out of 10 matches.
I was in hospital for a month for the bone marrow transplant and then had weekly check-ups for over three months.
The year after my transplant, I ended up in intensive care many times with complications, including painful ulcers in my throat, a serious bleed from ulcers in the bowel, and severe pneumonia. The doctors aren’t sure whether this was part of graft-versus-host disease or just my body reacting to the high-dose chemo.
I’m a practising artist and when I became ill all my ideas disappeared, all my effort went into surviving. But since I’ve started feeling better, I’ve had a flood of ideas. My work was always a celebration of life, but now it has extra meaning. I do become tired and I have to be careful, but if I pace myself, I can achieve what I want to achieve
Dr Jonathan Sillar, Haematologist, Calvary Mater Newcastle Hospital; Dr Scott Dunkley, Haematologist, Royal Prince Alfred Hospital and Chris O’Brien Lifehouse; Sharon Frazer, Consumer; Dr Robin Gasiorowski, Staff Specialist, Haematology, Concord Hospital; Prof Angela Hong, Radiation Oncologist, Chris O’Brien Lifehouse, and Clinical Professor, The University of Sydney; Yvonne King, 13 11 20 Consultant, Cancer Council NSW; Heather Mackay, Clinical Nurse Consultant – Haematology, Westmead Hospital; Katelin Mayer, Clinical Nurse Consultant, Cancer Outreach Team, Nelune Comprehensive Cancer Centre.
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