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I was diagnosed with acute myeloid leukaemia (AML) in September 2017. I knew I wasn’t feeling very well, but the idea that I had leukaemia was very scary.
Before I was diagnosed, I had acute back pain, joint pain, a cold, weight loss, queasiness and an inability to eat properly.
I immediately went to A&E in July who told me it was soft tissue damage and recommended physiotherapy. The initial GP visit following A&E in July confirmed suspected soft tissue damage, so referred to physio. The subsequent GP visit suspected juvenile arthritis (as pain had spread to shoulders and hips) and made a referral that was never used. I visited another GP mid-August as I was unwell and was told to take Calpol and Nurofen. I then visited another GP following weight loss and she referred me to Chichester Hospital the same day. The hospital suspected Lyme disease, then a kidney infection. An MRI of my lower spine showed a lesion which was followed two days later with a full body MRI at Southampton, which indicated a need for a bone marrow biopsy two days later; this led to my diagnosis.
I spent five months living in hospital in Southampton having four rounds of chemotherapy through my central line. Each round I suffered badly with sickness, mucositis and febrile neutropenia, so it wasn’t much fun.
During my treatment I had one central line, four NG tubes (which were the worst!), five bone marrows, 19 scans, 21 transfusions, 60 individual doses of chemo, 213 bloods taken, 747 antibiotics and additional medications, and 837 eye drops and mouth washes.
I’m now in remission after treatment finished February 2018. Following treatment, I have to have all my childhood immunisations re-done. These are going to be done at the GP and I feel nervous about this as they have little understanding about my treatment or my condition.
The bits I found the hardest were: being away from home and having our family split up; being sick a lot; not seeing my friends as much as I would have liked because of the risk of infection; transferring to my local shared care hospital towards the end of treatment; trying to fit back in with normal life and when I don’t really know what normal is anymore; and not knowing anyone.
The positives were: the people who worked on the ward in Southampton, and the wonderful team who look after me in Chichester now as an outpatient; meeting new people and making new friends; finding out a lot about myself and learning to appreciate what I’ve got.