Helen Swambo

Helen Swambo was receiving treatment for lupus and having two-weekly blood tests when she was told her blood count was abnormal. However, Helen’s results were not followed up on, and it was only when she began experiencing bruising that she pushed for further tests, resulting in her diagnosis of acute myeloid leukaemia (AML). Six years on and in remission, Helen shares her story.

I am under a rheumatologist after being diagnosed with systemic lupus erythematosus (SLE) back in around 2006. My current medications had stopped working for me, so I was tried on another drug (mycophenolate) which needed two-weekly blood monitoring. My full blood count started going a bit crazy, even to the point of neutropenia, but the person I was seeing every two weeks said it was okay and we just carried on.

This went on for quite a while and I was due to go on holiday when my bloods became very low. They advised if I were ill when away to go straight to a doctors or hospital. I went and had a great time, but the day after I got back my legs were covered completely in bruises, they had just come from nowhere. I rang my GP, who advised I needed bloods done ASAP, and as I was going to have my monitoring the following day, she agreed that would be okay.

I had my bloods done, waited for results and a nurse came out to say all was fine and I could go. I said I wanted to see someone about bruising that had appeared overnight. I spoke to someone who said he would send me to a haematologist. I went home and a few hours later had a phone call to ask me to come straight in with an overnight bag. I was obviously a bit worried at this point, but at no point did I think cancer. I was put into a private room and the doctor told me and my husband that he thought it was acute myeloid leukaemia (AML) and I needed a bone marrow biopsy which would give us the results.

That night I had so many platelets that I lost count and I needed blood transfusions. I had the results the following day that it was indeed AML. My husband and my family were devasted and I was in shock. I ended up having a central line fitted that day as there was no one available to insert a PICC, so I could commence treatment straight away. I ended up being in hospital for around four weeks on that instance. I had four cycles of chemotherapy, which took around six months as my bloods were slow to recover. I lost all my hair which was a massive blow to my self-esteem, but I put on a hard façade which to this day I still carry with me. It has changed me a lot as a person in many ways.

I have now been in remission for six years but still see a consultant every six months. After my treatment finished, I wanted to give something back, so started doing voluntary work at the hospital I was treated. I worked within the hospital charity helping out and later was taken on as a permanent member of staff where I stayed for a couple of years. I am still working at the hospital, but I am now back where I started on Ward B4 Haematology  I am now the ward receptionist for three days a week and my selling point for the job was being a previous patient; I can show empathy and know what people are going through.


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