Dorthe Swaby-Larsen

Even when working for the NHS, symptoms of leukaemia can still go unnoticed. It wasn’t until Dorthe’s colleagues organised a blood test for her that a diagnosis of acute promyelocytic leukaemia was confirmed. She talks about her story here.

I am an A&E nurse with 24 years’ experience. In 2014, I was at work and my eye started bleeding. It looked very alarming and my colleagues persuaded me to have a blood test as I was also very tired, but I was working about 60 hours a week in a new job. I also had some bruising, but I had been moving furniture, and I did have some bone pain which I didn’t quite understand but I wasn’t concerned. I was 50 and in excellent health.

Well, that day my life changed forever when my colleague had to tell me he thought I had leukaemia as my blood test was very abnormal. Leukaemia, I thought, only happens to children and the older population, not me. Even when the nurse asked me where my ‘overnight’ bag (that should be called ‘over weeks’ bag) was, I was still in denial.

I had made a GP appointment a few days earlier as I thought I might be anaemic due to the tiredness, but my appointment was still a week away. I initially didn’t want my colleagues to do a blood test as I never wanted to use my workplace as a patient, but now I am grateful he did. Otherwise, I might not be alive today.

The following weeks are a bit of a haze as I was very ill. I was given a diagnosis of acute promyelocytic leukaemia (APL) which is a type of myeloid leukaemia. Overnight I went from being a nurse to a patient, but I made a decision to just trust the doctors and nurses completely as I didn’t understand my illness and I didn’t want to be my own nurse. The care I (and my family) received was fantastic. The team absolutely saved my life. My clinical nurse specialist (CNS) became my life line and helped me live again and taught me to trust that my body will recover.

Once I started to feel better, I could see the toil this was taking on my husband. It was so scary and hard for him and very tiring working and visiting the hospital. I had to ask him not to come every day but take turns with a good friend and my sister-in-law, as I was in isolation so visiting was limited. My family lives in Denmark, but with the aid of Facetime we were able to keep in touch daily and, of course, they also came over to visit. It must have been really hard on them (especially my mum) being so far away.

One of the doctors I worked with came weekly to see how I was and report back to my colleagues. I wanted everyone to know what had happened to me. I find it too often that people don’t like to talk about the big ‘C’ word. In fact, it actually took me about two years to call it cancer and not leukaemia.

I had the ‘usual’ side effects from the chemotherapy but quite liked my bald look. The thing I didn’t like was the restricted diet while on chemotherapy and I kept losing weight. At one point I cried as I couldn’t put on weight but, in between my tears, I said that one day I would cry over having too many pounds on me (that is where I am at now).

I was so ecstatic when, 259 days later, I walked back into my job as a Deputy Head of Nursing in a busy A&E department. I think most people have heard of the winter crisis in A&E and I must have been the only nurse in England begging to come back to the crisis.

However, my joy was short lived as only a few weeks later I had what is called a molecular relapse. The doctors found the early stages of the APL coming back. I had no symptoms, but I needed treatment again. This time it was 62 doses of arsenic (yes, you read right) over eight months. I was devastated to begin with, but the team told me that most people tolerate the arsenic very well and that it doesn’t have all the nasty side effects of chemotherapy. Thankfully, I also tolerated it, and having had a PICC line inserted (a long tube in my arm going into large vein just above my heart), I was able to carry on working in between treatment. My workplace was fantastically supportive, or I don’t think I could have done it.

I didn’t like the NHS covers for my PICC line, so my mum got busy sewing some for me. Some matched my uniform and some of them matched my everyday clothes. It became a great talking point for other patients and I used my experience to talk openly to other cancer patients about the benefits of PICC lines.

For the past two and a half years I have been in remission, but my team still keeps a good eye on me. I have six-monthly bone marrow tests which I find reassuring. I genuinely feel I have beaten this and the future is good.

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T-cell acute lymphoblastic leukaemia (T-cell ALL)

T-cell acute lymphoblastic leukaemia (T-cell ALL) is an acute leukaemia in which too many abnormal T-cells are produced in the bone marrow. T-cell ALL is a more aggressive subtype of ALL compared with B-cell ALL. Within these webpages you will find out what it is, the symptoms to look out for, how to diagnose it and treatment options.

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