Jan Barnett

Jan Barnett’s leukaemia symptoms were mistaken for a heart problem, but thankfully Jan was diagnosed just in time to save her life. Here, she tells her story.

In May 2016, I started to notice a change when I found I couldn’t run to catch a train, but I wasn’t too concerned. I thought I was very unfit!

I started losing weight too, but had tried to lose a few kilograms, so didn’t relate this to anything untoward. I also became increasingly breathless and then got central chest pain. I couldn’t walk 10 minutes to the train without stopping for a rest.

Disregarding the weight loss, I think it was a few weeks before I went to my GP. This was when I really started to feel ill and couldn’t function at work. I was becoming increasingly tired as well. One afternoon I fell asleep at my desk!

My GP thought I had a heart problem, and after an ECG he said he wanted me to go to hospital then and there. I refused as it was a Friday afternoon and told him no one would do anything over the weekend. He made me promise to call an ambulance if I got worse and to come back on the Monday, which I did. By then I felt very ill, had developed a temperature of 38C and rigors. I don’t know why, but I noticed that my feet were really white, and I told my GP I thought I was anaemic. I went to the local hospital across the road and had bloods done.

A GP from the surgery rang me at 4.30pm the next afternoon and told me I had to go to hospital immediately, that my admission had already been arranged and that I probably had leukaemia. She was trying to be diplomatic, but I asked her to just tell me. My HB was 60. The haematologist at the hospital notified the GP surgery of my blood results, but I received a definitive diagnosis of acute myeloid leukaemia (AML) in hospital.

I can’t remember feeling shocked or numb or anything like that, I was so sick by then I couldn’t relate to anything much. I was admitted to my local hospital, as my HB was then down to 50. I could barely walk and was vomiting. I had blood transfusions and a bone marrow biopsy, and a PICC line.

The staff in the haematology ward there were so lovely. By then I really was shocked as I never imagined anything like leukaemia happening to me. I was told I was going to be transferred to the Royal Marsden at Sutton, but there were no beds. I finally went there a week later and commenced chemotherapy and a drug trial a few days later.

I can honestly say I have never been so sick and weak. I had a massive reaction to platelets. I also became quite symptomatic as soon as my HB started dropping. Everyone I knew thought I was going to die, and a couple of younger friends started crying when they saw me and my bald head! I was more upset for them than for me. I did have one day when I had a huge crying session, however I can honestly say that my lack of hair never worried me, except for the cold!

I continued to have multiple episodes of chest pain during my treatment. I was in hospital the first time for five weeks altogether and had lost 17kg in weight. After I went home for a rest, I could hardly write and had to get a walking stick as I thought I was going to fall over. I tried to go out but could only manage about 20 minutes or so. Even having a shower and getting dressed was a huge effort.

I was anxious about going back to hospital for further chemotherapy after the experience of the first round, but it was not nearly as bad, although I still had to have blood transfusions and platelets. During all of this, I had three episodes of sepsis, which is not unusual for patients with severely reduced immune systems.

After all my chemotherapy was finished, I continued to have angina and collapsed at home. I was taken to hospital and went to the coronary care unit where I was informed I had a heart attack. I had to have an angiogram but didn’t require any stents. The angina has gradually settled over nearly two years, and I only have occasional attacks now.

During my time in hospital, the staff at the Marsden were absolutely wonderful to me, every single person. All the staff, my, consultant, the other doctors, nurses, and auxiliary staff were so professional. Not only that, but they were the kindest, most empathetic people you could meet, and I will always be so grateful to them.

I have put the weight I lost back and feel a lot better. I was really affected by chemo brain and was really upset when I couldn’t remember things. I still have some memory problems but have accepted that it’s just how it is now. I still feel quite tired at times but all the other things I had such as pain in my liver area and reflux have largely gone now.

The most upsetting thing for me at the time was that after my 12 months sick leave I had to retire from my job which I really liked, even though I was above retiring age. I am used to it now and have started to enjoy retirement.

I went into remission after the first round of chemotherapy in July 2016 and have been in remission since. I realize that I am very lucky indeed to be diagnosed so quickly and commence treatment. When I read about how other people have been disregarded and sent home, even after multiple visits to their GP, and they haven’t even been sent for bloods, it is evident that there needs to be a lot of work done to educate GPs and others to be proactive. I was a nurse and realise the importance of listening to patients.

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