“My story starts in 2017, when I had a flu jab which took me off my feet. I still went on holiday a few days later, but all I wanted to do was sleep; I felt so drained and exhausted by even a minor activity, and I don’t remember that much about the holiday.
After a few weeks, I began to feel a little better, however symptoms began coming to the forefront, such as night sweats. I’d always had occasional night sweats since the menopause and went to the doctor when they started happening more frequently. At this point, I was put on an antidepressant as I was told it could help with post-menopausal night sweats, but they really did nothing for me.
Meanwhile, the fatigue was building up again, and most days when I came home from work I had to sleep before I could do anything else. I missed several social events because I was too tired to go to them.
As well as the night sweats and fatigue, I was bruising easily, especially on my back where I couldn’t see it. I’d had several chest infections and was so fatigued to the point of being ready to collapse.
In early May 2018, I suffered a cotton wool lesion in my right eye and arranged an emergency appointment with my optician. They sent me straight to my GP with a letter saying I needed to be seen that day as it could be an indication of something serious.
When I saw the doctor, their view was that it was just one of those things and I didn’t have anything seriously wrong with me. The letter had suggested uncontrolled diabetes, high blood pressure or leukaemia as possible causes, but the GP decided I didn’t need blood tests as it was unlikely to be anything to worry about.
Over the next couple of months, I rationalised my symptoms as being related to my age or the hot weather; everyone was saying how hot it was at night, how sweaty it was in bed and how tired they were because they couldn’t sleep. I was the same. I was moving furniture and accidentally knocked myself and blamed the bruising on this. The pink dotty rash on my legs was blamed on using poor-quality cheap razors to shave my legs. I went and bought quality razors – the rash didn’t go away and neither did the bruising.
Finally, in mid-August 2018, I had a silly accident whilst putting on a sock, and I tore the iliotibial band in my right thigh. The pain was so bad I collapsed at work, and they had to send for an ambulance. It was in A&E where the fun began…
My blood tests came back looking odd, so they did them again, and they still looked odd, so they did them a third time. Whilst waiting for the results, the junior doctor looked at my entire body and started asking me some questions about domestic abuse and how I got all the bruises.
Eventually, he came back and took one more lot of blood, which he said was going to be looked at by haematology themselves and that someone from there would be coming to talk to me. I was totally clueless; the thought of leukaemia never crossed my mind. I thought, “I’m probably anaemic, that’s why I feel so tired!”
So, when five people from the haematology team turned up to surround my bed and tell me I had chronic myeloid leukaemia (CML), I was totally bewildered.
Five days in the hospital later having had a bone marrow biopsy, a CT scan, an MRI and countless blood tests, the diagnosis was confirmed, and I started treatment on imatinib a couple of weeks later.
I am now on my third treatment, nilotinib, which has been effective and I’m now at major molecular remission (MMR). It’s three years later than the ideal and it’s been a rocky road at times, with hospital admissions for sepsis and pleural effusions, plus hours spent in A&E or the haematology waiting room. Now, I just have to adjust to what the haematologist calls “the new normal”.
My hope is that at some stage, I will be able to try treatment-free remission (TFR) or at least reduce my dose level to give me a little relief from the side effects, which have been quite challenging at times. Treatment and MMR isn’t all sweetness and light but as I tell myself every day, it’s better than the alternative.
Before my diagnosis, I didn’t think there was something specifically wrong, and I had only been to the GP for a few minor issues in the months before my diagnosis. Looking back at the pattern of those issues, it was a perfect fit for leukaemia.
If I had known about the symptoms of leukaemia, I’m sure I would have been diagnosed much earlier. I would have been able to have a much more informed conversation with my GP, because at no point did I ever present my GP with a full list of my symptoms. My GP didn’t ask me about other symptoms either, or even think that some issues (like my eye problem) were anything to be concerned about, so I think GPs need more knowledge too.
I also think there needs to be a mindset change from GPs, as the current approach feels like, “It’s not likely to be a serious cancer,” which leads to unnecessary delays in diagnosis and treatment. A more proactive approach, along the lines of, “Let’s rule out the serious stuff right at the start,” would, I think, promote early diagnosis of leukaemia and result in much better treatment and outcomes for patients.”
Helen’s symptoms of leukaemia were:
• Night sweats
• Repeated infections
Are you currently dealing with similar symptoms to Helen’s? If so, contact your GP and ask for a blood test.
For more information on our Spot Leukaemia campaign, our goal and how to get involved, head over to our official Spot Leukaemia website at www.spotleukaemia.org.uk
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