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Around October 2018, I was on and off feeling quite nauseous. I didn’t really think much of it until about five to six weeks later when a few colleagues of mine said I should maybe see a doctor just to get checked out.
I saw a doctor and they initially didn’t know what was wrong with me. They thought the nausea could be a sign of pregnancy, but after ruling this out they asked me to go back the next day for a blood test as they had no idea. I went at 9am for a test and by 5pm they called. This was probably the worst part of my diagnosis as I was sat at home alone, getting ready for a night out when the doctor called and said, “Your white blood cell count is really high and we think you have leukaemia.” I still look back now and think how horrific that was to hear on the phone and whilst I was alone.
As you can imagine, I was shocked and phased in and out of the conversation from then. I remember him saying letters like CLL or CML but until I googled them later on, I wasn’t sure what he had said. He told me that the hospital would be in touch within the next two days. This was incorrect; fast-track from the hospital is within two weeks, so I spent a week and a half worrying what was happening to me until it was 100% confirmed.
Since that first meeting with the consultant and having the conversation, the next few days were being me poked and prodded for tests. I had to straight away have the bone marrow biopsy, possibly the worst pain I have ever experienced in my life; however, this confirmed that I was at the first stage (chronic) of chronic myeloid leukaemia (CML). I also had to go for an ultrasound to check if my spleen was enlarged but luckily it wasn’t.
I think I was pretty lucky with catching it so early; however, we have no idea how long I had this for. It’s been quite tough physically and emotionally. At the start I just phased it out – I did what I needed to do but other than that I didn’t think about it, didn’t really speak about how I was feeling other than if I felt sick or not. I think now that I am six months in I am finally starting to deal with this news. I am quite a private person when it comes to talking about my feelings so I tend to just shut people out and deal with it on my own which can be very frustrating to my family and friends.
I am currently still undergoing treatment, taking imatinib (Gleevec) once a day. Everything seems to be stable and I take this at night just as I’m going to sleep so that I sleep through most of the side effects. If I am lucky enough to go into remission and stay clear for two years, I can then maybe try coming off imatinib. However, with it being a chronic condition, I could be on the tablets forever. I also needed to take treatment straight away, so, unfortunately, the option of freezing my eggs wasn’t available and this has taken an emotional toll.
At the time of my diagnosis, I thought the only symptom I had was feeling nauseous. Once being diagnosed and looking at other symptoms, I realised that I also had the night sweats (which I just put down to being hot) and also weight loss and bone ache (which I put down to going to the gym).
The Spot Leukaemia campaign is massively important. Although I have this condition, which isn’t lucky, I’m also very lucky to have found this so early and I can take a tablet a day rather than having to have full chemo. I would dread to think of the pain.