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Being diagnosed with chronic myeloid leukaemia (CML) only nine months ago was initially devastating. I considered myself a person who was fit, healthy and well, and as a yoga teacher I was very understanding of the importance of not only keeping the body fit and active but also the mind too.
About six months prior to diagnosis, I started having an ache in my side which got progressively worse. I was taken to A&E where a doctor thought it was a strained muscle, but I didn’t think that was the case as I had done no exercise prior to it starting. It took a further two days to settle down and I then forgot all about it. (Later on, I realised my spleen wasn’t happy and had begun to enlarge).
One month later, I was back in A&E with what turned out to be a macular bleed in my right eye. I was checked for diabetes which came back negative, and my blood pressure was OK so no treatment was given; I was told it would resolve on its own, which it did.
At the same time, I had started to lose weight without trying to. My weight loss was slow at first and I did put it down to being so active during lockdown – lots of walks, yoga and gardening. I never sat still so didn’t really think it was due to anything other than being busy! But my appetite was dwindling too as my spleen started to enlarge. I had night sweats but put that down to the menopause, as I had experiencing them for about six years, and my hips would ache if I did a long walk.
I was about to contact my GP when I contracted COVID-19 and was admitted to the hospital. I was told almost immediately that they thought I had CML after they had taken a blood sample in A&E. The consultant and doctor told me there and then, but to be honest I was so poorly with COVID I didn’t really take in what they were telling me.
When I look back now, and knowing what I know now, it’s so very obvious that it was my CML that was causing all these problems, and it was only by chance that I caught COVID-19 (having been so very careful) that gave me my definitive diagnosis.
At first, I just could not get my head around the fact that it was me that had this, and I felt like I had done something wrong to deserve this – definitely not the case as I was to discover later on into my treatment.
Those first few days and weeks were tough, especially as I had COVID too, and I felt so unwell and weak. It was hard to imagine back then that with the right care and treatment I would make a great recovery and somewhat get my life back.
My initial treatment was done remotely via phone as haematology were not allowed onto the ward. My consultant was great, explaining everything as we went along and answering all my questions and queries, so I knew I would be OK going forward, I just needed to build up my energy, put on weight and tackle what felt like a mountain to climb in terms of my fitness.
For the first three months everything went well; my blood levels were all back to normal, no anaemia or high white blood cell count, and I looked and felt really well, like the old me. But when my three-month bloods were sent off to be analysed more closely, I was told that the amount of leukaemia cells in my blood had not reduced to the amount they were looking for. I had around 31% of the cells and they were hoping to be around 10% or less at this stage.
I was utterly gutted as I felt great and thought I was well on the way, but this was not to be. My medication was changed twice to try and get me on one which would reduce those numbers quickly, but I was allergic to both and reacted badly with facial swelling, rashes and petechiae.
During one of the many visits to see my consultant at this time, more bloods were sent off to the lab and by some fluke the three-month BCR-ABL test was redone by mistake, and it then showed my cell count had reduced to 5.8%, well within the limit for the time frame. I was then put back onto my original meds and left alone for three months to give me some space and time off from all the hospital visits and tests as I was really struggling with getting my head around it all, and my mental health was beginning to suffer as a result.
The team who look after me are brilliant, and I have a dedicated nurse who is lovely and is there for me whenever I need her. Getting a cancer diagnosis is devastating, daunting and downright scary, but there is always someone to talk to at any time and they have a wealth of experience and resources to offer. It makes me feel like I’m not on my own with this. I also have the most amazing family and friends who have looked after me throughout all this; I couldn’t have wanted for more.
I have also found a lot of help via the CML support forum which is a website run by CML patients. There is a vast wealth of info available on there from people, like me, trying to navigate our way through this disease, and I have found answers to all my questions plus lots of support from others going through exactly the same things as me.
I am only nine months into treatment, so it is still early days, and for the most part I feel great. Meds do come with side effects, but some days are better than others. Sometimes I feel nausea after taking my meds, sometimes my eyes are a little swollen and I often get achy ankles but not all the time. I am constantly told how ‘well’ I look, and I’ve had lots of people tell me I got the ‘good cancer’ too!
It is all too easy to ignore slight changes and dismiss symptoms as nothing, but early intervention is crucial in getting the right diagnosis and treatment going forward. I hope my story may just be enough to trigger someone into get something investigated.