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My symptoms before diagnosis were fatigue, weight loss, a dry persistent cough and a sore spleen, which I didn’t at the time know was connected to chronic myeloid leukaemia (CML). I couldn’t sleep at night for the pain. I thought I had a gluten intolerance and I went to the doctor in February 2019 with this. I didn’t mention about the other symptoms as it was the winter so I thought the cough was normal; the weight loss wasn’t too bad as I needed to lose a few pounds, and the fatigue I put down to work as I got up at 5am every morning. But after diagnosis in the August of that year, my consultant thought I had this for at least eight months or more.
I began to worry more when everyone started to say how well I looked with my weight loss when I hadn’t been trying to lose weight. I still didn’t go back to the doctor and just put it down to working so much in my business, and so my husband booked us a holiday to Croatia and thought that would give me the rest I needed. I came back just as tired, if not even more.
A month had passed, and my family started to really worry. I was due a check-up for my blood pressure, so I made an appointment to see the nurse and I mentioned what was going on. She took my full bloods and said to make an appointment to see the doctor. I was out of the surgery for five hours when I got the call to go straight to A&E as my white blood cell count was at 320,000.
I never expected cancer. No one in my family had it. En route to A&E I was hysterical. A consultant phoned me from the haematology department in the car and said, “Don’t worry, it’s chronic not acute.” I had no idea what he was talking about but when I arrived at the hospital, it all made sense.
They couldn’t confirm my diagnosis at A&E without the appropriate tests. I got every test for CML done in two days. I couldn’t believe the amount of blood that was taken from me. By the Friday of that week, it was confirmed I had CML and I started my medication right away. Everything went by in a blur. Everything happened so fast. I was told I was seriously ill, but it wasn’t sinking in.
I will never forget when the consultant told me that I would be on my chemo tablet for the rest of my life. That word ‘chemo’; I was too shocked to take it in. I was waiting to wake up from my nightmare. I cried until there were no more tears and I wanted to organise my funeral.
For the next few weeks after diagnosis it was just a blur. I was given all the information I needed to know about CML, and I was told not to Google. I joined a CML group on Facebook to listen to others who are going through the same as me, which is very reassuring. Cancer does not discriminate, and I was amazed at all the different age groups.
Through the following months I learned a lot about CML, and it made me realise I can continue with life, albeit it will be different. I have been and I will remain positive throughout this and I know I have a long way to go. I am treating it like a rollercoaster ride—some good days and some bad days.
I am still taking treatment, and everything seems to be going in the right direction. However, I had no energy levels and felt lethargic all the time, but I was put on a course of iron tablets and that soon helped. I had lost three and a half stone too and looked gaunt. I’m fine now, but I did get told I looked great even though I was seriously ill. I was told that out of all the cancers, nobody wants cancer, but this was the one to get. We often hear that leukaemia patients are told they “look well for someone with cancer” or that they have a “good cancer”. However, they told me it was so far advanced in research that if one TKI didn’t work then there were others and I’m always optimistic; researchers are trying to find a cure. I really can’t fault the NHS. They were and still are brilliant with me.
There are days that I feel so good, I sometimes forget I have CML. The side effects aren’t too bad apart from cramps in my hands and sometimes in my toes. My skin has changed, and my eyes are dry. I have eye drops and creams. I drink tonic water which seems to help with the cramps, but I do drink lots of water too. This is my new norm and I am learning to live with it.
My view on things have changed since my diagnosis in August 2019. I don’t take things for granted and I spend as much time with family and friends as possible. I ran my own business, Deli Coffee Shop, but I gave that up after I found out my diagnosis. I hope to find something else in the near future that is not so full on.
Lockdown hasn’t been too bad. I have a garden that I can tend to, and my husband bought an exercise bike so on nice days I take it out into the garden. I read a lot, play my guitar, bake lots and I’m learning a new language.
The advice I would give to fellow CML-ers is to keep positive. Continue with life as much as possible and enjoy it to the fullest. Our cancer is controlled and there is so much research into this type of cancer that one day soon, they will find a cure.
It is so important to make people aware of leukaemia, and also I think GPs do not have the resources to diagnose something like this. I put my symptoms down to running a business and menopause. I was wrong and I was so lucky that my doctor spotted something not right and proceeded with full bloods.