I am a busy working mum; I work full time, do a lot of charity work, am a youth football team treasurer and I have a husband and two boys at home, so having a few random bruises appear didn’t bother me until one of them had a large lump in it.
My husband worried more, and my mum at the time was a pharmacy assistant. She said that this wasn’t normal so made me go to the GP – I went to stop them nagging! My GP thought I may be starting the ‘change’ so suggested I had some blood tests done to rule that out or confirm it. My GP didn’t suggest anything else and didn’t suggest the blood test was urgent, so I left it until the next day.
The following morning, on Saturday 1st July, I went and had the blood test completed at 8am and that evening went with my husband to a friend’s wedding. We had a lovely evening but left around 10pm because I felt so tired. Looking back now I had been tired for about a month but put it down to my lifestyle.
Unbeknown to me, the hospital had been calling me all afternoon about the blood test results, but they had been calling an old number listed for me. On Sunday we were preparing to leave the house for a football tournament with my youngest son when the doorbell went. I was shocked as I opened the door to an on-call doctor who wanted to talk to me about my bloods. I remember thinking that I didn’t think this kind of visit was normal. He asked how long I had felt poorly for and I remember saying I’m not poorly. He said the blood test showed my white blood cells were at 194 and he expected me to be a poorly person, but this meant nothing to me, so I asked what they should be and he replied between four and 11.
I remember sitting down at that point, and although still not understanding what it meant, knowing that something was wrong. I felt scared. I asked what all this meant, and he said I would need to see a doctor but potentially I could be looking at leukaemia. Hearing those words took the wind from beneath me and I heard my two older children recoil in horror outside the lounge (later finding out they were listening outside the door). At that point that was my only concern – my two boys. What if I didn’t see them grow up, who would look after them? I also thought about my wonderful husband. We had been together for 12 years at the time and I had waited a long time to find him, but what if now I might not get to grow old with him? My mind was a blur, everyone was in tears, but I said right this has to stop, we don’t know anything yet. Although I felt completely numb, I had to be brave for my family!
On Monday morning I contacted my GP and she was great, getting me an appointment the next day with a Dr Hassan at Lister Hospital. On arriving at Lister Hospital, I walked through to the Macmillan Cancer Unit thinking ‘here goes… please be kind to me’. We spent an hour with Dr Hassan, and he confirmed that indeed he was sure that I had chronic myeloid leukaemia (CML) but wanted to take more blood and a bone marrow biopsy. That was awful; the pain is horrid and I literally cried all through it, but a wonderful nurse held my hand and talked to me throughout.
Dr Hassan had some documents and booklets ready to share with me, lots of information to talk to me about and the options that were available to me now. I felt safe with Dr Hassan and those were the very words I said to my husband as we left his room. I had CML yes, but I hadn’t been given a death sentence and that is what I held on to that day and still hold onto today.
I had a course of chemotherapy tablets for the first month and since then I have taken dasatinab on a daily basis. This is the first and only TKI I have tried. I am lucky, I truly feel lucky. Yes, I get tired and I get a lot of bone pain, but I am positive and I really think that helps me. Some people think ‘oh why me’. I never did, I just faced what I had to and I get on with it. There are many people in a far worse situation to me. I take each day as it comes but honestly wouldn’t be where I am today without my loving family and close friends.
However, it’s been a rocky road and an isolating one too because CML is so unknown, but I remain positive and a full-time worker who works for a very supportive employer. There are support groups on social media, but I have felt very lonely. I am hopeful that we can get some support groups close to home this year so fellow CML patients can talk and share their experiences.
Leukaemia can happen to anyone at any time. Raising awareness could save lives, so be leukaemia and blood cancer aware, share the signs and symptoms with everyone you know. You never know, you might just save someone!