chat
The start of my CML journey was long and frustrating. I was unwell for up to a year before I was diagnosed. My family kept commenting that I hadn’t been myself and I kept taking myself out of the equation because I was always fatigued. I believed my symptoms had been the result of working too hard and not looking after myself properly, and therefore perhaps exhaustion.
I made an appointment to visit my local GP. They initially thought that these symptoms had been the result of a viral infection. No medication was provided, and I was told that it would pass with time. After a few weeks had passed, my symptoms were still present. I visited the GP again and was sent for blood tests. When my results had come back, the GP asked if I felt okay because my white blood count was elevated with no suggestion to anything other than a viral infection. I was effectively told to be patient and let the infection run its course.
A few weeks after this my family and I took a holiday in Norfolk and I still did not feel right. Towards the end of the week I really started to feel unwell. I asked my wife to take me to the nearest hospital which was the Norfolk and Norwich Accident and Emergency. Again, I had blood tests taken and was once again told I had a bad viral infection.
Off the back of this experience I decided that I just needed to get on with life and give my body time to heal itself. However, things changed when I went on a trip with a friend to Liverpool to watch Everton play football. I spent the night in Liverpool having watched football and been out drinking with my friend. I remember waking up the next morning and my right eye had a strobe light effect.
I thought I had dropped my phone during the evening and distinctly remember tapping the screen in the hope of fixing it.
When I got home from Liverpool, I still felt unwell and now had this issue with my eye. I absolutely knew that something was wrong, despite what the doctor and hospital had said. I decided to seek a second opinion and approached the private GP at my local private hospital in Chelmsford. I had a long consultation with the doctor and had blood taken on the same day. She suspected that it could be chronic fatigue. This was on 28th October 2019. I was called back by the private GP the very next day and told that I must come into the practice on 30th October as they had found something from my blood results. The GP told me there and then that she suspected chronic myeloid leukaemia (CML). It was also my birthday on the 30th October.
In the 24 hours between appointments she had already shared my results with the haematologist at the private hospital and he agreed with her conclusion. It was an odd moment for me. I was obviously in shock, but I equally had a sense of relief that it wasn’t all in my head. Thankfully, the same consultant that the private GP discussed my case with is now my consultant at my local NHS hospital.
The private GP had to refer me back to my local GP so they could do the official paperwork passing me to the NHS consultant. I remember the GP had the cheek to challenge me why I felt the need to see a private GP. I had to wait two days before my hospital appointment. Those two days were probably the worst two days of my life. I made the big mistake of taking to Google to look for my prognosis. In retrospect, a gargantuan error of judgement.
I remember being called into the haematology department for bloods, unaware that if my white blood count had increased between the GP appointment and this blood test I wouldn’t be going home. In fact, I was kept in the hospital for six days. I was prescribed with an oral chemotherapy tablet during this time to stabilise me whilst my bloods were analysed by London Bart’s haematology, who later confirmed my diagnosis. I won’t lie, those six days in hospital were a frightening experience for me. It was all new to me; I had no idea what all this actually meant. My bloods stabilised over the six days and I was eventually sent home. I am so thankful to the Haematology Clinical Nurse Specialists, Jodie Nightingill and Elizabeth Fowler. Jodie was an absolute machine, absolutely clinical and really took care of me.
I’m not afraid to say that my mental health was impacted by my diagnosis and the week I spent in hospital. I think it’s crucial that, if you are going to get better, then you need to look after your body and your mind. I have been having weekly counselling even now, which I find very beneficial.
Fast forward to now, tt transpires that on diagnosis my BCR-ABL ratio was 98.051%. I commenced nilotinib 8th November 2019. So far, I have responded well with my latest BCR-ABL results being 0.081% as or 3rd May 2020 with normal blood results.
I feel that my case really highlights why it’s so important to diagnose leukaemia early. I was ill on diagnosis, but if it had been left much longer, I would have become extremely unwell. There needs to be more awareness of the symptoms associated with this illness generally, but urgent education is needed at the GP level. This condition is chronic by definition, so there is every opportunity to catch this early. Delays in diagnosis worsens the outcomes for patients.