My raised white blood cell count was picked up by my GP following an annual health check. I did not go in and see him about any symptoms. When he got the test results, he asked me to come in and see him as the WBC count was only slightly raised and he thought I may have a minor infection or gout. I advised him I was feeling fine and he suggested a re-test which showed a slightly higher WBC count (still below 40) and then referred me to a kidney specialist as I had a minor kidney infection earlier that year.
I saw the nephrologist who conducted his own tests and, when I saw him regarding the results, he advised that my kidneys were okay. He also checked my spleen and under my armpits, and he suggested that I see a haematologist. This was the first indication I had that something may be wrong.
I saw a haematologist at the Alexandra Hospital in Cheadle who took another set of blood tests and told me that it may be chronic myeloid leukaemia (CML). I then looked into what CML was. I was initially scared but the information that was available made me realise that I was extremely lucky that there were new treatments called TKIs and that they had a very good success rate. However, obviously at this stage I was not even sure if I had CML.
When I saw him a few weeks later, he told me that as the initial appointment and blood tests were on a Friday, he had made a mistake and that my blood did not get to the lab in time to be tested and that someone should have called me to get it tested again. He also told me that he was quite sure that it was CML.
The news hit me quite hard, but just as I left the appointment, I had a call advising that my wife’s grandmother was seriously ill in hospital and that she did not have long left. I spoke to an aunt who was a former senior pathologist at the Manchester Royal Infirmary and the Christie, and she then arranged an appointment with Dr Michael Dennis at the Christie clinic who was a specialist in CML.
After the mistakes by the initial haematologist, I did not have confidence in him, but as soon as I met Michael Dennis and his nurse I was filled with confidence. He explained that he was confident that I had CML but to be sure he had to perform a bone marrow biopsy in a couple of days and then see me the week after. In the follow up appointment he confirmed that I did have CML and that I would be starting on imatinib immediately.
I was determined not to stop or let the CML define my life. Emotionally it was hard as I had just turned 40 and had a family to support. I had weekly blood tests initially and once I knew the medication was working, I decided to tell my close family and children.
Although I have tried to remain positive, it is still quite mentally tough coming to terms with the limits that my body now has. I get quite exhausted and also sometimes suffer from “chemo brain” where, although I want to do things, I find it difficult to focus and motivate myself and also get frustrated with myself. My hips and other joints are constantly painful and sometimes simple things like walking up the stairs takes me a lot longer. These are all side effects of the medication. Saying that, I still try to stay as active as possible and play football regularly and go to the gym a few times a week. When I feel down, I remind myself how lucky I was that my illness got picked up by chance before it had manifested itself and got out of control. I am also grateful that my GP did not dismiss the slightly raised WBC count as a minor infection and insisted on further investigation. Had my illness not got picked up so early, I would probably not know what the symptoms were or taken them seriously. In today’s society, it is easy to put these down to just being exhausted or run down when the real reason could be much more sinister.
Exactly a year after diagnosis on Sept 29th 2018, I was told that my test results were showing that I was testing negative for CML. A test three months later showed trace signs of it again, but my latest result was, again, negative. I will probably be on treatment (imatinib) for the foreseeable future.