Stay connected! Share and follow:

Leukaemia CARE Careline

We're here to talk | 24-hours a day

08088 010 444

FREE from landlines & most major mobile networks

Nicholas Priest: Understanding my CML

written by

Leukaemia Care, Charity

  • Page 16-18 - Nicholas

My story starts in early June of last year, when I was scheduled to have a total knee replacement. At the pre-surgical assessment, two weeks before the planned surgery, I had bloods taken. I was informed the following day that my white blood cell count was very high. Because of that, my surgery had been postponed, and I was referred to the haematologists for investigation.

I had a consultation with my GP, who told me she had been in touch with the haematologists, but was very reluctant to let me know what they thought it was. I eventually managed to prise out of her that it was strongly suspected that I had chronic myeloid leukaemia (CML).

She said the haematologists at the local hospital would look after me, and all would be explained when I had my initial consultation with them two weeks later.

Looking back, I had been unwell since the beginning of that year. I was flattened by a virus for two weeks in January.

That was followed by a heavy cold, then laryngitis, another heavy cold, the flu and so on. I suffer from chronic arthritis and before I was diagnosed with CML, it had got a lot worse with my feet, knees, hips and hands being especially painful and stiff. I was also constantly tired and had no energy. I just put these things down to working too hard and my age catching up on me. Put them all together though, and they are all symptoms of CML.

Being informed that it looked as if I had cancer was a huge shock. All I had ever known about leukaemia was that lots of people had died from it. Leukaemia Care’s wonderful website explained, in words of one syllable, all about the different forms of the illness, and how each type was treated. As well as being fully informed and also reassured

to a very large degree, it prepared me for when I was formally diagnosed by the haematologists.

At the first consultation, the haematologist explained that he was 90% certain I had CML. That would need to be confirmed with a bone marrow aspiration and biopsy, which I had two days later. It wasn’t a pleasant procedure, but it didn’t last too long.

It was about two weeks after when it was formally confirmed that I had CML. I was immediately started on imatinib. The haematologist explained about all the possible side effects of the drug and I had to sign a consent form.

The imatinib worked very quickly and my white blood cell count dropped from 120 to nine in less than two weeks. An initial side effect was nausea, but that was very soon brought under control thanks to a medication my GP prescribed. Further on, my lips started peeling, and I had some hair loss (not that I had much to lose anyway!), fatigue, tiredness, joint pain and muscle cramps.

I am a member of a number of closed Facebook groups, such as the CML UK group. I joined the groups because I wanted to hear the stories and experiences of others who have CML. I am not really much of a poster on these sites, but I do read all of the posts that have been put up on them. If I do interact with people, I tend to communicate with them via private message. Being a member of these groups let me know I am not alone with this illness, and there are people among the groups who have had CML for well over 20 years.

13 months on since my diagnosis, in spite of the side effects of the imatinib, I manage to work part time in a supermarket, and my days off are usually spent recovering from the exertions of work. I know my new limitations and try to work around them.

I admit I do have bad days, but I get through them. I tell myself that whilst the side effects of the medication do occasionally get me down, the alternative of not taking them would lead to a pretty horrible way of passing on. I also have good days when I actually forget that I have the illness.

My family have been very supportive, as have my employers. My daughter accompanies me to the appointments with the haematologist.

For anyone newly diagnosed, or those who’ve been told they have a big chance of having CML, I would advise them to look at the websites of Leukaemia Care or other charities. There is lots of easy to understand information about CML and the treatments for it.