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Patient Perspective: Understanding my diagnosis

written by

Leukaemia Care, Charity

  • Vickie

When I was first diagnosed with chronic myeloid leukaemia (CML), I have to admit that I did not understand it at all.

When I was first told it was cancer of the blood, I was confused. My haematologist said the blood test I did at 21 weeks pregnant had come back abnormal, and explained, “Looking at it, you have CML.” I had to ask him, “What is leukaemia?”.

The doctor continued to explain what it was in medical terms, confusing me even more. He was going on about the Philadelphia chromosome, and said he would need to do another blood test the next day. I was lost. I went home confused, thinking only old people get cancer, not a 33-year-old!

I went back to the hospital the following day and saw the same doctor . He did say the results had come back the same as the first blood test and that I did have CML. I thought perhaps they had got it wrong, but of course they hadn’t.

From what I can remember, he tried explaining the Philadelphia chromosome, saying it was abnormal and producing leukaemia cells. He said it was called the Philadelphia chromosome because of two American scientists who discovered it at their facilities in Philadelphia. He also said the leukaemia affects my white blood cells, which is to do with my immune system, and that it would be a tough journey.

He said there would be a lot of support and I should ask any questions I had. I did ask if I was going to die, but he said he couldn’t answer. He also mentioned things like polymerase chain reaction (PCR), but still I am not 100% sure what some of these medical terms mean. I do ask and he explains, but trying to remember can be a nightmare.

As I was 21 weeks pregnant at the time, I could not take medication. He kept asking if I wanted to keep my baby and I said yes. He then gave me a leaflet and said, “Read through that.”

Still, I did not understand my diagnosis; nothing else was much explained.

I googled my illness, trying to understand it more. I also got lots of leaflets and booklets.

It was explained well, but it was hard to understand. However, maybe that was partly due to the shock.

I have had it now for seven years. There are still bits I don’t understand about my CML, and bits that I now do understand. Now and again I do still google it, and also get new booklets.

It’s hard to understand, but once you research it yourself, it makes more sense. I don’t like complication, and I find that researching it myself means I can put it into my own words. Now, when I don’t understand some of the words the doctor uses, I do ask if they can explain it any easier. I always ask questions, and sometimes even repeat myself, to make sure I do understand.

Leukaemia CARE are the only charity I deal with. I should be able to ask any questions I have and get the support I need. Sometimes, seeing the doctor, you feel you have to hurry up as the patient room is always full.

Don’t get me wrong, the doctors are great. You can ask questions and they do reply. I do now feel there should be more support in the hospitals, face-to-face. I have had my CML for seven years now, and sometimes feel because I have had it for so long, I don’t need any support. But I do, and so I believe there should be more help and support regardless of how long you have had it, or whether you’re still undergoing treatment or in remission.

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