Share your story: your experience of being diagnosed

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Hi @Pip61

I’m Paul, I’m a Blood Cancer Uk Ambassador and I’ve been living with CML for 6 years. I’m sorry your husband has had this diagnosis but I’m glad you’ve reached out, when you first receive this diagnosis it’s very scary and it’s a great shock. It DOES get better. For the vast majority of patients (and I do mean vast) this will be a chronic condition that we live with and your husband will be able to lead a relatively normal life with pretty much a normal life expectancy.

You will have all sorts of worries and questions at the start and your emotions will be all over the place. Try not to worry about the disease progressing, if the clinical care team were worried about your husband’s blood results they would have had you in sooner. The Bone Marrow Biopsy (BMP) will determine the stage of the CML at a molecular level and it is highly likely your husband will be treated with a daily tablet called a TKI (Tyro Kinease Inhibitor). The first measure will be that the white blood count comes down to normal and then the monitoring of the molecular level starts. This will take quite a long time, years so don’t expect very quick results and don’t worry about them.

In the early stages getting used to the treatment and any potential side effects will be your main focus. Many people don’t have side effects which is great; I do but they are manageable and I’ve been working full time since diagnosis amongst other things.

I don’t want to bombard you with info at the moment but some practical suggestions which might help you through the first few weeks and months:

  1. Try and keep a notebook to hand to write down any questions or concerns you have as they occur to you and take it along to your appointments. It’s often easy to forget when you’re at the appointments and having them to hand will be easier for you. You’ll also be able to capture key info from the appointments without having to rely on memory.

  2. If someone can attend the early appointments with your husband it will be useful to capture the info because as a patient your mind can get a bit foggy especially in the initial stages when you’re still in a bit of a shock.

  3. You will be allocated a Clinical Nurse Specialist (CNS). They are just wonderful, don’t hesitate to contact them if you’re concerned about something or need specific info. Do use them.

  4. Try not to think too far ahead, concentrate on the next couple of weeks, then the next couple. It’s a long journey and quite different to other cancer journeys. It took me a year to get comfortable with the ‘battle rhythm’ of treatment. Be mindful that this can have an effect on emotional and mental health wellbeing too and there is lots of info and support on that as and when/if you need it.

I think I’ve said enough for now, you can get information overload but if I can support in any way do get back to me. You’re not alone and there is a CML Facebook group https://www.facebook.com/groups/cmluk which I found useful early on in treatment, but it’s entirely up to you how you engage with others.

Good luck with the BMB and the next appointments.

It will be ok.

Paul

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