For many people, chronic myeloid leukaemia (CML) is a condition you can live with for many years.1 Despite it not being curable (although some CML experts consider stopping treatment a practical cure), it can be managed for a long time if you take your medicine as directed.2 While it can be a relief to find out CML can be managed in this way, it’s also normal to experience lots of other emotions when you’re living with the condition.
Lots of people say life feels different when they’re living with CML. For many, everyday life can take on new meaning. You may find you start to appreciate things you’ve always taken for granted. You might think more carefully about who to spend time with and what to do. On some days, you may long for the time you didn’t have to think about having CML. It’s normal to sometimes feel angry you have the condition and to wonder ‘Why me?’
Living with CML means taking medicine to treat it and going for regular hospital appointments and tests.2 This can mean it’s hard to put your medical condition out of your mind day to day. Some people find it difficult to get on with work, family life and socialising in the same way they did before their diagnosis.
This can be one of the most challenging things about having CML. Your TKI may put your CML into remission and may be effective for a long time.3 However, there are no guarantees, and this uncertainty can mean it’s hard to relax, even when treatment’s working well.3 Although your doctor may reassure you there are other options, it’s normal to feel anxious and unsettled. You might also find that you are having trouble sleeping because you are feeling anxious about your CML, especially around the time of diagnosis.
Open up. It can be very helpful to share your emotions with a trusted friend or with a professional psychologist or therapist (your healthcare team may be able to recommend someone). However, not everyone wants to talk and that’s ok too.
Make time for yourself. Try to make sure you regularly do things you enjoy, helping you relax and find pleasure in daily life. This could be anything from baking, to walking in nature or visiting art galleries.
Focus on the present moment. When you start worrying about the future, try to bring yourself back to the here and now. Remind yourself nobody knows what’s going to happen in the future. Even doing this for a few minutes each day can help you feel more peaceful.4
Celebrate the positives. Focus on positive changes in your condition, no matter how small you think they might be. Having lots of tests can be draining after a while, so if your PCR improves, or your blood count is good, then allow yourself to feel good about these positive results.
Be more active. Exercise is proven to help boost your mood.5 Do whatever you enjoy, whether that’s walking, dancing, yoga or swimming. Speak to your healthcare team about what would be suitable for you.
Share concerns with your doctors. If you have worries about your treatment, side effects or anything else about your condition, speak to your healthcare team. They may be able to put your mind at rest, or make suggestions that could help. And having information can help you feel more in control.6
It’s normal to feel down from time to time, especially when you’re living with a long-term condition like CML. But if you start feeling like you can’t cope or can’t enjoy life, and you have those feelings a lot of the time, you may have depression. Your doctor can support you. This online quiz might help you work out whether may be depressed.