With recent advances in medical care, the majority of people with chronic myeloid leukaemia (CML) can expect to live relatively long, healthy lives.1 That doesn’t necessarily mean life will always be ‘easy’, but it does give you the opportunity to experience joy and excitement like anybody else.
While it’s completely natural to worry that CML is holding you back, try to keep in mind that life shouldn’t be about comparing yourself with others – the goals that really matter are the ones you set for yourself, based on what you want and need. We hope the tips here help you to achieve them.
Take things at your own pace
Try to keep your changing energy levels in mind when you’re planning your days and weeks. You’re the expert in what you’re feeling, so make sure your friends or work colleagues understand that there are limits to how much you can get done without totally exhausting yourself. You can learn more about fatigue and how to fight it here.
As we recommend in our starter guide for Young adults with CML, you should try to make the most of ‘good’ days so that you can relax on days you don’t feel as well.
Some quick and simple things you can do include:
- Make a list of priorities for the week – try to find a healthy mix of things you need to do and things you want to do
- Ask for help with tasks that might be extra tiring – you may want to ask a loved one, or reach out to community support groups in your area
- Do some light exercise to build up long-term stamina
- Talk to your doctor about adjusting your treatment to reduce fatigue, or medication to help manage it
When you have the opportunity, you should also try to make time for things that make you happy, whether it’s alone with a hobby or hanging out with friends and family. Find ways to recharge, physically and emotionally, so that you’re ready to face tomorrow.
Be mindful of stress
CML might be under control, but it can still be stressful to have a chronic condition and need regular medical check-ups. That stress can bleed into other parts of your life, so we recommend taking a few moments every day to reflect on how you’re feeling.
Once you have a better understanding of your emotional state, you’ll be able to predict how certain events and actions might affect you. The process of self-reflection and emotional analysis is called mindfulness. It doesn’t come naturally to everyone – practicing mindfulness is a skill you build over time. If you’re interested in trying it, please take a look at our free mindfulness podcasts.
Sometimes, mental health concerns can go beyond everyday stress. If you’re worried about depression or anxiety, you should reach out to your healthcare team for support.
Open up to friends and family
Now you know yourself better, it’s time to let the people you love know you better as well. This is a difficult step for some people, so don’t feel obligated to share more than you’re comfortable with.
Start small, like telling a friend if you’re having a bad day and need cheering up. They may well ask for details, but if you don’t want to explain then you’re allowed to say so. Over time, when you feel ready, you can be more up-front about the reasons behind a low mood.
Keep in mind that ‘opening up’ doesn’t just involve negative feelings: if you’re having a great day, your friends and family will want to hear about that too! Your loved ones can also help you with day-to-day life, by reminding you to take treatment if you forget, or coming with you to medical appointments for moral support.
Depending on your relationship with your work colleagues, it may help to have more frank and honest conversations with them about your job. There may be laws in place where you live that require employers to accommodate your medical needs, such as giving you flexible working hours.
Your healthcare team should be able to provide further information about all the advice we’ve given here. For tips on getting the most out of conversations with them, click here.
Starting a family
Your decision of whether or not to have children will be influenced by a lot of factors. Whether you have made up your mind yet or not, you have probably wondered if and how your CML will affect your ability to conceive.
The introduction of treatment using TKIs has really changed the outlook of a diagnosis of CML for the better by increasing the probability of a normal life expectancy1. Because of this, more and more couples affected by CML are looking into the possibility of starting a family.
Starting a family with CML requires a little more caution and planning than a normal pregnancy, so it is really important that you first speak to your healthcare team. They will help you to make the best decisions for you and your family.
You read more about fertility and pregnancy while living with CML here:
- Efficace F, Baccarani M, Breccia M, et al. Chronic fatigue is the most important factor limiting health-related quality of life of chronic myeloid leukemia patients treated with imatinib. Leukemia. 2013;27(7):1511-9.
- Palani R, Milojkovic D, Apperley JF. Managing pregnancy in chronic myeloid leukaemia. Ann Hematol. 2015 Apr;94 Suppl 2:S167-76. doi: 10.1007/s00277-015-2317-z. Epub 2015 Mar 27. PMID: 25814083.