Tap into your support network

Most people need a little help from time to time from the people around them. And when you have a long-term condition like CML, support can be even more important. You might have been living with CML for a long time and feel you don’t need much from those around you. Or if you’re newly diagnosed, you may not yet have thought much about support that might make life easier. But even help with small things can make a big difference. So it’s really worth having a think about how people around you could support you – and how to ask for what you need from them.

Practical support

Your family and friends could help by…

  • Doing small jobs around the home when you feel tired
  • Giving you lifts to hospital appointments
  • Reminding you to take your medicine
  • Preparing batches of healthy meals you can freeze and eat when you don’t feel like cooking
  • Sitting down with you to think of questions to ask your healthcare team at your next appointment
  • Coming with you to appointments for moral support
  • Feeding your pet when you’re at the hospital

How to ask for help

You might feel self-conscious about asking for practical help and feel reluctant to 'burden' family and friends. But it’s likely your loved ones will want to support you – it’s better if they know exactly what you need. And it’s worth remembering a lot of the things that make a big difference to you won’t take much time or effort for others. Make a list of the jobs you need help with, then ask family members what they feel they can take on. That way, you’re not putting anyone under pressure.

Emotional support

Your family and friends could help by…

  • Cheering you up when you’re having a bad day
  • Listening to your sadness and your fears – sharing these feelings can make them feel easier to bear
  • Encouraging you to find more positive ways to think about CML and your treatment
  • Motivating you to look after yourself well – for example, by being an exercise buddy
  • Taking your mind off CML by suggesting fun things to do together

Opening up

Most people living with long-term conditions like CML have emotional ups and downs. It’s normal to sometimes feel low, angry and tired, and to worry about the future.1 You may feel guilty about sharing these feelings with those close to you, and want to protect them from your low moments.

Sometimes, friends and family may find it difficult to ask you about how you’re feeling. This doesn’t necessarily mean they don’t want to talk – they may not know how to start. If you raise the subject, they’ll probably feel glad you’ve opened up to them and may find it easier to talk about their own emotions. Let them know you’d like to share what’s happening and how you’re feeling. The CML Support Group has a list of books that may help.2

Struggling to open up to those close to you? Joining an online group such as the community at CML Support may be helpful. Members will understand what you’re going through and may also be able to suggest ways to have conversations you find difficult. Or if you prefer to speak with someone one-on-one – you may be able to see a counsellor as part of your healthcare team.

Support from your healthcare team

Your healthcare team will be a group of healthcare professionals who will each play an active role in specific areas of your CML treatment. Their aim is to ensure you receive the best care and support you with questions or concerns. Every treatment centre will be different, but here are some examples of healthcare professionals who may be involved in your care:1

  • General Practitioner (GP) – you can speak to your GP about any day-to-day worries – they can give you advice or refer you to your consultant
  • Consultant – may be a haematologist or oncologist. You can talk to them about your CML diagnosis and long-term treatment
  • Pharmacist – an expert on your medicines, either in hospital or in the community. Speak to them about your TKI treatment, or concerns about drug-drug interactions

Sometimes your consultant may refer you to a wider team:

  • Counsellor or psychologist – uses interventions such as stress management, counselling, cognitive therapy and activity planning to support you emotionally
  • Physiotherapist or occupational therapist – can help you with any physical or practical problems associated with your CML
  • Social worker – might provide practical advice for instance managing finances or your job
  • Dietitians – can recommend an eating plan or suggests lifestyle changes to help with your treatment

For tips on talking to your healthcare team – see 3 reasons to open up.

  1. Mitsimponas & Rauh; ESMO IPOS Patient Guide, Survivorship 2017.
  2. Cancer.net. Talking With Someone Who Has Cancer. Accessed May 2018.