Infection worries and concerns

Knowing that your immune system isn’t working well can be a worry.

Some people say it’s always at the back of their minds. They feel they have little control of the situation.

If this makes you feel stressed or anxious, it’s completely understandable. You won’t be the only person to feel this way.

• Don’t be afraid to ask for help. Ask your hospital team or GP if they can refer you for counselling. See the next section on getting professional help.
• Talk to other people with blood cancer about your fears. They will understand. Join our online community forum. You don’t have to post if you don’t want to - it may help just to read previous conversations.
• Read our information about mind and emotions, including ideas on managing anxiety for you to try.
• Visit the NHS website Every Mind Matters for advice and practical tips to help you look after your mental health.
• See what other people say about coping with the risk of infection and how they have made decisions that are right for them.

Family members may also feel anxious. They may be worried about you, and worried they may be a risk to you.

Encourage them to talk to someone too. They can contact our Support Service or join our online community forum, and may also want to consider professional help.

Many people find talking to a trained counsellor helps them come to terms with difficult emotions or life changes.

NHS counselling

• Getting free psychological support through the NHS can take time, but ask your hospital team or GP what’s available in your area.
• You can refer yourself online if you live in England or Scotland. In Wales and Northern Ireland, you will need to go through your GP.

If you’re employed, you may be able to get free counselling through your company’s employee assistance scheme (EAP) while you wait for an NHS referral to go through.

Private counselling

You can find a qualified counsellor anywhere in the UK from the British Association for Counselling and Psychotherapy or the Counselling Directory.

Local cancer support centres

Cancer support centres like Maggie’s offer emotional and psychological support for people diagnosed with any type of cancer and their families.

Ask your hospital team about cancer support centres in your area.

Find out how counselling has helped David cope with his blood cancer diagnosis.

There may be times when you have limited contact with other people, particularly if you are having active treatment.

You may have to keep away from loved ones for a while, whether you’re in hospital or at home.

Coping with isolation

• If you’re feeling lonely or isolated, talk to other people with blood cancer on our online community forum or speak to our Support Service.
• Explain to family and friends that you can’t see them right now, but that you want to stay in touch.
• Tell people how you want to stay in touch – by phone, email, post, group chat and so on.
• Plan things to look forward to that are low risk such as going for a walk with a friend, or a virtual film night.

Find a routine

• Try creating a timetable for yourself – having a routine to follow can help, even if you’re in hospital.
• Start a diary – you can record your goals, things you've achieved, things that have helped you, and how you're feeling.
• Try to maintain a regular sleeping pattern – getting the right amount of sleep can have a big impact on how you feel.
• If you struggle to get to sleep, meditation can help. Try listening to our guided relaxation and mindfulness exercises.

Looking after yourself

• Try to keep active – we have some guided exercise videos you can follow.
• Eat healthy, well-balanced meals and drink enough water – see our information on eating well with blood cancer.
• Try to get some natural sunlight and fresh air – it can lift your mood.

> Living with infection risk