Sleep problems

Sleep is needed for physical and mental well-being. As well as giving us energy for the next day, sleep improves how our body functions. Sleep lowers blood pressure and strengthens the immune system. It regulates hormones and improves our cognitive abilities. This means you’ll have a clearer head, better focus and improved memory and problem-solving skills. Importantly, sleep also repairs cells and tissues throughout the body.

There are two phases of sleep which repeat while you’re asleep: Rapid eye movement (REM) and non-rapid eye movement (NREM). These phases alternate during the sleeping period, with each cycle lasting about 90 minutes. The first REM cycle is short, and as the night goes, these cycles get longer. This means as you sleep into the night, your sleep gets less deep.

REM phase is when the brain is active. This is when you’re dreaming.

NREM has three stages and is the restful stage of sleep. This is when your body builds bone and muscle, repairs tissue and strengthens your immune system.

If these stages are interrupted, or you don’t sleep long enough, the lack of sleep can have negative effects on your overall health.

Sleep is helpful in rebuilding your well-being, whether during treatment or living with a chronic blood cancer. It is something to prioritise as part of looking after yourself.

Losing sleep can make you tired and frustrated, and it can be tempting to give up if the first thing you try to fix it doesn’t work. However, sleep provides a good foundation for your overall health, so it is important to keep trying and give yourself the best chance to sleep well.

If your sleep is not improving and you've already tried lots of different things, speak to your hospital team for further help.

Everyone has different sleep requirements, but most people need 7 to 9 hours of sleep each night. People with blood cancer may need more sleep because of the changes happening in the body, and the mental toll of the diagnosis. However, some people may find that because they are doing less each day, that they need less sleep at night.

Feeling tired during the day can be a sign that you need more sleep at night. If you are feeling fatigued a lot of the time, is important you allow yourself to get the rest you need as you go through treatment for blood cancer.

As we get older, we often wake more, and naturally get less sleep each night, especially deep sleep. If you’re not sure whether you’re getting enough sleep, you can check with your doctor.

People with blood cancer talk about finding it hard to get to sleep or to stay asleep, sleeping unusual hours, or having disruptions to their sleeping patterns.

There are many causes of sleep problems, but common ones include the impact of your general emotional well-being and the disruption of hospital stays. Having blood cancer can change your entire routine, so it’s no surprise that sleep gets impacted too.

When you've got blood cancer, it is also normal to have lots of different side effects. These can contribute towards poor sleep.

Some common causes of sleeping problems include:

• pain or discomfort
• nausea
• urinary or bowel problems
• neurological problems, such as peripheral neuropathy (nerve damage)
• medication such as steroids
• anxiety or feeling distressed
• hormonal changes
• smoking, alcohol, or caffeine.

Medications that can cause sleep disturbances include steroids, anti-sickness medications, hormone treatments and some targeted cancer drugs. If you think steroids could be causing your poor sleep, taking them in the morning can be helpful. Ask your doctor if you aren’t sure if the medication you’re on could be affecting your sleep.

Aspects of your sleep environment can also affect your quality of sleep, such as:

• sleeping too much during the day
• being too hot or cold
• a light or noisy environment
• being in a hospital environment - sleeping in a different bed, in a noisy environment, having your sleep interrupted for tests and checks.

When you’re tired and not feeling well, it may feel hard to try new things to help you sleep. But small changes to your lifestyle and routine can make a big difference over time. Start small with a couple of manageable changes and adjust your choices from there. It may take some time to take effect, so it can be helpful to track your success using a diary, so you know what’s helping and what isn’t.

• Have good sleep hygiene. This is one of the most effective changes you can make. 'Sleep hygiene' means having habits and behaviours that promote sleep. This includes avoiding daytime naps (unless you are very tired, in which case keep it short), and going to bed and waking up at the same times each day. You should try to have a consistent sleep schedule across the week. It may take some time to reach this, so make small changes to your routine to help your body gradually adjust to your new sleep schedule.
• Create an inviting environment for sleep. Make your bedroom a relaxing place that is only reserved for sleeping. Avoid watching TV or reading in your bedroom - it’s best for your mind to associate it as a place for sleep only. Keep it at a cool temperature and dark at night. You can also teach your body it’s time for sleep by sticking to a regular bedtime routine. This could be a warm bath, reading or meditation before going to bed. Make sure to avoid screens before you go to sleep, as the blue light from phones and digital screens can disrupt melatonin production (a hormone that you need to make you feel sleepy).
• If you’re lying awake and unable to sleep for more than 20 minutes, get up and do something else. Choose something relaxing that won’t be too stimulating like listening to a podcast. When you start to feel sleepier, try going to sleep again.
• What you do in the daytime counts. If you feel able to, exercise or go for a walk. Any movement is good and will help you sleep better later. Daylight is good for regulating your circadian rhythms (your sleep-wake cycle) so aim to get some time outside each day too.
• Avoid caffeine in the evening, and limit alcohol and smoking as all can interfere with sleep quality. Don’t go to bed hungry, but avoid a heavy meal right before bedtime.
• If you get up for the toilet a lot in the night, limit how much you drink before bed.

Being diagnosed with blood cancer is a distressing time. It is normal to feel overwhelmed and for your thoughts about blood cancer to be stopping you from sleeping. You may find yourself worrying about your prognosis, treatment, and symptoms. Lots of people also find themselves thinking about the impact of blood cancer on their work life and loved ones.

It can be frustrating when these thoughts and feelings stop you from sleeping. Some people find they fall asleep easily, but then wake in the middle of the night and can’t get back to sleep because of a busy mind. Your sleep is important and not sleeping can make your emotional well-being worse, leading to less resilience, poor memory, trouble staying alert and mood swings. A lack of sleep may make it feel harder to cope with blood cancer. Sometimes, these feelings can turn into anxiety, low mood, or depression.

If your worries or feelings are stopping you from sleeping, there are things that can help.

At night, it’s easy for things to feel worse. When there’s something we’re worried about, our anxious brain can tell us that if we think about it lots, we might come across something that will make us feel better. However, what usually happens is the same thoughts circle around and we feel worse and worse.

Stopping this cycle can be challenging in the moment, but is the simplest way to help your worried mind. Try getting up and writing down everything that is on your mind. People often find this makes them feel calmer, and more in control of the situation. You could also make a list of small actions you can take the next day, to start addressing the worries. This will make them feel more manageable.

Another technique to use during the night, is to take your mind off the worries by doing something else for a short time. Distract yourself by doing an enjoyable, calming activity, like reading or listening to a podcast. When you're feeling relaxed again, try to sleep again.

Mindfulness helps calm anxious and busy minds. It teaches you to accept how you’re feeling and focus on the present moment, with no expectations of trying to change anything right now. Deep breathing is another technique used to induce sleep. Taking slow deep breaths calms the nervous system and so is also useful in relaxing your body ready for sleep. There are many apps that can help with mindfulness and breathing exercises, such as Headspace or Calm.

There are other meditations you can try, aimed specifically at sleep. Insight timer has lots of free meditations, or you can search for more on YouTube.

Lots of people find talking about their worries helps them cope. It can be a relief to share your worries with others and this may help you sleep better too. You could talk to a friend or a family member, or you can talk to us on the Blood Cancer UK support line.

Sleep problems are a common problem for many people with blood cancer. You can find other people with blood cancer and share tips and advice on our online community forum.

Different types of counselling can help with sleep, but cognitive behavioural therapy (CBT) is used most often. CBT helps you respond to situations and emotions differently, in a more helpful way.

If you're interested in counselling, ask your hospital team first. Some hospitals have in-house support or can signpost you to counselling. You can also self-refer online on the NHS in England or through Breathing Space in Scotland. In Wales and Northern Ireland, speak to your GP. To find a qualified private counsellor, you can search bacp.co.uk

If you’re finding it difficult to sleep and it’s not getting better, your doctor might prescribe sleeping medication for you. This can be helpful as a short-term aid, because your body does need sleep.

It's best to try the above suggestions first before considering medication. Bit if you think you need sleeping tablets, speak to your doctor and they can talk through your options with you.

These questions might be helpful to ask your hospital team or doctor, if you are having problems sleeping:

• Can my diagnosis cause sleeping problems?
• Could my sleeping problems be a side effect of my treatment?
• What should I do if I’m having trouble sleeping?
• How long might these problems last?
• Are there medications I can have to improve my sleep?
• What should I think about when considering sleeping medication?