Saturday 22 September 2018

Weekly Discussion Summary ~ Sleep Struggles

"Intrusive thoughts about cancer are magnified in the lonely, dark of the night, and our fears about our health can easily occupy us for hours when we want to be sleeping."

This week we talked about sleep and our struggles to get a good night’s sleep following a diagnosis of primary and secondary breast cancer.

Some of us find it hard to get to sleep, others drop off quickly but wake frequently throughout the night. Some wake in the middle of the night and then cannot get back to sleep again. We've forgotten what it's like to have a good night's sleep. Many of us dread the sound of our alarm clock and feel as though we live in a constant state of exhaustion.

Sound familiar?

We are all aware of the usual tips: going to bed at the same time, turning off screens an hour or so before bed, limiting caffeinated drinks in the evenings and eating dinner early. But, it seems that a solid night’s sleep eludes most of us.

Our struggles with sleep are impacted by many factors: night sweats and shivers wake many (caused by hormone medication and early menopause), pain associated with surgery, lymphoedema and stress, worry, anxiety, fear – associated with our cancer or relating to family or other matters – can all cause insomnia.

Many of us described our worry about functioning on so little sleep.This sets up a vicious circle of being unable to sleep because of our worrying about not being able to sleep! Naz told us that it can be really hard to break out of this cycle as the brain gets used to the habitual patterns of sleep, and learns the pattern as a familiar state which it will try to maintain and replicate.

Pain and discomfort is a common cause of night waking, and trying to get comfortable leads to tossing and turning which is disruptive to getting back to sleep. Cramps and restless legs are a regular problem for some. Pain killers and other medication can cause side effects that interrupt sleep. There are no easy answers.

Nights are the time when we are often most aware of our fear and worry. The tide of all those emotions we have pushed away so well during the day wash over us - stress, worry, anxiety, fear associated with our cancer or relating to family or other matters - can cause insomnia. Intrusive thoughts about cancer are magnified in the lonely dark of the night, and our fears about our health can easily occupy us for hours when we want to be sleeping. Nightmares plague many of us.

Chemotherapy and the anti-sickness and steroid drugs used to manage side-effects cause huge problems for us, preventing us from sleeping and as a result leads to extreme fatigue. We feel completely washed out but unable to sleep due to the buzz of the chemo cocktails.

The most common helpful tip shared was to do breathing exercises, either just before bed or while lying in bed. Ante-natal breathing exercises are great, and a simple 'breathe in relaxation', 'breathe out tension' repetition is a good place to start. Naz explained that the way these practices work is by taking us from the body to the brain, rather than trying to directly calm the brain by other means.

Being active during the day and exercising can help. Many recommended yoga, relaxation and meditation and some of us are keen to try this. Reading before bed can be helpful (and much better than watching tv or surfing the net.) For those who can, a short, early afternoon nap can help to make up for sleep deprivation, and those of us some women who are at work full-time often need to have a restorative nap at weekends.

Naz explained the important role of sleep in our lives and functioning. She reminded us that a bad night’s sleep interferes with cognitive function, especially attention and memory. Our brains are highly active during sleep, and deep sleep performs a restorative function, processing our daily activities and refreshing and stabilising our brains. Sleep is important for retaining memories and for learning new things. She told us that women with a breast cancer diagnosis can take at least half an hour longer to fall asleep than those without, research shows, and their sleep quality is impaired as substantiated by our members. Brain function and structure are affected by the PTSD and anxiety inhibits the brain’s ability to become calm as we try to fall asleep. Our hormones are severely imbalanced, whether due to medication or trauma or both, and our brains remain on high alert and we are fearful, even while we are asleep.

What helps?

A great tip is to start every night anew, putting behind us all our wakeful nights and treating every night as new. Keeping a sleep diary may also help, noting bed times, treatment undergone, food and drink, activity and anxiety levels and so on. Audio books of familiar tales help some, and relaxation scripts, guided meditations or music may be useful too. Herbal remedies help some of us (these must always be checked for safety with a medical team to ensure there is no adverse interaction with prescribed medication.)

Gratitude can also help to induce a relaxed state of mind before sleep – reflecting on three positive things that have happened during the day, things we are thankful for.

If you are a woman living in the UK with a breast cancer diagnosis, and you would like to join our private group, please send us a private message via

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