Sleep and Cancer

Transcript of Episode 12: Sleep and Cancer
The Thing About Cancer podcast, Cancer Council NSW

[Episode ID]
You’re listening to Sleep and Cancer, an episode of The Thing About Cancer podcast.

[Series intro]
[woman] The very essence of all cancers is a change in the way that cells divide.
[music]
[man] I remember sitting in there thinking, you know, it’s not happening, it’s not real, it can’t be real.
[woman 2] It’s something that we don’t talk about.
[woman 3] This feeling of being overwhelmed − it will get better once you have a plan and you know what to expect and what’s going to happen. It’s not going to be like this all the time.
[various voices] The Thing About Cancer: A podcast from Cancer Council NSW. Information and insights for people affected by cancer.

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Julie McCrossin: Hello, I’m Julie McCrossin. And today, the thing about cancer is that it can disrupt your sleep. The stress of the diagnosis, worrying about treatment, and the side effects themselves can mean some people with cancer have trouble getting to sleep and staying asleep. But what can you do about it?

Catherine Mason: I would caution against getting too fixated upon sleep because one of the ironies about sleep is the more anxious you are about it and the more determined you are to get a good night’s sleep, the more difficult it is to actually get a good night’s sleep. All of us have had periods in our lives where we didn’t get very much sleep, good sleep is ideal but it’s not catastrophic if you’re having problems sleeping.

Julie: That’s Dr Catherine Mason, a psychiatrist from Nepean Cancer Care Centre and Crown Princess Mary Cancer Centre at Westmead in Sydney. Catherine has helped many people with cancer work out how to get a good night’s sleep. At the start of this episode she’s going to talk about how cancer affects sleep, but in the second half of the episode she’ll offer practical strategies to help you sleep better.

Just to be clear, this podcast contains general information only, so we recommend that you talk to appropriate professionals about your individual situation. You can also call Cancer Council 13 11 20 if you have any questions.

We’ll hear more from Catherine in a moment, but first here’s Annmaree talking about how she learnt to cope with sleep issues after a cancer diagnosis.

Annmaree: As the days go on before the operation, you’ve got sort of panic happening on a day-to-day basis, so sleep was very difficult. But as my “journey” progressed, I learnt more and more ways of managing to get back to sleep, and falling asleep in the first instance.

Julie: At the start of this episode, psychiatrist Catherine Mason spoke about how as much as sleep is important, it’s a good idea not to become too fixated on sleep problems. And it’s my pleasure to welcome Catherine now to the program. So Catherine, how does cancer affect sleep?

Catherine: There are lots of different ways in which cancer can affect sleep. I’d probably start with the first, and maybe the most obvious, which is that the diagnosis of cancer represents a threat − to yourself, or to the people you care about or to your future − and when we feel we’re under threat, we get a stress response. A fight, flight, freeze response, and if that stress response is getting triggered by thoughts about the cancer, it’s really difficult to relax enough to get off to sleep. And so you might find those worries pop up as you try and get to sleep and that means you’re having initial insomnia − trouble getting off to sleep.

Julie: We’re going to talk about particular strategies later in the episode, but first could I just ask you, why is sleep important?

Catherine: It seems to be very important across the lifespan. Really important for babies, it’s really important for adolescents and it’s really important even later in life. It seems to be an essential part of maintenance, for our bodies and for our minds. So part of what sleep we think does is help us sort out memories, but it also helps with tissue repair and with keeping everything kind of ticking over. And when you think about it, it kinda makes sense because we become unconscious when we sleep. We turn off that chattering monkey of a brain that we all walk around with. If we didn’t do that, we wouldn’t sit still for very long and we wouldn’t have that block of time where we’re repairing tissue rather than running around doing all the other stuff that we do when we’re awake and conscious.

Julie: That implies that if you’re in a struggle with cancer to get well, it’s a very, very important thing to have if it’s about overall wellbeing and the healing of tissue, isn’t that, healing is what we’re all about?

Catherine: Yes, though I would caution against getting too fixated upon sleep because one of the ironies about sleep is the more anxious you are about it and the more determined you are to get a good night’s sleep, the more difficult it is to actually get a good night’s sleep. All of us have had periods in our lives where we don’t get very much sleep. Good sleep is ideal but it’s not catastrophic if you’re having problems sleeping.

Julie: Well, so that’s an important message isn’t it? Because if you’re listening to this with a cancer diagnosis and you’re in treatment and you’re thinking, if I don’t get enough sleep will that lower my capacity to rid my body of cancer?

Catherine: Yes, and there’s no evidence of that. So, it’s important to keep it in perspective. But, just like we would like to keep your general health as good as possible, we want your nutrition as good as possible, we want you to keep exercising if you can through your cancer treatment, we would like you to keep sleeping as well through your cancer treatment. And that’s why it’s not a trivial thing to mention to your treating team.

Julie: I want to turn now to what trouble sleeping means… so someone listening to this can say, am I in the normal range or am I having trouble sleeping, but perhaps you can discuss how sleep works. Because one hears about there being cycles of sleep, so what is it useful to know about sleep in order to understand if you’re having trouble or not?

Catherine: It’s useful to know that your need for sleep varies across the lifespan. So the amount of sleep you need when you’re 16 is different to the amount of sleep that you need when you’re 66. We all go through phases of relative alertness and relative sleepiness and they’re approximately 90 minute cycles, so that varies a little bit and they’re called circadian rhythms. That’s useful because if you’re awake in the middle of the night and you can’t get back to sleep, the next wave of sleepiness will come round within the next 90 minutes. So you’re not going to sit up all night waiting to feel sleepy again.

Julie: And could I ask you about REM and non-REM and what they stand for and their significance?

Catherine: When we sleep, we go through a number of different stages of sleep. There are four stages of non-REM sleep and then there’s REM sleep − and REM sleep means rapid eye movement. And that’s dreaming sleep. The four stages of non REM sleep basically vary in terms of how deeply asleep we are. We do quite a lot of cycling in and out of REM and non-REM sleep… the longer we sleep the more REM sleep we have. So the first few hours tends to have more of stage 1 to 4 of non-REM sleep, and stage 4 is particularly restorative sleep. So if you’ve slept for about six hours, you’ve probably done most of the restorative stage 4 sleep that you’re going to do that night.

Julie: Could you run through the classic triggers of sleep disruption associated with cancer?

Catherine: We’re very much creatures of habit when it comes to sleep and we all have habits around sleep, and we may get disrupted, then our sleep can be disrupted. If you think of them under the headings of the different kind of categories of treatments, so surgery for instance. Lots of cancer patients have some surgery. That means that there will be discomfort, at the surgical site if, for instance, I always curl up on my right side to go to sleep and I’ve just had a mastectomy on the right side when I curl up on my right side, I can’t get comfortable, I can’t get off to sleep, or I might roll over onto my right side while I’m sleeping and that then means that I wake up again.

Julie: That is such a small but significant observation, isn’t it? We all do have ways we like to sleep and that alone could stop you sleeping! And what about radiation therapy and chemotherapy, how can they affect sleep?

Catherine: When we have radiotherapy, the skin around the radiotherapy site can become quite tender, can become very warm, and so again, how you position yourself when you’re sleeping is uncomfortable, that can make it difficult for you to get off to sleep or to stay asleep. And then with chemotherapy there are aspects of chemotherapy that can disrupt your sleep.

Julie: What sort of things?

Catherine: You might be nauseated and that’s making it hard to get off to sleep or to stay asleep. You might be having hot flushes or have sore joints if you’re having a hormone blocker treatment. You might be losing weight and so you’re hungry because you don’t have much appetite but your body’s still hungry and it’s difficult to get a good night’s sleep if you’re in a weight loss mode. The last, and kind of classic, is we use corticosteroids a lot. So they will make you wake up at 2 or 3 o’clock in the morning, wide awake, and you can’t get back to sleep again because of the way they disrupt your body’s 24-hour circadian rhythms.

Julie: And, what is a corticosteroid and why do you often need to have them as part of your treatment?

Catherine: Well, you might be having them in order to reduce nausea and vomiting around chemotherapy, and they’re very good at that. So it might be things like dexamethasone, prednisolone or prednisone. Most of the time in cancer they’re either being used a few doses around the days of the chemotherapy to reduce the nausea and vomiting, or they’re used as an intrinsic part of the chemotherapy, say with multiple myeloma, so you would get quite high doses with each course of chemotherapy.

Julie: What’s hormone therapy, and can that affect sleep?

Catherine: That can certainly affect sleep. So it’s things like the androgen blockers that are used for prostate cancer or the oestrogen blockers that are used often for breast cancer. And they then cause you to have menopause-like symptoms and that means hot flushes and, you know, possibly quite significant sweating. And while you might be able to cope with that during the day, when you climb into bed at night and you’re getting waves of hot flushes or you’re waking up wet with sweat, that’s really disruptive to your sleep.

Julie: Are there any other common side effects when we’re having cancer treatment that can disrupt sleep? I suppose what I’m partly thinking about are the things that can cause diarrhoea or constipation. As a former cancer patient, constipation is a tougher thing that I ever realised.

Catherine: Ohhh, incredibly uncomfortable and also interferes with the absorption of your other medications so if you’re getting very constipated, the other things that you’re taking to help with pain or to help with nausea may not be absorbed very well and so your symptom control then isn’t very good.

Julie: As I listen to you Catherine, it seems clear you need to speak up if any aspect of the treatment, medication or anything else is disrupting you sleep − let people know. Is that an important message?

Catherine: Absolutely. There’s often things that the team can suggest or changes that they can make. So for instance, if you’re using corticosteroids to reduce nausea and vomiting, they’ll often modify the dose to see if that then makes it easier for you to get off to sleep. Or they’ll suggest you take the medications at a certain time of day. The nurses are often really smart in suggesting ways you might arrange the pillows or change the bedding or the posture that you’re using to sleep.

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Julie: We’ll come back to Catherine in a moment, but first let’s hear from Annmaree, about how cancer treatment affected her ability to sleep.

Annmaree: At different times of my journey, it would be different reasons as to why I couldn’t sleep. After operations, of course, you’ve got the pain site. And with a mastectomy and a skin-sparing expander like I had, you have this sort of bag inside your chest which is incredibly uncomfortable. And I had that for 15 months, so for 15 months, every time you lie on one side of your body, you get this jarring sort of nudge, “oh yes, there’s something foreign inside your body”. So the chemotherapy − you’d have a lot of hot flushes and you would be quite ill for maybe about five days and then I found after a couple of days I was feeling better. And then with radiotherapy you’re also quite hot, I found that my heat levels of my body was causing a lot of the waking up with the hot flushes and things. But you learn to work out what to do to help you sleep.

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Julie: There are classic, sort of, points in what’s often called “the cancer journey” where it’s not uncommon for sleep disruption, can you just run through some of those classic moments that people may need extra support because of sleep disruption?

Catherine: Yeah, so those classic moments are often points of transition where the uncertainty is going up and there’s potential threat. So you’re waiting for the scan result, you need to know whether the treatment’s worked so far, whether the tumour’s recurred, whether you’re going to have to look at going back into treatment again. So all of those thoughts will come up. During the day, you can distract yourself, you’ve got people to chat to on the phone, you can watch something on TV, so the thoughts might not necessarily be terribly prominent. As soon as you go to bed, your head hits the pillow, the lights go out and up they pop. And it’s a bit like the screensaver on the computer. Once you don’t have any other files open, that’s the stuff that comes up, and it gets a grip and it’s a threat. And your natural response to that is to do the opposite of what you need to do in order to be relaxed enough to get off to sleep.

Julie: Now, it’s likely that most of the people listening to this will be people who’ve just had a diagnosis, or their friends and families. But I guess it’s important to mention that follow-up appointments can become part of your life for many years. So these are other opportunities for sleep disruption!

Catherine: Sometimes you might use your strategies just in those few days around your six-month review, or your three-month review, but they might be strategies that you use most nights when you are actually having your active treatment − your chemotherapy or your radiotherapy. So they’re useful things to learn as a long-term practice.

Julie: So obviously listeners are dying to hear how to improve sleep, but first, could you just say what the classic indicators are that your sleep is disrupted?

Catherine: You’re having trouble getting off to sleep − so that’s called sleep latency. You’re waking up through the night and you go to the toilet and you come to bed and you can’t get back to sleep again. You’re waking up in the morning feeling utterly exhausted, and as if you haven’t slept a wink. Just because you have cancer doesn’t mean you can’t have ordinary sleep problems. And we’ve all heard of a couple of really common sleep disorders, and sleep apnoea would be the one a lot of people have already heard of…

Julie: In a nutshell it’s…?

Catherine: It’s when the airway gets obstructed or for some other reason you stop breathing when you’re asleep. And that sets off an alarm system, usually you don’t wake up completely, you wake up to one of the lighter stages of sleep and then you go back to sleep again. But it means that you’re constantly flicking in and out of sleep and you’re not getting much of that stage 3 or stage 4 sleep, which is the restorative sleep. So people with sleep apnoea are often tired, they yawn a lot, they fall asleep easily during the day.

Julie: The most common physical and emotional impacts of not getting enough sleep, how do people classically seem during the day if they haven’t had enough?

Catherine: You get really tired. Your reaction times aren’t so good and you may be a little bit mentally foggy. So you’re not picking things up as quickly as you might normally. Some people get quite irritable, and maybe snarky and snappy, with the people around them.

Julie: And, there is a connection, as I understand it, often between a cancer diagnosis and anxiety and depression, and there’s a relation there isn’t there, if you don’t get sufficient sleep, or is that not right?

Catherine: Well, that’s a chicken and egg question really because if you’re anxious then you’ve got that fight−flight−stress response triggering all the time and that produces a physiological state that’s the opposite of the state that you need to get into to get off to sleep, or to stay asleep. If you’re depressed, a kind of classic symptom of depression is disruption to sleep. Either initial insomnia, so trouble getting off to sleep, or with people with a more melancholic picture, they wake up in the early hours of the morning with awful thoughts going round and round their heads, and it’s very hard to get back to sleep again. So, depression, anxiety in themselves will disrupt sleep. Depression, anxiety plus cancer, you’re almost certain to have some disruption to sleep.

Julie: And can sleeplessness or lack of sleep influence how you experience pain?

Catherine: Yes of course and that’s again one of these interactive things. So if you’re in pain that’s going to interfere with your sleep, if you’re not sleeping very well then your sensitivity to pain is quite likely to increase. Just as if you’re very anxious or if you’re depressed, your sensitivity to pain changes too.

Julie: And that really matters with cancer treatment, doesn’t it? Because everyone is working so hard to keep you pain-free. So, again, let your team know if you’re experiencing pain − you should anyway − but particularly because it could be a sign that sleep’s an issue.

Catherine: Yes, or that there is some things they can do to modify your pain regime that will then help you to get better sleep.

Julie: Do you know if people are generally reluctant to raise this with their medical team or their health team because they think it’s too trivial compared to cancer?

Catherine: I think that’s often the case or they may already have presumed that there’s not going to be very much that the doctor can do about it, or that the team can do about it.

Julie: What can the doctor or the team do about it?

Catherine: They may be able to, as we say, look at the symptom management. So the nausea, the constipation, the pain − if they can modify that, then you get a better symptom management, then your sleep may well improve. There may be some practical things in terms of your comfort in the bed, the way the pillows are arranged, those sort of things that can be modified that would also make it more comfortable for you at night. They would probably be pretty reluctant to prescribe medication for sleep, and they may suggest that you see the clinical psychologist for some assistance with some of the psychological strategies around managing sleep.

Julie: And are there any particular types of cancers that are known for sleep disruption or can it happen in any circumstance?

Catherine: All types of cancer carry that threat. So whatever type of cancer you’ve got, for a lot of people there’s an association with a threat of some kind and that’s going to set off that fight−flight−freeze response. It probably depends a lot on the kinds of treatment that we’re providing for you – and so, you know, depending on the kind of surgery or depending on the kind of chemotherapy or depending on the kind of radiotherapy and where it is, that’s going to impact on how much sleep is affected.

Julie: The other thing I’d mention from my own experience as a patient is, I was on four-hourly medication. I’d had a lot of radiation to my head and neck.

Catherine: Yes, yes.

Julie: And I needed it for pain relief. But it meant that for a good eight to ten weeks, I did need to be awake every four hours, so that was almost a prescribed sleep disruption.

Catherine: Yes, yes. It was an institutionalised disruption of your sleep.

Julie: Because if I didn’t take the medication, pain would re-emerge and I would’ve woken up anyway…

Catherine: Yes, yep. So that’s where it’s worth talking to your treating team about whether they can suggest some of the longer-acting pain medications or even a patch. So sometimes they’ll ask the palliative care physician to consult, not because they think you’ve got advanced disease or a terminal illness, but because they’re often the experts in the fine-tuning of pain management. And they may consult once or twice, suggest some changes. You use a patch at night, which means that you’ve got slow release over a prolonged period of time and you’re not getting those dips and spikes.

Julie: You were mentioning medications for sleep and that it’s unlikely you would be offered “sleeping pills”, if I could put it that way, while you’re in the midst of cancer treatment, do you want to just say a little bit more about that?

Catherine: Yes, unfortunately, we don’t have any medication to help with sleep that reproduces a healthy sleep structure. The ones that are most commonly used in Australia are only approved for short-term use, and that means five to seven days, that doesn’t mean five to seven weeks. And if you’re going through cancer treatment, a lot of the time it’s a year of your life that you’re talking about. So these are not going to be strategies that will be useful night after night after night. So, they’re useful the night before that review scan or that review appointment, but they’re not useful night after night after night.

Julie: And if you’re in that acute phase of treatment when you may, depending on your cancer, be on opioids for pain relief, are there concerns about mixing those two medications from a safety perspective?

Catherine: Indeed. Your sensitivity to the respiratory side effects of those medications can increase because there is a certain amount of interaction between those two.

Julie: In a moment, I’d love a summary of what we can do to help ourselves sleep well. But first, for people with partners, how can we avoid disrupting their sleep?

Catherine: Yes! You’re restless, you’re waking up in the middle of the night, you’re waking up absolutely drenched with sweat, and if you’re sharing a bed, the person sharing the bed will get drenched with sweat too. Or you’re uncomfortable and they wake up because they don’t want you to be uncomfortable so they want to help you get more comfortable. So sometimes people sleep in separate beds for a while, just as a practical strategy. Even if you’re in a separate bed, though, you’re always kind of keeping one ear open for what your partner’s doing. So even if you’re a carer rather than a partner, you’ll still often be sleeping more lightly, you’ll be much more easily waking up. We sometimes see people who’ve looked after their family member or their friend during advanced disease, so they’ll often be getting up during the night to top up pain medication, to help with toileting, and that can go on for weeks and months. And that then leaves a pattern of sleep for the carer that can take quite a while to re-establish back into a healthier pattern.

Julie: So, what’s the general message to the partner or carer or friend?

Catherine: It’s really useful to recruit help. So that may mean that someone else in your social network or in your family takes over for a couple of nights. Maybe they do the weekend or they do Friday, Saturday nights. Just so you have some break, some sort of respite. That doesn’t necessarily mean institutional care, it can mean just using the resources within your network, and putting up your hand to ask for help. That’s not a bad thing to do at all, in fact it’s part of keeping you well enough to be there for the long haul.

Julie: Exactly. I often feel it’s a marathon not a sprint.

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Julie: You’re listening to The Thing About Cancer, a podcast from Cancer Council NSW. I’m Julie McCrossin, and I’m taking to psychiatrist Catherine Mason about dealing with sleep issues during cancer treatment. If you have any questions about this topic, or just want to talk to someone about your concerns, you can call Cancer Council 13 11 20.

For links to any of the websites or services we mention, or to listen to more podcasts, visit cancercouncil.com.au/podcasts and click through to the episode “Sleep and Cancer”. We’ll hear more from Catherine in a moment, but first we’re going to hear again from Annmaree, who developed her own strategies for getting back to sleep.

Annmaree: With the operation side of it, I just found lots of pillows and, you know, new… I think I bought myself a new pillow, new sheets, just to sort of create a little cocoon so I could relax more. And then when I found out I was having this big operation, I then turned to exercise a lot so I started working with an exercise physiologist, and building my body up and also walking an hour every day, you know, seven days a week. So that then started to calm me down and really tire me out, especially when I was doing the big workout afterwards as well. So then I was getting to the point where I was just exhausted, so I was just falling asleep with pure exhaustion.

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Julie: So Catherine, what can I do as a person with the sleep problem to improve the chances of a good night’s sleep?

Catherine: These are pretty standard instructions and most of the sleep clinics or specialist sleep services will give you the same sort of advice. Let’s start with the practicalities. We’ll talk about lifestyle − so probably a good idea not to be having caffeinated beverages after midday. Caffeine is a stimulant and it will alert you a little bit. Good idea to be getting some exercise every day − of all the interventions that we can offer for sleep, we know exercise is the one that we know helps you get off to sleep faster and it helps preserve the healthy structure of sleep. Even if it’s just a 15, 20 minute walk a day, because that’s got all sorts of other benefits that are really important. Then have a look at your sleep environment and make sure that that’s as comfortable as you can make it. So you’re not too hot, you’re not too cold, you haven’t got a lot of noise coming into the room from outside. Invest in a decent mattress, and decent pillows and some bed linen that’s natural fibres. Ah, so that usually keeps you cooler overnight. Make sure that pets aren’t jumping on you at 2 o’clock in the morning suggesting a snack. And make sure that you’ve got the light controlled.

Julie: And where does alcohol and smoking fit into this?

Catherine: Well, most oncology doctors would encourage you to minimise your alcohol intake, if possible, during your oncology treatment and after your oncology treatment too. Alcohol disrupts that structure of the sleep. So it looks like a good idea because you think it’s helping you relax to get off to sleep but in fact it’s not giving you a good sleep. If you’re drinking a great deal of alcohol, you can be starting to withdraw overnight and that can be contributing to you waking up. And it certainly can be a problem with nicotine − so if you’re smoking quite heavily, if you’re having a cigarette every hour, and then suddenly at 11 o’clock you stop doing that, your body can start craving the nicotine. It’s worth talking to your treating team or to your GP because even if you use a nicotine patch overnight that stops nicotine withdrawal being one of triggers for you waking up.

Julie: You often hear about melatonin from people who travel, what is melatonin? And does it have a role to play in helping people with cancer get to sleep?

Catherine: Yes, and they’re using it for jet lag. Melatonin is a naturally occurring substance, the secretion of melatonin is part of those circadian rhythms that we go through every 24 hours.

Julie: So, is it a hormone, is it?

Catherine: It’s a protein, I think would be a better way to describe it. And it’s part of your body’s system for regulating sleep and alertness, and a few other things as well. If you have a particular kind of problem with sleep, if you’ve got what’s called a phase shift, your circadian rhythms have shifted out of whack and you’re operating as if you’re on Los Angeles time, rather than Sydney time, then melatonin can be very useful. So you can get into a phase shift behaviourally, and particularly if we put you in hospital and really disrupt your cycles by what we do in hospital, but if that’s the particular kind of sleep problem you have then melatonin’s likely to be useful. If you have initial insomnia because you’re lying awake worrying, melatonin is not going to do much for you at all.

Julie: Can I also ask you, you know, you sometimes hear “always go to bed at the same time”, that somehow routine is important…

Catherine: Yes, routine helps a lot. And rather than insisting on going to bed at the same time, I’d probably suggest you try and wake up at the same time. So try and get into a real habit around waking up and getting out of bed at the same time, and if you possibly can, get into a bit of sunlight because the sunlight tells your brain that this is daytime.

Julie: So a regular bedtime is less important?

Catherine: Trying to get to bed at the same time is a good idea but if that means you’re not going to the family dinners, or you’re not seeing your friends or you won’t go out to a movie in the evening − that’s, that’s not a great thing. Because that’s depriving you of some really nice social contact and some experiences that are positive and make you feel good and are an important part of living a balanced life.

Julie: People talk about a “wind down routine”. What’s that?

Catherine: If you get into a routine and you have it established, it’s part of cueing your body and your mind that this is the time that we get ready for sleep. We say generally keep away from the screens as much as you can, get off the phone, get off Facebook, get off the iPad because the light’s very bright and it’s more like sunlight, so it can trick your brain into thinking that this is daytime. It’s good to have some sort of a practice that you do that reverses that stress response, so that may be a relaxation practice, it might be a meditation practice, it might be 10 minutes of yoga or stretching. And some people use a herbal tea or a particular food or flavour that, kind of, cues them that this is the time for relaxation and wind down. Cancer Council have a nice 24 ¬-minute sleep relaxation exercise on their relaxation CD, and most of the people I’ve recommended it to, haven’t heard the 24th minute.

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Julie: The meditation track is available as a CD by calling 13 11 20, or on our website. And we’ll put a link to it on our podcast page – cancercouncil.com.au/podcasts and just click through to the “Sleep and Cancer” episode.

We’ll hear more from Catherine in a moment, but first we’re going to hear again from Annmaree, who found that particular apps really helped her to get to sleep.

Annmaree: I just found a few free apps on the phones, and I found one in particular that I just liked the lady’s voice and I would put rain sound effect that you could do on the app rather than music. And then I’d get so used to her just repeating a little bit of mindfulness that I found I was getting quite addicted to that sound and it was really, really helping… And I even found if I woke in the middle of the night, sort of really quite panicky and upset, I would put the lady’s voice back on again.

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Julie: Catherine, I wanted to ask you about reading before bed. Is that going to interfere with getting to sleep?

Catherine: If you read for 15 or 20 minutes and then you put the book down and you get off to sleep, that’s fine. A bit like if you listen to the radio for 15 or 20 minutes, it’s part of your wind down. But if the reading is too stimulating and you’re still awake in bed reading two hours later then that’s really not helpful at all, because you’ve read through your wave of sleepiness and it’s going to be harder to get off to sleep.

Julie: But I know someone who listens to a Harry Potter reading over and over again…

Catherine: Yep.

Julie: I assume the repetition means your brain doesn’t engage as much because you actually know what’s happening but it’s the human voice that’s with you?

Catherine: Yes, and a familiar set of characters and a predictable story line because you’ve read it 10, 20, 30 times before and that’s quite comforting or quite soothing. Some people use music in a similar sort of way. So may listen to pretty much the same music each evening as part of their wind down routine or as part of a way of providing a focus mentally that is not that threat.

Julie: May I just ask you, about how long is it okay to listen to the radio or a podcast or read a book in bed before it starts interfering with getting to sleep?

Catherine: It’s not a great idea to be timing. You don’t want a stopwatch sitting there, you know, oops 30 minutes, that’s it! I’m out of bed! Because that just adds another focus and stress that’s the opposite of what you want for sleep, but I’m sure your friend who listens to the book over and over again, if you actually time, they’re probably off to sleep within five to ten minutes of that program starting up, or that book starting up because they’ve trained themselves, this is a cue, we’re ready for sleep now, and it’s almost like an automatic response.

Julie: And what about napping in the day?

Catherine: This is a bit of a vexed issue. It’s possible that, you know, our circadian rhythms would actually prefer us all to nap during the day, and although there might be an urge to nap, we usually encourage people not to do that. The more you sleep in the day, the less you’ll sleep at night. So if you sleep seven, eight hours at night, and you also have a nap for an hour and a half in the afternoon, that’s not a problem. If you’re having a nap for two hours in the afternoon and only sleeping five hours at night − that’s more of a problem. And the problem with that is, that if you’re awake at night no-one else is. And so you can’t do any of those sort of social things to help to pass the time, you’re just sitting there in the dark with your thoughts.

Julie: Let’s come to that, sitting in the dark with your thoughts. Now, you know a cancer diagnosis affects us all in different ways but a kind of lurking dread and fear of a very primal nature can be an experience from time to time, or even consistently. How do you manage that when you’re awake in the night?

Catherine: So we don’t want you to be lying in bed worrying. And, I mentioned before, the screensaver. Same sort of thing can happen that you lie in bed, trying to get off to sleep, the “what ifs” start up. You start to have thoughts about the cancer, the cancer treatment, the kids, whatever.

Julie: So screensaver is this notion of a default worry that just keeps coming back in, almost an intrusive thought?

Catherine: Well it pops up when you don’t have something else to direct your attention to. So if during the day you might not be thinking about it very much because you’re busy with all the other things, getting to the doctor’s appointments, and making sure that you’ve got enough food in the house and, you know, all of that stuff that you’re running around doing during the day. But at night, when you turn out the light and your head hits the pillow, there’s nothing else to really focus on and that’s when the worries pop up. If that’s happening, it’s often a good idea to just get out of bed straightaway. If the worries have got a grip and you can’t distract yourself from them, get out of bed. A couple of different strategies that you might use − and sometimes a clinical psychologist can help you with this in a bit more detail − you might for instance have an exercise book that you sit down at the kitchen table and you write down what’s going through your head word for word. And you keep writing as long as it’s spinning around in your head. So there will be quite a lot of repetition, and the same thing will come up again and again and after a while you get a bit bored with it. And it’s a way of getting the thoughts out of your head and onto the page. And then you close that exercise book and you say to yourself, I’ll think about that tomorrow at 9:30. I’ll sit down with a cup of tea and see what I can work out in terms of solving this problem but it’s got it out of your head for tonight and you’re more likely to be able to go to bed and not be so troubled by those thoughts.

Julie: So it’s the combination of writing them down…

Catherine: Yes.

Julie: And scheduling another time to think about them.

Catherine: That’s right.

Julie: Things like relaxation, massage, acupuncture. Do they all play a role in nurturing wellbeing to sleep?

Catherine: They can, and it depends on what works for you. So some people just can’t get into meditation or just can’t get into relaxation, or they find that a practice that involves physical movement works − like yoga works best for them rather than a practice that is sitting with your eyes closed staying still. So, you really have to do a bit of trial and error. So encourage a little bit of experimentation, see what works for you.

Julie: So is it important to keep an open mind? Whether you’re a carer or a patient to think, “this is a really big struggle, I need to be open perhaps to things that previously hadn’t attracted me…”

Catherine: You might have been a person who coped very well with the other challenges that you’ve had in life up until now, but the things you did to cope with those other challenges aren’t working well for coping with the challenge of cancer. And you need to learn some new things because this is a different type of challenge. So it doesn’t mean you’re a hopeless person or a bad coper or that you don’t have life skills. It means that you’ve met a challenge where you need a bit of extra professional help.

Julie: That’s such a great think to say, because if I could say personally, I’d always seen myself as quite a courageous person but when I got a cancer diagnosis, I was scared. Really scared, for months! And finally I thought, I don’t want to put any flashy words on this, I’m just scared. But somehow you have to accept that this is an unusual challenge.

Catherine: That’s right, and cancer is different.

Julie: It’s something to do with the cultural power of the word, isn’t it?

Catherine: It is something to do with the cultural power of the word. I think it’s also that sense that it’s stolen your future. So not just the person you are now, but the person you were into the future has been taken away from you and all of those plans, and your sense of the path you were on, suddenly disappears. And then it means living with uncertainly longer-term. And we can’t give you a very good idea about what to look out for as a sign that the cancer’s returning.

Julie: As you speak, for a portion of people, the diagnosis of cancer is a genuine shock because they looked and felt healthy.

Catherine: Absolutely.

Julie: I put it to you, that what we’ve described in this conversation is a perfect storm of characteristics that are likely to disrupt sleep. And you’ve given us a whole lot of strategies we can try but, say you’ve tried a lot of them in a sustained way, given it a genuine go, and you think, no I need professional help − so, the classic sources of professional help when working alone, or even with your GP alone, is not enough?

Catherine: Yep. So, clinical psychologists will often be able to help you refine your relaxation practices, look at some of those thoughts that are coming up that are threatening. Changing those thoughts or modifying them in ways that allow you to feel some sort of mastery of them or to manage them better. So they’re often real experts in managing worry and they’ll have a whole range of techniques and they’ll do an individual assessment and then make a series of suggestions based on that. If they feel that medication might be useful, they might suggest you talk either to your GP or to a psychiatrist. And the sorts of medications we’d be looking at if sleep is a problem consistently, night after night after night, are not the traditional benzodiazepines or the Z drugs. They’re more likely to be low doses of an antidepressant, where you don’t develop the same sort of tolerance, but as a side effect of that sort of antidepressant you do get some sedation.

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Julie: Of course, it’s important to try different strategies to improve your sleep and find the ones that work best for you. This is what Annmaree did until she settled on a routine that was right for her.

Annmaree: I tend to put the phone down, do a little tiny bit of Pilates just to sort of stretch a little bit. And then, obviously wash your face, all that sort of thing, and then just go to bed and go to sleep. And fairly quickly these days because I’m quite tired with all the exercise I’m doing. I feel quite refreshed when I wake up now.

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Julie: That’s it for this episode of The Thing About Cancer. Thanks to Catherine and Annmaree for sharing their insights. If you’re looking for more information, you can ring Cancer Council 13 11 20 Information and Support Service from anywhere in Australia, or go to cancercouncil.com.au/podcasts. If you have any feedback on this podcast, we’d love to hear from you. So leave us a review on iTunes or on our website. If you’d like to subscribe to the show, you can do it in Apple Podcasts, or your favourite podcasting app.

If you found this episode helpful, you might want to listen to our podcast on coping with fatigue. In that episode, I talk to Haryana Dhillon about what is different about cancer fatigue and how you can get your energy back.

Haryana: I think the key thing really is to learn about pacing. And pacing is one of those strategies that people can put in place when they are feeling fatigued which helps them to work out essentially how much energy they’ve got in their energy basket, and where they’d like to share that around.

Julie: You can find the “Managing Cancer Fatigue” episode on our website at cancercouncil.com.au/podcasts.

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Julie: The stories and experiences contained in this podcast represent the views and opinions of the speakers. They do not necessarily represent the views and opinions of Cancer Council NSW. This podcast contains general information only and Cancer Council NSW recommends you obtain independent advice specific to your circumstances from appropriate professionals. I’m Julie McCrossin, and this has been The Thing About Cancer, a podcast from Cancer Council NSW.

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