Managing Cancer Fatigue

Transcript of Episode 3: Managing Cancer Fatigue
The Thing About Cancer podcast, Cancer Council NSW

[Series intro]
[woman] The very essence of all cancers is a change in the way that cells divide.
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[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.
[woman 4] 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 make you fatigued − just so tired. But what can you do about it?

Haryana Dhillon: 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: That’s Dr Haryana Dhillon, who co-leads a cancer survivorship research group based at the University of Sydney. Haryana’s research has involved lots of people who’ve had treatment for cancer. Later in the episode, she’s going to explain the causes of cancer fatigue and offer some more practical strategies.

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’ve got any questions.

Before we get back to Haryana, here’s Len describing the fatigue he felt during cancer treatment.

Len: Yeah, well, I don’t get fatigued, I mean I’ve always been healthy, hardly ever sick at all. So, this was really new to me, and fatigue’s fatigue − you just get tired, you just can’t do what you normally do.

Julie: As you heard at the start, Haryana Dhillon from the University of Sydney said that pacing is a key strategy for managing fatigue. Haryana − how is the normal tiredness we feel different from the fatigue that people with cancer talk about?

Haryana: The normal kind of tiredness people describe are the sorts of the things when you’ve been out in the garden all day or you’ve been walking around, and you just feel really physically tired. Usually a good night’s sleep is enough to help you recover. So, you might have a hot shower, a hot bath and go to sleep, and the next morning you wake up and you’re mostly feeling back to normal. The kind of fatigue that people describe when they’ve had cancer and cancer treatments is really that kind of “in your bones” tiredness that just never goes away, and there doesn’t seem to be any pattern to it or anything that you can necessarily do to help ameliorate it or get rid of it.

Julie: And presumably the degree of this fatigue fluctuates with the individual but that lots of people say it’s something unusual?

Haryana: Yes, it can definitely fluctuate between people. People have different levels of tiredness or different levels of fatigue after their cancer treatment and cancer diagnosis. What you might find as well is that even for an individual it will vary from day to day. People will have a really good day and they’ll feel like they’re back to normal and they might try and do lots of things that they hadn’t been doing, and a couple of days later, the fatigue will be back − either as bad as it was or sometimes even worse.

Julie: Why do people get fatigued when they’ve got cancer?

Haryana: Well, Julie, I guess there’s lots of reasons that people get fatigued. There are many things that impact on that kind of, you know, ingrained bone-weary tiredness that people can experience that is fatigue. And I think it can start sometimes right at the beginning of the diagnosis where people are feeling overwhelmed and they’re just feeling like they’re not coping and that can sort of change what they’re doing. So they start to reduce their physical activity, they expect to not feel very well a lot of the time as well, and there’s that internal battle that people have about their bodies letting them down after a diagnosis of cancer. So, there’s a whole lot of emotional things that are going on between, almost like a battle, between your mind and your body.

Then there are all of the other things that happen around that time, that you’re thrown out of your routine. Most people will at least have a break from work if they’re working or certainly a break from their usual activities. They may have surgery, which will impact on tiredness because of being in hospital and the anaesthetics that they’re taking, or that they’re given. The pain-related aspects of a cancer diagnosis and treatment can be quite impactful as well, then you’re moving on to the rest of treatments that people have. So, chemotherapy and radiation therapy and all of those immunotherapies that people talk about now, Keytruda and things like that, that have a lot of media around them − they’re all things that will impact on the immune system and how people have, their energy levels. They’re very much associated with fatigue because there is this association with the body’s inflammatory response. Like when you’ve got the flu you can have that (feeling), you feel a bit sick and you feel fatigued, and you just want to lie down and sleep, and when you are sick (with the flu) that helps you to recover. Whereas in this situation, you have this inflammatory response which is really making you behave in a way where you’re feeling like you should be physically sick but there’s no explanation for it. So that can be very confusing for people as well in that there’s no obvious reason why they should not be feeling better, and that kind of sets up that pattern.

Julie: It must be so hard to discern causality or what’s causing the fatigue because you’re on medications for pain relief, you may be having radiation or chemo or recovering from surgery, you’ve got the emotional aspect of it, anxiety and depression can make you feel tired − there’s so many possible causes?

Haryana: You’re absolutely right, there are many, many potential causes and I guess what we kind of try and think about it, when all of those things are at an end − so you’ve completed your treatment and you’re a few months down the track, and you would expect people to start getting back to their usual level of activity and feeling better, so given time for their bodies to recover from some of those things, there are a group of people that continue to experience that ongoing fatigue, and I think what we’re starting to understand, is the levels of fatigue are very different for people. The time it takes for people to recover can vary quite a lot, so some people it might only take a few months and other people it might take many years.

Julie: And sleep disruption can be part of cancer treatment and recovery, could you talk a little bit about that?

Haryana: Sure, well, sleep I think is one of those problems that people tend not to talk about. So, when, many people describe having their first serious sleep disruption around the time that they’re diagnosed, which is completely understandable given the stress that everyone is under when they’re going through that initial diagnosis and treatment planning period. But what happens often afterwards is that people are then, particularly during chemotherapy, on lots of other drugs that will disrupt their sleep patterns. So sometimes you might be getting steroids to help manage the side effects of the chemotherapy in terms of the nausea and vomiting, and those sorts of drugs can actually make you sleep less. What we think happens is that people get into difficult sleep patterns or what we might call “poor sleep hygiene”, so that they’re not doing all of the usual things that they would in managing their sleep. They get into these habits and they’re really hard to break once people finish their treatment and come off all of those drugs that support them through their chemotherapy.

What a lot of people say is really helpful is to possibly just get some advice from either a counsellor or a nurse or a clinical psychologist, who can give you some guidance on sleep hygiene. Often it only takes one or two sessions for people’s sleep to recover but lots of people live with this on an ongoing basis thinking that there’s nothing they can do about it. There are certainly other treatments like cognitive behaviour therapy that are very good at helping people reframe their expectations around their sleep patterns and what to expect and manage that more effectively as well, that can be really helpful and doesn’t take terribly long to work.

Julie: I think it’s part of a theme of this series of podcasts − don’t assume anything is normal, speak up, ask for help and see if you can be assisted. I guess the one thing we haven’t mentioned, which can be both fatiguing and also disruptive of sleep is pain. Talk a little bit about pain and the medications that are used and its impact on fatigue?

Haryana: So I think you’re absolutely right that pain is one of those things that can disrupt lots of other things. So if you’re in pain, it may disrupt your sleep patterns. It may also disrupt your cognition and all of those things feed into how fatigued you feel as well. So, it’s this constellation of symptoms, or a “symptom cluster” that seem to be interrelated. I guess the key thing we would suggest is that there is a hierarchy of things that you could do. In that situation I would say the first thing that needs to happen is that you need to sort out the pain and get that under control because if you’re in pain, that’s going to impact on your ability to sleep. So, let’s get that on a stable footing and then perhaps we can start to look at the sleep, which then might also impact on your fatigue level and start to resolve some of those other things.

Julie: You mentioned the impact of pain and how it can contribute to fatigue. Generally pain can be well managed with medications, but the pain medications themselves can make you tired?

Haryana: Yes, that’s exactly right. I think there certainly is, you know, the kinds of medication that people are on for pain relief are often opiate-based and so things like Endone or those kinds of treatments, they certainly can make you fatigued and they can make you very sleepy as well. So, even if it’s not a fatigue response, it just makes you want to go to sleep because that’s the way it makes your body respond. But I think that the key thing is talking to people about what you need and what you’re experiencing so that you’re not suffering, as you say, without support. I think we tend to undervalue how important it is just to have someone to say, “What you’re experiencing is completely normal, lots of other people talk about it and even if there’s nothing you can do immediately, that we know for most people it will go away.” That’s incredibly empowering for patients.

Julie: Many people when they are getting their treatment for cancer can have their appetite affected, it can decrease your desire to eat enough food and so on. Could that be linked to some of the fatigue?

Haryana: It doesn’t necessarily cause the fatigue but certainly if you’re not eating well, then your energy levels are likely to drop. So, maybe it is one of those kinds of contributing factors. I think trying to maintain a healthy, nourishing diet would be really helpful, in whatever form that is, but we know that’s often really challenging during treatment − particularly chemotherapy and radiation therapy which changes their taste and all of those sorts of things. They often don’t feel like eating or definitely don’t feel like eating the kinds of foods they did before.

Julie: We’re actually recording another podcast, all about how to cope with loss of appetite and stay well-nourished during cancer treatment, and you’ll be able to find that on our podcast page at cancercouncil.com.au/podcasts. People do talk about their capacity to think clearly and remember things being affected by cancer treatment. Is that linked to the fatigue?

Haryana: They’re definitely associated and it’s a little bit difficult to tell which one came first. So, if you are tired or fatigued or you’re not sleeping very well or you’re feeling a little bit depressed that’s going to impact on your ability to think and remember. What we call the “thinking and remembering” is really cancer-induced cognitive impairment. There do seem to be some people who have some level of cognitive impairment that may not be related to the fatigue. We certainly don’t understand what the mechanisms are, so what causes that change in ability to think and remember, but what we do know is that certainly people who are fatigued will also describe that fogginess in their mind.

Julie: We’ve spent quite a long time on the problem, but I think that’s good in a sense because it affirms those that are experiencing fatigue, and it also helps family members and friends to understand that this is a major issue that can take a while to resolve. Let’s turn now to the person who is dealing with or recovering from treatment, but they still have normal life demands that they need to continue, whether it’s their own children or needing to work for financial reasons or having elderly parents or perhaps even other caring duties. Any thoughts on how you can manage feeling exhausted and get on with the jobs you still need to do?

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. It helps you then to prioritise what needs to happen and allocate the time and the energy that you have available. I think the other thing that’s really critically important is being able to talk to people about how you’re feeling and try and find, or use, whatever support is available to you. There may be other people in your circle of friends or your family who can sometimes take the pressure off for some of these sorts of things − particularly not having too high expectations of yourself. So, any given day many of us feel like we’re not coping terribly well with things or we’ve handled a particular situation badly, but when you’re feeling fatigued that can sometimes feel quite overwhelming. It’s really important to learn to be a little bit kind to yourself as well.

Julie: Yes, and if you’ve been a man or a woman with high capacity and energy and competency, to discover you need a couple of naps a day can be quite startling to your self-esteem …

Haryana: … I think that’s absolutely true and I guess the more that we talk about these sorts of things, the more that people can understand, or do learn, that it’s quite normal for those sorts of things to happen and that it does change over time. We talk about, many people have a diagnosis of cancer, and their treatment might last anywhere from sort of an immediate surgery right through to six or nine or twelve months of ongoing treatment throughout that next year. If we think how long it takes you to get to the end of treatment and how you’re feeling by that point, maybe we need to think about recovery in that time frame as well. So, it might take us three, six or twelve months before we start to really feel like we’ve got energy in the tank again.

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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 talking to Haryana Dhillon from the University of Sydney about dealing with cancer fatigue. 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 more information or any of the services we mention or to listen to more podcasts, visit cancercouncil.com.au/podcasts. We’ll go back to Haryana in a moment, but first we’re going to hear how Suzanne gradually got her energy back after treatment for breast cancer.

Suzanne: Walking was the best thing. I used to go down to the beach with the kids and my husband and we’d walk, every weekend, and during the week I’d go down with a friend, and so walking was the first thing, and as my energy levels got better, I did a little bit more aerobic stuff, bit more aqua-aerobics in the pool and it took me, it really did take for me, it took me about a year to eighteen months to really feel I could get into something really physical, and so I started with an outdoor training group down at the beach. I thought I’ll just do this for six to twelve months to get myself back on deck, and six years later I’m still there.

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Julie: Haryana, exercise is coming up again and again as a way of recovering and managing fatigue, but can you help me understand because how do you get active if you’re feeling fatigued?

Haryana: (Laughs) It’s a good question and some colleagues of ours that run a cancer-related fatigue clinic at the University of NSW will talk about the fact that exercise adds to your energy tanks. Initially it requires energy to do things, but the more that you do that, it changes the inflammatory response in your body, if you like, that starts to fix that fatigued feeling.

Julie: So, this is why they talk about “exercise as medicine”?

Haryana: Correct yes, absolutely.

Julie: And from a safety point of view, should you talk to your doctor or your team before you start an exercise program?

Haryana: One of the things we’ve learned over the years is that people find it very difficult to change their own behaviour. One of the things that can be really helpful is actually to do this in a supported way. So, many of us might start off on an exercise program and we have very high expectations of ourselves, and we do a week of jogging or something like that, something happens, it’s raining, or we don’t feel so good, and we don’t go the next day. Then you kind of fall into that pattern of, “Oh I didn’t do it then, and I’ve failed, so I can’t keep going”. So, what often helps is to have someone support you to do that, whether it’s a personal trainer or we would suggest particularly post-cancer diagnosis, that an accredited exercise physiologist would be helpful, and you can access an exercise physiologist through enhanced primary care plans for chronic health.

Julie: Okay, so in other words you can go to your GP and there might be some money available for it?

Haryana: Exactly and they’re the kind of people who can actually help you work out where you’re at physically and what you’re able to do, and plan a program to try and increase that and support you in doing it as well.

Julie: I know physiotherapists can help people work out how to get physically active as well. There will often be one on your treatment team and your GP can also help you see a physio, so that’s another option. Now another thing that’s often said to work well for fatigue is meditation or mindfulness. Why would meditation help me feel less tired?

Haryana: I think there is some evidence to suggest that meditation itself has a damping down effect on the immune system, so it changes that immune response sometimes, and it certainly seems to help people to feel like they’re more on top of things and in control. So, in a way it’s about “time out” that will help you prioritise and just calm your thinking down a bit.

Julie: So, it might manage your anxiety but potentially lower the inflammation you’ve been talking about?

Haryana: That’s correct.

Julie: Okay. We’ve been talking about exercise, but there’s many different ways to have exercise. What are your thoughts there for people who want to start very very gentle but are keen to do what’s best for them?

Haryana: Sure, I think when we talk about exercise, I’m not suggesting that everyone is going to run out and turn into a gym bunny and be on exercise bikes and weightlifting and do all those sorts of things. What we’re really talking about is gentle exercise, so it might be particularly starting with something like walking and trying to get your walking levels up and exercise programs like qi gong or tai chi, so those sort of gentle movement exercises which include some meditation kinds of components to them as well, are really very helpful and there is some evidence that they also help to impact on the immune response, so again it comes back to that mechanism of potentially changing the inflammatory response in the body and helping people to recover from the fatigue that way.

Julie: I just want to talk about this idea of returning to normal and just how long fatigue may last. I mean you’ve indicated by twelve months there should be signs of hope?

Haryana: I think that’s very true for many people, so what we tend to see is that most people will feel, will start to feel, at least somewhat better by the end of the first six to twelve months after they’ve finished their treatment, but, as I said, for other people there are ongoing feelings of fatigue that last for many years. There is a patient who participated in a webinar a few months ago, and I first met her maybe about three or four years ago and she was feeling fatigued after her breast cancer diagnosis at that time. She said to me just this last time I saw her, she was only now starting to feel like she was maybe 40 per cent back to where she was, but she just realised it was going to take her a really long time, probably a similar amount of time as it’s taken her to get to this point, to get to that 80 per cent mark. So, her expectations around recovery and how long it will take her, for whatever reason in terms of her genetic make-up or her response to the treatment and the illness, is going to take longer. I think we’re not very good at helping people work out where they fit because we don’t really understand what the interaction of factors are that make somebody more susceptible to feeling fatigued long-term.

Julie: I guess one of the questions in my mind is the relationship between depression and fatigue, because it’s my understanding that issues with anxiety and depression are not uncommon longer-term for people who have had cancer, though it may be managed well with psychology or psychiatry or medication, but it’s a factor for people to manage. So, fatigue could be linked to that, couldn’t it?

Haryana: Yes, that’s right. So I think one of the big challenges in working out, when I mentioned earlier that cluster of symptoms that can co-occur, what’s really important for health professionals to do is to work with people to try and identify what it is that may be the biggest problem here, and maybe we could address the depression and whether that came first or second doesn’t really matter to some extent. If we can fix that, or at least make that a little bit better, it may actually start other things improving as well.

Julie: Let’s just go then to people who have a severe problem. I think we’ve talked about the general group, but what if you’re finding that you’re really struggling with fatigue at any point in the treatment and recovery journey. What are the sources of help if you’re in bad trouble?

Haryana: I think again going back to your oncologist and talking to them about what’s happening and asking actively for referral to potential other places or other people who are running programs. I think I mentioned earlier that the University of NSW runs a fatigue clinic, it’s probably the only one I’m certainly aware of in NSW. So, these programs are not common, but they’re the sorts of programs where there is expertise from individual health professionals who may be willing to work with your own GP or your own oncologist or the other people who are available to you, to try and provide a program that would be effective.

Julie: Well, Cancer Council NSW has some great resources for people with cancer who want to exercise. There’s a booklet: Exercise for People Living with Cancer, as well as online exercise videos and webinars and we also offer tailored exercise programs. You can find links to all of these by going to our podcast page at cancercouncil.com.au/podcasts, and clicking through to the page to hits page for this Fatigue episode. To finish up, here’s David talking about his road to recovery …

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David: Six months after I’d finished treatment, I sort of, I don’t know if I said it to my wife or said it out loud to myself kind of thing, I went, “Oh wow, I feel pretty good.” But then twelve months after treatment, I went, “Hang on a minute, I feel even better than I did six months ago.”

Julie: That’s it for this episode of “The Thing About Cancer”. Thanks to Haryana, Len, Suzanne and David for sharing their insights. If you’re looking for more information, you can ring the 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.

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Julie: If you found this episode helpful, you might be interested to know that we’re doing a podcast about loss of appetite. In this episode, I’ll talk to oncology dietitian Merran Findlay about how nausea and other side effects can mean you lose your appetite and how you can stay nourished throughout your treatment:

Merran: I often say to people that your nutrition care is part of your overall care. You know, oftentimes with a cancer diagnosis, there’s so much you feel is outside of your control, but this one thing is within your control. We speak to not just the patient who has had the cancer diagnosis, but also the family or the carers, because they’re very often involved in supporting that person and particularly with that meal preparation.

Julie: To hear the rest of that conversation, look for the episode “Appetite and nausea” 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 you’ve been listening to The Thing About Cancer, a podcast from Cancer Council NSW produced by Jenni Bruce and Miles Martignoni.

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