The thing about cancer is that it can make you feel so afraid, not just when you are first diagnosed, but right through treatment and even once you’ve been given the all clear.
What do we know about fear and cancer? What can you do if you wake up in the middle of the night feeling overwhelmed by your fears? And how do you keep functioning when you have good reason to be anxious?
In this episode, psychologist Cath Adams returns to The Thing About Cancer to tackle these questions, and much more. She chats with Julie about why cancer-related fear often differs from other kinds of fear, and how you can manage this fear.
Taking back control
After a cancer diagnosis, people often feel engulfed by new information and might feel like things are spinning out of control.
During this episode, we look at ways to regain that control. Cath explains that a good way to share the burden is to talk openly with the people around you, including your friends and family and your health care team.
Triggers and tips
Cath describes how different stages of diagnosis and treatment can trigger fear, and offers tips to help you get through them.
We also look at what happens after treatment, once you leave the controlled environment of the hospital or treatment centre. How can you manage anxiety before follow-up tests? Do people ever stop worrying about the cancer coming back?
And what if you start to feel panicked? Cath outlines breathing activities and other useful strategies that can have a calming effect during these stressful moments. We also hear from Matt, who worked out his ways to deal with fear.
The first thing is, I found it very useful to read fact-based articles about these procedures and about the cancer I had …The second thing was just doing physical activity that needs a high degree of concentration … And then the third thing was really talking in a peer group … I found those three things very useful in managing fear.
—Matt, diagnosed with prostate cancer
Want more information or support?
If you heard something mentioned in the podcast, you’ll find a link to it below. We’ve also added links to other sources of information and support.
From Cancer Council NSW
- Cancer Council 13 11 20 Information and Support service – call 13 11 20 Mon–Fri, 9am–5pm, to talk confidentially to a health professional about anything to do with cancer
- Cancer Council Online Community – a supportive online community for people affected by cancer
- Coping with cancer – support online, in person and by phone
- Easy-to-read information about cancer – cancer types, treatments and issues
- Fear of the cancer coming back – more information from Cancer Council about fear after treatment finishes
- Coping with a Cancer Diagnosis podcast – Julie McCrossin chats with psychologist Cath Adams about life after a cancer diagnosis, and how to ride the emotional roller-coaster that often follows
- Fear of Recurrence webinar – a panel of experts discuss the topic of “What if my cancer comes back?” and answer questions from a live audience
- Exercise videos and information – a series of easy and quick exercise videos and more information about how to get involved in Cancer Council’s survivorship programs
- Coping with a Cancer Diagnosis podcast – Julie McCrossin chats with psychologist Cath Adams about life after a cancer diagnosis, and how to ride the emotional roller-coaster that often follows
- Sleep and Cancer podcast – Julie McCrossin chats with psychiatrist Catherine Mason about all the ways that cancer can disrupt your sleep and what you can do about it
- Family Dynamics and Cancer podcast – Julie McCrossin chats with social worker Ray Araullo and psychologist Cath Adams about the impact that cancer can have on family relationships and how you can manage conflict and support each other
From other organisations
- Lifeline 13 11 14 – call 13 11 14 for 24-hour crisis support from a trained health professional
- beyondblue – call 1300 22 4636 for information and advice about anxiety and depression at any time of day or night
- APS Find a Psychologist – search for qualified and trusted psychologists affiliated with the Australian Psychological Association by psychological issue and location
- Breast Cancer Network Australia – fact sheet on cancer recurrence for people who have been diagnosed with early breast cancer
- National Coalition for Cancer Survivorship (US): Cancer and Fear – information on the three common fears experienced after a cancer diagnosis
- American Cancer Society: Anxiety, Fear and Depression – information about the effect of a cancer diagnosis on your emotional health
Transcript of Episode 11: Managing Fear
The Thing About Cancer podcast, Cancer Council NSW
You’re listening to Managing Fear, an episode of The Thing About Cancer podcast.
[woman] The very essence of all cancers is a change in the way that cells divide.
[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.
Julie McCrossin: Hello, I’m Julie McCrossin and today, the thing about cancer is that it can make you feel so afraid. Not just when you’re first diagnosed, but right through treatment and even years later. What do we know about fear and cancer? What can you do if you wake up in the middle of the night gripped by worrying thoughts? And how do you keep functioning when you might have good reason to be anxious?
Cath Adams: It’s overwhelming at first, it really is frightening. But as it becomes a little bit more familiar, that fear will settle and it becomes something that, that pops back into your consciousness but isn’t constantly there like it is at the beginning.
Julie: We’re talking to Cath Adams, a clinical psychologist from the Hunter New England Area Health Service, Genesis Cancer Care and the University of Newcastle. Cath has listened to the fears of many people with cancer. Just to be clear, this podcast contains general information only, so we recommend that you talk to appropriate professionals about your individual situation and you can also call Cancer Council 13 11 20 if you have any questions.
We’ll hear more from Cath in a moment, but first here’s Matt talking about how he felt the night before he had to go to hospital to confirm a diagnosis of prostate cancer.
Matt: Things start to really pile in there, you know, and the adrenaline kicked in and, ah, I remember staying up quite late that night going ‘okay, right. Am I ready? No, I’m not.’ Walking around the house a bit more. ‘Okay, am I ready? Not I’m not.’ [laughs] Let’s do another lap! You know, glass of milk this time! ‘Okay, am I ready? Okay, alright, bring it on.’ But you know, it took quite a while, a number of hours before I could really just say, ‘okay, well I’m going for the first test!’
Julie: At the start of this episode, psychologist Cath Adams spoke about learning to live with the fear that comes with a cancer diagnosis. Well, welcome Cath. I’m interested in why you think the word ‘cancer’ strikes a particular fear into people’s hearts? I mean, what is it about cancer that carries such emotional weight?
Cath: Look, I think cancer − and you’re right, it’s interesting − it brings on an existential crisis.
Julie: What does that mean?
Cath: It means it makes us question our mortality. And why does it do that more than heart disease? Cancer in our mind is emotionally laden. So for everyone that’s diagnosed there’s a part of their brain that thinks, ‘I don’t want to die?’
Julie: And we must say of course, it doesn’t mean you’re going to die.
Cath: It doesn’t! We cure more people than die from cancer, you know. So, and that’s been a shift that’s only been recent though and I think that’s part of what contributes to this fear is, you know, when we think back in our own history of cancer, maybe 20 years ago when Uncle Frank was sick and he was dreadfully ill, and the treatment made him dreadfully ill. That’s what we think cancer means. And yet in the last 20 years, the advances that we’ve made in treating cancer are enormous. And now it is a disease that we’re beginning to consider a chronic disease but we haven’t caught up in our minds and our hearts yet.
Julie: And when you say a chronic disease, what does that mean?
Cath: A disease that we live with.
Julie: So what you’re saying is that there’s almost a community, cultural memory about how cancer has been that, as yet, is not overcome by the new survival rates, the better treatments, the better results…
Cath: Absolutely, absolutely. And it’s a very deep-seated fear because it’s about our mortality.
Julie: I guess another factor that I think sometimes makes it seem fearful, is that people can be apparently perfectly healthy and then suddenly they’re told they have cancer. Can you explain, why does that happen and what’s the impact psychologically, not just on the person with the diagnosis but on the family as well?
Cath: Look, cancer is tricky like that in that… we can have a cancer but it’s not in a major organ, it’s not in a part of our body that alerts us to the problem. And so we’re quite fit and healthy. I’ve worked with people who were… one man I can think of who was diagnosed two weeks after he’d finished an ultra-marathon. And he had advanced bowel cancer. You know, we don’t have those symptoms and so when we get the diagnosis, we can’t look back and go, ‘oh, I guess that was happening.’ You know, whereas with things like heart disease, most people can recognise that they’ve had symptoms for some time. And so cancer psychologically is very difficult to deal with because we’re unprepared and our family is often even less prepared.
Julie: So there’s the shock of the word but there’s also just the shock that you’re apparently seriously ill when you feel perfectly okay. But just coming back, this is called managing fear.
Julie: And how do you know you’re afraid? I know that seems like an odd question but there’s so much shock and confusion associated with a diagnosis. I, certainly, in my own experience of being diagnosed with cancer, it took me a while to realise, ‘goodness me, I’m scared! I’m just really scared,’ almost like a little child. So, how do you know if you’re scared?
Cath: Often one of the things that happens when we get a diagnosis is we actually become a little bit disconnected from the messages that our body send us, for the very reason that I wasn’t feeling unwell, how can I have cancer? I don’t know that I can trust my body. So often we miss that clenched feeling in the pit of our stomach, we miss the tension that’s there, we miss the fact that our sleep’s starting to become disturbed. You know, we miss the fact that we’re a bit jumpy − we’re just on edge all the time. And so often it’s just beginning to reconnect to our bodies but often it’s just hearing someone say, ‘this is scary. It’s okay to be afraid.’
Julie: And when you’re actually talking to someone’s who got the diagnosis, what are the key things they say they’re afraid of − once they realise they’re afraid − what are the things they’re most afraid of?
Cath: Oh, Julie, it’s really interesting because that fear exists on a continuum that is from the fear of dying to the fear of living. You know, it’s across the board. It may be that I’m fearful of leaving the people that I love but often when I’m working with people at the end of treatment, they’re fearful of what’s tomorrow going to be like. I don’t know what this new unknown world is, I’m so frightened of my cancer coming back, I’m going to stay inside, at home, on my own, where I’m safe.
Julie: So that’s the fear of recurrence that so many people speak of. I want to move in a moment to, you know, some of the strategies for managing fear, but just before we get into a bit of detail, if there’s someone listening to this and they’ve had a recent diagnosis, or someone they dearly love has had a recent diagnosis, what’s your key message to people if they’re feeling overwhelmed?
Cath: I think it’s really important to share that feeling with everybody, with the people that you care for and are caring for. We have to be open about the fact that this is a really difficult thing to experience, it impacts enormously on us and our families.
Julie: And if you are a carer listening to this, what’s your advice? Should you hide how much you’re struggling in order to not frighten or upset the person who’s sick?
Cath: Julie, that’s often our first response, we protect the people that we love. But honestly, if we are able to genuinely sit down and say, ‘I’m so scared, I’m scared for us. I’m scared for you, I’m scared for me.’ One of the things that happens during the ‘cancer journey’, as we call it, is people become separated by their fear. We’re all too busy being brave for one another and we forget to just sit down together and cry and say, ‘this is scary.’
Julie: It must depend a bit too on the quality of your relationship…
Cath: Look, it does.
Julie: If you have a partner or, um, family members you get on with or good friends. I mean, suddenly the quality of your friendships, your intimate relationships, is going to really matter isn’t it?
Cath: It is. And look, often we will find that people we thought we could rely on disappear. And people we would never expect to step up suddenly appear with a meal at the front door. You know, so it’s a time to be really open but that’s really hard because when you’re scared, experiencing any change is much harder, you know. So it makes us vulnerable.
Julie: And if you’re finding that a cancer diagnosis, and the fear that comes with it, have unsettled your relationships with those close to you, you might be interested in another podcast in this series about the impact that cancer can have on family relationships. You can find that Family dynamics episode on our website at cancercouncil.com.au/podcasts.
Cath, let’s just go through the triggers of fear along the patient journey. So you’ve got your moment of diagnosis, waiting for tests, waiting for treatment to start − and it can often take quite a while − and those delays can be a time of great uncertainty and fear, can’t they?
Cath: The less we explain to people why those pauses happen, the more fear increases. So, often I will sit with people and say, ‘look the reason that it takes a week for your pathology to come back is the amount of work the pathologist is doing to look at your cells individually.’ If we actually explain the process, that reduces the fear. If my pathology is taking a week and I don’t know why, I will assume that it’s because it’s terrible. So, part of managing that fear is providing information about it, and the more uncertainty, and that’s why those waiting periods are hard because I don’t know what’s going to happen next and I don’t understand.
Julie: So, find someone in your team who’s responsible for communication and stay in touch. That’s a good fear management strategy. And then there’s the actual treatment − are people afraid of the treatment itself before it starts?
Cath: Yes! We need to do a much better job of explaining the treatments to people. Again, we tend to go back and think in our own history of people we know who’ve had treatment. So if we know people who’ve recently had treatment, often, that’s not as scary. But if we think backwards to the time when chemotherapy meant that you were incredibly physically ill, that you would be vomiting uncontrollably, things that we can manage these days, you know, that’s the thought that people have. And, look, people often don’t know the difference between, say, chemotherapy and radiotherapy. They don’t understand all of the different types of chemotherapy that you lose your hair with some, that you don’t with others. You know, we don’t… and so anything we don’t know is fearful. We’re not very good with not knowing what’s going to happen.
Julie: And you can either get side effects that are fear-inducing…
Cath: Yep, yep.
Julie: Or you don’t get side effects and then think, is it working?! You know, it’s almost like you can be afraid whatever happens, so what’s your advice there?
Cath: Exactly. Look, one of the things that’s really important with treatment is to focus on the fact, often the fear is about ‘my life is out of my control’. But during treatment, you can take some of that control back. You can choose to attend your appointments, you can choose to take your pre-medications, you can choose to do all of those things and that reduces our fear because that’s contained. So it’s really important to become aware − what are the things that I can do rather than focusing on the things that I can’t. And talking to people, checking in with the staff, asking the questions. There are no silly questions.
Julie: [agreeingly] Hmm. And also asking, ‘what can I do to help myself?’
Julie: ‘What can I do to help myself cope with the fear?’ Because they’ll have seen so many people go through this.
Julie: Now, when treatment ends, that’s another moment that can be absolutely terrifying. Now, can you explain why?
Cath: Look, it’s ironic because we think we would finish treatment and feel fabulous because we’ve done treatment but that’s when that big question mark falls in front of us and says, ‘well, what happens now? How do I know that it’s gone?’ And when we seek reassurance from our doctors they say, ‘well, look, I can’t really tell you anything yet.’
Julie: Because sometimes there’s a reasonable pause before you have another big test to see if it’s worked!
Cath: Exactly, we have to wait to let the effects of the treatment settle everything down before we look to see what it’s done but we often forget to explain that to you.
Julie: And the thing that I found difficult at the end of treatment was I left the mothership, the hospital.
Julie: It becomes like this space station that you go to all the time and all your crew are there and suddenly you’re at home… How can you manage that?
Cath: Look, it is really important that you’ve built a support network through that time as well. And one of the people that we often forget when we’re on treatment is our GP. And it’s actually really important to connect back with your GP because they’re going to be your primary pod back to the space station if you need to get back in. But it’s also about looking at whether there are support groups that are available to you. Tapping in, whether that’s online or in person, and again, Cancer Council 13 11 20, they’ve got a whole heap of information about that. But also engaging in some self-care, so looking at doing some mindfulness training, you know. Looking at ways, strategies to calm myself and looking at who I can contact if I’ve got fears about what’s happening with my body.
Julie: [agreeing] Hmm. Follow-up appointments, not just big tests after three months, which seems to be a common one, but there’s, depending on your cancer, you might have a number of years of quite regular follow-up appointments. Can they be reassuring because you’re being checked or can they induce anxiety and fear?
Cath: They can do both things. And for most people there’s a sense of gnawing anxiety and for some people it might be the day before, for some people it might be two weeks before. You know, it’s different for all of us but there’s just that sense, and that’s because our very basic brain, and this is where the fear comes from, our very basic brain, our amygdala and our hippocampus, our limbic system, has learnt that the hospital can be a bad place. And so we actually have a visceral reaction to having to go back to the hospital, we have a fear reaction that’s not based in our thoughts, it’s based in the bit of our brain that’s responsible for us stepping out from the curb and seeing a bus and stepping back again. It’s an instantaneous fear reaction so, you know, that’s often the thing that’s happening for us when we come into follow-ups, is we know that bad things can happen.
Julie: My closest friend has also had cancer and what we say to ourselves is, we have this self-talk, we say, ‘how lucky are we to live in a country where there are sufficient resources that we are regularly checked.’ And that’s what we say to each other.
Cath: It’s that positive re-framing, is really important, you know, it’s the same thing as looking at what I can control. What is the good thing about having follow-up − that I’m having it.
Julie: Then there are triggers even into the longer term, the date that you were originally diagnosed, or um, when you had a major treatment or… tell us a little about that. I assume it doesn’t affect everybody that way but just some people?
Cath: Look, it does vary, you know. Anniversaries tend to be something that we respond to and that’s on a really symbolic level. You know, that’s just… again, it’s representative of something and the anniversary of our diagnosis is representative of one of the worst days of our life, you know, and so there’s a part of us that will tap back into that. Some people celebrate their anniversaries and some people are horrified by them, you know, and it’s really important to recognise what you’re feeling is normal for you. It’s the situation that was abnormal. This is a normal response, this fear is a normal response to an unexpected abnormal situation.
Julie: You’re listening to The Thing About Cancer − a podcast from Cancer Council NSW. I’m Julie McCrossin and I’m talking to psychologist, Cath Adams, about how you can manage fear after a cancer diagnosis. If you have any questions about this topic, or you just want to talk to someone about your concerns, you can call Cancer Council 13 11 20. For links to any of the resources or services we mention, or to listen to more podcasts, visit cancercouncil.com.au/podcasts and click through to this Managing Fear episode.
In a moment, I’m going to ask Cath for some realistic practical strategies, but first we’ll hear from Matt again and how he learnt to manage fear during and after cancer treatment.
Matt: Look, I think there’s three things. The first thing is I found it very useful to read fact-based articles about these procedures and about the cancer I had, I found that very comforting. Um, the second thing was, just doing physical activity that’s very… ah, that needs a high degree of concentration. So soccer, surfing − I mean you can’t do either of those two things unless you’re really concentrating, and it was good because, you know, I’d come off the pitch or come I’d come out for a surf going, ‘I don’t remember what was worrying me now.’ Now that’d build up again but it would bring the baseline down which was very useful for me. And then the third thing was really talking in a peer group. Although I must say, what I found even better was actually finding someone one-on-one that understood me as a person and had some understanding of the situation. That, that was a real blessing, that was terrific! Ah, you know, that guy was great, just a listener. And I found those three things very useful in managing fear.
Julie: Cath, I’m keen to hear about your suggestions for managing fear but, first, I’m curious about fight or flight. You often hear people mention that as a response to fear − what’s that about?
Cath: That’s that very basic brain literally recognising that there’s danger and preparing to either fight it or run away from it. And what can happen when this fear response becomes chronic is that’s kicked in all of the time and so we become really edgy, we’re really anxious, we worry about everything. We get an ache in our little toe and we think that that’s our cancer back, you know. That’s the sort of thing, and when that type of fear starts to happen, that significantly impacts on our ability to function in our day-to-day life. That’s when someone might think about coming to see someone like me.
Julie: Just before I go on to managing fear in the longer term, there’s just one acute thing that I want to ask you about and that’s panic attacks…
Julie: What is a panic attack? How common are they? And how do you manage it?
Cath: Panic attack is the ultimate fight or flight response and it’s basically where our brain has interpreted that we’re in a situation that’s life or death. Or someone that we love is in that situation. And a panic attack is that whole system getting us ready to either physiologically fight, or run away. So the way our heart pumps changes, the way our circulation works changes, the way our fingers and feet feel sensation changes. It affects our whole physical body and it also shuts down our mind to just look at: what are my options in this place. And so we can’t access the more logical part of our brain when we’re panicking because we are literally looking at a way to get out of this situation.
Julie: So what do you do?
Cath: So the most important thing you can do is try and not listen to that story and often coming back to the breath is the most useful thing to do. And there’s a very simple breathing pattern that you can follow, so if you actually just become aware of your breathing, and breathe in, and breathe out, for the same length of time. So the easiest way to do it is, breathe in and just count. If that’s 4, breathe out for 4 and then just hold your breath for 4. And then breathe in for 4, and breathe out for 4 and hold your breath for 4. And if you do that about 10 times, physiologically you switch on your parasympathetic nervous system, which is your ‘rest and digest’ system. So it actually physiologically makes your brain settle down.
Julie: There’s both short-term and long-term characteristics of fear. Again, I just want to go into a little bit more detail about the sort of physical and psychological signs that, ‘Oh, golly, I might need to see a psychologist, a psychiatrist, a nurse.’ Or whoever, I sometimes think whoever it is in your team that you feel comfortable talking to.
Cath: Exactly, that’s really important.
Julie: Because personalities differ, don’t they? And they’ll refer you on if needed, but tell us about the short-term things, like how you sleep and eat changes.
Cath: Really, really important stuff. If you notice that your sleeping patterns changed, and often it’s difficulty getting to sleep, or you might fall asleep easily but you wake up during the night, you know, and the witching hour hits and your thoughts are going around and around and around. That’s often the first indicator that something is going wrong, that we’re becoming chronically aroused. So once that starts, what are the simple things that we can do maybe to manage it? One of the easiest things is to do some work around becoming able to attend selectively to things. And by that I mean, pay attention to something that isn’t that anxiety story or that fear story or that worry story.
Julie: Give me an example.
Cath: So an example is − the easiest one and the most common one we use when we’re working with people is − instead of getting caught in the story that’s happening in my mind, I just become aware of the fact that I’m breathing. And I’m breathing in, and I’m breathing out. And I focus on my breath, and breath is a really good thing to use because we’ve always got it. So we’re just pulling our attention to that, and if we actually attend to that − and when we lose concentration, we gently bring the concentration back − the worry or the fear or the anxiety loses its power.
Julie: Could you share a few more of these practical strategies?
Cath: Look, there’s a few quite simple ones. Um, one is literally a very cognitive strategy and if you’re thinking these thoughts, just imagining in your mind a stop sign or a red traffic light and saying to yourself loudly in your mind, ‘Stop!’ It’s enough to push us out of the story. The first trick is though, we need to recognise that we’re caught. We need to recognise that this fear story has trapped us and it’s pulling us into a reality that’s not real yet, it doesn’t exist.
Julie: It’s interesting because you hear people say, ‘become an expert in your own cancer. Learn all about it and then control what you can control.’ And I have mixed feelings about that, what are your thoughts?
Cath: Look, I think, it’s important that you do have an understanding of your cancer. It’s important that you can identify what you can control. But sometimes we push ourselves too hard to know too much, and that drive to be the expert can push us to learn things that are unhelpful, you know, to ask questions that are unhelpful. I think it varies for every person. Some people do become an absolute expert, and that’s how they’ve lived their life. If you’ve lived your life not knowing what’s happening, being a bit cruisy, just letting other people makes decisions − that’s how you should deal with your cancer as well, you know? And it’s one of the important things to talk to your treating team about is that decision-making, you know, how much do I want to make all the decisions myself and how much do sometimes I just want you to tell me what I have to do? You need to communicate that fact − it’s really important.
Julie: If you are someone who tends to trust authority, one option can be to simply say, ‘let me know what I need to know when I need to know it.’ And I think that can be helpful because you might have a cancer and you might only get a fraction of the side effects to the treatment that are listed in the relevant information, do you know…
Julie: So it’s not an easy thing to decide how much to inform yourself and how much not.
Cath: And how do you know when you don’t know? And that’s… I think one of the things I always say to people is, it’s actually really important to remember that you need to be your own best advocate during this. Don’t assume that people will tell you what you need, don’t assume that people won’t tell you more than you want to know, but speak up. How do we speak up to a doctor? They’re actually human beings, you know, and if you’re honest with them and say exactly that, ‘I need you to tell me what I need to know when I need to know it, but please don’t overwhelm me.’
Julie: And of course if you are an information seeker and want to find reliable information, a good place to start is the Cancer Council website. We’ll put links on our podcast page at cancercouncil.com.au/podcasts. Just click through to this Managing Fear episode. And you can always call Cancer Council 13 11 20, and they can answer your questions and send you free booklets on a whole range of topics.
Well, Cath, I’ve heard that having a plan is important − can you explain why?
Cath: Look, as human beings, we like to have a bit of structure in our life, you know. We can pretend that we don’t have structure, and if you think that you don’t have any structure in your life, I want you to get in the shower tomorrow and do your routine differently − and just see how much subtle structure there is. If we don’t have a plan, we don’t know what’s happening and that sets that very basic bit of our brain off again. It makes us worried. We don’t… we’re out of control, we don’t know what’s happening, so a plan is useful in that it gives us a sense of there’s something going to happen next.
Julie: And can you give me an example of what a plan might mean?
Cath: Look, a plan for some people will be extremely detailed and they’ll have to know every appointment and every appointment time and where they’re going to park. And some people will just have a general idea that, ‘okay, after I’ve finished treatment, I’ll have an appointment with one specialist in three months, and then the next one another three months after that.’ You know, it can be as detailed or as loose as you need it to be but we all tend to like the plan.
Julie: And should you build into your plan the expectation that fear will strike you to varying degrees of intensity throughout the journey?
Julie: And you have, um, strategies, regular massage, doing… finally getting to yoga and mindfulness! [laughs] That was me. [laughs] Um, another thing that I personally did was to keep a record of all my medications, like a clipboard − literally a clipboard − as if it was at the end of my bed. Because I had sooo many things to do, if I didn’t keep a record, I didn’t know what I’d done ‘cause I couldn’t remember. So those sorts of rhythmic structures can be reassuring?
Cath: They really can be and, look, information like that is also really useful for your treating team as well, you know, so don’t underestimate the value of having information to take in. But getting a routine around follow-up appointments can be really helpful, you know, so going for lunch with friends the day before, trying to do something that’s a bit relaxing. You know, looking at what are some of the exercises I can do help me get to sleep. You know, making sure that I do those for the nights for the week before. Simple strategies, but recognising, yeah, fear is going to hit me.
Julie: We haven’t talked about exercise. We know it’s good for us, but how useful is it in managing fear?
Cath: Oh look, so one of the things that exercise does, again, is engage our brain differently. So it gets our brain working differently and one of the after-effects of exercise is, again, switching on our parasympathetic nervous system. And so, the physicality of exercise helps get rid of some of that extra energy and anxious energy, and the rest afterwards helps us to recover. So it’s actually… exercise is one of the most useful things we can do in terms of managing our mood.
Julie: And it helps with sleep!
Cath: It does help with sleep, it helps with everything, Julie, we just can’t escape that fact. But in terms of, if I’m working with someone around interventions to manage their anxiety, exercise is one of the first things I will do. And look, it may not be going to the gym and pumping iron, it may actually be doing some yoga, it may be doing some slower movement-based exercises because that can help bring our attention back to our body.
Julie: Cancer Council actually has a booklet and online videos showing some simple exercises, and it also runs exercise programs in the community and over the phone. You can call 13 11 20 to find out about these or look for links on our podcast page at cancercouncil.com.au/podcasts and then click through to this Managing Fear episode.
Cath, is a good bit of advice to tap into what’s helped you cope with challenge or fear in the past and that might assist you now?
Cath: Cancer isn’t something that means we have to cope differently. It means we have to think about what’s gotten us through in the past, and as long as that’s a healthy option, to follow that option through. So, do I cope by getting lots of information? Or do I cope by putting my trust in people around me? You know, how do I… what do I do? What are my coping strategies? Do I cope by talking to people about it or do I cope by not… Do I cope by dealing with it myself until I get to a point where I feel capable enough to talk to other people? We have to trust ourselves.
Julie: So where do I go for help? What are the core places? I’ve accepted I’m afraid at whatever point in this journey, who do I get help from?
Cath: Look, the first step should always be someone you trust, you know, and that will probably be someone in your family or a really close friend. It might be your GP, it might be someone on the treating team, it might be the cancer care coordinator, you know, it might be your specialist. Um, but it’s just talking to someone and saying, this is how I’m feeling. And just getting their feedback, you know, that can help us frame it in, ‘okay, is this something that I need to do something more about?’ You know?
Julie: Tell us about the sources of help, professional help, and the different sorts of people you’d go to for different purposes?
Cath: Look, there’s a range of people. I guess if you’ve left the spaceship of the treatment centre then your GP is going to be the first person that you contact. And the GP will have a really good knowledge of local services that you can attend and they can do an enhanced care plan or a mental health care plan for you to see either a social worker or a psychologist in the community to help deal with those issues. If you’re still having your treatment, there’s going to be services that are available to you within the treatment centre, and so talking to your doctor or to the care coordinator about what’s available − and that might be a psychologist, might be a psychiatrist, might be a social worker. We have a lot of people who have spent a lot of time specialising in these areas and all of us work in cancer centres. So your team will be able to direct you as to which arm of the service they think that you would best, you know, be served by. So it might be talking with the social worker, it might be some counselling issues − dealing with some family issues, dealing with financial issues. If you’re needing specific behavioural strategies and support around what I can actually do to start changing and developing skills in this area, it might be the clinical psychologist. And if you’re really struggling with the mental health aspects and the anxiety and depression impacting to a degree that you can’t function at all, that’s where the psychiatrist comes in with their expertise in which medications are best suited for you.
Julie: There is a financial dimension to this I think we need to explain because once you leave the hospital team, you can get a certain amount of financial support for a psychologist but with a psychiatrist you may be able to be bulk-billed in certain circumstances. Can you explain?
Cath: Yes. So, under the Medicare arrangements, um, the limitations around visits to a psychologist, or to a counselling social worker, so there are also options to see social workers under the Better Outcomes for Mental Health Care program. You can only see a limited… you can have a limited number of sessions with a psychologist. Those psychologists might choose to bulk-bill, not many do because of the cost of private practice, but some of us do. And some psychiatrists will also choose to bulk-bill under the Medicare arrangements, some will charge a fee. Some people have access to those services through their private health care as well so it’s also good to see whether you’ve got… Often that’s not covering the entire fee, but will be a set, for a set amount over a 12-month period.
Julie: So seeing a social worker, for general advice, may be useful anyway…
Cath: Yeah, absolutely.
Julie: …because they’re very good aren’t they, at referring people on?
Cath: Social workers have an enormous knowledge of things that you can access and of skills that you can use and build, um, and they have really good knowledge of who exists to refer on, if that’s necessary. Absolutely.
Julie: I know you’ve referred to the general practitioner as a primary source of referral and guidance, but is there any way you can choose a psychologist and get a sense of their area of expertise, get information about a psychologist?
Cath: Absolutely. The Australian Psychological Society has a website that you can go to, and it’s got a special section called ‘Find a Psychologist’. And in that section, people list their specialties so it just gives you a little sense of, ‘yes, that’s the person that I want to see.’ So that’s probably the easiest way to find someone.
Julie: And we’ll put a link to that on our podcast page at cancercouncil.com.au/podcasts and you can click through to the Managing Fear episode. You can also call Cancer Council 13 11 20 to talk through any of your concerns, or to find out what services are available in your area. And I’ll just mention Lifeline too, Lifeline 13 11 14, because there can be times you might want to talk to someone in the middle of the night and Lifeline offers a 24-hour service. So that’s Lifeline 13 11 14.
Now, Cath, where does medication fit into this question of managing fear, because my understanding is there are some cancers where 50, 60 even 70% of people do have a period of anxiety and depression. So, does medication have a role to play in managing fear?
Cath: Absolutely, there is. And that’s why it’s really important that if you’re experiencing these symptoms and they’re impacting on the way you’re able to live your life, you should talk to your specialists about that and consider seeing a specialist in our mental health. Because it’s… our mental health is part of our overall health and one of the things that we know that these cancers are doing are impacting on the way our brain is working. And our brain’s not working as well as it could, you know, it’s not working normally, it’s working to, oh, 50% capacity? We’ve got medications that can settle that back down, you know. If you have back pain, you will take pain medication to settle it down. If your neurotransmitters aren’t working properly, there are medications like the anti-depressants that can settle that back down.
Julie: And neurotransmitters are in the brain and they affect our mood…
Cath: They’re in the brain, they’re in our heart, they’re in our gut − they’re all through our body, they affect all of us and so it’s actually a really important, for some people, they can’t step out of that depression or that fear without the medication there to support what’s happening physiologically in their brain.
Julie: What about using medication to ease fear and anxiety before particular tests or procedures? Say, taking a mild sedative before an MRI.
Cath: Often people, um, medical professionals are hesitant to prescribe those drugs that basically manage our anxiety really effectively because we become really dependent on them. But they’re sooo effective in short-term use, so having a single dose before you have an MRI scan, can be the thing that gets you through. We often use them routinely for people who are having treatment for head and neck cancer and they need a mask, and that’s a pretty difficult process, so for the treatment you take one tablet before you go in for treatment. It just takes the edge off that anxiety, so that’s certainly something. If you’re claustrophobic and you have to go in and have a scan, a bone scan can be terrifying, just saying to the doctor, ‘I really struggle with these, could I have something to settle me just that day?’ is a really useful question to ask.
Julie: What do we say to people who find it very hard to accept that they’re afraid? That they’ve always been courageous people, they might even work in the army or in ambulance services or, you know, they’re just generally capable, strong, brave people and suddenly they find themselves with diarrhoea and wobbly hands and frightened like a child. What do we say to them? They’re having real trouble accepting, ‘My god! What’s happened to me?’
Cath: Because literally what is happening is fear that affects us as if we were a child. This is fear that affects my very existence, you know. And we can be in war zones, we can be in all sorts of traumatic instances, but if we don’t interpret that as fear that directly could impact on me − it doesn’t have that same impact. But when it’s our body, there’s nothing more me than my body and so this fear is overwhelming. And so part of it is just explaining to people like that, this is a normal reaction to a direct threat. You can’t ignore the fact that this is happening to me, and that’s why it’s so strong.
Julie: And often compounded by loss of weight, lack of normal nutrition, disruption to sleep…
Cath: Disruption to sleep is such an important one.
Julie: With family, what if I’m the patient and I think I’m doing pretty well. I’ve gone to my multidisciplinary team and I’m getting help from everybody who can breathe or talk, but I think my partner, or my close friend who’s helping me, is really struggling. What’s your advice there?
Cath: Look, I think one of the things we often do is not say to our partner or close friend, ‘I’m really worried about you. It would help me if you went and talked to someone about this.’
Julie: Well, someone’s listening to this and they’ve only recently had a diagnosis and they’re now thinking, ‘my goodness, there’s now a forest of fear that I have to negotiate.’ What’s your reassurance message to them about going forward to the future?
Cath: That it is a forest, but it’s a forest that has big clearings. And there are periods of time where that fear will settle, and part of the journey is learning to live with the fear and managing well. It’s overwhelming at first, it really is frightening. But as it becomes a little bit more familiar, that fear will settle and it becomes something that pops back into your consciousness but isn’t constantly there like it is at the beginning.
Julie: And you’re not alone. You’ve got your team at the hospital or treatment centre, friends and family, hopefully, and a whole range of support options through Cancer Council 13 11 20.
That’s it for this episode of The Thing About Cancer, thanks to Cath and Matt 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.
If you found this episode helpful, you might want to hear more from Cath Adams in our podcast on how cancer affects family dynamics. In that episode, I talk to Cath and social worker Ray Araullo about how families can best work together to get through a cancer diagnosis.
Ray: So when I think of conflict, conflict happens on a good day in life let alone in a day where someone steps into your life and says, ‘Someone that you love has their life at risk now. Someone that you love is living with cancer.’ So conflict is relatively normal. What’s abnormal is that you’re in this circumstance, you’re in this sort of somewhat traumatic circumstance.
Julie: You can find that Family Dynamics episode on our website at cancercouncil.com.au/podcasts.
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.