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Yes, it’s hard to put up with cancer, but isn’t it also true that you’ve had to stand up to challenges before? Isn’t it true that you’ve had to come up against problems, against pressure, you had to deal with uncertainty, so is there anything that’s helped you then? Something that’s made things easier? Something that you could perhaps apply to your life right now? This is just one cool strategy that you’re going to hear about from Lisa. Lisa Beatty is a psychologist at Flinders University in Adelaide and she has developed this fantastic online program called: Finding My Way, that helps you and me to deal with cancer physically and mentally. Here is what we cover in this conversation:
- Common hurdles for all cancer patients (including you)
- How to deal with depression during cancer
- Why you should not put off things for later (during treatment and beyond)
- Building momentum in recovery
- How cancer stereotypes get in your way
- Why cancer is a family illness
- Getting distress help without leaving your home
- and much, much more!
Cancer Council SA launches Finding My Way
Depression and anxiety in long-term cancer survivors compared with spouses
Episode 023: Getting The Support You Need, On Your Terms
Joe: Lisa, you obviously have seen a lot of folks who struggle with the mental side of cancer and I guess some things come up over and over again. What are some of the commonalities that you see?
Lisa: Yes, there are quite a few commonalities, regardless of what sort of cancer type people have or whether it’s advanced or early stage cancers, there are lots of similarities in terms of the initial emotional impact. There’s the initial shock of the diagnosis. I see a lot of people struggling with guilt about what they’re putting their family through, also a lot of distress. It might not necessarily be at the level we’d say is clinically significant depression or a depressive episode, but it’s definitely impacting on their ability to enjoy their life and do their normal activities.
Also, things like a lot of worry and fear during treatment, about how their treatment is going, whether it’s working, uncertainty about how their test results are going to be going as they go through. There are lot of those, those are the common worry, fear, anxiety, distress, and sadness and depression can be really prevalent as well. We know that when people are going through treatment, depression is the most commonly diagnosed problem for people. Where they actually have lost interest and pleasure in normal activities and they’re feeling consistently down and sad and depressed, as well.
They’re the most common hurdles that we see. Then on top of that, there are also things like a lot of people struggle with body image changes. If they’re going through things like chemotherapy, then their body image can really quite drastically change. A lot of hair loss, not just on their head, but whole-body hair loss. Also, people who have had surgery or might have, for example, if it’s bowel cancer, they might have a stoma for the first time. It’s a lot to adapt to.
I think that’s the biggest thing, summarising all of that into one sentence. It’s a huge adjustment. We would tend to just say that these are people having difficulties coping when they’re adjusting. They’ve never had to adjust to anything on this scale before.
Joe: Yes, absolutely, Lisa. You mentioned clinically significant. When we’re talking about depression or anxiety, clinically significant, does that mean that it’s similar to depression you get outside of cancer?
Lisa: Yes. I think that’s a really good point to make, that depression in cancer is the same as depression in the general community, in terms of how it looks. It can be a bit difficult to tease apart somethings because the side-effects of the cancer treatment can overlap so much with the common symptoms of depressions. Things like feeling really fatigued, that’s often a side-effect of the treatment, obviously, and it’s also one of the core symptoms of depression.
What we tend to look at in worries about the loss of interest in pleasure, rather than whether people are able to do activities because of fatigue. When we’re talking about whether it’s clinically significant, we’re talking about whether it’s at that level where there are two key criteria, whether it’s at the level of severity, whether it’s actually affecting people’s enjoyment of life, that they’re feeling so down that they’re just stressed all the time and it’s really impacting their joy for life. The other one would be if it’s impacting on their functioning, their ability to do their normal activity. If their depression or their distress or anxiety is at the point where they’re having trouble doing their normal parenting roles, or getting themselves to work, and again, this can be a bit difficult to tease out because some of these roles are affected by the cancer treatment. Yes, if it is at that point where it’s actually having that knock-on effect in other areas of their life.
Whereas, I think everyone will have some level of distress when they’re diagnosed with cancer, but a lot of people will find that they’re able to, with support and with time, still be able to maintain a certain level of enjoyment of life and ability to do their normal roles. Really, what differentiates that clinical level is when it’s actually impeding their level to do that.
Joe: Yes, absolutely, because, you know, Lisa, one thing that I guess most of us don’t realise is that we need help on a psychological level. You don’t really think about it, it’s cancer and it’s supposed to be hard. It doesn’t occur to people to ask for help. What do you think about that?
Lisa: My response to that is, just because it’s supposed to be hard doesn’t mean that you have to do it alone, or that it can’t be done without help. That classical saying, a problem shared is a problem halved. I think that recognising that this is a hard chapter in your life doesn’t mean that it has to be done on your own, and that it is hard. There are always ways of making things easier and if you think about other areas of life, where people go through traumatic experiences, you would expect to find those hard too, but you would also expect it to be appropriate to go out and get some strategies on board to help make it a little bit easier. Yes, definitely. It’s supposed to be hard, but it doesn’t mean that’s it’s not amendable to change and to make things a little smoother and easier with a bit of support around you.
Joe: Yes, absolutely, Lisa. That makes so much sense. Speaking of strategies to deal with, in terms of self-management and self-help, what can you do yourself as a person who’s going through cancer? Maybe as a patient, as a cancer survivor, what are some of the approaches you can do to get through it in a better way?
Lisa: There are a couple of things, first of all is, don’t be afraid to reach out and use the resources that are actually out there, that are available to you. Some of them are the Cancer Council, all the different Cancer Councils around Australia, they’ve got some great resources on their website. Some of them are on things like managing your emotions, coping with cancer. There are also some print-based resources out there, as well. A lot of these ones with the Cancer Council, you can print out as well. Depending on what sorts of cancer you’ve got, then a lot of those websites, like the National Breast Cancer Foundation or Prostate Cancer Foundation, they might have some resources as well and really useful strategies for getting started.
On top of that, though, from the psychological point of view, from where I’ve come from, a lot of the work I do is actually on self-management, so we’ve ended up developing some web-based resources ourselves to help support people that are now fully available to the cancer group, that will guide you through the most commonly experienced issues and then set you on some support strategies and things that you can do yourself to help you manage. Those are some of the resources that you can use. Just as general advice, I think that if there’s one general rule of thumb I tend to tell people, it’s that people often make the mistake of assuming that when they’re feeling crap, they make that statement.
Once I start feeling better, whether it’s feeling better physically or whether it’s feeling better emotionally, once I feel better, then I’ll start doing more things. I’ll start going out and seeing my friends again, I’ll start going back to the gym, I’ll start doing a little bit of more activity in terms of going to work. They have this wait until I feel better before I start doing more. What we actually know from all of the research out there is that for physical wellbeing, as well as emotional wellbeing, you actually need to address that.
You need to start doing a little bit more, just a little bit more all the time, over time. Not heaps straight away, but you need to do a little bit more in order to feel better. Don’t wait to feel better before you do more, you need to do more in order to feel better.
Joe: That’s a fantastic point, Lisa. I love it. Yes, that makes so much sense. That you really have to start the change and keep going, not wait until a better time. As we know with everything in life, there’s never going to be a perfect time to do anything. There’s never going to be a perfect time to change jobs, there’s never going to be a perfect time to start a family, there’s never going to be a perfect time to get over cancer, you have to start with it now and make changes now.
Lisa: Exactly. Especially for when you’re struggling emotionally, it can be a huge barrier because you think, I’m lousy company, I’m feeling so woeful, I’m just going to drag people down. It can be really hard to get past that and go, I’m going to put myself out there anyway. Like everything, the first time is always the hardest, then it ends up being a little bit like dominos, that once you flick that first domino down and get a little bit of activity happening and do a little bit more, it ends up being a lot easier to then keep building momentum from that and that becomes less scary to do more as you go.
Joe: Cool. Yes, builds momentum, love it. That makes so much sense. In terms of dealing with everyday stress around anxiety, so how do you actually – when you start to make all of these changes – how do you know that you’re making progress? How do you know that you are getting better? How do you know that you’re getting a better grip on managing this side of things?
Lisa: Yes, so coming back to how you asked me earlier about what clinically significant distress looks like. I know it’s such a clinical term, sorry. The two things I said there that indicate things are a problem are also going to be the two things that are an indicator that you might be making improvements. Those are if you feel like you’re able to do those activities without them causing quite so much distress or worry, then that’s one sign that you’re doing a bit more gradually. Then the second is that how distressed you’re feeling while you’re doing more is starting to drop, as well.
It’s those two things, the level of distress, the severity is starting to drop and also the level of activity is going up and your ability to do your normal activities is starting to improve. I think the key for this is that people have the tendency to either compare back to what they used to be like before cancer and that’s their benchmark and they keep striving for that. They think, I’m not there yet, I’m not back to normal, I’m still really struggling, I’m not me again until I get back to this level. Or they focus so far on how far they’ve yet got to go. They’re comparing back to what they used to be, as well as projecting really far forward and how far they’ve got to go.
That they’re not really tracking – okay, compared to one week ago or two weeks ago, what am I doing now that I wasn’t able to do one week or two weeks ago? Really start to celebrate those small wins as you go, rather than thinking on how far you still have yet to go.
Joe: Yes, that’s fantastic, Lisa. It’s all about untangling past, present, and future. If you start comparing yourself to whatever you did before, years ago, or maybe things where you think you should be, just in general, maybe projected into some imaginary future that doesn’t even exist yet. It’s all about dealing with the present, right?
Lisa: Exactly. Can I just catch you there, as well, because that’s something I spend a lot of time dealing with, is the shorts, people are so good at shorting themselves during cancer. Part of it is that the media is really great at putting this image about what a cancer patient and a cancer survivor should look like. People think that unless they actually are that image or are living with cancer in that way, that they’re not coping. They end up putting out this certain image of themselves about how they should be coping up on a pedestal and then it ends up creating even more distress for themselves when they feel like they’re not attaining that goal.
One of the examples that we get a lot of is that the media, the general media, they project this general idea of just be positive, if you’re positive, you’ll beat the cancer, you’ll cope better. Just think positive. Often, when people are feeling crap, physically, excuse my technical language there, but when you’re feeling really unwell physically and emotionally, mentally, everything. To be told that you have to be positive is just yet another short that you’re adding to that mix. It can seem completely unattainable, then you end up with this worry on top of that, gosh, if I’m not thinking positive, I’m going to have worse cancer outcomes. The truth of the matter is, no evidence, there’s no research evidence that has extensively looked at there’s a relationship between thinking positively and survival. It just is not there.
Joe: That’s a great point. I propose a new term, we can call it scientifically crap.
Lisa: That’s right. We’ve coined the clinical terms, significantly crap.
Joe: That’s right, Lisa. You’re exactly right. You don’t’ want to, as a cancer patient or as a survivor, you don’t want to live up to this hyped up images you see on TV of people conquering cancer and living despite all odds and running around with a smile on your face. Sometimes you are just down, and its crap and you don’t know what to do with yourself. What do you think are some practical ways to get things under control? We’re not talking about just positivity, although, being positive helps, but just getting things under control where you feel you’re going to have more in charge of what’s happening and be in charge of your life?
Lisa: Yes, if you’re feeling really down and almost at the point where you’re having trouble getting out of bed in the mornings. I do work with people who are at that level where getting themselves out of bed in the morning is the win. I was saying, celebrate the small win. That’s okay, let’s start setting a regular alarm, put that alarm out of your reach and start your day jumping straight into the shower. It can be that level. You started the day, you’ve got it underway. At that same time, you’ve done that two days in a row, fantastic. It’s about really starting with where you’re at rather than jumping ahead to where you think you should be. There are the should again. Start with where you’re at and work out what’s the next step? What’s the first win? What’s that first domino that you can knock over to get things started? It might also be about linking in with your GP or a member of your medical treatment team wherever you’re receiving your cancer treatment from, and really linking into them and saying, if I’m really struggling, there is a well for anti-depressants as well.
Don’t be afraid of actually getting all the resources on board because we’ll often tend to say when you’re really struggling with distress and depression, it’s like being at the bottom of a well. If you imagine you’re at the bottom of the well and there’s a ladder on the side of that well but it’s out of reach, the role of the anti-depressants is to put you on the ladder. It gives you that first step. Then from there on in, it’s your own efforts that gets you out of the well. It doesn’t mean you have to be on them forever. At the same time, there’s definitely a role for anti-depressants for people who are really struggling even getting those first early wins on the board.
Joe: Yes, so anti-depressants can really help someone to make that step forward, is that right? You can stop that when the right time comes?
Lisa: Yes, I guess one way of thinking about it is that for some people, even they don’t have the capacity when they’re feeling so low to even focus on concentrate on work. It’s so overwhelming to even think, what’s one thing I can do for myself. Whereas, once you can get those anti-depressants on board, it might just create a little bit more of a foundation to start building on. That’s the role of them, they’re not happy pills, they don’t magically fix everything, but they just create a little more stability so that you can build upon it and work and put the hard work in yourself to then be able to create a good, stable framework for keeping yourself well, ongoing.
Joe: That’s good to know, Lisa. The other thing I wanted to talk to you was, the fact that cancer can be a real test for friendships, for relationships. From the perspective of someone who had cancer, you don’t want to look weak but at the same time, like you mentioned, you don’t want to also put pressure on people talking about your problems all the time. Also, if your friend or a partner, you also don’t want to say the wrong thing or do the wrong thing. It’s confusing. What sort of advice do you have on that front?
Lisa: Yes. I hear that a lot, there’s a common statement that I tend to hear about. That when people are going through cancer treatment, that they find out who their true friends are. That can pad out the deadwood or the driftwood and that they’re really surprised that some people who may not have been close friends before they were diagnosed with cancer, they really step into the foreground. While other people they would assume would be their key support people are the ones who end up stepping into the background and fading away. They may not even hear from them again.
That can be incredibly hurtful, understandably. The thing I would say, it’s really hard when you’re going through this and you have a level – you need your support group around you. It’s where possible, be kind and I think what people have to recognise is that cancer activates all sorts of release and fears for everyone. It really does raise awareness of mortality, not just in the person going through the cancer but for everyone. When you hear that, you never know what someone else’s back story is. Even friends you know really well, maybe they lost someone to cancer and never actually disclosed.
Hearing that your diagnosis has brought all of that back up and re-triggered them. You don’t actually know what someone is going through themselves. There might be a reason why they haven’t been able, legitimately able to be there for you. Even for those who don’t have that backstory, cancer is scary. It is scary. As you said, they may not know how to say the right thing. The more time that passes before they’ve actually come and said something to you, the harder it is to then go on. Gosh, it’s been one month, and I should have been in contact by now. It’s been two months now, my goodness, I’m being a terrible friend. That ends up becoming the barrier, that they haven’t actually been in contact becomes more and more challenging for them.
In terms of how to overcome it. Two things. One is, where possible, try not to, even though it’s hurtful, try not to personalise and think it’s about you. It’s actually about what’s going on for that other person. That’s why they haven’t reached out. The second thing is, I think it’s about if you are the support person and you want to know what’s a useful starting point and you don’t know what to say, that’s actually the starting point in saying, I’m so sorry that you’re going through this, I want to be there for you but I’m finding this really hard. I don’t know what to say and I’m worried I’m going to say the wrong thing.
Then you might use that as the starting point, what are things that could be helpful for you, as the person going through cancer, what do you need? What can I do to support you? Instead of fear of you’re going to say the wrong thing, use that as your platform. Use that as your opening statement. I wish I knew what I could say right now, I wish I knew what I could do. Can you help me? What would you like from me as we go through this together?
Joe: That’s exactly right, Lisa, because that’s you’re being proactive and you’re taking the first step and you’re saying, it’s okay to say whatever.
Lisa: Yes, that’s right. I think most people would say that, they would far rather someone say, not quite the right thing but even the wrong thing, but they’re actually there and present, than someone’s fear of saying the wrong thing, making completely absent from your life, while you’re going through a traumatic time.
Joe: Yes, I completely agree with you. Also, on a similar subject, when it comes to caregivers and the partners or parents or children of someone with cancer, because they often have to deal with a lot, they have to sometimes not only support the person who’s going through cancer, but they have to go on with their daily life. If it’s stressful for them, what can you do as a caregiver to help the person who’s going through cancer or building a life after cancer, of maybe even helping yourself?
Lisa: Yes, I think that’s a really important point because we actually know from the research that caregivers and loved ones have the same level, if not higher levels of distress as the person that’s going through cancer.
Lisa: Yes. They don’t have nearly the same level of support around them because the focus is on the person with cancer. It is actually about recognising and saying it’s okay for me to be struggling right now. When I worked with people with cancer, I’m always saying, cancer is actually a family illness, it might be one person that’s got the cancer in their body but it’s affecting everyone in that household. It’s affecting everyone under the roof. Just because you don’t carry the cancer in your body, doesn’t mean that it’s not affecting your in just as many ways as the person who’s going through it.
It’s about really trying to normalise and validate that. It’s actually a struggle for everything, whether it’s children, whether it’s young children, adult children, as well as partners. Whoever is in that caregiving role, and often it’s spread across everyone in that family unit, they will actually need some resources to help them through. If you are a caregiver, don’t be afraid. A lot of the time, if there’s a psychologist or a mental health clinician attached to wherever your loved one is receiving their treatment, they will generally make those same services available to the loved ones as well. It’s not just necessarily for the person with cancer. Also, there are groups like, look up the website, Carers Australia, they often have resources and strategies as well listed there. That’s a good starting point, too.
Joe: Cool, thank you, Lisa. Speaking of resources and strategies, you know that I love finding my way because it’s such a great tool. I first talked about it from Bogdan and it really sounds like it’s been a lot of years in the making. It sounds like your life’s work. I think it started as a self-help manual, is that right?
Lisa: That’s right. This now is a 13-year journey for me.
Lisa: As you say, it has been my life’s work. I started in this area as a new PhD student and I was really aware that while we’ve been talking about accessing supports, for a lot of people, there are legitimate reasons why they can’t access face-to-face support, whether that’s with a psychologist, a psychiatrist, a social worker, any mental health clinician. There are many people where geography in Australia gets in the way. There’s not always a handy psychologist that knows about cancer around the corner. Yes, for people who live rurally or remotely, that’s a really challenge for that group of people.
It’s also as much as they’re trying to make headway with this, there is still a stigma associated with going and seeing a mental health clinician. That can be another thing. There are a lot of people out there, who even if they’re not concerned about stigma or geography, they just have a personal preference. They would rather deal with this on their own, in their own time, in their own space. When they’re ready and do it through their time that way. They’re not really interested in seeing a psychologist for it. There’s a whole heap of reasons why we ended up going down this road.
They don’t want to access traditional services, but at the same time, they’re still struggling, and we know that their medical outcomes, as well as their psychological outcomes will be worse if they don’t tackle. That’s something I don’t think I make clear earlier why people ought to do this, that outcomes like medical as well as psychological are worse if you don’t get in and treat that distress. We need to come up with a new way, a new avenue of trying to help people and get these same tools that we’ve been providing with them, working with them face-to-face, we need to get these tools onboard in a different way. Here we started with my PhD doing that in a self-help book. Just with women with early-stage breast cancer to start with, we found that was really effective in helping reduce the stress and improving coping and quality of life. We then from there with ongoing research adapted it into an online program for all types of early stage cancer, so that’s cancer being treated.
Now, we’re at the point where we know that’s been really helpful and that’s the one that’s now freely available that anyone can access. Now, we’re at the point of trying to adapt that for women with advance or incurable breast cancer, with the aim, longer term, again, of sending it out to other types of cancer, as well, of advanced cancer.
Joe: Yes, fantastic, Lisa. Love it. I guess where I’ve seen the commonality here is that a lot of the challenges that people go through are universal whatever the type of cancer, is that right?
Lisa: That’s exactly right. Yes, we often think that the findings in a lot of research and one of the criticisms you’ll find is you’ll often start with breast cancer, to try things for the first time because women with breast cancer are pretty good a reaching out and making use of resources when they’re made available. There’s also a lot of them. It’s the most common cancer that occurs for females. We’ll tend to often trials things for the first time and see if it works there, then hopefully we might be able to extend that out and make it work for other types of cancer, people with other types of cancer.
Yes, you’re exactly right, we have found that it doesn’t matter what type of cancer you have, that some of those, especially in terms of the psychological and emotional issues, it can. There are enough commonalities across and universal experiences across the different types of cancer, that it’s better to create a platform for everyone. Then you can add additional resources to make them cancer specific, depending on what your unique cancer type is and some of the more particular needs that arise there.
Joe: Fantastic, Lisa. How does Finding My Way, how does it work?
Lisa: Yes, so Finding My Way, it’s a six-week program. As I said, it covers the most commonly experienced issues. We developed this in consultation with people with cancer so that we knew up front what the issues were, as you probably guessed, I’ve worked with people with cancer for a long time, too, so you’re bringing in that kind of knowledge, as well. The six modules to start with. It’s on one of the issues that come up straight after diagnosis and communication with members of your medical team and making decisions about your treatment. That’s the initial, you’ve just be diagnosed, how do we navigate this? That’s the first module. Then modules two, three, four, and five are all the most common issues that happen while you’re going through your medical treatment.
Those are things like managing your physical symptoms, things like pain, nausea, fatigue, even though they are physical symptoms, we know there’s a really strong relationships between how you’re going emotionally and exacerbating those physical symptoms. Some of the times, those strategies you use, there’s a good solid evidence base for reducing pain symptoms, purely through using some psychological strategies for example. That’s where we come in with that second module.
Then the third module is on managing emotional distress. That’s some of the issues we talked about earlier, about anger and anxiety and depression and fear and worry. It’s been told the strategies on managing those. Then the fourth module on managing things like body image concerns and changes to the way you see yourself, with your identity. Even though people might have always grumbled about having to do the school drop-offs and being the taxi driver to their kids, when they’re going through treatment, they might actually suddenly feel upset that they’re no longer able to do those roles because of feeling so fatigued and whatnot.
We provide strategies for managing those sorts of issues. Then the fifth module is really on managing those changes to the social support network we were talking about and the impact on partner and the impact on children, as well. Those topics that we mentioned earlier. Then the six and final module is what to expect as you transition out of the treatment and into what we call the survivorship period. What are some of the unique challenges that might happen in that stage? Things like managing the fear that the cancer might come back, that’s a really commonly raised one that we hear about and tools to help people manage that as they go through.
Joe: Fantastic. What’s your favourite technique or strategy out of Finding My Way?
Lisa: That’s like asking me to choose what’s my favourite child. They’re all important.
Joe: There’s always one you love the most.
Lisa: No, there’s not. You’re not catching me out. I think it really speaks importance that to get through cancer treatment, you really need to tackle all of these things. It’s a bit like a stool. Imagine a three-legged stool. As soon as one of them is actually starting to get a bit wonky, the whole stool become unstable. You do need to be trying to look after your emotional, your physical, your social wellbeing altogether while you’re going through treatment. You will get better medical outcomes because of it. We know that people stick to their treatment better, they stick to it and attend to all of their appointments like they’re meant to. They have less severe side-effects when they’re going through it, if they can actually get some of these strategies on board.
Joe: Cool. I’m still going to put you on the spot and try to choose one.
Lisa: The one module out of all of them?
Lisa: I think there are two. Can I narrow it down to two?
Joe: Perfect, let’s do it.
Lisa: Out of the two, I would say if you could get the second module on manging your physical symptoms and strategies on board to help to reduce the severity of those and then the module three on managing the emotional distress. I think if you had to start with two, those would be the two critical ones to start with. Then the rest will support and build on that.
Joe: Okay, perfect. Lisa, if someone wanted to find Finding My Way, what would you do?
Lisa: Yes, you just have to go to the website, and that’s: Findingmyway.org.au. Finding My Way is all one word.org.au. You can also find from the Cancer Council an essay on their website. There’s a link to it. I think the most direct way is just to go straight to: Findingmyway.org.au.
Joe: What a fantastic resource. Thank you so much for your time, Lisa.
Lisa: Thank you. That was great.