It’s tough to open up and talk about your worries during cancer, even with people you trust the most. That’s where someone who is outside of your immediate circle can help – they don’t know you and there is no agenda. To shed some light on why a qualified psychologist can become your greatest ally in dealing with worries and uncertainty that come with cancer, I’m talking to Maria who heads up Clinical Psychology department at the Peter MacCallum Cancer Center in Melbourne. Maria has a really unique way of relating to people and she shares how you can find the right psychologist for you! Here is what we cover in this conversation:
Internal barriers that prevent us from asking for help
Why cancer is more than a physical illness
What to expect from a qualified psychologist
How to screening your therapist
The impact cancer has on you and those you love
Mindfulness during cancer: is it worth it?
and much, much more!
Joe: Maria, one of the things that really hits someone over the head is a cancer diagnosis, it’s a huge shock when it happens. How do you make sense of it all, how do you come to grips with it?
Maria: Yes, I think once someone is diagnosed with cancer, as you said, it is a big shock and people go through a range of emotions. They feel anxious, they feel worried, they feel overwhelmed about the cancer itself and what lays ahead with treatment. I don’t think there is one path forward or one simple solution. People adjust in their own time and pace. Some things that are usually helpful is talking about how one feels, expressing it with family and friends and other peers.
For some people, getting information and getting the right information from reliable sources is very helpful. They feel empowered and know what to expect. For some people, having too much information is very overwhelming as well. For other people, it’s about finding the right team that they trust and want to work with and they feel can help them with their journey. Other things that are important is making sure that throughout this experience that you maintain things like looking after yourself, catching up with the people that you love and care about.
Trying to include, as the hospital take over your diary, making sure that you have some things that you really value in it and continue with your leisure. Exercise, you hear people talking a lot about exercise through all of this, but if you’re able to be fit enough, it’s really encouraged. It helps people relax, it helps clear the mind, it’s good for the body. Those are some of the tips that may help.
Joe: Yes, absolutely. In terms of how you end up seeing people, I think one of the challenges that people have, I know that I had, with cancer, you often don’t realise that you need help, psychological help. You know it’s supposed to be tough, you’re going through a treatment, you’re facing all of these issues, you’re thinking about your own mortality, you’re thinking about what’s going to happen, all this unknown. I think a lot of folks that I speak to, and myself included, they don’t really realise that they need help. How would you say that someone should go about this and to say, “Well, I should really talk to someone, to a professional?”
Maria: I think asking for help is really difficult. I think that people often see cancer as a physical illness. Really, it is both, it’s a physical illness and emotional. It impacts on you emotionally. Irrespective of prognosis. It changes people’s lives. People are often afraid to ask for help for some of the reasons that you said, they’ll be often embarrassed to ask for help because they feel like they should be coping, they feel that they should be resilient, they feel that there’s a stigma attached to speaking to someone. They feel that they don’t want to burden their healthcare professionals. They feel that they’ve been given treatments to save their lives, and they feel that this is secondary.
Ideally, what I would like to see, and we’ve come a long way, is that the emotional impacts of cancer are seen as part of routine care, and people are offered supports, and that people can feel that they can ask for help, or that they’re actually offered. You’re going to go and have surgery now but also, we would like you to speak to the psychologist or the social worker to talk about how this is impacting on you and your family.
I think it’s also really difficult to know when to ask for help. Yes, she said cancer impacts on your emotionally, but sometimes when you’re not sleeping, when you’re overthinking things, when you often can’t see any hope for the future and stuff like that, that’s probably when it’s really hard and you probably should have sought help earlier.
It’s people, friends and family, will let you know that perhaps you’re not your usual self at the moment. To check in with friends and family. They might be the first phone call. To know that it’s okay to ask for help and that it’s a normal part of care.
Joe: Yes, that’s a great point, so that people who love you, they’re the judge to know that you’re not coping as well as you’d like. Tell me, Maria, how does it look like? I think if somebody is wondering what does professional help look like? What would be some of the things that you’d talk about? How would someone make sure that they don’t feel awkward or overwhelmed when they see someone like yourself?
Maria: Yes, it’s important to know that seeing a psychologist or a psychiatrist, the first sessions are often very difficult. Change doesn’t happen also immediately. It’s very personal because the psychologist will ask you questions about your cancer and how you’re going and its treatment, and they’ll ask you to talk about your fears. They’ll ask you to talk about the side-effects of the treatment and how they’ve impacted on you and your body. They’ll ask you to talk about fears of progression or recurrence, or fears of scans. They’ll also ask you some personal questions about your life, to get to know you and your family and any other traumas that may have happened previously.
They’re really trying to get to know you, and they’ll talk about your own coping styles and your resilience. One of the main things that’s really important in the therapeutic process is that the person is made to feel comfortable and not judge, that you’ve got a rapport with the psychologist, and the therapist. I think that’s probably one of the key ingredients. People feel once they’ve come in that their therapist is genuine, and they’ve got a good rapport and that they can trust them. They’re probably going to have a more successful relationship and get their needs met. It might take a couple of goes to find the right therapist, as well.
Joe: That’s such a great point, Maria, because I think with a lot of many things, even when you’re seeing a general practitioner, or even a plumber, you need to find the right person for yourself. I think most of us, I think especially if you’re going through a medical system, you often feel like I can’t ask a second opinion, or I can’t go to see someone else. Sometimes the person just may not be the right match for you.
Maria: Yes, exactly. I think it is important to almost screen your therapist before you go and see them. You might want to ask them questions like, what is your experience with working with people with cancer? What kind of therapeutic techniques do you use? You might want to have these conversations before you’ve gone in and seen them. Once you’ve given it a go, you might ask yourself, can I trust this person? Do I feel comfortable in talking about what’s really bothering me?
Do I feel that they’re genuine with me? Then you can establish whether they’re the right person for you. Psychology is hard, and therapy is hard. It’s not an instant result because you’ve got to process things that are really difficult. It’s important to give it a go, but if you feel that it’s not the right person for you, or you’re feeling you’re being dismissed or not heard, see someone else.
Joe: Yes, that’s actually a fantastic point, Maria, because I think a patient or a cancer survivor, giving them the feeling that they’re in control is very important because with cancer, you’re just going to feel so out of control with a lot of stuff. There’s treatment, there are all these appointments and tests, you don’t really know what’s going on. The other thing that I think comes up for people is, how do you open up and ask difficult or awkward questions? There’s a lot of impact on normal life when you go through treatment or after treatment, as well. These things that affect whether people will be able to go back to work, or whether they’ll be able to have sex, or whether they’ll be able to do all sorts of things. What is your advice on that front?
Maria: Like, how to go about asking these questions?
Maria: I think a good therapist will ask those questions. You don’t have to ask those questions, but a good therapist will give you the opportunity to talk about the impact of cancer on your relationships, the impact on your sex life, the impact and how you feel about your body going from a healthy body to perhaps not being so healthy now, or perhaps not being so independent. Some of these difficult questions you won’t have to answer them if you don’t want to, but a good therapist will provide you with the opportunity to investigate and explore those issues.
They will provide you with an opportunity to even think about them differently. I feel sometimes there’s a lot of pressure on people with cancer to feel that they have to know everything and have to ask for everything, as well. Whereas, I think we can guide that conversation a little better and help people explore it.
Joe: Yes, absolutely. What sort of approach do you use? I know you must tailor it to people, as well, but what sort of approaches do you typically consider when you’re working with someone with cancer?
Maria: Yes. A lot of the work we do, we do a lot of counselling and getting people to tell their narrative and tell their experience. People are experts of their experience. Making sure people get a chance to explore it and tell their story. We use a lot of evidence-based techniques. We use cognitive behaviour therapy which looks at the way you think and feel and changing behaviours and thoughts that perhaps may or may not be making you feel as good as you’d like to feel. We use narrative therapy, we use acceptance and commitment therapies, we use a little bit of mindfulness. Some people with perhaps more advanced disease, we use more existential psychotherapies, as well.
Joe: Cool. You know, Maria, cancer is, I’m sure you come across it a lot, like cancer impacts a lot on relationships, on friendships, that can be tough for people and sometimes people around you don’t really know what to say or do because they don’t want to offend you or say the wrong thing. What advice do you have for people on that front, on how to talk about cancer with their friends, with their family, with their co-workers? How to ask for help or get supported in the way that you want to be supported?
Maria: Yes, cancer impacts on the person and it impacts on their networks of friends and family. I think a lot of it is because families and friends sometimes don’t know what to say and do and they’re also feeling the emotional impact, the stress, the sadness, the grief of watching a loved one going through cancer. They perhaps don’t know, as you’ve said, what the right questions are or what the right things to say and do is. What they tend to do sometimes is to avoid it altogether.
Joe: Which is the worst thing you can do.
Maria: Not talk about what’s going on. Some relationships grow a lot strong through this, but it’s important to have open communication. Acknowledge the changes in the relationships, acknowledge the reversals of roles, acknowledge that someone is perhaps unable to do as much as they have been able to do, and the partner is doing a lot more. Acknowledge the changes in intimacy. Be able to grieve some of these changes. It’s important, some friends also want to provide lots of support, but they just don’t know how to. It’s important to direct people in the kind of support that you want.
For example, many people might bring meals, but what you’d really like is for someone to mow the lawn. It’s important to perhaps come up with a list of what would be supportive and what isn’t supportive, and delegate tasks to people to help you through. Some people won’t be able to support you in the way that you want to. That can often be quite disappointing and sad. It’s sometimes really important for the person to focus on the support that’s there and work on those relationships that make you feel better. Some relationships might come to an end as well through this.
Joe: Yes, absolutely. I think that it’s such a great thing to acknowledge, that it’s okay that relationships can change, as well. Sometimes you feel that it’s a little bit too much and that it’s not happening the way you want it to, that’s just part of life. Just maybe cancer accelerates certain things, or maybe shows up things that maybe were there before but were beneath the surface, if that makes sense. Maria, you also touched on the partners of people with cancer and changing roles.
There’s often a lot of pressure on the partner, as well, because not only are they supporting someone through cancer, but they have to go on with their normal life and do the things that they always do. Do you think that there’s a lot of pressure on the partners, as well?
Maria: There is a lot of pressure on the partners. What we have found, and we’re getting to understand more of, the partners, their distress often parallels the patient’s distress to it because they have all of these additional roles. Sometimes busy hospitals focus on the patient, we don’t focus as much on the partner and offering them support. Partners do go on and they do maintain households. They look after the children, they work, and they want to be a loving and caring, supportive partner, as well.
What I do encourage partners to often do is to make sure that through this, that they find time for themselves. That it’s okay for them to go out with some girlfriends or their male friends and do something with their peers. It’s okay to take a break from this, as well. As you know, treatments take a while, as well, it’s important to invest in one’s self to make sure that they don’t burnout and that they’re there.
Joe: Yes, that makes so much sense, Maria. I know you touched on mindfulness before. What’s your take on mindfulness?
Maria: Mindfulness we’ve seen a lot, it’s become quite popular a lot in the past two decades in particular. I think there are mixed results in the answer setting, mindfulness has been very popular in treating depression and anxiety and in clinical populations. We’ve seen some fantastic work that’s happened with Linda Carson’s group in breast cancer, in, again, helping with anxiety and depression. There are mixed results, perhaps with people with prostate cancer and the studies there. My take, for some people it can be really helpful.
For some of my patients, don’t give me all that meditation, all that mindfulness, stay away from it. You work with the person and what they’re more likely to take up. There are some really good mindfulness resources, such as if people want to have a try, the headspace app. Which teaches people do to ten minutes of mindfulness for ten days, they can get a trial of it and see if it works for them. There’s the smiling mind app, as well, which is an evidence-based app. I think it’s just be really mindful of who we give mindfulness to.
Joe: That’s a great point and these are great resources. I think that would be really good for folks to investigate because we hear so much about mindfulness, but no one really knows what that is or how it works.
Maria: Mindfulness was first introduced by Jon Kabat-Zinn, into the health settings. He developed a mindfulness intervention called: Mindfulness-based stress reduction. Which teaches you basically to pay attention on purpose to the current moment and being unjudgmental about that moment. It really teaches you to be focused about what’s going on in your mind right now, and to be aware of that. They use a range of techniques.
Jon Kabat-Zinn’s work was based in hospitals where people felt that the medical treatments were not improving and then they had to learn to accept some of these illnesses. Then he developed this technique and it has been effective for things like pain, as well. The jury is still out about its full effects in cancer.
Joe: Yes, Maria, you’re making me think about the challenges associated with creating psychosocial treatments or interventions. That’s probably what you would call them. From the perspective of different people’s needs, how people of different age, sex, different preference, some of them might respond to certain things and some of them will respond to completely different things. I guess that’s an individualised approach, right? That you would tailor it specific to the person?
Maria: Yes, absolutely. You’d tailor things to people’s individual needs and individual personalities. It’s also, what I find in the work that I do, that people already have a whole bunch of coping strategies that they’ve already used, that have worked in the past. Cancer has come along, and people feel overwhelmed and sometimes it’s about finding those coping strategies that these people have already used to deal with other things and bringing them back into the now.
Joe: That’s fantastic, that’s such a great point. You’re helping people discover things that they already know that worked for them.
Maria: Exactly. When we get really stressed, we give up on things that are usually good for us. Sometimes when people are really, really stressed, they might give up on exercise, they might give up catching up with their friends and family or doing something really good for themselves or learning something new. You just help people to get back on track. When was the last time you caught up with a friend and didn’t talk about cancer?
When was the last time you had some fun during this time? It’s about reintroducing some of the things that they may have stopped doing. If they had played an instrument, they may have totally stopped playing it, but the instrument gave them a lot of pleasure. We’re trying to reintroduce some of those activities that give them value and meaning.
Joe: Yes, that’s fantastic, Maria. Also, I think it’s a very powerful to talk to a psychologist or a counsellor, someone who is actually removed from your life, someone who is not a part of your family or a friend, of whom you have history and you have this certain image. I think it would be incredibly helpful to talk to someone like yourself, where you don’t have any agenda or something like that, you can just talk to them and find an approach. It’s almost like a stranger on a train, does that make sense?
Maria: Yes, it does make sense. I’ve never been called a stranger on a train as a therapist.
Joe: You can say anything, you know?
Maria: Yes, that’s why I feel people come to us, they feel like they can say things and just say it how it is for them without filtering it out or worrying about the impact that it’s going to have on their families and their friends. That’s why rapport is so important, that we need to make sure that you’re comfortable with it, because that’s the ultimate aim so that you can say things that are on your mind and not fear that you’re going to be judged or burden the therapist or anything like that. The therapist has some skills that can help you work through it and guide you along the way to work out and process the issues that are going on for you.
Joe: Yes, absolutely. Maria, many of us have problems with sleep after treatment, what are some of the steps that you can follow to have better sleep?
Maria: Yes, sleep is a very common problem for people with cancer. My team, in collaboration with the Royal Melbourne and the Royal Women’s Hospital, we developed a step care program called: Can Sleep for people with cancer. About 60 percent of people with cancer have sleep difficulties. That could be during treatment or post treatment. The first step is to try and work out what’s causing the sleep difficulty. Is it that you’re worried about your cancer or is it some of the side-effects of cancer, or is there some other medical thing that’s causing the sleep problem? Such as sleep apnoea.
You do need, initially, before you go into self-management, try to work out what that is. If it is more of an insomnia, there are lots of things that you can do. One of them is really trying to get – people have heard about the sleep hygiene technique, so using your bed for sleep alone, not having caffeine too late at night, if you’re in bed for more than 20/30 minutes tossing and turning to get out of bed and go into another room and do a quiet activity. When you get up in the morning, one of the really important things to do is to go outside and have some natural light. That kickstarts your body clock again. Exercising in the morning is also very helpful.
Joe: Maria, as something that comes up a lot for anyone who’s been through cancer is the fear of cancer coming back. What would you recommend in terms of dealing with it? Trying to keep yourself away from this fear and anxiety about it, and trying to focus on your normal day-to-day life?
Maria: You’re absolutely right, many of people with cancer fear that, it’s one of the most common concerns, that fear of the cancer will return of progress to another part of the body. It’s a normal response to having a cancer diagnosis. For some people, this fear of cancer recurrence can be very debilitating, they’re constantly waiting for the other shoe to drop, they feel like they’ve got a shadow following them. They’re constantly waiting for something bad to happen. It can really interfere with their quality of life and their ability to make plans for the future. It can interfere with their relationships somewhere.
This fear can often be quite debilitating because people may stop coming to appointments because they’re fearful of what the doctors might say, so they might avoid the medical professional, they might seek increased scans, which exacerbates their anxiety as well. The fear of cancer recurrence has also been strongly associated with depression and anxiety, and a poorer quality of life. What I recommend is knowing your triggers, knowing that perhaps before a scan, you’re going to feel it more. Before an anniversary, you’re going to feel it more. If you notice a different ache and pain in your body, you’re going to feel it more. Know your triggers.
Then have appropriate medical information. How often? What is likely knowing your risks? What is the likelihood? When is it appropriate that you seek help? How often do you need to be checking in getting screenings? Getting the right information from your medical team. Having the right supports in place also, talking to your medical team, your friends and your family about these fears, but also talking to your peers. I think there are some really good peer support groups, that people could share some of these.
Once you’ve spoken and you’ve heard, people can kind of go, okay, it’s okay, it’s just a fear, it’s not actually happening at the moment. That can be very helpful in making sure that you continue to do your self-care. Things like we just spoke a bit about earlier, doing things that you enjoy, eating well, exercising, trying to get a good night’s sleep are essential to looking after your body and making your body feel better, and doing things that help manage the worry. I think we spoke a bit earlier about worry time. There are things like relaxation that you can also do, progressive muscle relaxation too, to calm the body and the mind. Those are some of the strategies that could be helpful.
Joe: Yes, fantastic. Thank you so much, Maria, for your time.
Maria: Thank you.