Cancer Affects the Carer Too
The thing about cancer is that it affects the carer too.
A cancer diagnosis not only changes the life of the person with the cancer, but also the lives of those close to them.
If you are caring for someone with cancer, you might find that you are so focused on supporting them that you forget your own needs or don’t really acknowledge the impact it is having on you.
In this episode of The Thing About Cancer, Julie and health psychologist Dr Ben Britton look at the experience of caring for someone with cancer.
Carers can sometimes feel sidelined, even though, just like the person with cancer, their lives are often upended after a cancer diagnosis. And just like the person with cancer, carers need strong support systems to help them strike a balance between their caring duties and the rest of their life.
Who is a carer?
In this podcast, Ben talks about what defines a carer, and whether carers actually see themselves as carers or as someone who’s simply lending a hand.
Carers’ responsibilities can be many and varied, and can include:
- coordinating medical care, such as managing medicines, helping control pain, monitoring side effects, and physical care of the patient
- providing practical support, such as preparing food, accompanying the person to treatment, managing finances and making legal arrangements
- offering emotional support
- communicating with family and friends.
Carers often have high levels of stress
Research shows that levels of distress can sometimes be higher in the carers of cancer patients than in the cancer patients themselves. That might surprise some people.
In this episode, we explore what makes the experience of caring for someone with cancer so difficult. Ben explains that the carer often feels a huge sense of responsibility, and they typically put the person with cancer first, ignoring their own needs.
It’s easy for the carer to feel isolated and lonely. With all their caring duties, they can slip off the social radar, and lose touch with friends.
Caring itself is exhausting and demanding. Add to this work, financial strain and possibly needing to look after other family members, and you can see how the stress can build.
How do carers react to this stress?
Carers can react in different ways to stress.
Ben talks about carer burnout, explaining that stress can manifest itself physically, with trouble sleeping, headaches, or changes in appetite. Carers can also be affected emotionally, feeling tired, irritable, angry – or they may experience depression, guilt or fear.
So what can a carer do to cope?
We learn the different things that may help you cope with the stress that often comes with caring. Set boundaries and priorities, be kind to yourself and don’t expect perfection – and take time out for yourself: socialise, do sport, or something creative. Having that ‘me-time’ will help you focus on yourself, and recharge your batteries.
One of the common things that people do is completely withdraw from their social circles and just become a patient and a carer and not anything else. What you’re always aiming for is to be a whole person, so you’re a carer and a tennis player and a librarian – be as whole as you can be.
— Ben Britton, psychologist
In this episode you’ll also find out about the support services you can call on to bolster your own caregiving – and don’t forget to reach out to the people around you, friends and family, as they may just be waiting for a cue to step up and lend a hand.
If you are caring for your partner, how might this affect your relationship?
Going from being partners to being a carer and patient often changes the traditional roles you play in your relationship.
Rather than working as a team, you may shift to a much more one-sided dynamic. Often this is a result of the carer not wanting to put any extra burden on their partner, who is already dealing with their cancer diagnosis. But it’s still a relationship, and you need to support each other through what might be the hardest thing that either of you will ever do.
While it’s not always the case, many people do find that the experience of cancer deepens their relationship.
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
- Caring for someone with cancer – learn more about the role of a carer, as well as the support networks that can assist you in your caring duties
- Support for carers – links to Cancer Council’s in-person, phone or online support, as well as services such as our Transport to Treatment, Home Help, and Legal and Financial Referral Service
- 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
- Easy-to-read information about cancer – cancer types, treatments and issues
- Podcast: Caring for Someone with Advanced Cancer – Dr Toni Lindsay talks about managing the challenges of being a carer for someone with advanced cancer
From other organisations
- Carers Australia – national body representing Australia’s carers
- Carers NSW – provide information and services to carers in NSW
- Carer Life Course – identifies six phases of caring and provides information, support and resources
- Working Carers Gateway – information for people in NSW who are juggling caring and working, and information for their employers
- Young Carers NSW – a Carers NSW program for carers aged 25 and under
Transcript of Episode 10: Cancer Affects the Carer Too
The Thing About Cancer podcast, Cancer Council NSW
[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 not only changes the life of the person with the cancer, but also the lives of those close to them. And that’s especially the case for the carer.
Ben Britton: You can’t always put someone else’s needs above yours because eventually you won’t be able to care for them. If you’re not taking care of yourself, these things that are the sort of bare minimum just to keep you ticking over have to become one of the jobs of being a carer. So a little bit of self-care is part of being a carer.
Julie: We’re talking to Ben Britton, a clinical and health psychologist from Calvary Mater Hospital in Newcastle, NSW. Ben has worked with many people with cancer as well as their carers and families.
Just to be clear, this podcast contains general information only so we recommend you talk to appropriate professionals about your individual situation. You can also call Cancer Council 13 11 20 if you have any questions.
We’ll go back to Ben in a moment but first, let’s hear from Georgie about her experience as a carer during her husband’s cancer treatment.
Georgie: You’re operating on a level that’s sooo different from what normal people are seeing, or like… they think like “Oh, how is she … she looks like she’s really coping well?” But you’re just … it’s this veneer of coping that I find. And you have to put on a veneer for outside but you’ve also got to do that for inside, because you’ve got to keep them strong. And it’s really tough! You watch your partner struggle and they get frustrated, they get angry, and the only person they’re probably going to take it out on is you because you’re the closest person. And you think, [angrily] “Mmm, it’s not really me, I didn’t do this…” We’re doing this journey together, and you understand that. Or when he was going through radiotherapy and he was sooo tired – I was so tired because we’d just had a baby and I’m exhausted – but you just had to keep going and just keep ploughing on.
Julie: At the start of this episode, you heard psychologist Ben Britton talking about the importance of self-care for carers. That self-care is in fact one of the jobs of being a carer, and Ben’s going to tell us more about that. Thanks for joining us, Ben! Before we talk more about self-care, can you tell me what is a carer?
Ben: So, I probably think about it in two ways. I mean there’s an official definition, which is something along the lines of someone who has unpaid and ongoing care of a sick person, and in this case a cancer patient. In a psychological sense, so in psycho-oncology which is the area I work in, we would say – it’s just someone who cares about someone who’s ill. So you can have multiple carers for each individual patient.
Julie: And would you agree that it can almost be a slow transition – for whether it be partner or children or close family or even friends – a slow transition to perceive themselves as a carer? It’s an identity that emerges…
Ben: Most definitely, most definitely. It’s, um, very hard to put a point on when someone has become a carer, when they are or they’re not. But the idea of carer is… while it can be a slow transition in role, it can be a fast transition in terms of need. So, some days someone might be a carer, the next day they might not.
Julie: So what are the classic things that people often have to do for someone who’s had a cancer diagnosis?
Ben: Right, so I mean there’s very obvious things like, as I said, you know, pulling a wheelchair out of a car or dropping them at their radiotherapy every day, or helping them when they’re nauseous… those sort of things. Cooking, sometimes cleaning – those sort of things. But from that moment you talk about, where someone’s diagnosed, just being there and being the one that holds their hand or, you know, saying, “Look, do you want me to ring other people and let them know?” That’s a carer role as well.
Julie: And it may involve learning about the cancer condition in order to assist someone to ask good questions of their multidisciplinary team.
Ben: Yeah, most definitely. So one of the things we know is that having another person in the room while the patient sees their doctor reduces distress fairly significantly. So that might be that particular carer’s role – all they are is the doctor visits carer, but that is a really essential role and, you know, the patient is more likely to remember stuff, you know, and they’re less distressed.
Julie: You mentioned distress a couple of times there and as I understand it there’s some research that indicates that people in the caring roles can be more distressed at times than the person that’s had the diagnosis. Can you explain if that’s so and why?
Ben: In the work we’ve done in our hospital with, you know, tens of thousands of people screened for psychological distress – carers had higher rates on average than patients. Why is a little bit contentious… I have a theory which is along the lines of: it’s not sort of considered acceptable to the carer for them to be upset. You know, it’s “This is not about me, this is about this loved one who’s sick.” You know, and “How could I possibly think about or tell people how difficult this is for me because they’ve got something very wrong with them.” So it’s a sense of not wanting to seem sort of selfish when someone else is so ill, and so as a result they’re less likely to take up services. So we know that they don’t engage with services as much as carers. Umm, we know that they’re very unlikely to self-refer to support services such as social work or coming in and seeing psycho-oncology. There are carer support groups but they’re nowhere near as attended as cancer support groups and that may be because, you know, that thing of “I don’t want to make myself feel more important than the person who’s actually sick.” Or it could be that they just can’t get out of the house because they’re caring for someone who’s really sick.
Julie: And there are so many potential and unfolding sources of stress – could you just give me the classic ones that do put pressure on the person who doesn’t have the diagnosis but who’s trying to keep their life together?
Ben: Oh, well look, the classic is just someone you love might die. Alright, so that’s, you know, the biggest stuff. If you’re not stressed by that… I wonder what you would be stressed by, you know? I mean, when you see those stress scales of, you know, the most stressful things in life and how it includes, you know, moving house and changing job – number one is always bereavement of a loved one. And so, when someone’s life is threatened, you have the ability to have prospective grief, as in the amount of grief you would feel if you lost them – you can imagine that because you care for them so much.
Julie: And there’s a sort of pressure as well, isn’t there, to not show how frightened you are because you’re trying to reassure the person that you love, so it’s that combination of deep feeling and resistance to express it openly so you don’t alarm the person themselves.
Ben: That’s definitely, definitely the case with some people. Um, it’s not particularly helpful to do that [laughs] so, you know, I mean often if you’re talking about a partnership, you know, a very close loved one – most people lean on each other when they’re doing something difficult and so it’s quite useful to lean on your partner and say “I’m scared”, even if the thing you’re scared about is losing them. You know, support is always two-way in a relationship, which is the point of a relationship.
Julie: So you think it’s good, it can be good to talk openly about our mutual fears?
Ben: Yes, most definitely, most definitely. And we know that in terms of both the research into couples in cancer but also into carer-specific research. We know it’s better and, you know, you’ve always – well, most people – have dealt with difficult things by talking about it together and leaning on each other. And to suddenly face probably the hardest thing either of you will do and feel like you have to do it alone is… you know, quite obviously difficult and sometimes damaging.
Julie: You know, there’s clear practical burdens that fall, like navigating the healthcare system, there might be financial issues, carers may also still be working, so they’re juggling multiple pressures. So there’s a myriad of reasons why someone might be feeling distress. Can you give us examples of the kind of, I suppose, physical, emotional symptoms – if I could use that term – that may appear in a carer and would be useful for them to reach out for professional help? Just to give us a sense of how it affects people.
Ben: Yeah, so I think what you’re talking about is carer burnout. Yeah, so, I mean physically the things you’ll notice are the general run-down stuff. So you know, coughs and colds, if you always get a stress rash or cold sores or those sort of things, you know. Psychologically, there’s a few things. The very first thing that people notice is irritability, you’re just snappier than you mean to be and snappier than you normally are. So, with all of these things there’s going to be a change from your normal level, so there are other things that rely on a lot of mental energy – so things like executive function, short-term memory, planning, those sort of things. If you find suddenly you’re walking into a room and don’t remember why you went in there or, you know, you lose your keys all the time, those sort of things – that’s often a sign that you, you know, your executive function which is quite energy-hungry is not getting the energy that it needs and is probably otherwise occupied. That can be another sign, you just start… [pause] you know, your head doesn’t work as well as it used to. You’re not quite as sharp.
Julie: And that’s hard, isn’t it? Because you’re trying to help the person who’s got the cancer diagnosis negotiate this elaborate health system, get to different kinds of treatment, maybe even understand treatment options that are being explained. So it’s a time in life that you want your executive function. [laughs]
Ben: Exactly right, exactly right. You know, that’s where I’m often encouraging people to give up on trying to remember everything. You know, this is the time to really rely on all of your, you know, your phone or notepads and stuff. Write everything down, plan everything out – don’t try and keep it all in your head because you’ve got enough going round your head at this moment. So yeah, um, physical changes in terms of burnout. Cognitive changes and irritability and that sort of stuff. Um, sometimes you might start noticing, I suppose a demoralisation or a sense that things are… You start losing a little bit of optimism, I suppose. You just start thinking everything’s a bit rubbish and that’s another big sign that, hmm, maybe you’re getting a bit burnt out. If you’re always like that, then that’s no change, that’s just normal, but that can be a real sign of burnout – a change in that direction.
Julie: And when you use the term burnout – are you talking about depression and anxiety?
Ben: Ah, no quite but it definitely can lead to those. So I would talk about anxiety disorders, so definitely anxiety, because anxiety is just worry. So, yep, you will have anxiety as everyone will. But an anxiety disorder or a depression is definitely a really unpleasant end point of burnout. Um, you know, but before that happens, sometimes it’s just you reach a point where you’re being a carer that you’re not happy with, you’re being a person that you don’t like, which is worth doing something about even before you reach, sort of, mental illness stages.
Julie: And it’s interesting you say “worth doing something about” because I’m assuming that when someone you care about has got a life-threatening illness, you… almost your natural instinct is to put their needs first and to suppress attention and awareness of your own needs. What’s your advice about that? Because, you know, there’s an urgency about cancer isn’t there?
Ben: [sighs] Well, there is… and there’s not. There is urgency in terms that things need to be done immediately, but also, also we sort of consider cancer as a chronic illness in the way you deal with it psychologically because it does hang around a long time. It’s not a meningitis or something that you need to do something THIS afternoon. It’s months and years and then, you know, with good results, it’s years and years and tens of years, it’s lifetimes. So, yeah there are urgent moments, but you can’t always put someone else’s needs above yours – even if you don’t want to, you know, leave your loved one to go for a walk or something, if that’s what works for you… um, you sometimes have to do it for them in the sense that this is part of the job of being a carer.
Julie: That’s almost one of the key messages of this conversation, isn’t it? You’ve got to look after yourself in order to look after the person with the diagnosis, and in my own experience, I’ve had cancer myself, but in observing others – well, I can speak for myself, you can get very clingy and needy particularly if you’re lucky enough to have a very good relationship with your partner. You know, you want them around to help you cope with the fear, so it’s an important message to give to partners, carers, isn’t it? That you’ve got to look after yourself.
Ben: You do, you do, yeah. And, you know, quite often the partner feels the same thing. They may not want to go for that walk because they think “I want to be around this person, you know, I love them and care for them.” Um, and that’s why, you know, treating it more like work or a job – this is part of the job – I think is an easier psychological strategy than saying ‘Oh, this is my time now.’ or anything like that. Because most people who are in these positions of carer, they’re quite happy to give up “my time”, do you know what I mean? It has to be seen as part of the thing you’re doing for them.
Julie: And so what are things that are fundamental to self-care and being resilient for the long haul, as a carer?
Ben: Yeah, so you could, you could group these in lots of different ways, but in three broad categories, I think the first thing is: doing things that feel meaningful to you. So that might be, you know, just a conversation with someone about something other than cancer. That might be art, that might be a TV show you like. Just something, you know, you get some fulfilment, some meaning from – so, meaning. Social connection, continuing to socialise – one of the common but worst things people can do is completely withdraw from all their social circles and just become a patient and a carer and not anything else. You know, what you’re always aiming for is to be a whole person. So you’re a cancer patient and, you know, and a friend and a daughter and a mum or whatever, and the same as a carer. You want to be a carer and a, you know, tennis player, and a librarian and, you know, be as whole as you can be. So yeah, continuing social connections are so important. And the third sort of, um, category, I suppose, is physical health. So just continuing to exercise, which we know is just sooo important for mental health, so important for dealing with stress, so, you know, everyone really should be trying to find some way of exercising, and then doing those other things that are physiologically important like eating and sleeping.
Julie: The focus on self-care, it’s clearly critical, but with all the demands that can come on you when someone may get very unwell, if only for short a period of time, how on earth can you fit in your care for your children, if that’s fallen to you, maybe cooking? Um, bit of work? Managing finances? The unexpected admission or appointment or test… you know, it’s quite an unpredictable, lively thing – accompanying someone through cancer. Any observations on how to make it fit?
Ben: Okay, so two thoughts. Um, balance and priorities. But the first thing, you know, you said it is unpredictable and I think that’s important when we talk about balance. People usually talk about work–life balance but in this case you might be talking about self-care–carer balance. The thing about balance is… it’s a verb, right? It’s something you do. If you’re balancing a chair or a pencil or something, you have to constantly be watching what it’s doing and readjusting. Whereas most people have this idea that balance in that case is: “I’ll spend four hours on this and eight hours on that. And that’s what I’ll do all week.” It doesn’t work because cancer is so erratic. What you do – it comes down to priorities. So it’s always about what’s the most important in this moment. Today, if someone is very, very sick, obviously the most important thing is: get them to hospital. Or, you know, if the children need to be picked up – that’s important and you’ve got to do that. Um, but, you know, you do that today and then tomorrow they’re much better, they’re feeling fine, they might be safe in hospital and it means that actually now, “Now, I really do need to do the washing” – you know what I mean? And self-care is just one of those things that you need to balance and you need to constantly be thinking: “What’s the most important now?’
Julie: You’ve somehow got to make self-care a job that’s as important as the shopping for food and the cooking – that’s what you’re really saying. When you can. So if you can get to the beach and go for a walk or have a coffee with a mate or go for a jog – you’re not taking a break, you’re doing what’s necessary to sustain the care that will keep your loved person alive.
Ben: Exactly right. It’s one of your jobs of caring for them. It’s one of… it’s part of the carer role. So it’s about noticing that priority and saying, “Right, now, I’m really cranky and I think it’s time I get out of the house and do something just to deal with that irritability. That’s become a priority today, so I need to push down on that side of the balance, balancing plate, whatever you…” – do you know what I mean? And so it’s always about reading the priorities and upping the self-care. See, we have this idea – and it’s, I suppose, since we all stopped working in fields and factories and that sort of stuff – that, ah, things that are physical which, you know, often now are artificial like playing sport or going to the gym or something. But things that are pleasurable are leisure and therefore lower priority. Without realising all of the benefits we get from those things like socialising, physical health and meaningful activities. There’s greater benefits than just pleasure and so recognising that helps you increase them in priority against other things. And so sometimes it is more important that you go to the beach and have a walk with your friend than do the washing or, you know, clean the house or whatever.
Julie: You’re listening to The Thing About Cancer, a podcast from Cancer Council NSW. I’m Julie McCrossin and I’m talking to clinical and health psychologist Ben Britton about coping as a carer of someone with cancer.
If you have any questions about this topic, or just want to talk to someone about your concerns, you can call Cancer Council 13 11 20. And they can send you a free copy of Cancer Council’s booklet, Caring for Someone with Cancer. And for links to the online version of that booklet or any of the services we mention, or to listen to more podcasts, visit cancercouncil.com.au/podcasts and click through to this episode Cancer Affects the Carer Too.
In a moment, Ben is going to talk about when to seek outside help and how caring can affect relationships.
Julie: If you’re in a situation where the person you’re caring for is really unwell for a prolonged period, number of weeks, are there quick things you can do to give yourself a moment of relief? Or do you need to get help, ring friends, get ‘em in and get out?
Ben: Well, I see that as doing something, you know? As in if you’re… when you say quick fix, I think it probably depends on what the thing is you’re trying to fix. Um, you know, so people often talk about coping. Um, coping is… [pause] in our world, it’s a functional thing. Are you doing what needs to be done, those priorities for the day? And if you’re doing those – you’re coping. A lot of people get the sense, “Oh, I’m not coping” or say “I’m not coping.” When what they mean is, “I’m finding this really hard and it’s much harder than normal.” So, just because you find this hard today, doesn’t mean you’re not coping, and maybe there isn’t anything necessarily to fix. IF you’re not doing it though, if you’re finding, you thought you just can’t get to pick up the kids or you just can’t, you know, maybe you just can’t go to the hospital again today? You know, that’s definitely when is the moment to call in someone else – but that’s still you doing something! I think it’s important that people don’t feel like that’s my tapping out, giving up sort of reaction. That’s still a deliberate action to make that thing happen and therefore is still a form of coping.
Julie: When do you seek help? I mean, Cancer Council 13 11 20 is a source of information and advice and Cancer Council have carer groups and so on, and you could almost call that mainstream, couldn’t you? Something everybody could do. But when does someone say, “I need more, I need to see someone like you, a psychologist working in cancer.” How do you know when you’ve crossed some sort of red line?
Ben: So it’s very hard to know when you’re in it, but I think there’s a few rules of thumb. Probably the biggest rule of thumb, I think, would be when you’re stressed or your carer burnout or whatever is happening, just your upset-ness, is getting in the way of stuff. When you can’t do those cares for the person you care about or you can’t drop the kids at school or you can’t attend appointments anymore, or you know… you sort of stop all the, sort of, household stuff. You stop buying food, you know, when it actually gets in the way of something. That’s when, you know, you really need to do something about it now because it’s not functioning anymore.
Julie: If you want to find out at the hospital or with your team, is there specific professionals who can help a carer – who should you ask for and how do you get that help?
Ben: So the first person I would ask is the nurses. You know, they’re an excellent caring professional – they’ll understand what you’re going through and they will know what’s available in that hospital. What they might be able to do then is, um, hook you up with a social worker – and now there’s more social workers than there are psychologists and they’re often very, very responsive so they’re most likely to be able to see you that day. The slower option would be an appointment with someone like myself in a psycho-oncology service, um…
Julie: And what is psycho-oncology?
Ben: It literally just means psychological health of people with cancer. So, um, it’s mostly psychologists, a smattering of psychiatrists, most people have clinical psychology training. So it’s where you go and do stuff for your mental health. So obviously, the clinical psychologists are going to do more of the talking therapies-type work and the psychiatrists might give advice on medications.
Julie: And they’re there not just for the person with the cancer diagnosis but for the carers as well?
Ben: In most psycho-oncology services in NSW, that’s the case. It’s not necessarily the case Australia-wide but it’s definitely the case in our hospital.
Julie: What I find so hard in this cancer area though is that, you know, a lot of treatments are challenging for a period of time, with side effects and so on. And for the person watching someone they care about suffer to a degree – and of course, teams are great with pain relief and psychological support – but there is, you know, there’s a challenge involved in getting through this experience. You know, in a way, everybody would need some sort of help to deal with that, wouldn’t they? You know…
Ben: Most definitely, yeah. And so, this is, you know, potentially why there’s higher rates of distress in carers, is they don’t necessarily feel they deserve or should ask for that help at its lower levels, you know. And that’s when they can avoid seeing someone like me because, you know, just reaching out to one of your mates and saying, “I’m finding this really hard. I’m really upset,” or “I’m really scared.” Making sure, you know, you stay in that one-night-a -week sport thing or making sure you, you know, do something nice. Or, like I was saying before, speaking with your partner and saying, you know, “I am upset, I am finding this hard.”
Julie: And what about someone like, um, if a carer sees their general practitioner? Someone who knows them and can keep an eye on them?
Ben: Yeah, so, look, GPs are also a good first point of call, but in my experience I think a lot of carers are a bit reticent to put themselves forward as the one who’s struggling. So, by all means, if you have a good relationship with your GP, that’s a great person to speak to because they have that longitudinal, ongoing knowledge of you, and they know what you like, what’s normal for you. Um, but yeah, also just ringing the Cancer Council can be a really useful point to contact and just say, “Hey, is this normal? I’m feeling this way,” and they can say, “Yeah, that’s pretty normal.” Or they can say, “Hmm, maybe you would like to go and see your GP. It might be helpful.”
Julie: Now, a lot of people become carers for their husband or wife or partner – so can I just come now to the question of… well, how these relationships can change? I mean both in terms of enrichment, but also in terms of some of the challenges that you see.
Ben: It’s an experience. Cancer is an experience, not just an illness, right? And that’s why cancer in a relationship changes the relationship, not just the cellular make-up of the patient.
Julie: What do you mean by experience?
Ben: Well, an experience is something you live through and has no, um… it doesn’t need to have a physical manifestation. It doesn’t have to be something you can put on the table and weigh and measure. And, as I said, it affects everyone around that person, not just the person who’s got the diagnosis.
Julie: It’s not just a physical illness…
Ben: [agreeing] Not at all.
Julie: It’s a mental, emotional, spiritual experience.
Ben: That’s right, that’s right. You know, you have a cold, it’s not really an experience because you have the cold, you feel terrible, when you get over it, you’re back to how you were before. That’s not the case with cancer. You’re a different person having gone through that experience so, you know, it changes you. There’s experiences that both people go through that, uh, are large, sometimes traumatic, and life-changing. So, the way that changes the relationship is endless in that some are made much, much stronger and some, unfortunately, end. So it’s a very stressful period and so how that relationship fares, you know, the only thing you can kind of predict is to say that it will be different afterwards. But it doesn’t have to be worse, you know, a lot of people do become closer.
Julie: If the person you’re caring for is your sexual partner, another issue might be what will happen to your sex life, in the short-term or also in the long-term, and you might feel that that’s not the sort of thing you can ask about or should even be thinking about. But I can tell you that for many people, maintaining that intimate connection is really important. We’ve actually done a whole podcast on that. You can listen to it now by going to cancercouncil.com.au/podcasts and click on the Sex and cancer episode.
Julie: We’ve talked a lot about the issues of people that are caring for their partners, but of course carers can also be the children or the parents of the person with cancer or sometimes they’re other relatives or friends or even neighbours or colleagues. A common situation is that you may be caring for an ageing parent with cancer, and, Ben, I’m interested in your sense of the particular challenges adult children can face when they’re caring.
Ben: Look, I mean, I think this is one of those, um, difficult moments in life. You know, we talk about transitions and, you know, some, uh, deep psychoanalysts discuss life just being about separation from parents and, you know, individuation and becoming your own self. And that’s, towards the end of that, if you think about it, you know, taking that carer role over from the person who cared for you when you were most vulnerable and now caring for them at their most vulnerable, is a big moment for some people. Other people just cruise into it without any real issue, but it’s about, um, yeah, I mean, it’s worth noting that it’s not an easy thing. It’s not always to do with illness. I think that probably makes cancer a bit unique, as in, this is something that people might deal with as someone ages, as their parents age, and they might, you know, have some dementia and slowly decline. With cancer, it can be quite abrupt. They’re travelling fine and then suddenly they need a lot of help. The end point is the same, the strategies are the same, which is, you know, be as open as you can, look after yourself, communicate. Ah, but just acknowledging that it’s hard. I think – this is always the theme today – as in, just acknowledge it. It’s hard, what you’re doing, it’s probably the hardest thing you’ll ever do as a carer for someone who’s got cancer. And so, you know, give yourself a break. Realising that you’re finding it hard is not failure.
Julie: Now, Ben, there’s a lot of decision-making in the cancer world. Is conflict common? Even just about what treatment to go with or when you should be getting back to work?
Ben: Yes, conflict is common. It’s not necessarily about… directly about the cancer, though. I would say that most people try and, you know, reach a fairly comfortable consensus amongst themselves of, you know, what treatment to have and when to go back to work, those sort of things. Yeah, that happens sometimes. But conflict is common just in all of the surrounding other issues, you know, as in, um, parenting is a really big one that causes a lot of conflict. Money. So all of these things that, you know, we generally fight about anyway, um, with added stress and tension, people aren’t as tolerant of each other, what is important to me has changed from, you know, what I said last week. You know, all of those sort of things mean that, yeah, conflict is much more common.
Julie: It’s interesting, it’s almost like you’re saying it’s normal life, just much more intense.
Julie: Everything’s ramped up…
Julie: Yeah, that’s interesting. And another issue, you’ve mentioned irritability as a sign for a carer they may need to do something, self-care to get rid of it. What if the person with the diagnosis is lashing out or the carer’s lashing out? You know, what is your advice then if you see that emerging in your relationship, particularly if it hasn’t happened before I guess?
Ben: Ah, okay, so there’ll be two things. One is it could be a result of, sort of, organic diseases in that there’s stuff going on in their brain which can change behaviour and change personality… or the result of medications doing the same thing. So if that’s the case, you probably want to cut them a bit of slack and try and be water off a duck’s back, that sort of thing. If, however, it seems to be more an irritability due to stress and they’re tired and, you know, it’s not caused by anything aside from just how they’re feeling [sighs] you know, it’s a relationship, it’s still a relationship, you just happen to have someone who’s sick and so, like always, if you can put up with that today – that’s good. And, you know, whether someone’s sick or not, you would always say, you know, if you’re not bothered by someone lashing out, then fine – let it slide, you know, whether someone’s a cancer patient or not. Just because they’re sick, though, doesn’t mean you have to be a doormat and you have to take those things, because that’s just going to damage your relationship, which is the very thing you’re caring about. So, you know, as I say, it’s the same as someone who isn’t sick. If someone lashes out and it hurts, you want to deal with that through good communication. You don’t want to get into a war, so you try not to lash out in return, you know, try not to score points in revenge, that sort of stuff. What you want to do is say, “Wow, that was pretty upsetting, um, you know, that really hurt.” All of that sort of relationship stuff that everyone’s heard lots of times, but just keeping it on how this has made me feel as opposed to “wow, you’re a jerk.”
Julie: You know, as I’m listening to you, I realise – I had a stage 4 cancer, I was a seriously ill person – I never had a night in hospital, the whole system was set up as an outpatient, for which I was immensely grateful. But what that also tells you is, the system is set up in the expectation of care at home. And there must be people who don’t have people.
Ben: Patients on their own?
Ben: Yeah, yeah there really are. It’s really difficult. As you say, the system assumes there’s going to be someone who’s caring.
Julie: People often talk about family carers, but there’s lots of families with silences and long separations, aren’t there?
Ben: Yeah, yeah, so you know, there really are. There’s some very, very sad stories. At the same time, there’s some really wonderful stories of neighbours, and um, you know, football clubs. You know, one homeless bloke I saw, you know, his friends from the park were his carers. There are some amazing stories of people who… perhaps the patient didn’t realise that these people cared about them, but they are carers. They do care.
Julie: And you can always talk to the hospital social worker, or call Cancer Council 13 11 20 if you’re on your own and you’re not sure where to get support.
Julie: So, throughout this chat, Ben has emphasised that it’s really important for carers to think about self-care, to look after themselves as well. And that’s something that Georgie soon realised when her husband was diagnosed with prostate cancer just three months after the birth of their first child.
Georgie: I, ah yeah, needed a little bit of time to myself, even if that was just, you know – at that stage we were living in a two-storey place – to come downstairs and have a moment, take a deep breath [sighs], put the kettle on for the 1800th cup of tea that he’s asked for that he drinks two sips of, that you’re really pissed off of because you’re still washing up those cups that are still there, and the baby’s crying and what the hell are you going to cook for dinner? Um, all of those type of things, just take a moment [sighs], and I’d light a candle, put some music on. Okay, I took up, um, dancing by myself, I did a whole lot of things. I did a flower-arranging course, um, I took up sewing. Anything that could just give me a second to me and, you know, that was important for me, but have something that’s just yours.
Julie: Well, that’s it for this episode of The Thing About Cancer. Thanks to Ben and Georgie 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. And if you’d like to subscribe to the show, you can do it in Apple Podcasts or your favourite podcasting app.
Julie: If you found this episode helpful, you might want to listen to our podcast on Explaining cancer to kids. In that episode, I talk to John Friedsam from CanTeen about how to communicate with children and young adults when someone close to them has cancer.
John: What the evidence would tell us is that the best results for the whole family, not just the children but for the whole family, is to have open and honest communication about it, even though it’s really hard.
Julie: You can find that episode – Explaining Cancer to Kids – 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 you’ve been listening to The Thing About Cancer – a podcast from Cancer Council NSW, produced by Jenni Bruce and Miles Martignoni.
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