John Friedsam, CanTeen Australia
Research shows that telling children about your diagnosis and treatment can provide reassurance, not just for them, but for the whole family – but how do you know what to say?
In this episode of The Thing About Cancer podcast, Julie chats to CanTeen’s John Friedsam about different ways to talk about your cancer diagnosis with your kids. John tells us why being open with kids can actually help them cope better and gives us some great tips on how to talk to kids of all ages about cancer. We also hear from Suzanne, a mother who had to explain her breast cancer diagnosis and treatment to her children.
– Suzanne, mother of two, diagnosed with breast cancer
Use your communication strengths
John points out that every parent has a unique relationship with each of their children, so you need to open up the conversation differently with each one – think of what they relate to. Do they like sport? Are they creative? What are your own communication strengths?
– John Friedsam, CanTeen Australia
Keep it simple
You’ll hear some great examples of simple explanations and hands-on demonstrations for younger children, and why setting up a “communication contract” can be a great way to stay connected with teenagers.
When to get support
John also talks about how to see the signs that your child is struggling to deal with your diagnosis, and where you can turn for support.
Want more information or support?
If you heard something mentioned in the podcast, you’ll find a link for it below. We’ve also added links to other sources of information and support.
From Cancer Council NSW
- Talking to Kids About Cancer – a guide for people with cancer, their families and friends
- Cancer in the School Community – a guide for school staff, including when a student’s family member has cancer
- Easy-to-read information about cancer – cancer types, treatments and issues
- 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 about cancer
- Cancer Council support for people coping with cancer – information and support online, in person and via phone
- Cancer Council Online Community – a supportive online community for people affected by cancer
From other organisations
- Kids Helpline 1800 55 1800 – 24-hour telephone and online counselling for young people aged 5–25
- Lifeline 13 11 14 – 24-hour crisis support and suicide prevention
- CanTeen – support for young people aged 12–24 living with cancer, children and siblings of people with cancer, and young people bereaved due to a cancer-related death
- Camp Quality – services to build optimism and resilience in children aged 0–13 who are living with cancer themselves or have a sibling or parent with cancer
- Young Carers – camps, activities and support groups for kids who care for a parent with a serious illness
- Kids’ Guide to Cancer – Camp Quality’s free educational app for children aged 8–13 who have a parent, sibling or other loved one with cancer – addresses the big questions kids have about cancer
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, and stuff happening. It's not real, it can't be real.
[woman 2] It's something that we don't talk about
[woman 3] This feeling of being overwhelmed - it will get better once you have a plan and you know what to expect and what's going to happen.
[woman 4] It's not going to be like this all the time
[various voices] The Thing About Cancer: A podcast from Cancer Council NSW. Information and insights for people affected by cancer.
Julie McCrossin: Hello, I'm Julie McCrossin and the thing about cancer is that it can feel like a really tough thing to explain to kids. How much do they need to know? Won't it just confuse and scare them? Isn't it better to protect them?
John Friedsam: What the evidence would tell us is, the best results for the whole family, not just for the children but for the whole family, is to have open and honest communication about it, even though it's really hard.
Julie: You just heard from John Friedsam from CanTeen, an organisation that does great work supporting young people affected by cancer. Later in the episode he's going to give us some tips about how to talk to kids of all ages about cancer and explain why talking openly to kids can actually help them cope better.
Just to be clear, this podcast contains general information only, so we recommend you talk to appropriate professionals about your individual situation. You could also call Cancer Council 13 11 20 if you have any questions.
Before we get back to John, here's Suzanne, a mother who had to explain her own cancer diagnosis and treatment to her children.
Suzanne: I was frightened enough and I was really protective of not making them fearful that I was going to die. So, I did explain to them though that I was having one breast removed, which they thought was hilarious, and I sat them down one night and said, "Now do you want to ask any questions about what's happened to Mummy, you know, I don't want you to be frightened, and I don't want you to feel any insecurity about what's going on because I'm going to be fine. So if there's any questions you have, please feel free to ask me." [Laughs] Here are these two little boys, staring at me over the dinner table and my husband's sitting there thinking, "Oh dear, what's going to come out of their mouths?" [Laughs] And the other one, who was six at the time, says, "Oh, I have a question", and I said "Oh yes", and I was waiting for some sort of question that he's a bit frightened about, about death, and he says, "So what did the doctor use, scissors or a knife?" [Laughs] So that was about the depth of our conversation about that. So they were very, they're very simple at that age, so they didn't really need too much information, but I didn't think it was fair to conceal everything. So they knew, they would come and visit me in hospital, when I went in for both surgeries. So, nothing was concealed from that perspective, but I said it was cancer, because I didn't want them to hear it from other kids at school and then think, “Well, I wasn't told that”, but we made it very clear to them that the doctor had got it and I was just having treatment for precautionary measures, just to be safe. So I used simple terms like, “He's just mopping up, like when you spill something on the floor and he's just mopping up and getting rid of the rest of the stuff.”
Julie: As you heard at the start, John Friedsam from CanTeen says research shows that telling children about cancer can provide reassurance, not just for them but for the whole family. But how do you know what to say to them?
John: Every parent has a unique relationship with each of the children, so whether they have a little one at home or a teenager, those individual communication strengths are the things I'd be exploring with that parent, or to look at where are your communication strengths, what's your “in” with that kid, what's your “in” with your other children, and let's harness those for each of them individually.
Julie: Give me an example of what you mean by an “in” −
John: − yep
Julie: − and then how you might approach opening the conversation with children of different ages.
John: So, typical teenager, driving to sports practice, they just kind of grunt and they don't want to chat with me that much, that can be a time that you might have a little bit of parent dialogue, finding out about how’s it going at school, how's it going with work, how's it going with the cancer stuff. So that could be an opportunity to then link in with an older child, sometimes it's Mum or Dad plays sport with them, they're going playing, shooting hoops in the backyard. It can be those little times that you have that one-to-one time. So what I've found can be a great “in” is using those individual times rather than a whole sit-down family communication around, you know, “We're all going to sit down and have this big family chat at the kitchen table around what might happen.” Now if that's a previous communication strength for a family, go for it, but if it's you have young people at different age ranges and one's really sensitive and one's really practical, I would go down the line of approaching them separately.
Julie: So what I'm hearing is, think about your individual child and where you would normally have good rapport and communication and make that the opportunity to raise the topic?
John: That's right. If you were talking to me about that I would say I'm not the expert on your kid, you are. You know them better than anybody. I can help you with what the evidence-based stuff tells us and how to help get them over the line, things that have worked for other families, but in the end, you have that relationship and we need to build on that because one of my favourite sayings is: “You're about to enter into communication as a process and not an event.” Cancer is a process. If you have a one-off conversation that will probably fall flat, but it's an introduction to a number of conversations and opening that door to communication with the kids.
Julie: I'll come back to how you might open that door in a minute, but just coming back to the parent who's listening who's still thinking, “I just think it will scare my child witless if I say the word cancer to them.” Now you said the research indicates it is the thing to do. As I understand it, the idea of secrets is generally a bad idea. Can you explain why to the parent who's having trouble, thinking, “Oh, I need to have this conversation.”
John: Young people are little barometers and they pick up on stuff. One of the best ways to illustrate it for you is a typical thing I hear working with young people. A lot of young people come to me and say, “I think my parents are getting divorced”, and you're like, “Why do you think they're getting divorced?” “Because something really big is happening. I hear crying through the walls, the phone's ringing more often and I know it's so big they can't tell me about it.” And so, their brain goes to talking to their friend at school who went through a similar thing and they found out – hey, their parents were getting divorced so maybe they think that's what's happening. So from an adjustment perspective, that young person's going to come up with what they think it is, because they're going to pick up on “something is different”. Whether it's Mum used to be the one picking them up from sport after school but now it's Dad, or now it's a friend of the family running the car pool. Those little changes, if they don't know why, they're going to go – “something's happening”. If we don't tell them the truth, they'll start to adjust to whatever it is in their mind, whatever they've come up with in their head to try to explain these differences that they're feeling. So it's easier for them to adjust to the truth. What can then happen down the track is that if they then find out the truth and they've spent all this time trying to prepare themselves for something they've conjured, then they can have a little bit of a “shoot the messenger” kind of: "Well, why didn't you tell me this before? Didn't you trust me with this information?”
Julie: − and they may lose trust in you? So you're essentially saying, they're going to notice changes so respect them and give them the truth, and I suppose it also then prevents them finding out inadvertently or from someone else … what would be the impact of that, if they found out inadvertently?
John: Well, it happens all the time! A concerned auntie or uncle says, "Don't tell your mum I'm telling you this." Grandma or Grandpa, a teacher, somebody might let it slip, and that's the challenge for secrets is that sometimes they slip through the cracks when you don't want them to. I've worked with couples where one parent has told and said, "Don't tell your mum I'm telling you this" or "Don't tell your dad I'm telling you this", and so having an open and honest approach is definitely the most enabling and it helps most of the parents because it's scary, to think about dropping the “cancer” word into conversation, parents are scared about, “Are they going to ask me if I'm going to die?” or
“What kind of questions are they going to ask me and I'm not going to be able to answer them?” but, just getting that information out, just opening the door again, opening the door to that conversation is the first step.
Julie: Look I want to come back to this question then of the parent who is now convinced, yes I do need to talk to my child, what's the best way to do it? Earlier in our conversation you were saying, choose a time that you know you normally have good quality conversation with your child. I guess that's another way of saying, you're the expert with your own child, you'll make the right choice, but I've also heard it said, that you shouldn't give too much information. I wonder if you could think of a child who's maybe five or six, somewhere of that age, and give us an example of how you might raise it? What sort of language or metaphor you might use and how much you should reveal?
John: Normally less is best and keep it simple. So a five- or six-year-old doesn't need a medical dissertation. They're not going to understand the biology of cancer. They're more than likely going to understand the impact of cancer and how it affects them. One great example, working with a grandma years ago and a five- or six-year-old – knew she was a very cuddly hands-on grandma and she had breast cancer and had to have a mastectomy. So for that age, that young person is going to notice that the hair is falling out, that young person is going to notice that when you jumped up to hug Grandma and she used to have two voluptuous full-figured breasts, that now she only has one. So she approached it from the angle of, "You know, I have to have some surgery, I have a disease called cancer. The doctors need to remove it and that means they need to take one of my boobs off." And he said, "Okay." "And then I have to have medicine that will make my hair fall out but that will help me as I go forward. So it makes my hair fall out but that also might be a sign that it’s going after the cancer cells that aren't meant to be there." And, he's like, "Okay, sounds good." And he was fine. That's all he needed to know and then they got to the point down the track when Grandma would pick him up and he'd say, "Grandma, I know you don't have your booby because of cancer", and so it was their little thing, so they were able to demystify this talk about her missing breast.
Julie: And what I hear there is to think very much in a way from the child's point of view about how will this affect me the child, and then reassure them about how that affecting will happen. So it's really standing in their shoes, and keeping it simple with a lot of reassurance.
John: That's right. And reassurance and say, "If you have any questions you can always ask me. Know that you can ask me, even if I don't know the answer to it, I'll try to find it out for you. But know the door is open for you to ask me."
Julie: So it sounds like you do need to say, “This is going to be the first of many conversations, that's enough for today.” Because often children don't like long conversations, do they?
John: General rule, short and sweet. But if you have any questions you can ask me. And as you start to get older and the age demographics and you start to get into that pre-teen, they're on “Doctor Google” and they're searching, and they might type into Google or Yahoo or whatever search engine, “breast cancer” or whatever type of cancer, and they're going to be searching for those things.
Julie: Well that's an important point. As a cancer patient myself, I was advised to only go to certain sites and I was grateful for that advice. Should we be giving our older children the sites to go to, assuming they'll want to google, advise where to google and encourage them not to venture further?
John: Yes, there's a whole world of misleading facts and things that can terrify people, by reading the wrong sites or reading about a disease, where you might have an early stage, very treatable cancer, but your child picks up on the website for a very advanced-stage disease and starts to look at really poor prognosis information, and that might not be the truth for that family.
Julie: So you can talk to your cancer team about reliable websites for adults and kids. The Cancer Council has got the easy-to-read information on many cancer types and treatments, and we've put a link to those written resources and other websites on the podcast page at cancercouncil.com.au/podcasts, and click through to this episode with links to information and other reliable websites. But John, young children, they want active ways of learning. Should we be visiting the hospital and showing them where the treatment actually happens?
John: Well, hospitals can be scary places, so if you look at different stages of disease: newly diagnosed for the first time, a child that's say under seven, has to go to hospital for the first time to visit Mum or Dad who's always been this warrior and champion and never been unwell in their eyes, they're super-human, and suddenly they're not going to be well. You can make arrangements, talk to the hospital social worker, nursing staff, sometimes it’s good to go visit the hospital beforehand, that they can get familiar with the smells, the smells are different, the sounds are different; IV, if Mum or Dad's going to be on IV or if they're going to be intubated, any of those things, seeing what those machines look like, what they sound like, what a bed looks like, they can take you to an empty room and some of the other things, they might even give you a little tubing for the little ones, doing stuff with Barbie dolls, teddy bears, to show what it would be like if Mum's going to have an IV in her arm, or if there's going to be a port-a-cath in her chest, or Dad's, you can show what it's like and put the tape on there. You can put head wraps on the Barbie doll if Mum or Dad's hair's going to fall out, or Ken doll or whatever it is, so you can do all those things, and be creative with yarn, showing what IV's might look like, so that you can start to get used to what that looks like ...
Julie: ... and there maybe people listening to this now who don't know what a port is or an IV is, but I guess the essential message is that as you have different physical treatments, showing your child that same thing on a teddy or a doll will help them accept it and understand why it's happening to you?
John: That's right. Years ago we were working with a family and a woman had a toddler and she's like, "I didn't really think my daughter had picked up", she hadn't really talked to her daughter much about the cancer stuff, and one day she went over to her little dollhouse where she had Barbie dolls and different dolls in there, and her daughter had shaved off three of the Barbie dolls’ hair, and she's like, "Oh I guess she did pick up that my hair's falling out!" And so then she was able to use the dolls to talk to her about why the hair was falling out, getting Ken doll and Barbie doll into the car and going to the hospital, getting medicine, showing what it looked like with yarn, to tape to the Barbie doll's arm like getting an IV, and then just going through the whole process, and it just clicked for the child and “I get it now - it's not a mystery that you're hair's just fallen out for no reason, I understand.”
Julie: I guess a critical message is what the side effects will be and that it doesn't mean that I’m getting sicker or that the cancer's worse, but rather that's what happens with the treatment and my hair will come back. It's a big ask for parents, isn't it, because they're grappling with all of it themselves. Is it okay if you cry in front of your child?
John: Of course − but there's a little control at the end of that one. If when you're breaking the ice with your child, normal to cry and we want to be able to model normal emotions − and young people in our research at CanTeen, we can see that young people want the parents to model that emotion, they're like, “I'm looking to you to steer me here”, and that includes over-20s. So up to 25 years old going: “I need you to try and teach me here about how to process these things.” The little caveat at the end is that if you feel that you're going to lose it, just be blubbering, won't be able to talk, that's when I would encourage you to get somebody else to come in with you. So whether it be a social worker at the hospital or a good family friend, your partner, whatever the case may be, have a buddy there with you, a support person so you can have that conversation together − but a little bit of normal tears where, even like a hard cry, is fine, but if you are going to become uncommunicative then get in that support for yourself.
Julie: And a lot of times, young children can think if something bad happens it's their fault − is that correct and how do you address that in the cancer situation?
John: Particularly for the younger ones, I would definitely say − it's not your fault. It's not that cause and effect logic where: “I was naughty and after I was naughty, two days later I found out Mum or Dad has cancer.” It's not your fault. They're not related to one another.
Julie: It might be worthwhile to repeat that at different points in your experience of cancer −
John: − definitely
Julie: − and also the idea, “Can you catch it?” Should you address that fear?
John: Yep, I would think all of them, and one of my key advice points is start with questions: What do you think cancer is? What do you think, have you heard of radiotherapy? Have you heard of chemotherapy? I've heard some crazy stuff like kids thinking that parents will be radioactive, or they're going to glow, so it's like: let me start with your understanding and then I can customise my answers for your understanding. So you might be surprised with how much a young person knows, because they might have heard it because maybe a teacher at the school had had something and they'd had a cancer workshop because the principal wanted to bring that into the school community. Sometimes things like that happen that we don't know about. So starting with questions can be a really good starting point and then you can understand where the young person is, whatever their age, and then adjust your answers accordingly.
Julie: Can you imagine say a 10-year-old and the question is, “What is cancer?”
John: Let me use an analogy of a garden with you then. Your body is like the lawn − I've heard doctors explain it like this − and sometimes weeds grow in the grass, and there's different ways you can get rid of the weeds, now the weed doesn't really belong there, but it can grow there. So it's like something that’s growing inside the body, just like in the lawn, but it's a weed that we need to get rid of because if we don't get rid of it, it can keep growing and spreading in the lawn and we don't want that to happen. A great analogy because you can use − like surgery, you can explain, you can get a little spade and dig out the dandelion, you can get the Roundup and come and spray it, that can be like chemotherapy, where you spray that, but then with chemotherapy, it might kill some of the grass around it, so that could be like explaining how your hair might fall out or having symptoms where some of the healthy cells that you want to keep around might also get sick, but that's part of the treatment. So it's a nice visual to try and help explain in a practical way.
Julie: And do you have to be prepared for if the child might say, "Will you die?" and how you'll answer that?
John: Yes, they're going to be thinking it, so −
Julie − so how do you answer it?
John: As best you can. I wish I had a miracle pill for you on that one. Now it all depends on what kind of news have you heard from your doctor? If you're dealing with an early-stage disease and it looks like after surgery and having chemo or something you're going to be fine, the doctors are feeling very optimistic about your treatment pathway, then I would say just that: "The doctors are feeling really optimistic that we're going to be able to successfully treat this. It might be a really tough 6−12 months but we'll keep you updated on how we go, and any questions, come back to me. You can always ask me, because there's a lot of questions that come from this and we'll have ups and downs and at any point in the ups and downs of the rollercoaster ride, you can always ask me questions."
Julie: So how do we balance the need to reassure a child, particularly a young child, but on the other hand not set them up for a terrible shock and lack of trust if further down the track things don't go well? But on the other hand too, you might not know that for a year or eighteen months and that's a long time in a young child's life?
John: Yes it is. I would start off with letting the young people know that it's serious: "So, we've talked to the doctor and they're doing everything they can to help with the treatment. But it is very serious and the doctors are concerned that we might not get the outcome that we want. We might not be able to make the cancer go away, but every day they're developing new treatment, so we're still being optimistic”, but we're in reality − we have to start to prepare them for what might be down the track. So for families that are dealing with a terminal prognosis, the doctors have come back and said, you have a six-month prognosis, then I'd be preparing the child for that, to say: “We're really concerned, the doctors have said that they're really concerned that I'm not going to get better from this. And that means that I'm going to have a lot of treatment for the next six months and if treatment's not successful that means that I might die.”
Julie: Is there any limit on the age that you would tell a child that?
John: Depends on the child, but for the younger kids, I'd more than likely just say: “It's very serious and I'm going to have to have a lot of treatment as we go through and we're hopeful that it will have good results, but we'll have to keep you posted on how it goes and how it's going.” So, it's, be realistic, with a spin of hope at the end, is kind of the advice.
Julie: You're listening to The Thing About Cancer, a podcast from Cancer Council NSW. I'm Julie McCrossin and I'm talking to John Friedsam from CanTeen about helping children cope when a parent or other significant person has been diagnosed with cancer. If you have any questions about this topic or you just want to talk to someone about your concerns, you could call Cancer Council 13 11 20. For links to more information or to any of the services we've mentioned or to listen to more podcasts, visit cancercouncil.com.au/podcasts.
We'll go back to John in a moment, but first we're going to hear from Suzanne again, who went through treatment for breast cancer when her children were just five and six.
Suzanne: We tried to keep things as normal as possible by my mother doing pick-ups and my husband would drop them off in the morning, my mother would pick them up and so their day didn't really change. We had friends that pitched in and took them to sporting, training things, mid-week and on the weekends. My husband was always on board so I even signed them up for some extra things with other friends that mothers could take them to, pick them up and drop them off, like art classes. So, between friends and family they didn't really experience too much change in their life.
Julie: So John, my understanding is with young children, it's so important to reassure them, they're going to be okay, that their routines, their life is going to continue − normal bedtime, normal routines, normal housework or chores. Do you just try and keep it as normal as possible? Does that give a security frame for the child?
John: Yes, there's safety in those boundaries and keeping young people − they thrive in that environment. I've worked with a lot of families that are like, “I don't want to be disciplining my children whilst we're dealing with all this difficult stuff.” It's really important to try and keep those patterns up, keep that safety up for those young people, cause they'll know where the boundaries are and they feel safe in those boundaries.
Julie Why is that important, this maintenance of the normal family activities, even if you have to get outside help to do them?
John: It’s that normal routine, around those formative years of friendships, those friendship groups, being able to be involved in things at school − young people are really looking to form and build those bridges with their peer groups. So oftentimes I'll look at it as: we have to try to remember to give our children permission to play. Suddenly it can be really serious, but if they're moving up in age ranges, they can be like, “Ooh, maybe I shouldn't go play because Mum's sick and that's not fair if I do that”, or “Maybe I should stay home and maybe help with the dishes more than go and play netball”, and or whatever the case may be. So giving those permissions to say, it’s really important that we're able to keep doing what we're doing. So I want you to keep playing sport. I want you to keep being in student government. I want you to keep doing these things. We need to do that and I want to hear about them. I don't want to just talk about cancer all the time, I want to hear about boyfriends, girlfriends, work, homework, how you're going with assignments, how things are going with your neighbours, how things are going with sport, whatever it is, to keep those normal conversations going.
Julie The way you're talking, it's as if that's good for the person with cancer, as well as the rest of the family?
John: Yes indeed. Years ago we were doing all these bunch of groups, parent support groups, and we found that the strategies were equally as helpful for talking to partners. It's like, oh yeah it's really important if you keep dancing or being part of a quilting group or doing those things that take care of yourself, so you can have that outlet to burn off the stress, to have that camaraderie of people that isn't just about cancer, it's about life and engaging with life. There's one tip that is fantastic for chatting with young people and also with partners, and I would encourage everybody to try it, I haven't seen it backfire once, and I call it “developing a communication contract” − because unless you do that, everybody's always thinking about cancer all the time. So whatever it is that you as a parent − is it once a week, is it twice a week − where you as a mum or you as a dad need to fill them in about the cancer stuff and say, how about we do this, every Sunday we have 30 minutes where we talk about the cancer stuff and then the rest of the week, we talk about the rest of life. And so you're giving that permission to say, once a week we need to talk about this, but the rest of the week I want to find out about how you're doing with boyfriends, girlfriends, school, work, you name it. And suddenly that gets everybody off eggshells, thinking they have to talk about cancer all the time, and it gives permission to talk about life and to talk about all the fun stuff and all the good stuff. Also sets − hey it's very serious, we need to talk about it at this set time, but if something big comes up, or if you have any questions, we can always come between those set times, we can always ask about it, but we'll always have that one time, once a week or once a month.
Julie: But what if your child just says, I'm not going to talk about it. They get up, they walk out the door and they slam it.
John: Sometimes they just need to walk away. And that's where I would come back to that young person and say, “I know it's difficult for you to hear this and you don't want to talk about it, but we need to find the time, you and me, let's find what's comfortable, because we have to talk about it. What about once a month? How about we start with once a month and that's it? If we need more time than that, we can renegotiate. It's hard for you, it's hard for me. We're in this together. It's hard for your brothers and sisters, it's hard for Mum, it's hard for Dad”, and say, “It's hard for all of us, but what we know and what will be easier for me as your parent is to know that you know the facts that you need to know and that we can help get through this together, even if it's just once a week or once a month.” And I haven't seen that fail yet, even with the most difficult of children.
Julie: Some parents listening to this will be single parents. They face particular challenges, don't they? What are your thoughts on what they can draw on for help?
John: Call in the cavalry if you need it. A lot of people, even though we have a wonderful health system, a lot of people don't know that they have full access to a multidisciplinary team. And if you have only talked to a medical oncologist or a surgeon or maybe one of the nurses, they may not have told you that, hey you can talk to a social work, hey you can talk to a clinical psychologist as part of your treatment team. Know that that is there for you, it's a right of an Australian citizen in this country having treatment for cancer. So, those things are available through your treatment hospital and through your local area health services.
Julie: My last two areas I guess go to if you have a child, whatever age, what are the signs to watch out for that they're struggling and then how can we help that child to cope? Particularly if the parent is going through a tough time with side effects and is inevitably not quite as available as they would normally be. So first of all that, signs that something is wrong, what do you look for at different ages?
John: Pretty much across the board, no matter the age, it's really understanding what was your child like “before cancer”. Are you noticing any differences? So any big trigger for any aged child, is are you noticing sleeping pattern changes, are there any disturbances there? How are they eating − are there changes there? What about concentration at school? Are you hearing back from the school that your child is falling asleep in school when they're normally a very attentive student? Grades are starting to slip, or they're hyper-focusing on grades and grades are getting better. So it's normally: where is the change? Do you see a change? And even if it's a little change, but if you're noticing things, particularly around sleeping or eating, I'd be contacting a health professional and say, I'm noticing this, do you have any strategies, what might we be looking for here. Those are normally pretty good indicators across all the child age ranges.
Julie: I've heard that it can be helpful to ask a child to identify five trusted adults. Can you explain what's that about, how does that help a child?
John: Well, one, they're not alone and you're building that community of support around them. So, knowing where to go to, even if one of those adults is KidsHelpline or something like that to say − if you have a question you can always call KidsHelpline or you can always call Lifeline, but KidsHelpline is probably the most appropriate for this age range. But having those trusted adults within that circle of friends, and what I like to do with families is say if you can in an ideal world talk with all the important adults in your community, let them know what you're saying, how you're saying it, because having a consistency of message can be really helpful.
Julie: You mentioned KidsHelpline, their number is 1800 55 1800 and we've put that number and a link to their website on our podcast page at cancercouncil.com.au/podcasts − just visit that page and go to this episode. And you can also find links there to two Cancer Council resources that will especially interest parents: Cancer in the School Community, which explains how school staff can support your children, and also Talking to Kids About Cancer − these are great written resources. John, I guess the key ideas we've heard from you are: it's a sequence of conversations, there's no secrets, we're in this together, and I'm going to keep you posted as we learn together. Is it all about communication with kids?
John: Yes, and I like to say when I work with a parent, say, look if you talk about a hundred times and you stuff up on five of them, you've had ninety-five times that it's been great. If you talk once, and if you stuff up on once, then that's a hundred per cent when it's not going well. So, cancer is a process, more and more becoming a chronic disease, so dealing with each of the nuances, the different layers of treatment − so you have diagnosis, there's a communication, that's where you have to start it, but then you start treatment, then you might have surgery, then you might have radiotherapy, then you might have a little bit of time off, then you might need more chemotherapy, so at each of those significant transition points and treatment, that's where you are, it's really important to reopen that conversation, say, “Just need to let you know, we're at the next stage here. This is going to be a process as we go through and any time that we hit a significant milestone I'll make sure I fill you in.”
Suzanne: I was really afraid that it was going to frighten them. I was really afraid of them being scared that they were going to lose their mother, because I was scared of that, of them losing their mother. But they weren't scared of that. They, it's that, innocence is bliss, and they weren't thinking along those lines at all. So I think we can be guilty of imposing our fears on them when naturally they don't feel that fearfulness straightaway.
Julie: Did you find being open with your kids and seeing how they reacted actually put your mind at ease?
Suzanne: Definitely because during that initial period I didn't talk to them about it at all, didn't mention cancer and I held all of that within, and I did not realise how much that was creating stress for me until I started talking to them about it, and the relief that I felt after I started talking to them about it was enormous. And then you just exhale and you go, right it's all out in the open, let's get on with this.
Julie: That's it for this episode of The Thing About Cancer. Thanks to John and Suzanne 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 a review on iTunes or on our website. If you'd like to subscribe to the show, you can do it in Apple Podcasts or your favourite podcasting app.
If you found this episode helpful you might want to listen to our podcast on “Coping with a Cancer Diagnosis”. In that episode, I talk to psychologist Cath Adams. Here she is explaining how important it is to be kind to ourselves:
Cath: We all with respond differently, we just have to allow ourselves to have our response, that's the important thing.
Julie: Okay, so let yourself feel and give yourself some time.
Cath: Be as gentle with yourself as you would be with someone you care for. If it was your best friend telling you, if it was your child, be compassionate with yourself to that same degree. We are never that gentle with ourselves...
Julie: You can find that episode on our website at cancercouncil.com.au/podcast.
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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