Telling your children you have cancer
Telling your child you have cancer is not an easy thing to do. When do you tell them? How much do they need to know? If you have young children is it easier to not tell them at all? On this episode, Kellie Curtain speaks with breast cancer survivor and mum-of-two Anita Ledger and John Freidsam from CanTeen about starting the conversation, dealing with a child in denial and the importance of keeping the lines of communication open no matter your child's age.
- BCNA's My Journey Online Tool
- BCNA Online Network
- Telling your children (bcna.org.au)
- My parent has cancer - support and information (CanTeen.org.au)
- Dealing with your parents cancer (CanTeen fact sheet)
- Parenting Through Cancer (CanTeen booklet)
- CanTeen Connect for Parents
- Medikidz comic book (early breast cancer)
- Medikidz comic book (metastatic breast cancer)
Upfront About Breast Cancer is a production of Breast Cancer Network Australia. Our theme music is by the late Tara Simmons, and this episode is proudly brought to you by the Dry July Foundation.
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Kellie Curtain [00:00:03] Let's be upfront about telling our children that you have cancer. No matter what their age, a parent's natural instinct is to want to protect their child. Telling them you have cancer is not an easy thing to do. When do you tell them? How much do they need to know? If you have young children is it easier not to tell them? Joining us is John Friedsam from CanTeen Australia, an organization that is well-known as a support group for children living with cancer, but in fact CanTeen also provides support to adults with a cancer diagnosis and their children. John specializes in psycho-oncology and we'll share his thoughts on age-appropriate discussions and the importance of communication with your children. Anita Ledger also joins us. Anita was diagnosed with early breast cancer a year ago and she is going to take us through how she told her two children, the impact that it had on them and what worked for her family. Welcome to you both.
John Friedsam [00:00:56] Thank you it's a pleasure to be here.
Kellie Curtain [00:00:58] John, where does the conversation start?
John Friedsam [00:01:03] Well, at the beginning even though it's hard. You know if you try to put the lens on from a young person's perspective, from that very first time that you might have a little behavioural shift the very first time you get the diagnosis information ... the kids are like little barometers and even down to the youngest of ages they'll pick up something that's not quite right and so they'll start to wonder what it is if they don't know what it is. So the earlier the better. One of the hard parts is if a parents' feeling really overwhelmed at first, so trying to get support around "how do I break the ice with the kids?". I would definitely recommend that. So if you're feeling really overwhelmed, where do you call in the cavalry? Get some support. Talk to a social worker at the hospital, talk to the nurse, give CanTeen a call, Call Cancer Council Helpline. Call the Breast Cancer Network Helpline to try to brainstorm strategies on how to let the children know. But if I could encourage everyone to say, look the earlier that we can try to get the communication there the easier it then is to continue the conversation.
Kellie Curtain [00:02:11] So is it a one-off event? Do we sit the children down - and we'll get to breaking down the age appropriate discussions - but do you sit them down and just tell them straight out? Do we deliver it in a soft sort of form?
John Friedsam [00:02:26] I've seen some guidance in the family communication literature around try not to sit down and have just the whole family at the table and have that type of discussion. It may be helpful to customize it to each of your kids. So if a parent were to ask me that question I would say first let's take a step back and let me let me understand your unique relationship with each of your children. What are your communication strengths with each of them? You might have a 17 year old that just grunts at you and you don't really talk about stuff. You could have a 12 year old that talks to you quite a bit. And so I'd be looking to harness what strengths do you have. Because even with the most non-communicative of adolescents there's some "in" generally. There's some "in". And so it's like let's look and see if we can build on that and there's a strength you have in that communication channel and let's find a way to introduce cancer through what works well for that child. And it might be different for all three of them or all two of them or if you have four kids it may be a different strategy for each. So I'd look to harness your own expertise.
Kellie Curtain [00:03:27] Anita, you have two children. They were 10 and 13 when you were diagnosed. Do you remember when you were first diagnosed was your first thought to how is this going to affect my children?
Anita Ledger [00:03:42] Yeah absolutely. I think everyone's cancer journey is very very different and your diagnosis and everything that sort of follows within that first 24 hours. Everything happened so quickly. I had a mammogram and ultrasound on a Tuesday afternoon and I came home and told my husband. I hadn't been diagnosed at that point but within an hour of coming home I'd mentioned to my husband that about the ultrasound. And then within half an hour I was called by my GP to come in and see her straight away. Unbeknownst to me my daughter had overheard us talking about an ultrasound and had gone upstairs and asked her brother what an ultrasound was. They Googled it together. She instantly thought that I was pregnant.
Kellie Curtain [00:04:37] A joyous occasion!
Anita Ledger [00:04:39] She got quite excited and my son happened to read on rather quickly and closed the phone down and just sort of said to her don't Google this again. He obviously had seen, you know, things about cancer.
Kellie Curtain [00:04:53] And he also had ... He's had experience with cancer.
Anita Ledger [00:04:56] And he's had experience. So his best mate's mum had has gone had been the past 3 years going through through breast cancer and he had, you know, seen the struggles of that and you know, what what she had been going through. So he went off to basketball practice that night and actually went to his mate and said "did your mum ever have an ultrasound?" And he connected it together straight away. So I actually wasn't in a situation of having to tell my children. He actually confronted me first.
Kellie Curtain [00:05:29] Which is, John, it's exactly what you just said about even before you've said something, when you decide that you're going to announce it so to speak ... they've already started picking up and you wouldn't have expected your daughter to have thought ultrasound and gone "let me go and ask my brother". So what's the message there?
Anita Ledger [00:05:53] This all happened to me very quickly. Like I had, my husband I had planned on telling the children straight away and we didn't wanna keep anything from them. But I think they before we could even put a plan in place had already figured something was was wrong.
John Friedsam [00:06:09] That's the power of Dr. Google. And that's the information age. I mean young people in school now it's as early as Grade 3 sometimes in Grade 2 they're getting assignments online. So the proficiency of using hand-held devices but also actually using search engines to search for stuff for school projects. They're starting to figure that out. So Dr. Google can find a lot of good stuff and it can also find a lot of bad stuff. So that that early communication pathway from parents is so important so that we can help them find the right information and information that is digestible. You know and age appropriate for them. It's amazing. Anita, when I'm hearing your story it reminds me several years ago when we were working on a project called "Talking to kids about cancer" project, I stumbled upon this book by accident by C.S. Lewis - Surprised by Joy - and it was like on page 17. And it was like two weeks before I was doing a presentation on it. And he was writing about his experience when he was 7 and it would have been in like 1906 or something like that. When he was a young lad and he had an older brother who was probably about 12 or 13. And he was describing the doctors coming to the house because the doctors came "the sinister whispered conversations" he heard through the wall. The all the comings and goings and nobody told them what it was but he just knew that his mother wasn't coming to him. And so he couldn't understand why she wasn't. He was worried. He knew something was wrong but he was really worried. But also he wanted to be coloured because he was worried and he explained it so beautifully. I mean that I always think of that "sinister whispered conversations" because the walls are only so thick that tell it when the telephone's ringing more and the walls are thin or the door is slightly ajar. And you think the kids can't hear you they hear you and then bang they're on their phone.
Kellie Curtain [00:08:03] You think you're talking in code.
Anita Ledger [00:08:05] Yeah yeah.
Kellie Curtain [00:08:07] In actual fact that they're picking up everything. So and like you were saying if you've got an adult you're thinking "protect the kids protect the kids I'm not going to worry them" but with hearing snippets they're likely to be making a situation a whole lot worse because they're only hearing bits and they're making their own sort of assumptions. So the message there is you can never not tell them. What about if you're not show going to show signs of, you know, visible side effects? So if you're having a lumpectomy and you don't need chemo, so to speak, where you're going to show, you know, hair loss. Can you ever get away with not telling?
John Friedsam [00:08:52] I would argue that the answer is no. Just because something will be different. There may be three weeks ... It might only be three weeks that you can't drive the soccer carpool, you can't pick up and drop off at school, or you can't do movie night or you're not sitting down and doing Netflix the way you've normally done. So there's going to be little behavioural changes. And so if if the kids are on the younger end they might be thinking "did I do something wrong? Or have I been naughty and I'm being punished?" Or they'll start to just conjure and think about "hey what's what's going on here? Why has this changed?" So there's whether we'd like to admit it or not when something big like cancer comes into our world even if it's early stage diagnosis and treatment looks like it's gonna go really well. The kids are gonna pick up on something and then in the case where the kids are a little bit older 9 and was it 13? Nine and 13 that that's Google age. So they'll probably hear some word or overhear a phone call when you're talking to your mum or your dad or your brother or sister on the phone they'll overhear something and they'll start Googling it. And so one one way we can try to help to inform them about how to adjust how to adjust to it is if they know how to adjust to it. And it's really clear in our research that young people just want to know the truth. So all the way from 12 to 25 They're like, "just tell me. Just tell me what it is.".
Kellie Curtain [00:10:17] So they can handle the truth?
John Friedsam [00:10:19] Yep. And they can handle it. And that's as a general rule of thumb. I mean there might be one out of a hundred kids are like "I don't want to know" but when we asked them anonymously in surveys they say "please tell me. Please tell me truthfully".
Kellie Curtain [00:10:35] Anita you made that decision to tell your kids the truth and to be upfront. Can you share with us why you decided that?
Anita Ledger [00:10:43] I think for the the reasons that John has said. They were so intuitive. They were going to pick up that something was wrong anyway. I wasn't sick. I had surgery. And the only time that I became sick was when I had to go through chemo. But yeah I just think that you know we just wanted to be open and honest with them.
Kellie Curtain [00:11:12] Was your decision to do that influenced by your son's friend's mum?
Anita Ledger [00:11:17] Yes. So I had contacted my friend ... my son's friend's mum the night that I was diagnosed. And just to get some immediate advice from someone because I didn't really know anyone else that had been through this. And her one ... she gave me two pieces of advice and one of them was just be open and honest with the kids. Because it was something that she hadn't done straight away when she was diagnosed and she found that her kids were going through her phone trying to find some answers to questions because I knew that something was wrong. So yeah. So it's really important for us to also be able to have the children talk to us about the experience that I was that I was going through and and you know we couldn't really comfort them in any way by telling them I was gonna be okay because we didn't ... You know you don't really know, but I think that we can just make my goal during this journey was to make them feel like everything was just normal. And I tried to be at every one of their activities and we just kept everything as normal as possible. I went to work you know. Of course during chemo there were days where I was pretty low and and unwell. But yeah we just we just kept moving through that and just tried to keep it all of our routines and everything at home and now it's pretty clear that they were fine with that. Because you know they were still annoying each other and behaving badly at home and you know they didn't make a pact together to go and pick up laundry and do the dishwasher so everything ran as normal as possible!
Kellie Curtain [00:12:55] We often call that "handing back the vacuum cleaner" when you know after that initial sort of flurry of, you know, sympathy and wanting to help. They're like, "yep here you go. He's your vacuum cleaner Mum" after you've finished active treatment.
Anita Ledger [00:13:07] And that was important for me. I didn't want them to be, you know, feeling sorry for me. We just had to to deal with it.
Kellie Curtain [00:13:15] John. It must be a parent's natural thing to say "it's gonna be fine. It's all gonna be fine." Even if it's not, or even if you don't know. Is that a mistake you don't want to make? Saying everything will be fine?
John Friedsam [00:13:30] Yeah I would look and everything might be fine but to to approach it as a process. It's really scary and that's a knee jerk reaction and that's just a very normal cultural phenomenon where we're going oh it'll be fine it'll be fine. And so how do we, you know... I would just try to explain factually what's happening. Depends on the age of the children it's is difficult when they're ... How do you explain something to a very little one as opposed in our age demographic of 12 to 25 and it's even slightly I'd even kind of morph it a little bit more to the over-18s. But you know say "things look like they're going to go well. The prognosis is good. The doctors feel confident that they can they'll remove the cancer with a lumpectomy. I might have to have some follow up radiotherapy, I might have to have some follow up chemotherapy. But when we know the facts we'll let you know." And so that's a slightly different way of saying it'll be fine. But explaining to them you don't have to give them a Ph.D. dissertation on all things cancer. It's just. Okay. Yeah. Okay. You've been diagnosed? Yep. You're going to have the surgery? Yep. And you might have these treatments but you don't know that yet. And I'll come back to you on that. Great. Thank you. If you have any questions you can always ask me. You open a door to communication and away they go.
Kellie Curtain [00:14:53] Perhaps we can break it down briefly into some age appropriate tools. OK so perhaps the under-10s. What's the best way to approach? So we've already ruled out that you can't get away with not. You need to do something. Is it about taking them on a tour of the hospital? Do they need to know that? How much do they need to know?
John Friedsam [00:15:15] Depends on the approach you're going to have. So look overall I think trying to explain how it might impact their life. For under-10s it means that you're not going to do school drop off and pickup it can be helpful to understand why you're not going to be doing that. They might not understand ... Again you don't have to give them a full medical explanation of what cancer is and what tumours do and all of that thing. Some kids might be really curious about that and you can find books to help them do that. But just to explain that that you've been diagnosed with disease it's called cancer, this is what the doctors are thinking and we're in very good hands. So bringing confidence in the medical team. We're doing everything we can. And if you have a good prognosis to say the doctors are really confident we have a good prognosis. If the prognosis is poor that can be another conversation. But we'll cover that one later maybe. And then how it might impact them. So it's all about you know "I won't be able to drive to and from school".
Kellie Curtain [00:16:15] Or pick you up.
John Friedsam [00:16:16] Yeah. I can't pick you up from school I can't take you to sport. So just. And that's why. It's not because you've been naughty. It's not because of anything you've done it's just because with cancer it's going to change the way things are going.
Anita Ledger [00:16:29] Yeah. Yeah.
Kellie Curtain [00:16:31] What about the next age group? Cause they're far more, like we know, Google age. And they're more articulate and they can pick up on signs. And of course Anita your children fall into this age group. John what are some of... The do we alter the approach a little bit, say for the 10 to 17s?
John Friedsam [00:16:51] Look it's actually it's fairly similar. Again very narcissistic age range. How's it going to impact my life? Trying to trying to understand and empathize with the impact on your child's life. That can be a really nice tool for a parent to go, "I understand this is big for you". So some things that we often miss is acknowledging that it's difficult for the kids. I would really encourage that to come in for this age demographic. But also how it might impact our life. And but if they were curious if they're very curious around medical stuff. So my daughter's not very curious about medical stuff but my nieces and nephews ... I've one niece who's very curious about medical stuff and now she's in vet school. So I probably would've sat down with medical books with her because she would've been interested in that. So again it's going back and harnessing my own knowledge and expertise in my child and then trying to figure out how can I communicate this to them. Do they want to know more about the disease? Or do just a really short sharp quick quick explanation is all they need? Now as a general rule of thumb short and sharp in general is the way to start because the kids have to process it too. So you've had process and you've talked to the treatment teams you've had all of this stuff you've Googled it yourself. This might be the first time they're hearing it. So introduce it to them say "look it's a lot to take in. If you have any questions the door's always open and you can talk to me. And I would encourage you to come to me. I can be your port of call because if if you have a question and I don't know the answer I can ask my doctor and then we can work together on finding an answer."
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Kellie Curtain [00:18:49] Anita your two children handled the news and the ongoing process quite differently didn't they?
Anita Ledger [00:18:54] Yeah they did. So my my daughter was sort of nine going on ten at the time. I received the breast cancer My Journey Kit and in that kit comes a comic book that is based around superheroes fighting cancer and explains the whole what cancer is and and how it affects you. So she read that and sort of cast it aside and said "Oh I completely get it now and you're gonna be fine". Whereas ... That was sort of it. Just like we ... I offered to have the conversations with her and if she ever need to talk to me to do so. My son though he he wanted to ... He was more inquisitive. He wanted to understand. He wanted to sort of be there I think with me. He wanted to come to doctor's appointments, he wanted to come to the hospital the day I was having surgery ... All of these things. So yes I think they they just sort of handled it very very differently. It wasn't then until I had chemo and I lost my hair that my daughter sort of then started to struggle quite a bit and it was it was mostly physical appearance. I don't think it was that she thought that I was getting was more sick or you know something worse was happening because as soon as I put a scarf or beanie on she was absolutely fine. So for her it was more the physical appearance of me not you know not having any hair.
Kellie Curtain [00:20:22] And was that in public or was that at home too?
Anita Ledger [00:20:25] Well I would always have my head covered in public so she was absolutely fine with that. But if ever at home I didn't have any covering on my head and I went up to her room. She would instantly cover her eyes and just not want to to see that.
Kellie Curtain [00:20:39] Is that quite common John?
John Friedsam [00:20:41] I've heard that for many families. So anecdotally my experience tells me yeah. And I've also worked with a lot of families that because other children can see it and it's more common for dads to be bald than mums to be bald.
Anita Ledger [00:20:55] And my husband is bald by the way. And he has for her entire life.
John Friedsam [00:21:00] And so particularly in primary school children can get teased by their classmates. And so that's where I've worked with schools going how do we figure this out? This almost kind of feels like bullying's going on. One student's getting razzed because their mum doesn't have hair. But we know it's cause she has cancer. How. Help us to explain this to the children in our school environment. And so then that's where, something, I don't know if we'll get there, but involving the school. The school is on your team. So I don't want to. It would be remiss of me not to put that in here. Call you know they're part of that group that has your children 6, 7, 8 hours a day, however long they're in school. And they can ... They're in another set of eyes and ears to see if there are they sleeping or not eating? Has their concentration shifted? They can. They'll know if there's something going on with your kids. So I would ... If you feel up to it I would encourage you to have that discussion with the school and include them. And in addition to that, things can come up because if if your kid doesn't like that you're bald it could be that other kids might be giving them grief about it going "your mom's bald". You know that, because kids are kids. And so then trying to unpack that and then working with the school on helping because as soon as almost 99 out of 100 times as soon as we go into an education session around cancer and how that some treatments make hair fall out the children go "oh my God!" And then they support the children.
Kellie Curtain [00:22:29] So there is there is a way to flip it. It's it's so therefore it's about educating. So would that's been extend to say if you do a lot of ... With a sporting club. If you ... If you're playing you know you kids playing basketball or netball three or four times a week or football? So it's not that you want to broadcast it, but actually there is method in informing the people that have contact with your children?
John Friedsam [00:22:52] Particularly for that no matter what the age of your child try to think about life from their lens. From an under 10 year old, it may be the first time they're experiencing this, like why has this happened? Where a 17 year old may have experienced one of their ... Somebody else or a grandparent that's had cancer. So they may have seen somebody becoming bald because of treatment or they may have they had may have seen those impacts of treatment. And so try to think have my kids ever seen this before? If they haven't, how can I try to help explain this to them? So I often try to say oh let's just go let's put on their shoes for a minute and try to look from their lens and then once you can figure out their level of fluency then you can adjust what you say to them to pitch it to what they can understand and comprehend.
Kellie Curtain [00:23:38] So our next age group, which I think is really surprising, is what the 17 to 25s: on the cusp and into early adulthood. Evidence has shown that this actually is almost the most vulnerable or highly stressed group.
John Friedsam [00:23:55] And with our research with our 18 to 25s, they have up to six times the levels of the stress of reference data. So the Australian Institute of Health and Welfare they do a distress screening with average population every couple of years and we use the same screening tool called the K-10 and our young people that are over 18 are as much as six times more distressed as young people that don't have cancer in their lives. And that's a higher ratio because for the younger ones it can be up to three times... It's three to six. But there's a variance but the over 18s it's really high. And so having having that open and honest communication is also really important. And it's also something that health professionals often underestimate because we think that the older kids are going to adjust better. But the same things ... Looking for the parents to take the lead on opening communication. They're looking for the parents to help them model how to deal with these complex feelings they're feeling, they're looking for parents to take the lead on all of those really tricky things. Even the 24 year olds. So. So we have to try to find a way to include them. And it's even trickier when they don't live at home. So if you're 23 or 24 years old you might have to call them on the phone. Or what happens if they've moved to London? They've launched out on their post uni life and they've moved overseas. So a lot of that tension comes in for them because suddenly they're feeling like they have to be drawn back to the house to support younger siblings or support mum, support dad. And there's that tension that comes in in this emancipation age where they're launching into their own life and also being drawn back to family.
Kellie Curtain [00:25:40] It's really surprising because I think you would imagine that as they get past 21 that, well, they're adults. So therefore they can handle it and they're probably more informed. So it really is almost even more important to have those open lines of communications. You mentioned before that it's not an event: it is a process. What is the best way to stop it consuming your lives?
John Friedsam [00:26:11] The best trick that I've ever found for any parent and this goes for parents that are dealing with a really poor prognosis as well as an early stage disease. And I find that it helps. We were doing we were doing focus groups with with couples. This is years ago now, this is probably this is the better part of 20 years ago. And they're like "this was really helpful for me and my partner". Is coming up with ... I call it a communication contract. Come and come up with a contract that says "look it's important that we find time and we have to find time to talk about cancer". Now most parents when they think about talking to their kids particularly in the early stages are like "I kind of want to update them, make sure, I want to check in on make sure they're OK every day." And it's like let's pull back on that because what's really clear what the young people tell us is that "we need a break and we need time out". So how do we deal with the cancer and how do we also have time out from cancer? And so it's like what what's a great way to do that is say once a week, once a fortnight, once a month whatever it is for you and each of each of your children that unique relationship you have with them. So we'll check in on Sunday. Sunday is their special day for that kid, for that particular child that you have. So Sunday. We'll just have ... We don't have a huge conversation but I need to check in with you to see how you're going. I'll give you any updates about the cancer stuff if we have any updates. And you can ask me anything that you feel you need to ask me and the rest of the week what we'll do is we'll focus on everyday life stuff. So I'll check in with about school, Girl Guides, netball, whatever. Soccer practice, boyfriends, girlfriends, first job, university life, all of those things. We'll talk about that normal stuff. And so and that is that nice little break from cancer. So suddenly then everybody's not kind of stepping around on eggshells around the cancer all the time and thinking, "should I do cancer? Should we not talk about the cancer?" And so that takes it right out because you have a set time. And so it was something Anita mentioned earlier that around the structure that particularly as children get on the younger end, structure... There's real safety in the structure in parenting. So kids if they can predict something it helps them to get through it. So suddenly you're setting a time to say we will talk about it. And the caveat that I would put on that communication contract is to say look even though we have the one time set if anything comes up for you you can always ask me. And also if I get some big news or an update from the doctor or the treatment team I'll let you know in between. So we have that agreement that we can do that.
Kellie Curtain [00:28:45] So if there's anything urgent we'll address it straight away. Otherwise it's it's part of that process in the plan that they're moving forward.
John Friedsam [00:28:51] That's right.
Kellie Curtain [00:28:52] Just quickly what about a child that's in denial? No matter the age. That just doesn't want to speak about it doesn't want anyone else to know a little bit by that cover your hair Mum, I don't want people knowing or I don't want anyone to look at you... I don't want you to be different. I think ... Is that what denial is and how do you handle that?
John Friedsam [00:29:14] I would say denial is a nice river but it's just a little joke that we have the Nile River. So anyway that's... I'm a dag, what can I say. But the look even though they're in denial it's impacting them. So that's particularly ... I hear that a lot in non-communicative adolescents. What. Like, "I would just try to talk about this and they're not even listening or they're not picking up the room or they're not helping me" and in this real frustration that we have even when you're not sick and your kids are crying you know what I mean they're driving you absolutely up the wall, how do you try to figure out is this about the cancer or is this just a normal life stage for them? And but then how do I make sure they're okay? Because really what the essence of when you feel when what I've learned from parents is when they feel their children are in denial they're actually they're so worried about them because they want to know how they're going. And so that's where the communication contract also helps. And so look I know this isn't fun. Again acknowledge and normalize to your kids that you know it's not fun and you know it's hard for them. You know it's impacting their life. If you have an adolescent child where they're feeling like they want to go out they want to go out to movies they want to go out to the mall they want to go out drinking if they're over 18 and all of those kind of things. But they're also feeling like "I kind of feel bad to go out and have fun but mum's sick" and so giving them permission to do that, to say "look I still want you to go have fun I still want you to enjoy your friends I still want you to play sport. I need you to still and you know just live your life. And we'll check in about the cancer." But for that kid who's really resistant I say but I am I do want to make a contract with you. And I want to pick a time even though it's gonna be hard for you, it's gonna be hard for me. Let's pick a time where once a week we just have a quick check-in even if it's just five minutes. Because I love you and I need to find out that you're OK. And normally that works. Normally that really works. Even with the most resistant of kids.
Kellie Curtain [00:31:21] Anita, how did your kids overall handle the impact that it had on your family and how are they now?
Anita Ledger [00:31:27] Look I think for me it comes down to the awareness of cancer now and it's out there and everyone can ... You know the awareness is so great and so good and I think for my kids that helped them in being able to start a conversation: not just with my husband and I but with their own friendship groups. And I think they took comfort in being able to to talk to their own friends. Even my son through a friend who had gone through a similar situation. And m daughter through her friends at school that they were able to to talk about it. And even one school holidays my friend went to... My daughter sorry went to her friend's house and they set up a lemonade stall at the front of the house and just sold lemonade. And then when I would pick them up they told me they were going to donate the money to breast cancer like to research cancer research. And I think the the fantastic awareness that is around cancer now helps the kids to be able to have their own conversations amongst themselves. Because it's not it's not a taboo subject. It's it's something that you know I think they can talk about. And if you know they needed to come to us that we know that they know that they can and I'll be open and honest with them. Where I'm at with my journey now is I see my oncologist every three months. And that letter is on the fridge so the kids know that it's coming up. We'll we'll talk about it that day. They'll ask how it went and everything just goes along fine.
Kellie Curtain [00:33:10] John though that awareness can be a trigger for some though.
John Friedsam [00:33:14] It can. So in the breast cancer space of all the different types of cancers and all the different locations in the body. Breast cancer has the most presence. And so maybe even a bus shelter or when you're watching TV you're watching sport there's reminders all the time. Little reminders. So it's wonderful for awareness and it's and it's it's wonderful for getting the word out there and for women to be breast smart and all of those things. It's such an important ingredient for us, but it also puts an impetus on us and parenting through breast cancer that your kids, just as you are, are reminded a lot just by a little subtle things that you see all around more so than any other type of cancer. And that's something I found in my 20 years or so and working in cancer, is that wow this is a really unique space for families dealing with breast cancer and how do you bring that into the discussion? That time out that young people are looking for how do you help young people to find a way to have time out when they might be going on the bus shelter on their way to on the way to school and tere is a breast cancer advert? So it could be it's worthwhile to explore that with them.
Kellie Curtain [00:34:27] And CanTeen has now launched a wonderful resource for parents to be able to share tips and their concerns. Tell us about that.
John Friedsam [00:34:36] That's right. It's called Parent Connect. So we have a we have a CanTeen Connect for young people as well. So it's a totally separate space for parents because one of the things that we've learned over the years so we've always been an organization you know for young people and by young people because we even have young people on our board and which is something that makes the organization really special. And but three years ago the evidence is compelling enough to try to find a way to help parents. We've been ... Parents often come in like when a young person comes in particularly if they're under 20, mum or dad normally brings them in. At least for the first one or two times, to break that ice for them. And so we've always been supporting parents and what the parents are telling us and when we started asking them, they say look I really want I feel alone I need to talk to some other parents that get it like what's it like to parent through cancer. And I also want to be able to share strategies on what's worked and what hasn't worked. And so we built the platform and we've also worked with our social workers and counsellors and psychologists in all our teams across the country as well as our e-services to try to make it so that when a parent comes in and they're trying to figure out the really tricky stuff around communication the communication issues and this is just I think it's important to consider. I just want to mark here around the communication. So what we find is in the unmet need surveys for young people in each of the domains of unmet need there's family relationships and friendship and all of the different domains predictor of unmet need is poor family communication. So that's a thread through each of them. So we know that if we can help parents concentrate on that little piece of the pie ... It's only a little piece of the pie, but if we can help to ameliorate the distress around that. Because parents they report in in the studies, "one of my biggest challenge points is figuring out how do I tell my kids about this." So if we can help to take that away then they can worry about all the other stuff. And so we're just creating environment for parents to do it. Parents do share with each other. And then if you can't quite figure it out and you want to go through it with with one of our psychologists or counsellors or social workers we have that too.
Kellie Curtain [00:36:57] Thank you to John and Anita for being upfront about telling your children you have cancer. An episode made possible with thanks to Dry July. If you would like more information on how to communicate with your children about your cancer diagnosis. CanTeen Australia has some fantastic resources. And as John just mentioned it's also the new Parent Connect platform. The opinions of our guests are welcome but not necessarily shared by BCNA. If you have any individual concerns please contact a health professional. I'm Kellie Curtain. Thanks for being upfront with us.