This podcast contains the personal stories, opinions and experiences of its speakers, rather than those of Breast Cancer Now.

Today we're talking about parenting with cancer. Our guest is Caroline Leek, who founded Fruitfly Collective, which helps families to talk about cancer. Her own father died when she was 12 years old. 25 or so years later, when she had her own kids, it hit her that she had never really processed her father's death. So she set up Fruitfly Collective to really give parents the tools to talk about cancer, to talk about death and grief. I found this conversation so useful, so practical. If you're a parent listening to this podcast with cancer or you're perhaps the partner of someone with cancer and you have kids, step kids, blended family, whatever it may be, she gives some just absolutely brilliant tips. Caroline previously worked in research and she's clearly done so much research to inform Fruitfly Collective and the resources that they bring to families. So without further ado, I hope you enjoyed this conversation with the absolutely phenomenal Caroline Leek.

Caroline, thank you so much for joining us.

Thank you very much for having me.

So let's start by talking about Fruitfly Collective. Why did you set it up and what exactly do you do?

Well, what we do as an organisation is to support and empower parents diagnosed with cancer. So we do this by various methods. So one way could be coaching. So we do an eight-week coaching course. We provide resources and toolkits for families to learn and understand about what cancer is, as well as to understand the inevitable changes that happen within a family and emotional coping and different strategies and tools around that. We also support health care professionals and social care professionals into understanding the impact that parental cancer can have on a family. Because they don't receive any of that type of training. So we just do quite a light touch, of sort of allowing them to understand, you know, what their patients might be going through.

The reason why I set up Fruitfly Collective, because when I was 12, my dad was diagnosed with cancer and it was the 80s, cancer wasn't really spoken about. I mean, it's still not much now, but it was hugely stigmatised. And as a kid, I just didn't understand what it was. And so from diagnosis to death was only a couple of months. So I think halfway through my mum told me that he had cancer and then I was like, well, what's that? And I don't think she really knew what it was. And then, and I didn't realise how serious it was. And then he died. And then we are coping mechanism as a family was to just move somewhere else and then create a narrative and a story where I could go to a new school and pretend I didn't have a dad. And that as a coping mechanism worked very well.

Then obviously we all know that we can't run away from big feelings or grief. So that grief came up when I had my own children. And so when I was playing with my little kids and thinking how they learn and what they need from a parent and everything, I was thinking about what kind of what sort of, how do they learn and how as a family can we learn about different things they do at school? And then I was kind of perplexed at why, you know, at school they learn all the sciencey things which they need to know. They need to know about space and magnetism and all that stuff. But really, is there anything about when a parent or a loved one in their family is sick? Diabetes, do they understand that? Depression. And I kind of like started to look around and I've got a research background so I was sort of having a look to see what, and there was one book, know, Mummy's Got a Lump or something like that and I just thought, is that it? Is that it? That we have not moved on for, you know, 25 years or whatever.

So I started to sort of look around and see who I could kind of reach out to and I was really lucky that my sister was working in oncology as a pathologist and she got me in touch with a psycho-oncologist and I was like, I'm thinking of doing this thing where I create a toolkit that's quite creative and engaging and age-appropriate, for a family to actually learn about what cancer is and what it isn't and the side effects and the impact that family life has. And she was like, oh my god, yes, please, please, please. And then I had other champions at Maggie's. So Lesley, who's the principal clinical psychologist there, she was like, yes, do this. So I kind of got all the bits and pieces together and I was able to create something.

And then quickly it was like, okay, it's not just about cancer education. It's about all the other things. So it's about emotional coping, it’s about practical solutions to impart, about looking at all the changes that will happen when a family is faced with parental cancer.

Amazing. We'll talk a little bit about those toolkits and the various bits of advice that you can offer to people listening who perhaps have cancer and they also have children. But just going back to when you were 12 and your father died after a fairly short period, well a very short period of illness with cancer. You said that moving schools helped you to cope and not talking about it very much helped you to cope. How did it affect you at that time?

You see I can't really remember which is quite a classic thing when something traumatic happens you know you can either just remember it all or you remember nothing. I remember having this very big drive in me to succeed in something, but I wasn't too sure what it was. Very much a people pleaser, which I think really was actually looking out for my mum, because it was just me and my mum that moved away. My sisters were older, so they had gone off elsewhere. So I was probably quite hypervigilant around her, but not being able to be conscious of that. So I think I wanted to make sure that she was all right. And because we didn't talk about it and we didn't talk about feelings and children's feelings I don't think were really known until 20 years ago. So it was that we were living in these kind of like spheres but not really living together and not experiencing grief essentially together really. So she was probably looking out for me and I was looking out for her but as a young person you don't have those kind of, that mental sort of ability to really understand what was going on. So I think there was that, I think there was also a sense of you only live once. I think it's kind of, quite another common thing is when you have an adverse childhood experience is that some people think, right, you've got this time on this earth, let's just do it.

And so I did, I just threw myself into things. I had a brilliant life and I was able to deny what I'd gone through and experience until it slams you in the face. And for me, that was having my own children, which again is quite a common experience. And then I had to work through it, go, why am I feeling this? This is really bizarre. My dad died 25 years ago. What is going on? And so reading around, I sort of did my own kind of like therapy of just like listening to podcasts or listening to Griefcast was brilliant to see other people who had gone through similar experiences as myself thinking, oh, this is actually quite textbook. I was actually quite a textbook child. And thinking also of risky behaviors that I did in order to probably blunt all the feelings or so there was a lot going on and I wish somebody had pulled me to one side and go, right, are you okay? And I suppose I probably presented myself as being okay most of the time because that served my mum better. And I thought that's the way I should be. But really I didn't know what was going on. I didn't have any role models in how to, how do you grieve? How do you grieve at this age? My mum didn't look like she was grieving, so I just thought, I'll bottle that all up, put it in a nice little box, and I'll put it in my head, and then I'll leave it. And it worked for a while.

It's a really difficult age, 12, because you are on the cusp of being a teenager. You've mentioned quite a lot, wanting and needing to look out for your mum and to sort of put on a display of bravery for your mum's benefit, not to upset her more. So you're not quite a, you know, if you're eight years old, then that's, much more sort of in childhood, but 12, you're almost like on the cusp of going towards being a young adult, aren't you?

Absolutely, absolutely. And you've got these big emotions and you've got this…

Hormones as well.

Hormones you've got, you're just finding out who you are really. And then suddenly just be throwing this big thing at you. Just, you don't… and of course at that time as well, it wasn't really spoken about. And I think the environment now is so much better for young people and children. There's so much more talking about mental health, there's so much more like at school and stuff, you know. And yeah, I think you just sort of, I just dealt with it the way that I thought was appropriate, really.

Any support, a counsellor or a school teacher that you could confide in or anyone like that?

I remember going into school after I had a week off or something, just hoping that no one mentioned it. Just being like, please don't, really being anxious. And no one did. So I was like, oh, that's good. But actually looking back, that was rubbish, know what I mean? That was really rubbish that no teacher at all mentioned it or did anything or pulled me to one side saying, if you've got a moment where you feel overwhelmed, you can go here, you can do this. It was just silence. So I suppose that fed into my like, all right, we just shut up about this. Like this is the way that it's dealt with. So I'll just carry on as if nothing's happened.

And looking back now, what support do you wish you'd had? What would have been useful to you then?

Well, initial at diagnosis, to be given some information about what was going on with dad. Whether it was just general information about what cancer was or how it was going to impact what might happen. And then as his prognosis obviously deteriorated, understanding that he was going to die, so I could have said goodbye, so I could have done all those things because it was so quick. And I don't blame anyone, I don't blame my mum, I don't blame anyone at the time because it was a different time then. However, I would have liked to just have been empowered, been given information, understanding of what is likely to happen. And those conversations are hard, and this is what we talk about to parents all the time, they are hard, but children need to know that. They need to make their own decisions around what they want to do. And they can't do that if they are left in the dark.

What resources and kits and things do you have for families?

We do what's called the Cancer Cloud Kits. So they were our original kits. So they won awards, which validated basically that we were doing the right thing. So they were awarded by the British Medical Association. So that was really great because that got our name out there and then we were able to get more funding to do Pip’s Kits. So they are age appropriate. So there's Hedgehog Cloud Kit, which is three- to five-year-olds. It's very much around role play and feelings and that sort of stuff. And then there's the Tiger Cloud Kit, which is for like primary aged kids. And then there's the Cancer Cloud Kids, which is a little bit for, you know, early kind of secondary school. But they're all around the same thing. It's cancer education. And of course, every cancer diagnosis can be completely different, but we've just been quite generic, been about sort of side effects and then that sort of bring along empathy for your parent who may be experiencing these sort of side effects.

And then... practical tools, there's calendars, there's lots of different things, and then emotional tools like worry boxes and worry chatter boxes and all those other things. And then there's communication tools as well. So there might be for little ones, it might be just kind of like little play, role play. And for other ones, we've got a pack of cards that have got 52 questions around things that children want to know the answers to, which are quite self-centred, you know, who's going to take me to football? Who's going to cook me dinner? So they're questions that the child can look at and say to the adult, who's going take me to school? And there's answers on the back if the parent wants to go, because some of them are like, will you ever get better? So there's some prompts that the parents could use and we've colour coded them as well. So there's some purple ones that perhaps the parent might want to look at first of all. because they could be sick quite sensitive. So it's like, what will happen if you die? Those kind of questions.

But parents have said that they love playing games, card games with them because it suddenly normalises this conversation about cancer and where they're at as a family. Or sometimes they're just playing and then one card suddenly resonates or something comes up. Again, it's just a really nice way for a family to connect and then discuss if they wanted to a certain subject. It's brilliant because every child over a certain age, I'm pretty sure if you say you've got cancer, if the parent has cancer, the child is going to think in their head, are you gonna die? And they're gonna want to ask that, but they're not gonna be able to ask that. But putting a card in front of them that says, are you gonna die, allows them, gives them that permission to ask that question. And then you can answer. In each of the kits is a parent book. And in that parent book, we say, your kid is going to be thinking, just like you said, are you going to die? You can approach this any way… I mean, we'll do it in a bit more lighter touch, you can approach it any way you want to. Of course, they're your children. But just to know that that's probably what they're thinking. And actually, if you address it really vaguely or whatever, you know, whatever answer you want to have, to have something that's prepared. So often little ones will ask questions at really random times. When you're multitasking and you're putting the shopping away, there's something they go, are you going to die? And that can throw, you know, obviously. So you want to be able to perhaps have something planned in your head so you don't ignore it or you don't say something untrue. But yeah, and sometimes it's just something to say. Most people think that you die when you have cancer. This is not true for me or at the moment. We don't think this is going to happen. And often that's all it takes because it's like you've put it on the table. It's there on the table. They know that if they need to talk about it, they can.

So I'd like to ask you some kind of practical tips and questions that might help people who have a cancer diagnosis or know someone with a cancer diagnosis that are listening to this podcast. So we'll start with talking to kids about cancer. Is there a best practice in terms of initially breaking that news to a child? And obviously it depends completely on the child's age. So maybe you've got a few different examples of how we might do that.

Yeah. I think the key thing is preparation because if you suddenly go into a conversation and you're not prepared it feels very, very like a big unwieldy, scary, frightening thing. But if you've done a little bit of preparation beforehand then that can feel a lot grounded and you can feel a bit more in control. So we often advise, the first thing is a bit of a mindset shift. So it's like rather than thinking, oh my god I've got this massive really, really difficult conversation to have. I've got to get it right. We often say, if you can think of it like a jigsaw puzzle. So you only need to put down one little piece and be child led. So some kids might need three pieces, but really over time you can put down more and more pieces, the more learning or more understanding you have of what's happening or the more that the child needs to know. So actually that first little piece, feels like, okay, it doesn't have to be this massive thing. It can just be a series of little conversations and those conversations will have to continue for a long, time, just check-ins. So if you think of it, to begin with, as not this huge pressurised kind of conversation to have, then we often say, rehearse what you're going to say. So sometimes they say like three bullet points, get a piece of paper and write down what would you like to tell your children. It's often around what the doctor has said. Children really don't care whether you read it off a piece of paper. And again, that can really help a parent to feel in control because most parents don't want to get too emotional. So actually if they're reading something that can help them.

Another thing is to rehearse in the mirror or to your friend or to your partner because the more times you say I have cancer out loud the kind of easier it feels. So saying it out loud for the first time to your children can feel really, really frightening. So have those in place and have something that you really want to say and then have some kind of props can be really, really, really good. So props could be an app that you have on the phone. It could be even something like a Lego or Play-Doh or something like that. Or it could be a website for young people or whatever. The thing is that you're both kind of not staring at each other's eyes, so it's not like so confrontational. So if you've got something, it can often impart more information about what's happening or what's going to change or whatever. But also it could be something to fiddle with, something to keep your eyes, you know, to sort of looking away so it doesn't feel again this huge pressurised thing. So for little kids it can be really good to sort of be on their level, like sit with them at times and be on their level and teenagers sit on the sofa so you're not staring each other's eyes, be close, but like, you know, you don't have to be staring each other's because they feel that quite confrontational. Just allow a chunk of time where you're not gonna be interrupted.

And then plan for just to have low expectations. So little kids, you'll build yourself up to say this really difficult thing and then they'll go, all right, and they go off and play and you feel like, oh. But that's great, do you know what mean? It means to them, it's like, oh, all right, yeah, whatever. And it depends, the parent's gonna know their child best, how they're gonna react and how they're gonna respond. So if you do get emotional, absolutely fine. Try and say, try not to be too hysterical, because that can be just frightening to the child. But being emotional is great, because you're role modeling, actually sharing emotion is healthy. It's the right way to kind of do it. And it's a valid response to actually what is happening, because it is sad or whatever. And then... Just be guided by the child, really. That's kind of the key thing. So be age-appropriate. Doesn't matter if you get it wrong. They will tell you. But be age-appropriate in that how much information you give them. So sometimes parents of teenagers think because the teenager can understand more that they need all that information, but often teenagers don't want that. So they can become just as overwhelmed with too much information. So again, sort of give them a bit and if they want more, they will say more. If they don't, they will. And they often return, especially if a teenager, can be quite demoralizing if you've built this kind of, you know, going to build this conversation, difficult conversation, and then they meet you with silence. That can be really hard because you just, your head immediately goes, well, they don't care. And they do, they need time to process. They need to understand a bit more and they will often go away and come back with their questions.

So that's the first kind of conversations to have and just be prepared that you're going to have more conversations. So the little kids, we often say, if you can get them to repeat what you've said, that can really be great to mop up any gaps in their understanding or all the myths start to come out and you can dispel them. And often sometimes asking them straight away, what do you know about cancer, can be the most enlightening question that you've ever asked a child. Because I think we think that children don't absorb information about cancer and they do. So when we did our cancer education programs in primary school, we asked them, you know, what they think about cancer, what they think causes cancer. And it was hilarious, but also frightening. You're like, oh, right, these kids have got a lot of information that is incorrect already in their heads. Actually we often say to parents, if you ask that question, sometimes that's a good starter. And then also you can immediately go, nope, nope, nope, nope. And then allow them to ask questions that they want to know.

What sort of things were they saying that they think cancer is or is caused by?

Oh my word, anything to germs in pizza was one. Going to the toilet, being too close together, writing on your hand in ink, going out when you haven't got your coat on. I mean, you can see where all these kind of, and things like drug dealers, so anything that's, I think they've picked up that might be risky or something bad, they've just associated like attached cancer on that. So they already have those things in their heads.

And in the case of breast cancer, if they're asking what's caused it, and you're like, well, we don't really know. You know what? Is there an answer that you can give?

No, and that's fine because majority of people don't know. It's just something that's gone wrong in the body, we often, so in our tools as well, there's loads of different ways you can explain it. And it's often good to just talk about those conversations. Lots of children feel guilty if their parents smoke, for example, and then they feel that there's that anger around that. And actually just talking about it and then actually saying we don't know why Healthy lifestyles is one thing, but actually majority of a cancer is caused by just something going wrong in our body when our cells make cells. And so talking about it from a scientific point of view, like they could understand, because when we did our cancer education program, they understood the blocks of life, you know, and then we would do this thing where we would whisper an instruction into a kid's ear and they would whisper it into their neighbouring kid's ear, and over over and over to the end of the line, then they'd give the instruction and it'd be all gobbledygook. And that demonstrated actually when an instruction like the DNA gets copied one time, the more times it gets copied, the more likely some damage can happen. And they got that, they understood that, go, oh, okay. So then you could also say that's why most cancers occur in older people, because they've had more time for their cells to make copies of themselves. So if you reduce it down to something really quite basic, like, cells. They can get their understanding.

I suppose it's really important to emphasise that it's no one's fault.

Yes. Kids can blame themselves for stuff, can't they? They blame themselves because often also little kids’ only frame of reference is themselves. They are self-centred, so they can't understand why mummy's sad because she didn't pass her driving lessons or, you know, sorry, test or whatever. They can't relate. There must be something to do with me. So if they're not told about the cancer, they pick up on things, they sense the energy, they sense a change in something and they immediately will think, oh, it's something that I have done. So actually starting to talk to them and including them in what's happening will alleviate them.

And I guess that's also a good reason why not to hide it from your child because if they... sense that you're sad, anxious, stressed out and you haven't told them anything because you're trying to protect them from it then actually that could end up backfiring could it?

Oh absolutely, absolutely. Only yesterday I was talking to a parent who hadn't, they hadn't told their children because they were waiting for the next round of tests but those tests didn't come for six weeks so she was sat on this information for six weeks and she said that her child just knew knew immediately. She was 11, she knew the changes in the energy in the house. And she said she wishes she’d said it upfront, because then that would have been a lot easier to deal with, rather than this child just being really, really stressed and really anxious about something.

But then it's so hard to tell someone something when you don't have all the facts yourself. Like I didn't tell certain people when I was in the process of tests, because I don't want anyone to worry more than until I know what's going on, you know what mean? So I can imagine that's really, really difficult.

I think so. And I think we never obviously pressurise any parent to do anything at all. But we try and say when you're ready and you might not have all those answers, but actually telling your child that you don't know those answers yet is absolutely fine. That can make them go, oh, all right. So often we always say, try and... say that you will always be updated. So they can park that, so they can go to school, they can go to play, they can go and have a laugh, and they know that they don't have to constantly worry about their parents, so they know that their parents are going to inform them. They know that if there's been an update or the test has come back and it's shown this, they will get that information. They don't have to hunt for it, they don't have to constantly be sort of more hyper-vigilant on whether something's happened, something, a change has happened they can feel in the house. Yeah, so updating them. I totally understand why you wouldn't want the full picture, but sometimes you don't have that full picture.

What about using the word cancer? Should we always use it even if it's like a three-year-old?

Yes, yes. So do you have any children in your life, any sort of four-year-olds or they kind of basically if you said Diplodocus or you took them to the science museum, they would be all over that. So it's just a word and it's not a complex word actually, is it, to say and it's just what we've kind of loaded onto it. So children don't have that fear associated with cancer. They're gonna hear it and they'll, if they're old enough, they'll probably read it. We have had so many parents that said that their child found out through rooting around in their parent’s bag to find something and found a letter or found a prescription or something. And actually that's how they found out. So, or they've been told that mummy's sick or they've got a lump or something like that but not actually use the word cancer. So when they've seen it on the piece of paper, they're like, oh, why didn't they use that word? Is there something that I'm not being told? There might be a level of distrust to start. So if you're upfront and honest and clear from the beginning, you don't have to worry about... pretending or making sure that you're still using the same language, everyone's on the same boat and they will probably hear it from listening to adult conversations or something like that. So that sort of kind of eliminates all that confusion and that potential distrust that they might have.

How do you talk to a child who simply won't talk about cancer? They won't engage, they won't acknowledge this conversation and they just shut down every time you try and talk about it

Yeah, we get this question quite a bit. I think firstly to try and think of the child's perspective is that it's not that they don't want to engage, it's that they can't at that moment. So they can't at that moment because maybe they're in too much pain, it's too painful to think about it. Maybe it could be that they don't understand, so sometimes it's just a way of finding a different resource in a different format and trying again to give that information. But we get, I don't want to be, don't genderise, but mainly it's boys that we hear, that boys do not want to communicate. And that's a whole other podcast. But in times like that, we often say to parents, don't force anything because that's just irritating and that's not gonna get you anywhere. Sometimes opening up how you feel can start. Don't expect miracles overnight at all. But if you start modelling, I feel like this today or I'm really anxious today because I've got this scan result coming up. Just leave it there. Don't expect them to follow through or whatever. But they might start to learn that we can start to talk about feelings and that might crop up.

Then there's other kind of practical things that can do. So parents have said that they've managed suddenly a kid suddenly who has been silent for forever has opened up through doing activities together. So you're not sitting down, you're not pressurising. So if you can game, I can't, but if you are able to game with your kid who likes to game, having that and then sometimes that suddenly opens up conversation. Don't force it, don't expect it. Sometimes it can naturally and organically come out. Same as driving. So it's the sort of same principle, basically. You're both staring in the same direction. So going out for a drive, sometimes that can be good and not expecting anything, starting it because they can sense when you start to say, I'm about to have a big conversation, they pull back. So sometimes we've had parents say, we go through the swear tunnel. What's that? And so the kids are boundaried at home, not allowed to swear. But actually, if they feel that the kid would like to, they go, should we go to the swear tunnel? And they can wind down their windows. “Wind” down the windows? They can press a button, get the windows down. And they can scream and shout, swear, say all filthy words out. But once they're through the tunnel, then the windows goes up and then actually, you know, back to normality. And sometimes that can release them into thinking, oh, I'm okay to be able to show my emotions. I'm okay to talk about it.

It's also the idea that they might not want to talk to their parent because they might feel they're going to burden their parent. They might feel like their parent has got too much stuff on at the moment. Why do they need my... you know, kind of thoughts and feelings around them. So we often say to parents, they might be talking to somebody else. So that's always a good thing. And if they feel that they're not giving them permission to do that can be really great. Go, you know, I know you don't want to talk to me about it. And that is absolutely fine. But we think that maybe you talk to somebody about it because there's big changes going on. You've got big feelings that you're not showing or whatever. Then maybe naming a few people, but not putting it in their head or suggesting a few people or suggesting maybe somebody at school.

Sometimes as well, people might respond a bit better to a text message or an email or something, you know, just maybe you've tried to have that conversation. They've not really opened up to you, but maybe you text them later on and just say, I know you find this really difficult to talk about. Sometimes I do too. If you have any questions, feel free to ask me via text if it's any easier for you or something like that.

Absolutely, yeah, giving them all different types of options how to communicate. And sometimes we say about, it might not be the information, it might be just the connection that they need to get. So designing an emoji, not designing, but a language around it, or just expecting, have a very low expectation. So if you get an emoji back, then brilliant, you've made that connection, your kid is there. But yeah, trying to be prepared for different ways to... to do it and to know that 11 o'clock in the morning might be one way you communicate, by five o'clock in the evening, you know, it's a different way, they won't want to talk to you. They might be, and friends are really, really important source of support for them, so they might be talking to their friends about it and try to encourage them to do that.

What about if, so let's say you're the person with cancer, but your partner finds it really hard to talk about cancer, the illness, the treatment, everything else. Do you help with ways to, for adults to talk to adults about talking? Because that all then has the knock on effect on the child if there's one parent who also can't talk about it.

Yeah. Again, this is quite another sort of a big topic. Well if they come on the coaching course and you learn about healthy parenting and healthy parenting relationships, that might be your in-laws, it might be your own parents or whatever, but trying to be consistent for the child and trying to show up in the same way, using the same language and using the same level of information that they're going to use. It's really, really challenging if one parent is vehement that they don't want to talk to their children or don't think that children need to know or should know. versus the other parent when they think it should be open. It's trying to find, it's trying to work out between the adults before they get the child involved. So it's trying to give the tools to the parent that doesn't want to talk about it to understand why they don't want to. So you can give someone evidence, say that we know evidence, research shows that children that understand what's going on do much better, they have much better outcomes. However, sometimes someone's fixed in their own kind of thoughts, even bit of evidence won't sway them. So sometimes things like listening to kids or watching them or watching clips from different places to try and change their idea of how they're not going to be broken if you talk to the children about cancer. They're going to be open. They don't need to hide anything. It's trying to change that mindset. So sometimes it's bringing in resources. Again, that doesn't look scared because it's basically made of fear really and that's what everyone has. Everyone has this innate fear and actually it's how to sort of manage that other person's fear to where they can come to where you have a unified front where you can talk openly to the children.

One of the things that I know really affects children is hair loss in adults. You know when the parent goes bald that can be really scary. I remember when I first had chemotherapy 13 years ago. My niece was really, really young and I didn't want to wear a wig most of the time. So for her hanging out with me when I was bald, much later on she said, oh, I really didn't like it when you were bald. And I think there are other associations because her grandmother sadly died from cancer when I was going through my primary breast cancer treatment. So she's got associations with, you go bald, you have cancer, you die. But I think also just from watching TV, a lot of children and adults associate hair loss with cancer and death. When actually, when you lose your hair, it's usually because you're having chemotherapy, which is potentially making you better. Have you got any advice on talking to kids about Mummy's gonna lose her hair. This is what it's gonna be like.

Yeah. It's about including them in right at the beginning. And this is for any physical changes as well, any changes that they can see. So that might be mentally, but also, so the hair loss, for example, if you can be upfront and before it happens and to say, give them an idea of why it's happening, because then they won't be confused. So exactly what you said, most people associate you have cancer, it's the cancer that causes the hair loss and it's not the treatment. So if you can give some description, again age appropriate, just say you know this medicine is really, really strong but it's going to do this and this and this, that doesn't mean that I'm getting worse because often that is associated with hair loss. And then if you can, allow them being a part of process.

So we've got this beautiful audio of this girl who whose mum sadly died but the way she talked about her mum is a completely different way compared to some of the other children that we recorded that weren't let in and didn't understand and they had quite a lot of anger and a lot of sort angst around that whereas she spoke about her mum with such kind of proud and sort of it was really beautiful listening but she shaved her with her dad, shaved her mum's hair. She said she was really proud to see her mum go to take her to school with no hair and all that sort of stuff. So I think it's dependent on the child, obviously, and teenagers sometimes can feel that embarrassment because it's like, oh, you're actually, you're sort of signalling what's happening in our family and I'd like to keep it in the family unit and not let anyone else know. Whereas younger kids, if they're a part of the process, then they can, they can really kind of feel empowered by the whole process.

And there are books and there are toys now aren't there? Haircare, what's it called? Remember the Cancer haircare?

Yes, yeah, yeah, yeah. And also you can bring that in as a play and that so it can be sort of, I don't want to say fun, but it's a sort of an element where you're making it a sort of almost a normalised thing that your family now is going through. And that goes for any changes as well. So. If you are gonna lose weight, put on weight, you're gonna change slightly, I don't know, whatever. To just give that information upfront can really help them understand what's going on.

We've talked a bit about talking to kids about cancer, but one of the things that happens when you are going through cancer treatment, particularly chemotherapy, radiotherapy, surgery, is that you might be completely lacking in energy, you might be not yourself, you might not have your usual energy levels, and being a parent is incredibly demanding. Does Fruitfly Collective offer any resources for helping parents with managing their kind of lifestyle and their childcare when they're going through cancer treatment?

Well, we do. So our coaching program, that is a strong element throughout the whole thing is how do you parent when you're living with cancer? So there's lots of tools and strategies that we have on the coaching. So that's completely free. So it's open up to anyone who can come along. But we also do parent tool shed days. So that's consolidating all those practical tools around trying to parent with low energy. And they're currently in Maggie's, but we're going across the UK there. And so, and then the tools within that on that day are on the website as well so they can download things. So we have a few things that we have like our energy battery kind of thing. So it's labelled one to five. So with your child again trying to include them every step. So when mummy is number one I can only do two minutes a day of chat. So after school come in have a little chat. That's all I can do when mummy is number two. I can do a jigsaw puzzle with you, and then they rate it how their energy is feeling. The child can manage their expectation. They know if mum says, right, I'm a number four today, they know like put the wheelies on, go to the park, whatever. Whereas if they are a number one, they know that, all right, mum's sort of out of action. I can still ask her, because they probably still will, can you take me to football or whatever. But actually they kind of consciously know that mum's and that's a really easy way. And so many parents have used that stuck it in the fridge and it's still there and they just shout I'm a one or whatever. And everyone in whole family knows where they're at.

Other ways is that we have loads of different tools. So if you download a book called The Art of Parenting from the Sofa and on there are tons and tons of different ways that you can still connect with your child but from the sofa. So they come from loads of different parents that have given suggestions and they're amazing. And it's like from, if you've got a kid that likes to do role play, can you be the cat? Because you're curled up on the sofa and they can pet you. Or you can, if you've got that tiny bit creatively still in your head, you can say, go and find me five things from the house that are colour blue, you know, that small or whatever. Or put those things in place.

And sometimes we were like, asking for help is a big thing in our culture, I think. Asking for help is something that seems to be something that's showing your vulnerability and that's not applaudable, but actually when you're feeling strong or get somebody else to do it, it's like, who can you allocate tasks to? So it's World Book Day, you can't be bothered with that. I mean, that's so low on your priority, but actually it's high on your kids' priority list. So can your sister-in-law get a costume or whatever? And to get your army and your village around you to be able to do that. And we often say, so this is part of the coaching course, we say, how does it feel to support somebody else? When somebody reaches out to you and asks for your help, how does it feel? And everyone obviously goes, oh, it's brilliant, I love it, you know, it really makes me feel positive. And you're like, well, could you switcheroo it? Could you turn it around? They're like, oh, right, yeah. Could you give those friends and family that opportunity to feel that as well? And then, oh, okay. And that sort of reframes it. So trying to put those in place when you have moments of strength, mental strength to go, okay. Often you have to put the admin in, but once you put the admin in, then that can be really good. So you know you've got these tasks. And again, we have on the website a whole list of tasks to think about and allocate to your friends and family.

Yeah. And obviously it depends on the age and everything else. I think kids really love to be to feel important and to feel like they're helping. My 12 year old stepdaughter likes to make a cup of tea now. So it's great to know, can, can utilise that. And yeah, it might be to have a friend who has a daughter who used to love cleaning the kitchen with her. And also if you give them a pack of wipes, they love a wipe. They love wiping down the surface, it’s great.

And it's also really important because no matter what age the kids and generally the older ones, they want to help but they often feel bit powerless and a bit helpless because they don't really know. So if you actually give them tasks to do, then they can feel really good and they feel included and trusted valued member of the family. They're like, oh, this is my job. We often say with, especially with teenagers, because they could do more, check in with them. So they might like these tasks. Then a week later, it might have impacted a little bit on their school life, social life or something like that. And you don't want to overburden them. So actually have those check-ins that go, are you still all right doing dinner on a Thursday or whatever, or looking after younger kids, those kinds of things.

I heard you on another podcast, I think it was Liz O’Riordan's podcast, talking about a box, having a box with a child where you put lots of different things in. Do you want to explain that one?

So a moment when you're feeling a little bit more energised or again, allocate a friend or partner or whatever to do, but get a box and it's a special box. So they're not allowed to go in the box apart from the times when you need to, you know, lay on the sofa and do nothing. So then they can, it's a surprise and it's kind of like something exciting to look forward to. But you can put it in the box, can put it depending obviously on the age of the child. You could put some sticker activities. You could put some snacks. In there you could put colouring, could do Lego sets, could do, little kind of, you know, things that they can make, crafty things and all those, or books or something like that.

Or if it's an older kid, like makeup or sometimes like moisturiser or hand cream or something, give you a little hand massage.

Yes, all those things. And tap into what your child likes. And that's a special box that... is only allowed to be open in times of need basically. It's a bit like a first aid kit sort of thing. But that works really well and it's really nice for an outside member of the family to create or a whole gang of friends to top up and make sure that it's always available and that can work. And the idea really behind it is that you can, the parent continue to have that connection with the child even if it's five minutes just sat on the bed and that's fine. And we often say as well, don't think that you've got to like carve out 30 minutes to spend undivided time with your child. You're like, no, you can set a timer for two minutes and you can say to your child, once the time is gone, I'm going to have to go back to sleep. And they'll be, once they learn that, then that's fine. Because I don't know whether anyone's done role play when you're feeling energised, when you've got all your energy, it can be quite dull because it can go on forever. So actually, if you put your boundaries around the time. You yourself can feel a little bit at ease, but also they get to understand that, okay, we're just gonna have that two minute time.

I love the idea of the box as well. It works even if you're not going through cancer treatment. It's just a general great parenting tip, I think, that sort of a magic box is, it is. And they can make the box. That can be a task in itself to decorate the box.

Absolutely.

A lot of people will be going through cancer as single or solo parents. So there might be areas, difficult areas where they have to rely on the child for a little bit of support. For example, if there's some kind of, like if a parent needs to give an emergency number to the child to say, look, know, if I ever, if I fall, for example, this is the number that you might have to call. Are there ways to prepare children for difficult eventualities or emergencies without scaring the life out of them?

Planning for an emergency is really good to be able to talk to them when there isn't an emergency, there isn't a crisis. So if you can pre-plan that. And just to be quite straight and honest, this might happen. And when this happens, do this. I think being clear around what they need to do and the fact that their support for them and then after those conversations to make sure that they have their support and make sure that those communication continues. So ask them how they feel about having that responsibility. Ask them how, what they need to do to be able to carry out the tasks that they're going to do. What would help them? And it might be like, can I get a McDonald's afterwards? And you're like, yes, you can have a McDonald's afterwards. But it's about not assuming what they... can or can't do, or not assuming how they're gonna feel around the event.

Yeah. We've talked quite a lot about support for children, but if a parent is giving all of their energy to their children and supporting their children, how do they look after themselves? Do you have any thoughts on how a parent can kind of make sure they give that time for their own mental health?

So we have a big part of the coaching courses about self-care at the beginning and we give, really ask them to make intentions of what they're going to do, giving boundaries around that. It's like, doesn't have to be a spa day. Doesn't have to be, you know, whatever. It could just be staring out of the window for five minutes. And the charity that we work with, The Parent Village, has this brilliant kind of video on their website and it's about filling the jugs. And it's a visual thing where the jug gets empty the more times a kid wants a snack, a kid wants to go to school or all that, until you're left with nothing. And lots of people wake up without their jug being full anyway. So it's like, how can you give to your children? How can you turn up and show up to be the best parent that you can be if you've got no energy whatsoever for yourself? So try to sort of take that sting out of like, I'm being selfish because you're actually not, you need to be mentally all right or have some kind of energy for your children. So you need to do that by having a bit self care. So we get the parents say what you're to do and some people just go, I'm going to take my shoes off and I'm going to stand in the garden and just feel the grass. And that was enough for that person just to get through that day or that morning or whatever. Other people went, you know, more exercise or something like that, but it can be really tiny and just think of it like that rather than think of it's got to be a massive thing.

And then another sort of part of the coaching course ends sort of on self-compassion. It's like, how do you talk to yourself? How do you talk to, what's your inner critic saying to you and how you can basically, you know, tell it to be quiet or something like that. So it's about like knowing that you're enough, knowing that, yeah, you didn't ask to have cancer and you didn't ask for cancer to disrupt the family and you wouldn't want this and you've now got to parent a different way. But actually that's okay. And actually if your kid, watches four hours of Peppa Pig, that's okay. If your kid eats chicken nuggets four times a week, that's okay. So get through what you've gotta get through. You are good enough. And actually all your kid wants is your love.

Yeah. It's funny because every single one of my girlfriends who are parents, know, that it's always, there's always that thing of like, you can never do everything. You can never be the parent that you want to be. You always feel like you are putting too much energy into one thing and not enough into the other. So whether it's you're working, but you're not spending enough time with your children or you're spending more time with your children. So you're not able to do your job well enough. We can never do all of these things. And if you add cancer into the mix, then there is of course going to be that self-punishment of I'm not managing to do all of the things. I'm not managing to my job. I'm not managing to do the housework. I'm not managing to look after the children. And you do have to stop and say to yourself, I am going through something seismic here. I have to prioritise me. I have to look after myself. I need that sleep. It's really hard, but I've learned that very much over the years that I've got to say, you know what? My husband is capable of getting up at 6.30 to take his daughter to school. It's okay if I lie in until 8am.

Absolutely. We have this game on our website as well that people can download. But it's sort of like getting the family together and it's like, are your, what's your priorities? You know, do you need to go to football? Do you, so some, like a lot of parents say, oh my, all those sports, all the extracurricular stuff that my kid can no longer do anything. Sometimes we say, think maybe your kid would actually enjoy not doing all of those things. But sometimes getting the family together and go, what really do you want to do? What's your top list? And everyone comes together and we all say, they're like, OK, there's going to have to be changes. So what in your list could you change? And just working together. And sometimes you can't change something. Sometimes you cannot take this person, your kid, to football or whatever. They're going to try and get somebody else to do it. But if that doesn't work, then that's something. So they, again, it's all about everyone managing their expectations. But sometimes they’re also highlighting like, oh, you didn't really want to do that in the first place. So as a parent, some people forget to talk to our children and we continue and we continue to sort of think that they want to continue to do these things or we have these expectations. Well, you've got to do forest school because that's, you know, the only way you're going to learn about nature. And actually it's not true. And really, if you boil it down to sort of like the basic, again, they just generally want to spend time with you.

I recently went to a charity in Australia where they were saying they used to do camps. So they do amazing camps for families when the parent has cancer. They pay for them to go away and there's all these amazing things, then they learn, especially from COVID, and actually what the kids wanted was just to have connections with their parents. They didn't want this big thing. They just literally wanted to spend time with them. So they've re-evaluated how they, what support they give. And again, it just boils down to the just wanting to spend time.

I'd like to finish with the question we're asking everyone on this podcast. Breast Cancer Now's vision is that by 2050, everyone diagnosed with breast cancer will not only live, but be supported to live well. What does it mean to you to live well?

That's a big old question. For me personally to live well is to be, have good relationships with all the people I love and to be accepting of all my failures or my areas where I think I could have done better. Yeah, I think that's it, is that okay?

That's okay.

Yeah, that's a big old question.

Everything's okay.

Yeah.

It's a really difficult question to answer actually when you start to think about it.

Where can people find out more about Fruitfly Collective?

If you go to www.fruitflycollective.com, you can find everything there. So if you are a parent, you can self-refer to the free coaching programs that I've been talking about. You can sign up to the one day workshops that we can do. We are developing lots of new things. We just got a lovely award for five years of funding. So we're going to be looking at sort of more targeted parenting communities and how to support them. So that's parents with neurodivergent children, that's single parents, that's parents with incurable cancer, that's parents from a global majority family background and another one. Oh, we're looking also into how to support parents that are the surviving parent. So we're doing research around that. So over the next few years, we'll be developing courses and things like that. So if you go on there, there's tons and tons of resources, loads of stuff you can download for free, loads of different amazing stuff from different charities around the world that we pull together. So there's a great app if you haven't started talking to your children about cancer yet. I definitely advise you to go and see the Kids Guide to Cancer app there, all free. Download that, have a look, have an explore. There's lots of videos on there from workshops that we've done with experts on different topics, so dealing with pre-bereavement and all of that. So go and have an explore. And if there's something that's really missing, please get in touch with us and we'll see what we can do to fill that need.

And obviously we'll put all those links in the show notes as well so that people can find the right resources. I just wanted to say thank you so much for all that you're doing. Like this is such incredibly useful work that you're doing. Like it's so, so, so needed in the cancer community and beyond. So thank you so much.

Thank you.

And thank you for coming on the podcast.

Thank you for having me. It's been great.

We also spoke to Caroline about talking to children about death and grief. That will be coming up in an episode soon.

You can follow Breast Cancer Now on social media at Breast Cancer Now. All the links mentioned in this episode are listed in the show notes in your podcast app. Thank you for listening to the Breast Cancer Now podcast.