Latest / Rad Chat / E212: Dr Caroline Leek - Fruitfly Collective and Parenting with Cancer
Transcript
- Jo McNamara Rad Chat Host (00:00) Hello everyone and welcome to Rad Chat, founded by me, Jo McNamara. Naman Julka-Anderson (00:04) And me, Naman Julka-Anderson. Rad Chat is a forward-thinking global knowledge hub where healthcare professionals can advance their expertise in therapeutic radiography and oncology. Unlike traditional academic resources, we blend real-world experience, expert insights, best practice, and patient perspectives. Jo McNamara Rad Chat Host (00:21) We make advanced knowledge engaging and accessible, supporting continuous learning and professional development without compromising patient care or your personal time by providing insights into both technical skills and career development, helping you to progress confidently in your field and shape your professional future. Naman Julka-Anderson (00:38) Just to let you know, our episodes may contain sensitive and difficult topics that you might find distressing or triggering. Please consider checking out another episode. Jo McNamara (00:48) So this episode is part of our education and workforce development series, where we're going to be hearing from our guest, Dr. Caroline Leek, about her personal experiences and the Firefly Collective. So welcome, Caroline. Really pleased to have you on Rad Chat. Dr. Caroline Leek (01:01) Hello, thank you for inviting me. Jo McNamara (01:04) So Caroline, tell us a little bit about who you are, what you do, why you're here on Rad Chat on a night where you should be having family time with your sisters. Dr. Caroline Leek (01:15) They can wait, they're making dinner. Yeah, my name's Caroline and I am the founder and the CEO of a charitable organisation called Fruitfly Collective. I live in London and I'm married and I have two fabulous teenagers, age 18 and 16. Jo McNamara (01:31) So tell us a little bit about kind of your career pathway. What kind of led you to what you currently do now? Dr. Caroline Leek (01:38) So I was a neuroscientist before and then I wanted to have babies and I realised that it wasn't really conducive to keeping cells alive and doing experiments as well as keeping children alive. So I then went into medical regulation that was a bit dull and boring. But after that, sorry, that phone, did you hear? That was the Naman Julka-Anderson (02:02) I like, is that university challenge? Is someone pressing a buzzer? Or is it the door? I wasn't sure what it was. I was like... Okay. How many sisters are Dr. Caroline Leek (02:08) My other sister has just arrived. Once she's in, she's out. Alright, that's it. That should be it. Naman Julka-Anderson (02:13) there? Dr. Caroline Leek (02:14) There's only two. They're both in now. Jo McNamara (02:17) I do love it though because Caroline introduced this Dr. Caroline Leek (02:18) That's too real! Jo McNamara (02:19) sister as the loud one. Naman Julka-Anderson (02:21) There you go, the buzzer. Was that the buzzer or was that her talking? Dr. Caroline Leek (02:24) right she's gone through now it should be all alright yeah okay sorry I shall I start again yeah So I used to be a neuroscientist and whilst I loved doing that and learning about and researching about neurodegeneration, neurodegenerative diseases, I realised that I wanted to have babies and so I couldn't keep cells alive and children alive at the same time. So I went into medical regulation for the working for the MHRA, which was fine. And civil service, you know, it's kind of pays a wage and it's stable and you can bring up a family, but I found it was quite dull and boring. So I'd always done quite a lot of public engagement work and I was a STEM ambassador and I wanted to, I don't know, go in more into sort of creative education. I think that's where I started and then I don't know what I was doing or anything but I remember just sitting being quite bored with my toddler at the time and seeing some resources that we'd got out of a toy library and I thought about healthy eating and it had bits of information for the adult to learn about healthy eating but then it also had puppets and it had the hungry caterpillar book and all of this and it was a really good extensive kind of family resource and I thought why can't we apply that to parents' diseases and allow a family to understand, particularly the children, why their parents are this way or whatever. So I just started to do a little bit of research around it and realised there was nothing out there and I thought maybe I could do something like this. And that's where it kind of started from really, just looking at resources that were available. And I just thought, well, maybe I'll start with cancer because at the time I just thought well there must be something out there but I'll have a look and I was really surprised to see that there wasn't much at all and I thought from my own personal experience from when I was a kid up until I was I know had this idea around when I was just before I was 40 I thought you know there must be some resources that are available but there was there was a couple of books but they were a bit you know whatever so I was really stunned there wasn't anything out there to support a family when a parent's diagnosed with cancer, I thought, well, I'll have a go. So I found some funding and I just went away and I started to sort of build a little team around me. Naman Julka-Anderson (04:46) How did you find the funding? Dr. Caroline Leek (04:47) Well, I think having been a neuroscience in research where you constantly have to write grants to get funding to Naman Julka-Anderson (04:55) survive. Dr. Caroline Leek (04:55) survive, I knew how to write a grant. I knew that you need the rationale, the evidence. But we weren't anything. He was just me. So it was quite difficult as an individual. But there was this tiny little trust. that was giving away five grand if it was spent in a county in London, in a borough in London. And I think I happened to know somebody that was working in oncology in Guy's Hospital, which is in the borough that we had to this money on. And I sort of muted the idea to them and they were like, have a go. And I said, well, if I could build something, would you then be able to pilot in your small sort of And I think that's where it grew really. And they said, yeah. And then my sister, she's a pathologist in an oncology team at another London hospital and they were working with a psycho-oncology team and I sort of said could you ask to see whether this is something you know worth trying out and the answer was yes yes absolutely so we were kind of lucky where we could build something and then get it piloted to by professionals and then to their patients and then once we had that bit of evidence we could then you know feed that into the next grant and because it was always the lens of being really creative, we could get then funding from Arts Council. So it wasn't just health related. could sort of create little projects that other funding bodies that were sort of a bit different could come along and see. So again, just over time, we started to build and I mean, it was such a kitchen project, table project, whereas my kids were at primary school and I'd seen this woman design a fantastic birthday invitation card and I thought, what do you do? So I went up to her and she was a graphic designer. And I said, you're fancy doing this thing. And so she's still our graphic designer. And then I had another friend who was an artist and I was like, do you fancy like, if I give you some briefs, like doing some bits and pieces. And she used to be a mental health nurse. So when I said, can you just do me a drip stand or whatever, she'll be like, I know what you're talking about kind of thing. And she's still very much part of our group. So I think it was just finding those little key people and think, thinking, I think we have something here. And then of course, once the feedback from the families, as well as the healthcare professionals start coming through, you're like, okay, we're onto something, we're definitely gonna expand what we can do and how we can do it really. Jo McNamara (07:23) So a case of who you know as well as what you know. Dr. Caroline Leek (07:27) Absolutely and there's always you always find those amazing engaging people don't you that sort of they recognise it probably for their own personal experience or their professional experience where they found had difficult conversations with patients or whatever and they were like, and they just, they want to jump onto something that they know that's going to have such a positive impact and a wide impact. So yeah, we've just been brilliantly lucky and we hold them dearly and we nurture them when we make sure that they're very much part of co-designing of the new things and stuff like that. So they are valued sort of members because that's the best way of doing it, isn't it? Designing it with the people that are going to use it or implement it or whatever. Naman Julka-Anderson (08:04) I love the tool shed idea on your website. That's always really nice to see with the visuals and stuff and the ethos behind it guess, that when you're tired you can come and learn new things. Dr. Caroline Leek (08:13) Yeah. Jo McNamara (08:21) So Caroline, you mentioned a little bit about kind of your personal circumstances. How have your personal circumstances then influenced what you kind of do now? Dr. Caroline Leek (08:31) I think, so my dad died when I was 12, just before my 13th birthday of cancer and it was really short prognosis and so it was the 80s so no one really spoke about cancer, no one spoke to children about cancer, no one really validated children's feelings or asked them how they were feeling, the support just wasn't there so I think... That experience has shaped everything that I've done with Fruitfly Collective because I can still remember being that teenager. can still, and the way I cope with it was just think, well no one's talked to me so I must just bury this away and never speak about it again because no one else is speaking about it. And so my mum, me and my mum ended up moving to another part of the country. I went to a new school. I could be this new shiny person that never had a dad so I didn't have to ever talk about it. So, and that was a brilliant coping mechanism for me until I had my own babies and then something cracked and I thought what is going on? I just felt like it was really obvious now to know that you can't run away from a huge traumatic life experience grief. You have to process it. But at the time I didn't know what I was doing. So all of those memories and to be able to to be able to... do quite simple things to support families the way that I would have liked to have been supported really. So I mean I'm kind of writing a handbook at the moment for parents just to give some guidelines and stuff like that and I can see myself either as a parent or as a kid who's experienced parental cancer and throughout it all. So I think it's really, it's important and a part, lots of our work Fruitfly Collective is always done with people with lived experience. So if there is something that I quite, you know, so I wasn't tiny so I don't have that experience but actually we make sure that we engage with people that you know do have that experience and we engage with their kids as well and see how they feel about it. Naman Julka-Anderson (10:33) Engaging with the kids Caroline, does the language differ from teenagers to younger children that you might use around these sort of experiences? Dr. Caroline Leek (10:40) Yeah, I mean... Obviously everything's got to be age appropriate because either kids just won't understand it and we always say to parents start off quite you know sort of for younger kids even if you've got older kids because when you're stressed when kids are stressed then sometimes they might want to be overwhelmed or they might actually prefer a very simple explanation rather than too much information so we often say for parents who have got teenagers they might have the capacity to understand a lot more. But actually if you start off slow and then always be child-led, which is a real key thing. So if your kids are asking questions, means that they want either it means they want more information or it means that they quite haven't quite got it yet. And you might need to as a parent talk to them in a slightly different way or to use a slightly different type of format. So we, know, there's animations that are great. There's books, there's films and things like that. So teenagers, it's easier sometimes with the littler kids because they will ask questions often, whereas teenagers are often seen as quite difficult, hard to reach kind of closed group. So we say, you know, we always when we do parent chats and things like that, we always say that, you know, they need just as much support as the little ones, but it's the way that you provide that. So it's a slightly different way. And if they're not talking. They might not be talking to you. So that's always a good thing so give them, often give them permission that they can to talk to somebody But they generally, they will want to talk to somebody at some point. So being available and not being, giving them space. Because parents really find that always just, you just want to knock on their heads and go, what's going on inside? And with little ones, it's a lot easier to become that detector, detective and work out what's going on. Whereas the teenagers, it's often quite a more challenging but they still want to know that you want to support them. So we all say there's lots of different ways that you can potentially try sort of engage with and connect with your teenager after you've told them about your cancer diagnosis or during their treatment or whatever changes happen at home or whatever. And sometimes that doesn't have to be verbal. So I remember one parent telling us this brilliant kind of activity that she does with her teens. So she can tell when her teen is just really, you know, kind of uptight or stressed and anxious. So she's like, is it time to go for a drive? It's just like, yeah. So the drive is, so they get in the car and there's a piece of road that has a long tunnel. And once they get inside that tunnel, they can wind the windows down and they can scream out all expletives and swear words and whatever they want. And then once they're through their tunnel, that boundary time is over. They wind up the windows. And it means that, A, it's a bit of a laugh and they're kind of de-stressed, but also the kid has understood that the parent knows that they're going through a difficult tough time at the moment but nothing's been said about feelings, nothing's been said about cancer or changes or whatever and that really helps them to keep that connection and so looking for those little bits sometimes is just start small and just see meet where your kid is at regardless of their age really. Jo McNamara (13:42) That's really interesting because I have a 14 year old and some of our most in-depth discussions are in the car because you're not face to face with each other and it's almost like you're talking out loud but you don't have to Dr. Caroline Leek (13:55) Yes. Jo McNamara (13:56) look to see the reaction from each other. So yeah, I usually find out all the gossip Dr. Caroline Leek (13:58) Yes, absolutely. Jo McNamara (14:02) in those car drives where I'm like, so who's been vaping? Dr. Caroline Leek (14:08) Absolutely, absolutely. Or it's something, I mean, sometimes it's just being like, doing something together, you know, side by side, Jo McNamara (14:17) Yeah. Dr. Caroline Leek (14:17) obviously, but it's an activity. It's quite nice to if you can do something together, build something or whatever. But it's the same principle, it? I remember one boy said that he has difficult chats with his mum when they're doing the washing up and drying up because the same principle, they're both staring the same direction. Jo McNamara (14:34) That's really interesting. Caroline, from your perspective and liaising with the people that use your toolkits and use the website resources, what has the impact of the Fruitfly collective had on families? Dr. Caroline Leek (14:48) It sounds like I want to blow my own trumpet because it's quite hard in our culture to sort of take it, but it's been fantastic and it just, which lights the fire and the drive to continue to do more and to do better stuff or to get it out there more. But I remember the first bit of feedback that I got was from a clinical psychologist that was working at Maggie's and I don't even know how I got her involved, but I said, here's some kits. Could you use them and just tell me how it went. And I remember she emailed me and I was still working the MHRA and I still didn't know what I was doing. And I just opened up the email just sobbed because it said something about that she'd just been working with a 14 year old again another 14 year old who had was really struggling with their stepfather's diagnosis and the way that he was behaving and home life and was self harming and she said I pulled out the box we started going through the kit and she said within those moments the trust that was building between her and the you know and the kind of and the young person she said she could just feel it and then as they start going through the tools she's sort of opening up and actually talking about what was happening. I just went thinking my god something that came out in my brain like whilst I was you know on the floor with my toddler is now having an actual real impact in real life and so that was just amazing I just remember that just where I was and everything we're just thinking I can do this this is something that has to be done. We've had brilliant we've had photos from parents with the little toys that we have, their kids pretending to feed their toys and being a part of the family. And we did another pilot where lots of clinical psychologists who were using these kits in any way that they wanted to, whatever worked for them. this particular kit was for when a parent is in palliative care and they said that they get a big, they're called pips. The monster. A big pip and a little pip. And the big pip stays with the parent and the little pip gets taken everywhere by the kid or whatever. And when the parent died, the kid wanted the big pip put in the coffin so that had that continuity of bonds between the child and the parent even when the parent after death. I was like, my God, that's just amazing. Like I didn't, we didn't think of that when we were designing it, but all those little bits of feedback is always fantastic. So we do coaching programs as well. So I was part of the co-facilitating that for about a year. So over lot of 60 parents maybe in that timeframe of seeing them in their boxes online just to witness their faces when we would impart a strategy or something they could use at home or whatever, just to see their faces and just then when they reflect back the next week on how they use that strategy or that tool, it's just brilliant just to be able to witness that and to see that we were, you know, helping people immediately and you could see that impact that was just, and it was so simple, so it's kind of almost like a, a weekly thing that we get some validation that basically what we've started is, yeah, does have a massive impact. Naman Julka-Anderson (18:07) That's lovely to hear. I think you should blow your own trumpet about it, to be honest. Dr. Caroline Leek (18:11) it's really hard though, isn't it? It just feels like... Yeah. Naman Julka-Anderson (18:15) Well, I'm sure everyone listening is doing it for you as well, but I think it's the legacy of it, isn't it? And it's something, unfortunately, that with the statistics, one in two of us is going to get cancer. It's something Dr. Caroline Leek (18:23) Yeah. Naman Julka-Anderson (18:24) that someone will have to use or look into in some way. I think for us when, I think I've used this example before, but when we've treated paediatrics and radiotherapy, we have the magic string. So obviously the string goes all the way through the maze and yeah, the little baby they're holding it and then when you tug it they can feel it that kind of thing is really nice. I remember that Dr. Caroline Leek (18:40) Yeah. Naman Julka-Anderson (18:43) as a similar kind of ish example. Dr. Caroline Leek (18:44) Absolutely, yeah. And what the brilliant thing is, is that having done this now for over, I don't know, 14 years or something, and being with... people with lived experience, offer amazing different solutions or different ways of coping that we then can then impart to the new parents that coming along and getting support from us. And the beautiful thing about the coaching is that there's a whole cohort, so there might be like 12 of us online, and the support and the empowerment between everyone else is just brilliant. And it just shows that peer-to-peer support is so, so crucial and important because one of the things that people always say when they're parenting with is that they feel really quite alone because if they don't have somebody, a friend that's going through it, then to just to find somebody, it doesn't matter whether it's a different cancer type or prognosis, but it's just to find somebody that is going through parenting whilst dealing with cancer is really important. And the brilliant thing as well is having, because we do training as well to healthcare professionals, is now over the last few years, the feedback has well is getting that they've gone away and they've started to change their practice a little bit so it might be just having a little guide, sheet that they now go and they actually ask their patients are you a parent and if they say yes we've got this little thing go here they can signpost to us but also they are creating something within their own clinical practice and with their own ill and then sometimes I get some funding to give out little books or little things and stuff like that and it's really ignited those people within different trusts or wherever to do something and to actually and a lot of the time it's not because they they just hadn't thought of it before and so that's always brilliant to hear that how it how that's happening. Jo McNamara (20:29) It sounds amazing and especially from a healthcare professional's perspective when you know that someone is a parent, you know the NHS resources are so limited that you kind of feel like, right, how can I better support this person? Because there aren't the communities that the peer support groups, as you said, available within the NHS and so it's great to... have a charity like yours to be able to create those communities, create that peer support where people can link Dr. Caroline Leek (20:55) Yeah. Jo McNamara (20:56) up. So how can people get the training Caroline? You know if someone's listening thinking gosh this sounds amazing, this is something that I can bring into my practice, how do they go about finding out more? Dr. Caroline Leek (21:15) Well, if you go to Fruitfly Collective website, there's a thing called training for healthcare professionals and we do lots of different things. We do free webinars, which are really around just what we can offer. So it's pointless us having these services and supports if no one knows about it. So it's great if anyone that supports a patient who has parental responsibility, they can just find out what we can offer and what's available for them to signpost. Then we an hour webinar, so kind of like lunch and learn. So you can either do it as an individual and book on, or you can do it as a team. We also do half a day and then we do a whole day as well. And so the whole day has been brilliant. And so we really, really focus on how to change a practice within the parameters that you have, you know, and as well as really understanding the full kind from initial diagnosis all the way to palliative care. Looking at challenging situations, looking at challenging reluctant parents and all those kind of different things. So they can just book on there. So that's all available over this year. That's all set up so they can just... decide what's good for them. We've had cancer alliances that paid for us to come in. maybe get on your cancer alliances if they got little pockets of money available. And sometimes Macmillan grants are available, stuff like that. So nurses, know that have sometimes sort of found bits of bobs of money. But a lot of the stuff really, there's loads of free stuff on our website. So there's loads of worksheets that healthcare professionals just download and then give them out to their patients. So there's a lot to kind of explore if this is something that they need support in. Naman Julka-Anderson (23:00) If you were given the blank check Caroline, what would you do with it? Dr. Caroline Leek (23:03) Well, I think... That's very difficult. I would go to Mexico. No. I would... I think I... I'm very interested in the National Cancer Plan's idea of the neighbourhood community health hubs and setting those up because I think this is where our work would sit beautifully. similar, know, remember Sure Start? You know, there's kind of family hubs for parents with... who's just had a baby or whatever can go and get all the support they need around being a parent. And I visualise that being something within the context of health and if a parent has cancer they would be able to access support within their community because we know that... We know that people that access our services and support, sort of 80 % are white, British, middle class people. So how do we, and we're doing some work around targeting our parenting communities at the moment, but it's like, you have to go into the communities. Anyway, I think, it's a very difficult question to answer, but I think I would ensure that those community led programmes were accessible for every patient who is a parent. That's really why I dream it. Naman Julka-Anderson (24:14) You have to start somewhere though. I mean it's just as nice to have a cancer plan. Obviously a lot of work's got into it and neighbourhood health is what you need. You don't want people coming into the hospital all the time. They want to be in their communities. know, ideally wherever they feel comfortable that's what you need. So no, I think you've said what you needed to probably. I'm sure you'd have a much longer list if we gave you enough time. Dr. Caroline Leek (24:33) Yes! I know I'm Jo McNamara (24:35) You Dr. Caroline Leek (24:35) going to be going to bed tonight going, I wish I'd said that, I want that, I want that. Jo McNamara (24:41) If only the check was real. Dr. Caroline Leek (24:46) Well, I'm going to Parliament. I'm a part of the all-Parliamentary group on cancer on Tuesday. And so we get to meet some politicians. So I'm trying not to be too sceptical. I'm trying to be open and positive around trying to make that change and trying to get that but it's quite tricky. Jo McNamara (25:07) It is, but I think it's so powerful, isn't it, that they just keep hearing these voices and that it's a topic Dr. Caroline Leek (25:12) again. Jo McNamara (25:13) on their minds when they go to sleep at night thinking, actually, yeah, we do need to do something about that. And it's affecting so many people in so many ways, you know, even if you aren't the person who's experiencing cancer, as you see through your charity, you know, the whole family is affected and not just at the time. I think that's the thing, isn't it? When you are a parent it isn't just having a cancer diagnosis at that time that will affect that child for the rest of their life. you know, Dr. Caroline Leek (25:42) Absolutely. Jo McNamara (25:43) even if, you know, you do your absolute utmost to shelter that child, there will still be consequences of that. And I speak a little bit from Dr. Caroline Leek (25:50) Absolutely. Jo McNamara (25:51) my own personal experiences, as well as obviously hearing and seeing, you know, charities like yours working with parents. So it's so important that we kind of help raise the awareness of things like this. Dr. Caroline Leek (26:03) Yeah. Absolutely. I did some Churchill Fellowship research and I went to visit, I was really lucky to go and visit charities out in Australia and America, this Australian one called Canteen, which is a fantastic resource, so if anyone's listening wants to go and have a look at their stuff, it's brilliant. And they do lots of research, but one of the areas was around the kind of the economic impact of supporting kids, young people who are impacted by family cancer and what it means and it's dry isn't it? If you support them when they're going through crisis then actually what they're going to need at the end and health problems around it and there's lots of research that show that kids affected by parental cancer have a higher risk of developing negative psychosocial problems so it just feels like the research is there but there's nothing you know actually no one's doing anything about it and it's very hard as a small tiny tiny charitable organisation to sort of shout loud but yeah we're hoping that the landscape is changing a little bit. Jo McNamara (27:04) and as a... fellow Churchill Fellowship awardee, I would also strongly suggest that any healthcare professionals out there or even members of the general public who want to do some research in an area that is international, go and have a look at the Churchill Fellowships because I absolutely relished the time that I had in Canada as a consequence of that. I did some work looking at recruitment and retention of therapeutic radiographers, but the Churchill Fellowship is an amazing opportunity, but also a really nice community to be part of and you get to kind of publish your work and share your work within that community but also get it published as well for people to look at and read so definitely an opportunity for people as well so a big shout out for people to go and have a look but it is quite scary Caroline I don't know about you but I went to London beautiful Winston Churchill building a panel including his great great grandchild who was interviewing Dr. Caroline Leek (28:01) I Jo McNamara (28:02) me and I always remember one of the questions was about kind of, obviously I was talking about cancer and they said, yeah, but he did like his cigars and he did well, didn't he? He was at a ripe age and I was talking about oncology, but it is highly Dr. Caroline Leek (28:17) It's Jo McNamara (28:18) competitive, but an amazing opportunity as well. Dr. Caroline Leek (28:21) Yeah it is and what I love about, one of the things I loved about it is that it's really open for anyone. You don't have to have an academic clinical background or anything and the scope of what you can, know, it's a good idea and they think that, you know, if you go and research it and you can bring it back to benefit the UK citizen then go for it. yeah. And they recruit every year so I would definitely advocate anyone to go and have a look. Naman Julka-Anderson (28:54) So Jo, you talked about your experiences. What would it have been like if you had this sort of support when you were going through your treatment? Jo McNamara (29:00) Yeah I think it would have been really good because I was quite blasé about it but my husband on the other hand was slightly freaked out that I had cancer and that certainly rubbed off on Noah. You know I was there going no it's okay mummy's gonna be fine and it was interesting actually that he said last week whilst we were walking to hockey he said we're learning about cancer at the moment. And he said, I was telling the class that you'd had cancer. And some people didn't believe me because they said you didn't look like someone who'd had cancer. And I just, I thought it was really interesting that he had kind of divulged that information, of which I'm really happy that he did, but that he's still kind of, I don't know, he still talks about it and it's still in the forefront of his mind. Whereas actually I kind of forget about it now and go through peaks and troughs of, yeah, that was like a long time ago, let's forget about it. But for him, you know, he does still talk about it it does still come up and he will occasionally ask me about my scar and things like that. It would have been amazing to have resources where I could maybe have had a better conversation with him because I think I just tried to shelter him from everything and make it quite blase. But in doing so, I actually think I didn't take on board how just having a parent with cancer affected him. You know, because you say the word cancer and he would have said that to his friends and I'm sure they would have gone, my gosh is your mum going to die? So I don't think I necessarily even thought about that whilst I was going through it because I was thinking me being blasé about it is the best way to do it and actually... It probably wasn't and having resources like this and getting me to think about it more from his perspective would have been good, I think. Dr. Caroline Leek (30:46) I think one of the areas that parents sort of... Well, think us adults is that how much children already have in their head about cancer. So when we did our primary education, a primary school cancer education program, we went into the, so we taught over a thousand children between about age nine and 11. And we went into train the teachers first of all, cause we didn't want to, you know, make them have a, open up a can of worms and then then suddenly freeze up all the questions that we're going to get. But we gave them posters and we said, you give these to your class? And before we came in, and one of them was, I think cancer is caused by, I know cancer, I know this about cancer and I worry about cancer because. And so all of these posters had mad stuff on it. And so it was a real clear indication that kids, even as young as nine, carry stuff in their head. Majority of it is misconceptions and bonkers. And as an adult, you can kind of see where some of it comes from. Like, you know, one was drug dealers. Sometimes it was a toxist from faeces, kissing and all those sort of things. Or being cold and not having a coat on. So you can see where those kind of... kind of things come from, whether it's parents nagging, know, to put your coat on, or drug dealers, know that's dangerous. So they always had things in their head and they carry that with them. So if no one ever talks to them about cancer, then they're going to continue to have these, maybe continue to have these misconceptions. But also it's naîve of us adults to think that they're just in a blank slate, even as young as that. So we often, sometimes with parents, we say, the first question might be if you want to ask what do you know about cancer and they might be really enlightened by what they might already have in their heads. So your kid Jo may have already had things going on in his head and already, I mean because you think about it, it's like every school, primary school, like secondary school have cake sales for Cancer UK or Research UK or in the buses, trains, there's public health campaigns as charity campaigns. So they absorb it all but we kind of forget as adults to even you know kind of start a conversation or think about that they know anything. Jo McNamara (33:00) I think it's interesting just thinking about the age demographic that when children are in school they might have grandparents, great-grandparents who have died of cancer but at quite Dr. Caroline Leek (33:12) Yeah. Jo McNamara (33:13) an old age and so I can definitely see how the connotations around cancer are often around death just because of the age group that they're at and I always think that's quite interesting when I've gone in and done STEM talks before, I was always quite surprised at how many children had actually, you know, had experiences of dealing with grandparents who had cancer Dr. Caroline Leek (33:33) Yeah. Jo McNamara (33:35) and unfortunately they had died as a result of it and so there was that fear around cancer because they Dr. Caroline Leek (33:41) Yeah. Jo McNamara (33:41) didn't know a lot of people who'd had treatment and been cured as a result of it because of the age demographic. Dr. Caroline Leek (33:47) Yeah. And I would say my experience of doing those primary school education programmes, the fear, it was more curiosity. would say that was the one thing that was really evident from the children. The fear was definitely from the adults. So when you go into a staff training, know, staff room to do the training. And the fear of the lives palpable with all the adults in the room. You go into assembly of 100 kids and statistically some of those are going to be impacted. Well, we knew some of them were directly impacted. Some were recently bereaved because they had support staff next to them. But not one child ever left. The empowerment that they had from like we did mad games and shouting out things and puppets and all of that sort of stuff. They loved that experience. They felt really empowered to share. their experience with their classmates. There was beautiful little peer-to-peer support, you know, around empathy and then their friends, you know, talking to them and saying, you know, how did that feel? And it was really surprising to all the teachers. The teachers were just so shocked at A, that some of the kids that wouldn't normally engage with strangers that came into the school would come up to us just to tell us about my... auntie had breast cancer. They didn't want any support. They didn't want anything. It's just that they wanted to share it and to have that platform, that safe platform just to talk about it. And also the teachers have really talked about how many kids that they did not know were impacted, whether that was because it wasn't parental, but as you say, it was wider family or within the community. So it was a really interesting project for many reasons. I used to be called walking down the street and all these kids go, there's a cancer woman. And so I sort of became this local celebrity just being able to talk about cancer and it's sort of people would shuffle you away. And sometimes you'd get the teachers that would want to take you into a little room just to tell their experience because they've never told anybody about their cancer experience and you're just thinking we've got a lot of work to do to make our society a lot easier for people who have experiencing cancer just to to talk about it. And it starts with kids and that's why we really need it in schools when they're little so they don't be Jo McNamara (35:53) Yeah. Dr. Caroline Leek (35:54) frightened around talking about it. Jo McNamara (35:55) Yeah, absolutely. it... Naman Julka-Anderson (35:56) and then they're all trained to become therapeutic radiographers like us. Jo McNamara (36:01) If... Dr. Caroline Leek (36:00) Yes! You see, we can take over the world! Jo McNamara (36:05) Absolutely. I do think as well though, it does lead into so much, doesn't it? Because if children understand about, you know, not just cancer, but other health care... health conditions, long-term health conditions, that potentially then that helps inform public health and you know knowing what's Dr. Caroline Leek (36:20) Absolutely. Jo McNamara (36:21) normal in your bodies and things they kind of then can appreciate why they're doing self-checking and why it's important and yeah it feeds into Dr. Caroline Leek (36:27) Yeah, absolutely. Jo McNamara (36:29) so much doesn't it. Dr. Caroline Leek (36:30) Absolutely, but it was really hard to get that project into the schools. It was funded by the Welcome Trust and they said... we will give you the funding, but before we give it to you, we have to have five schools that sign up that will allow you to go into schools. I mean, we build it as free, it was science, all those things that they want. But it took one school, really progressive school to say, all right, it turns out the head had breast cancer. But once that was done, then it was word of mouth and then we were able to do all. But yeah, so it was really hard. So I can't see the curriculum changing just yet. Jo McNamara (37:09) It's really interesting, isn't it? Because my sister, she's a primary school teacher and they will have people come in and do talks about gun crime and, you know, trafficking and things like that. And you think, you know, and all the schools in their area will have this visitor go round and do this because it is very prominent in their area. But it's interesting then that some schools would have talks about that but not about health and cancer. Dr. Caroline Leek (37:35) Yes. Jo McNamara (37:36) It's really, it's just eye-opening, isn't it really, about some of the societal challenges that we still have when it comes to talking about cancer. Dr. Caroline Leek (37:45) Absolutely. Absolutely. Yeah. And whenever we Jo McNamara (37:48) So. Dr. Caroline Leek (37:48) do our training, I always lead it off. We've got this great audios of the kids doing it. And I just say, and all the feedback we ever get that is always within it. That's they just say, my word, because it's just a quick demonstration of what's inside a child's head. It's funny, but also shocking kind of thing. But yeah. Jo McNamara (38:15) So we could probably talk all night and I know you're at your sister's so we don't want to take you away from Dr. Caroline Leek (38:20) What? Jo McNamara (38:21) family time. But we always finish the podcast with top tips for our listeners. So is there anything you'd like them to go away kind of thinking about or any tips that you think that you could impart? Dr. Caroline Leek (38:33) I would say the three things that we bang on about really is the three C's so that's communication so if you're a healthcare professional communicate with your patient, understand if they have a parental role because parental identity is probably one of the main things that they think about or who they are. And then the second one is coping. So thinking about how a parent navigating family life whilst going through treatment or after cancer or whatever, how they can be supported with their coping skills for themselves as a parent but also for their children. And there's lots of stuff. So on the website there is loads and loads of different strategies that can be used. And the third is connection. ensuring that parents and children, whilst a parent is going through cancer and being treated, that connection is still there, particularly with teenagers. So little kids will get on the bed or the sofa or whatever. But the connection with the teenagers, just try little bits and pieces to keep that there because they do need your love and support and security but sometimes they don't show it. Jo McNamara (39:35) Amazing. Thank you so, so much for coming on Rad Chat. We've loved having you on and I really do hope that anyone listening does go and check out all of your resources because I definitely think they'd benefit anyone listening, whether you're a parent, healthcare professional or someone in education who maybe supports the children. So a huge thank you again to our guest, Dr Caroline Leek, for talking about her experience of having a parent with cancer and the work of the Fruitfly Collective. Thank you all for listening to Rad Chat with myself, Jo McNamara and Naman Julka-Anderson. Thank you very much. Jo McNamara Rad Chat Host (40:08) So what do you do now? Well you can use this episode as part of our free continual professional development accredited content which offers flexible learning that fits your busy schedule. Just check out the show notes for the reflective questions, links to literature and resources and link to the completed form to receive your accredited certificate. Naman Julka-Anderson (40:17) Stay up to date with the latest radiotherapy and oncology advancements by liking and following us on social media and hitting subscribe wherever you get your podcasts. Jo McNamara Rad Chat Host (40:27) Please do join our supportive community designed by professionals who understand the unique challenges of working within radiotherapy and oncology. Follow us across all of our social media channels and make sure to check out our website www.radchat.co.uk. Together we're actively working to improve our profession and make a lasting positive impact on cancer care. 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