Now, it always used to drive me mad. It was the same response I'd get when I got breast cancer. But that sideways head tilt that nobody wants to be on the receiving end of. And I remember when I would tell people I wasn't just a single parent, but I was like a lone parent. And they'd be like, oh, you know, aren't you brave? You know.

Welcome to the Breast Cancer Now podcast, providing support and information to anyone affected by breast cancer. This podcast contains the personal stories, opinions, and experiences of its speakers rather than those of Breast Cancer Now. Today we're talking about breast cancer and parenting, or more specifically, solo parenting. Our guest is Victoria Mapplebeck, a single mum and documentary maker who filmed herself and her son for 20 years on her smartphone. She tracked the first two decades of their lives together, including Victoria's breast cancer diagnosis. The film Motherboard was nominated for several awards, and Victoria now teaches other people affected by breast cancer to make their own films on their smartphones. Victoria, welcome to the podcast.

Thank you for having me.

So, we're going to start with a few warm-up questions. Please just say whatever comes into your head. So, this is the Breast Cancer Now podcast. So, let's get to "now" each other. See what I did there? If money was no object and you could go anywhere in the world on holiday, to live, whatever you like, where would you go right now?

Venice.

Oh. If you could have the most talented private chef cook a special meal just for you and your loved ones, what would you order right now?

Oh, a really good chicken roast dinner.

We talk about bucket lists and life goals and the distant future, but there's nothing quite like cancer to ground us in the here and now. If there's one thing off your life goals list that you could do now, what would it be and why?

Surfing weirdly but I have a very dodgy knee so I would never be able to do the kind of bending...

That doesn't matter in the world of... this dream world where your body has no restrictions!

Surfing, surfing, I love California.

And on a much smaller scale what brings you joy right now?

Definitely being creative you know Motherboard's been finished for about six months and I've just broken a kind of filmmaker's block on my next project and it felt so good. And I noticed how much I didn't stress on the health stuff when I was being creative again. So definitely being creative. It's like I'm a junkie for it really.

It's therapeutic.

It is. Complete the sentence. Right now I am...

Energised for a change, which is not always the case.

I like that because you're energised by your creativity.

Yeah. Yeah.

All right. Well, we want to talk about Motherboard, your incredible film which I watched last week and absolutely loved it. Congratulations.

Thank you.

Why don't you tell us what the film's about?

So, it's shot over 20 years and effectively it's a portrait of me raising my son Jim on my own and it began after a very short relationship had broken up and I found myself at 38 single, pregnant and broke and decided to go ahead and do it on my own as a solo mum.

You were already working as a documentary maker at that point.

I was a freelance documentary filmmaker at the time which kind of virtually I had to stop overnight because I just knew that wasn't going to work around being a solo mum particularly. And so the film you kind of see I don't know if you've seen Richard Linklater's Boyhood but that so it's like a sort of documentary boyhood where you see my son Jim almost grow up on camera. So, you know, there's footage of him in the very early pregnancy scan material right the way to him at 20 giving me dating advice. So, it's got that huge arc. And along the way, I was diagnosed with breast cancer out of the blue when he was about 13, just coming up for 14. So, it charts what a difficult time that was for both of us as well. So it's but it's the highs and lows. Like it's got its as you'll know it's got its dark painful points but it's also got Jim's very funny and it's got a lot of gallows humour and a lot of comedy as well.

Yeah. I mean, that's the thing that struck me the most about the film, and we'll talk in a moment about the breast cancer diagnosis and what you went through together, but the thing that strikes me the most about this film is Jim and how much of an amazing, mature, even when he's only 12, 13, funny, kind, loving. I mean, what we see on the film is what you've put together, but the impression that you get of him as someone who's never met him is what a wonderful boy to have as your son. Is that what he's really like? What is he like?

It is what he's really like. Um, and I think somebody once said to me, "Well, what would you have done in terms of this project if he'd been introverted?" And I bet there'd be no film. You know, Jim is a natural performer. He's an actor. He likes being on camera. He always had power of veto. So he kind of watched any of the footage that we were wanting to work with. So he kind of approved it along the way. We're so different in many ways, but the one thing we have got in common is a sense of humor. And I suppose a particularly a gallows sense of humour, which was definitely a way that we got through not only breast cancer, but the difficult teen years cuz you're right, he's lovely through lots of the film and got great emotional intelligence. But it does actually also show the more difficult points of parenting when your kid hates you. I mean, like just looks at you with such contempt and doesn't want to be in the same room as you. And that we went through those times. And I think they were probably made worse actually about Jim's reaction to my breast cancer at some point. But I wanted both because both are parenting. You know, the joy of it, but also the challenges of it. You know, it can be hard. It's a sped up version of the first 20 years of parenthood and it really charts a lot of the emotions that a lot of people go through.

Yeah. So, it takes place over 20 years. Jim is now 22.

Yeah.

Did you pick up the camera or your phone thinking I'll just do some little films of my new baby or did you pick up the camera thinking I'm going to do a 20-year project of his whole life?

The former. So he didn't come out of the womb with me thinking right, you know, I'm going to chart the next 20 years of this kid's life. And so I had my old DV camera from when I'd been a self-shooting director and it was just home movie footage with the exception of there's a scene, you know, when my ex partner asked for a paternity test and it was really awful to do. You know, Jim was only about 18 months old and I decided to film that. So I think there was that filmmaker hat in me of knowing that that was painful. And I asked, I was teaching at London Film School at the time and one of those ex-students filmed that scene for me. But the rest of it up until Jim being about eight or nine is all just what was meant to be home movie footage. And he was the whole project began actually as a written memoir which I couldn't which Curtis Brown took on which was all exciting but then it didn't get published. And then finally I got a first smartphone short film making commission from film London and that's when this whole project began to be film basically and I made a few shorts along the way before I made Motherboard. So much of it is in the home which I think a lot of people with breast cancer will really understand. You know, your horizons shrink and you very much, you know, it can get claustrophobic at times, but a lot of your life is at home and a lot of your life is at home when you're a single parent. You know, without child babysitting, you sort of, you know, you're the one that's indoors. Uh, but obviously both of us have a life outside of the home, particularly Jim. And so he was amazing in giving me his phone footage that, not all of it obviously, he I'm sure he censored a lot of it but that footage is a big part of Motherboard. So you see him he went to Brit school and you see the friends he has and you see him going to like festivals and stuff. And so I felt he was so generous with his time and his consent and his ideas that he needed a credit that was beyond just being the subject of the film. And so that's why he has a creative consultant role.

Has he at any point in his life said, "Mum, stop filming me"?

Yes. And there's there were times where I filmed myself very regularly because obviously I can give consent for my own stuff and I'm kind of open to it. There were times particularly in the when the when I got diagnosed with breast cancer that we didn't do anything for I think over a year at one point and I got very good at pivoting around what he would be okay with and what he wouldn't. So I always shot on smartphones which made a huge difference because he didn't have there wasn't like a crew in the in the home or there wasn't even a big camera with a lot of faff. But when I was first diagnosed, even that felt too much. I didn't want to point a smartphone in his face and say, "How are you feeling about everything?" And so I reverted to audio only. So we would do these audio only conversations that weirdly were like almost a therapist hour. And we couldn't get any therapy at the time, you know, like I was really hoping that there would be some kind of family counselling and on the NHS and there just wasn't anything. He had a bit of counselling at school. But that was it. And so that was a useful thing to to be really mindful of when it was too much for him or when he'd had enough. And and of course when he's in a good mood and he's jokey, he's up for it, you know. So you have to just work around where he's at really.

In the film, you mentioned that you met your son's father through a dating agency, but you soon found yourself, in your own words, single, pregnant, and broke, but then you also talked about how his father asked for a paternity test. And then in the film, I don't want to spoil anything for anyone, but we do see him, Jim, attempting to make a relationship with his father, but you've been a solo parent basically for these last 20 years. What can you tell us about the relationship there? Does he does he have the relationship with his father a little bit now?

He was his dad came to see him a few times when he was a baby and I was like really, you know, we we had not had a long-term relationship. you know, we'd had five dates and I was very open to him being involved and was hoping that he would want to be and it was a lot of sort of one-off whether he would or whether he wouldn't. And then finally when he'd seen Jim a couple of times when he was a baby, he just said, "I can't do this." And and then there was this long gap because he'd made it very clear that he didn't want to be involved in Jim's life. And I don't want that to sound like a tragedy either. I would have liked it, but I also wanted to embrace it and knew was really confident that I could do it well. I think I was raised by a single mom, right? And my dad was I did see him, but he was a pretty rubbish absent dad. you see in the film how that relationship plays out. So I knew I could do it on my own and that I would do it well. But then when Jim was about 13, he asked if he could see his dad. And that was difficult because I was really worried that like trying to manage his expectations cuz I was worried that his dad would not want to see him and that this would be more rejection. And it took me a while to work out that he was ready and that it was the right thing. And then his dad did see him and saw him about three times and then I think Jim that it was kind of enough for him. I don't I think it was it's quite hard to make when you've missed so much of someone's life it's quite hard. Um, and so I think I think you know never say never who knows but they met about three times.

And when you're so close to him as well like and the whole thing must have been so difficult for both of you but it's lovely hearing that you felt that you could you felt confident that you could do it even at the point when he was a baby and you knew you were sort of on your own with him. That's really cool.

No, it always used to drive me mad. It was the same response I'd get when I got breast cancer, but that sideways head tilt that nobody wants to be on the receiving end of. And I remember when I would tell people wasn't just a single parent, but I was like a lone parent. And they'd be like, oh, you know, aren't you brave? You know, oh, I really struggled to do it so much with the two of us. And that used to really annoy me because I can see I've got three fantastic brothers who are all brilliant dads and I can see how great it is when it's a two parent job for whatever gender and it's done well. But I also had a lot of friends who were in extremely unhappy relationships where the men were not doing diddly squat.

Yeah.

And I felt like I had a lot more single parent women in my life than actually they were in on the in on paper.

Yes. I get you.

You know what I mean? And you know, Paloma Faith talks about it really well, but the mental load of parenting that still comes to women. So, I didn't weirdly feel that different. You know, I felt like in Jim's primary school, the people that turned up at the school gates when they were ill or where they had forgotten their book bag were 99% the women.

Yeah. Well, let's you've mentioned it a few times. Let's talk about the breast cancer diagnosis.

So Jim was about 13 at this point. It was just before Christmas in 2017 and Jim was yeah 13. I had had my first mammogram about 18 months earlier which had come up fine. And then and I'd pushed for that one because I was on HRT in my 40s and I was nervous. I'd be about 53 by this point. And then the second one came up that would have just come up when Southwark Council got to me on the list and I nearly didn't go thinking I've had it like you know you only have them every 3 years I've had one 18 months ago and if they turned me away at reception I would have gone. Unfortunately they didn't. and and that's what in a way added to the shock of it. So, uh, I got called back from that mammogram and then had that going up to the breast clinic for more tests and I didn't have any lump and no symptoms. So, it was a shock and it was 3 days before Christmas which was added to the drama of it. It was a yeah, terrible time of year to be diagnosed. Um, so it was yeah, it was it was a real shock. stage three, grade three. So I had to have sort of chemo, radiotherapy, the works. I was lucky in that I had big boobs and so I was able to have a reduction instead of a mastectomy. So that was one thing that was made it bit easier.

And how did you break the news to Jim and how soon did you tell him?

So I remember that I think for any woman who's been diagnosed if you've got kids that's your first thought and that my angst was all of that and he was at a friends and we were meant to be going to kind of like a bit of Christmas theatre at the South Bank that night and I suppose he began to know that something was wrong when I was going this is all taking longer than I thought. And I remember sitting, you know, they'll do the little family rooms, which again, you don't ever want to be sitting in, you know, waiting for a breast cancer nurse to come and talk to me after the diagnosis. And I remember thinking, could I what? How could I phrase it where I wouldn't mention cancer?

Like, is there a way in front of Jim, do you mean?

Yeah. No, this was before. So, I hadn't gone home yet.

Oh, I see.

So, this was me sort of just digesting the news and thinking, "What am I going to say to him when I get in?" And I remember thinking very quickly immediately, no, that's crackers. I can't I'm going to have to have to tell him it's cancer. And I think the thing that was probably helped me just on that initial night, and I haven't, weirdly I haven't got I must have blocked it out because I haven't actually got any memory of what I said to him. And I know I went back that night and I did tell him, but I think what helped is, you know, there's so much waiting and you don't know and but I would have been straight with him because the radiographer said to me looking at what we're seeing with I'm 99% sure that it's breast cancer. But I would have definitely, you know, at that point, you know, you don't know you're going to have chemo and so you're hoping that you might be able to skip the chemo. And so I think that helped that it was a sort of gradual bad news coming in. It wasn't. It didn't all hit at once.

Did you film that moment telling him?

No. So, um, what I did do, and this was quite a useful technique in the film, was I never filmed live those difficult moments. And so that when I did have filmed conversations with him, there were like a recap like days or weeks afterwards. So there is a bit in Motherboard where it's about a week we're in Brockwell Park, which is my local park in Herne Hill. And I and I'm saying, well, that was fun. Breast cancer diagnosed for 3 days before Christmas. And that is that's about a week 10 days after I got the news. That was the first time that I'd filmed him. And actually it kills me when I look at that because he looks really pale and stressed and he's trying to be positive but you can see like it kills me because I can see that what he's going through.

You know, it's funny, isn't it, how we can document our whole lives, but I often find, see, I've documented my whole life in a different way, which is writing it down in a diary, which I always had when I was younger. And the day of my breast cancer diagnosis, I think I wrote one paragraph, I've been diagnosed with breast cancer, I'm going to be fine. Something like that. And then I didn't write anything for about nine months. And I think it's a little bit like you with your filming. It's like when something is that seismic in your life, you stop documenting. It's almost like it's too it's too big to record it. And I suppose also because you were having conversations with the person closest to you, maybe it feels like if I shove a camera in your face, does it trivialise it or does it does it make it seem like I'm coming between the emotions that we're feeling?

Yeah. So, yeah, definitely with Jim, I felt like the cancer narrative is definitely done after the event and not live and uncut. But when I started through the treatment, you know, all of those shots which I got when I was doing my chemo and the radiotherapy, those are the chemo ones are live of me doing the chemo. And I did used to, it's one of huge advantage of shooting on a smartphone because you'd you I'd kind of rock up to my chemo and I wouldn't have to if you know if we're filming with big kit and a crew, you'd have to have gone through the comm's department and ask for permission. And nobody's frightened or fearful of a smartphone. And of course, I would explain that it was in selfie mode, which it always was. So I wasn't filming other patients. And I was really mindful of that. And of course, nobody, not one person said no. And sometimes when I was going through CT scanners and things, I couldn't press record. And so like a radiographer would hit record for me. I'd set it up, you know, and I have to say that really helped. And then you see that I use video diary a bit as well, you know, when I'm losing my hair or when I'm frightened of a reoccurrence or whatever. And I used to feel that on the really shittier days, for want of a better word, if I'd made something creative or told it as a story, it did help. So I think with me there was more documenting it live. But with Jim, yeah, it was it was definitely after the event or also jokey stuff. So you know, there's that scene in Motherboard when Jim's... the steroids actually that's what it's referring to. So, I'd lost my temper because I was on the steroids when I was doing chemo, which make you go bonkers. And so, the scene is him joking with me that he's going to have a grumpy jar where I'm going to have to pay a pound every time I lose my temper. And I'm saying, "What is there one for you?" And he's going, "No." I'm saying, "Well, not one for you cuz you because you're going to play the cancer card", and so tends to be that there's a bit of comedy in the in the way that me and Jim deal with it. Or if it's darker stuff where he's worrying about what's happening with me, it that's audio only.

Yeah. Just going back to when you were first diagnosed, what was your reaction? I mean, I immediately had one of those moments of just people not thinking about the patient and what it's like from a patient's point of view of being diagnosed. So, you know, there's a woman radiographer and generally I found women were so much better than than male oncologists, but this this was an exception to that. And I had a radiographer that was just so cold, like saying to me, I think I'm 99% sure you've got cancer. And of course, I'm devastated and really frightened for Jim and looking for reassurances. And I know they can't always give you that, but she was so cold in the not being able to give me information. And then just as I was leaving, she said, you know, there are some positives. And I'm thinking, oh, she's going to say I don't need chemo or something. And she goes, Christmas is coming. And I'm like, so I think I was reeling. And then the counterpoint to that was then a breast cancer nurse who was one of the nicest women I've ever encountered who was so cool about my fears. I remember having an immediate fear about losing my hair because I knew that that would frighten Jim and she was just so cool in the listening. So that was good. But I think of course my fear went to is it going to kill me? And I think when you're a lone parent, that's especially frightening. And I had to immediately start thinking about like I was going through my archive the other day and I found this voicemail I'd left for my brother. It's going to make me cry. when I was basically telling him he's Jim's guardian if anything happened to me. And I was sort of telling him where everything was. And that just those things I think are harder when you haven't immediately got another parent. Jim's got my mum who's fantastic. But my mum was in her 80s when I got diagnosed. So yeah, all of that. I think it was the bit cuz you know I was telling you how really happy and fulfilled I was as a lone parent and how what a good job. I mean, I'm proud of what I did, but the one time it really was tough and it did make me think, this is more difficult is when you get a health diagnosis or a mortality wakeup call because there isn't another young person youngish, I wasn't that young, that there isn't another middle-aged person to sort of fall back on. And that that was really hard.

Yeah, of course. And we see that in the film. There's a there's a part where you break down, pretty much the only part I think where you break down in tears and you say, "I just want to get him into adulthood." And that is a phrase literally that I've heard from quite a lot of people who I've met in the cancer world, particularly people who've been diagnosed with metastatic breast cancer who are single parents and who say, "I just want to get my child into adulthood." Because you worry that what will happen to them if you're if you're not around.

Yeah, I think it was, you know, with Jim was 13, just turned 14 when I was diagnosed. And I think I knew I think the teen years are the hardest. I really do because it's when you've created this human being and they're naturally different to you. They're becoming their own human being. and the challenges they have around falling out with mates and the nightmare of like cancel culture and judgment within teenagers and their use of phone and screen time. Oh my god, so complicated and Jim was beginning to have those issues as any teenager would be and needed me in those moments so much and it was such a more complicated need than pre-teen. Jim was such an easy kid and like you just had to entertain him, feed him, clothe him, hug him and he was like happy as Larry and it and so I think it that made it harder of feeling I just want to be there and thank God I was able to be. I feel incredibly lucky that I was.

In the film we don't see a huge amount of Jim crying or being upset off camera, sorry, on camera. And I don't know if that's because a lot of it happened off camera or whether he was just extra strong, but um, is there an element of him being cuz you're a solo parent, but he's also an only child. Do you think there's an element of him being the only child of a solo mum that has made him almost like a parent to you as well because he felt like he had to look after you and look out for you and comfort you when you were going through your breast cancer?

There's a scene that I keep in which is the Christmas following my diagnosis after I'd been through all the treatment and done the chemo and lost my hair and everything. And I remember thinking that Christmas was going to be great because I was like through all the treatment and weirdly it was harder than the one before when I just had the diagnosis because I'm burnt out physically with what I've been through and I've got really bad arthritis and so I suddenly got lower back pain and convinced myself but you know it was metastatic cancer and you see a video diary that I do and then that's hard enough to watch. These are the points I always have a toilet break. If I'm watching at a festival, I leave at this scene because it's so hard. But the scene that's harder is then when I'm filming Jim and usually in the film, he's really monosyllabic. He does not want to talk. He's not in the mood. And I get visibly irritated with him. And I leave it in. And I think it's a flawed moment of parenting because I think what I what I see now is you're wanting him to be there for you and he's a kid. He's 14 years old and he's really suffering. And I was persuaded to leave it in and I'm glad I did. We had a team of consultant editors and one of them said to me, I don't look at that and think terrible, terrible mother. But he said, "What I look at it as is that you and Jim are both really suffering, but for the first time you can't help one another, and that's weird because you have been there for each other and and you're in separate bubbles dealing with it in different ways." And so I left it in. But I think on the whole I was pretty good in not expecting Jim to support me. And I look back on it and think what was very silly about my cancer treatment. And I don't know whether other women can relate to this, but I've got this kind of northern sort of sensibility of like get on with it. Be resilient. And what I look back on it now and think is really sad is that I did every single appointment and chemo session and CT scan on my own. Every single one. And if I ever got another diagnosis, I'd be really careful not to do that. That was silly. I had, you know, I hadn't heard that word hyper-independence as being a problematic thing. And I'd always thought it was a good thing. And I look back on it and think that was really silly. And it wasn't that I didn't have friends. My friend Kieran was going, I'll come with you to chemo. And I'm like, no, you know, I don't want you there because I sometimes I'm vomiting. Like really? So I've had to unlearn that. But I also felt that was the right thing. So Jim was not involved in doing any of that. But yes, I think in that moment you see that I'm needy. I'm feeling the loss of him. I think what happened was he did that moving away from me the way that all teenagers do. It's like a natural and normal and healthy part of growing up. But he did it especially fast when I got breast cancer. And quite brutally. And I think he was terrified about his need and how much he needed me. And so I think he deliberately really pulled back very quickly and very dramatically. And of course that in the middle of treatment was really hard. It would have been hard anyway. It's hard. It's a hard point for a parent that when you lose the connection. But the my mum used to be great. She'd say, you know, they leave you but they come back. They come back as an adult. And that's really the case with Jim and you see it in the film, but it's really hard when it's happening. And it was really hard it happening during treatment.

Yeah. You're going through two separate things that are both really, really hard in themselves. The child becoming a teenager and the you going through breast cancer. And to have them both at the same time is a lot. Was like a double whammy. And I think that breast cancer and the anxieties that come with it and the side effects of treatment, they often turn the volume up on other things in your life that aren't right. And I think that's what it did at that time. The best lesson I found of the parenting teens is to stop trying to fix everything. Because I think because I'm a mum and I'm a filmmaker and producer and director, I'm quite I'm used to fixing problems and teen problems won't fix that easily. And so what your teenager I think really wants or even child of any age is quite often just the listening. And that's really painful. So to hear your child express a lot of pain or worry or anxiety, you just want to like stop it. You don't want them to go through it. And I think it's an acceptance of they're going to have to and it's not going to be the most terrible thing. And just to sit with it and listen, I found that so hard, but things got a lot better between me and Jim when I stopped trying to fix it.

Yeah.

One of the things that I think is really difficult when you've got breast cancer is the statistics. And Hannah Fry did a really good documentary, didn't she? I think she had ovarian cancer, but where she said, "Even as a mathematician, I'm struggling to understand the stats." So, you don't understand them that well and I think you're sometimes misreading them and it's obviously full of anxiety. I had this belief of I should be honest with Jim and that that was the healthier thing and when I was going through it, you know, I've now subsequently found amazing Caroline Leek from Fruitfly Collective, but it wasn't going at the time or it wasn't I didn't it wasn't on my radar. So, I was really floundering around for how do you talk to a 14-year-old young man about it? And I think sometimes I would quote the statistics about so if I do chemo it's going to improve my odds by a pathetic frankly whatever it was at the time it was about 3% maybe 7% on 10 years stats and I just sometimes Jim would quote back at me and he would have misunderstood or misheard and so I would it's that fine balance isn't it because you don't want to hide what's going on and I think that's not healthy. You know, I've got a friend who went through secondary breast cancer who did not tell her younger child at all until a week before she died.

Oh wow.

And so I know that that's a difficult that's not an really great other end of the spectrum, but I think I gave him there's too much information and it's overwhelming. And so I look back on it and I think I think I'd have tried to think less about it all in statistics as well or at least do the Hannah Fry of like really trying to understand them because they're difficult.

Yeah. If you had had a partner, those are the things you would have talked through with another person.

Yeah. And because you don't have that and you're conscious that you want to be honest with your son and you want to this is the way you've chosen to do it and you want to be honest and upfront with him and I think that is the right approach but you then end up sharing more than you might share if you had perhaps had someone else that you could have talked to about it and yeah and I think at the time you know it was pre-ChatGPT that generally I think is better for health it's probably not better than Google. Better than Google. And I would disappear down the Google rabbit hole and you're looking for reassurance which you're never going to find and you're trying to understand academic medical reports which of course as lay person can't. So I know having done that if I ever got a bad diagnosis again not to do that like to be really careful about how I do that.

Yeah. I would also say to anyone listening if they're newly diagnosed, I would say do your best not to go down a ChatGPT or AI rabbit hole because yeah, we all know that AI gets a lot of stuff wrong. And if you're asking a machine, how long am I going to live? You know, what's my chances of survival? How, you know, is the chemo going to work? There's such a high likelihood that you're going to get wrong answers and you're going to terrify yourself because that machine doesn't know. Not even if your doctor knew exactly what the trajectory of your life was going to be based on the treatment they're going to hopefully give you. Then they would be able to tell you, but they don't even know that. No one knows that stuff. So just please listeners please just don't spend too much time googling or AI-ing your diagnosis. Take some discipline, read a book instead. Go and read a novel. Go and watch some really absorbing TV. Go and watch Motherboard which is your brilliant documentary.

That would be good!

So you mentioned Caroline Leek who is the founder of Fruitfly Collective which is an amazing organization that helps parents to deal with parenting around cancer. So Caroline lost her father to cancer when she was very young and she wasn't told that he was dying. She wasn't really told much at all. So, she now runs this organisation and for our listeners, we've done two podcast episodes with Caroline Leek talking about talking to children, teenagers, uh, younger children about cancer and also about metastatic cancer and grief. So, we will put a link to those episodes in the show notes in case anyone's missed that and in case anyone's in a similar situation to you with a child of Jim's age or another age who they're struggling to know how to break the news or talk to them about it. But separately, you're working on a new project running workshops to teach other patients and young people with cancer how to make films on their smartphones. And you're doing that with Caroline Leek. So, tell us about that.

Well, she's amazing as you know. I love the work that she's done at Fruitfly Collective. And I think what's what particularly interesting is the work she's done for when I could have really done with that support about how do you talk to teenagers and young adults and about that being a whole different set of kind of expectations and needs and kind of a tricky one to navigate. and I met her via when I was starting to work with Breast Cancer Now and we've come up with this project idea called family viewing and the idea is that it's a series of workshops and with the kind of amazing creative tool you have in your pocket which is your smartphone of documenting your family life and it it's effectively for parents to work with really teenage kids and young adults from sort of 14 to 19 and the idea there'll be kind of light touch kind of creative ways to get into making a project. So I thought one might be like what got me through breast cancer would be the voice notes and the voicemails that people would leave me or the stupid I had a friend Glenn that used to do me stupid little Instagram videos with filters and you know your phone is like a kind of diary of your life isn't it? It's like a mirror to your life. So you know that we're going to do one way find a voice note or a voicemail and visual find ways of visualizing it as just really light touch sort of little creative exercises like that and I'm doing it because I really found that that kind of creative outlet when I was going through the breast cancer was just enormously beneficial. And you know, Caroline deals with lots of parents who are at that point where their kids are not talking to them or are just aggressive and difficult all the time or not. They're just retreating into a shell. So, I'm hoping that maybe having this collaborative creative venture and again their kids can be sort of involved as and as little or as more as they would like to be will be helpful and might help build those relationships, you know, cuz I think I kind of love the way we live our lives now through our smartphones and so text messages, it's got Jim's kind of Snapchat videos or text messaging and it's got from the text messaging of the early Nokia years when I was in touch with Jim's dad to obviously the kind of messaging around Apple and the switches to voice because Jim loves a voice note which they can go on for days his voice notes. Um, so yes, I think that that all of that kind of is fantastic creative material that you've got in your phone for a really good film that feels quite contemporary as well because I didn't want to make a documentary that was like a lot of sitdown boring interview because I think a lot of documentaries can be quite traditional and a bit earnest. So it hopefully has that lightness of touch.

So, some of our listeners might be wanting to make Instagram Reels or content videos about their cancer experience, whether it's to help them through it or whether it's to share stuff on WhatsApp with their friends. Um, do you have any tips, any pointers as to how people can start filming with their phones?

Well, I mean like immediately one thing about if you would have felt, oh, I can't film in a hospital or a cancer ward, you really can because if it's in selfie mode, you just need to be mindful of you're not filming people without their consent. Uh, but like I say, if you're shooting with a smartphone really and you and you tell, you know, I would tell the breast cancer nurses, you know, I'm making a film about my whole cancer journey and like really that will probably be very easy and fine.

I have to say I'm always really nervous of even taking a photo in hospital like for example sometimes I think it would be really amazing to have a photo of me going into the CT scanner or even a video as you said but I'm always too scared to ask anyone I think I just feel I always feel like I'm asking people too much literally I nobody ever said no and I asked a lot of them I really did and nobody ever said no so I think I'd take that as a sign. Maybe I'll do one for my CT scan next week.

Yeah, if you're in selfie mode, it's you filming you and you give consent for that.

The other thing is selfie mode. So, when people do talking to camera, I am so awkward about that. Particularly, I wouldn't mind it if I was sat on my own in a room filming myself talking to my phone, but people who do it whilst they're walking down the street, I just think how I would just feel so silly walking down the street talking into my phone in selfie mode. Is there a way to get around the sort of awkwardness and nerves of that?

It's funny. I was listening to a Radio 4 program which was about the differences between generation Z like Jim's age and millennials. And I hadn't heard that term, but it's called the Millennium Pause. So, Generation X's take the piss out of people who are 30, 40 something because they're not used to just videoing straight into it and so they have a little is it on? Is it on? Am I working? Um, and I'm definitely guilty of that. But, you know, you can cut that out. And the other great tool I've come across is Cap Cut. So, Jim's taught himself to edit on Cap Cut.

And that's is that an app?

That's like an edit app that you can just get. So you can get rid of them if you've got the millennium pause and like a really embarrassing is it on what am I doing? You can cut it out very easily now on an edit app.

And finally on that point, should you get a little one of those little handheld mic, tiny little mics that you see people with? Because for example, if you you're holding your phone in selfie mode in the street outside the hospital and there's loads of traffic coming past and it's really noisy, that's just going to be loads of background noise, isn't it?

So, if you're filming like that, like in a café or in a kind of roadside, you can get these little road smart lab microphones that are only about 40 quid that go into your smartphone and that will just instantly give you decent directional sound.

Yeah.

But actually your on camera mic if you're in a chemo bay or do you know what I mean? Like as long as there's not crazy amounts of other voices around you, you would be probably okay. And so Motherboard has got a real mix of sometimes rougher sound because I wanted to be more spontaneous. In fact, Jim didn't even like it at home if I said can we put the radio mics on and it was faff. So you'd be surprised. I mean again AI where it is got its uses is you can use AI now to clean up sound. And again very very successfully. So I wouldn't overthink it because I think also sometimes you create barriers to being creative with extra tech. So I think you can be quite spontaneous and low tech and you can clean it up after the event and it'll be fine. What do you think it is about creativity that makes you happy? I think particularly in relation to being creative around the really difficult stuff in life for me for the going through cancer is that it gives you some sense of agency and perspective and when you're going through a chronic illness you don't have much agency you know you have to lean into the lack of control and the lack of knowing and so I think you know there was a real turning point for me when I had a fantastic woman oncologist and I asked her if they kept the cancer cells and obviously they do and I said could I film them and she thought it was a bit of a bonkers idea but I was happily did that and so my cancer cells end up I filmed them and then I got pictures of them and I animate them and so they're in Motherboard and I that process of I was still mid treatment and looking down the barrel of a microscope to cells that I know could potentially kill me or come back, but they were so beautiful. And just that looking down the barrel of a microscope or through a lens for me and writing is the the equivalent of just gives me a sense of having some kind of agency.

Yeah.

And it helps.

How are you now in terms of the breast cancer?

Well, good in that I have a yearly mammogram and each year I'm now eight years on. Still on tamoxifen. I'm on it for another couple of years cuz I had to do it for 10 years cuz I had a kind of higher grade and doing better. You know, that's physically how I am. And then the physically how I am, I'm so understanding of how lucky I am in that I'm not going through active treatments in that difficult way, but definitely left with a lot of the fallout mentally.

You mean mentally and physically?

So even physically, you know, I had a chemically induced menopause. I made a decision actually to go on to HRT in this last couple years, but obviously that's a very difficult decision to make when you've had breast cancer before. I had to do a lot of research. I'm still not sure if it was the right decision. So physically still have some of those issues and mentally had found it very difficult and you know listening to a lot of the amazing episodes on Breast Cancer Now over the last few days hearing how many other women feel it as a as a post-traumatic stress. That you're never the same again. And I have an amazing counsellor who specializes in people dealing with chronic illness or cancer and she's been really good for me in definitely I feel like there's been times when I've obsessed too much about a possibility of a reoccurrence or almost over investigated things or under investigated things. So, you know, I had a really bad lower back pain and I let it go for about four or five months just obsessing and it was an inflamed coccyx, you know, but I really was so frightened. I didn't want to go down that road and did in the end.

So, where can people watch your brilliant film Motherboard?

So, you can watch it on streaming services and you can find out which ones on my website which is motherboard film website. I've got an Instagram account and also Tull Stories are our distributor and they will have all the details as well.

Brilliant. And we've put all the links in the show notes so people can just click straight on through and it is an absolutely brilliant film. I loved watching it. Loved watching your 20 years of motherhood. And are you still filming? Are you still continuing?

The latest project I'm doing is a podcast series idea. So, it's going to be audio recording for the minute. But yeah, I am still with the smartphone. I'm definitely still filming like once or twice a week. So yes, I'm building another archive. Hopefully have another feature film in the next three or four years.

I'd like to finish with the questions we ask everyone on this podcast. In just one sentence, if the listener takes one thing away from this episode, what would you like it to be?

That you can get through the tough times. You know, you can embrace them and meet them head on, but you can get through them.

Fantastic. Well, Victoria, thank you so much for coming on the podcast and sharing all of your wonderful stories with us.

Thank you. Thank you for having me.

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