Off Air... with Jane and Fi - OFF AIR...EXTRA (with Cancer Research UK)

Episode Date: September 19, 2025

In this special bonus episode brought to you by Cancer Research UK, Jane and Fi speak to Clara, who was diagnosed with blood cancer as a child. Clara tells us how her experiences in hospital inspired her to become a children's nurse. Get more information at:Cancer Research UK for Children & Young People: https://www.cancerresearchuk.org/children-and-young-people?utm_source=newsuk&utm_medium=podcast&utm_campaign=ccam2025About cancer - children's cancers https://www.cancerresearchuk.org/childrens-cancer Please note, there are discussions of childhood cancer diagnosis and treatment throughout. Cancer Research UK is a registered charity in England and Wales (1089464), Scotland (SC041666), the Isle of Man (1103) and Jersey (247). #ad  If you want to contact the show to ask a question and get involved in the conversation then please email us: [e-mail]  Follow us on Instagram! @janeandfi  Podcast Producer: Eve Salusbury Executive Producer: Rosie Cutler Hosted on Acast. See acast.com/privacy for more information.

You are very welcome to this edition of Offair, made possible by Cancer Research UK. September is Childhood Cancer Awareness Month. Now, this is a chance for people, charities and organisations across the world to get together and put children's and young people's cancers in the spotlight. The progress made will be celebrated, but we'll also be discussing why there's still a long way to go. We've come a long way. Children's cancer survival has more than doubled since the 1970s in the UK,

but it's still the leading cause of death by disease in children and young people over the age of one. And cancer in children and young people really isn't the same as cancer in adults, so it needs a different kind of approach. Today we're going to be speaking to Clara, who was diagnosed with cancer as a child, about her experiences and the work that Cancer Research UK does. So, Clara, you were diagnosed with blood cancer when you were four. Can you tell us a little bit about what happened to you then? Yeah, of course. So I was four years old, normal, happy, four-year-old child, had a few allergies, nothing particularly worrying. And it got to the point when my parents started worrying a little bit about the fact I was getting some bruises and I was getting quite pale.

So they took me to the doctor, as you do, no one really suspects in anything malicious or really terrible. I did some blood tests, everything came back relatively normal, so we changed my diet. And I went on like that for a little while. And then nothing was improving, so they were like, maybe we should look into what's going on here a little bit deeper. And by this point, I think the word cancer must have been brought up to my parents to prepare them for the potential, that there was something more serious going on. And the results came back and it was a Friday night and everything was fine.

So my parents went out to celebrate. They got a babysitter. Big relief for them. My brother and I were left at home. Saturday morning, they got a call from the hospital. The consultant who usually looks at the blood results had been away. And as a union member of staff hadn't noticed that actually it looked as though I had something more sinister going on in my blood. And by Monday morning, I was having a blood transfusion and I'd been diagnosed with acute mild leukemia. And I didn't leave hospital for nearly six months after that. Had you started school? No, I was four. It was the summer before school, so I didn't go into school. I was in hospital from then on for quite a long time. And do you remember how it felt from your own perspective?

Yeah, I distinctly remember the day that I went into hospital and I don't know what I was wearing. And I don't know how I still have those memories. And I think the interesting thing is how memories are formed, aren't they, around specific events and you carry them with you. And that day is imprinted in my mind because my neighbour drove us. to the Royal London Hospital because I couldn't get on the train I was too sick and my mum was leaving my small brother behind

and I was sat in the back seat of my neighbour's car like looking over the back seat staring at my parents saying goodbye and my brother was screaming because my mum was telling him that she might not be back

for a while I was wearing a yellow sundress it was hot it was June I was feeling really rubbish and I didn't know where I was going but that was the last time I saw home for a really long time

and when you say that you were in hospital for a while. How long were you in hospital? So my treatment lasted almost six months and for the majority of that time I was in isolation. So I was really in hospital for months at a time with small breaks over the weekend, sometimes to go home. A lot of the time my dad and my brother couldn't even visit because of the risk of infection. So the treatment for the type of cancer I had is extremely aggressive. So while for a lot of blood cancer, especially in children, you can have outpatient treatment. That was not a possibility for me. I would. was started on aggressive chemo from pretty much day one.

The doctor said if I hadn't started chemo within two weeks, I might not have survived. So it was really the end of what they could be doing already. So yeah, I lived in this one room in the Royal London Hospital, staring at the helipad watching the emergency planes come in because that was my form of entertainment. So did you actually feel iller once the treatment had started than you'd felt before? Yeah. Yeah.

So I couldn't really understand what was happening. And I think this is something interesting about when you're a small child and you're diagnosed with cancer. And it's definitely something I've reflected on as I've grown up. And obviously treatment and various aspects of my health have come up and been a problem since. So I've been faced again with the reality of being in hospital and having surgeries and having procedures. And I realized back then how to me, I didn't get it. I didn't understand I was sick. I knew I was unwell.

But I'd made the kind of my mind. reality was the doctors had made me sick. They were the problem. They were making me unwell and I was very angry about it. And it took a long time for me to understand that that wasn't the reason I was unwell. There was something else going on. But to me it was the stuff hanging in the bag going into me that made me unwell. What does a four-year-old do all day in hospital for that length of time? It really depends on the day and how you're feeling. So for me it could be anything from dancing with the nurses, sitting at the nurse's station. I think when you're that age, you bond very quickly to the people around you.

I didn't have a social life, so the nurses were my social life. A lot of the children I made friends with on the wards passed away or moved on to other places or left the hospital. I'd say a large number of the children I made friends with didn't survive. So you either lie and bed feeling unwell, which is a reality a lot of the time, we make your own fun. So we did trick-or-treating on Halloween, knocking on your own. people's doors and waving through the isolation windows and getting the nurses to take

sweets in and out because we weren't allowed in. We did dance parties in the corridor when we were well enough. There was a playroom. We'd go-kart races when we had enough energy. Yeah, something that you're not prepared for when you get really, really sick is that you can't really run anymore or walk anymore. So it's kind of like being in a bad dream. You feel like you're running through treacle. That's the feeling. It took a long time to get back. You were just too little to understand at the time about the impact on the rest of your family, but you probably understand now, don't you? It still comes out every day, I think, the impact, the long-term impact of having such a serious illness and having those conversations with your parents and them not wanting to burden you, but equally now as adults where you can have mature conversations about what the reality was to have something like that going on in the family. I think my parents, you know, if you get on with it when you're a parent, you love your child, you'll do it.

wherever you can, but the most difficult is for the siblings. And trying to, he is younger than me. So that was particularly hard because it was very hard for my parents to explain why mummy and sister didn't come home and why he wasn't allowed to see us. He also got chicken pox during that time, which obviously many couldn't come and see us for ages. When were you given the all clear and how did you then return to a more normal childhood? So that's really interesting with a lot of cancers and with the AML I had. So no one could really, none of the doctors could really understand what the genetic makeup of my AML was.

So there was a lot of backwards and forwards with what level of treatment I would need. So as a result, although my treatment ended after six months, so my chemotherapy ended, I wasn't given the all clear after five years. So I was going back really regularly for tests, lumber punctures. I kept my central line in for a really long time. It's the tube that goes into your heart directly, which obviously makes you look different and feel weird. So I didn't have hair for a really long time,

had a nose tube in for feeding. Some of my closest friends that I met back then thought I was an alien because I looked really strange and different to everybody else. So although I wasn't on treatment anymore, I still stood out for several years. And then after five years, I was told that I was officially in the all clear.

and ever since then, I think my parents were breathing a bit easier. And you started school after... Actually, I was homeschooled. Right. So I ended up missing a lot of school. My parents at home educated me and my brother for a long time and then I went to school when I was older, so secondary school age. And did other people identify you,

or do you identify yourself as Clara, the person who's been ill? Hmm. I think I did for a long time. It was hard to hide initially and I also was impacted by quite a lot of side effects I think as a young person growing up so I had chronic pain which I really struggled with because of some of the treatment

that had gone directly into my bones in my back and I also had several other things going on so for a while there were things I couldn't do so I was struggling to keep up with my peers so that was definitely an aspect of growing up that I had to face as I've got older I've been able to distinguish a little bit. But it's also part of what made me me and choose my career choice and pretty much plan so much of what I did as an adult. So there's also something about owning what's happened

to you. And it's not for everybody and it's not the path everyone who's been diagnosed with a serious illness chooses to take. So tell us a bit about your choice of career and what you now do. Yeah, absolutely. So I did say that I blamed everybody in the hospital for making me feel well but the thing was the nurses were incredible. They were the people that were there with the in the middle of the night when my mum just needed a break because she was there with me 24 hours a day. They became my friends, the people I wanted to go back and visit to the point that my parents thought I had an unhealthy obsession with nurses probably because they were these people that were so kind and lovely. And I guess after a while I realised there was nothing else

I could imagine myself being but a children's nurse. So I trained to be a children's nurse in South Hampton, went on to work at Great Ormond Street, but also recognised my own kind of privilege have been born into a place where there's research and there's the possibility for treatment. My cancer is incurable in many parts of the world. So I've also gone into humanitarian work as well, trying to bring some health equality to other people and populations around the world. So can I just ask you about that? When you find yourself in a different part of the world and you've been to Syria, you've been to,

Ukraine. How do you feel when you see healthcare systems that cannot, through no fault of their own, give the kind of care to children that you were able to receive here? I think it just reminds me that research is the reason I'm alive and it's so many people are alive because of research and because people donate money and support organisations like Cancer Research UK and other charities where they put so much time and energy into finding cures and kinder treatments for children and adults alike. But as a child who's been impacted by the aggressive treatment I had, kind of treatments are also essential for longevity and for survival of people with cancer. So it's hard to be faced with children in particular who haven't been offered the same

opportunities as I have, but motivates me to continue working and supporting as much as I can. projects. You mentioned that some of the treatments were aggressive and we don't want to go into too much detail to upset people but because you were so tiny but you they really were I mean I've never had any form of chemotherapy so I suppose I if I'm honest I do struggle to understand quite what that means and I know you were very young and you might not but mercifully you might not be able to remember it all but it was I gather it was pretty grim yeah um so I mean I guess I can describe a little bit what the treatment felt like from my perspective. So I was on really high doses of chemotherapy that essentially strip your mucous membranes. So I had, well, it attacks fast-growing

cells. Essentially, that's the point of chemotherapy. But that means your body is also impacted. And your natural structures are also damaged by the drugs. So I had obviously hair loss, but also entire intestinal tract was damaged by the chemotherapy. So everything from my mouth full of ulcers, impossible to eat. So I had a nose tube down my throat, almost impossible to swallow, into my stomach, excruciating pain all the way through the digestional tract. I also had extreme nerve damage and pain from some of the treatments that went directly into my, they like inject into your lower back. So it's not through a tube, it's just injected right into you, which is really brutal and extremely painful in the aftermath and the effects of that can linger for a long

time. I think really the pain, the inability to eat, I was desperate to eat, but nothing tasted right. No one really talks about how your taste changes. And I remember my parents, extremely healthy parents want us to eat organic food and vegetables all the time, suddenly being desperate for me to eat a donut, a crisp, anything to make me eat. Exactly. Just go for it. Have whatever you want. And I was thinking, wow, this is my moment. And I couldn't eat any of it. And these simple things really impact you when you're a kid. So, yeah, from a pain perspective, excruciating, you also retain quite a lot of fluid and it becomes very uncomfortable. And you put on weight, lose weight. It's a constant fluctuation cycle. And of course, the surgeries as well. And coming around from having things taken in, things taken out. Yeah. And do you now have limitations on your own life because of what happened to you as a child in terms of your health now? So I'm really lucky enough to be essentially monitored for the rest of my life by a really amazing late effects team here in London. So I will always have an oncologist to talk to. The nature of my treatment and the nature of my cancer is that they want to monitor me forever.

So on one hand, I'm never really going to shake off this diagnosis and this thing that happened to me. but on the other hand, I've always got someone to talk to you about a new concern. In general, the main problem for me is my high risk of heart failure. So something that is often not spoken about is that actually your risk of heart failure can increase after some certain medications, especially for this type of cancer. So because of the massive doses I had, I'm at real high risk of heart failure, so I'm monitored very, very regularly. There's certain activities I can't do, and obviously it's a worry.

And if I ever get pregnant, that's also something I have to think about, the stress of that on my heart. In general, other than that, I still struggle with nerve pain in my legs, which really restricted me for a long time. But I've got the support now and I'm managing a lot better. But other than that, I'm doing all right. And when you are in your professional life, how much of this and what you've been through impacts on the way you conduct yourself, would you say? massively and I think it can be exhausting sometimes and it's about finding a balance of not tapping too much into my own experiences but also using them to make a child's life or a family's life better and something I love doing when I'm working with patients is remembering how it felt

to be that child and really really reminding myself how big the small things actually matter so for me the hardest part of my day often. All of this stuff happening to me in the hardest part was having a dressing changed because the pain, your skin is so sensitive and having your dressing changed is excruciating and traumatising. So if it means I sit an hour with a child and give them the control to change their own dressing,

I know the impact that's going to have on that child going forward and the control they have over a pretty uncontrollable situation that they're in. Even though you're 28 now, so your diagnosis was 24 years ago, do you find that when you're in situations like that, you are still constantly learning a bit about what happened to you in what you see happening to other children? Yeah, that's a really interesting question, actually.

Learning or just reflecting maybe more. It's something I go home with at the end of the day and I think to myself, wow, okay, about myself but also about my family. And I think sometimes it's the parents that really get to me now. Now that I'm older and I've really processed what's happened to me pretty much, I'd say, and thought about it and talked about it. But my parents haven't had the same opportunity or my brother hasn't had the same opportunity. So I'd say it's more reflecting and learning from seeing my patient's parents.

That's a big part of it now for me. Quite often siblings have, shall we say, let's just be honest, challenging relationships with each other. Do you think in a way that your brother, well, you'll have to tell us, was he robbed of the opportunity to be really annoying to you? No. No, no, he's still done it. Okay, good. We had a very normal relationship.

We loved each other and hate each other in equal amounts growing up. No, I think my parents did a fantastic job of keeping things as normal as possible and I hope not making me the special child. I think that's really important. Obviously, a lot was happening to me and a lot was sending. around me for a long time. But I was never given the benefit of the doubt in the situations with my brother at least because it was really hard for him, really hard.

Well, what an absolute pleasure to meet you. What an amazing young woman you are. Thank you very much indeed for talking to us. If you want to know more about Childhood Cancer Awareness Month, you can visit cruk.org forward slash children and young people. Or you can visit your local Cancer Research UK shop and make sure you do it during this child. Childhood Cancer Awareness Month.

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