Running...while my son is on chemo

[Music] Hello everyone and welcome to the Why Run Podcast. Each episode I talked to a different guest about how running has helped them through some of life's more challenging times. So whatever's going on in your life at the moment, good or bad, I hope that you'll be inspired to put on your trainers and hit the road running. [Music] Hello everyone and welcome back to the latest episode of Why Run. Hope you're all doing okay. My update is that I've decided to join Running Group. Since I started running three or so years ago, I've nearly always run on my own, but it also work on my own. And so I've decided to take the advice of so many of my guests and sign up to a club for a bit of chat, encouragement and shared running. And I've also made a new year's resolution to start doing more park runs. And I've even ordered a wristband with my number on it to prove my commitment. So I'll let you know how I get on. Anyway, enough of me and now to my latest guest on this episode of Why Run, I talked to Jen, who started running regularly a few years ago after completing the catch to 5k with the running group. But it was at the end of 2021 though that life took a dramatic turn for Jen and her family. After months of tests, Jen's 5-year-old son, Eshan, was diagnosed with a chromosome disorder, neurofibromatosis or NF1. The reason that Jen and her husband had taken Eshan for tests was because he was losing his sight. And it turns out that their little boy had a tumor on his optic nerve. Having NF1 means that Eshan will be susceptible to internal tumors throughout his life. Facing such a diagnosis has been heartbreaking. Jen says it has been her running through this period that has given her the strength. And she says that without it, she would be in a very dark place today. Whilst Eshan is having chemo, Jen is committed to run 100k a month. She also ran the Great North Run last year, raising £5,000 for her son's oncology ward. Jen started off by telling me how she first got into running. No, I know a lot of people that go running because I'm in a running group, not like a competitive running group, it's mainly lots of mums and lots of people that are running in this spare time having a chat. But we all seem to have one thing in common, is that none of us were particularly sporty at school. So I've never had it in me to be. So I've never really been interested in sport. In fact, I used to look at people running and think, "What the hell are they doing? How are they smiling?" It just used to be something I thought I couldn't do. And the very first time I went to try to do a run was with one of my friends. And she said, "Oh, do you want to do a park run with me?" And I was like, "Yeah, do a park run." But with no training, no preparation, I'd set out to do this 5k with her. And of course, I couldn't do it because I hadn't built up to it. So I just felt like I failed miserably at that. But looking back, I had an eight-month-old baby. I'd never gone running. So of course, I wasn't going to suddenly do this 5k. And I remember like, her half-inch-like walk with me and I just felt, "Oh my god, this is awful." So I didn't try again running for a long time after that. And then I moved from Bristol to Derby. And one of the first things I did was join a running group. So the couch to 5k. And that was about four years ago. I just plotted along, but it doesn't really do much. It was always at the back. Always just plotting along, just having a chat. And what was your motivation for going to the running club when you first moved? Was it like meet people? Was it a so-more of a social thing? Or what was the reason? Yeah, I think so. A social thing. And I just thought, I just had that kind of niggling feeling about that park run with my friend. I saw something advertised about couch to 5k. And I thought, "Oh, I'm going to do it." It's like something I thought, "I just need to do that. I can do that." So I did it properly. So I did the couch to 5k with a group, with the running group. And when every week. And then we all got to 5k together. It was a minute's of shared sense of achievement, isn't it? Yeah, and it's a really, really lovely running group. They're really supportive. So then when I had a little bit of time out, when I was pregnant and had my daughter, I did another couch to 5k. But it was a lockdown couch to 5k. So we were all kind of saying how we were doing digitally and having a little group. Week 5, I think, is the hideous one on couch to 5k. I had to do that about, I don't know how many weeks. I just did that for about a minute. I can relate to that. I can remember getting stuck at week 5 and having to repeat it several times. Yes. Wow, did you? It's a real jump that week. Yeah, but we just kept going and then comparing how we were getting on online. And then, yeah, just carried on running really from lockdown. But not really doing anything much of 5k. And then my son got poorly. And then I feel like that was my next attempt at running. But what all three things haven't common as I think whenever I felt like things are not in my control, like moving to a new area or having a baby in lockdown. And then again, when my son was ill, I didn't really use it as a conscious decision. But I look back at it now and I realise I've gone to running on all these occasions in some way or another. And when you go for a run, how does that make you feel? What is it that helps you? It's something about, I think, being a man with two young children. It's leaving the house and nobody wanting anything from me. And I'm actually don't feel like there's any other time, quite like that. So it's your me time, really. Yeah. And the kids get used to it. They know when mum is going on a run, they know my trainers and my leggings. They kind of, I just feel like it's kind of your respected time as well. It's kind of untouchable time. No one can come along with you or anything. Yeah. So, you know, if I'm doing something now, like kids want to come and then it turns into a different type of outing. Very much so when you've got small children. Yeah. My children are much older now. But I can remember that feeling of just wanting to go at your own pace. But when you've got little ones, you always have to be slowing down, don't you? I know. I did actually have a little run, a barely call it a run at the weekend and everyone their bikes. Oh, that's impressive. Yeah. So how old are your children now? So, E-Shan has just 10-6. And Aila is 2-3. And you're working as well? You said you've got like work meetings and things. I mean, yeah. Yeah, so I work three days a week. I've recently gone back to work. I had about seven months off when E-Shan was very poorly. So he's in hospital a lot. But yeah, I've recently gone back. So I work in a college. Oh my god, Jen, you've got a hell of a lot on your plate that you're juggling. Yeah. Does feel like that. So tell me about what's happened with E-Shan's health in recent times. Um, well, it's a difficult time at the moment because it's coming up to a year. So it was about a year ago. Many things weren't going right for E-Shan. And it first started with his teacher noticing some difficulties with his eyesight. So that was the first indication we had. So we took him to the opticians. And there was a really frustrating time. I have say of about two months where he was going to the opticians. They even gave him glasses. He got referred to an eye hospital. There's lots of appointments there. We're waiting for referrals. But nothing was ever kind of established with these eye appointments. And even quite specialized appointments at the hospital. So it was Christmas day. He was really struggling. His eyesight suddenly got even worse, even in a matter of a week. So when I picked him up from school on last day of term, he couldn't see me waiting for him. And then on Christmas day, I remember asking him what some of his presents were. And he couldn't see them. Oh my goodness. So it was very, very sudden. But I was very confusing because I was still taking the advice of professionals. And they were saying, okay, we'll have a come and bring him in again. And we'll do some more tests. And I remember them saying they were going to bring him in after New Years. But this was Christmas. I was like, I can't leave it. So I just took him to A&A. And I said, I'm not leaving until somebody. Yeah. It helps me because something is very, very wrong. So he was then given an emergency MRI at Derby Hospital. Through that MRI, they found that he's got a tumor on his optic nerve in his brain. And then after they found, they did some other tests and they did some checks on his body. And they told me he had a condition called Neurovibromythosis Type 1. I've never heard of this before, but it's a condition that he was born with and it's genetic. And part of that condition can cause internal tumors on your body. And only very small percentage, a 10% of those with Neurovibromythosis, which is called NF1 for short, will develop a tumor on their optic pathway. So his optic pathway, that is what sends the messages from his brain to his eyes. So when he was going for his eye checks, there's nothing physically wrong with his eyes, but it was the pathway in between the brain and the eyes. Yeah. As a parent. and I can only imagine what it must have felt like at that time. I mean, there must have been so much fear and there's the unknown. It was really, really scary and you know, there's lots of different emotions going through it. But one thing I think of now is that I should never have heard of NF1 through an emergency MRI. That's something that's very clear that E-Shan has. Now I know what it is. So one of the big signals for that. And you know, I do want to raise awareness because it is. Even though it's rare, it's one of the most common genetic disorders. So E-Shan has on his back what look like birthmarks, but they're flatter than birthmarks. So they're like round little patches on his back, which when he was born, we asked about. And they said they're birthmarks. They're not birthmarks. So if that had been checked, we would have known about his NF1. And then he would, you know, any changes in life would have alerted for a MRI scan sooner than it had. So there's all these feelings about it. And you know, sometimes I feel guilty as a mum because I didn't know what I just assumed there was birthmarks. But I don't know. But how could you. I mean, there's no reason on earth why you would. And like you say, when he was born, you raised awareness and you were told that it was fine. Yeah. So what happened next? He got transferred to Nottingham Hospital, where that's like a specialist centre. So they have nurses and doctors there that know about NF. And it's also a main site for an oncology. So he's on an onc. He went on an oncology ward with other children that have brain tumors or were going through chemotherapy. And he stayed there for a week and he had to have surgeries. We had to have a port fitted under his skin. He had just turned five at this point. And also there was still restrictions. So it was just one parent at a time. So we were just constantly. One of us going into the hospital. Were you able to stay with him? Yeah. So one parent could stay with him at a time. I think he was ever even more than a week. It's such like a weird time. Because he was in Derby and then he was in Nottingham and then he had to come home for a bit. It was a period of time. And we were waiting for his consultant to tell us what we already suspected. Because they're teaming on this gun. He had a brain tumor. He has NF1. And he had a port fitted under his skin because we were told that he needs 18 men. So what is a port? So the port is what the chemotherapy is given to him. So it just allows him to do normal things. So it's attached under his skin. Yeah, so they said he needed 18 men of chemotherapy and had to start straight away. At this point, his eyesight had got so bad he couldn't see anything in front of him. He was. And then soon after, as he was registered, I was splined so we couldn't see anything. It lost all his sight in a matter of weeks. Oh, Jen, that's your little boy. Yeah. There's been. How far? No, no, it's fine. It's just remembering it all. It was a lot to take in. At that point, I thought medicine would make his eyesight better. And when I was told it wasn't going to, that was just truly devastating for me to think just had this atypical, you know, I don't want to say normal, but it felt like a normal family, doing normal things and something I just thought, 'Oh, my son is going to need adaptations or niss at in the FSO.' Yeah. Her end of time and just. And how far is notting him between notting him in Derby? I mean, just managing that with a family and, you know, having to do those commutes and maybe a little girl as well to look after that. I mean, it's a lot to be managing. Yeah, luckily we aren't actually too far. So where we live, we live in between notting him and Derby. But, you know what, there's so many families that I've met that have actually traveling hours to notting them hospital. They could be traveling like three hours because it is one of the most specialist centres. You know, there's a few others around the country, but. So I haven't actually been too eventous for us with the travelling. I mean, the juggling. Yeah, that is something else because it was. One of us would be with E. Chan, but then the other one would have to arrive at a hospital but we both weren't allowed in the ward. So we couldn't even greet together if you like. So we were just in the corridor passing by, quick hand over, because E. Chan was scared by himself. He didn't know what's going on. We always needed one of us with him. We didn't really have time together during that time, because then he ever wanted to go back to Aila. So yeah, a lot of juggling and there's still as a juggle. I look back pre-diagnosis to this and I used to think I had a juggle then. I used to go to school and work. But I would love to have those stresses again, those normal stresses. But he's been, I have to say, exceptionally brave. There's nobody quite like E. Chan. He is just. He makes friends with every single person. He means he doesn't stop talking. So he's back at school now. Yeah. Is he in year one? Yeah. So this started in his first term of reception when he first started school, which I think was another reason why everything got caught up. So he became a little bit anxious when he started school. It was very unusual for him because he's not an anxious little boy. He's very, very confident, but I think looking back, there was all this going on and children don't tell you things. So when he started losing his eyesight, he didn't tell me. He didn't tell me you couldn't see things. When I rang the hospital to take him to where he needed. They were asking him, "What can you see?" And he was saying he could see lights in his eyes and this. And he never told me that and I'd never asked him that. It's just the way children interpret the world. It's so different. Yeah. They just get on with it really. My youngest daughter has got really bad eyesight and I didn't pick up on it. Just because the only sign was that she used to go and stand right in front of the telly, like six inches from the screen. Yeah. When she was little. And because she managed with the rest of life, I didn't see it. And it was actually her child, my daughter, who said, "Have you got rubies eyes tested?" And she's wear a very strong prescription glasses. Yes. And I remember being told at the time that at that age, the brain is so malleable that their little minds can override things. And in a home environment it's so hard to pick up as well because it's like running up and down the stairs, never bumping into anything. Made up at home. Yeah. But if I would take him somewhere else, then he wouldn't be able to cope. Yeah. I mean, think that I'm different now. You know, he has regained some eyesight. So he can't see at all out of his left eye. That's the optic nerve is damaged and that will never be repaired. But in his right eye, they thought the optic nerve is damaged. But it was actually very swollen. And once that swelling went down, they gave him some steroid. And once the treatment started, he did regain some eyesight, which is nothing short of a miracle to be honest because I think as consultants were hugely surprised by that because we were told you would be blind as a spectrum. And I've learned a lot about it. But when you're registered, you're either registered as partially sighted or severely sighted severely. And the severe end is the same as blind. So it's complicated. Yeah. The extremity of what you were going through is just overwhelming. So I assume at this time you weren't running? Yeah. It's hard to remember, but I remember the first, I remember the first when I did. And that's why I knew I had to keep blending. It was when he was in hospital, so it was very early on. And my friend was looking after my daughter. And my daughter's really clingy. And she's only interested in doing. And I was like, no one, she is not going to let anybody look after her. But she did and she really, really bonded well with my van becky and she was looking after her. And I'd just come back from the hospital. And I remember looking at them thinking, oh, what do you mind if I went for a quick ride? And they were like, yeah, you should. So I just went for a run. And in the midst of all of this, I just needed to go. And I think I did five or six K, but oh my god, I just felt like it was a massive pause bet. And I just knew that that's what I needed to do. Yeah. And I can't remember what kind of running I did then, but I remember any opportunity that I could. I would just weren't even though I was exhausted. I'd had no sleep. I was full of worry. I still needed to be outside. I think also when you're going through extreme medical treatments and hospitals, they're the most claustrophobic environments with all that sort of recycled air and lack of windows. I can imagine just getting out and having some fresh air and a chance to breathe must have. Yeah. Help you somewhere. This way, because you don't really know how you're going to react in times like that. I didn't know what was happening. The revision, whether things, things were bad, but I didn't even know if it was even going to get anywhere. That I would think to myself that I would. Of trust completely broken down. However, I didn't. And so I think as a man, we can surprise yourself with having some strength that you find from somewhere to keep going and to keep looking at a family really. And I do think running has given me. that strength, I think if I hadn't done it, I would have been in a really dark place without her. - So tell me a bit more about how things are now, 'cause this is how I found you on Instagram was about you're running that you're doing now in terms of that you're gonna keep running while Eishan's having his chemo. So yeah, tell me about how that came about. - Well, I was running and then things got a bit easier managing to them. So I had Eishan at home with me and then he went back to school at some point. I was going to school with him and then, and then he had a TA and he would go to school for a couple of hours when he felt well enough and it was during those times I thought, well, I'm gonna go running. Any opportunity I was out the door running and I realised I was running quite a lot. So I signed up for the great North Run. Never run, like I said, or don't even ever run like I've I gave before. Nothing significant. So that was a big challenge for me and I know, you know, other people have done like marvin and things like that. But the great North Run was very significant for me to get through. - So at this point, that's the main, to have faries is it? - It's half a marathon. So that's 13 miles about 20, 20, 20, I don't know. I can't remember that. Yeah, it's half a marathon. - And it's hilly. - Yeah. Yeah. I was trying to get, I was trying to run up a few hills. There's this massive hill right by Eishan's school. It's called Hotwell Hill. And I was like, right, I'm taking on Hotwell Hill today. I'd get, I'm getting used to running up hills. So I'd just drop them off of his two hours at school and not go home for that point. I'd just be like, run, go for walk, run again. And yeah, so I was building up quite a bit of my literature. Then I thought to myself, I'm going to mean to do a hundred K every month while he's on treatment for 18 months because I work well with having a challenge. If I set myself to do something, it helps me. So it's a reason to do it. It's a reason to keep getting out running. And I know running is something important. It'll like, it's something if I don't run. I'm not going to get through this time in the same way. So yeah, so I'm just going to do a hundred K each month. And I set up my Instagram account because I wanted to document it and take pictures of what I'm running and what I see when I run. And it's not really for anyone. I mean, people can, people can look at it and people can join my Instagram. But it's mainly just to document it and keep myself motivated and help other people as well because as I said, I'm not in it for running my fastest personal best or anything like that. I don't put anything on there about how fast I've done something in all quick or anything that's not what it's about. It's about getting out there. So Isha now has chemo every four weeks. Is that right? Take us three a month. Yeah. So we had this intense phase of chemo and then that, the chemo reduced. So now we ask three weeks of chemo. So we ask free first days in a row and then he has a break for three weeks and then he asks free weeks again. And that will continue until the summer when he finishes. And then, okay. So does he go into hospital for chemo? What happens? Yeah, so it goes into hospital for the chemo. So on the first, on week one, as I say, has a double drug. So he has vincristine and carboplatin and that's the worst thing in terms of feeling tired and having side effects. And then the next two, it's reduced. So it just has the vincristine, just the one drug. So the first one he has to get hooked up to, like he calls it a robot, Bruno, Bruno the robot. It gets hooked up to Bruno the robot. And then he has one of the other drugs inserted into his stomach in Fouhe's like a poor boy. How does he cope with that? And how do you cope with that? 'Cause I mean, chemo's a pretty evil treatment in terms of its side effect. I mean, does he accept it? Yeah, so when he first started having chemo, he was really anxious, really upset. We had times in the hospital where he would be crying and very anxious and it was very distressing for everybody. And the nurses told me he will get used to this. I just didn't really believe him. I thought, no, my he's shunned won't get used to this. But he has, he's actually, he has got used to it, which is just amazing, really. He's just, it is amazing, especially when you think that the treatment is for his long-term benefit. And so it's not something that he can feel or experience the benefits of straight away. It is quite remarkable. It's really difficult to comprehend. So I haven't really explained to him how long is chemo's going to continue for because when it was 18 months, he was only five years old. That's a big, actually big chunk of his life. So, but when we get to January, we can start counting down a bit because it will be six months left. Yeah, he copes, he does cope with it quite well, but it all has to be on his terms. So he's very much in control of the situation. So he only likes to have one nurse, if there's two men, he doesn't, he doesn't know how back he's like, you, you, you need to go away and I just want this person. Yeah. And then he does all these little things that help him be in control. So he tells the nurse when he's ready for them to insert and the drug into his port. He does like this little dinosaur roar. Just tell him he's ready. And then I always take him for treat afterwards. Yeah, I mean, he did, there was anxiety of children is really hard to tell. So he is much better, but you know, he does feel it. Sometimes he's worried to kind of sleep. He just asks me questions and now I notice, as he's getting a bit older, he's just 10, 6. He is asking me, you know, why does my sister not go to hospital? And do other people go to hospital? So he's got a few questions. He has been absolutely amazing. I like, he really has. So we're going to have a big party for him in the summer, a brave boy party. And he's going to invite all his class friends. And even though he might have to have chemo again in the future, and the road is not coming to an end in the summer because this is a lifelong condition he has with NF. And he'll always have MRI scans and checks. And all of that, he will always be going into hospital, but there has to be some end. There has to be a point where we say that's the end of this part. No, definitely. And for yourself, as his mother, I mean, the running is obviously a key thing for you in terms of managing the situation at home. Are there any other things that help you? I mean, you can't actually have much time. I can't even imagine how you juggle everything. But is there anything else that you find helpful? Talking therapies. So I have a counsellor. The hospital have been amazing. So it's notting him hospital charity. They provide a lot for you. So there's parents and rooms. And they provide counselling support when he shone was in hospital. And there was an education support for him. You know, lots of things that people don't realise that a hospital might do unless you're in that situation. So there's lots of support. And has that helped? Yeah, yeah, that has helped. And you know, and that's another reason why I did the great north-run was to raise money for each and hospital ward. Yes. I've got some very good friends. My husband, Bridge, he likes running, but he doesn't get to go as much as me because he prioritises me. He prioritises my mental health. And I think without him giving me that time to run, our family wouldn't work as well. And I'm so thankful. We all love him to bits. And he holds us all up. So I'm the emotional person. He's very practical. He makes space for my running. And that's the biggest thing he could have done to support me. And I just hope that we will have some time to actually run together in the future. It's difficult because we don't have family living near us. So my parents-in-law and his family live in Mauritius and mine live in South Wales. So we don't have that around us. And there's chemo, there's MRI scans, there's vision checks. Eshan has his blood every Wednesday. We both work. So if the juggle struggle is real, but then the running is out massively. And it just goes to show, you know, as moms and people busy lives, sometimes you put your needs at the end of something. But by prioritising my running and my mental health, my husband's support, it's meant everything else is a little bit easier to do. We just couldn't have done it without him. And also with the support from our family. And sometimes, you know, that's been from afar. But we've really appreciated it. And we've got some incredible friend and Darby that I've all stepped up. And there's been people that have come into my life this year that have come from nowhere that have helped us as well. The nurses and the doctors at the hospital. And also our workplaces because they're letting us be flexible because you know, we're managing with a son on chemo and they're letting us work flexibly around that. So yeah, we just, we're just going to do it with all the things helping. Of course, I mean, there must be so important. And in terms of your running, do you generally run on your own or do you run with other people? It makes you really say, I've been with my men in group on the Monday. Although, what I like about the running group is that you can run along with someone if you want to or you can just be with other people, but not necessarily chatting. So sometimes it depends what kind of mood you're in or what you fancy. And now it's getting dark. It's always nice to run with other people. Otherwise, I wouldn't be running out by myself. So that's on a Monday night. And then I have a running friend and we go to bed. yw'n gwneud sydd yw'r sap yw i'r yw'r amn yna. Yw'n gweithio arall i'r yw i'r gwneud yw i'r pwyllain sy'n gwyllain oedio'r gwyllain. Yna gweithio arall i'r gwneud yw i'r gweithio yn gwneud yw'r amdal. Felly mae'n gweithio arall i'r yw'r amdal. Felly mae'n gweithio arall i'r gweithio ar yma o'r amdal. Felly mae'n gweithio ar gweithio arall. Felly mae'n gweithio arall i'r gweithio arall i'r gweithio arall i'r gweithio arall. Felly mae'n gweithio arall i'r gweithio arall. Felly mae'n gweithio arall. Felly mae'n gweithio arall.