Let's Talk About Brain Tumours

Episode 9 - What's it like to get diagnosed as a child?

October 05, 2021 The Brain Tumour Charity Episode 9
Let's Talk About Brain Tumours
Episode 9 - What's it like to get diagnosed as a child?
Show Notes Transcript

In this episode we hear from Rosie who was diagnosed with a brain tumour when she was just 8 years old.  She shares what it was like to be a child going through treatment, how it affected her friendships, going to school and the long term impacts both mentally and physically of having a brain tumour at such a young age.

If you would like more information about our Children and Families Service you can go to our website https://www.thebraintumourcharity.org/living-with-a-brain-tumour/get-support/children-and-families-service/   or contact the team directly by emailing childrenandfamilies@thebraintumourcharity.org

For more information about our Young Adults Service https://www.thebraintumourcharity.org/living-with-a-brain-tumour/get-support/young-adult-service/   or email the team at yas@thebraintumourcharity.org

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Sarah:

Welcome to Let's Talk about brain tumours, the podcast where we'll be talking to people who have been affected by brain tumour diagnosis, either their own diagnosis or the diagnosis of a loved one. We'll also be sharing news and updates and brain tumour charity about what we're doing to have the harm and double survival. Hello, and welcome to the podcast. I'm Sarah and today I've got with me chan das and Rosie, they're going to be talking about seeing their diagnosis as a child and the difficulties some of the complexities around receiving the diagnosis when your child so we are going to have a bit of a chat today. So I'm going to let Rosie start attending some little bit about her story. And when she got diagnosed, how old were you when you've got diagnosed Rosie

Rosie:

so I was a I was diagnosed in December 2004. So wiles of light, everyone, the diagnosis of brain tumours are always kind of quite late and everyone has different symptoms, but I showed a lot of virus symptoms and the autumn term and was having to take time off school and then eventually it kind of balance showed quite a lot because I had a medulla blastoma, which was in the cerebellum. So it affected balance as well. Towards the end, I got quite severe headaches. And that was when it was really like an eye opener that something had to be it was just in this. It's a doctor's really. And then eventually I got sent to the hospital and had a CT and MRI. And then yeah, I shortly had surgery to remove the tumour which removes the whole tumour, which was then followed by six weeks, so freddo therapy, and about a year and a half of chemotherapy.

Sarah:

And do you remember what of that or

Rosie:

I remember quite a lot of it, I think there are some hearts, which I don't really remember. And then some things that I do remember, but my memory of it is like how I think of it now is probably quite different to how I thought a bit then all I can just remember is being told that I had a lump in my head when I was first diagnosed and then been sent to hospital and that because I was sent to Southampton, and they're quite good with their brain to treatment and surgery. So I think I just felt like I was in good hands. And the doctors were always nice. And as a child, that's kind of your experience. You just get on with it and accept it early. I think there were experiences and memories, which I do have, which will want more difficult, but I think everyone's going to have those on different levels as well.

Sarah:

Where are you going to school at this point? We're used to that school or what was that? Like?

Rosie:

I think it was more in the autumn time. So really from like September to December that I was going quite downhill and going to the doctor's every so often them telling me I had a virus and just take a few days off school so I was beginning to feel quite unwell in the autumn term. And then my writing became really wobbly. But my teachers were noticing this at school and I think they were saying to my parents and parents evenings or that that Rosie is lacking interest. She's quite fatigued. She hasn't got a usual spark in her eyes. She's not concentrating as well. So they definitely noticed there was a decline. So yeah, I think I was trying to go to school school but maybe just struggling with it before the diagnosis. And then when my treatment started in the new year, I think as soon as my radiotherapy started, I felt really unwell that So during my treatment, I didn't go to school much. I think occasionally my parents tried to encourage me or take me in for like an hour to see people friends in school. I wasn't really able to go in and then it was towards I think when I finished and April 2006 treatment, I think I was able to go in some Mornings or afternoons. So I think I was encouraged to try and go in if I was feeling well enough, but that wasn't that often but the support from the school was amazing. They liaised with mom and dad a lot about what was going on. And because it was just a village school and down the road. We could pop in and see my friends and I remember getting lots of lovely cards back and like get off soon. I was always made to feel included, or they tried to include me like if the run up to Christmas or so

Sarah:

that's similar to you Chandos

Chandos:

Yeah, I mean, I was when I was I was three when I was diagnosed. And because mine was benign, I got to have less invasive treatment. I just had the surgery, but the toll it takes on your body to to having a surgery and having someone operate on your brain is is really taxing and I remember like it taking weeks for me to fully recover. And when I was in and out of hospital at the time at a couple of friends who would bring stuff to the hospital for me or like cars from school or similar to Rosie and that was nice too. cuz I mean, even like the kids who used to, like bully me a little bit and stuff or used to find like little flaws that they used to pick up on, they used to even contribute a little message to the card for that, like small moment of time. So you felt a bit more like maybe it's not, I mean, at the time, it still felt like they were just picking on me. But now looking back, I think it's more like they didn't want to care. They just didn't know how to because when you're a kid, we talk about the treatments and stuff and like hearing what really went through as adults, that'd be tiring for us. But for a child who's so much less developed a lot younger, and a lot doesn't have the mind the processing that we have now, like understand what they're going through. I think it's so much harder.

Rosie:

I definitely I definitely feel that one of the biggest struggles that I had, because I then moved to a different school. So the school that I was at, during the time of my treatment that was a small village school friendly, we knew the families in the village, it was just like, I don't remember any of that being negative experience. I always remember smiley faces, maybe a few slightly unintuitive comments, but you can't you can't not expect that from kids. But then yes. So when I first knew April 2006, and I started a new school in September, so I just finished treatment and was only grow my hair back. And I think the thing I struggled with was you think other kids are going to understand that. And I'm sure you definitely found that throughout all your different stages.

Chandos:

Yeah, I think I even I struggled to understand what was going through sometimes, like you'd be told you going pro checkup, even though you've had the same checkup, like four or five times, by the time you've been told this message, like going in for routine scans every three months or whatever. But I'd still panic and I still not be sure of what we're actually going through or what's happening. And I'd have to have my mum explain it to me quite regularly. Otherwise, I'd forget. I just wouldn't understand. And that's even the same like at school like with information stuff. And where some kids could just pick up things really quickly. I've really struggled.

Rosie:

Yeah, I guess Yeah, like you're saying, you don't really know what you're going through. And especially when you begin to struggle with in education with things like processing and concentration, but you don't really know that you're struggling with those things. Because you that's what you've always known, I guess, I think a lot of through the senior school, I didn't really I think maybe I just switched off in lessons or maybe didn't pay, didn't hear everything that went on or didn't process things as well. And sometimes it doesn't really switch on, do you think actually, these are real things I'm going to learn to develop strategies and ways I can cope with this. But I guess there are times when you don't actually realise all the struggles that you do deal with

Sarah:

that kind of thing that happens you go through treatments a child you have the surgery and you chemotherapy, radiotherapy have whatever treatment, you know, all your friends at school, because have they have very limited understanding of illness as a child, they think you're better because you're not in hospital anymore. They think you're better. And you try to adjust back into normal, quote school life, then you start to notice these all these little things that maybe you're struggling with, but you don't necessarily know whether that's just because that's who you are, or because it's the tumour or the treatment. Is that quite a confusing time.

Rosie:

You just, it's strange, because you don't get tested straightaway for the things. It's not like you have a test for dyslexia. And they tell you, this is what you use. You can't just accept it and you think this is the way I am. I'll just get on with it. I don't know if this sounds a bit weird, but maybe if you haven't had that background, but it's almost like because you've already grown up with all the struggles of a brain tumour and you're used to it, then the Astra effects you just think that that's part of me anyway, that's used to it, you just kind of accept as natural. I don't know, what do you think Shadows?

Chandos:

I think it's just saying like, you develop a sense of who you are, like, based on where you're going what in school and in life and stuff and with the treatment and like I found like people would like test you on that like they'd make you think is that who I am because I'm trying to develop a sense of who I am away from my diagnosis and away from from having this tumour. But they'll like when they're all developing and go on to do different things throughout school like and doing really well like academic stuff, and you're really behind and struggling and makes you think like that self doubt. Am I good enough? Is this? Should I be trying harder? Is it me or is it the tumour? There's impacts in there

Sarah:

because I guess there's a double edged sword, isn't it? It's not just the Chima. It's all the time you miss from school because of the tumour as well. So you're having to catch up on all the learning you've missed, and also dealing with whatever side effects that you've got from the tumour as well.

Chandos:

Yeah, I think like I found like, when I wasn't in hospitals at school, I forget about the fact that I was had hospital should like treatment and stuff and like, I'd just be focused on here and then like, I'm like I'm in a lesson and I'd be struggling and my mate next to me He would be doing really well. And I think I'm so stupid. And then forget that I've actually had to have brain surgery which has impacted on things. And that might be an indicator.

Rosie:

When you say that, then I forget that I have brain surgery that makes me think that back to the kind of like, except you accept it. So the flaws and everything and the negative effects that it has on you mentally, like on your education and your intellectual abilities. You you forget that actually, I've got through all of this, I've had to deal with all of that. But you don't you don't think you don't see yourself as it's sometimes it's harder to see yourself as I've got through this. I'm really strong like it's, it's sometimes hard, hard for you to actually come to terms with actually, I am brave, I am strong. I've managed to get through that. But it's even hard for me to try and explain actually, that yeah, I get I think we've school I remember like, not really having certain difficulties and learning difficulties diagnosed or brought to my attention much really inter came to GCSEs. I think I do remember like in class, just always like when you're told to go and reader, you know, a few paragraphs or whatever. And then the class teacher asks you questions until So what was this person saying? Or what was the key messages? And that or it's almost like I feel I had a mind blank, think like, I haven't even started to process the first few sentences or understand what's going on? How is everyone already there?

Sarah:

Did you feel like a sense of pressure in I should have been I should be able to do this. Now. I should be normal. Now. I've had you know, I've had treatment back at school, did you feel that there was a sense that not even the people around you that the you felt you should be able to do this?

Rosie:

I don't, I don't necessarily think I can't remember feeling? Maybe I did feel like I should be able to do this. Now. I don't think I felt like I think I just it's not like necessarily, it might not necessarily be really obvious, it might just come across as you being the quiet person in class, or you being the person who doesn't really speak marching up in class or, but then actually deep down, it's because you're not processing or you're it's a bit harder for you to understand things. But maybe you're just accepting it as I don't seem to remember feeling that I should be able to do this. But actually, when you say I think it only really I only really started acting on that properly. When obviously eventually with GCSE, I did have a bit of help with trying to process it and do that. But then when I went to college, I did I did extend BTech in art, so it was all coursework and it was doing something I really enjoyed. But it wasn't a new class, thank goodness, because there was an opportunity to do this project called an extended project qualification, which is a self directed project, I think the equivalent one as or one a level. And I chose to do I thought Great, this sounds really interesting I want to do, I want to do it in a in the subject of dolphins and whales, because that's what I was, I was so interested in from actually when I was ill with the my treatment, I did my own little self directed project. So I thought this is great, I can do something other than art, like I love, I love art and everything. But it's nice to do something else when you're doing that the whole time. And for one of the training sessions we had or like learning techniques, things and we did a similar thing of reading a paragraph and then highlighting different parts of the sentences and different colours. And because I hadn't done that academic stuff in a bit, because I in a while because I wasn't doing that stuff at college. I thought I just remembered how difficult it was. And I'm thinking I need I need to do something about this. And so actually I went to learning support and that that was really like changed everything that was really helpful. And they they helped me a lot with ways to process and ways to kind of organise things and I am quite like I am I like to do organised stuff and use colour coordinating things and everything and do less I'm quite like that, that they helped me with Disabled Students Allowance which helped me a university as well. So they really helped me with a mentor and lots of like, ways to help me with learning.

Sarah:

Did you have a similar experience Chand also was your your route through education different

Chandos:

so I really struggled in like processing information and stuff was really hard for me. And instead is like today I'll have to read a letter forms this morning and it was taken the energy out of me because like trying to process all that information. But when I was At school like, I was so far behind that they like, took me out of public school and put me into like a home school that was like, Well, I was homeschooled for a short period. And then I went to like a, like a small school for people who were homeschooled. So it was like a mini school in the community. And that was really helpful for me to have that stepping stone back into education.

Sarah:

What sort of age was that was that sort of your primary school,

Chandos:

it was end of primary school beginning of high school, like around that period, there was a bit of time where I was in a high school, and then I got, I left and then went back to another high school after being homeschooled, just because even that transition is quite hard, especially for any young person added in a brain tumour. And that's even more difficult. But I think a lot of like myself, myself out impacted on my ability to learn and stuff, because I think I'd always doubt like a birdie. So I'd be learning like everyone else, and I'd be a bit bit behind. But then I'd be like, I can't do this, like, everyone else is going to do really well. And like people would tell you that because like I remember I had my a level, GCSE predictions come through, and they were like, you're not going to do it, you can fail everything. So then that sits in the back of your mind. And like, you think they're saying that because I'm stupid, or because I've had this brain tumour, and they, they don't see how I could achieve anything

Sarah:

actually really interesting. Do you think that distinction between? Were they judging you purely on the fact that you had a brain tumour? Or were they judging you on your academic ability at that point?

Chandos:

Yeah, I think, looking back, I think it was maybe a mixture, I don't really know. But because I'm not them. I've never spoken to the people. But I think also is that when we see someone whose life has got a diagnosis of a brain tumour or any cancer to me, especially in childhood, it does change your identity and your sense of who you are and your belonging in the world. And I think as soon as someone questions that makes you think differently about it, it has repercussions across everything. So when I was struggling at school and having self doubt, then impact on friendship groups and stuff. And as I've got older, I found ways of coping, and saying, like, I'm not great everything. But as long as I know the basics, and I can see numbers, or I can write a simple essay that's gonna get me through to the next stage. And I'm trying my best. That's all that really matters, because I think

Sarah:

friendship groups come into, you know, you talked about friendship groups there. Is that difficult when you're going through all of this in school to find your place within friendship groups?

Chandos:

Yeah, I think I was talking to a friend the other day about it. And like I was saying that the people who you know, in school, we don't speak now. But when you're at school, and you're going through something, you're not there for a couple of days, those friendship groups that you had previously be gone almost, or like, they'll either form new friendship groups to try to fit back into those or like, I've been away for a couple of weeks, and then come back, and everyone's form little groups. And I'm like, where do I fit in? Where do I go and in this in this environment, but I had a couple of like, core friends who helped me and like, I could always, like, count on them to be around me. And again, that's happened, as I've got older, like, they're still around, like, we can not speak for months, have a conversation. It feels like we've never like stop talking. But I think especially I've got older and I've learned to manage my own disability and mental health around who I am. And separate the two between. I'm Chandy and yes, I have a disability, but it's not everything I am. That's helped me to have the confidence to make new friends and stuff. And I definitely think that like going back to talking about earlier like having a brain tumour it impacts your hands of like your ability to process information. But it also heightened your ability to like have empathy with people and be more resilient. And I don't think we're taught that as kids, I think we they forget, like, they're so focused on the education side of things, which is good because everyone needs an education and is entitled to but being resilient, really important, especially as we've got over the last year like things can change so quickly and impact on everyone's life. And to have a break to go through a brain tumour treatment and diagnosis and even after you're through the treatment, you've got to be so resilient, because you've got to have that strength to keep going and even when times get tough. You got to just remember that. tomorrow's a new day.

Sarah:

Obviously, you're nodding your head a lot Rosie, I can see you kind of that's clearly resonated with you quite a lot.

Rosie:

Yeah. Well, I definitely kind of the first thing that kind of when Shan Das was talking about empathy and like as you grow up, you definitely, even if you don't see friends as much or you have less friends, but you're, you're very picky about who you spend your time with. And because obviously socialising it's very, it's very exhausting, but you you learn who it's worth spending time with who it's worth. Being friends with, I don't know, it makes you a bit more picky about your friends. And that when you do see your friends, even if it's not very often that it really does mean a lot. Yeah. So there was a kind of friendships and as you grew up you, you learn who you want to spend your time with. And then there was this empathising, but also, yeah, the resilience such as really kind of, that's quite quite a huge word. I think this is something that I was talking about, with Sarah, about resilience as resilience and resilience. So you do develop a lot of resilience. When you go through something, whatever experience it is, with the brain tumour, and especially like, as a child as well, you develop resilience at you, you have no a wet, you might not even have awareness. So you have that resilience. But then the other resiliency is sometimes like, when you feel it's really hard to cope with situations when you feel like you just maybe feel like, you can't cope with stress, or you get emotional or you can't deal with arguments, or you can't deal with things when you know, just when sometimes when you might feel that you can't cope, you might feel like you're not resilient, but resilient. But actually there is me Sarah, same time. So that yeah, when you said resilience, like just strike quite a nerve still inside, like developing myself, but then I probably have got a lot of resilience anyway. So

Sarah:

yeah. Do you think that as a child, you go through something hugely traumatic when you get brain tumour that you don't necessarily have the language for the words for or even the coping strategies to deal with, you have to very quickly find ways of processing and coping with something that most adults would not even be able to cope with. And we struggle to process. But your tiny little child brain has got to somehow make sense of something that is so huge, and that you have no frame of reference for how do you think that affects you?

Chandos:

I think like the tumour came back when I was an adult, like I just turned 18. So I was an adult. And I think I cope better, in some ways when I was an adult. But also, when I was a child, there were certain things like my ability to bounce back and keep going was stronger when I was a kid, because you had all that energy that you have, when you're a kid, you just want to learn you want to experiment, you just want to experience life. But when I wasn't like going to checkmate uni, like, I just was tired all the time. And like, university drains you anyway. But I find it harder to find that willpower and that strength to, to think I can do this. And there was moments that were really like tough and stuff like that. But when you're a kid, I think there's certain things that like, you don't know what it means. But I think like that resilience to keep bouncing back and keep going. People just say I give kids have loads of energy and stuff. But it's also their ability to like learn and to want to experiment. And just to like, try new things, which I think is really important when when going through treatment because I think life can become so black and white. And so like, fixated on the four walls of the hospital, they're stuck in, in that hospital room. It's really dark and like to whitewash wars where it's, it feels like everything is like on top of you. Especially when you're a kid and you're so small in this big room, surrounded by so many people, especially where like the voice of you is not heard when everyone around you has seems to have these conversations but forgets you're there sometimes. Not always, but sometimes won't.

Sarah:

What's your experience that Rosie? Yeah, oh,

Rosie:

well, I just thought from what channels was saying. I just think yeah, you talked about coping, how? How you coped as a child, and that made me think, how did I cope as a child like, if I think of emotionally coping as a child, I can't, I can't really put a finger on that there were probably a lot of ways I coped that I can't remember now. And a lot of ways that I cope, which obviously affect how I cope now. I know it's Yeah, coping then and now is very different. But then it made me think of with Chand OSes experience of having the diagnosis so young and coping as a child, and then it's so different to how you cope as an adult and almost like, is it an advantage? Not really knowing the reality or not really realising how serious the situation is, you will never once I don't think as a child, you think of the reality now it's like you went through life threatening experience, you could have died, but I would know I would have never thought then I don't think I ever really thought that to do

Sarah:

either of you know how seriously seriously ill you were when you were a child, or do you think that was you? Take it from that by your family.

Chandos:

I think I was protected a lot. I think I knew a certain amount. But also I was just like, I just wanted to get better. I wanted to be like my mates, I wanted to get to where they were. And I think I was just prepared to do anything and everything to get there. And also, I had a forgetful memory anyway, so like, I'd forget information. So I wouldn't add stress because I like I developed a CD inside worry about things a lot, especially about germs. But that's when I was like six. So I guess like, as I got older, the more I knew, the more worried and the more that thing that impacted on me. And I think when I was having my last surgery, like, I wish I knew less, because I stressed less about it. And I think that factor didn't know everything. When I was a kid, my care was decided by my mom and my family, like who were helping me and like really respecting the best things like getting the best outcomes for me. I think that helped hugely, and I still had that when I got older, but it was more so my decision, I had a larger voice. And I think that influenced and impacted things a lot more, or what you raise you

Rosie:

supported and protected. There was a lot of support family, friends, I don't I don't think I was ever really yeah, maybe exposed to how Li was or felt like I do remember my mom saying to me, don't let someone call it cancer or don't, I can't remember the exact words. But I think all I I kind of just referred to it as I've got a lump in my head, or I had a lump in my head, and the doctors are cheap, I'm having treatment, and the doctors are making me better. So I don't think I ever really, maybe there was a block, maybe there was a block or a barrier there to house How ill I was, I don't really or maybe it maybe if it like tried to creep into my mind, maybe I just blocked it out somehow. And that kind of maybe maybe that was part of a child being resilient, I don't know. But then there was a time when you have finished treatment. And you think about you or you you you see other children who were your age, when you diagnosed anything. While I was losing my hair at that age, or you it kind of it does make it does stir up, it does stop motions. And you or you think I had a no story about that stage or I was having chemotherapy treatment or you think about children learning sports and getting you know, when they start getting stronger and getting interested in activities. And there's that loss. There's that gap in your childhood, whichever stage it might be, but then there's a kind of grieving of the childhood, I guess. And I think I've I'm going off a bit but I think

Sarah:

it's a really interesting point, Rosie, because I think there is something about as an adult, you look back on childhood experiences, and you try to make sense of those childhood experiences. You're seeing it through adult eyes, but you're remembering it through a child's eyes, your memory of it is as a child, but you're looking at it as a as an adult. And that must be very confusing. And like none of us ever think we're is you know, as young as we are. As we get older, we almost can't imagine ourselves being like 5678. But then you look at another child that age you think, calm when I was that age, I was having brain surgery, like you said, Rosie, I was having having chemo and radiotherapy and losing, you know, my hair fell out. And I was having to go to school and headscarves and you look at this little person. And it's hard to imagine that when you see a child that's a similar age to what you were when you were treated to look at that person thing. I was that little there's that small and young when this terrible things happening to me.

Rosie:

Yeah, I think one thing which really does start things up and did stir thing that for me was photographs. So for the first time when when I did advert on BBC children lead into having five that it was made to look quite, it looked quite sad. And it was a childhood experience, which I didn't, I didn't see my which obviously was not my experience, but it's how others might see it or it's obviously a completely different perception. But then when I saw pictures of me with a nice shoe, they're looking so poor, you're just came out of surgery that I think things like that really do you kind of stir up emotions, particularly when you are 12 or 11. I have pictures of me my brother and sister in my room and that that was before I became ill and it kind of it makes me feel sad looking at that because I miss I miss that person. So it's like that, that loss of childhood but then if someone said to you who didn't know your background experience if someone said to you, and this comes up a lot in conversations in normal commerce Asians like what you like as a child? I think a lot of people who've been through a brain share experience, maybe wouldn't know how to answer it. Well, actually, what was my childhood?

Sarah:

That's a really, really interesting. Yeah, very interesting point. Because it isn't it comes up what we like as a child. And you've always got to, you've got like two separate childhoods, haven't you? You've got the child pre diagnosis, and then you've got your child. And it's like, you could definitely draw a line in the sand. How might you channel us?

Chandos:

Yeah, I think I had two different things that I tried to, like with my fundraising and stuff. And I was going up, because I just wanted to bridge that gap between two like, I wanted people to have an understanding what it was like to be a kid going through that. And also wanted to give myself the confidence that like, yeah, I can get better I can live well, with my diagnosis, I don't think I knew that at the time, I think I just wanted to get better. I wanted to be someone stronger than I was. But I think as I've got older, that understanding and that, that ability to see that, like, the fact I've lived through that is something to be proud of. Because I've come to the side, I'm still not 100% better, or like, like everyone else in bracket, but I'm living well, and I'm doing the best I can. That's what really matters,

Sarah:

I think that's a really important thing to remember is that we're all individuals, and we all you know, have to measure ourselves against ourselves and not other people, because it's very easy to look at other people. And think I shouldn't be where they

Rosie:

are, I think channels where you said, I just wanted to get better. That I think I definitely remember feeling that like a complex fish my treatment, I just want to get better i i am I'm good drops to making that I am going to get better. I just want to get better. But as a child, you don't realise that when you see better. And then it goes back to a year after your treatment. Three years after your treatment five years after your treatment. It's not like it disappeared. It's not like your experience of of treatment does it different for everyone. But all the effects it's had on you. They don't disappear. So there's, I just wanted to get better. And then there's the coming to terms with new things you might experience or new obstacles that you're faced with. And you're like, where did that come from? Or what how does that link? Or why does it affect me like that? Why am I like that? Why am I different in that way?

Sarah:

As you're getting older? Do you discover new things from a child getting a diagnosis, you're constantly having new experiences aren't new as you go through life? Like leaving school getting a job as you go through life? Are you learning more and more about ways that you didn't know you've been affected? Yeah,

Rosie:

also, brain tumours affect everyone? In so many different ways. It's unbelievable to think about all the different effects it can have on people physical, emotional, mental, intellectual, is crazy, like, even imagine all the different effects but yeah, so when when you have that when there's that in hospital treatment, surgery, whatever it is, you don't get told what's how it's going to affect you, you don't get told that there are these long term it's like you kind of discover and learn for yourself and then you develop strategies and and then there's a comparison and the acceptance and you want to be able to do things that actually then realise that things are harder, things might be harder, there might be more more hurdles. And then there's the acceptance like Oh, kind of comparing yourself to others

Sarah:

nodding his head and frantically Bae did you want to add to that channel?

Chandos:

No, I think Tracy said Oh, Did either of you have teachers

Sarah:

that you might have had previously and you know to your team I judged you or treated you differently?

Rosie:

I don't remember there being ever surprise. I think the teachers I had dealt with it really really well. And amazingly I think at both schools they did I think the second tool is more there. See other students in school that I struggled with I think the teachers in my secondary school I think they kind of I think if I did struggle with things or I don't remember feeling judged or not trying as hard I don't remember that but I think yeah, when it goes back to come in school with the nose tube or coming to school with a bandana I think the teachers cope cope with that really well the school cope with that really well. And I think obviously the teachers have to save the children when it comes in. Grades. It's been poorly she's been in hospital for a bit like she's going to look different because they have to prepare the children as well. But I don't remember that ever. feigned surprise, or Yeah, I was made to feel comfortable.

Sarah:

What was it like for you, tangles?

Chandos:

I think the majority of the teachers were all right. But there was a couple of like, I knew what I was being bullied because of how I looked. And like my parents and my walk and stuff was changing, and people could pick up on that. And like the, when the kids would be bullying me and stuff, the I remember the one head teacher we had, were saying that like, now it's just kids being kids. And I was like, that's like teeth. That's like a head teacher teacher, sort of like going against everything that everyone else is saying, like all the teachers were trying their best to help. But his approach is completely different and completely wrong. But I mean, like, when I was in high school stuff, there was a couple of moments where there was little things that like, teacher would say things and I'd be like, do you really understand what was happening or whatever, not just for me, but for other people around me with disabilities or with mental health conditions that were affecting their mind in their brain processing. But I think the large majority of the teachers and like, professionals have been really good. That's

Sarah:

something that I know, it's definitely an area where people have very varied experiences of that, which is a real shame, we're going to be doing some young adult and children family surveys to try and find out a little bit about what people think of our service at the moment, what they would like from us moving forward. In the past, we have done young adult surveys we've done too in the past, when we first set up young adult service, we've never actually gone out to people, but our children and families service. But we feel that with the impact of COVID, that now would be a really good opportunity for us to go out to people and find out a little bit more about what people think of our services, what people want from our service moving forward, how to shape our services. And I know that both of you guys have accessed our services in the past, I know, Chandos, you've, you've used our young adult service in the past what what parts of the service if you access them till now? And what do you think moving forward, if you've got any ideas moving forward?

Chandos:

So I've always had access to the ambassador, young Ambassador programme, and the support the suffered through that and been some of the family days and stuff with my own family and my friends and stuff to kind of gain confidence and to meet other people with a brain tumour diagnosis. I guess it's just been really helpful to meet people who've gone through similar things. Yeah, whole range of things really like just the support that's on offer through the help lines and stuff like that as well, when I've been needing that additional support and guidance.

Sarah:

Thanks, Rosie, you've had similar, haven't you? I know that you were involved with the charity before even became a brain tumour charity, and you've attended family days as part of your role with the young ambassadors, but you've also been part of the adult service and moving forward, what sort of things do you think in the post COVID world I

Rosie:

think it's very personal preference really, or dependent on everyone's how their emotional state or physical state or what they can and can't do. But I definitely, I definitely feel from my experience, being able to meet up with people and interact with people, that has been a highlight being able to see other people, but I definitely can see that for some people, it might be a bit tiring, or that full on. And obviously, having the the online chats and everything bought online recently, has been easier for some people due to not having to travel as far you know, not it's not as tiring. So I think I think it's very much the balance between and the impact it has on your mental health, being able to interact with people face to face, but then also like how it impacts you physically, whether it's too much or too, too exhausting.

Sarah:

Yeah. And that's why it's really important for us because you're right, it's very individual to people and the more people we can get to fill out these surveys, the better idea we have of what moving forward to service will look like if people out there listening to this, then it'd be really important for you to just click on the link, we'll put in the show notes so that people can access to surveys and really tell us what you want from service, what's good, what's bad, what we can do better, or any suggestions that we can take moving forward. You know, this is your service children, families and young adults services are here for you. And that's what we want to create a service that not a service that we think you want, but a service that you actually do want and does meet your needs. So thank you very much, guys. We hope you enjoyed today's episode. Don't forget to subscribe to the podcast so you'll never miss an episode. If you'd like more information, you can visit our website at brain tumour charity.org or email our support team at support at the brain tumour charity.org And finally, before you go if you enjoyed this podcast, please can leave us a review on iTunes wherever you get your podcasts so we can reach more people and raise more awareness