Let's Talk About Brain Tumours

Episode 47 - Spotlight on Young Adults Masquerade Ball

• Episode 47

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In May this year, we hosted not only our first in-person Young Adult event since Covid but our first ever Masquerade Ball.  Anna and Chandos, explain why events like this are so crucial to young people whose lives have been affected by a brain tumour diagnosis.  We also hear from other young adults about the impact these events have on people like themselves who may not have the same opportunities to experience events like this as other young people.

You can find out more about our Young Adults Service here

You can also find out more about our events for young adults here

We also hold Family Days for families with children under 18 which you can find out more about here

You can also contact the support team by calling 0808 800 004 or emailing support@thebraintumourcharity.org

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If you would like to speak to a member of our support team you can call 0808 800 0004 or email support@thebraintumourcharity.org

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 from brain tumour charity about what we're doing to halve the harm and double survival.

Chandos:

Hi, everyone, welcome back to The Brain Tumour Charity podcast in this spotlight episode, myself and Anna are going to be talking about the masquerade ball that happened back in May this year. So both myself and Anna attended The Brain Tumour Charity Young Adults Masquerade ball, on the 26th of May at Chatsworth house in Sheffield, along with other young adults, between the ages of 18 and 30, who've all been diagnosed with a brain tumour, or a family member or friend has. So Anna, do you want to talk a bit about the event and what was involved.

Anna:

Yes, so like you said, it was at Chatsworth house, in Sheffield. So we all kind of had it there on the Friday and which was quite exciting. I think for a lot of people it was quite nice to just to get out of the area, I think, obviously, for those people diagnosed, they don't really get a chance to really leave where they where they live very often. So it was quite exciting in that kind of sense that the charity gave people a place to stay as well, alongside the event itself, and we all kind of got put up in a hotel, which was really lovely so people didn't have to worry about whether we're going to stay after the after the event. So we all kind of went to the hotel and got ready and it was nice that it gave everyone a chance to dress up as well. I feel like it's been a long time since I've dressed up in that kind of way or worn, like a dress and heels, you looked amazing, you look great in your tux as well. So I don't know if you felt the same, but it was just kind of that nice feeling that I think people who've maybe been through things that are really kind of rubbish in the past year or so got a chance to really feel quite good about themselves.

Chandos:

Yeah, it was just amazing to see like everyone, like I think when you're going through treatment, or even when you're seeing your family, it's hard to like feel, feel good about yourself, so having that opportunity to dress up and step away for a moment, which is really important.

Anna:

Yeah, exactly, exactly and then the event itself when we got there, the venue was beautiful. We were, they arranged transport for us from the hotel to the event and I can remember all of our reactions as we kind of drove over it was just like it looked like something out of a movie. It was really really beautiful kind of stately home area and Sheffield, it was just gorgeous and the weather was beautiful as well, which I think made it so when we got there, there was kind of a bit of a Prosecco reception and gave us a chance to take photos and things and chat a little bit and kind of talk to other people that maybe we hadn't really met before, which was which was really lovely. And then after that we all kind of went in, we got a two course meal so we got a starter, and main and we all kind of seated in this lovely room. It just looks it looks a bit like a wedding inside. I think it was gorgeous and the food was really nice and then afterwards, there was dessert vans outside in this courtyard, there was pancakes and waffles and like candy floss and things like that. It was just it was all just really lovely and then afterwards, we kind of got a chance to hit the dance floor and let off some steam, which I think is really needed for kind of people our age who've gone through, not very nice things. It was just a nice, a nice chance to have a dance and just enjoy yourself and remind yourself that you are young, and it's fun to just be involved and do things like that with people your own age.

Chandos:

Yeah, I think also, I've spoken to a couple of people who it was their first involvement with The Brain Tumour Charity as well, like, they've never been to an event before so it was kind of like a nice introduction to meeting everyone and stuff, because I think everyone was just on that, in that place where they were like, they didn't feel like they couldn't express themselves and be themselves so I think it was just amazing to see how everyone dressed up in different styles and stuff. But yeah, I think it was just amazing and everyone got on the dance floor by the night, which I think was

Anna:

Yeah, yeah, exactly and I think what was really kind of poignant about it is that, yes, there was a dance or and people were up and dancing and doing all of those kinds of things. But because it was arranged by The Brain Tumour Charity, it was so accessible for everyone so there was no kind of pressure to be up dancing, if that's something that maybe some people struggle with, or they know that there was a quiet area for people who are maybe slightly sensitive to the music and things like that or if they just needed a timeout, even emotionally it could be a bit overwhelming at times, and that that there was loads of Brain Tumour Charity staff as well who were all around and getting involved as well. And then a few of them got up on the dance floor at one point with us but they were all there to help if anyone did feel uncomfortable or had any questions throughout the night and there was also a photo booth, which I know is really popular, there was lots of funny photos taken in there lots of props and things and they all got printed out and sent to us over email as well. So it was really nice to kind of have those memories, I think. Yeah, it was just it was just really nice event and yeah, so grateful to the charity for kind of setting it up for us. What was what would you say was your kind of favourite part of the whole night? I know, we discussed it a little bit. But what was your favourite part?

Chandos:

I think it was just being around people who like you could just be open and honest with and yeah, there was a lot of like dancing and stuff and that kind of like broke the ice a little bit so you could then have those important conversations, like, I was on the dance floor and then I met someone who was there with his wife, and they travelled from like, I think Wales or somewhere. And so they've come quite a distance to be there and it was nice to just have that chat with him and like, learn about his story and stuff and, like, you get to meet so many new people in that kind of environment where you're just having fun, but you're also like, you know, you're also challenging, and raising awareness of brain tumours, because everyone's gonna then post on social media and talk about how, just because you're like diagnosed or something, or you're, like, you're living with the impact of a brain tumour, your life still goes on, and it can still be beautiful.

Anna:

What does it? What did it kind of mean to us specifically going to an event like that?

Chandos:

I think I don't really, like, since I like, I feel old when I say this, but as I've got older and like, like, I think my anxiety like around like my fatigue and stuff and like, there's normally like when I go to uni and stuff like I'd be the first one to leave because it'd be so tired. I think I'd hide that and like, I'd try and like persevere through or like push myself too much.

Anna:

Yeah,

Chandos:

Like an event like this, I was able to just, it wasn't like we didn't stay up too late, like, I think we finished like 11 something like that sort of at point where you still felt like you enjoyed the whole evening. Everyone was there with you and stuff and I think like having that experience being able to go out and dress up and just be be with other people I think was really important.

Anna:

Yeah, yeah, I totally agree.

Chandos:

What would you what was your favourite part of the event?

Anna:

So many, I think I definitely agree. I think just being there and getting the opportunity to meet so many inspirational and brave young people who have been affected in all kinds of different ways, like whether they've had their own diagnosis or a loved one, or even if they've lost someone to kind of hear those stories and kind of see them enjoying themselves. Obviously, it gave me a chance to enjoy myself as well, but kind of to see other people who I was so aware of also experienced things like that all just smiling, it was such a happy room, it was just a room full of so much happiness when it could have been a room full of so much sadness and I think there's so many people who have gone through something so sad and just kind of difficult. So I think that in itself, and I think just kind of that being there and the venue and everything, it was just it was not something that I would usually do in my day to day life is kind of dressing up and I think it was such a nice like sunset and just looking over the grounds and stuff it really kind of gave you that like, whoa, kind of feeling like like life can be really good and I think that was that was exactly what it was all about. So I really loved that and then I don't know, I think for me specifically, just how it kind of helped me it was it was just really kind of nice to again, like you say get another opportunity to obviously attend it, but then have something else to really talk about and promote and I'm hoping that even doing this podcast as well will hopefully be able to get other people who are our age who can find out about the event and what we went to and hopefully encourage other people to come to something like that and, and make their lives a tiny little bit better even if it's just for an evening. I think it's really important that we constantly keep getting these opportunities through The Brain Tumour Charity to kind of help other people who are in similar situations.

Chandos:

And I think like just talking about what you said there like the journey there on the coach I think was really nice as well because everyone to sit next to someone new and that you could like talk to the people around you because it wasn't like you'd like everyone was arriving there on their own, like there was a journey that was like from the hotel to the venue and then on the way back as well, I think when everyone was on that, like then they had really good time and they were like starting to relax now getting back into like that routine of going to like going to bed and stuff, and I think like it sounds cheesy but you can have those a really deep chat where like,

Anna:

yeah,

Chandos:

like in that comfortable zone, like I think we were sat next to each other with some other people we were just chatting about like just everything and anything that was on our minds and I think that was really important as well.

Anna:

Yeah, no, totally it was an it's kind of even if you that people are in a position where they can go on nights out themselves in the day to day lives, they're not necessarily going to be with groups of people or friends that necessarily understand them when you do get into those kinds of conversations, after a drink, or, or even just in a social situation anyway, it's not necessarily always with people who understand us and relate to us. And there was all sorts of other tiny little factors that were just so such lovely touches, like we all just got given like, little boxes or sweets that I can remember on the coach on the way back just eating our sweets, when we left, they were on our tables and things like that and I think the fact that were they people were allowed to bring a plus one if they had a partner, or maybe a friend who they wanted to bring for support so it wasn't maybe as daunting to come on your own. And the plus one got all the meal and I think for them as well, it was an opportunity for them to maybe talk to each other. So it's a they were kind of the partner or a friend of someone who is living with a brain tumour I think that might be quite a difficult situation to be in as well, because obviously, they might not know anyone else who's who's living or caring for a person who has who has a brain tumour diagnosis so I think for those people, the plus ones to interact with each other as well, I think that was probably equally as important.

Chandos:

I think it shows that like, especially when you're dealing with a brain tumour or cancer, like, it can be really hard to look past what you're going through. The event shows that there is a different way to, to helping people deal with what they might be experiencing and stuff and I think that's, like just a big thank you to those who fundraise for the events to go ahead.

Anna:

Yes, absolutely. We also have some clips from some other young adults who are at the ball, Maddie, Sophie and Victoria who wanted to share their highlights from what the event meant to them, we'll play those now.

Maddie:

Young adults ball was a really lovely event to attend. It was really special to get dressed up, go to a beautiful venue and get to meet so many inspiring people. There's something really powerful about being able to share our stories. In this way with people who understand.

Sophie:

The ball was really good, I like events by The Brain Tumour Charity because they include other people I like to make friends.

Victoria:

The young adults ball by The Brain Tumour Charity was a really great event and it brought a bunch of different diverse groups of young people together who had been affected by a brain tumour to just celebrate, and actually just be young together and have fun, and dance and sing and eat and just celebrate being alive and celebrate being part of such a special community. Events like that means so much to me, because I get to meet amazing people who I would never have had the opportunity to me if I hadn't had such a great loss from my dad having a brain tumour so overall, just an amazing event and I'm very lucky to get to go to one.

Anna:

I don't know about you but that was really lovely just to kind of hear other people's opinions on kind of what their favourite bits were. It just goes to show it's not just you and I who had a really good time, I know that it was a lots of chat about it afterwards on the Facebook group that was set up for the charity. I think again, that was another really nice touch that they set up a specific Facebook group just for people who were attending the ball because it meant that people got a chance to talk to each other beforehand and kind of check what other people are wearing and things like that and kind of get to know to that I know that there's a few more support groups and things on online that young adults can kind of get involved in and be made aware when other events happen. Do you have the names of those?

Chandos:

Yeah, so there's The Brain Tumour Charity Support Group, which is for everyone. There's The Brain Tumour Charity Young Adult Support Group and there's also a Carers Support Group, run by The Brain Tumour Charity that you can check out via Facebook.

Anna:

Yes, amazing and I think the young adults support group is tends to be for young adults who are living with a brain tumour and the carers Facebook group is for not just people who are necessarily caring specifically for someone who's got a diagnosis, but I think it's also for people who just have a loved one in general who have a diagnosis as well and I know that the charity tend to advertise their events on there so if any, if there's any other young adults listening who this sounds like a good event or something that they'd be keen to attend in the future, then check it out.

Chandos:

So whether you've been diagnosed with a brain tumour or a family member or friend has the brain tumour charity here to help, you can call 0808 800 0004 that's, 0808 800 0004 or visit thebraintumourcharity.org.

Sarah:

If you've enjoyed this episode, it would really help us if you could head on over to Apple podcast, Spotify, or wherever you get your podcasts and leave us a review, as it really helps podcasts like this to reach more people. Thank you