Latest / White Fox Talking / E80: Hope In Pink: How Candlelighters Lifts Families Through Childhood Cancer

Transcript

E80: Hope In Pink: How Candlelighters Lifts Families Through Childhood Cancer · White Fox Talking

0:02
SPEAKER_03: Hello and welcome to the White Fox Talking Podcast.
0:04
SPEAKER_03: I'm Mark Charler Valentine.
0:06
SPEAKER_03: And at the side of me is Seb.
0:07
SPEAKER_03: Hi Charlie.
0:08
SPEAKER_03: Hi mate, how are you?
0:09
SPEAKER_03: I'm alright, a bit under the weather, but Under under the weather.
0:12
SPEAKER_03: Under the weather?
0:13
SPEAKER_02: Is that a saying?
0:14
SPEAKER_03: Yeah, it certainly is, yeah.
0:15
SPEAKER_03: It certainly is.
0:16
SPEAKER_03: It's an old sort of northern term, suppose.
0:18
SPEAKER_03: Under the weather.
0:18
SPEAKER_03: The weather's not great, is it?
0:20
SPEAKER_03: No.
0:20
SPEAKER_03: How are you combating that?
0:21
SPEAKER_03: Um ginger, lemon, honey.
0:24
SPEAKER_03: Yes.
0:25
SPEAKER_03: Uh honey, I'm not so well whiskey, yeah, fair enough.
0:28
SPEAKER_03: Yeah.
0:28
SPEAKER_03: Although I have said before, whiskey can be your best friend if you're in a good mood, and it's a it can be your enemy if you're in a bad mood.
0:35
SPEAKER_03: Yeah.
0:35
SPEAKER_03: Put me some bad places where I'm in bad times, you know what I mean?
0:38
SPEAKER_03: So I won't I want to recommend it all the time.
0:40
SPEAKER_03: Moderation.
0:40
SPEAKER_03: Moderation.
0:41
SPEAKER_05: And stay positive.
0:42
SPEAKER_03: Yes.
0:43
SPEAKER_03: Well moderation.
0:44
SPEAKER_03: Optimists.
0:44
SPEAKER_03: There's a word you never thought I'd say, would you?
0:46
SPEAKER_03: Years ago.
0:47
SPEAKER_03: The White Fox Talking podcast is sponsored by Energy Impact.
0:51
SPEAKER_03: A little bit disappointing with life myself.
0:52
SPEAKER_03: Somebody pinched me wing mirror.
0:53
SPEAKER_03: What?
0:54
SPEAKER_03: Really?
0:54
SPEAKER_03: Yeah.
0:54
SPEAKER_03: Never.
0:55
SPEAKER_03: Yeah.
0:56
SPEAKER_05: It's not worth anything, is it?
0:57
SPEAKER_03: Well, the car.
0:57
SPEAKER_03: Yeah.
0:58
SPEAKER_03: No, it's my well, it's yeah, I mean that it's not my old old shed, is it?
1:01
SPEAKER_03: I used to have.
1:02
SPEAKER_03: But they've actually the fold I mean I fold my wing mirror in and they've actually folded it out, took the glass and folded it back in.
1:08
SPEAKER_03: Well is the world come to.
1:10
SPEAKER_03: Exactly.
1:10
SPEAKER_03: In Wakefield as well.
1:11
SPEAKER_03: You know what I mean?
1:12
SPEAKER_03: I'm used to people stories of people pinching rhubarb or horse manure causing a problem on the road.
1:17
SPEAKER_03: This is the areas that we we live, and then someone's taken it's people from Leeds moving in.
1:22
SPEAKER_03: Anyway.
1:23
SPEAKER_03: Would you like which we've got two guests tonight?
1:25
SPEAKER_03: Yeah, I know.
1:26
SPEAKER_03: It's it's quite a setup today, isn't it?
1:27
SPEAKER_03: It is, yes.
1:28
SPEAKER_03: So let's hope everything works.
1:30
SPEAKER_03: Yeah, big up to whoever's left the studio in a work in order.
1:33
SPEAKER_03: Yeah.
1:35
SPEAKER_03: This episode is sponsored by Bentley Drains Ltd.
1:39
SPEAKER_03: Bentley Drains have made a donation to Candlelighters to continue supporting the charity as they provide care for children with cancer and their families.
1:47
SPEAKER_03: So many thanks to Bentley Drains Limited.
1:51
SPEAKER_03: So here we are.
1:53
SPEAKER_03: We have Natalie Kisby from Candlelighters.
1:56
SPEAKER_04: Hello.
1:56
SPEAKER_03: Hello.
1:57
SPEAKER_03: And we have Amy Dickinson, who is a parent of somebody who's been through treatment with candlelighters.
2:03
SPEAKER_03: Is that is that how we say that?
2:05
SPEAKER_03: Yeah?
2:05
SPEAKER_03: And and as an inside knowledge from, but not as not as somebody that works for candlelighters.
2:11
SPEAKER_03: So just for connection, candlelighters is a charity sort of close to my heart because it's the one that we the we chose when our friends lost their lives in Turkey.
2:21
SPEAKER_03: And then we well, basically Andy and a few other people got together and came up with some challenges.
2:26
SPEAKER_03: And over the years we've managed to raise a few quid and hopefully, you know, contribute to the care of these young people.
2:33
SPEAKER_03: So Natalie, would you give us a brief introduction to yourself, maybe about candlelighters?
2:37
SPEAKER_03: Well that I think the way that we're going to do it is we've talked about candlelighters a bit and then we'll bring Amy in and talk, you know, or just interject when you want, Amy.
2:44
SPEAKER_00: Yeah, so head of family support at Candlelighters is my role.
2:47
SPEAKER_00: Candlelighters is a children's cancer charity.
2:49
SPEAKER_00: We're based in Leeds, but we cover across Yorkshire because a lot of our families will have to come to Leeds for treatment.
2:56
SPEAKER_00: And we support families financially, emotionally, and practically when their child is going through cancer.
3:02
SPEAKER_03: Yeah, so when I came in and were talking to Chris, Chris Salt, and he was saying, you know, it's like two million pounds a year to run it.
3:09
SPEAKER_00: Yeah.
3:09
SPEAKER_03: It's a lot, isn't it?
3:10
SPEAKER_03: And it's all and it's all from charity and donations.
3:12
SPEAKER_00: Yeah, 100%.
3:13
SPEAKER_00: We don't kind of get any government funding.
3:16
SPEAKER_00: It all needs to be raised by supporters and families and businesses, you know, trust foundations, wherever that money might come from from.
3:25
SPEAKER_00: That's yeah, what we need to raise.
3:26
SPEAKER_03: It's mad, isn't it, when you think of like I did I'm not I'm not banging on about it again already, sir.
3:31
SPEAKER_03: But you know, to I I set aside a raising two and a half thousand pounds to add to and you're thinking two and a half thousand pounds, that's what it's about uh an hour, an hour's worth of running costs if that.
3:41
SPEAKER_00: Yeah.
3:41
SPEAKER_03: It's ridiculous, isn't it?
3:42
SPEAKER_00: It's but it got all make a huge, huge difference.
3:45
SPEAKER_00: And I think, yeah, you know, every every little counts to to what we can then support families.
3:51
SPEAKER_03: Yeah.
3:51
SPEAKER_03: So candle that is is attached to the infirmary, like so.
3:54
SPEAKER_00: We're very much kind of, you know, within the hospital, we are providing that support on the front line, yeah.
4:00
SPEAKER_00: So, you know, we've got a team out there on the wards, but yeah, we also have a family support centre that's just kind of outside of the of the hospital as well.
4:07
SPEAKER_03: So if a young burst person is diagnosed and they're coming to hospital, are they still they're in the hospital, but the candlelighter supports that care?
4:14
SPEAKER_03: Is that how it works?
4:15
SPEAKER_00: Yeah, so as soon as a family's diagnosed with cancer, they they get the option if they would like support from us.
4:21
SPEAKER_00: And initially that is financial support.
4:24
SPEAKER_00: So when a child is diagnosed, as I've kind of said, a lot of families from across Yorkshire will have to be treated at Leeds.
4:30
SPEAKER_00: What many people don't know is that children's cancer, it it is rare.
4:34
SPEAKER_00: It's not something that you come across a lot, but obviously it doesn't feel rare in our world, of course.
4:39
SPEAKER_00: But yeah, so families will have to travel across Yorkshire to come to Leeds for treatment.
4:44
SPEAKER_00: So a lot of time one parent might have to give up work to be bedside, and whatever that journey looks like.
4:49
SPEAKER_00: But on average, it it will cost the family uh, you know, more than£700 a month in extra cost to have a child with cancer.
4:56
SPEAKER_00: So one of the first contacts that we'll have from us is seeing one of us in pink, introducing them to the charity, letting them know that we can help them financially with a new patient grant or a new family grant.
5:07
SPEAKER_00: And then the support kind of starts from there.
5:09
SPEAKER_00: And most families want that initial support from us.
5:12
SPEAKER_00: So we get to know about all the the families that are going through this at the at the Leeds General Infirmary.
5:17
SPEAKER_05: Yeah.
5:18
SPEAKER_05: So two million pounds a year, is there any government support towards it at all?
5:22
SPEAKER_00: No.
5:23
SPEAKER_05: We're not going on a rant.
5:24
SPEAKER_05: We're not going to no, no, there isn't.
5:28
SPEAKER_00: There is no government supporting.
5:30
SPEAKER_00: Like, say we rely on the generosity of the public to help this charity continue doing the amazing things it does.
5:37
SPEAKER_00: Yeah.
5:38
SPEAKER_03: Because we have got a support.
5:39
SPEAKER_03: So what I did, I put it out on social media, right, and just said because of the idea of you know raising funds for candlelighters, is does everyone want to sponsor this?
5:48
SPEAKER_03: So the kind people at Bentley Drains Limited are sponsoring this and they're sponsoring this episode.
5:55
SPEAKER_03: Go on, Amy.
5:58
SPEAKER_00: So there is a I was gonna say I recognise the link there.
6:02
SPEAKER_03: There is a connection, there is a connection that James, who's Noah's dad, is gonna he works for Bentley Drains.
6:09
SPEAKER_03: I suppose Bentley Drains have put a lot of support into yourselves then, haven't they, as well?
6:13
SPEAKER_04: Yeah, massively, yeah.
6:14
SPEAKER_03: So they're sponsoring this episode via a donation directly to candlelighters.
6:18
SPEAKER_00: Oh, that's amazing.
6:19
SPEAKER_03: Well, it's just I keep having these I keep having these little things, but you know, these little brain words.
6:24
SPEAKER_03: It's great.
6:25
SPEAKER_03: If I could do it for my personal finances, it'd be fantastic.
6:28
SPEAKER_03: And do you know what?
6:29
SPEAKER_03: That might be a good time to bring Amy in there because Amy, I don't know if I want to take you back to a time when you find out you're you know Noah, you know, you get that diagnosis.
6:37
SPEAKER_03: So hello.
6:38
SPEAKER_04: Yeah, hi.
6:40
SPEAKER_03: Big question, big question.
6:41
SPEAKER_03: And I don't want to take you back to times that are gonna be triggering or anything like that or upsetting.
6:45
SPEAKER_03: But obviously Noah's a success story at the moment, isn't it?
6:48
SPEAKER_01: He is, yeah, he's doing really well.
6:51
SPEAKER_01: Yeah, there's no stopping him at the minute.
6:53
SPEAKER_01: But yeah, we we found out early January that Noah had a brain tumour.
6:58
SPEAKER_01: We were actually in a different hospital at the time, and it was all very once that had kind of come back, it was we've spoken to Leeds, we've got an ambulance coming, you go into Leeds, and it was like, oh wow, okay, this is this uh this is serious.
7:11
SPEAKER_01: You hear the words brain tumour, but you just don't know is that mean they're gonna operate?
7:15
SPEAKER_01: What like so many unanswered questions.
7:18
SPEAKER_01: So we left the other hospital, me and Noah went in the back of an ambulance, and then James followed, got to the LGI.
7:24
SPEAKER_01: And we didn't go on the cancer ward, we went up onto um the newer award, and it was pretty much all systems go from there.
7:31
SPEAKER_01: It were cannulus and tests and yeah, let's find out what this is, and it ha it all happened really, really, really fast actually.
7:38
SPEAKER_01: I think we got there on the Monday night, and then by the I think by the Wednesday we're having biopsies, and by the Friday we were on the cancer ward, and he was having his first set of gamos straight away.
7:48
SPEAKER_01: We can't fault anybody at all in the hospital.
7:50
SPEAKER_01: They were just the the pace that people moved for him was just incredible.
7:54
SPEAKER_01: So we found out that he had non-Hodgkin lymphoma, and due to the positioning of his tumour, it was quite centred just between his eyes, and it was three centimetres the tumour, and due to the positioning it it had damaged his nerves in his eyes, so he was registered blind not long after his diagnosis.
8:15
SPEAKER_01: So, yeah, so we it were all pretty much system scores as soon as we got on that ward, hit him with some chemo.
8:20
SPEAKER_01: And I just I think I were a little bit ignorant to it, like you read about it and you see it, but they literally like hooked him up to this machine.
8:27
SPEAKER_01: Fifteen minutes later it beeped and that rate chemo done, and I was like, oh gosh.
8:32
SPEAKER_01: And then it were obviously in his system, and that's when our journey started, and yeah, it was just it were it were very fast, really fast.
8:40
SPEAKER_03: Yeah, just we're describing that.
8:42
SPEAKER_03: Did you have time to think about what was going on?
8:44
SPEAKER_01: I mean, I suppose it's not really, yeah, no, not really.
8:48
SPEAKER_01: I think because we had so much to deal with, obviously.
8:51
SPEAKER_01: My three-year-old's now got a brain tumour.
8:53
SPEAKER_01: He's lost his vision.
8:54
SPEAKER_01: What the hell is going on?
8:56
SPEAKER_01: Kind of situation.
8:57
SPEAKER_01: Me and James, we we took it in turns too.
9:00
SPEAKER_01: So, like when we're on the neuro ward, they set a bed up for us in a different room so we could keep swapping with him.
9:05
SPEAKER_01: Sleep was kind of non-existent anyway.
9:07
SPEAKER_01: And Noah because he was just we we just tried to keep him going.
9:11
SPEAKER_01: But then because there was so much uncertainty up there, like as soon as we got on to like 31 the ward where we walked, it were like, right, this is it, this is what we're dealing with, and this is where we're gonna be for a bit.
9:23
SPEAKER_01: We just thought, oh, we'll be in for a couple of weeks, we'll get his treatment plan and we'll see how it goes.
9:28
SPEAKER_01: But we we were in very, very, very, very, very long time.
9:31
SPEAKER_01: In total, it were about 181 days, so including the two wards, but the majority of that was on the cancer ward, because that's obviously where he had all his treatment and everything.
9:40
SPEAKER_01: But yeah, it was just it it all happened very fast.
9:43
SPEAKER_01: And then you'll see you've got all these people coming towards your professionals and consultants, social workers, surgeons, eye doctors, it's OTs, and as much as they're all absolutely amazing, it's like, whoa, I was sat on my sofa having my tea last night, and now I'm talking to you about my three-year-old having cancer.
10:00
SPEAKER_01: It's just like a bit overwhelming.
10:02
SPEAKER_01: Very, yeah, very, very and very information over lodge.
10:06
SPEAKER_01: It kind of like signing consent forms like, can you just sign for this?
10:10
SPEAKER_01: He's got to have this procedure, or can you just speak to me about this?
10:13
SPEAKER_01: And it's like, wow, this is this is actually real, real, real, really real.
10:18
SPEAKER_01: And I don't think, like I said earlier, you you see it on TV and you read about it.
10:22
SPEAKER_01: But we stepped on that ward and it were full of children having treatment for cancer, and it's like, oh wow, this is actually real.
10:31
SPEAKER_01: And now you're in that, so it's you're part of that, and yeah, it's just it's it's it's just crazy, absolutely crazy, what goes on.
10:40
SPEAKER_01: Yeah, it's not as much yeah, it's not a nice place, but it is at the same time, if that makes sense.
10:45
SPEAKER_03: Like I was I was gonna ask where is candlelight is come in with this because I know when my my my dad, obviously totally different age range, when he went into hospital, I just found the the whole hospital setting totally depressing.
10:59
SPEAKER_03: And that this was Wakefield, and I don't mind saying because we looked out window and there were like builders rubble and stuff like that, and because of sort of information that I know and stuff that I've studied, then you you know you know if you're looking out on green spaces and you're looking out something bright and something to is this what it's like with the the ward that the children are on, or or is your candle that's come across?
11:19
SPEAKER_01: I think at first it is just the issue, it's just the uncertainty of what is going on, but then as time goes on and you talk to other families or you get to know the nurses or you get to know the family support team and the square and stuff like that, it kind of becomes the new new family.
11:35
SPEAKER_01: That's what we especially found very quickly as well.
11:38
SPEAKER_01: Once kind of the dust had settled and we renew what we were up against and what was going to happen, it you kind of start making relationships with people around you just because you know you're gonna spend so much time with them, and it it does become a sad happy place, and yeah, it's especially for Noah because he was three, and we needed to keep reminding him that he was three, and he if he wanted to do something, he could do it um before like he got really poorly, obviously.
12:04
SPEAKER_01: But yeah, it was very at first it was a bit this is a bit I don't know if I like this, but I don't have a choice and I need to like it kind of thing.
12:12
SPEAKER_01: But everybody was lovely and like candlelighters were amazing.
12:15
SPEAKER_03: So what's what stage did candlelighters come in and step in there and and introduce yourself?
12:20
SPEAKER_01: Quite quickly, yeah, quite quickly.
12:22
SPEAKER_01: Our once we kind of met our social worker, she was the one that obviously told us about the grants.
12:28
SPEAKER_01: So that was just one of the weights going off your shoulders straight away that this charity are willing to give you money, and it's like, well, what do we need money for?
12:36
SPEAKER_01: And then it's like oh to survive, because you just don't have anything like we're only 45 minutes to an hour away from leaves anyway, but we stayed every single night, and it would just you eat you need food to survive, you need water to survive, the clothes.
12:51
SPEAKER_01: Toddlers grow really fast as well, so like no's clothes.
12:54
SPEAKER_01: One minute you'd wear a t-shirt, and then because they'd have like a pick line in his arm, that t-shirt won't go over it, so we have to quit.
13:01
SPEAKER_01: So and then we're not at home, but your bills don't stop, so you've still got your mortgage to pay for your council tax, everything.
13:08
SPEAKER_01: Just having that little bit extra that candlelighters are willing to give you, no questions asked, or I'm sorry to worry about your child getting cancer, but we're willing to help you out straight away by giving you money, it's it's just incredible.
13:20
SPEAKER_01: It it is incredible, and it's just yeah, it's they deserve a lot more recognition than what they get.
13:25
SPEAKER_03: I suppose now is this one of the the reasons that candlelighters has uh was formed when nearly 50 years ago now.
13:32
SPEAKER_00: Yeah, yeah.
13:33
SPEAKER_03: It's I suppose if a parent, if two if parents take their young per or the young person is taken to or child, so you your child goes into hospital and your two parents they want to be there to support that child, don't they?
13:45
SPEAKER_03: And it's it's basically I don't think you know if you if you have to then go consider having to pay your mortgage, having to pay your bills, one of your and if you're a single parent family, having to leave that child and then go to work, is this what candle lighters do?
13:58
SPEAKER_03: Is this what you what you step in for?
14:00
SPEAKER_00: Yeah, I mean, yeah, candlelighters were set up 50 years ago because you know, back then they actually the need was that actually adults and children were treated in the same area and they wanted to recognise that you know they needed this separate space and that's kind of where it grew from that that you know children need a separate wearing room, they shouldn't be with adults, you know, it's completely different.
14:22
SPEAKER_00: And then yeah, the support has just grown from there.
14:24
SPEAKER_00: I think we've recognised that, yeah, everything stops when you find out your child has got cancer, you know, your whole world is just turned upside down.
14:32
SPEAKER_00: And yeah, one parent might have to give up work, family circumstances, everybody is very different, and the the challenges that they already come with, like you say, whether we have single parents or whether, you know, people, you know, have other children as well, and how they manage all of that and childcare and travel expenses if they are coming from, you know, North Yorkshire, East Yorkshire, you know, it's it's huge.
14:56
SPEAKER_00: And and us being able to kind of step in and offer that initial financial support is is a way that we can definitely just alleviate some of those initial pressures and yeah, one of the reasons why we we do that really.
15:08
SPEAKER_03: Yeah, I think my initial idea of putting the podcast together was obviously with mental well-being and for people that and addressing the mental challenges that people got that people from all scopes of life go through.
15:19
SPEAKER_03: And the mental challenges of of having a young person, like I was just saying there, you your child's in hospital, you want to be with them, don't you?
15:27
SPEAKER_03: You know, I remember my my daughter had a kidney infection and she was hallucinating and all sorts, and I went over and slept under her bed, you know, holding her hand, and you're thinking nothing else matters.
15:36
SPEAKER_03: I'm not even I'm not I'm not ringing working, but then if it goes on, and you were saying Amy Noah was in hospital for hundred over 180 days.
15:43
SPEAKER_01: Yeah, 181, yeah.
15:45
SPEAKER_01: So we spent four four or five days on the Neo Ward, and then we were on ward 31 for the remaining of it, yeah.
15:52
SPEAKER_01: And that's a very long time.
15:54
SPEAKER_03: So if I was to walk into that ward, would it look any different to a ward for adults?
15:59
SPEAKER_00: Yeah, yeah.
15:59
SPEAKER_03: Yeah, I'm gonna say because I found them so depressing.
16:02
SPEAKER_00: Yeah.
16:02
SPEAKER_00: I think this is it, like obviously, you know, from you know, it's it's hard like asking Amy, you know, how did it feel?
16:08
SPEAKER_00: Like, you know, when it's your own child, you know, of course it's you don't want to be there, you know.
16:12
SPEAKER_00: It's you know, for you it's not a nice place.
16:14
SPEAKER_00: But you know, for for other people kind of looking in, you might expect, you know, what is it like on a children's stance award?
16:21
SPEAKER_00: But like Amy says, you know, it's so far from what you would ever expect because it is fun, you know, it is about it's you know, it's not a depressing place to be because kids are kids and they are so resilient.
16:33
SPEAKER_00: And, you know, it is about and candleligters and the team are there to to make sure that we bring the fun that you know that them they enjoy coming into hospital a lot of the time.
16:43
SPEAKER_00: I know Noah probably thinks the same, doesn't he?
16:45
SPEAKER_00: Like, you know, making those relationships with some of the team and doing the activities that they do.
16:50
SPEAKER_00: Like for them, it was just it's fun, it's you know, we can help children to be children, and yeah, that's that's what we're about.
16:58
SPEAKER_03: I remember when so there were myself, Andy Loftus and Garf Senior and we brought we brought the check down from the fundraising down at the Ann Road Banquet this week.
17:07
SPEAKER_03: And I don't think I was prepared to go in there and meet meet Noah, really.
17:10
SPEAKER_00: Yeah.
17:10
SPEAKER_03: Do you know what I mean?
17:11
SPEAKER_03: And it absolutely knocked me backwards.
17:13
SPEAKER_03: But I think as adults, we go into these places, yeah, you know, with this, oh I'm gonna meet someone that's really poly here, and it brings that it brings that sort of what am I what am I seeing?
17:23
SPEAKER_03: Whereas the kids, I suppose, they've got that innocence.
17:25
SPEAKER_04: Yeah.
17:26
SPEAKER_03: And Noah was sat in his wheelchair, and I and I remember, and I don't want to go back, I don't want to go back to it, but he sat there with tubes and things that I don't understand.
17:33
SPEAKER_03: And he sat there really bubbly and he's going about, Oh, who's your favour who's your favourite footballer?
17:38
SPEAKER_03: Now I'm just like, I can't speak, can't speak animal.
17:41
SPEAKER_00: He thought we were having a party, didn't he?
17:42
SPEAKER_00: When everyone was out there, we're like, Where's the party?
17:45
SPEAKER_01: Yeah, yeah.
17:46
SPEAKER_03: Um is that I suppose uh do you find that you can see the parents or see parents or adults carrying that load that the sort of I went in there with the weight on my shoulders, right?
17:55
SPEAKER_03: Until until you met Noah and Noah like just lit the room up.
17:59
SPEAKER_03: And he's the we're the we're the ones struggling and wanting to cry.
18:02
SPEAKER_03: Oh, and he's just bubbling and going about his meeting Ampedo and Yeah.
18:06
SPEAKER_03: Yeah.
18:06
SPEAKER_00: That this is it, the kids are just so amazing, like you know what they are going through, and you just wouldn't even know any different, would you?
18:14
SPEAKER_00: And I think you're right, though, it is the parents, you know.
18:18
SPEAKER_00: You see, and we see it when new families come in as well, you know.
18:21
SPEAKER_00: We can, you know, see that, like you say, that initial kind of hang on a second, we've just found out that our child's got cancer.
18:28
SPEAKER_00: Like, what is this world?
18:30
SPEAKER_00: And you know, we see that with the families, and until like Amy was saying, you know, you get to know the team and you're like, hang on a second, okay, and you're getting your head around it.
18:38
SPEAKER_00: But yeah, it's just kind of like for a lot of our families complete shell shock.
18:42
SPEAKER_03: Yeah, I suppose there's no way of sort of quantifying it, is there?
18:45
SPEAKER_03: What I know we have to but we all go into like facts and figures and show to show success, but quantifying how somebody or a family coming into that environment cops with against somebody with without that facility and that environment.
18:58
SPEAKER_03: Do we know what I mean?
19:00
SPEAKER_03: So if candle lighters wasn't there and the wards weren't all bright and happy places, what would the you know it's just I'm just trying to try to put your head on it, but it's just a guess, isn't it?
19:10
SPEAKER_00: Yeah, I mean it's interesting really because we do we do actually know that in other areas, obviously, you know, candlelighters is you know, we support Leeds, like we're we're across Yorkshire, we we're supporting the families that are coming to Leeds for for treatment.
19:22
SPEAKER_00: And I think we do know that in other areas, you know, there isn't a candle lighters, you know, it doesn't go any further to any of those other principal treatment centres.
19:30
SPEAKER_00: And some of our families do have to go to some of those other centres for particular types of treatment.
19:35
SPEAKER_00: So, you know, there's certain treatments that they have to access, whether that's Newcastle, whether that's Manchester or you know, Sheffield, wherever it might be.
19:42
SPEAKER_00: And families do come back and say, Wow, it's di that's different.
19:46
SPEAKER_00: You know, I think have you you've had that, haven't you, from families that have experienced that, Amy?
19:50
SPEAKER_00: You've said that before, haven't you?
19:52
SPEAKER_00: That families kind of come back and are like, Oh, this isn't the norm.
19:55
SPEAKER_03: Okay, yeah.
19:56
SPEAKER_00: You know, candlelighters provide all of this additional support, you know.
20:00
SPEAKER_00: Whether that's from the bright decor that's on the walls, the extra TVs that they've got, you know, more arts and crafts, the fun, the games, the staff, the fact that, you know, there is somebody on hand from 7.30 in the morning until 7.30 at night.
20:13
SPEAKER_00: We have our very own dinner supervisor, Elaine, who will come round and bring you whatever that child wants.
20:18
SPEAKER_00: If that's unicorn toast, she'll make it.
20:21
SPEAKER_00: You know, yeah, exactly.
20:23
SPEAKER_00: And, you know, even if the parents, you know, just offering someone a cup of tea and you know, there's not necessarily that same level of support in other areas.
20:31
SPEAKER_00: And that's the difference of of of our support, really.
20:35
SPEAKER_00: And yeah.
20:36
SPEAKER_03: Yeah, I suppose that's got to play a massive part on the mindset of the parents, which then plays in turn to the to your child.
20:43
SPEAKER_03: I don't know if I don't know.
20:44
SPEAKER_03: Can you comment on that, Amy?
20:46
SPEAKER_03: What would that be would that be a fair assumption if you know if I suppose I'm basing everything on being seeing being in an old people's ward where we're all sort of laid there.
20:55
SPEAKER_03: You know what I mean?
20:56
SPEAKER_03: You know, like this ain't looking great.
20:58
SPEAKER_03: And and I'll be honest, the food looks horrendous, and you're thinking, I won't survive on that anyway.
21:02
SPEAKER_03: And that's what I my sort of thoughts on and you're just thinking, well, the mindset is what's the point, you know what I mean?
21:08
SPEAKER_03: But but but then you're having, you know, if you haven't if you haven't got a sort of positive mindset, there's so much sort of proven about having that positive outlook and then passing that on.
21:16
SPEAKER_03: You know what you know what I'm trying to get at, Amy.
21:18
SPEAKER_03: You know what I mean?
21:19
SPEAKER_01: Yeah, absolutely.
21:20
SPEAKER_01: It's I think it's so in it's it's really hard to be positive.
21:24
SPEAKER_01: Like at the beginning, I sat in a room with a neosurgeon and asked her the question that no parent should ever ask.
21:30
SPEAKER_01: And I it is you're in a dark place, you've just found out your child's got cancer, and you're asking loads of questions that probably can't be answered.
21:37
SPEAKER_01: How long's it been there?
21:38
SPEAKER_01: Why o's and all these questions, and but then you kind of look to your left or your right and you see your son or your daughter laying the kind of thing.
21:44
SPEAKER_01: I need to just kind of not pull yourself together, but come on, you need to like this, you just need to get get your head out of your house behind us.
21:52
SPEAKER_01: There's my friends, you can cut that out if you want.
21:56
SPEAKER_01: Like it's this is happening and you don't have a choice.
21:59
SPEAKER_01: So as many as dark questions you ask and dark thoughts that you probably will have, you just kind of take them one day, but then wake up the next day and it's like, right, we're gonna do this and we're gonna fight this and we're gonna be this.
22:11
SPEAKER_01: And then that mindset, you just kind of put it on like I definitely kind of did that with Noah Aura very much.
22:17
SPEAKER_01: This is gonna sound awful, but I am not burying you, if that makes sense.
22:21
SPEAKER_01: Like, come on, we're doing this and we don't have a choice right now to do this.
22:26
SPEAKER_01: You don't understand the three-year-old, but this is dangerous.
22:29
SPEAKER_01: But the team, the specialists, the surgeons, everybody that's got a plan and we're gonna beat it.
22:34
SPEAKER_01: And then you just kind of you can't think what's gonna happen next week.
22:37
SPEAKER_01: You've got to think what's gonna happen tomorrow.
22:39
SPEAKER_01: You can't, you've got to take each day as it comes because if you start looking to the future or anything, and then something crops up and gets in the way of something, you're back into your dark thoughts, if that makes sense.
22:49
SPEAKER_01: So you've just got to take each day, and you will have them dark thoughts because you you've just been told your child's got cancer, and it's really hard to shift, but then you've you've got to shift for the sake of your childhood.
23:00
SPEAKER_01: It is hard, but you you do do it, and I never thought I'd do it, but I did, and yeah, that was the help from like the family support team.
23:07
SPEAKER_01: Like I might go off on a bit of a tangent now, but just coming in to speak to Noah and do things with Noah just to remind him that he was three.
23:14
SPEAKER_01: Yeah, you can call that or bubbles or pain wherever you want.
23:18
SPEAKER_01: Yeah, you can get it on your hands, and yeah, we can make pictures, and it's just like reminding him you're three, let's do this, even though you're attached to all these wires, or you're having like a blood transfusion or something like that, or you're fasting because you're going for a procedure in an hour.
23:31
SPEAKER_01: Well, that's in an hour, so right now we're gonna play and we're gonna have some fun.
23:34
SPEAKER_01: So it's just they're so important.
23:37
SPEAKER_01: Everybody involved is so important.
23:39
SPEAKER_01: Yeah, they just they are just amazing.
23:41
SPEAKER_01: Like we were just on about like the ward.
23:43
SPEAKER_01: If we like go for checkups now back in clinic, he wants to go on the ward.
23:47
SPEAKER_01: Whereas like me and James might get like a bit of PTSD from going on the ward, but no one wants to because he wants to go and see who's there and is Helen there, where's Ryan?
23:57
SPEAKER_01: Where's Chelsea?
23:58
SPEAKER_01: And then he'll hear someone's voice from candlelighters and he'll be like, Elaine's here.
24:01
SPEAKER_01: And he knows because he's so clever.
24:03
SPEAKER_01: If he sees Elaine, Elaine will give him food.
24:06
SPEAKER_04: And he'll get food.
24:08
SPEAKER_01: So yeah, he is it's I'm happy he's he's happy going back on the ward.
24:13
SPEAKER_01: Yeah, and he doesn't remember things.
24:15
SPEAKER_01: I'm happy that he remembers the good things, but then that's down to like everybody involved for making him realize that it was an awful place to make it.
24:24
SPEAKER_05: Yeah.
24:24
SPEAKER_05: I mean, it sounds to me like you went straight into survival mode and you never really had any time to process this properly.
24:31
SPEAKER_01: Yeah.
24:31
SPEAKER_05: Did you find some time now to start processing it?
24:35
SPEAKER_05: Is this something that candlelighters help with afterwards as well?
24:38
SPEAKER_05: I know the journey's not over, but the longer the time goes, the the more time you will find to process things.
24:44
SPEAKER_05: How are you coping with it?
24:45
SPEAKER_01: A bit up and down.
24:46
SPEAKER_01: Candllighters do offer like the talking therapies and stuff like that.
24:50
SPEAKER_01: I've not personally done it, but I know other people who have.
24:53
SPEAKER_01: And like the support doesn't just end as soon as treatment ends.
24:56
SPEAKER_01: But we I'm personally struggling with like the first of everything after treatment.
25:01
SPEAKER_01: So like Noah's birthday was in October, and that was like his first birthday, obviously, after the treatment.
25:06
SPEAKER_01: As much as like he had the best days, very much.
25:09
SPEAKER_01: I'm so glad we're celebrating your birthday, and then like with Christmas and stuff coming up, it's just the first of everything that I particularly struggle with.
25:16
SPEAKER_01: But and then there's certain days where like me and James will we'll fit we'll find ourselves kind of like scrolling through as pictures and not reminding ourselves because it never goes away, but kind of comparing pictures and being like, oh look it's so poorly there.
25:30
SPEAKER_01: If we're able to do that now, probably a couple of months ago we wouldn't have been able to because it was so raw.
25:35
SPEAKER_01: But yeah, we have good days and we have bad days.
25:38
SPEAKER_01: I do I do.
25:38
SPEAKER_01: I think when certain events come round, which is the first event I personally struggle.
25:43
SPEAKER_01: I've just got to look and look at Noah because he's just he's just doing amazing.
25:47
SPEAKER_01: And I just think what could have been, we we're we're very lucky that Noah's had his treatment, like he's rang the end of treatment bell, and he's every checkup we go to it's fine and there's nothing in it, which is great, but we also have to spend the rest of his life now like having them checks.
26:02
SPEAKER_01: So it's just a bit relapse rates are very low, but you just always think to it, you know, he was so young, like three-year-old getting a brain tumour, it's just not yeah, unimaginable.
26:12
SPEAKER_01: So it again you have to take each day because you can't think, oh, if we go for a checkup in a year's time, it might be there again.
26:19
SPEAKER_01: Well, that's no good then for like your mental health because how can you live thinking that?
26:22
SPEAKER_01: But yeah, we have good days and we have bad days, but we we get through it as a family.
26:26
SPEAKER_01: We have a really good support network, family, friends, employers, obviously, candlelighters are massive in that.
26:34
SPEAKER_01: I know if I'm struggling one day and I think who can I ring and I don't might not want to speak to somebody that is a that supported us throughout.
26:40
SPEAKER_01: I just think oh I can just pick up the phone to candle lighters.
26:43
SPEAKER_01: And if you pick up the phone to candle lighters, it's nowhere on the end of the phone because there's no but yeah, they yeah, it it comes and goes.
26:51
SPEAKER_01: Yeah, it does come.
26:52
SPEAKER_03: So, Natalie, how many people work at Candle?
26:54
SPEAKER_00: Um, so we've got around 35 members of staff.
26:57
SPEAKER_00: Yeah, yeah.
26:57
SPEAKER_03: So can I ask, what's the sort of work that you do?
27:01
SPEAKER_03: It can't it's possibly not a success every time, is it?
27:04
SPEAKER_03: Some young do some young people, yeah.
27:06
SPEAKER_03: And how does that how does that affect staff?
27:09
SPEAKER_00: Yeah, it's it's tough, you know.
27:11
SPEAKER_00: Like Amy says, you know, we are one big family, like we become part of their family, and you know, of course, yeah, we build connections with families and you know we never you we always want the outcome to be good, but unfortunately, you know, there is circumstances where that's not the case.
27:28
SPEAKER_00: But for us, it's making sure that we can be a part of making that the best it possibly can, you know, whether that's helping to provide memories, whether that's you know, helping that family through and navigating that.
27:41
SPEAKER_00: And, you know, we can take as staff members, we can we can take comfort out of knowing that we are making a difference.
27:47
SPEAKER_00: And what would that have been like without us?
27:49
SPEAKER_03: Yeah.
27:49
SPEAKER_00: But yeah, I think, you know, it's we're all we're human, you know.
27:53
SPEAKER_00: How can you not be affected by it?
27:55
SPEAKER_00: But it's important that we're there to support one another as well, and that we look after ourselves and and and do all the right things in that sense as well.
28:02
SPEAKER_03: Yeah, so when we came in, obviously we've been raising money for candlelighters, and that's how I thought of but there wasn't that connection for me.
28:09
SPEAKER_03: It's like, right, we're raising we're doing a good thing, we're raising money for a charity that looks after children and their families going through with the cancer diagnosis, and it's that's it, you know what I mean?
28:18
SPEAKER_03: But then when we got that connection of seeing the pavilion and meeting Noah and meeting Amy and James and yourselves and seeing all this, you know, pink and then I met a champ.
28:29
SPEAKER_03: Yeah, yeah.
28:30
SPEAKER_03: And you're just thinking, wow, all this is working, this is all extra for health care of young people that they wouldn't usually be getting, you know what I mean?
28:37
SPEAKER_03: I'm just without being too too hippie, there's this thing of my own.
28:41
SPEAKER_03: I know if I ain't got a positive mindset, then I'm there's probably going to be crap, you know what I mean?
28:45
SPEAKER_03: All these people are in looking at their own healthcare or the child's healthcare.
28:49
SPEAKER_03: And if you're in that negative in a negative mindset, as in a grey building and haven't got that facility, you know, if that pavilion wasn't there, where where would these young people would they go outside?
29:00
SPEAKER_00: No, I mean that's one of the reasons why the pavilion was built, because you know, children, you know, they're not allowed outside, you know, they're not allowed out of the ward a lot of the time.
29:10
SPEAKER_00: If they're in isolation, they're not allowed out of that room to even go into the playroom or anything.
29:14
SPEAKER_00: But yeah, the pavilion was built because, you know, families had experienced going, being in hospital and children asking, what is the weather like outside?
29:24
SPEAKER_00: What season are we in?
29:25
SPEAKER_00: You know, is it autumn, is it winter?
29:27
SPEAKER_00: And, you know, yes, there's there is limited windows as well.
29:30
SPEAKER_00: And, you know, not that ability to get a bit of fresh air, but building, yeah, having the pavilion as a space that is on the hospital grounds that is literally just off the ward where there is a walking distance to just get to means that children can experience and families can experience a bit of fresh air, but then also go into a space that is completely non-clinical and feels a little bit more like home and means that they can have special experiences in there as well.
29:55
SPEAKER_03: Yeah, I mean it's yeah, it just made you know it's just one of them things that strike you straight away because I, you know, without going back to that, but just making that comparison all the time.
30:03
SPEAKER_03: And so in 2024, 2088 people fundraised for candlelight, there's 1.8 million raised.
30:09
SPEAKER_04: Yeah.
30:09
SPEAKER_03: And what's that, 3,954 hours of help given by 375 volunteers?
30:15
SPEAKER_03: Is that in the is that in the facility or not?
30:17
SPEAKER_00: So uh volunteers help all it across the charity.
30:20
SPEAKER_00: So that's from yeah, kind of in the office from frontline in the family support centre to out at our fundraising event.
30:27
SPEAKER_00: So yeah, volunteers are obviously a huge part of what we do and we wouldn't be able to do it without them.
30:32
SPEAKER_05: And can anyone be a volunteer?
30:33
SPEAKER_00: Yeah, yeah, absolutely.
30:35
SPEAKER_00: Yeah, there's lots of different opportunities, lots of different areas that people can volunteer in.
30:39
SPEAKER_00: And yeah, you know, we we love to have people on board.
30:42
SPEAKER_03: And you've got the is it the cottage as well?
30:44
SPEAKER_00: The cottage, yeah, our accommodation.
30:46
SPEAKER_00: So that's accommodation for families that Yeah, so like Amy said, obviously, you know, that you know, they were lucky enough to not live too far away from the hospital.
30:55
SPEAKER_00: But as I as I mentioned earlier, some families are travelling from Scarborough, Whitby, Hull.
31:00
SPEAKER_00: And for those families, you know, it's not really an option to just kind of be on the road every single day.
31:05
SPEAKER_00: So having the the the cottage as a place where families can stay means they are just over the road from the hospital and and siblings can be kept together over weekends, you know, all those things that that kind of you know stop happening when a child is in hospital.
31:21
SPEAKER_03: Yeah, I suppose if you say somewhere who like all that and you have to travel every day then back, the toll that must take on a parent and then you thought of actually leaving your child somewhere as well.
31:30
SPEAKER_00: Absolutely.
31:31
SPEAKER_00: And you know, for a lot of our families that is the reality because they might have other children that still have to be in school.
31:36
SPEAKER_00: And you know, how do you juggle that?
31:38
SPEAKER_00: And you know, if you don't have that that support network at home as well for some of our families, you know, it is an impact, how would you know, how would you even comprehend how we are going to manage and get through this?
31:47
SPEAKER_00: But yeah, the cottage is just a a place that is a complete lifeline for families, you know.
31:52
SPEAKER_00: You heard from Amy how long they stayed on that ward.
31:55
SPEAKER_00: And, you know, for families who are living further afield to have that place where it is, you know, you've got a space where you can go and sleep at night, and then your partner can be there, or whoever might be supporting that person to swap every 24 hours if they want to, so that they can get a good night's sleep and to feel a little bit more refreshed to to tackle whatever is going on.
32:16
SPEAKER_03: Yeah.
32:16
SPEAKER_03: Amy mentioned then some talking therapies.
32:18
SPEAKER_00: Yeah.
32:19
SPEAKER_03: Is that how what sort of things is that offered and who is it offered by is it is it somebody internal to Candlelitis?
32:25
SPEAKER_00: Yeah, so we do have we have one of our team who who is internal.
32:28
SPEAKER_00: So we have Ryan, who Amy's mentioned who Noah loves.
32:32
SPEAKER_00: Ryan is our family well-being practitioner.
32:34
SPEAKER_00: He works on the wards, uh delivering kind of frontline support, supporting families emotionally, but he's also a qualified counsellor, so can offer that support to families.
32:43
SPEAKER_00: And he's also really good on the Qatar, which also helps.
32:47
SPEAKER_00: Yeah, because uh he'll deliver a little bit of music therapy as well to our families.
32:51
SPEAKER_00: So so yeah, that's on hand, and yeah, he's there for that.
32:55
SPEAKER_00: But then we also have a few other therapists.
32:57
SPEAKER_00: We offer young person therapists as well, you one-to-one young persons.
33:01
SPEAKER_03: Just about that, because what sort of age do you go would you go up to to treat him?
33:05
SPEAKER_00: So candlelighter supports anyone who is diagnosed up to the age of 18.
33:11
SPEAKER_00: Um, so as long as they're diagnosed before their their 19th birthday, then candlelighters provide lifelong support to that family.
33:17
SPEAKER_00: So, yeah, that is that's that's our email.
33:20
SPEAKER_03: Because yeah, I suppose a young person of Noah's age, three-year-old who's not no really understand what's going on.
33:25
SPEAKER_03: But I mean, for a normal person in the street, you see a cancer and it's just like, you know, we've got this impression.
33:31
SPEAKER_03: So I suppose if if a young person as a teen or younger than a teen comes in, that must be for their mindset.
33:38
SPEAKER_03: Yeah.
33:38
SPEAKER_00: You know, and that's really important.
33:39
SPEAKER_00: And and that's why we fund a dedicated youth support worker as well.
33:43
SPEAKER_00: So we have a dedicated youth support worker to work with the the young people who are from kind of age 12 upwards, because you're right, it's a complete, it's completely different navigating it as a child to a young person who has access to Google, who has more understanding, you know, have all their friends at school, they're missing out on this, you know, they might have real, you know, real thinking about relationships.
34:06
SPEAKER_00: Well, oh my friends are going out this weekend, I can't, you know, social media, then you know, body image, children, you know, young people having to lose their hair and things, you know, it's a whole kind of yeah, it's a whole different, different kind of kettle of fish as well, like having to to be a young person, teenager and and and go through that.
34:25
SPEAKER_03: I think I think we've meant mentioned this a few times, don't we?
34:27
SPEAKER_03: I think being a young person or a teenager these days would be hard enough without without going through something else on on top of that.
34:34
SPEAKER_03: So Amy, where where without putting you on spot because cause Natalie's here, where do you think you'd be without candlelighters?
34:39
SPEAKER_03: And I uh it's it must have been, you know, at the time when you're going when you're going through it, and you you realize the support that was there and like well, how would uh m how would this manage if we if we didn't have this facility and support?
34:52
SPEAKER_01: Me and James kind of had this conversation and w we we don't really know.
34:56
SPEAKER_01: We wouldn't be probably we wouldn't have been able to get through it as well as we did probably without them.
35:01
SPEAKER_01: Just like even one of us going walking off the ward, going over to the square, getting a coffee, having like a five-minute breather.
35:09
SPEAKER_01: Yeah, we I can't really imagine where we would have been without them.
35:14
SPEAKER_01: It w it was just like our full days, much as like Noah obviously he absolutely adored the nurses on the ward and he spent a lot of time with them.
35:23
SPEAKER_01: It was also the added support from candlelighters.
35:26
SPEAKER_01: He knew in a morning Elaine would come in and ask, what does he want for breakfast?
35:30
SPEAKER_01: If Noah wanted a mountain of bacon, Elaine would get him a mountain of bacon, like that woman, honestly.
35:36
SPEAKER_01: And then you're not sure.
35:37
SPEAKER_05: I like how food is always at the forefront.
35:40
SPEAKER_01: Always always.
35:42
SPEAKER_01: That boy, honestly.
35:43
SPEAKER_01: Um but yeah, he we just can't imagine how we would have got through it without them, really.
35:48
SPEAKER_01: Like I used to go over to the square and we'd have wellness, so like I'd have a facial, or James would go and he'd have a back massage, because obviously you don't look after yourself at all.
35:58
SPEAKER_01: Diet goes out the window.
36:00
SPEAKER_01: Just your whole like being a woman and obviously being like morning skin routine or bedtime skin routine, that goes out the window.
36:07
SPEAKER_01: Sometimes even brushing my hair, I probably wouldn't even do that.
36:10
SPEAKER_01: And yeah, just just being able to have that extra support, being able just to walk into like a kitchen and make yourself petite because they like the facilities are there to do that.
36:20
SPEAKER_01: You don't really get that a lot on different wards, and like the information boards and stuff that are always up to date.
36:27
SPEAKER_01: And come over to the square this weekend because we're doing this, or there's been a last-minute cancellation for a wellness.
36:33
SPEAKER_01: Do you want one?
36:34
SPEAKER_01: Yes, please, because I can't sleep on that camp bed anymore.
36:37
SPEAKER_01: And yeah, or even I think I mentioned this in another speech that I did, but even like one of the um ladies or Ryan or all it literally just looking at you, they don't ask you how you are, they'll just give you like a cup of tea or a packet of biscuits or they'll just pat you on your shoulder because my face sometimes tells a story.
36:56
SPEAKER_01: And it yeah, I just can't I can't even begin to imagine where we would have been without that support.
37:03
SPEAKER_01: We wouldn't yeah, no, they just can't they're definitely there to lift you and that's what everybody did.
37:08
SPEAKER_01: We knew as soon as because Noah was in isolation for a really long time, so he couldn't access the playroom, but we knew like as soon as one of the family support team came into his room, now the fun starts.
37:20
SPEAKER_01: Like, this is gonna be fun.
37:21
SPEAKER_01: And it's just like it's it wasn't just fun for Noah, like it was nice as parents to be able to sit and just watch him like interact.
37:30
SPEAKER_01: And by the end of it, like I think one day Ryan sneezed, he didn't say anything, right?
37:35
SPEAKER_01: He sneezed and Noah were like, Is Ryan here?
37:37
SPEAKER_01: And it just knowing like the presence of and I say this to people Noah has no idea what anybody looks like that we met in hospital because he lost his vision so early on.
37:48
SPEAKER_01: So he built trust on just hearing people's voices.
37:52
SPEAKER_01: So for then for people to like come in his room, they'd come in and they'd be like, Hi Noah, and he knew straight away who it was.
37:58
SPEAKER_01: He didn't have to think about it like Helen.
38:01
SPEAKER_01: It'd be like Helen or Chelsea or anybody that had come, and he would just yeah, he he he just loved it, and then everybody would just and he he met other people as time went on to like pink it up.
38:12
SPEAKER_01: We we managed to get him off the ward for a little bit and took him over outside the square because we were doing the bike rides and stuff like that, and he had so much fun and met other people, and it was just so nice to not be on the ward for an hour or so and have people talking to him and he had some pom-poms and it were just so lovely just to be part of something that yeah, the hospital's round the corner, but right now they're enjoying this, and that's thanks again to candlelighters for letting us be part of that.
38:41
SPEAKER_01: But yeah, we would we would be lost without them.
38:44
SPEAKER_01: Even like now, like after treatment, we would completely be absolutely lost without them.
38:48
SPEAKER_03: I suppose there's a lot going on there with that, you know, you giving you that chance to well know us in hospital, but you're not actually you're not actually thinking of him being in hospital.
38:57
SPEAKER_03: Is that him?
38:57
SPEAKER_00: Is he back?
39:02
SPEAKER_01: Do you want to come and say hello?
39:04
SPEAKER_03: One minute then special guest appearance.
39:07
SPEAKER_01: Yeah, no.
39:08
SPEAKER_01: Hiya.
39:09
SPEAKER_01: What's it?
39:13
SPEAKER_03: Hello, Noah.
39:15
SPEAKER_01: We've got Natalie from Candle Lighters.
39:17
SPEAKER_01: You know Natalie, don't you?
39:18
SPEAKER_01: Yeah.
39:19
SPEAKER_01: And then we've got and then we've got to say hi, Noah.
39:24
SPEAKER_03: Hi Noah, how are you?
39:26
SPEAKER_03: Are you good?
39:27
SPEAKER_03: I s I saw you on the football on on the pitch at Ellen Road with Ampadu.
39:32
SPEAKER_04: Yeah.
39:33
SPEAKER_04: Yeah.
39:33
SPEAKER_03: Yeah.
39:34
SPEAKER_03: And uh yeah, you you led the team out, didn't you?
39:36
SPEAKER_04: Yeah.
39:37
SPEAKER_03: Yeah.
39:37
SPEAKER_03: How did that make you feel?
39:38
SPEAKER_03: Was that good fun?
39:39
SPEAKER_04: Yeah.
39:40
SPEAKER_03: Yeah.
39:41
SPEAKER_03: That's cool.
39:42
SPEAKER_03: And do you remember when we c we came and seen you in hospital and you asked us who our favourite player was, and you were just gonna talk about Ampedoo.
39:48
SPEAKER_03: So that's good.
39:50
SPEAKER_03: So we've been talking about you for a while.
39:52
SPEAKER_01: Yeah?
39:53
SPEAKER_03: Yeah.
39:56
SPEAKER_01: Is he gonna say bye then?
39:57
SPEAKER_01: Bye now.
40:06
SPEAKER_03: Such a star.
40:09
SPEAKER_03: That's so that's so nice to see him being, you know, happy and you know just just a just a boy.
40:16
SPEAKER_03: Yeah.
40:20
SPEAKER_01: Yeah, absolutely.
40:21
SPEAKER_03: Yeah, I mean he's a he is bubbly, isn't he?
40:23
SPEAKER_01: Yeah.
40:24
SPEAKER_03: Yeah.
40:24
SPEAKER_01: Yeah, very, very bubbly.
40:26
SPEAKER_01: He uh he's gone back to nursery two days a week now.
40:29
SPEAKER_01: So we get like a bit of routine, but he doesn't stop.
40:33
SPEAKER_03: How was that when you like sent him to when well not when you sent him when he went first went to nursery after you've you know you've gone through all this, and I suppose you want the young person with you, your child with you, and then you it was so we did a couple of settling so he's managed to go back to where he was prior, which was what we wanted.
40:50
SPEAKER_01: We were really happy with that.
40:51
SPEAKER_01: And he has a very lovely lady who's down his turn to one.
40:55
SPEAKER_01: So we did a couple of settling in sessions with him where we stayed, but then that first drop off went in and obviously put his coat on his pair.
41:03
SPEAKER_01: Final mate were like, oh okay, um, he was more than happy to kick me out the door.
41:08
SPEAKER_04: Oh right.
41:08
SPEAKER_01: I then cried like he was more than happy.
41:11
SPEAKER_01: I then cried all the way to what I'm talking about.
41:14
SPEAKER_01: It was like first day all over again, but he he needed children interaction.
41:20
SPEAKER_01: And yeah, like because he was in isolation for so long, he didn't get child interaction because he wasn't allowed in the playroom and stuff like that.
41:28
SPEAKER_01: And as he got better, if we were allowed out, we we were only allowed out like off the ward with him, and he's got two older nieces who adore him.
41:36
SPEAKER_01: They were the only kind of child interaction that he got whilst we were in hospital because they'd come and like obviously visit as he got better.
41:42
SPEAKER_01: But so it was so important getting him to nursery and him wanting to go to nursery.
41:47
SPEAKER_01: But yeah, he um he's he's more than happy to to be there, be playing with his friends again, just be being himself again.
41:54
SPEAKER_03: Being a little boy, yeah.
41:55
SPEAKER_01: Being a little boy.
41:56
SPEAKER_03: He is a he is a he's a proper star, isn't he?
41:58
SPEAKER_03: And he's just walked out around the road pulling team out.
42:00
SPEAKER_00: I know watching that training video with Ampadu, yeah, he is he is a little star for sure.
42:06
SPEAKER_00: That is what you're doing.
42:08
SPEAKER_03: Is it about who did you walk out with?
42:11
SPEAKER_01: Who did you walk out with?
42:12
SPEAKER_01: Satan, every every different one.
42:15
SPEAKER_00: Every different player, yeah.
42:16
SPEAKER_03: Every different player, yeah, you did, didn't you?
42:18
SPEAKER_03: But you were on the pitch, weren't you, with all them people cheering.
42:20
SPEAKER_00: Yeah.
42:21
SPEAKER_00: And made it on TV as well, didn't you, Noah?
42:24
SPEAKER_00: Yeah.
42:24
SPEAKER_00: Yeah.
42:25
SPEAKER_03: So do you remember Natalie from Candlelighters?
42:27
SPEAKER_00: Yeah.
42:27
SPEAKER_00: Tell us who's one of your favourites from Candlelighters, because they still when I take this back to the team, they'll all want to know who you say, Noah.
42:35
SPEAKER_00: Who's one of your favourites from Candlelight's?
42:37
SPEAKER_00: Oh, is it a tough one?
42:38
SPEAKER_00: You think can't answer.
42:42
SPEAKER_00: You loved you loved it when Ryan used to play guitar with you, didn't you?
42:45
unknown: Yeah.
42:46
SPEAKER_00: Yeah.
42:46
SPEAKER_00: And when Helen used to come and play fun and games with you.
42:49
SPEAKER_01: Yeah.
42:50
SPEAKER_00: Yeah.
42:51
SPEAKER_00: You love them all just as much as each other, right?
42:53
SPEAKER_01: Yeah, no matter what heads on to them.
42:59
SPEAKER_04: What does that do, Mommy?
43:01
SPEAKER_05: Don't turn it off.
43:03
SPEAKER_04: Yeah.
43:04
SPEAKER_05: I guess the question that kind of arose from this, because Candelite seemed to create this strong sense of community, and which is one of the five five pillars of mental health for the family for us.
43:15
SPEAKER_05: Um do you reckon because you create this community, other families support each other through the hard times as well?
43:21
SPEAKER_00: 100%.
43:22
SPEAKER_00: I mean, you know, people refer to their ward family, and that's those who support one another, you know, on the wards.
43:29
SPEAKER_00: They're they they're the best support for each other, you know.
43:32
SPEAKER_00: They know exactly what it's like to have a to be going through what they're going through.
43:36
SPEAKER_00: Yeah.
43:36
SPEAKER_00: Obviously every family's journey is completely different, but you know, yeah, that's the importance of of them having that time and that space.
43:43
SPEAKER_00: And one of the reasons why we host a lot of support groups, so mum's groups, dad's groups, family events where, you know, whether that's sibling groups, grandparents' groups, where we're bringing people together to help them kind of form those connections so that they can support one another, because yeah, a lot of the time that's where they get their best support from, because just being with other people who get it, you know, you go back to school as a kid, and if your brother or sister has just been through what they've been through or, you know, sadly they've they've lost their brother or sister, who else gets that at school?
44:14
SPEAKER_00: Like no other child's probably been through that sort of experience, but put them in a sibling support group with other children who have been through that experience.
44:22
SPEAKER_00: Well, hang on, I feel like I belong now.
44:24
SPEAKER_00: And yeah, it's really important that we have those those opportunities for families to meet in that way and and provide those connections.
44:31
SPEAKER_03: Did we say did we ask you how many people you sort of help each year?
44:35
SPEAKER_00: Um Yeah, so I mean, roughly um around 150 children and young people get diagnosed with cancer in in Yorkshire each year, and obviously we will support every one of those families, but you know, no families' journey kind of ends right there.
44:50
SPEAKER_00: Some families will be on treatment for many years, um, and yeah, that support then continues for as long as they need us.
44:56
SPEAKER_00: So, you know, we can have families come back to us 30 years later.
45:00
SPEAKER_00: Yeah, you know, that our support is still there, you know, for someone who might have had cancer when they was a young person, they're now in they're now an adult, then they're now coming to terms with hang on a second, you know, when I was this age, I had cancer and I missed out on this, and now I'm struggling with this, and you know, trying to put all that together and you know, families come back to us and they can access the talking therapy at that point, you know, where else do they turn to?
45:23
SPEAKER_00: Because yeah.
45:24
SPEAKER_03: Suppose that must be reassuring, Amy, that it's you know, this is ongoing.
45:27
SPEAKER_01: Yeah, absolutely.
45:28
SPEAKER_01: And I think that's why, in a way, we're very lucky as well to have us to have that support because it it just doesn't stop.
45:35
SPEAKER_01: And I think it's so important, especially after treatment, because like we were mentioning earlier, when you kind of sit and reflect and think, what has just happened?
45:43
SPEAKER_01: But then you go to these groups, like we've taken Noah to a couple of the family events, and like the other week we went to um the Halloween party, and we um it's just nice to know that you're not really alone, if that makes sense.
45:55
SPEAKER_01: Like, yeah, you've got your family that sees the part, and your friends and stuff, but can the lighters see it?
46:00
SPEAKER_01: They know what goes on on like the wards and stuff, and they obviously know from families and stuff, but yeah, it it is great that it continues and that it just don't stop.
46:10
SPEAKER_01: And like we became really good friends with um a couple of the families that are on the ward, and like we speak to them daily and see each other when we can and stuff like that, and it's just like it's crazy that you would never think you your paths would cross without your children having cancer, but now you we've got these other friendships because of that.
46:28
SPEAKER_01: But yeah, it's it is really good to to know that I might not be able to get to like the square for six months, but say in the six months that have passed are walking, and it's it's just like you've never not been there, it's it's just we always try and make time to call when when we're over, just for a bit of yeah, normality again.
46:45
SPEAKER_01: And oh hi everybody, and you it's just a nice warm welcome.
46:48
SPEAKER_01: Even when we were on the ward, it was the same thing, and you just yeah, people don't you can kind of walk over and not get the sympathy smile that everybody else gives you when they see that like your your child's got cancer.
47:01
SPEAKER_01: So, like, say if we took Noah out, he he had uh an NG tube in and that went up his nose.
47:07
SPEAKER_01: Obviously, he'd have like the plaster, he'd have a hat on because he'd be bald because he's lost his hair and he's little, so you get the we that's what we called it like the sympathy smile from people.
47:16
SPEAKER_01: They'd see you pushing a poorly child, and you get the are you alright or how are you doing and stuff like that.
47:22
SPEAKER_01: And then but then we'd go over to like the square and it'd just be like, Hi, are you okay to want a coffee?
47:28
SPEAKER_01: And that's what you want.
47:29
SPEAKER_01: You want that normality, you don't want the sympathy smiles all the time.
47:33
SPEAKER_01: It's like, yes, I know my child's got cancer.
47:35
SPEAKER_01: Can you stop staring kind of thing, or just treat me normally, which was nice, which was what we needed, we needed normality as well, and that's what was so important.
47:45
SPEAKER_01: So it was yeah, it was nice to to get that, and you still get that now, which is really good.
47:49
SPEAKER_03: Sorry, I suppose the staff become because you've seen them day in and day out as well.
47:53
SPEAKER_03: So yeah, forming them friendships as well, aren't you?
47:56
SPEAKER_01: Rather than Yeah, yeah, absolutely.
47:58
SPEAKER_01: And they are there like through the dark times as well.
48:00
SPEAKER_01: Like I remember I can't specifically remember what had happened, but I were having a bad day, something must have happened with Nora and I had to remove myself because I was just inconsolable.
48:10
SPEAKER_01: And Elaine actually came out and like comforted for a minute, and that was nice because you don't people don't need to do that, like people don't need to come off the wall to check that you are okay.
48:22
SPEAKER_01: Like, yeah, you don't the people don't need to do that, but they did, and that yeah, it was just nice.
48:28
SPEAKER_01: Or you'd go into the parents' kitchen and someone would be there from candlelighters and you'd be talking about something that didn't include children's cancer, it'd be about something else, and then you kind of go back into your room or your being, you think, Oh, that'd be a nice conversation because it actually didn't involve the reality of what's happening, it was just something else.
48:46
SPEAKER_01: But yeah, we like I say, we we're very fortunate to have them, very fortunate.
48:51
SPEAKER_01: And we we set up Team Noah as part of the fundraising because I'm very passionate about giving back, and we will probably for the rest of his life support the lighters and ensure they get obviously funding from from our family as much as as we can, then yeah, we'll just keep keep going and keep fundraising for them.
49:09
SPEAKER_03: From a personal opinion, it's you know there's so much we've got if you've got one person that's that's still polling, buy whatever, and you've got this full circle of people, uh carers, and then family, etc.
49:21
SPEAKER_03: working outwards, it it impacts everyone, doesn't it?
49:24
SPEAKER_03: This is a thing, and if support's not there, that's you know.
49:27
SPEAKER_03: I mean I got I I've got to go just go back to my 25 years of virtually, you know, a go with PTSD like six months, and then it was like the damage that I caused after that then.
49:36
SPEAKER_05: I mean, it also sounds to me like you know, it's great that the support is available in the Yorkshire area, but what about the other areas?
49:42
SPEAKER_05: Why is it missing?
49:44
SPEAKER_05: This should be everywhere.
49:45
SPEAKER_00: Yeah, yeah, definitely.
49:46
SPEAKER_00: Uh there is lots of amazing charities out there that are providing little pockets of support.
49:51
SPEAKER_00: But I think, yeah, when you look at the scale of what candlelighters offer from that point of diagnosis beyond and that kind of comprehensive package of support, you know, we haven't even touched upon half the stuff I think candlelighters actually provide.
50:04
SPEAKER_00: You know, there's so much more there isn't really anywhere else that does it in the same way that we do.
50:10
SPEAKER_00: And I think, you know, it's it's an absolute gold standard for what should be provided for children with cancer.
50:15
SPEAKER_00: And I think, yeah, that's what we demonstrate.
50:17
SPEAKER_00: We demonstrate that that, yeah, providing this support means that children, young people and families have better outcomes afterwards, you know.
50:25
SPEAKER_00: Hopefully they don't need to rely on, you know, come back to the to the NHS for certain things because we've been able to, at the, at the point of diagnosis, you know, we provided outreach play specialists that went out to children's that went out to the families' homes and spoke to that young person to explain this is what's happening to you, this is the reason why you're losing your hair in a in a child-friendly way.
50:44
SPEAKER_00: You know, candlelighters fund those specialists to do that.
50:47
SPEAKER_00: And hopefully that means that then they don't need any other support further down the line because actually, you know, that was explained to them at that point and they understood that.
50:56
SPEAKER_00: And, you know, that's kind of what we hope to do really.
50:59
SPEAKER_00: But yeah, it it definitely, you know, we'd love for it to be available absolutely everywhere for families because it should be.
51:05
SPEAKER_05: So I guess this is a really good point to ask you.
51:07
SPEAKER_05: How can people actually support the work that candlelighters doing?
51:10
SPEAKER_00: Yeah.
51:11
SPEAKER_00: So I mean, yeah, we cannot do any of this without, yeah, the kind generosity of people, you know, whether that's spreading awareness, whether that's, you know, raising awareness of candlelighters, what we do, children's cancer, whether that is fundraising for us, you know, doing amazing events like, you know, you guys have been doing and, you know, ru doing little bake sales, any sort of fundraising events, you know, getting it into your schools, communities, great ways that you can fundraise.
51:38
SPEAKER_00: People can kind of support by, you know, going to our Amazon wish list and buying things there that's all available on our website, or volunteering, like we've said as well, or just yeah, like making those connections to candlelighters to to where other businesses or other supporters might be able to help, you know, anything like that is a huge, massive help for us.
51:59
SPEAKER_03: Yeah, I think we've well, I think when we came down to kind of the check over, we're like, oh, that's so we're done.
52:04
SPEAKER_03: I think it was£150,000 after 10 years when we did.
52:09
SPEAKER_03: When we all spun through alt-pit and alternates on that on that tough uh what's it called?
52:15
SPEAKER_03: Tough game thing.
52:16
SPEAKER_03: And then the the charity dinner, you know, to have a charity dinner with a load of a load of lads that go watching football and families were there and that to raise 83 grand.
52:24
SPEAKER_03: But we were like incredible.
52:25
SPEAKER_03: That's 200, what's that, 233 grand?
52:28
SPEAKER_03: That's it's an odd number, so we need to do some more.
52:30
SPEAKER_03: Yeah.
52:32
SPEAKER_03: So that's good.
52:32
SPEAKER_03: And then there's people like uh Bentley Drains Limited.
52:35
SPEAKER_03: Bentley Drains are a delegation to candlelighters to continue supporting the charity as they provide care for children with cancer and their families.
52:43
SPEAKER_03: So thank you to Bentley Drains Limited.
52:45
SPEAKER_03: Get that plugged in there again.
52:47
SPEAKER_03: But it isn't it, so it's just things like that that you know some people make in around.
52:51
SPEAKER_03: And and when you look at the you know, when Chris said right, it's two million pounds a year, like how much?
52:57
SPEAKER_03: In the in the grand scheme of things, two million pounds don't sound a lot until you start thinking, well, you know, two grand that I got from marathon or whatever, you're like, bloody hell, that's not.
53:05
SPEAKER_03: You know what I mean?
53:06
SPEAKER_03: Like keeping paperwork's for you.
53:07
SPEAKER_00: But I suppose it all It does, it does, yeah.
53:10
SPEAKER_00: It's you know, without those people going out, raising small, you know, small amounts, big amounts, whatever amount it is, like it is it enables us to provide this support that Amy's told us about today.
53:24
SPEAKER_00: And I think, yeah, you know, that is what keeps the charity going and being able to provide these things for families.
53:30
SPEAKER_00: So it's you know, it's so important.
53:31
SPEAKER_00: And yeah, you can there's no measure of of you know how valuable that support is, how big, little, small, even just making connections, you know, raising awareness, like it all makes a huge difference to us.
53:44
SPEAKER_03: Cool.
53:44
SPEAKER_03: Well, I hope when this goes out it raises awareness and as a boost.
53:48
SPEAKER_03: There will be for custom from Bentley drains.
53:51
SPEAKER_03: Yeah.
53:52
SPEAKER_03: Because I'm looking on the I'm looking at website here and I'm looking at massage and relaxation and reflexology and energy balance here.
53:58
SPEAKER_03: I'm like, sounds like a spark and I book myself.
54:02
SPEAKER_00: Yeah.
54:03
SPEAKER_03: But there's there is so much you offer there as a I think that's it.
54:05
SPEAKER_00: I think, yeah, it's just it's such a huge, yeah, huge offering for families.
54:09
SPEAKER_00: You know, we fund research, you know, we send families on holidays, you know, we fund vital roles within the hospital that just won't be there.
54:18
SPEAKER_00: And yeah, I think it's such a huge range of support that yeah, it's uh there's so much to talk about really.
54:23
SPEAKER_00: But yeah, you could be here all night.
54:26
SPEAKER_01: I just think it's really important for people to realise how much candlelighters actually do.
54:31
SPEAKER_01: And like I said earlier, we would have been completely lost without them all.
54:35
SPEAKER_01: And I think Noah probably would have been as well.
54:37
SPEAKER_01: I think he would have got very bored of me and James.
54:40
SPEAKER_01: And yeah, they were just an amazing charity.
54:44
SPEAKER_01: And yeah, I I thank them every single time I see them, but from the bottom of my heart.
54:49
SPEAKER_01: I just don't know where we would be, but yeah, they are amazing, so thank you.
54:53
SPEAKER_03: Yeah, well, thank you for coming on and joining us, amen, giving us up your time and for and to Noah for his little guest appearance.
55:00
SPEAKER_03: You know, I think I think meeting Noah that time that were like this enough.
55:03
SPEAKER_03: We can't run a bloody marathon for something like this.
55:06
SPEAKER_03: Yeah.
55:06
SPEAKER_03: And then again, on a personal note, it was it was that coming down to candlelighters and meeting you all and making that connection that you know when you you you fundraise for something, yeah, it's just like you fundraise for something and then then and then you've you know you've d you think you've done your bit, but when you see it's actually all this working, like we just explained, it's so big and it's it's so important to the well-being of the young person and well-being of the parents, yeah.
55:30
SPEAKER_03: And that family unit.
55:31
SPEAKER_00: Yeah, yeah, yeah.
55:32
SPEAKER_00: It's definitely important.
55:33
SPEAKER_00: I think, yeah, if if anyone does want to come down to Candlelighters or come down to the square and see us, like, yeah, you're more than welcome.
55:39
SPEAKER_00: Come have a coffee with us and find out how you can help.
55:42
SPEAKER_00: Because I think, yeah, it does make a difference.
55:44
SPEAKER_00: You like you say, just kind of fundraising for a charity that's at arm's length that you don't really see that, but yeah, even just kind of like coming into the family support centre, seeing what that's about and the support we offer, then yeah, I think it's yeah, makes you want to go away and do more because, like you say, you see these families and think, well, if these families can go through this, then we can we can do a whole lot lot of things, can't we?
56:07
SPEAKER_03: Well, I've spoken to Andy and um we have got an idea of an event in mind for next year.
56:12
SPEAKER_03: I'm not telling him the full truth until we set off on the morning.
56:15
SPEAKER_03: No, no, but it'll be alright, but it'll be it's gonna be a good one, I think.
56:21
SPEAKER_03: Yeah, I think it'll be a good one.
56:22
SPEAKER_03: So so hopefully that connection with uh sort of the uh Leeds fans remembrance is gonna go on.
56:27
SPEAKER_03: I think we'll we'll won't be far off.
56:29
SPEAKER_03: We'll be fair off.
56:30
SPEAKER_03: What will it be when when mine's added it with 235 or something like that?
56:33
SPEAKER_03: So that'll be cool, and then we'll yeah.
56:35
SPEAKER_00: See how you to three?
56:37
SPEAKER_03: Yeah, and then it'll be the well, we might as well go to five and just keep smashing it out, aren't we?
56:40
SPEAKER_00: Yeah, no, it's incredible what you guys have done and the the fans, the supporters, the families, yeah.
56:45
SPEAKER_03: Amazing.
56:45
SPEAKER_03: Well, thank you both for joining us.
56:47
SPEAKER_03: Thank you.
56:48
SPEAKER_00: Thanks for having us.
56:49
SPEAKER_01: But yeah, thank you for letting me be part of this.
56:52
SPEAKER_02: You're welcome.
56:54
SPEAKER_02: And if you would like to support us and help us keep the podcast going, then you can go to buy us a coffee or you can click that on our website, whitefolkstalking.com, and look for the little cup.
57:05
SPEAKER_02: Thank you.