18th August 2010
Cotham Park, Bristol, UK.
Sound file name: 03_Lucy_tree_93.amr.wma
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LEGEND:
… short pause or incomplete sentence
{with a degree of uncertainty}
[simultaneously stated]
(comments)
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Henrik: Well just…}
Lucy: uh hmm hmm hmm, hmm
Henrik: hmm, hmm Okay umm… uh,hmmm (clears throat). Lucy. Hello.
Lucy: Hello! Mr. Henrik
Henrik: Um… So, this is a bit of a compromise, isn’t it, in a way?
Lucy: What the tree climbing…
Henrik: In a way?
Lucy: Uh, yeah.
Henrik: What you felt like it was?
Lucy: Yeah I kinda’ wanted to go up the ladder and get up a tree but, I don’t think I could probably… do it really. I could get up but I wouldn’t be able to maneuver myself around.
Henrik: Yeah.
Lucy: ‘Cause um… yeah. I haven’t really got the breath. All the muscles and it’s like, “ah!”
Henrik: Yeah.
Lucy: uhmm… (‘kay).
Henrik: How long have you been in sort of in this condition?
Lucy: Um… been gettin’ worse over the past 3 years, but like really bad. Um, I guess the past 5 or 6 months.
Henrik: Right.
Lucy: So, it goes in stages, so have like a couple of good days and then um like a week or so of bad days and then it would feel a bit better and then it gets worse but it keeps gradually gettin’ worse each time it get’s worse.
Henrik: Really.
Lucy: So um, yes in the past couple of times I’ve ended up going into hospitals. Um coz I thought I can’t cope, but now, they’ve said that I’ve got to just um… They can’t do anything really so, and they can’t tweak anythin’, they can’t tweak my pace maker, they can’t um change medication so I’ve just got to wait to get a new heart.
Henrik: It’s pretty mental?
Lucy: Yeah, yeah, it’s pretty mental. Um… especially ’cause it’s like in Birmingham ’cause that’s from miles away, um… I was readin’ about it on the internet today about the um, the different tests they do and, like, someone’s recovery diary for it and you wake up like a day later and you… you’ve got someone else’s heart in you? It’s a bit mad. But like um, when they a heart that’s a match, they just beep you and then you’ve just got to go.
Henrik: Really?
Lucy: Yeah.
Henrik: Flip
Lucy: And you’ve got to get to Birmingham within in a couple of hours so that they can use the heart before it’s not any good.
Henrik: Really? So have you got systems in place for that?
Lucy: Not yet, ’cause I haven’t, I’m not necessarily on the list yet but um … after Tuesday I’ll know when, if I’m on the list or…
Henrik: [Really.]
Lucy: Yeah.
Henrik: So what is the criteria?
Lucy: Um, I don’t know ’cause I haven’t seen them really. My doctors here think… One of them, used to work at the… the transplant place and she said that she thinks that I am… I should be ready for transplant, I should be on the list and my other doctor thinks that I should be on the list and, so, it’s probable I will get on the list. But um… I don’t know, they say that like your… your heart function and, and everything. Mine has deteriorated so it’s obviously not getting any better. Um… and my breathing has deteriorated as well so like the way that I’m able to… If I can’t walk very far or if I’m breathless at sitting, that’s supposed to be, they’ve got to do something so…
Henrik: Right.
Lucy: They say there’s, it’s like 4 levels of something and that’s like I’m at level 1/2. Where it’s
Henrik: [Yeah.]
Lucy: like, if you’re level 1 then you’ve got, you know they’ve got to do something… major. They wouldn’t leave you because they don’t consider it a good quality of life to… not be able to… uh breathe (laughs). It’s just a huh
Henrik: Not a good [quality] of [life]?
Lucy: [True]
Lucy: [Yes.]
Henrik: That’s
Lucy: [Um]
Henrik: why uh
Lucy: See is I can’t really get out or do anything or walk anywhere, without a lot of hassle. Um, I {guess} it’s kind of painful as well. But I don’t think… it… People can’t imagine it but it’s like when you’re running up a hill you have like the muscle ache. Um. Everytime you go like… maybe 10 steps, all the oxygen goes from your… like there’s not enough oxygen to get to your body so your head starts to go dizzy, your arms and your chest ache and your legs ache as if you’ve just run up a big hill. Like that burn sensation, lactic acid…
Henrik: Mmm.
Lucy: but it’s like that uh every, 10 steps when the heart’s not working very well cause’ it’s just not getting enough oxygen ’round the body.
Henrik: Right.
Lucy: Um… So you just say, spend the whole time really dizzy or feeling uncomfortable, so my, my technique is to just to sit still and do nothing which isn’t really that good either. (laughs)
Henrik: It’s not good for um, your other… needs. Bodily needs I suppose..
Lucy: No. ‘Cause they say, you may, the best thing to do as well is to get moving so that everything keeps goin’, like circulation and… ’cause you can get fluid build up and um… and also, I mean everything, relies on, everything relies on the heart basically, [liver]
Henrik: [Yeah.]
Lucy: and your kidneys. My kidneys are in, they ah get all fluids and stuff and they push on everything and make you feel really uncomfortable. Um…just, you know my ankles are getting swollen a lot ’cause the fluid’s there, my face get’s swollen. My skin, uh, is awful cause’ the circulation’s just crap. Uh… I’ve got bits of tree down my top.
Henrik: (laughs)
Lucy: Uh, and it’s spiky… which is nice… very but it’s nice being in nature, I guess.
Henrik: Uh huh, huh. (smiles)
Lucy: Hmm hmm. (smiles too)
Henrik: You said you don’t, you don’t get out much so…
Lucy: Uh huh.
Guy: You alright there?
Henrik: Hey, how ‘ya do? Um… It’s a project, kinda’ of an art project.
Guy: Okay.
Henrik: A book.
Lucy: (laughs)
Henrik: [I climb a]
Lucy: [Climb a tree.]
Henrik: Yeah. I climb a tree everyday.
Guy: Oh, very nice.
Lucy: Uh, huh huh. (laughs)
Henrik: Are you interested in trees?
Guy: I do like trees, yeah. Yeah, they’re very nice.
Henrik: They’re nice.
Guy: Yeah, I quite like climbing them as well so…
Henrik: Oh yeah?
Guy: Yeah.
Lucy: Huh… (laughs)
Henrik: Well maybe you should climb with me…
Lucy: Uh huh huh huh hmm. (laughs)
Henrik: … one day.
Guy: Maybe after tea yeah.
Henrik: I’ve been doing it for a year so…
Lucy: Yeah.
Henrik: One everyday.
Guy: One everyday? [For a year?]
Lucy: [For a year.]
Guy: So is this your 300 and odd tree?
Henrik: No it’s just about 93 I think.
Guy: 93? Alright.
Lucy: Uh Ha ha.
Henrik: Cheers see ya’.
Lucy: Cheers!
Henrik: That’s the kind of reaction you get.
Lucy: Hmm-mm.
Henrik: Different. Different everytime. Mostly positive.
Lucy: Yeah.
Henrik: So why did you wanna’ do this?
Lucy: Um… I don’t know I thought it be interesting… just to… think of like, how’d you end up go climbing a tree. Um. Which tree do you choose and what … what do you actually see when you’re doing your thing, I suppose…
Henrik: What the view?
Lucy: Yeah. What do you see but also like… just the time it’s taken us to climb the tree and to sit in the tree. I seen that fox has been there all the time.
Henrik: Has it?
Lucy: It’s all over the, Yeah. Um. Like who’s comin’ and goin’. All the different cars can be going. People walk and pass in the street. I don’t know it’s just… so interesting to see
Henrik: Mmm.
Lucy: what happens. Um. I guess the time of day is full like the lights goin’ down. Um.
Henrik: Lucy.
Lucy: Yeah.
Henrik: Um. Let’s say you get a heart…
Lucy: Yeah? (laughs)
Henrik: A new heart.
Lucy: Yeah.
Henrik: Or an old heart, second hand heart.
Lucy: Second hand heart yeah.
Henrik: That’s pretty mental idea isn’t it?
Lucy: Ah yeah.
Henrik: Well
Lucy: I’m kind of, yeah, I’m worried about though, what they’re gonna’ do with my old one.
Henrik: Really?
Lucy: Yeah.
Henrik: What d’you like them to do with it?
Lucy: Um… I kind of part of me would like to have it in a jar.
Henrik: Really?
Lucy: Yeah.
Henrik: Why?
Lucy: Because it’s my heart. (laughs)
Henrik: Yeah.
Lucy: We’ve been through quite a lot together in the past 35 years and I just feel quite attached to it even though it’s a bit annoying,
Henrik: Yeah.
Lucy: It’s still my heart. Uh.
Henrik: Right. But do you feel like is there an emotional attachment to it as well.
Lucy: l suppose less now. When I first started thinking about it I was really a kind of used to… cry a little bit about, losing my heart,
Henrik: Really?
Lucy: cause’ it’s like mourning it I guess,
Henrik: Yeah.
Lucy: like mourning the loss of something that you know even though it’s mine and it’s crap, ’cause it doesn’t work, it is still mine.
Henrik: Yeah.
Lucy: And it’s still been like all over the place with me. um
Henrik: Yeah totally yeah and it’s your heart, I mean flip it’s your heart.
Lucy: Yeah. So I kinda’ feel like at least I could have it in a jar somewhere. I’d like, I’m interested to see what it looks like as well. I want to see what you know, what is the bit that doesn’t really work, the
Henrik: Right.
Lucy: the left ventricle like… you know, maybe they can, use it the hospitals well ’cause I think it’s not that common what I’ve got
Henrik: Isn’t it.
Lucy: so, they might actually wanna’ have a look at it or something like I don’t know.
Henrik: Right. What about, I mean
Lucy: …somebody else’s heart…
Henrik: Have you thought about
Lucy: Hmmm.
Henrik: having some sort of lucky… I don’t know, it sounds crazy, but a burial or something?
Lucy: Um. No I think if I kept it I wanna’ keep it, keep it. I’d want to keep it with me.
Henrik: Do you think it’s likely that you would?
Lucy: Um, I’m not sure, I looked up in the internet about how, what they do with like clinical waste,
Henrik: Yeah.
Lucy: And … that sort of thing they do they just, I think they slues it, they just like get rid,
Henrik: Yeah
Lucy: and you can ask, you can keep it if you ask permission. Um… There’s like certain circumstances they’ll let you keep, stuff.
Henrik: Well like what?
Lucy: Like, um phm, like probably for medical, research and… if you, you have to get permission though to be able to keep it.
Henrik: Right
Lucy: Um… So yeah, so, I don’t know, I’d like, I’ll ask them, on Tuesday. Can I keep it?
Henrik: So shit Tuesday’s the day?
Lucy: Tuesday’s the day that I find out a lot more.
Henrik: Right.
Lucy: Um… I haven’t really thought about having somebody else’s heart yet really, either.
Henrik: Right.
Lucy: ‘Cause if you can think, about it, it’s like, for me to have a heart, somebody else gotta’ die. Unless you get um… they call it, is it a domino heart or something thing that like somebody who needs new lungs. Sometimes they take the lungs and the heart out and just have the full, lung and heart… from a donor.
Henrik: A replacement.
Lucy: uh but their heart is, was okay so they
Henrik: I see really.
Lucy: They give you like a heart from somebody who’s still alive
Henrik: Flippin heck so you can all… swap round organs.
Lucy: Yeah. Uh huh. Um… Me and my dad were thinking about it and my dad sort of… I think he’s a bit um… He doesn’t really like to think of the idea that somebody else is gotta’ die
Henrik: No.
Lucy: first. And I was thinking about like praying for a new heart?
Henrik: Right.
Lucy: It’s like, how do you pray for a new heart? When you know that, you know, please Lord can somebody have an accident so that I can
Henrik: Yeah.
Lucy: have a… a new heart. But… I guess I’ll be praying for an “18-year old athletes heart” or something.
Henrik: Tsh.
Lucy: Very nice.
Henrik: Which is a sort of an ethical…
Lucy: Uh.
Henrik: Yeah, [it's]
Lucy: [Yeah.]
Henrik: a, it’s a moral dilemma isn’t it?
Lucy: Yeah. What… Yeah. How’d you do it? Whatever happens it’s gonna’ be… a bit mental and like…
Henrik: What about… yeah I mean you can’t… it would be un PC to think through any scenario.
Lucy: Yeah.
Henrik: Wouldn’t it?
Lucy: Yeah.
Henrik: I mean you know you could say uh… I don’t know. Some awful, sort of criminal. Who’s un… unredeemable or something but then, then that’s a… that’s a very negative…
Lucy: Yeah.
Henrik: sort of… You don’t wanna’ think that anyone’s unredeemable.
Lucy: No. And… the whole um… you know part of me is like, “Is it a, is it right to have a heart?” put in any way, I don’t know. Like… a transplant because… Should I just trust God that this as my time?
Henrik: Right.
Lucy: Um.
Henrik: Bob Marley had that philosophy.
Lucy: Yeah?
Henrik: He had a(mm), cancer of the toe I think.
Lucy: Yeah.
Henrik: And he just was like, “When it’s my time, it’s my time.”
Lucy: “Yeah.”
Henrik: I’m not tryin’ to suggest that’s
Lucy: No. Huh, huh huh…(laughs)
Henrik: what you should do cause… I don’t want, you know I want you to get a new heart.
Lucy: Uh hmm.
Henrik: Obviously as …
Lucy: I think, I think obviously, in the day I will. I will get one but there’s a little bit
of me that’s like, perhaps I should just trust… A lot of it I think I want to um… I’m not too, I’d say I’m not too worried about dying,
Henrik: No?
Lucy: Because I know that I’m going somewhere better.
Henrik: Right.
Lucy: But, a lot of the reason why I want to stay alive is because of my mum and dad, [and] …
Henrik: [Yeah.]
Lucy: Um… Because they both love me lots and I’m their only child and
Henrik: Yeah.
Lucy: Um… They’d both be devastated if I did die.
Henrik: Yeah of course.
Lucy: And they both, they don’t rea… I don’t know. They’re coming to… church more and stuff but they don’t have a, really strong faith, I don’t think like me.
Henrik: Yeah.
Lucy: Um…
Henrik: So how do you have faith?
Lucy: How’d you [have faith]?
Henrik: See when you’ve given… In a way you’ve been given this {dickey}
Lucy: ticker
Henrik: ticker (smiles)
Lucy: uh huh, huh hmm (laughs)
Henrik: You know and like, how do you kind of have faith and, and also have… you know with that, with that… you know, do you know what I’m getting at?
Lucy: Yeah.
Henrik: How does that work?
Lucy: Um, because I don’t think that God me a {dickey} ticker.
Henrik: Okay.
Lucy: As in, I don’t think He was like I’ll make Lucy and she’s gonna’ have a dodge of heart. Um… It’s more like I know that God intended the world to be good and perfect, but then somehow we’ve messed up by choices we’ve made and I think that my heart condition must be the result of something along the lines generation or I [don't know.]
Henrik: What chemical… or…
Lucy: Maybe.
Henrik: misuse or…
Lucy: Yeah. I don’t know anything. I don’t know how it works but
Henrik: Yeah
Lucy: somewhere along the line, it’s quite not right and um… and I, cause I believe that God’s good.
Henrik: Yeah.
Lucy: Completely so something that’s bad, can’t be from God so…
Henrik: Right.
Lucy: It’s gotta’ be from the enemy,
Henrik: Okay.
Lucy: really. Um… or just you know part of the, part of the fall, part of the way that you know, the choices we’ve made over donkeys years
Henrik: Yeah.
Lucy: have all come together and this is just one of the things that…
Henrik: So ‘kay, how do you…
Lucy: I’ve got. Uh huh. (laughs)
Henrik: How do you uh, I don’t wanna’ get too much into this sort of thing but [um,]
Lucy: [Yeah.]
Henrik: sort of… massive medical advances were made…
Lucy: Yeah.
Henrik: by the Nazis.
Lucy: Ah… really? Okay.
Henrik: Yeah. So, in a way, those, those kinds of advances have helped people to live.
Lucy: Um hmm.
Henrik: You know live longer and like, (ya’) like you say like live…
Lucy: Oop.
Henrik: Um.
Lucy: I’m cheating now.
Lucy is now not off the ground which was why she apologised
Henrik: Don’t worry no it’s fine.
Lucy: Uh. Yeah.
Henrik: Um.
Lucy: Pins and needles
Henrik: No it’s fine, it’s fine. Um… So in terms of a moral or kind of… things coming from bad things and good things like
Lucy: Yeah.
Henrik: where, where things come from… Do you see what I mean? [Like...]
Lucy: [Yeah.]
Henrik: How do you… let’s say you were saved by a, a medical advancement that came from… horrible abuse… in, in Nazi… some Nazi situation?
Lucy: Um. I don’t think that God intended that to happen
Henrik: Right.
Lucy: But it says in the Bible that God brings good things out of bad.
Henrik: Right.
Lucy: So that’s my
Henrik: Yeah sure, so that’s how you reconcile it.
Lucy: That is my reconciliation of [it]
Henrik: So, so…
Lucy: I guess.
Henrik: Yeah.
Lucy: But yeah, even really terrible things can turn out to be good.
Henrik: Yeah.
Lucy: It’s just like even terrible things like my… having a cardiac arrest [and]
Henrik: Right.
Lucy: Yeah and nearly dying a couple of times and all that, I think… has made, you know it’s kinda’ changed my life for the better.
Henrik: Has it?
Lucy: And my family’s life for the better.
Henrik: Really?
Lucy: [Yeah.]
Henrik: [How?]
Lucy: Um. It’s brought us closer.
Henrik: Right.
Lucy: I think before we were so independent and tried to live on our own and do our own thing…
Henrik: Right.
Lucy: We’ve had to sort of, come together, and I only have a small family…
Henrik: Yeah.
Lucy: Like there’s three of us, me, my mom, and dad, we all lived separately.
Henrik: Yeah.
Lucy: We’d still be living completely separately, not speaking to each other very often,
Henrik: Right.
Lucy: but now we’ve got… stuff we have to talk about.
Henrik: Yeah.
Lucy: And… spend more time together.
Henrik: Right. So… God… I mean… What’s it like nearly facing death, I mean that close to it?
Lucy: Um… (sighs) Process if it hurts, isn’t very nice?
Henrik: Yeah.
Lucy: I think if I’d gone the first time, it’d been fine. But the cardiac arrest, coz I don’t remember anything about it, so that would have been easy. Um, it sounds glib… I guess (laughs) but um, it’s not… um…
Henrik: I mean you’re quite a rare woman then I suppose.
Lucy: Yeah.
Henrik: Most people don’t. In, in the west anyway.
Lucy: What…
Henrik: Well have that… kind of… I mean like you know, I’ve been on the motorway and nearly kind of snuffed it.
Lucy: Yeah.
Henrik: like couple of times, come close you know.
Lucy: Yeah.
Henrik: Um… You know I might close during this year, might fall out of a tree or something.
Lucy: Yeah.
Henrik: Pph, uh, um, I’m gonna’ put myself in the… you know I’ve, I’ve actually…
Lucy: I’ve got something climbing up my leg I think.
Henrik: Really?
Lucy: I don’t know. No maybe not. Bloody annoying, whatever it is.
Henrik: Really?
Lucy: Yeah. Carry on.
Henrik: How do you feel about that?
Lucy: What? Death?
Henrik: I wanna’ come back to that but actually while I’ve just said it, you know you’d like… you’ve got… you know you’re trying to cling on to life.
Lucy: Yeah.
Henrik: And you got other people, kinda’ throwing it away?
Lucy: Um…
Henrik: I mean like smoking for example or… I don’t know.
Lucy: Yeah.
Henrik: Do you think about that or doesn’t it really… ?
Lucy: Sometimes I think when people moan about things.
Henrik: Right.
Lucy: I just think um… I’ve found it…
Henrik: It’s raining.
Lucy: It’s peeing it down.
Henrik: Uh ha,ha,ha. (laughs)
Lucy: Um… I think I’ve, cause everything just had to just stop.
Henrik: Yeah.
Lucy: Yeah like my career, holidays, money, um… assuming relationships really, everything’s had, everything I used to live for has had to stop, everything I knew that I’ve relied on just had to stop.
Henrik: Right.
Lucy: And so sometimes I just sort of, I wish people could like be a bit more chilled out about things
Henrik: Right.
Lucy: and not worry about it so much cause, they sort of worry about, oh I’ve not got this job, I’ve not got that job, or I can’t go here or I can’t do that and I just think oh it’s not that bad, surely.
Henrik: Yeah.
Lucy: Uh.(laughs)
Henrik: Yeah.
Lucy: Um
Henrik: People are spoiled you mean?
Lucy: (Like) Yeah maybe. I don’t know. It’s just that they seem to worry about things that are really um petty
Henrik: Yeah.
Lucy: um… at times, and…
Henrik: How do you deal with it? ‘Cause to be honest, you seem to, you seem to deal with it very well?
Lucy: Um.
Henrik: Or do you?
Lucy: No suppose I do, really. I just um…
Henrik: I mean your own…
Lucy: I d… , I don’t know. I kind of just, I am really chilled out.
Henrik: Right.
Lucy: And that’s one thing I’ve had to learn to do. Uh just everythin’ is slow and… everything just goes and yeah I know when I’ve been in hospital, in the hospital wards. Um… You’ve got people in there and they’re like I just wanna’ get home, hey I wanna’ get home, hey I can’t cope with this it’s… , awful being in hospital and um, I just wanna’ get back to normal being and I guess I must’ve felt like that at first, but I’ve just had to just sort of relax and just take…
Henrik: Go with it.
Lucy: Go, yeah, go with it, take it as it is.
Henrik: Right.
Lucy: Um, and I have like a hope that one day if things will get better again [like]
Henrik: [Right.]
Lucy: I think this time of year and everyone’s going on holiday,
Henrik: Yeah.
Lucy: you see all this stuff on facebook, or, you know all of the so and so, only 2 more days till I get to go off to the, the sun and, you know in so and so place and it’s really hot and then sat by the pool doing this
Henrik: Right.
Lucy: and I get a bit jealous of that ’cause I can’t
Henrik: Yeah.
Lucy: travel really at the moment
Henrik: Yeah.
Lucy: and… it’s like things I used to like doing like… you know just going on holiday and sitting by the pool
Henrik: Yeah.
Lucy: in the sun. I can’t go by the pool and sit even if I wanted to ’cause of the medication I’m on. so um…let alone, travel somewhere or put up with the heat um… it just all too much.
Henrik: Yeah.
Lucy: But there’s a bit of me that’s thinking like, “Yeah and maybe one day, I’ll get to do that again.”
Henrik: Yeah.
Lucy: Um… And there are times I just think uh… You know, if it isn’t gonna’ get any better than this then I don’t really want to… carry on but I have just got that hope that it will get better.
Henrik: Right.
Lucy: Um… It’s not the death that’s the problem at all, it’s the dying painfully that’s the problem.
Henrik: Really?
Lucy: Yeah. ‘Cause I mean if you have a cardiac arrest, it’s pretty quick.
Henrik: Right.
Lucy: Um. But, when I had the kidney failure and the organ failure, that was like hell on earth because I was awake but I had the temperature and
Henrik: [Right.]
Lucy: [had] this sort of
Henrik: Yeah, yeah, yeah, yeah, I remember that was horrible.
Lucy: A hundred and whatever and, and in intensive care for
Henrik: Yeah.
Lucy: about 5 days I think it was and then H.D.U. and um, you know things comin’ out your neck, people sticking things in your neck and dialysis machines and, and all that and… not being able to sit up or do anything…
Henrik: Yeah.
Lucy: That was horrible.
Henrik: Yeah. Yeah, yeah.
Lucy: Um… Yeah I kind of… I know it has made me reconsider stuff about you know like they talk about euthanasia.
Henrik: Right.
Lucy: Um, I’ve always thought no. Definitely not because um… I don’t, I know, I don’t think I have the would because of my faith but I think it’s you know my time and all that stuff. But, to get stuck in a body that you can’t actually do anything,
Henrik: Mmm.
Lucy: I would then sort of think, I really would want to just go.
Henrik: Right.
Lucy: Um…Yeah it’s quality life, it is really quality of life.
Henrik: Yeah.
Lucy: That’s simple and…
Henrik: Can I just, can you just, can I just pass this to you and I’m gonna’ climb down a bit?
Lucy: Yeah.
Climbing down…
Henrik: Yeah, yeah. ’ Kay.
Lucy: Yeah.
Henrik: It’s still on so.
Lucy: Ah hey.
Henrik: Um… Can you tell me… um… Can you tell me more about this new heart thing?
Lucy: What new heart thing?
Henrik: Well… Have you heard… I mean have you heard about people that have new hearts? That get memories of… They get like um…
Lucy: Yeah.
Henrik: You know anything about that?
Lucy: Um… They say, well, everybody has spoken to says that it’s not true, that the heart doesn’t have a mem’ry, but it’s anecdotal evidence I suppose that people say oh yeah I started to like this food or had this feeling or whatever. Um… but I’m not sure. I don’t mind, as long as I still like Marmite. I’ll be okay.
Henrik: Uh, huh, huh, huh, huh, ha, ha, ha (laughs)
Lucy: I was a bit worried that I might not like Marmite anymore.
Henrik: Right.
Lucy: But then again if I don’t like her, I suppose I won’t be to worried about not having it.
Henrik: You like something else?
Lucy: Yeah.
Henrik: Turnips.
Lucy: Yeah. I mean, if I, I don’t know as well I, if I have one now… they say like the average is, 10 well not average but, 10 years.
Henrik: 10 years for what?
Lucy: For it to, it lasts 10 years.
Henrik: Really?
Lucy: Yeah. Some I mean some people have had them like nearly 30, some people like 20, 25 years, but they do a lot of times they pack it, pack in after about about 10 years.
Henrik: Right.
Lucy: So I don’t know [if you get]…
Henrik: It’s buying you time.
Lucy: Yeah. If I get another one,
Henrik: Right.
Lucy: Um, by then they might, be able to do stem cell…
Henrik: Right.
Lucy: things. I saw something on television about making hearts and they got like a rats heart and they got like the skeleton of the enzymes that make, forms the shape, um, from a donor.
Henrik: Mm.
Lucy: And then they dripped the um, stem cell over it in this liquid or something and it actually made a new heart, grew a heart ’round the skeleton… of the enzymes. And then they actually got it to beat. And they’re trying to do that with like human hearts that could hopefully by the time I need a new one, they can build one from my own
Henrik: Body.
Lucy: bod…, Well yeah, my own stem cells and then it would have less, shouldn’t reject cause’ it’s my…
Henrik: ‘Cause it’s your own.
Lucy: Yeah.
Henrik: Yeah, yeah, yeah.
Lucy: But then again I wouldn’t if I’ve got a congenital heart problem if it would just form the same…
Henrik: Same thing.
Lucy: Huh, huh, huh.
Henrik: Yeah, yeah.
Lucy: Freaky, isn’t it? I don’t quite understand it.
Henrik: Yeah, yeah. It’s pretty amazing.
Lucy: So.
Henrik: So what… like… I don’t know… Might sound sort of, I don’t know. Do you think about… kind of um… you know like a…
(guys in background conversing)
Lucy: Hey.
Guy: This is the tree. You made it?
Lucy: We did. Yeah.
Guy: Oh sorry. Are you filming it?
Henrik: A recording yeah.
Lucy: Huh, huh, huh, huh. (laughs)
Guy: See you later…
Henrik: No worries, no worries. Um. I don’t know. What do you think about? Do you have any thoughts on kind of… Okay no, I would, what I’d rather ask is… Cause’ I was asking this guy yesterday
Lucy: [Mm.]
Henrik: [like] if he, you know, let’s say he lived, however long.
Lucy: Um, hmm.
Henrik: and he’s on his death bed kind of thing,
Lucy: Yeah.
Henrik: What would he like to have achieved?
Lucy: Yeah. You wouldn’t ask me that?
Henrik: Can I ask you that?
Lucy: Huh, huh, huh, huh, hmm. (laughs) (takes a deep breath) Ah that’s, that is really hard one.
Henrik: Is it?
Lucy: Yeah. It’s weird because it’s like um… I guess all this health stuff
Henrik: Mm mm.
Lucy: is like my biggest achievement.
Henrik: Okay.
Lucy: It’s like surviving…
Henrik: Right.
Lucy: something.
Henrik: Yeah.
Lucy: All I could ne…, I’ll never have to… um… I don’t know, I guess I’ll never have to sort of come up against anything that will be harder than this.
Henrik: Yeah.
Lucy: Um, so…
Henrik: Fighting your own body.
Lucy: Yeah. So it’s kind of massive achievement um, I think. And… I’d yeah. I just wanna’, I want to be able to live life and um, serve God. And… yeah I’d, I just like, I, my careers before like helping people and influencing people in a good way. I guess. Caring for people so I just wonder if all this experience of what I’m going through will help, in the future as well.
Henrik: Right.
Lucy: So I mean I don’t know… how. Maybe I could be used as an example to people to keep going with stuff. Um… So yeah, I just wanna’ yeah, that’s what I wanna’ do really and this has actually given me opportunity to do what I wanted to do. ‘Cause it’s, being ill has released me from like work.
Henrik: Right.
Lucy: Yeah. Um… And so before when I was battling, sort of trying to fit work in and then trying to do stuff in the evenings and relate to people and be part of community, and actually being ill has given me time to do voluntary work and to work with people who really need.
Henrik: Right. Except for now now it’s gone too far.
Lucy: For now it’s gone too far and it’s frustrating ’cause I’m kind of a, I can’t do anything person at the moment.
Henrik: Yeah, yeah.
Lucy: And uh, that’s really hard for me. But I’ve learned to live with like… not so much money.
(pause) Is it still working?
Henrik: Yeah I’m just checking how much time is left.
Lucy: Mm.
Henrik: Yeah.
Lucy: Um, I’ve learned not to… have much money
Henrik: Hmm.
Lucy: and just to be satisfied with doing little bits
Henrik: Mm.
Lucy: and… if you get what I mean, it’s kind of good training, so anything from now on’s a bonus.
Henrik: Right.
Lucy: If a get a little job, even a partime job,
Henrik: Yeah.
Lucy: I’ll [get a little bit]
Henrik: [you’ll appreciate it.]
Lucy: more money.
Henrik: Yeah, yeah, yeah.
Lucy: It will be better that I have at the moment.
Henrik: Okay.
Lucy: So…
Henrik: So let’s say you were magically better,
Lucy: Yeah.
Henrik: or miraculously better you might prefer to say. What would do, what’s the first thing you’d do?
Lucy: Uh um…
Henrik: Go and lie in the sun. And write on your facebook page, ‘I’m in the sun!’.
Lucy: I’d like to go swimming in a really big swimming pool in a really sunny place.
Henrik: Not in the sea, or a lake?
Lucy: No, no. I don’t know why.
Henrik: A swimming pool?
Lucy: A swimming pool. Just that sort of peaceful still swimming pool.
Henrik: Yeah.
Lucy: Probably nobody else about… just.
Henrik: Okay, how ’bout a bit of mist on the, on the water?
Lucy: Uh, maybe.
Henrik: Early morning?
Lucy: May…ah no, no. It’s gotta’ be sunny.
Henrik: Okay bright.
Lucy: Yeah.
Henrik: Midday?
Lucy: Sunny, little geckos, lizardy things running around
Henrik: Okay.
Lucy: maybe.
Henrik: Right.
Lucy: Um… And be able to drink lots of fluid
Henrik: Right.
Lucy: like
Henrik: Booze?
Lucy: No. Orange, like fizzy orange juice or fizzy lime or
Henrik: Right.
Lucy: Whatever, with ice in
Henrik: Yeah.
Lucy: ’cause I’m not allowed to drink lot of fluids.
Henrik: Okay. Really?
Lucy: No, ’cause it gets collected in my body.
Henrik: I see, yeah.
Lucy: So just to be in a hot place, be able to drink like a massive great big drink of orange Henrik.
Henrik: Right.
Lucy: (laughs) and sit in a swimming pool and just float around. ‘Cause, I don’t know, freedom in sort of floating around in the swimming pool. (pause) That’d be cool.
Henrik: I like that. Well I’m hoping for that. Um… I wa.. what I wanted to ask you was
did you, let’s say you got the call tomorrow, the beep, or Wednesday, let say, after, you know.
Lucy: Yeah.
Henrik: How, how long would it be before you’d recover, and how recovered would you be?
Lucy: Um, the diary I read on the internet today, the guy was out within 3 weeks.
Henrik: Right, and what could he do after that?
Lucy: Um, he was able to walk, um, and go on like treadmills and go on bicycles and
Henrik: Right, so he could climb a tree for example?
Lucy: Probably yeah.
Henrik: Right. So we’re gonna’ hope that, that happens.
Lucy: Before the end, yeah.
Henrik: Yeah?
Lucy: Yeah. Yeah.
Henrik: Yeah? I really want that to happen.
Lucy: That’d be cool.
Henrik: That’d be really cool. I’d love to climb a tree with you and like sit on the top of the tree.
Lucy: You could see my big scar.
Henrik: I love, I would love it. (laughs)
Lucy: That’s the worst thing.
Henrik: That’s the worst thing.
Lucy: They gonna’ cut you out there and they cut you, they sew at your sternum.
Henrik: Flippin’ heck.
Lucy: It’s rainin’.
Henrik: It’s pissing with rain and we’re under a tree so it’s not that bad.
Lucy: Huh, huh.
Henrik: But yeah, um, I think we might nearly be out of time here. Uh, a few minutes left. Can’t tell. Um,
Lucy: I think I’d like to do it before Christmas.
Henrik: Yeah?
Lucy: Mm mm. Knew why I had a feeling it be before Christmas.
Henrik: Um. Oh God, okay I’m gonna’ turn this off. Shall we go? I wonder if there’s a better spot to stand.
Lucy: My jacket.. and my glasses.
Henrik: I’ll go and get it.
Lucy: My glasses. I don’t know where are my glasses?
Henrik: They’re in your pocket. Shall we stand over here cause’ it’s probably drier…
