WEBVTT - What is a stem cell transplant?

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<v Speaker 1>It's Chronic Time, the podcast you come to if you're

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<v Speaker 1>fucking sick.

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<v Speaker 2>What a lovely way to start happy with your language

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<v Speaker 2>right off the back.

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<v Speaker 1>You know what, your mom You're always like that was

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<v Speaker 1>too far, and then your mom's like, I really liked

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<v Speaker 1>that bit. Brook It is Brooke and Monty and both

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<v Speaker 1>have chronic illnesses and we are doing this chronic podcast

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<v Speaker 1>for you. If you have a chronic illness, or if

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<v Speaker 1>you know somebody who does have one, maybe you'll get

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<v Speaker 1>a little something something out of it.

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<v Speaker 2>But yeah, Brookie, do you know what I am not

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<v Speaker 2>getting something out of at the moment? What my girls fighting? Like,

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<v Speaker 2>I just I can't even begin I'm like, I don't

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<v Speaker 2>think it's normal, Like all the time, all day, every day.

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<v Speaker 2>Is that normal?

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<v Speaker 1>Yeah? Oh, look, you don't ever want to benchmark your

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<v Speaker 1>kids off mine, because we literally cannot have my older two.

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<v Speaker 1>I've got three, three boys, and the older two we

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<v Speaker 1>are so limited what we can do because of the

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<v Speaker 1>way those two fight. Not physical, but the constant, niggling,

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<v Speaker 1>bickering assholeness that goes on is so unpleasant to be

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<v Speaker 1>around that we literally spend our whole time dividing and

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<v Speaker 1>conquering our kids.

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<v Speaker 2>Yeah, yeah, it's really like it really breaks my heart.

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<v Speaker 2>Sometimes I'm like, oh, totally, And I'm like, I don't

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<v Speaker 2>know where you get this from. Like, you know, James

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<v Speaker 2>and I and not walking around the house speaking to

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<v Speaker 2>each other rudely, Like why do they just have to

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<v Speaker 2>be so picky at each other all the time. I

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<v Speaker 2>just am like this week, Oh, I think if they

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<v Speaker 2>stopped fighting of just a little bit less, even our

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<v Speaker 2>house would be so beautiful and peaceful. So just to stop.

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<v Speaker 1>I say that to Sam all time. I'm like, could

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<v Speaker 1>you imagine how different would be if those two got along?

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<v Speaker 1>And every time I see siblings playing together, or like

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<v Speaker 1>the other day I dropped Alah on a buddy off

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<v Speaker 1>at the movies and there was this kid I knew

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<v Speaker 1>there with his younger brother and they're only like a

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<v Speaker 1>year and a half apart, and I'm like, oh my god,

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<v Speaker 1>the two of you are just doing that together and

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<v Speaker 1>you're not arguing. You're just standing there buying a ticket

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<v Speaker 1>and popcorn, and it's like your mates. I can't help

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<v Speaker 1>you get jealous.

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<v Speaker 2>Oh I would too, and my littlest one. So I

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<v Speaker 2>have a six and a ten year old and my

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<v Speaker 2>youngest two six. You know, she's super cute and all

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<v Speaker 2>of her friends are so little and cute. You know

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<v Speaker 2>that age is awesome, gorgeous. Yeah, And when her and

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<v Speaker 2>her friends are over, my oldest like is obsessed with

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<v Speaker 2>all of her friends, like thinks that they're so beautiful

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<v Speaker 2>and so cute. I'm like, why why don't you think

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<v Speaker 2>that about your own sister? You know why?

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<v Speaker 1>I know I think that too. When Alo has a

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<v Speaker 1>friend over and back to want to go out and

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<v Speaker 1>jump on the tramp and stuff with him, I'm like,

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<v Speaker 1>he's got this friend here because you're not his friend.

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<v Speaker 1>I feel like in siblings, to the oldest one dictates

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<v Speaker 1>what the relationship be like, although in yours it's a

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<v Speaker 1>little different, isn't it. Tully, your six year old the boss.

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<v Speaker 2>Yeah, it used to be. It used to be, but

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<v Speaker 2>I yeah, it used to be that she was the boss,

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<v Speaker 2>and that was just because she was a pretty tough

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<v Speaker 2>kid for the first you know, four years five, Yeah,

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<v Speaker 2>and so she just demanded a lot more attention. But

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<v Speaker 2>now and she could be like quite harsh to eatie,

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<v Speaker 2>but now it's like the opposite, Like Tully is trying

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<v Speaker 2>and it's almost like easier, not too late. No, No,

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<v Speaker 2>too much water under the bridge. Yeah.

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<v Speaker 1>It's hard, isn't it? Because I look at the dynamic

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<v Speaker 1>between my older children, it really reminds me of what

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<v Speaker 1>it was like for my sister and I. So I

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<v Speaker 1>hate the word triggers, but it triggers a lot for

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<v Speaker 1>me When I see certain behavior. I'm like, no, no,

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<v Speaker 1>like this is gonna affect your relationship getting old when

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<v Speaker 1>you guys are getting older. But I already see it

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<v Speaker 1>because Backs is so nasty to Arlo, Like it's like

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<v Speaker 1>back Arlo cops. All of Baxter's anxiety and anger and

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<v Speaker 1>everything comes out on Arlo can just walk into a

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<v Speaker 1>room and he's walked in there the wrong way. It's awful.

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<v Speaker 1>And I can just see that. As Arlo's getting older,

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<v Speaker 1>I'm like, you're losing him because he's not going to

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<v Speaker 1>be He's still young enough that he looks to you

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<v Speaker 1>and it's like, oh my older brother like kind of

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<v Speaker 1>cool where that's going to flick at some point and

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<v Speaker 1>you've lost him.

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<v Speaker 2>And so you don't think it's getting any better as

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<v Speaker 2>your oldest backs gets older.

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<v Speaker 1>No, what's happening as opposed to them fighting more, His

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<v Speaker 1>backs has gone full teenager, and he's just more retreated

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<v Speaker 1>by himself more Yeah, ignores him, which also upsets me

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<v Speaker 1>because I'm like, you guys are the only time they

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<v Speaker 1>communicate is when they're fighting. But we're not alone in

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<v Speaker 1>this chuck. Like I always look at other kids and go, oh,

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<v Speaker 1>you guys are They're so awesome, and then their parents

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<v Speaker 1>like they do not stop fighting. Yeah, I just what

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<v Speaker 1>siblings do.

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<v Speaker 2>If anyone is if any of you guys have any tips, like,

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<v Speaker 2>I don't know, just like I'm all at the moment

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<v Speaker 2>trying to think of like ways to get them to

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<v Speaker 2>work as a team, you know, So anyone has any ideas,

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<v Speaker 2>let me know please.

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<v Speaker 1>Yeah, I know it is. It's really tricky. It just

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<v Speaker 1>makes it unenjoyable, which is disappointing because then you're like, god,

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<v Speaker 1>I'm just wishing these days away because you guys are

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<v Speaker 1>busting my ball so much. Anyway, something a bit nicer

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<v Speaker 1>than getting our balls busted is tricky what you're up to.

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<v Speaker 1>After we finished recording.

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<v Speaker 2>Yes, I have connected with a beautiful woman who has

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<v Speaker 2>been listening to our podcast. So she was listening to

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<v Speaker 2>our podcast and sent me a message and thank you

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<v Speaker 2>so much for the podcast. My husband's been diagnosed with

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<v Speaker 2>MS recently, and they've both been listening and finding it

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<v Speaker 2>really helpful. So that, you know, made me feel warm

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<v Speaker 2>and fuzzy. And it so happens that she's in my area.

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<v Speaker 2>So we're meeting for a coffee today. So nice, isn't it?

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<v Speaker 1>Grade is it when somebody listens and connects and so

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<v Speaker 1>it has been newly diagnosed.

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<v Speaker 2>Yet newly die he's only like a few months in.

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<v Speaker 1>Yeah right, God, that's so rough. I always feel like

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<v Speaker 1>I'm surprised when I hear guys have been diagnosed as well.

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<v Speaker 1>I feel like MS is so linked to women, not

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<v Speaker 1>so much to men.

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<v Speaker 2>Yeah, it's definitely more prevalent in women than it is men.

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<v Speaker 2>Women from like, I think it's twenty five to forty

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<v Speaker 2>five predominantly.

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<v Speaker 1>Yeah right, Okay, Wow, that's so nice. Who's gonna Who's

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<v Speaker 1>going to pay for the coffee? Though? You know, in

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<v Speaker 1>a situation like that, it gets to the end where

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<v Speaker 1>she'll be like, thanks so much for your time, Brook,

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<v Speaker 1>all pay, But then you'll be so awkward you'll insist

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<v Speaker 1>on pay, and it'll be your whole parlava at the paystation.

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<v Speaker 2>Yeah, at the paystation. Yeah, We'll be totally will be

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<v Speaker 2>it always is, let's be honest.

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<v Speaker 1>That's so funny. Anyway, Well that's lovely you're doing that,

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<v Speaker 1>but let's do a check in. I realized we're getting

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<v Speaker 1>to these podcasts and we kind of never check in

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<v Speaker 1>with where we're at at the moment. So how are

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<v Speaker 1>you going?

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<v Speaker 2>Good? Look, I'm going good, you know, like good for bad,

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<v Speaker 2>like good in terms of being you know bad. No, Look,

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<v Speaker 2>I'm doing okay. I'm a little bit nervous today actually

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<v Speaker 2>because I am. I've got my neurologists this afternoon and

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<v Speaker 2>the like she wanted me to go and get this

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<v Speaker 2>new test done. It's called a neurofilament test. I don't

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<v Speaker 2>know if anyone listening has had one.

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<v Speaker 1>What is that? What does it involve?

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<v Speaker 2>It's literally a blood test. Yeah, it's pretty amazing. So

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<v Speaker 2>it's brand new. They've been doing it in the US

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<v Speaker 2>and the UK for years, but it's brand new here

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<v Speaker 2>and apparently it's amazing. Everyone's saying that it's incredible. So

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<v Speaker 2>what it does is it can test in your brain

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<v Speaker 2>the level of disease progression. So yeah, and they give

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<v Speaker 2>you a score after you do this test. So I

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<v Speaker 2>did the test like about a month or so ago,

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<v Speaker 2>and the results came back and my GP told me

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<v Speaker 2>what the results were, because I pested her to tell me,

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<v Speaker 2>and she said, look, I shouldn't tell you because I

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<v Speaker 2>don't you know, she's not a neurologist, and she's like,

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<v Speaker 2>I don't know what the results mean or whatever. But

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<v Speaker 2>she told me anyway, and she told me what my

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<v Speaker 2>score was, and so then we know, both I'd research

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<v Speaker 2>the hell out of it already and then we'll you know,

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<v Speaker 2>looking it up to see what it all meant. And

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<v Speaker 2>like from my research, it looks like it's quite high,

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<v Speaker 2>like it's quite elevated. But then apparently you have to

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<v Speaker 2>combine it with all these other factors of like on

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<v Speaker 2>the disability scale or and things like that. So I, yeah,

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<v Speaker 2>I don't really know what it means if it is,

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<v Speaker 2>you know, if it is bad or it's fine, But

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<v Speaker 2>I'll find out this afternoon. And yeah, depending what happens

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<v Speaker 2>will depend on what my next kind of treatment is.

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<v Speaker 2>So I don't know if I've mentioned on here before

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<v Speaker 2>or but I've been talking to my neurologists a lot

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<v Speaker 2>about doing the stem cell transplant treatment. They do it

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<v Speaker 2>here in Sydney where I live. They take I think,

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<v Speaker 2>just not too many people a year to do it,

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<v Speaker 2>and there's an eligibility test, so you have to be

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<v Speaker 2>eligible to do it. You have to check lots of

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<v Speaker 2>boxes and there are a lot, so not many people

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<v Speaker 2>get in and able to do it. A lot of

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<v Speaker 2>people pay like hundreds and thousands of dollars and go

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<v Speaker 2>and have this treatment done in other countries, like in Russia,

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<v Speaker 2>in Mexico, in Singapore, like, loads and loads of people

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<v Speaker 2>do this.

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<v Speaker 1>I know somebody who had MS who went to Germany

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<v Speaker 1>and did it, and yeah, had incredible, incredible results for her.

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<v Speaker 1>But can you talk me through what the process exactly is.

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<v Speaker 2>Yeah, it's pretty full on. It's like the last option.

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<v Speaker 2>So even to like, there's lots of criteria that you

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<v Speaker 2>have to meet to be able to do it. But

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<v Speaker 2>one of them is that you have to have failed

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<v Speaker 2>at least three treatments. And so if it looks like this,

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<v Speaker 2>my third treatment isn't working, then I will be eligible

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<v Speaker 2>and that's determined by your urologist. And yeah, so if

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<v Speaker 2>that's the case, it's basically they take out, you go

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<v Speaker 2>into hospital, they take out actually before you even going

0:10:16.440 --> 0:10:19.040
<v Speaker 2>to hospital, you have to do chemo. I think you

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<v Speaker 2>have to do like four or six rounds of chemo.

0:10:22.120 --> 0:10:25.520
<v Speaker 2>So you do that over a few months, and then

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<v Speaker 2>you go into the hospital and they take out all

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<v Speaker 2>your cells, basically kill your entire immune system, and then

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<v Speaker 2>freeze the cells and do what they do and then

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<v Speaker 2>put them back into your body.

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<v Speaker 1>And then like so the kind of healthy cells, they

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<v Speaker 1>get rid of all of the cells that aren't serving

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<v Speaker 1>you and put in other cells.

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<v Speaker 2>Yeah exactly, Yeah, And then that process takes quite a while.

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<v Speaker 2>From what I can understand, I think you're in hospital

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<v Speaker 2>for like a good couple of months, and during that time,

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<v Speaker 2>there's a period where you have to be in isolation

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<v Speaker 2>because because you're rebuilding your immune system, it's really dangerous

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<v Speaker 2>to be around anyone who catch anything, so you might

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<v Speaker 2>be in isolation I think for a few weeks of

0:11:09.280 --> 0:11:12.840
<v Speaker 2>that time. So it's pretty hectic. And then when you

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<v Speaker 2>when you get home after this, you have to be

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<v Speaker 2>super careful with everything, like not getting any germs. One

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<v Speaker 2>one person that I've been kind of messaging with that

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<v Speaker 2>has had it done has said, you know, like her

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<v Speaker 2>kids had to when they get home from school, would

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<v Speaker 2>have to like take their shoes off at the door,

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<v Speaker 2>wash their feet, wash their hands and all that kind

0:11:31.760 --> 0:11:34.560
<v Speaker 2>of stuff before they could come inside. They don't recommend

0:11:34.600 --> 0:11:37.720
<v Speaker 2>having takeaway or any food that hasn't been cooked inside

0:11:37.800 --> 0:11:42.880
<v Speaker 2>your house. Yeah, you know, for fear of germs and things.

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<v Speaker 2>So it's pretty intense, i'd say, from what I reach, Yeah,

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<v Speaker 2>from what I can understand, it's basically like a year

0:11:49.920 --> 0:11:53.920
<v Speaker 2>of your life that you would be like not you know,

0:11:54.000 --> 0:11:57.920
<v Speaker 2>not functioning and kind of just out of the game. Yeah,

0:11:57.960 --> 0:12:00.679
<v Speaker 2>but look by the same token you would take that

0:12:00.920 --> 0:12:04.119
<v Speaker 2>if it meant that it was going to stop the progression,

0:12:04.440 --> 0:12:07.080
<v Speaker 2>so totally it all lost.

0:12:08.360 --> 0:12:10.200
<v Speaker 1>Yeah, and it is weighing it all up, and it's

0:12:10.240 --> 0:12:14.360
<v Speaker 1>so confronting when you know it's and it's only hours

0:12:14.440 --> 0:12:17.080
<v Speaker 1>until we know kind of I guess if that's what

0:12:17.120 --> 0:12:19.480
<v Speaker 1>you're looking at, or if this is working the treatment

0:12:19.480 --> 0:12:21.880
<v Speaker 1>that which is your third treatment is working for you

0:12:22.720 --> 0:12:25.560
<v Speaker 1>or not. And I think just taking it back a step,

0:12:25.679 --> 0:12:28.920
<v Speaker 1>you googling in the meantime between speaking to your doctor

0:12:29.080 --> 0:12:32.719
<v Speaker 1>is so fucking intense, Like, I know, you need to

0:12:32.760 --> 0:12:35.520
<v Speaker 1>know everything, yeah, but your GP can't read though. It

0:12:35.720 --> 0:12:38.600
<v Speaker 1>goes against so like there's so many different factors to

0:12:38.640 --> 0:12:40.800
<v Speaker 1>be considered in this and you've only got one of

0:12:40.840 --> 0:12:42.520
<v Speaker 1>them at the moment, and you're blame googling.

0:12:42.800 --> 0:12:46.360
<v Speaker 2>Of course, I am like anyone would you can't help it?

0:12:46.400 --> 0:12:48.440
<v Speaker 2>Like you can't help it. And mine Neu Religius, was

0:12:48.440 --> 0:12:52.560
<v Speaker 2>overseas and she was emailing to lock in this appointment

0:12:52.559 --> 0:12:55.880
<v Speaker 2>when the results came back, and and I said, can

0:12:55.920 --> 0:12:57.800
<v Speaker 2>you just tell me quickly, like this is the score?

0:12:58.120 --> 0:13:01.280
<v Speaker 2>So is that good or bad? Like, just tell me that?

0:13:01.480 --> 0:13:03.280
<v Speaker 2>And she's like, I can't just tell you that. I

0:13:03.320 --> 0:13:05.240
<v Speaker 2>have to put it on the curve and see where

0:13:05.280 --> 0:13:06.960
<v Speaker 2>you fit on the curve and what it looks like.

0:13:07.040 --> 0:13:08.080
<v Speaker 2>It's not that simple.

0:13:08.760 --> 0:13:11.480
<v Speaker 1>So yes, So from reading from the naked eye, she

0:13:11.640 --> 0:13:13.839
<v Speaker 1>can't see that. That's do you know what I mean?

0:13:13.840 --> 0:13:17.080
<v Speaker 1>She's got to plug it all in. So where do

0:13:17.200 --> 0:13:19.400
<v Speaker 1>you sit right now? Because I've been speaking to you

0:13:19.480 --> 0:13:21.920
<v Speaker 1>the last few days, this isn't the first time that

0:13:21.960 --> 0:13:23.720
<v Speaker 1>I've heard this is the first time I've heard the

0:13:23.800 --> 0:13:27.720
<v Speaker 1>intensity of stem cell transplant. I don't think I realized

0:13:27.760 --> 0:13:29.719
<v Speaker 1>it was that full on, and that much of your

0:13:29.720 --> 0:13:34.200
<v Speaker 1>life is dedicated towards it. So knowing that you will

0:13:34.240 --> 0:13:36.679
<v Speaker 1>find out soon, but sometimes the waiting is the most

0:13:36.920 --> 0:13:41.000
<v Speaker 1>fucking impossible. Part of anything is waiting to hear what

0:13:41.400 --> 0:13:44.120
<v Speaker 1>you know. Not having a stable plan in place can

0:13:44.200 --> 0:13:46.920
<v Speaker 1>just do your head in. How are you feeling leading

0:13:47.000 --> 0:13:47.520
<v Speaker 1>up to this?

0:13:48.400 --> 0:13:52.280
<v Speaker 2>Like, definitely nervous. I feel nervous, and I feel like

0:13:52.360 --> 0:13:57.599
<v Speaker 2>I'm handling it. It's all really well. But then I

0:13:57.679 --> 0:13:59.520
<v Speaker 2>have been having those moments where I'm like, oh, I

0:13:59.520 --> 0:14:03.959
<v Speaker 2>feel weird in my stomach, what's that? And I've come

0:14:04.040 --> 0:14:06.920
<v Speaker 2>to realize over the last couple of months that that's anxiety.

0:14:07.280 --> 0:14:10.720
<v Speaker 2>And I've never had any anxiety before in my life,

0:14:10.800 --> 0:14:13.440
<v Speaker 2>so this feeling is very new, but I'm recognizing it. So,

0:14:14.000 --> 0:14:15.679
<v Speaker 2>you know, I've had that last couple of days, and

0:14:15.720 --> 0:14:17.440
<v Speaker 2>I'm like, why would I be having that? I'm fine

0:14:17.480 --> 0:14:19.400
<v Speaker 2>if it's fine, And then I'm like, oh, I must

0:14:19.440 --> 0:14:23.040
<v Speaker 2>be worried about obviously I am, but I must be

0:14:23.120 --> 0:14:28.040
<v Speaker 2>you know, quite you know, quite nervous about disappointment, and

0:14:28.080 --> 0:14:30.760
<v Speaker 2>that must be kind of eating up at me. Yeah,

0:14:30.840 --> 0:14:32.040
<v Speaker 2>eating away at me, of.

0:14:32.040 --> 0:14:35.000
<v Speaker 1>Course, yea yeah. And how could it not though, because

0:14:35.040 --> 0:14:38.160
<v Speaker 1>your mind always goes to worst case of scenario with

0:14:38.240 --> 0:14:40.600
<v Speaker 1>stuff too, and then you start planning your life according

0:14:40.600 --> 0:14:43.480
<v Speaker 1>to something that hasn't happened. Yet, but I guess the

0:14:43.520 --> 0:14:45.640
<v Speaker 1>reality in terms of what you have is that it

0:14:45.680 --> 0:14:46.960
<v Speaker 1>also could be your reality.

0:14:47.440 --> 0:14:51.480
<v Speaker 2>So it's yeah, I very much try and not focus

0:14:51.600 --> 0:14:55.640
<v Speaker 2>on the the worst case because you just, you know,

0:14:55.720 --> 0:14:57.720
<v Speaker 2>you just don't know, you know, I could be worrying

0:14:57.760 --> 0:15:00.760
<v Speaker 2>over nothing, So I try not to not to do

0:15:00.800 --> 0:15:03.200
<v Speaker 2>that and not to go down that path. But yeah,

0:15:03.240 --> 0:15:04.880
<v Speaker 2>maybe in my body you do so well.

0:15:05.120 --> 0:15:09.040
<v Speaker 1>But yeah, but I no, I think that anxiety around

0:15:09.040 --> 0:15:13.080
<v Speaker 1>this is, you know, is always the worst, and especially

0:15:13.080 --> 0:15:15.040
<v Speaker 1>when it is such high stakes because you've got two

0:15:15.040 --> 0:15:17.000
<v Speaker 1>girls and you've got a career and you've got so

0:15:17.080 --> 0:15:18.680
<v Speaker 1>much going on to go. Fuck, that could be a

0:15:18.800 --> 0:15:20.760
<v Speaker 1>year out of my life where I'm just kind of

0:15:21.440 --> 0:15:23.760
<v Speaker 1>on hold. So today you're going to find out. So

0:15:23.960 --> 0:15:28.600
<v Speaker 1>next podcast will check in and see kind of where

0:15:28.960 --> 0:15:31.120
<v Speaker 1>you're at. Have you is James? Does James go to

0:15:31.160 --> 0:15:33.040
<v Speaker 1>the appointments with you? Are you going solo?

0:15:33.560 --> 0:15:37.320
<v Speaker 2>No? I go solo, and not because he doesn't offer

0:15:38.040 --> 0:15:40.920
<v Speaker 2>or anything like that, But I'm like, no, I've got it.

0:15:40.960 --> 0:15:46.080
<v Speaker 2>I'm good. Like I kind of feel like almost I

0:15:46.160 --> 0:15:48.720
<v Speaker 2>just prefer to be on my own in those situations,

0:15:48.760 --> 0:15:53.880
<v Speaker 2>which might sound strange, but yeah, I just prefer to

0:15:53.920 --> 0:15:56.600
<v Speaker 2>be on my own, take it all in, and then

0:15:56.800 --> 0:15:59.040
<v Speaker 2>when I've like taken it all in, then I will

0:15:59.080 --> 0:16:01.280
<v Speaker 2>like call him on the way home and tell him,

0:16:01.400 --> 0:16:05.000
<v Speaker 2>you know what's happened. Yeah, yeah, but yeah, I don't know.

0:16:05.360 --> 0:16:06.760
<v Speaker 2>Are you like that? Do you prefer to be on

0:16:06.800 --> 0:16:08.840
<v Speaker 2>your own or you like Sam to go with you?

0:16:08.960 --> 0:16:15.000
<v Speaker 1>I think with something that fucking intense that you're, I

0:16:15.040 --> 0:16:18.000
<v Speaker 1>would definitely want Sam there with me. But I know

0:16:18.080 --> 0:16:22.320
<v Speaker 1>that you're We just operate very differently with those kind

0:16:22.320 --> 0:16:24.880
<v Speaker 1>of things, like if I was if it was a

0:16:24.920 --> 0:16:28.280
<v Speaker 1>big like the only the only thing I can kind

0:16:28.280 --> 0:16:31.000
<v Speaker 1>of relate this to is the meetings that my mom

0:16:31.280 --> 0:16:34.160
<v Speaker 1>used to have which would determine her next treatment plans.

0:16:34.240 --> 0:16:36.200
<v Speaker 1>My mum had bow cancer that went to a liver

0:16:36.280 --> 0:16:40.000
<v Speaker 1>in a lung, and so obviously chemo was hugely involved

0:16:40.120 --> 0:16:44.240
<v Speaker 1>and of course different to what you're going through, but

0:16:44.280 --> 0:16:47.160
<v Speaker 1>in terms of the not knowing, Okay, what does this

0:16:47.280 --> 0:16:51.280
<v Speaker 1>result mean and what's going to happen? To start with,

0:16:51.320 --> 0:16:53.480
<v Speaker 1>I would always go with Mum. It'd be Sam, my

0:16:53.600 --> 0:16:56.320
<v Speaker 1>Mum and David. And then I realized this is I

0:16:56.360 --> 0:16:58.800
<v Speaker 1>cannot do this, I can't be in these meetings. I

0:16:58.840 --> 0:17:00.840
<v Speaker 1>nearly passed out in the two oiler at one time,

0:17:00.880 --> 0:17:03.680
<v Speaker 1>and I'm like, I'm not useful here. I've got my

0:17:04.000 --> 0:17:06.760
<v Speaker 1>role in this area and it's not going to the meetings.

0:17:06.880 --> 0:17:09.000
<v Speaker 1>But Sam would always go and he would update me

0:17:09.080 --> 0:17:14.400
<v Speaker 1>during the meetings. Well that's amazing, but yeah, so he

0:17:14.960 --> 0:17:18.359
<v Speaker 1>very much. And if I was getting results like that

0:17:18.440 --> 0:17:21.280
<v Speaker 1>for myself, now, yeah, I would need him there because

0:17:21.359 --> 0:17:26.120
<v Speaker 1>I tend to go in my anxiety kicks right up

0:17:26.280 --> 0:17:28.880
<v Speaker 1>where your anxiety is quite under control, so you can

0:17:28.960 --> 0:17:31.000
<v Speaker 1>hear it, and I would miss stuff that was said

0:17:31.000 --> 0:17:33.280
<v Speaker 1>and I would misinterpret it. So I would need someone

0:17:33.320 --> 0:17:36.440
<v Speaker 1>there who wasn't as emotional as me to dissect that information.

0:17:36.960 --> 0:17:39.879
<v Speaker 2>Yeah, and my sister is similar, and she offered to

0:17:39.920 --> 0:17:41.840
<v Speaker 2>come with me and said like, but how do you

0:17:42.080 --> 0:17:44.720
<v Speaker 2>won't be able to take in all the information. I'm like, yes,

0:17:44.840 --> 0:17:47.440
<v Speaker 2>I will, like, I like it. That's fine, Like that's

0:17:47.520 --> 0:17:50.640
<v Speaker 2>not going to be that won't be an issue. I'll

0:17:50.640 --> 0:17:51.600
<v Speaker 2>be able to take it all in.

0:17:52.040 --> 0:17:56.800
<v Speaker 1>So yeah, yeah, so we'll say so you kind of yeah,

0:17:56.960 --> 0:18:01.320
<v Speaker 1>waiting to see why did they do this test on you?

0:18:01.400 --> 0:18:04.600
<v Speaker 1>Have you been having other symptoms that is making her

0:18:04.600 --> 0:18:07.040
<v Speaker 1>think maybe this third medication isn't working for.

0:18:07.000 --> 0:18:09.960
<v Speaker 2>You Yeah, I had a relapse like a couple of

0:18:09.960 --> 0:18:14.720
<v Speaker 2>months ago, and it was like clinically a relapse, But

0:18:14.800 --> 0:18:18.200
<v Speaker 2>they couldn't see any new lesions on my scans on

0:18:18.280 --> 0:18:22.560
<v Speaker 2>my MRIs, and often that can happen, and so they thought, look,

0:18:22.560 --> 0:18:24.879
<v Speaker 2>there's probably a lesion there that we can't see. But

0:18:24.920 --> 0:18:27.280
<v Speaker 2>it makes it really hard for them to say we're

0:18:27.280 --> 0:18:29.120
<v Speaker 2>going to stop this treatment and start a new one

0:18:29.480 --> 0:18:32.840
<v Speaker 2>because it's not so black and white. So when things

0:18:32.880 --> 0:18:35.080
<v Speaker 2>like this happened, you know, kind of I guess this

0:18:35.200 --> 0:18:38.960
<v Speaker 2>neurofilament test is almost like a backup just to help

0:18:39.160 --> 0:18:42.119
<v Speaker 2>determine where things are at and where things are headed,

0:18:42.280 --> 0:18:44.080
<v Speaker 2>because if there was a new lesion there, they would

0:18:44.080 --> 0:18:45.479
<v Speaker 2>be really black and white. They would say, Okay, we're

0:18:45.480 --> 0:18:47.800
<v Speaker 2>going to stop this third treatment you you know, we

0:18:47.840 --> 0:18:49.560
<v Speaker 2>want you to go and do the stem cell. But

0:18:49.720 --> 0:18:51.920
<v Speaker 2>it just hasn't been that black and white unfortunately.

0:18:52.280 --> 0:18:55.199
<v Speaker 1>Yeah, right, which makes them you know, in a lot

0:18:55.240 --> 0:18:56.879
<v Speaker 1>of ways that could be a good thing in there.

0:18:56.920 --> 0:18:58.520
<v Speaker 1>In other ways, it's scary.

0:18:58.240 --> 0:19:00.719
<v Speaker 2>Too, do you Yeah, how do you?

0:19:01.040 --> 0:19:03.000
<v Speaker 1>What do you feel in your gut is going to

0:19:03.040 --> 0:19:04.000
<v Speaker 1>happen this afternoon?

0:19:04.600 --> 0:19:07.960
<v Speaker 2>I kind of feel like it will all be fine,

0:19:08.160 --> 0:19:10.680
<v Speaker 2>Like yeah, I don't know. I feel like it will

0:19:10.680 --> 0:19:14.680
<v Speaker 2>be okay, like it's going to be the score will

0:19:14.680 --> 0:19:18.879
<v Speaker 2>be that of which isn't too concerning, and we'll just

0:19:18.960 --> 0:19:19.840
<v Speaker 2>keep doing what we're doing.

0:19:20.119 --> 0:19:22.439
<v Speaker 1>Well. I think that's good. I think your mindset is

0:19:22.520 --> 0:19:25.520
<v Speaker 1>because I would be like fucking planning shit already. Like

0:19:25.600 --> 0:19:27.800
<v Speaker 1>that's again as you just keeping shit real and until

0:19:27.840 --> 0:19:30.280
<v Speaker 1>you hear different, this is what the plan is. Yeah,

0:19:30.320 --> 0:19:34.760
<v Speaker 1>and let's just it's just this waiting is fucking torturous.

0:19:35.040 --> 0:19:36.160
<v Speaker 2>Yeah, it's awful.

0:19:36.280 --> 0:19:39.239
<v Speaker 1>After this. Yeah, you've got to keep busy, You've got

0:19:39.280 --> 0:19:42.720
<v Speaker 1>stuff to do and then let us know how it

0:19:42.760 --> 0:19:46.240
<v Speaker 1>goes and they we will update all you guys as

0:19:46.280 --> 0:19:50.520
<v Speaker 1>soon as we can as well. But Ticky, love you,

0:19:51.040 --> 0:19:58.760
<v Speaker 1>love you, deal with what's next when it comes. Yeah, absolutely,

0:19:59.000 --> 0:20:01.000
<v Speaker 1>all right everyone, we're going to get out of here.

0:20:01.080 --> 0:20:03.120
<v Speaker 1>Make sure you get in touch with us anytime. Show

0:20:03.160 --> 0:20:05.439
<v Speaker 1>and Tel podcast is where you can find us on Instagram.

0:20:06.200 --> 0:20:09.959
<v Speaker 1>And yeah, any questions, any thoughts, any topics you want

0:20:10.040 --> 0:20:13.320
<v Speaker 1>us to touch on, let us know there and yeah,

0:20:13.400 --> 0:20:15.600
<v Speaker 1>we'll chat to you really soon. So bye for now,

0:20:15.840 --> 0:20:16.439
<v Speaker 1>Bye guys