Speaker 1: It's Chronic Time, the podcast you come to if you're
Speaker 1: fucking sick.
Speaker 2: What a lovely way to start happy with your language
Speaker 2: right off the back.
Speaker 1: You know what, your mom You're always like that was
Speaker 1: too far, and then your mom's like, I really liked
Speaker 1: that bit. Brook It is Brooke and Monty and both
Speaker 1: have chronic illnesses and we are doing this chronic podcast
Speaker 1: for you. If you have a chronic illness, or if
Speaker 1: you know somebody who does have one, maybe you'll get
Speaker 1: a little something something out of it.
Speaker 2: But yeah, Brookie, do you know what I am not
Speaker 2: getting something out of at the moment? What my girls fighting? Like,
Speaker 2: I just I can't even begin I'm like, I don't
Speaker 2: think it's normal, Like all the time, all day, every day.
Speaker 2: Is that normal?
Speaker 1: Yeah? Oh, look, you don't ever want to benchmark your
Speaker 1: kids off mine, because we literally cannot have my older two.
Speaker 1: I've got three, three boys, and the older two we
Speaker 1: are so limited what we can do because of the
Speaker 1: way those two fight. Not physical, but the constant, niggling,
Speaker 1: bickering assholeness that goes on is so unpleasant to be
Speaker 1: around that we literally spend our whole time dividing and
Speaker 1: conquering our kids.
Speaker 2: Yeah, yeah, it's really like it really breaks my heart.
Speaker 2: Sometimes I'm like, oh, totally, And I'm like, I don't
Speaker 2: know where you get this from. Like, you know, James
Speaker 2: and I and not walking around the house speaking to
Speaker 2: each other rudely, Like why do they just have to
Speaker 2: be so picky at each other all the time. I
Speaker 2: just am like this week, Oh, I think if they
Speaker 2: stopped fighting of just a little bit less, even our
Speaker 2: house would be so beautiful and peaceful. So just to stop.
Speaker 1: I say that to Sam all time. I'm like, could
Speaker 1: you imagine how different would be if those two got along?
Speaker 1: And every time I see siblings playing together, or like
Speaker 1: the other day I dropped Alah on a buddy off
Speaker 1: at the movies and there was this kid I knew
Speaker 1: there with his younger brother and they're only like a
Speaker 1: year and a half apart, and I'm like, oh my god,
Speaker 1: the two of you are just doing that together and
Speaker 1: you're not arguing. You're just standing there buying a ticket
Speaker 1: and popcorn, and it's like your mates. I can't help
Speaker 1: you get jealous.
Speaker 2: Oh I would too, and my littlest one. So I
Speaker 2: have a six and a ten year old and my
Speaker 2: youngest two six. You know, she's super cute and all
Speaker 2: of her friends are so little and cute. You know
Speaker 2: that age is awesome, gorgeous. Yeah, And when her and
Speaker 2: her friends are over, my oldest like is obsessed with
Speaker 2: all of her friends, like thinks that they're so beautiful
Speaker 2: and so cute. I'm like, why why don't you think
Speaker 2: that about your own sister? You know why?
Speaker 1: I know I think that too. When Alo has a
Speaker 1: friend over and back to want to go out and
Speaker 1: jump on the tramp and stuff with him, I'm like,
Speaker 1: he's got this friend here because you're not his friend.
Speaker 1: I feel like in siblings, to the oldest one dictates
Speaker 1: what the relationship be like, although in yours it's a
Speaker 1: little different, isn't it. Tully, your six year old the boss.
Speaker 2: Yeah, it used to be. It used to be, but
Speaker 2: I yeah, it used to be that she was the boss,
Speaker 2: and that was just because she was a pretty tough
Speaker 2: kid for the first you know, four years five, Yeah,
Speaker 2: and so she just demanded a lot more attention. But
Speaker 2: now and she could be like quite harsh to eatie,
Speaker 2: but now it's like the opposite, Like Tully is trying
Speaker 2: and it's almost like easier, not too late. No, No,
Speaker 2: too much water under the bridge. Yeah.
Speaker 1: It's hard, isn't it? Because I look at the dynamic
Speaker 1: between my older children, it really reminds me of what
Speaker 1: it was like for my sister and I. So I
Speaker 1: hate the word triggers, but it triggers a lot for
Speaker 1: me When I see certain behavior. I'm like, no, no,
Speaker 1: like this is gonna affect your relationship getting old when
Speaker 1: you guys are getting older. But I already see it
Speaker 1: because Backs is so nasty to Arlo, Like it's like
Speaker 1: back Arlo cops. All of Baxter's anxiety and anger and
Speaker 1: everything comes out on Arlo can just walk into a
Speaker 1: room and he's walked in there the wrong way. It's awful.
Speaker 1: And I can just see that. As Arlo's getting older,
Speaker 1: I'm like, you're losing him because he's not going to
Speaker 1: be He's still young enough that he looks to you
Speaker 1: and it's like, oh my older brother like kind of
Speaker 1: cool where that's going to flick at some point and
Speaker 1: you've lost him.
Speaker 2: And so you don't think it's getting any better as
Speaker 2: your oldest backs gets older.
Speaker 1: No, what's happening as opposed to them fighting more, His
Speaker 1: backs has gone full teenager, and he's just more retreated
Speaker 1: by himself more Yeah, ignores him, which also upsets me
Speaker 1: because I'm like, you guys are the only time they
Speaker 1: communicate is when they're fighting. But we're not alone in
Speaker 1: this chuck. Like I always look at other kids and go, oh,
Speaker 1: you guys are They're so awesome, and then their parents
Speaker 1: like they do not stop fighting. Yeah, I just what
Speaker 1: siblings do.
Speaker 2: If anyone is if any of you guys have any tips, like,
Speaker 2: I don't know, just like I'm all at the moment
Speaker 2: trying to think of like ways to get them to
Speaker 2: work as a team, you know, So anyone has any ideas,
Speaker 2: let me know please.
Speaker 1: Yeah, I know it is. It's really tricky. It just
Speaker 1: makes it unenjoyable, which is disappointing because then you're like, god,
Speaker 1: I'm just wishing these days away because you guys are
Speaker 1: busting my ball so much. Anyway, something a bit nicer
Speaker 1: than getting our balls busted is tricky what you're up to.
Speaker 1: After we finished recording.
Speaker 2: Yes, I have connected with a beautiful woman who has
Speaker 2: been listening to our podcast. So she was listening to
Speaker 2: our podcast and sent me a message and thank you
Speaker 2: so much for the podcast. My husband's been diagnosed with
Speaker 2: MS recently, and they've both been listening and finding it
Speaker 2: really helpful. So that, you know, made me feel warm
Speaker 2: and fuzzy. And it so happens that she's in my area.
Speaker 2: So we're meeting for a coffee today. So nice, isn't it?
Speaker 1: Grade is it when somebody listens and connects and so
Speaker 1: it has been newly diagnosed.
Speaker 2: Yet newly die he's only like a few months in.
Speaker 1: Yeah right, God, that's so rough. I always feel like
Speaker 1: I'm surprised when I hear guys have been diagnosed as well.
Speaker 1: I feel like MS is so linked to women, not
Speaker 1: so much to men.
Speaker 2: Yeah, it's definitely more prevalent in women than it is men.
Speaker 2: Women from like, I think it's twenty five to forty
Speaker 2: five predominantly.
Speaker 1: Yeah right, Okay, Wow, that's so nice. Who's gonna Who's
Speaker 1: going to pay for the coffee? Though? You know, in
Speaker 1: a situation like that, it gets to the end where
Speaker 1: she'll be like, thanks so much for your time, Brook,
Speaker 1: all pay, But then you'll be so awkward you'll insist
Speaker 1: on pay, and it'll be your whole parlava at the paystation.
Speaker 2: Yeah, at the paystation. Yeah, We'll be totally will be
Speaker 2: it always is, let's be honest.
Speaker 1: That's so funny. Anyway, Well that's lovely you're doing that,
Speaker 1: but let's do a check in. I realized we're getting
Speaker 1: to these podcasts and we kind of never check in
Speaker 1: with where we're at at the moment. So how are
Speaker 1: you going?
Speaker 2: Good? Look, I'm going good, you know, like good for bad,
Speaker 2: like good in terms of being you know bad. No, Look,
Speaker 2: I'm doing okay. I'm a little bit nervous today actually
Speaker 2: because I am. I've got my neurologists this afternoon and
Speaker 2: the like she wanted me to go and get this
Speaker 2: new test done. It's called a neurofilament test. I don't
Speaker 2: know if anyone listening has had one.
Speaker 1: What is that? What does it involve?
Speaker 2: It's literally a blood test. Yeah, it's pretty amazing. So
Speaker 2: it's brand new. They've been doing it in the US
Speaker 2: and the UK for years, but it's brand new here
Speaker 2: and apparently it's amazing. Everyone's saying that it's incredible. So
Speaker 2: what it does is it can test in your brain
Speaker 2: the level of disease progression. So yeah, and they give
Speaker 2: you a score after you do this test. So I
Speaker 2: did the test like about a month or so ago,
Speaker 2: and the results came back and my GP told me
Speaker 2: what the results were, because I pested her to tell me,
Speaker 2: and she said, look, I shouldn't tell you because I
Speaker 2: don't you know, she's not a neurologist, and she's like,
Speaker 2: I don't know what the results mean or whatever. But
Speaker 2: she told me anyway, and she told me what my
Speaker 2: score was, and so then we know, both I'd research
Speaker 2: the hell out of it already and then we'll you know,
Speaker 2: looking it up to see what it all meant. And
Speaker 2: like from my research, it looks like it's quite high,
Speaker 2: like it's quite elevated. But then apparently you have to
Speaker 2: combine it with all these other factors of like on
Speaker 2: the disability scale or and things like that. So I, yeah,
Speaker 2: I don't really know what it means if it is,
Speaker 2: you know, if it is bad or it's fine, But
Speaker 2: I'll find out this afternoon. And yeah, depending what happens
Speaker 2: will depend on what my next kind of treatment is.
Speaker 2: So I don't know if I've mentioned on here before
Speaker 2: or but I've been talking to my neurologists a lot
Speaker 2: about doing the stem cell transplant treatment. They do it
Speaker 2: here in Sydney where I live. They take I think,
Speaker 2: just not too many people a year to do it,
Speaker 2: and there's an eligibility test, so you have to be
Speaker 2: eligible to do it. You have to check lots of
Speaker 2: boxes and there are a lot, so not many people
Speaker 2: get in and able to do it. A lot of
Speaker 2: people pay like hundreds and thousands of dollars and go
Speaker 2: and have this treatment done in other countries, like in Russia,
Speaker 2: in Mexico, in Singapore, like, loads and loads of people
Speaker 2: do this.
Speaker 1: I know somebody who had MS who went to Germany
Speaker 1: and did it, and yeah, had incredible, incredible results for her.
Speaker 1: But can you talk me through what the process exactly is.
Speaker 2: Yeah, it's pretty full on. It's like the last option.
Speaker 2: So even to like, there's lots of criteria that you
Speaker 2: have to meet to be able to do it. But
Speaker 2: one of them is that you have to have failed
Speaker 2: at least three treatments. And so if it looks like this,
Speaker 2: my third treatment isn't working, then I will be eligible
Speaker 2: and that's determined by your urologist. And yeah, so if
Speaker 2: that's the case, it's basically they take out, you go
Speaker 2: into hospital, they take out actually before you even going
Speaker 2: to hospital, you have to do chemo. I think you
Speaker 2: have to do like four or six rounds of chemo.
Speaker 2: So you do that over a few months, and then
Speaker 2: you go into the hospital and they take out all
Speaker 2: your cells, basically kill your entire immune system, and then
Speaker 2: freeze the cells and do what they do and then
Speaker 2: put them back into your body.
Speaker 1: And then like so the kind of healthy cells, they
Speaker 1: get rid of all of the cells that aren't serving
Speaker 1: you and put in other cells.
Speaker 2: Yeah exactly, Yeah, And then that process takes quite a while.
Speaker 2: From what I can understand, I think you're in hospital
Speaker 2: for like a good couple of months, and during that time,
Speaker 2: there's a period where you have to be in isolation
Speaker 2: because because you're rebuilding your immune system, it's really dangerous
Speaker 2: to be around anyone who catch anything, so you might
Speaker 2: be in isolation I think for a few weeks of
Speaker 2: that time. So it's pretty hectic. And then when you
Speaker 2: when you get home after this, you have to be
Speaker 2: super careful with everything, like not getting any germs. One
Speaker 2: one person that I've been kind of messaging with that
Speaker 2: has had it done has said, you know, like her
Speaker 2: kids had to when they get home from school, would
Speaker 2: have to like take their shoes off at the door,
Speaker 2: wash their feet, wash their hands and all that kind
Speaker 2: of stuff before they could come inside. They don't recommend
Speaker 2: having takeaway or any food that hasn't been cooked inside
Speaker 2: your house. Yeah, you know, for fear of germs and things.
Speaker 2: So it's pretty intense, i'd say, from what I reach, Yeah,
Speaker 2: from what I can understand, it's basically like a year
Speaker 2: of your life that you would be like not you know,
Speaker 2: not functioning and kind of just out of the game. Yeah,
Speaker 2: but look by the same token you would take that
Speaker 2: if it meant that it was going to stop the progression,
Speaker 2: so totally it all lost.
Speaker 1: Yeah, and it is weighing it all up, and it's
Speaker 1: so confronting when you know it's and it's only hours
Speaker 1: until we know kind of I guess if that's what
Speaker 1: you're looking at, or if this is working the treatment
Speaker 1: that which is your third treatment is working for you
Speaker 1: or not. And I think just taking it back a step,
Speaker 1: you googling in the meantime between speaking to your doctor
Speaker 1: is so fucking intense, Like, I know, you need to
Speaker 1: know everything, yeah, but your GP can't read though. It
Speaker 1: goes against so like there's so many different factors to
Speaker 1: be considered in this and you've only got one of
Speaker 1: them at the moment, and you're blame googling.
Speaker 2: Of course, I am like anyone would you can't help it?
Speaker 2: Like you can't help it. And mine Neu Religius, was
Speaker 2: overseas and she was emailing to lock in this appointment
Speaker 2: when the results came back, and and I said, can
Speaker 2: you just tell me quickly, like this is the score?
Speaker 2: So is that good or bad? Like, just tell me that?
Speaker 2: And she's like, I can't just tell you that. I
Speaker 2: have to put it on the curve and see where
Speaker 2: you fit on the curve and what it looks like.
Speaker 2: It's not that simple.
Speaker 1: So yes, So from reading from the naked eye, she
Speaker 1: can't see that. That's do you know what I mean?
Speaker 1: She's got to plug it all in. So where do
Speaker 1: you sit right now? Because I've been speaking to you
Speaker 1: the last few days, this isn't the first time that
Speaker 1: I've heard this is the first time I've heard the
Speaker 1: intensity of stem cell transplant. I don't think I realized
Speaker 1: it was that full on, and that much of your
Speaker 1: life is dedicated towards it. So knowing that you will
Speaker 1: find out soon, but sometimes the waiting is the most
Speaker 1: fucking impossible. Part of anything is waiting to hear what
Speaker 1: you know. Not having a stable plan in place can
Speaker 1: just do your head in. How are you feeling leading
Speaker 1: up to this?
Speaker 2: Like, definitely nervous. I feel nervous, and I feel like
Speaker 2: I'm handling it. It's all really well. But then I
Speaker 2: have been having those moments where I'm like, oh, I
Speaker 2: feel weird in my stomach, what's that? And I've come
Speaker 2: to realize over the last couple of months that that's anxiety.
Speaker 2: And I've never had any anxiety before in my life,
Speaker 2: so this feeling is very new, but I'm recognizing it. So,
Speaker 2: you know, I've had that last couple of days, and
Speaker 2: I'm like, why would I be having that? I'm fine
Speaker 2: if it's fine, And then I'm like, oh, I must
Speaker 2: be worried about obviously I am, but I must be
Speaker 2: you know, quite you know, quite nervous about disappointment, and
Speaker 2: that must be kind of eating up at me. Yeah,
Speaker 2: eating away at me, of.
Speaker 1: Course, yea yeah. And how could it not though, because
Speaker 1: your mind always goes to worst case of scenario with
Speaker 1: stuff too, and then you start planning your life according
Speaker 1: to something that hasn't happened. Yet, but I guess the
Speaker 1: reality in terms of what you have is that it
Speaker 1: also could be your reality.
Speaker 2: So it's yeah, I very much try and not focus
Speaker 2: on the the worst case because you just, you know,
Speaker 2: you just don't know, you know, I could be worrying
Speaker 2: over nothing, So I try not to not to do
Speaker 2: that and not to go down that path. But yeah,
Speaker 2: maybe in my body you do so well.
Speaker 1: But yeah, but I no, I think that anxiety around
Speaker 1: this is, you know, is always the worst, and especially
Speaker 1: when it is such high stakes because you've got two
Speaker 1: girls and you've got a career and you've got so
Speaker 1: much going on to go. Fuck, that could be a
Speaker 1: year out of my life where I'm just kind of
Speaker 1: on hold. So today you're going to find out. So
Speaker 1: next podcast will check in and see kind of where
Speaker 1: you're at. Have you is James? Does James go to
Speaker 1: the appointments with you? Are you going solo?
Speaker 2: No? I go solo, and not because he doesn't offer
Speaker 2: or anything like that, But I'm like, no, I've got it.
Speaker 2: I'm good. Like I kind of feel like almost I
Speaker 2: just prefer to be on my own in those situations,
Speaker 2: which might sound strange, but yeah, I just prefer to
Speaker 2: be on my own, take it all in, and then
Speaker 2: when I've like taken it all in, then I will
Speaker 2: like call him on the way home and tell him,
Speaker 2: you know what's happened. Yeah, yeah, but yeah, I don't know.
Speaker 2: Are you like that? Do you prefer to be on
Speaker 2: your own or you like Sam to go with you?
Speaker 1: I think with something that fucking intense that you're, I
Speaker 1: would definitely want Sam there with me. But I know
Speaker 1: that you're We just operate very differently with those kind
Speaker 1: of things, like if I was if it was a
Speaker 1: big like the only the only thing I can kind
Speaker 1: of relate this to is the meetings that my mom
Speaker 1: used to have which would determine her next treatment plans.
Speaker 1: My mum had bow cancer that went to a liver
Speaker 1: in a lung, and so obviously chemo was hugely involved
Speaker 1: and of course different to what you're going through, but
Speaker 1: in terms of the not knowing, Okay, what does this
Speaker 1: result mean and what's going to happen? To start with,
Speaker 1: I would always go with Mum. It'd be Sam, my
Speaker 1: Mum and David. And then I realized this is I
Speaker 1: cannot do this, I can't be in these meetings. I
Speaker 1: nearly passed out in the two oiler at one time,
Speaker 1: and I'm like, I'm not useful here. I've got my
Speaker 1: role in this area and it's not going to the meetings.
Speaker 1: But Sam would always go and he would update me
Speaker 1: during the meetings. Well that's amazing, but yeah, so he
Speaker 1: very much. And if I was getting results like that
Speaker 1: for myself, now, yeah, I would need him there because
Speaker 1: I tend to go in my anxiety kicks right up
Speaker 1: where your anxiety is quite under control, so you can
Speaker 1: hear it, and I would miss stuff that was said
Speaker 1: and I would misinterpret it. So I would need someone
Speaker 1: there who wasn't as emotional as me to dissect that information.
Speaker 2: Yeah, and my sister is similar, and she offered to
Speaker 2: come with me and said like, but how do you
Speaker 2: won't be able to take in all the information. I'm like, yes,
Speaker 2: I will, like, I like it. That's fine, Like that's
Speaker 2: not going to be that won't be an issue. I'll
Speaker 2: be able to take it all in.
Speaker 1: So yeah, yeah, so we'll say so you kind of yeah,
Speaker 1: waiting to see why did they do this test on you?
Speaker 1: Have you been having other symptoms that is making her
Speaker 1: think maybe this third medication isn't working for.
Speaker 2: You Yeah, I had a relapse like a couple of
Speaker 2: months ago, and it was like clinically a relapse, But
Speaker 2: they couldn't see any new lesions on my scans on
Speaker 2: my MRIs, and often that can happen, and so they thought, look,
Speaker 2: there's probably a lesion there that we can't see. But
Speaker 2: it makes it really hard for them to say we're
Speaker 2: going to stop this treatment and start a new one
Speaker 2: because it's not so black and white. So when things
Speaker 2: like this happened, you know, kind of I guess this
Speaker 2: neurofilament test is almost like a backup just to help
Speaker 2: determine where things are at and where things are headed,
Speaker 2: because if there was a new lesion there, they would
Speaker 2: be really black and white. They would say, Okay, we're
Speaker 2: going to stop this third treatment you you know, we
Speaker 2: want you to go and do the stem cell. But
Speaker 2: it just hasn't been that black and white unfortunately.
Speaker 1: Yeah, right, which makes them you know, in a lot
Speaker 1: of ways that could be a good thing in there.
Speaker 1: In other ways, it's scary.
Speaker 2: Too, do you Yeah, how do you?
Speaker 1: What do you feel in your gut is going to
Speaker 1: happen this afternoon?
Speaker 2: I kind of feel like it will all be fine,
Speaker 2: Like yeah, I don't know. I feel like it will
Speaker 2: be okay, like it's going to be the score will
Speaker 2: be that of which isn't too concerning, and we'll just
Speaker 2: keep doing what we're doing.
Speaker 1: Well. I think that's good. I think your mindset is
Speaker 1: because I would be like fucking planning shit already. Like
Speaker 1: that's again as you just keeping shit real and until
Speaker 1: you hear different, this is what the plan is. Yeah,
Speaker 1: and let's just it's just this waiting is fucking torturous.
Speaker 2: Yeah, it's awful.
Speaker 1: After this. Yeah, you've got to keep busy, You've got
Speaker 1: stuff to do and then let us know how it
Speaker 1: goes and they we will update all you guys as
Speaker 1: soon as we can as well. But Ticky, love you,
Speaker 1: love you, deal with what's next when it comes. Yeah, absolutely,
Speaker 1: all right everyone, we're going to get out of here.
Speaker 1: Make sure you get in touch with us anytime. Show
Speaker 1: and Tel podcast is where you can find us on Instagram.
Speaker 1: And yeah, any questions, any thoughts, any topics you want
Speaker 1: us to touch on, let us know there and yeah,
Speaker 1: we'll chat to you really soon. So bye for now,
Speaker 1: Bye guys