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