May 25, 2025 • 20 mins
We sat down and recorded before Brooke headed off to see her neurologist. Brooke has had three different types of treatments for MS and none have worked as they would have hoped. Stem cell transplants are occasionally done in Australia but have a super strict criteria you need to meet to be considered. We chat about what it is exactly and if Brooke is a candidate.
This story is unfolding in real time and we will keep you updated.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:10):
It's Chronic Time, the podcast you come to if you're
fucking sick.
Speaker 2 (00:18):
What a lovely way to start happy with your language
right off the back.
Speaker 1 (00:24):
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.
Speaker 2 (00:46):
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.
(01:08):
Is that normal?
Speaker 1 (01:09):
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,
(01:29):
bickering assholeness that goes on is so unpleasant to be
around that we literally spend our whole time dividing and
conquering our kids.
Speaker 2 (01:38):
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
(02:00):
stopped fighting of just a little bit less, even our
house would be so beautiful and peaceful. So just to stop.
Speaker 1 (02:08):
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
(02:28):
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.
Speaker 2 (02:35):
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
(02:57):
that about your own sister? You know why?
Speaker 1 (02:59):
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.
Speaker 2 (03:20):
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,
(03:40):
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.
Speaker 1 (03:49):
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
(04:12):
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
(04:32):
cool where that's going to flick at some point and
you've lost him.
Speaker 2 (04:36):
And so you don't think it's getting any better as
your oldest backs gets older.
Speaker 1 (04:42):
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
(05:03):
like they do not stop fighting. Yeah, I just what
siblings do.
Speaker 2 (05:09):
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.
Speaker 1 (05:23):
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.
Speaker 2 (05:39):
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
(06:00):
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?
Speaker 1 (06:07):
Grade is it when somebody listens and connects and so
it has been newly diagnosed.
Speaker 2 (06:12):
Yet newly die he's only like a few months in.
Speaker 1 (06:15):
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.
Speaker 2 (06:26):
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.
Speaker 1 (06:34):
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.
Speaker 2 (06:50):
Yeah, at the paystation. Yeah, We'll be totally will be
it always is, let's be honest.
Speaker 1 (06:56):
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?
Speaker 2 (07:08):
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
(07:29):
new test done. It's called a neurofilament test. I don't
know if anyone listening has had one.
Speaker 1 (07:35):
What is that? What does it involve?
Speaker 2 (07:37):
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
(07:58):
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
(08:20):
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,
(08:44):
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
(09:07):
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,
(09:30):
in Mexico, in Singapore, like, loads and loads of people
do this.
Speaker 1 (09:34):
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.
Speaker 2 (09:46):
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
(10:08):
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
(10:28):
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.
Speaker 1 (10:39):
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.
Speaker 2 (10:46):
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
(11:07):
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,
(11:29):
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
(11:49):
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.
Speaker 1 (12:08):
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
(12:29):
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.
Speaker 2 (12:42):
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
(13:03):
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.
Speaker 1 (13:08):
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
(13:29):
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?
Speaker 2 (13:48):
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,
(14:10):
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,
(14:30):
eating away at me, of.
Speaker 1 (14:32):
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.
Speaker 2 (14:47):
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.
Speaker 1 (15:05):
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
(15:28):
you're at. Have you is James? Does James go to
the appointments with you? Are you going solo?
Speaker 2 (15:33):
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
(15:53):
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?
Speaker 1 (16:08):
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
(16:31):
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,
(16:51):
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
(17:14):
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.
Speaker 2 (17:36):
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.
Speaker 1 (17:52):
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.
Speaker 2 (18:07):
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
(18:27):
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
(18:47):
want you to go and do the stem cell. But
it just hasn't been that black and white unfortunately.
Speaker 1 (18:52):
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.
Speaker 2 (18:58):
Too, do you Yeah, how do you?
Speaker 1 (19:01):
What do you feel in your gut is going to
happen this afternoon?
Speaker 2 (19:04):
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.
Speaker 1 (19:20):
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.
Speaker 2 (19:35):
Yeah, it's awful.
Speaker 1 (19:36):
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,
(19:59):
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
It's Chronic Time, the podcast you come to if you're
fucking sick.
Speaker 2 (00:18):
What a lovely way to start happy with your language
right off the back.
Speaker 1 (00:24):
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.
Speaker 2 (00:46):
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.
(01:08):
Is that normal?
Speaker 1 (01:09):
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,
(01:29):
bickering assholeness that goes on is so unpleasant to be
around that we literally spend our whole time dividing and
conquering our kids.
Speaker 2 (01:38):
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
(02:00):
stopped fighting of just a little bit less, even our
house would be so beautiful and peaceful. So just to stop.
Speaker 1 (02:08):
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
(02:28):
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.
Speaker 2 (02:35):
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
(02:57):
that about your own sister? You know why?
Speaker 1 (02:59):
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.
Speaker 2 (03:20):
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,
(03:40):
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.
Speaker 1 (03:49):
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
(04:12):
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
(04:32):
cool where that's going to flick at some point and
you've lost him.
Speaker 2 (04:36):
And so you don't think it's getting any better as
your oldest backs gets older.
Speaker 1 (04:42):
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
(05:03):
like they do not stop fighting. Yeah, I just what
siblings do.
Speaker 2 (05:09):
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.
Speaker 1 (05:23):
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.
Speaker 2 (05:39):
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
(06:00):
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?
Speaker 1 (06:07):
Grade is it when somebody listens and connects and so
it has been newly diagnosed.
Speaker 2 (06:12):
Yet newly die he's only like a few months in.
Speaker 1 (06:15):
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.
Speaker 2 (06:26):
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.
Speaker 1 (06:34):
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.
Speaker 2 (06:50):
Yeah, at the paystation. Yeah, We'll be totally will be
it always is, let's be honest.
Speaker 1 (06:56):
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?
Speaker 2 (07:08):
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
(07:29):
new test done. It's called a neurofilament test. I don't
know if anyone listening has had one.
Speaker 1 (07:35):
What is that? What does it involve?
Speaker 2 (07:37):
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
(07:58):
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
(08:20):
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,
(08:44):
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
(09:07):
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,
(09:30):
in Mexico, in Singapore, like, loads and loads of people
do this.
Speaker 1 (09:34):
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.
Speaker 2 (09:46):
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
(10:08):
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
(10:28):
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.
Speaker 1 (10:39):
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.
Speaker 2 (10:46):
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
(11:07):
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,
(11:29):
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
(11:49):
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.
Speaker 1 (12:08):
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
(12:29):
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.
Speaker 2 (12:42):
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
(13:03):
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.
Speaker 1 (13:08):
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
(13:29):
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?
Speaker 2 (13:48):
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,
(14:10):
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,
(14:30):
eating away at me, of.
Speaker 1 (14:32):
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.
Speaker 2 (14:47):
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.
Speaker 1 (15:05):
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
(15:28):
you're at. Have you is James? Does James go to
the appointments with you? Are you going solo?
Speaker 2 (15:33):
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
(15:53):
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?
Speaker 1 (16:08):
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
(16:31):
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,
(16:51):
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
(17:14):
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.
Speaker 2 (17:36):
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.
Speaker 1 (17:52):
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.
Speaker 2 (18:07):
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
(18:27):
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
(18:47):
want you to go and do the stem cell. But
it just hasn't been that black and white unfortunately.
Speaker 1 (18:52):
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.
Speaker 2 (18:58):
Too, do you Yeah, how do you?
Speaker 1 (19:01):
What do you feel in your gut is going to
happen this afternoon?
Speaker 2 (19:04):
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.
Speaker 1 (19:20):
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.
Speaker 2 (19:35):
Yeah, it's awful.
Speaker 1 (19:36):
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,
(19:59):
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
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