00:00:00
I was running and then realizing, [ __ ] I can't run away from this. >> Who is Helen Baron?
00:00:04
>> I am a trail runner. I'm a mom. I'm a physio. I'm just a friendly human.
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>> 2023, that's how it was for you. Life hanging in the balance. Just an absolute
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cluster [ __ ] >> Everyone's juggling lots of balls and it's okay to drop some. Just don't drop
00:00:17
the glass ones. He did say to me, "This will be the hardest two weeks of your
00:00:20
life." My youngest is like the an immediate emotional response. I don't
00:00:24
want you to die. And a big hug. Give my husband a cuddle and say I love you. No wonder whether you're going to actually
00:00:28
be able to say those words again. >> I will get through this thing and I may
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not sound like me, but I will be me. Did you write any like in case I don't make
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it? >> I've got a few recordings. >> It's a love note of goodbye.
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>> There's an awful lot of strength that we have in ourselves that we don't
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necessarily realize until you have to use it. >> Are you proud of yourself?
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>> Yeah, I think so. >> Hela Baron, welcome to my podcast. >> Thank you, Dom. Thanks for having me.
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>> Really good to have you here. First of all, who is Hela Baron? Ah, who am I? I
00:00:58
um wow. I am a trail runner. I'm um I'm a mom. I'm a physio. I'm a wife. I'm
00:01:08
just a friendly human. Yeah. Just uh a bit of everything. Lots of hats all in one.
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>> It's a difficult question to answer, isn't it? Cuz it's like where do you
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where do you begin? What do you prioritize? Yeah. So So you're married. You've got how many kids?
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>> Two boys. >> How old are your boys? >> 16 and 17. >> Okay. And you do a lot of running like
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like mileers which is um 160 km 100 miles. >> Yes. Yeah. Well, I I did pre uh
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precancer. Um but uh yeah, I I was definitely into the trail ultras like like the 80 to 100 ones. Good
00:01:45
challenge without absolutely cooking yourself on a mileer. >> Yeah. 160ks. That's where like sleep
00:01:51
deprivation comes into it. You're running day, you're running night. >> Yeah. Yeah.
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>> Yeah, that's definitely part of that. >> Um, yeah. So, the Yeah. What sort of running
00:02:00
have you done? 2023. By the way, we're going to go through this in sort of chronological order, but 2023 is what
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it's quite funny, isn't it? I was thinking about this when I was prepping
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this interview because >> at the start of the start of every year, everyone has sort of expectations for
00:02:11
the year and all those expectations at the beginning of a new year for anyone for the year to be better than
00:02:18
what the previous one was. Yeah, no one's ever like, "Well, life's going to
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throw me a curveball and this year this year, >> this year's going to be a complete
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writeoff." But essentially for 2023, that's how it was for you. Life life
00:02:29
hanging in the balance. >> Um, just an absolute cluster [ __ ] I think it's probably fair to say.
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>> Probably an excellent summary. Yeah, like I had started. >> So, in October 22, I started a new role
00:02:41
back with High Performance Sport. Like, my boys were a little bit older and I was like, "Okay, I'm kind of ready to
00:02:45
travel and do things again." And so I work full-time as one of the physios with snow sports. So that had started.
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We were quite settled in Wanuker and um and the boys were good and I was really good and things were great and I trained
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for my first mileer and >> um yeah took that off and was feeling really good. Had a couple of things
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lined up racing wise overseas. Was heading to Aussie and yeah then it all went pretty sideways.
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>> Yeah. Yes. So the event you're talking about, that's the Tatawa Milo 100 miles
00:03:15
and you finished fifth. Yes. >> Um so you're no slouch. >> It was a good year.
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>> Finishing is one thing. Getting a top five finish. Amazing. Um >> yeah, we're going right back. First of
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all, so um from Hamilton. >> Yes. >> And a head girl at Hillrest High School.
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>> Yes, I was. >> Which I think it sort of um from an early age it sort of paints a picture of
00:03:37
the sort of person you are, you know. >> Yeah. >> Obviously driven, focused.
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>> Yeah. just that that high performance sort of mentality mindset. >> Yeah. Yeah. Yeah. And I think that was
00:03:46
probably um part of my upbr up upbringing and just the you know we got involved in everything sport and music
00:03:53
and school and just get in and get amongst everything like I played hockey right through school and um as well and
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yeah and a little bit of running in there just more for enjoyment but um yeah it was uh it started back in
00:04:07
Hamilton Hilus High >> and um what came first the running or the physio? Uh
00:04:15
well running kind of went alongside things. Physio um physio became my focus. Um hockey was probably the biggie
00:04:23
in there. Uh so when I finished um school and headed to uni in Deneden and I was playing um sort of rep level there
00:04:31
with a targetago and then moved to Canterbury and yeah hockey was big uh and running came sort of as part of
00:04:37
that. our our Canary team. We'd go in the offseason, get everyone together and
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go run through Goats Pass and like that was probably my first introduction. Goats Pass and Lunch Peak and we'd do
00:04:47
that to um >> yeah to I guess get around together and prep for the next season. Make sure
00:04:52
everyone is doing some training through the summer. >> Ghost Pass, that's the big running leg
00:04:57
on the coast to coast. It's epic. >> Not really not even a run, is it? You're
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scrambling and river crossings and >> it's an activity that for a lot of it
00:05:05
requires like your hands and your feet. >> Yeah. Yeah, for sure. A bit of scrambling and then that last sort of 5
00:05:09
10k out along the river beds. Pretty grunty. >> Yeah. Which goes on forever.
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>> When or where did the love of type two fun come from? >> I think it's always been there to be
00:05:20
fair. Is it? >> Yeah. Well, it's like when you're doing your your fitness stuff for like for the
00:05:25
even the more explosive sports and you're doing the high intensity reps which you just have to and you feel
00:05:30
revoling at the time, but later it feels really good. So, uh, so I think it's always been
00:05:36
there in some form. It's just maybe as I got older, things got slower, more, you
00:05:41
know, like get into H. I'm just going to go for longer. It doesn't have to be
00:05:44
that intensity. I'll just put myself in the hole in a different way. >> I I do you think you're sort of born
00:05:50
that way or do you think someone can teach themselves? >> I mean, I think you can probably same as
00:05:55
anything isn't behavior, you can maybe adjust them, but there's got to be a
00:05:59
little something that pushes you in that direction in the >> in the first place. Yeah. And um what's
00:06:05
your job with um high performance in New Zealand? Is that a physio thing? Like you're you're in Oakuckland at the
00:06:10
moment and you're able to join me on the podcast because you're here in your
00:06:12
capacity as physio for parolympics. You said >> yes. Yeah. So I am employed by high
00:06:18
performance sport New Zealand. I'm full-time as a as a performance physiootherapist. So um there's two of
00:06:24
us full-time and then we have some other crew help part-time because we do so much travel. Um, so I am uh treating in
00:06:31
the clinic, but that's probably not the biggest part of what we do. We're on
00:06:35
snow with the team. We're in the gym. We're sort of working on tweaking strength and movement and, you know,
00:06:40
muscle balance for performance as much as the um injury side of things. We're
00:06:44
trying to mitigate injury and then, you know, obviously helping put people back together when things do go a bit
00:06:50
p-shaped, but it's a a real holistic role in that sense. Um, so I work across
00:06:56
the park and pipe. So that's um big air slope sle halfpipe uh and our parolympic
00:07:02
team. So sit ski and standing um adaptive skiing athletes. Yeah. So >> and and you've done the the Olympics
00:07:09
before. >> Yes. So that was um previously I was with high performance sport with cycling
00:07:15
New Zealand and I worked for them across the Rio Olympic cycle uh and then I was
00:07:20
in the core health team at the Rio Olympics and the Tokyo 2020 or 2021 Olympics and then uh the Birmingham
00:07:27
Commonwealth Games um yeah more um with them in the so we'd be in the central
00:07:33
hub in the village they call it the core health team. So we would often look after the athletes who um the biggest
00:07:38
sports would take their own physios and uh we'd be looking after some of the
00:07:42
smaller sports and travel for to their events and look after them with >> like a duty physio.
00:07:48
>> Yeah. Yeah. Yeah. Exactly. Um and I mean it's great cuz when you're working fully
00:07:52
immersed in a sport as I was with cycling and I am now with snow sports those multi-event ones are like they're
00:07:58
really cool. I was the grappling physio at the comealth games which was awesome.
00:08:01
judo and wrestling and that was and boxing. It was Yeah, it was good fun. >> So, so you've um you've you've rubbed
00:08:07
shoulders and you worked with a lot of um like really, you know, top of the game, high performance people. What are
00:08:12
there some lessons that you've got from then that you've been able to use for
00:08:15
your own sort of running even though it's at a way smaller scale? >> Yeah. Yeah. I mean, all of those um
00:08:21
those things I think everyone we sort of learn off each other, don't we? like
00:08:24
it's the uh um you've got to prioritize things and what's important at a
00:08:29
particular time and um figuring out you know total life load is pretty important
00:08:35
and that's um that can be really hard like for the athletes when there's um
00:08:38
there's so many commitments um and you know our crew now they do so much travel
00:08:43
and a lot of things with around sponsorship and there's just a lot of um there's a lot of noise and so I think
00:08:50
probably one of the things um that they teach me and that I help them is like how we filter out the noise and what put
00:08:58
the important stuff important. Um we talked yeah we talked a bit about you know everyone's juggling lots of balls
00:09:04
um and it's okay to drop some just don't drop the glass ones you know and things
00:09:07
like your health you know those are those are really important and sometimes you can put things down for a little bit
00:09:12
of time you'll be able to pick them back up but actually um yeah just don't drop
00:09:16
the glass ones family health. >> Oh I love that I love that analogy. I've
00:09:19
never heard that one before. Yeah. Yeah. relationships, anything that's super
00:09:23
important to you. >> Yeah, those things. Yeah. Don't don't Yeah. Don't mess with those ones. They
00:09:26
they have to stay at the center cuz actually for you know that's what makes us us as humans and then the sport sort
00:09:33
of fits around around that really. >> Yeah. >> Yeah. >> Well, you talk about how busy these
00:09:37
people are but um then there's there's you. So you're training for this um 100
00:09:42
100 mile race at the beginning of 2023. Meanwhile, you're you know you're
00:09:45
married and you've got a couple of I suppose like young teenage boys at that
00:09:49
stage. >> Yeah. Yes. Yeah. Life life is busy. Life is uh is >> pretty busy all the time. Um
00:09:56
>> how do you how do you how do you get that? Is it just getting up earlier in
00:09:58
the morning or doing in the evening? >> Yeah. Well, both. Yeah. Like if um for
00:10:03
me, I really wanted to make sure that I was prioritizing time with my family. And I love my running and I love my
00:10:11
work, but the glass ball for me is um my family. And so, um, I would, yeah, I'd
00:10:17
get up early and I mean, it's easier in place like Monica because in the summer,
00:10:20
the sun comes up at like 4:00 and it doesn't go down till 11 at night. So, you can do things at opposite ends of
00:10:25
the day, go for a big run and still be home in time for breakfast with the fam. >> Yeah. So, it was sort of fitting it
00:10:31
around there. And I did find that the fitter I was probably the less sleep that I felt that I needed. And it was
00:10:38
good. I had the energy to kind of get through the day and just prioritize. Um, yeah, that family stuff as well.
00:10:44
It's funny how that works. E like the more you exercise, you're a lot more
00:10:47
tired, you actually have more energy. >> Yeah, exactly. >> But I'm super inspired by I think um
00:10:51
mostly amateur athletes. Like you go to like an iron man event or something in Topo and you see people that have got
00:10:57
like not you know full-time jobs and families and somehow they've managed to
00:11:00
train for this. >> Yeah, it's incredible. I mean and that like the multisport events when you're
00:11:07
it's the number of disciplines. I mean, for me, I love trail running and living
00:11:12
in Monaco, there's people like, "Oh, you're going to get it. You're going to
00:11:15
get into multisport." And I thought, "Oh, no." Like, "Running's hard.
00:11:18
Running's hard enough to fit in." I like had a bike and a you know, kayak or
00:11:22
something. It's impressive. But yeah, fitting all of that stuff in is really
00:11:26
hard. And there'll be times if you are really specifically training for something even as a as an amateur, let
00:11:32
alone the elite crew is um is you're going to have really tired weeks just like and kind of knowing how
00:11:40
>> or understanding how you're going to respond so that you're not putting that
00:11:43
on anyone else. That's that's a biggie for me. >> So the 2023 Tatawa, which we talked
00:11:49
about at the beginning of the podcast, 100 mile race, which is 160 km. Um and you finished fifth.
00:11:54
>> Yes. What what did that race mean to you personally? >> Um that was such an incredible day. Um
00:12:02
I'd I'd finally I mean I'd done training for for events before, but mostly again
00:12:08
relating to that sort of life balance. It would be like I train, I run how I like, I run how I like and oh I've
00:12:13
signed up to this event, so maybe four weeks out I should tailor my tail my program a little bit. Um and the year
00:12:19
before um I yeah I made the commitment to sign up to this and I was like okay well you're doing it you probably should
00:12:27
actually uh put a bit more structure 100 miles not your 50k is you do need a little bit of a plan and so I figured
00:12:34
out again so right through that somehow I was going to make that work around work and family and so being able to put
00:12:41
that in place and then get out there on the day and that day just flowed. was so
00:12:46
cool and my family were there as my support crew and I felt good. I mean, even in those really brutal moments
00:12:52
where it's a bit of a hot day or I've been running for god knows how many
00:12:56
hours. Um, and in deep in the pain cave, it just was still I think maybe 90% of that day I just grinned like it was just
00:13:04
a fun fun day. So so satisfying to have put a plan in place and and to have come
00:13:11
off and I was so surprised to be fair like the the fifth place was just well how did where did that come from? And I
00:13:18
you know the the course had changed that year. It was the year of the big floods
00:13:21
um up north and the um the beginning uh there was some slips so they had to change that and it ended up being a
00:13:28
couple of loops. So, I saw my support crew quite a bit that day, which was wicked. But also, all of the hilly bits
00:13:34
were at the start, which is what I love. I'm from Monica, and that's the bit I
00:13:37
love. So, I just was like, "Oh, well, I'll go help leather on those bits and
00:13:42
see how I feel and then just make my way through the rest of the day." And so,
00:13:45
that was cool. It was just a cool cool day. Just Yeah. Happy days. >> It's such um an unfathom fathomably long
00:13:52
run. It's like you did in like 20 hours or something. So, you say it a great
00:13:56
day, but it was a great day and night. It was >> Yeah. Yes. Yes, there was a full day.
00:14:01
You know, you look at the straa in your steps for the day and it's like, yeah, 100,000 for it was ridiculous. But
00:14:10
anyway, what what drives someone, male or female, to to do do a 100 mile event? >> Really nice.
00:14:19
>> We're absolutely mental. Um, no, I think it's that um there's a little bit of
00:14:24
just wanting to see how far you can push yourself. And I really love just being out on the trails like the just the
00:14:31
freedom of um being out and moving in nature and so I just like to do it for a very long time as it turns out. But
00:14:39
yeah, just like oh I've done that and I yeah I reckon I could see how that goes.
00:14:43
I reckon I remember my first ultra was a 50k and a friend of mine had convinced me to sign up for that. Thanks Kathy. Uh
00:14:50
and then she had done the old ghost which was 85 and I just remember thinking oh my god. Uh and then after I
00:14:56
done the 50, oh yeah, I could do that. And then that led to 100k and then oh maybe and who knows if I if I the wheels
00:15:04
hadn't fallen off on my health where the 160k would have left uh led to. But um
00:15:08
yeah, don't know. It's like it's just tempting to see how far you can push.
00:15:13
But the um though I mean those big ones take a bit out of you after. That's the
00:15:17
recovery after as well physically. Yeah. Physically. Yeah. And you're just tired
00:15:21
because you you've pushed your system to the limit. So choosing when to fit those
00:15:26
in and how many of those you might be able to do if you're also trying to logistically work with family and work
00:15:32
is yeah that's sensible to plan ahead. >> So so you finished that event um in
00:15:39
fifth place. [ __ ] you must have been buzzing after that. How did you how did you sort of see in the the days or weeks
00:15:44
after that? How did you see the rest of 2023 playing out? >> Yeah. Well it was um then it was like
00:15:48
okay I've that was my big that was my big running goal for Yep. got myself through a mileer running wise. I wanted
00:15:56
to do um ultra trail Australia in the May and I signed up to do that. Had some um things in place for that. So that was
00:16:03
my running goal. But as said I'd just started with um snow sports and I so finished the race on the well I want to
00:16:11
say Saturday but Sunday morning I should know. Um I was due to fly home that afternoon um repack my bags and then
00:16:20
head for Georgia, Bakyani, Georgia with our snow sports team for the world champs. So that was the plan.
00:16:26
>> There was a few delays thanks to the the weather up there. So I had like a day at
00:16:30
home and then head off and it was just kick into the next part of my work stuff really. I um I wanted to get my
00:16:38
specialization um registration for phys with the physiootherapy board. So that was in there and just really get stuck
00:16:45
into my work. So there was exciting things coming actually in 2023 was the plan.
00:16:50
>> So um yeah, it's only a couple of weeks after that event and you're overseas
00:16:54
with um the New Zealand ski team. And is that when you discover like a lump on your tongue?
00:17:00
>> Yeah. Yeah. So, I was um I've had I'd had before just a little um I've got
00:17:05
sharp had a sharp tooth back of my mouth. Every so often I'd get a like my tongue would drop on it, get a we bit
00:17:10
raw and let it heal for a couple of days and it would be fine. And they'd um
00:17:14
because it created a little bit of scarring um they'd biopsied that before and everything's fine, don't worry, but
00:17:20
tongues are tongues are a weird they should heal and so if if that ever happens again um let me know uh and get
00:17:28
it checked out quickly. And so I had this sore tongue and I looked like it's
00:17:33
a bit red but we'll see. Changed my food for a few days. Um >> so you weren't in any pain or anything.
00:17:37
>> It was just stingy. It was um just like you know like if you've got a little
00:17:40
ultra you burnt your tongue that's what it felt like and it was looked like the
00:17:43
tiny little like tip of your fingernail kind of size this this red patch. So I would check that out in another couple
00:17:49
of days and I did and it was still sore like hadn't changed at all. Oh that's
00:17:55
odd. Um yeah and then it sort of progressed from there like uh we moved on I moved on from there to um Italy
00:18:03
with the parah team. So I was there with the park and pipe team at um at the world champs. Moved on to par and like
00:18:08
oh it's still sore and I think that's bigger um and that is not good. I know
00:18:14
enough about the human body um that things getting bigger in the mouth is that's yeah it's not a good time. It's
00:18:21
not. So I yeah made some appointments for when I got home but I stayed for those last few weeks of the tour and saw
00:18:29
my GP as soon as I got home and yeah the wheels were in motion then for >> yeah the next steps in terms of
00:18:36
diagnosis and treatment. Yeah. >> So you you were feeling okay though. You
00:18:40
>> I felt Yeah. I mean apart from having a sore tongue and being a bit tired from
00:18:44
from the miler and having terrible toes at that point as any ultra runner or like how many toenails can you lose? But
00:18:51
um that was the sorest part. My my feet from the from the run. But I felt healthy like there's no
00:18:58
>> there was no sign that there was something else going on really. And even
00:19:02
>> yeah right through until I had the treatment for the cancer. Um I felt good. Yeah. Which is now that's hard to
00:19:12
not sort of second guess how your health is when you never actually felt unwell.
00:19:17
So yeah, now on the other side there's a there's a fear. >> Well, that's the thing like like
00:19:22
everyone knows all too well the importance of early detection with these things. Um, it's hard to see how you
00:19:27
could have been any earlier than what you were. >> And for me, I uh I consider myself very
00:19:33
very lucky. One that I kind of know I know my body and how I sort of heal and uh I know the human body thanks to my
00:19:41
work and I knew that that was wrong, but I could also see the lump and I could I
00:19:48
like that doesn't look normal. That's not normal. Um and I should do something
00:19:52
about it. So there's some people with oral cancers and tongue cancers are more
00:19:56
in the back of their throat and they just have a tickly throat or a sore throat and you don't know that it's
00:20:01
something else at that time. So I mean definitely if you see something in your mouth uh you should get it checked out.
00:20:08
Um and those coughs and colds and um coughs that linger that just aren't getting any better. You know, get things
00:20:14
checked out where one of um one of my cancer camp friends from Daffodil House in Deneden and he'd had a a sore throat
00:20:21
for the better part of sort of seven eight months before found out that it was cancer and so his was he had lymph
00:20:27
involvement when um so they spread mouths big blood supply easy way out around the body. So oral cancers are
00:20:34
aggressive and they spread. >> Yeah. So I was lucky um in that sense and got onto it quickly and once uh we
00:20:41
had that diagnosis the wheels moved pretty quickly. Um >> what's um yeah take us back to that
00:20:48
moment the diagnosis. >> Are you fearing the worst? Had you been on your phone googling?
00:20:53
>> Uh yeah I'm a researcher >> or phone research comes back as cancer
00:20:58
though doesn't it? >> I know Dr. Google is brutal. But um >> were you fearing the worst or were you
00:21:05
>> Yeah, I I I hadn't really shared it with anybody else. Like uh I didn't want I'm
00:21:11
also a worrier and I care very deeply about what other people feel and fear and I didn't want to worry my family
00:21:20
before I had the diagnosis. So we I when I got back uh I went to my GP and she and I were both like, "Wow, I mean
00:21:29
you're healthy and everything else is good, but it's weird. it's just wrong
00:21:32
that that's there. So, let's do this. Let's get that in play. And then so we
00:21:35
went I went to Denine and she sent a swab and um photo off to the Denine crew and they um
00:21:42
yeah they got me called me down um once they got that referral that took maybe a
00:21:46
week 10 days and they're like we'd like to we'd like to see you tomorrow. Can
00:21:50
you come to Deneden tomorrow? Uh and took that biopsy and I knew I I knew what that result was going to be. Um,
00:21:59
yeah, it just was it didn't sit right with me what that was looking like, but
00:22:02
I hadn't necessarily said that to anyone else. I'd started to try and prep my
00:22:08
husband um and my boys like once I had they came down to Denine and we stayed with my in-laws down in Beluth for that
00:22:15
weekend um and it's like well I'm having this biopsy because there's a
00:22:19
possibility that it is this. Um, so yeah, I knew um and then because >> even even though even even though you
00:22:27
know though there's there's still a little bit of a slither that hopes you're wrong, right?
00:22:31
>> Maybe I'm wrong. >> You're going with your gut. But >> yeah, I was like it's just oh there's
00:22:34
just some Yeah. It just doesn't feel right. And then I mean it's 3 and 1 half
00:22:39
hours from Monica to Deneden. So when he when he took the biopsy he was like do you want to come back and get the
00:22:45
results in person or are you comfortable getting these results? Um, and obviously
00:22:50
if I call you, there's no guarantee there's someone with you when that happens. Um, and I I want I want the
00:22:57
results as soon as you have them. Um, but then you obviously, as you say, start googling what treatment for this
00:23:03
what it is. And it's um it's pretty confronting really. The I mean the first
00:23:08
the first port of call for any for any oral cancer is to remove it. So that's
00:23:14
that's your tongue. So when he rang me to say you have um we've got confirmation that it's squamous cell
00:23:22
carcinoma so you have um an aggressive cancer of your tongue um I was googling glossctomy I literally had that screen
00:23:29
open in front of me and so glossctomy is the removal of part of your tongue so partial hemi full glossctomy like a
00:23:36
little bit half your tongue whole tongue um and I was googling them when he rang
00:23:40
so I yeah I had a >> I had an inkling Um so that was pretty that was pretty um
00:23:49
an intense time because then what they do is we need to plan your treatment and we're hopeful that uh if this it's small
00:23:57
enough that we will be able so they have to take the tumor and then like a centimeter of healthy margin around it.
00:24:03
So if it's infiltrated into anything else they cut out the healthy stuff too.
00:24:07
We think we'll be able to do it just with that because of where it is in the
00:24:10
tongue and what it looks like. Um but we need to make sure it hasn't gone anywhere else. So then got referred for
00:24:15
scans. So common places for oral cancers are lymph nodes and lung, liver. So they
00:24:21
did a scan of the rest of me and knowing and then takes time for those results to
00:24:26
come back. So knowing I had cancer but not knowing how far it had spread um or if it had spread was that was a brutal
00:24:34
couple of weeks. And he did say to me at the time he's like look this is what it
00:24:37
is. this is what we need to do so that we can make a treatment plan and this will be the hardest two weeks of your
00:24:43
life. Yeah. Cuz just the unknown, the human brain doesn't like the unknown. Like at least if you have a um the
00:24:49
parameters, you're like, "Okay, well that's what I'm working with now." It's
00:24:53
like, you know, it can be, you know, trail running kind of analogy and you're
00:24:56
like, "Oh, well, we're going to start this race. We're just going to put you
00:24:59
in the bush and you got to get there and no, I don't know. Don't have a map.
00:25:03
Don't know anything." Um but you got to try and aim for that and it's like Once
00:25:07
you know that that's a trail or you've got two rivers to cross and along the
00:25:11
way you might have to >> climb a ladder or two, you know, then you can make a plan and the same and
00:25:15
that's like once I know where it is in my body, okay, well then that's surgery
00:25:19
or is that chemo or is that radiation or actually am I planning for some >> pretty big changes for my family? Yeah.
00:25:27
So that was fullon time. >> So are you alone when you take the phone call?
00:25:30
>> Yeah, I was at work. >> Oh [ __ ] Yeah. How was does the room start spinning? Yeah, when you hear it
00:25:37
is um looking back it's fascinating and my need to get out was probably really
00:25:44
highlighted at that time. Like I cope with things by going out on the trails and moving. So I took the phone call and
00:25:51
okay. So I was in this private room cuz I was in my in our treatment clinic at work and I was I was googling uh and and
00:25:58
then it's like oh I need to tell my husband. I need to and um and I I closed my laptop and I basically
00:26:09
hit dial on my phone and I just ran into the car park. I'm like standing outside
00:26:13
in the car park where there are other now other people around. Our CEO was there, one of the athletes and I'm like,
00:26:18
"Oh my god, okay, where do I go now?" Because I just was like, "Oh, I just got
00:26:23
to get out to tell." Yeah. It was fascinating that Yeah. I was I was running. I was like, "Get me out of
00:26:30
here." And then realizing like, "Shit, I I can't run away from this." It's like,
00:26:35
"This is this is what's happening." And uh he's like, "Do do I need to come to
00:26:40
you now?" So he was he was probably 10 minutes away. Uh and I was like, "No,
00:26:45
I'm going to go back inside. I'm going to go back inside. I'm going to close my
00:26:49
laptop properly. I'm going to put in my bag and I'm going to come home. I'll see
00:26:52
you at home." But it was like uh yeah, hindsight. It's just fascinating. That
00:26:56
was my response. took the news and I mean when I'm working with people like on the snow if we if we had something
00:27:02
big happen and you follow those process and you do that and in the moment you do
00:27:06
you know you follow the process and I did that in the clinic I was like okay and that so what's next what's next
00:27:12
what's next and then when I had to actually deal with the emotion I was like what what your brain tells you to
00:27:17
>> do that um yeah couldn't quite compartmentalize that anymore >> it's funny like you never know how
00:27:22
you're going to I I think the stats that 77 New Zealanders get diagnosed with
00:27:27
cancer every day. So 77 people every day >> having this phone call or this face to
00:27:31
face meeting that you had and everyone's going to react a different way. >> Yeah. A different way until how you know
00:27:35
how we cope and how we process and whether that response or your is right then or whether it's once you've
00:27:42
actually had time to >> Yeah. take that on board and think about what that might mean. Yeah. Yeah. 77.
00:27:48
It's a big number. >> It's a big number. Massive number. like one in one in three New Zealanders in
00:27:53
lifetime >> are impacted by it directly or with someone they know. Yeah, it's alarming.
00:27:57
>> It's huge. Yeah. >> Um during this time like the I don't know the days or the weeks after that,
00:28:03
what was is there a conversation that stands out as the toughest that you had to have?
00:28:07
>> Um yeah, I mean, yep, there were the ones with my boys. >> Yeah. As a parent,
00:28:14
>> how did you and your husband navigate that? Did you come up with a sit down
00:28:17
together and come up with a strategy or >> um not I guess I mean we t we do tend to
00:28:23
talk everything through as a family. We're quite open in the the way we communicate and they were there when I
00:28:30
had the biopsy so they knew that I was waiting for results. Um and they didn't
00:28:36
come home that day at the same time. So I was so that we did tell them essentially individually the the boys.
00:28:43
Um and it's interesting you know in hindsight they responded exactly as I knowing their personalities exactly as I
00:28:51
would have expected them to respond. Um and again that immediate emotional response that is unique to each of us
00:28:59
and then then the coming back together and okay what do we do now? But it was, you know, one
00:29:06
one I talk about um sort of being the fixer and he um he was like, "Okay, well, what does that mean? Is I'm going
00:29:14
to have surgery?" And so, you know, it's probably going to affect my speech or
00:29:18
might affect my um um my ability to eat or, you know, and we'll just we'll see.
00:29:23
We'll make those plans. He was asking questions along that like, "Okay, what
00:29:26
happens next?" And he disappeared off and came back about half an hour later
00:29:29
and was like, "It's okay, Mom, cuz we're just going to we're going to blend your
00:29:32
food. I've been I've been looking on TikTok. We're going to blend your feet. You're
00:29:36
just going to talk a little bit. Look, and we're going to blend your food and
00:29:39
it's all going to be okay. So, you're like, I have a solution. That is how
00:29:42
it's going to roll. We've already ordered a magic bowl. >> We have figured it out.
00:29:46
Everything. Yeah. Get yourself a And the other one, the my youngest like the an immediate emotional response, which was
00:29:53
exactly how I thought, you know, the I don't want you to die and um and and a
00:29:58
big hug. and then again later all coming back together as a okay what do we do next but just we're all very individual
00:30:05
in our you know in our responses um and learning to navigate that together is uh
00:30:12
>> yeah that's hard for families cuz we don't all we don't all respond the same
00:30:15
way to stress and pressure >> yeah so I >> I suppose their their big fear would be
00:30:22
are you going to die >> now how do you how do you answer that what do you know
00:30:26
>> yeah uh at at that point the answer was I don't know. I don't I don't know.
00:30:32
>> I hope not. But >> yeah, that's like I don't know. The the
00:30:36
um Yeah. So, the biopsy back and I have cancer. We're going to see whether that's anywhere else and then we can
00:30:42
plan treatment. As long as it's not anywhere else, um then things will look better. I mean, it's a different
00:30:48
conversation that you'd have with younger kids. Um but uh but yeah, that we we were relatively upfront and we we
00:30:58
don't think that that is well, we're hoping that's not the the case. Um but
00:31:02
these are the steps and it's going to be rough for a while. It's it's going to be
00:31:06
rough regardless. >> Um yeah, things are just going to change for a little bit. I'll try and figure
00:31:11
out what's going on with mom. >> So May 2023, that's when you have the
00:31:16
operation to remove part of your tongue. [ __ ] How nervous are you that morning
00:31:19
or the night before? Oh yeah, there's not a lot of not a lot of sleep to be fair. Insomnia is a thing in my life
00:31:25
anyway. Like it's how how I roll. So throw in yeah, throw in that. Um was uh
00:31:32
>> yeah, I was pretty pretty scared. Just it's just so unknown and I didn't know
00:31:38
um yeah, the extent of of what they were going to need to take when I'd had my
00:31:42
pre-planning um appointment about 3 or 4 weeks beforehand, they' found another little
00:31:48
lesion under the front of my tongue. So it's like what are you going to find
00:31:50
once you get in there? So um it had grown and it had spread obviously. So that was pretty intense. I was just
00:31:58
recording my voice left, right, and center and sending, you know, sending voice messages instead of uh instead of
00:32:04
text cuz I was like I love a good chat and like I really like to talk to people and I was just um yeah really scared of
00:32:13
losing my voice like my my ability to interact, communicate. Yeah. So, uh, yeah, made some journals and I
00:32:21
distracted myself with that and attempted to eat, you know, the night before we'd gone out for a feed and then
00:32:27
obviously I wasn't really eating that morning cuz surgery. Um, but yeah, just
00:32:31
trying to keep busy and then I was an early they take you in relatively early on the day. Um, so I was I think first
00:32:38
on the first on the list. Um, yeah, made our way into into the hospital. It's
00:32:44
like it's the weirdest thing. And it's like, you know, so give my husband a
00:32:47
cuddle and say I love you. Um I wonder whether you're going to actually be able
00:32:51
to >> Yeah. say those words again. >> [ __ ] >> Yeah, that was pretty.
00:32:58
>> Yeah, that was a time. >> Yes. So, so February 2023, you're lining
00:33:05
up for this 100 mile race and you know it's going to suck and you know it's
00:33:08
going to hurt and you don't know if you're going to make it. There might be
00:33:10
a DNF, but a DNF. And then 3 months later, you've got the same sort of thing, the anxiety, the nerves, the
00:33:15
stress, but I imagine it's just completely different. >> No idea what that It's like. Yeah. No
00:33:20
idea what that's going to look like on the other side. >> So depending on like how much how much
00:33:26
of the tumor they have to take from the tongue. Then um sometimes they'll do
00:33:32
grafts from so like a forearm flap and they um they'll graft it. And I didn't
00:33:36
think that it was going to be that for me, but you you don't, you know, you don't have that necessarily that
00:33:40
awareness before you go in. I had um I'd been told what the expectation was, but
00:33:45
there's still like I don't I don't know what's going to wake up >> like and then um you know, what are
00:33:51
those results going to show? Is that going to be it? Am I just in healing phase from then?
00:33:56
>> Um or Yeah. Or do we do we have bigger bigger things to also prepare for beyond
00:34:03
that? Yeah. >> Yeah. with these um video messages that you you recorded and sent out that you
00:34:08
talk about. Um some of them have been made into this documentary movie. And there's a there's a quote from from one
00:34:14
of these messages in the movie. It says, >> "I will get through this thing. And I
00:34:18
may not sound like me, but I will be me. >> I'm going to do it with all of you
00:34:22
behind me, and I'll see you on the other side." How do you feel when you hear that now?
00:34:28
Is that the last one? Yeah, that was um that was maybe yeah, it was maybe two days just before I headed to Deneden
00:34:37
>> and I yeah makes I remember how that that me felt. Um, and yeah, just the
00:34:45
just that fear and the unknown. And I just really wanted to I had so much support from family and
00:34:53
friends, from the trail running community, from our local crew in Wanuka. And I wanted I wanted to be able
00:35:00
to thank again, it's like that saying I love you to my husband before the surgery. was I wanted to be able to me
00:35:06
say thank you before I had the surgery cuz I didn't know what my speech was going to be like. I didn't know how I
00:35:13
was going to be afterwards. So yeah, I um I want to give her a hug cuz she was trying to be really strong and share
00:35:21
information and and um yeah, provide I guess a little bit of hope and gratitude, but she was
00:35:28
>> freaking terrified at the same time. >> Yeah. >> Yeah. Yeah. Did you um Yeah. Did you
00:35:35
write any um like in case I don't make it >> content for the kids? >> Yeah, I've got a few recordings.
00:35:41
>> Yeah. >> Yeah. >> So, I've never seen the light of day.
00:35:43
>> No, they're more Yeah, more like messages. The I love you and I'm really
00:35:48
proud of you and Yeah. like a happy birthday, happy things, you know, like um >> yeah, just those messages and I had
00:35:57
locked them away my in my brain and my uh some of the voice notes. So, I shared all of the I shared all of my journals
00:36:05
with Ben, who eventually made the documentary, but lots of those voice notes are just still stuck on my phone.
00:36:11
And when we were doing a fundraiser uh recently using the documentary and I was like I'll do some recordings cuz it's
00:36:19
easier for me than the writing just ramble and then see how see what comes of that and I found them and I just was
00:36:27
just sitting listening to them having a good wh cuz it's it just brings it all
00:36:32
back again. And it's like those were so heartfelt and there was so much fear
00:36:36
associated with making them, but also the feeling that it was really important to have that available for my boys.
00:36:45
>> Well, just the the mindset that you have to be in to record that content in the
00:36:49
first place. Eh, it's uh >> Yeah, >> it's it's it's a it's a it's a love note
00:36:54
of goodbye. >> Yeah. Yeah, pretty much. the um just the well the the what if I'm really hoping
00:37:02
that these don't need to be used but if they do I want you to I want you to hear
00:37:06
me I want you to yeah I mean you hopefully you feel it here in your in your heart but I want you to be able to
00:37:12
hear me say those words >> and that was yeah that was really important for me I haven't played those
00:37:18
to the boys because I still get to say them even with my lisp but I but I get to say those words so now they hear it
00:37:24
in my new way >> so you you have um 20 to 25% of your tongue removed. Is your I didn't I
00:37:31
didn't know you beforehand. Is is your has your speech impacted or affected or
00:37:34
is it? >> Yeah. So I I notice um and when I say 20 like in that uh the documentary in one
00:37:41
of my journals I talk about that that's sort of the oral tongue. There's a heap
00:37:43
of tongue at the back but I had like uh the the tumor was you know 1 and a half cm um by the in size and then they take
00:37:52
healthy margin from around that. So, but it was all on the side of my tongue. So,
00:37:57
not far enough back that it has affected my swallowing. So, from a um yeah, an eating point of view, I'm again really
00:38:06
lucky on that sense. But I'm missing and I'm missing a big chunk of the side of
00:38:11
my tongue on the right side of my tongue. And where they remove that and um and essentially fix it part of it to
00:38:17
the floor of my mouth, I so I don't have the same movement in my tongue. And the
00:38:22
second tumor um area was under the front of my tongue. So they removed that. So it made the tip of my tongue really uh
00:38:29
thin. So they folded it over. I had like a bubble. So what was essentially the top of my tongue is now the the side and
00:38:36
bottom of the front of my tongue. And now so it does just doesn't move the same way. Uh I don't also from the
00:38:42
radiation I don't have saliva on that side of my face u my of my mouth. Um so
00:38:48
it's quite dry. So some of that's really hard from a speaking point of view. And
00:38:52
so things like the the sl sounds are are hard. Like I don't have the ability to,
00:39:00
>> you know, make those. I don't have the tongue to make that. >> What's a sl like sliver and slope
00:39:08
sl you try working in a sport that is slope? >> Say ski slope three times fast.
00:39:14
>> Yeah. Yeah. Ski slope. Ski slope. Ski slope. >> Are you doing all right? SL and but it's
00:39:21
worse when I'm tired and it's worse when I'm cold. So I also work on the snow,
00:39:26
right? So you know have to um double buff my face and you know bury myself in jackets and and you try and keep my my
00:39:35
face moving. But um yeah, it can be a little bit hard on the radio sometimes on the mountain.
00:39:40
>> Did did you ever think um why me? Yeah, I this reminds me of actually when I saw
00:39:46
a counselor after I uh our youngest son was born really prematurely and so um we
00:39:52
had some support at that time too and one of them you know talking to me about you know lots of people say why me and
00:39:58
sometimes it's why not me and at the time I would that made me really grumpy
00:40:03
it's like well but actually you know why yeah why not me why you know why so
00:40:09
there's been lots of things over you know various facets of my life that have
00:40:14
been relatively stressful. Uh, and it's like, wow, it's just adulting, isn't it?
00:40:19
Adulting is hard. There's lots of things happening to lots of people that, you
00:40:24
know, we see or we don't see. And we, you know, how we >> how you just got to deal with them. It's
00:40:30
um I can have a little angry pants moment or, you know, get sad about these things, but then I've still got to deal
00:40:38
with them at the end of the day. So how I do that is the >> the the important thing for me and you
00:40:44
know getting people around me to help me through that. >> Yeah. >> That's definitely one thing I've got
00:40:49
from doing this podcast like almost 300 episodes now and I've had some amazing
00:40:53
people on some just you know uh inspirational people, high performers, survivors of different things and you
00:40:58
realize um >> everyone goes through some sort of [ __ ] >> Um the why not me thing is good.
00:41:02
Especially with cancer as we said 77 people a day. You're actually not that special if you get
00:41:06
>> not special. You might think, "Yeah, but we're not that special." It's like,
00:41:09
"Yeah, here's another one. There we go." It >> it sucks, but you're most definitely not
00:41:13
alone. >> 100%. Yeah. >> Um, what was the lowest point through that that whole period? This is this
00:41:18
we're not even at the um the the post tongue treatment stuff now. So, we're
00:41:22
just at the >> Yeah, I mean, the lowest Yeah, the lowest point through there was
00:41:27
definitely the the unknown and the fear and the the in between of the the um the
00:41:33
diagnosis to the extent of it. So that fear there uh waking up um postsurgery and going I can I can swallow and I can
00:41:44
kind of make myself understood at this point was pretty awesome. Um but it was I was sore. So making sure we got that
00:41:52
right was that was pretty sore. I mean you don't bite the tip of your tongue or
00:41:56
you burn your tongue and you know how sore that is. a cheese toasted sandwich. Yeah. Like,
00:42:02
oh no, my burns. It burns. Um, yeah. So, that, you know, there was a there's a lot of raw
00:42:10
area on my tongue. So, pain was um yeah, pain was needing to be addressed. Um, so
00:42:17
that was that early stage. um a way you hack up with a bus stitch was pretty stressful when you're in Monica and the
00:42:24
the places to get things seen are like a an hour away and you know in Dun the ambulance come and we're going to need
00:42:30
to we're going to need to transfer you um because we can't deal with that here
00:42:34
and it's still you know an hour away. So those kind of things that you needed to
00:42:38
>> address and then uh yeah and then into the radiation which was um >> yeah that was that was pretty brutal the
00:42:47
6 weeks of of radiation um >> yeah so when I I went back for my follow-up postsurgery and you get the
00:42:56
hisytologology results and uh I was very hopeful at that point that it was going
00:43:01
to be as they'd hoped just uh we've chopped it out and out on you get on
00:43:05
with your life. >> Off you go. If you work on your speech and you know, go and go,
00:43:10
>> go and do Royy's Peak. >> That's right. Get out. Get out. Okay.
00:43:12
Uh, and unfortunately, um, yeah, they're like, so it's bigger than, um, than we thought, uh,
00:43:25
because it's growing so quickly. Um, so it's moved beyond the stage that we had
00:43:30
it at. Um, and it had what's called perural invasion. So there was a nerve grow through the tumor and a nerve
00:43:39
involvement in a tumor is like a fast train out of wherever it is to in terms of spread. So it's a real it's higher
00:43:47
risk and they said if we'd known that before we did the surgery we would have
00:43:50
done a resection of your neck you wouldn't so you had surgery and remove the lymph glands in your neck as well.
00:43:56
So we need to we need to deal with those and also because of the size of it we need to use radiation on your tongue. we
00:44:04
could go back in and do another surgery for your neck. Um, but seeing as we're
00:44:08
radiating, your tongue will well will fry your neck at the same time basically. Um, and so that became the
00:44:16
next plan was uh yeah, how we would then manage that as a family because obviously you can't have six weeks of
00:44:23
radiation from Wuka. So um yeah, making plans around around moving to Deneden and I mean
00:44:32
that's where the support of the cancer society came in and just that the incredible facility down there in Death
00:44:39
House. >> Yeah. Known as um cancer camp >> cancer camp to us six uh six week that
00:44:44
were there. That's what we called it. >> Long-term resc what a good time. So that's um that's
00:44:52
July July July 2023. Um >> yeah. >> Yeah. Did did you I don't know how to
00:44:59
put this, but did you meet anyone there who who didn't make it out the other
00:45:03
side? >> Yeah. Yeah. Um Yeah. The uh beautiful Aloma who passed away um earlier this
00:45:11
year. Yeah. And she was man she was so strong um and she was so sick when we were in there and just so strong. um
00:45:20
just really inspirational and um thought things might have recovered and then yeah this year yeah things changed for
00:45:29
her. Um there was a group so there was a group who had been there for a week before I arrived and I so they they were
00:45:38
most of them six weekers and I was 6 weeks so we had this fiveweek crossover and uh one of the women who was there
00:45:44
with them um also passed away. Um, so yeah, those really close bonds that people have, but we we know also
00:45:54
understand about the consequences of what we have and what we're going through. So, um, yeah, really rough. Um,
00:46:05
but just taking that, yeah, that time and taking strength from each other. And, uh, I mean, I still, we still have
00:46:13
reunions, our cancer camp crew. Um and I yeah I I did a screening of um Onwards and Monica last week and Naughty came
00:46:25
through to one of my cancer campers came drove through and to watch it and it's
00:46:29
just like it's just so special connect there's just a level yeah just a real understanding of
00:46:36
what um what you're going through at the time and even in there we'd all have
00:46:40
good days and bad days and it would just there was just an understanding that that's how it was. So, we'll help you
00:46:45
with >> we'll help each other with meals or we'll help or we know you need company
00:46:49
at this time or actually just need a hug where you just need to be left alone and
00:46:53
there's just that understanding. So, it's an it was incredibly um special time amongst a really
00:47:02
>> brutal time. Um, and I think I mean so many times in moments of stress or
00:47:08
periods of stress in our lives, we form these really incredible bonds and you have these incredibly special moments.
00:47:14
Um, and amongst all of that awfulness. Yeah. And I, you know, I wouldn't have
00:47:19
met those crew without being there. And they're just these amazing people. So
00:47:25
>> yeah, I can't I just can't imagine what the communal areas in um in Dor House
00:47:30
are like. like there must be just a like a sense of like fear and uncertainty but
00:47:35
also just so much love and >> gratitude and >> yeah yeah I mean it's um it's a pretty
00:47:41
incredible facility so and to then the canc society offices are there in the front uh and then you go through that
00:47:47
into essentially the accommodation zone um and there's a shared kitchen and dining area and a shared um lounge uh
00:47:55
and TV and jigsaws and magazines and things and and so you could be together but apart in that space if you like I
00:48:01
need to be around other people. I don't um but I don't have to be involved in
00:48:06
the conversation so much and lots of I mean we we had discussed it with the the the cancer society crew there. It's like
00:48:13
not everyone has the same bond that you guys have we all came in at the same time. So I think that probably makes the
00:48:20
difference too. were there together for so long, but it's just this this um was
00:48:24
a really safe space and then around that um each individual accommodation rooms um so you could retreat to your space in
00:48:32
your personal space if you needed it. And it was literally across the road from the hospital. So, you know, walk
00:48:37
out the the door and cross over and have your treatment and be able to just go home and crash if you Yeah. if you
00:48:44
needed. So, just this um incredible space to be able to Yeah. home away from home during what's a pretty horrific
00:48:52
time. Um, yeah. So, just uh so so grateful for for that facility through the through the cancer society. Yeah.
00:49:01
>> So, that radiation 30 30 consecutive days. >> So, 30 days over six weeks. It was every
00:49:07
weekday. >> Okay. Monday. Yeah. >> So, you go home in the weekends to
00:49:10
Wanuka or >> um the first couple of weeks. Yeah. So radiation um you think sort of turnover
00:49:16
of cells you know like when you scrape yourself and you heal and it takes a couple of weeks for things to come
00:49:20
completely right. So when you have radiation um you don't necessarily notice change straight away. Um so
00:49:27
there's a sort of lag period. Um and so that means whatever that lag was at the
00:49:32
beginning that's going to continue at the end. So it took me um I started to
00:49:37
it was interesting post some of those early radiation uh days be a bit buzzy and might just feel a little bit tingly
00:49:44
in my tongue and that was it and then uh and then started noticing some change in
00:49:48
my mouth. Um, and so those first couple of weeks I was relatively comfortable, tired, starting to get a little bit
00:49:56
fuzzy, but tired. But I would go home at the weekends. And then um, so radiation of the tongue and mouth
00:50:04
is pretty brutal. You just end up with a mouthful of ulcers and a face that looks
00:50:09
like you've been in the sun for 6 hours. Um and so pain becomes pretty big and
00:50:17
then you eating becomes a problem. Uh so then energy becomes a problem. So as that went on that just got progressively
00:50:25
worse and for fatigue reasons. And then for um pain relief reasons. So morphine and motor vehicles don't go together. So
00:50:35
not allowed to not allowed to drive long distances. I stayed and I was like I need to get my pain under control. Need
00:50:41
to hunker down here and just get through these last couple of weeks. So um we had
00:50:47
we had a bit of a plan as a family that um so I travel a lot with my work and uh
00:50:55
and Cory, my husband travels a bit with his work and so that they're also kind
00:51:00
of used to us to me being away for periods of time. So it was like, okay, we need it to be as normal as possible
00:51:06
for our boys. So you stay in Monica and they go to school and we do the things and I'll go away. It's just like me
00:51:13
being on tour except I, you know, when I come home, I won't have been to quite an
00:51:17
exotic place and I probably won't be bringing tour presents, but um and then
00:51:21
as it got further on, like how tired um mom's going to come back a little bit
00:51:25
different each week. Um but we try we're just trying to keep things the same for
00:51:30
them. So Cory stayed and and I'd see um and the boys each weekend and those first few weeks um my sisters basically
00:51:37
alternated coming in to coming down to Deneden. Um to spend some time with me and just help come to some of those
00:51:44
appointments and write down the information that I was trying to absorb but probably not absorbing it very well.
00:51:49
Uh and then yeah some you know visits from friends but just really hunkered down those last couple of weeks just to
00:51:56
try and get through before I came home. >> Get the job done. >> Yeah. Yeah. Um, you'll be able to do a
00:52:01
better job explaining this than what I could ever do. All I'm basing this on is
00:52:04
what I've seen in your documentary, but the um the radiation looks awful. So,
00:52:09
you you there's like a green mesh sort of net thing over your head and it's
00:52:13
sort of like bolted into a >> onto the table. Yeah. >> Table and then into an MRI.
00:52:17
>> Yeah. It's a CT scan. Um, and then so they >> it's the they mold that to your face
00:52:24
when you first u when they join your treatment planning. So, it's like a plastic thermoplastic sheet and they
00:52:29
warm it up and you they mold your pillow so that it fits your head so you don't
00:52:33
move. Um, then obviously because it's my tongue, they mold a a tooth splint so to
00:52:39
hold my tongue in place. So, it's essentially went in my mouth and held my jaw so I can't cook. And then they mold
00:52:46
the plastic over the top and they fit those two things together. So when you have your radiation for head and neck
00:52:52
cancer that goes on, you literally can't talk and you can't move. >> And um it's you get given a 10 to 15
00:53:01
minute treatment slot. Um you get put in that mask and uh it's probably a minute or so they do
00:53:10
um a a CT scan, a low um intensity CT scan to check that everything's lined up. And then the treatment itself was
00:53:18
about 90 seconds. So in terms of being bolted to the table, maybe five minutes. Certainly feels like longer than that.
00:53:26
>> But um >> yeah, for like for a lot of people just the um the thought of that would be the
00:53:30
worst nightmare. You think claustrophobia, panic attacks? >> Yeah, for sure.
00:53:34
>> Um what did you do? You do like box breathing or meditation or >> blood breathing. Just focus on the
00:53:40
breath. Focus on the breath. Um yeah, I yes I tried all of those all of those things and the the last few trying to
00:53:50
see how good my counting was and if I could time it because it it the the sound when the CT scan was on versus the
00:53:56
sound when the radiation on was slightly different and I would be I knew it was 30 seconds of this and 30 seconds of
00:54:01
that and 30 so try like was like a competition to see if I could count. So that was quite useful because it just
00:54:07
made my brain focus on something else. Um I um I had just enough movement most of the time apart from one day which was
00:54:16
a bit rough uh where I could just flutter my eyelashes and I mean I could see through the mesh and they had um
00:54:24
lovely blue sky picture above you know. Yeah. Like up on the and I could just see this nice nice picture on the roof.
00:54:31
Um, and I was really disappointed actually because when I had the the original CT scan and the um and the mask
00:54:37
was made, it was in a room that had this beautiful blue sky and cherry blossoms and I really love that and that made me
00:54:42
think of home and my mom and I just Yeah. So, I I wanted that that picture on the roof. But anyway, I could see the
00:54:49
blue sky and the clouds and so I it was like sort of seeing beyond that um mask and it felt most of the time like just
00:54:57
someone was really gently holding my head and if I focus on that and just quietly focus on my breathing, it wasn't
00:55:03
so bad. Um there was this there was one day where I had a slightly earlier appointment time and I'd slept really
00:55:10
badly and I was sore and I uh woke up and I was a little bit puffy and you know you wake up in the morning and
00:55:16
you're a we a we a we a we a we a we a we a we a we a we a we a wee bit puffy
00:55:18
um but usually as you get up and get moving some of that goes and I had to basically go straight and have my
00:55:23
appointment and um and the mask I couldn't blink and I couldn't see beyond
00:55:29
and that was my that was mile one and only decent panic attack in the um in the mask, but they give you a little
00:55:39
buzzer. It's like you've got a bomb detonator in your hand and they're like,
00:55:43
"Push this if you need anything." And when I put it on and I was like, "Oh."
00:55:47
And you are you all right? And I was like, "Yep, yep. We'll just keep going."
00:55:51
So, put it on and they clipped everything in and they went to leave the room and I'm like,
00:55:58
"Come back. Come back." I just was like I just I couldn't ground I couldn't put
00:56:04
myself in place in that room and I just Yeah. So they took it off and they sat me up and we calmed me down. We can do
00:56:12
this again later. Oh no, I can't do that later. I'm like I need to we just need
00:56:16
to do this now. I know what that's going to feel like now. So just give me 30
00:56:20
seconds and get my breathing back under control and lie back down. And I went and I so I
00:56:26
went into that knowing what that would feel like. and I could close my eyes and just attempt to breathe through it. And
00:56:33
that was the only time and I think it was again because something was different like I change in my brain. I
00:56:41
like to I like to make a plan and kind of have an idea of what's coming and I
00:56:46
didn't know that it was going to feel like that that day. But it's like it's
00:56:49
pretty rough for some people. I have another friend who's had um head and neck uh radiation and she needed some
00:56:56
form of sedation before every appointment by the end of it. Um because just otherwise it was panic attack
00:57:02
straight away. >> So it's a yeah it's a full on time and I don't think I had that concept of what
00:57:07
it was >> going to be like until I yeah till I got there. But why why would you no
00:57:14
>> should you either don't need to know anything about all of that. Um, where's
00:57:18
the um Did you keep the green mesh mold? >> Currently lives in the hall cupboard.
00:57:24
Green lantern. It's um I had great fun with that on the drive home. And I took it up to I took
00:57:31
it up to Hamilton when we did a the fundraiser out there. So like had it with me. Got some excellent conversation
00:57:38
in the airports and there's my my buddy in the lounge. But I I don't I can't
00:57:42
bring myself to get rid of it. I just But I don't quite know what to do with
00:57:46
it. So it just lives in the cupboard and they bring it out when it's needed.
00:57:49
>> If if it was if it was framed somewhere. >> Yeah, there's lots of people do art.
00:57:55
>> People do art with it. Decorate it. >> But I was like, yeah, I wonder how I'm
00:57:59
just trying to think how it would make me feel like like part of it for me would probably be a reminder of
00:58:03
something that I don't want to be reminded of, but also part of it is um >> just how how amazing technology is and
00:58:08
how lucky you are to be alive. >> And it's Yeah, it is really it is really
00:58:12
cool. It's been really cool to have that and be able to explain that and show
00:58:17
that to people and even like being able to take the little mouthpiece out and be
00:58:21
like and this is you know this and they'd take it out and they'd sterilize
00:58:24
that every day and make sure that was okay and put that back in and >> um yeah so it it's kind of an
00:58:29
educational piece but as you say yeah I look at that and be like that was a time
00:58:35
that was a time >> you see it in the hallway every day >> yeah I don't see it in the hallway it
00:58:39
was like in the linen cupboard somewhere down the dump down the bottom Did you did you learn anything about um
00:58:45
resilience or mental toughness that you could never learn from, you know, forcing yourself to do tough stuff?
00:58:51
Yeah, I I I like to think well I do I mean I do think that probably Ultra has taught me
00:59:00
a lot about mental toughness and what physically I could cope with also mentally what I could cope with and um I
00:59:08
was able to and you know in top level sport both as an athlete and um as a provider for support staff for athletes
00:59:16
teaching me about what doing tough stuff looks like um and I definitely think that gave me um some
00:59:26
clarity and some um yeah some uh tools in my toolbox when I went through um that and you know and vice versa the
00:59:35
teaching of uh essentially don't sweat the small stuff >> you know or I mean sweat it but maybe
00:59:42
just for a short period of time not we're not saying ignore emotions but you
00:59:47
know like it's oh yeah well see how that feels Okay, moving on. Yeah. >> And um the metaphorically speaking, not
00:59:56
talking about the the green mesh mask, but were you like um a mask wearer? Like did did your family have any idea about
01:00:02
just how [ __ ] tough it was for you? >> Were you quite good at sort of um
01:00:06
>> I do tend to wear masks, especially around my children. >> Um >> understandable. I think I think most
01:00:11
moms probably would. >> A certain level of you know, it's like I want to be honest, but I also I want to
01:00:16
protect you a little bit. >> Don't want you worrying. >> Yeah. Yeah. worrying unnecessarily. So
01:00:21
if there was things that were really black and white, we were we were quite clear about that. You know, this is a
01:00:26
surgery, this is going to be the outcome. Yes, maybe it might lead to this, but we don't know that. So, we
01:00:30
don't need to throw push that at you. Um, but I um yeah, there were times when I was just
01:00:38
so tired or so sore and I couldn't hide that anymore. And I think those were
01:00:43
probably rough times for the boys when it would be I', you know, I'd go to do
01:00:48
something and it it just really really freaking hurt. Um or I just had had a terrible sleep because I'd been so sore
01:00:55
and you know just just crying and like I just can't make decisions and I'm sore
01:01:00
and I'm just crying. And I actually don't think necessarily that that's a
01:01:05
bad thing for them to >> see. Like moms and dads don't and we're we're not super human. You have to be
01:01:12
tough all the time. If I'm not I'm not taking things out on you, but this is
01:01:16
actually how I'm feeling and I I need to >> um I need to be able to cope and I'm not
01:01:23
trying to make you hold any of that, but this is how I am at the moment. Um and so I think some of those days were
01:01:30
probably a bit tough for the boys. Um I had Lucas talking to um yeah to people at one of the the showings in uh Oakland
01:01:39
and um and it was a your mom mom tried to to yeah essentially look after or hide not hide things but tried to hold
01:01:47
things together for us and it was um seeing her come home each week just that little bit that little bit worse that
01:01:53
little bit worse. um and watching that change and how hard that was. Yeah. For them. Yeah.
01:02:02
>> Did it change you as a person at all? >> Um I like to think no. >> Yeah. Are people like have you had that,
01:02:12
you know, Hail Mary moment. Uh and it's like no, I feel like there's been it's
01:02:16
probably more um you know, just cemented for me things that are important. I've
01:02:22
had Yeah, there's been a few big things that have for various reasons through
01:02:28
it. Yeah. Um things that have happened to me or people close to me that have taught me about life. um and you know
01:02:40
putting the important things first and and um and looking after ourselves and the people we care about and and and I
01:02:48
think it probably just reinforced that rather than uh the necessarily changing me, you know, like I I know I sort of
01:02:56
honed over the years the things that I need for my well-being. And it used, you know, I now do a little bit of work with
01:03:03
that at work with other support staff about how we, you know, work with our our health team about how we look after
01:03:11
ourselves. We're all very good at, you know, um, making sure the the athletes
01:03:14
are okay, but looking after us. And and part of it for me, I know that I so I need to I need to use my brain. Um, I
01:03:23
need to get out in nature. I need to exercise. Um, I need to have time with other people. and I need some time by
01:03:31
myself and those five things I need but there's not a specific task associated
01:03:36
with that anymore. So, you know, used might have used to be, oh, go and run 50k.
01:03:42
And now it's like I just need I need need to move in nature and get my heart
01:03:46
rate up and feel like I've pushed a little. I need to get out in the fresh air. like I mean when I was sick and
01:03:50
having my treatment and I was still trying to do some work remotely um until I couldn't and I had very supportive um
01:03:59
like bosses and my my crew at both high performance sport and snow sport it's
01:04:04
just amazing uh so it's like we'll do what you can we do what you can but when
01:04:08
I got to the point where I like I can't read a journal article anymore that makes no sense to me
01:04:13
>> but I still need something to occupy my brain my brain and you know that became
01:04:17
jigsaw puzzles and attempt sedoku, but I can't do those when my brain's fully
01:04:21
functioning. So then I'm not. But you know, it's like use something. So yeah,
01:04:25
there's things things that I know I need in my life. So it's probably clarified
01:04:31
>> for me. Yeah. Just it's really important to keep those things in order. All the
01:04:35
wheels fall off. >> Yeah. And um like we were talking about at the beginning, the glass ball thing.
01:04:41
Um but you can't just like um have this epiphany like right, I I now know what
01:04:45
is important and what's not cuz life goes on. You still have to work. Yeah, you kids have their own lives to
01:04:50
>> lead. Exactly. Trying to get that balance for them and and I love my work.
01:04:54
I love the challenge of my work and I you know the when we're working with athletes and trying to solve puzzles and
01:05:02
performance or injury and like I love that stuff. It's such a challenge for my
01:05:06
brain. Um, so I want that to be part of my world and I want to get back on the trails, but um, like it's like there's
01:05:14
it's just finding that balance and what's what's actually necessary for
01:05:17
that flow >> at that time. Yeah. And >> Yeah. And there are times in your life
01:05:23
where you might put more priority on one of those than than another. Um, and it's
01:05:28
uh for me I I have a tendency to say yes to a lot of things. Um, and I'm working
01:05:33
very hard. Maybe you I'm working very hard. I'm not always successful, Dom.
01:05:38
But I but I am working very hard on on that. Um because I I like doing the things and I yeah I like learning and I
01:05:47
like >> yeah getting involved and um sometimes that's at the detriment of the glass
01:05:54
ball that is health. So I need to you know whether that's physical health, mental health like it yeah things
01:06:00
snowball. Um, so that's a very important >> glass ball to be looking after. And
01:06:06
sometimes I actually need other people to >> point that out to me that maybe you're
01:06:10
doing a little bit much right now. >> So, so you get through that 6 weeks um
01:06:16
in Denedan radiation every day, Monday to Friday for 6 weeks. When so that that finishes then then what how long is it
01:06:22
before you get some news? Yes. >> What do they warn you after the last day?
01:06:26
>> Yeah. So I was still having so I went home um and you get the warning that so
01:06:33
whatever your latent period was at the beginning before your symptoms started ex expect symptoms to continue to get
01:06:39
worse for that same period. So for me it was about 10 days. Um afterwards so we need to monitor you really closely. Um I
01:06:48
lost a [ __ ] ton of weight. So part of that was also making sure that I was getting enough in cuz I couldn't uh I
01:06:56
couldn't eat it properly at that point. Everything was either pured or liquid.
01:07:00
Um and uh and keeping pain under control. So I those first few weeks every I still went back once a week
01:07:09
drove down or got driven down and had a checkup um for those first two weeks and
01:07:14
make sure we're on top of all of that. And then it was like a fortnight and then it was a month and then it became
01:07:20
three monthly checks. Um, and now two years on it's four monthly checks. >> Is is there a moment where where they
01:07:27
say we think you're good, we think you're cancer free? >> Well, I uh
01:07:32
not in the next few years for me, Dom, no. So, that's what everyone wants ultimately. Like an absolute
01:07:38
>> I would like an absolute tick, please. Yes. Gold star. Off you go. Get on with
01:07:43
your life. >> Don't Don't show your face around here again. No more for you.
01:07:48
>> You greedy. So greedy with the radiation. >> Needy needy needy. No, I um Oh god. I uh
01:07:58
5 years >> 5 years. Uh although um so they start pushing things out. So I'm I'm at four
01:08:06
months. I'm I'm thinking hoping ever the optimist that that will get put
01:08:12
out to 6 months um soon cuz everything has been okay and then they go to a year and then and then at 5 years you
01:08:20
generally get the we haven't seen anything. So the biggest um sort of time for recurrence um especially for oral
01:08:27
cancers is in that first two years. So nearly through that which is nice. >> Fantastic. Does it do you feel do you
01:08:33
feel physically and like you're out of the woods? Well, I yes and no. Like yes
01:08:39
for the most times and then again when you're a bit tired or maybe a bit stressed about anything in general and
01:08:44
the worries you know disappear. So yeah it's very much um uh it's um yeah just battling those inner
01:08:54
demons on those front and again I never felt unwell. So it's really hard now to
01:08:59
go h I wonder or you know you get a cough that's stuck around for a while and it's like maybe it's spread maybe
01:09:06
like it's back maybe and you know how many times can you check your tongue in
01:09:10
a day if you've burnt your tongue on a toasty and you're like is that going to
01:09:13
heal in a couple of days? So there's there's so much doubt and second guessing about those things. Um,
01:09:19
and then it's how you manage to flip that and be like, "Okay, well, I know
01:09:23
that if I find something or if I'm worried, I have these appointments, but I could ring. There's a because I'm in
01:09:29
the system, there's a clinic every Monday at the in the ENT oncology um department, and I could ring and go and
01:09:36
get things checked out." And that's the importance, I guess, of staying
01:09:40
>> on the books. So I um I have been told I was told last time maybe the time before
01:09:47
um it's a bit strange my tongue cancer like the the risk factors that the normal risk factors kind of
01:09:54
aren't there for me um and that they might keep me on the books for a little
01:09:58
bit longer because um yeah they're just not really quite sure why. And that's
01:10:05
reassuring. It's like I'd really like to get the gold star and sign off, but I
01:10:08
also it's really reassuring to go ah I don't have to go back through wait for
01:10:12
an appointment with my GP, wait for a referral, wait for a second and get down and that time that that puts in when you
01:10:18
know how quickly things can change. Um so that's reassuring. I don't mind
01:10:23
getting held on to for a little bit longer if it gives me a little bit of >> Absolutely. Peace of mind.
01:10:29
>> Peace of mind. Yeah. >> Um and what about the physical recovery? So after having the operation on your
01:10:34
tongue and then six weeks of radiation um >> I remember reading Lance Armstrong's
01:10:39
book back in the day. So this is um >> top bloke. >> This >> that's another channel together the book
01:10:47
he wrote. It's it's actually a great book. >> He did write a good story.
01:10:51
>> It's called it's not about the bike and he was like I think given like 2% chance
01:10:55
of survival with testicular cancer. >> Um so before that he was he was one of
01:10:59
the fittest men on the planet. May maybe to help with drugs. Who knows? Um but he
01:11:04
he talked about getting back on the bike and like cycling up a a hill and an old
01:11:08
lady riding past him on a bike. Yeah. What was it like for you going from running a 100 miles in February to When
01:11:14
did you first run? Later that year? >> I did I did start running. So I did a
01:11:19
little bit of um walking and then trying to turn that into Yeah, that it was more just um I felt
01:11:30
I guess that underlying fitness from having had all of that um training beforehand and it wasn't a huge amount
01:11:38
of time before you know like um February I was still running in April so I ran through my time when I was away right up
01:11:46
until the May when I had my surgery. So I was still pretty fit at that point. So
01:11:51
you know August you coming out of there was some deconditioning just general fitness but there was sort of this low
01:11:57
level there but I was just generally tired all the time and my brain pretty foggy. So um and I just that first
01:12:05
period when I said I couldn't really eat when I knew that I was going to have the
01:12:10
surgery and the radiation. I was talking to, you know, some of the crew at work and we're sort of lucky because we have
01:12:16
quite a few departments that support the athletes. So, I was like talking to the
01:12:20
jock and talking to nutrition and I just like, you just got to start eating. You
01:12:23
just got to you got to eat cuz I was I was like race size at that point was there's not a lot on me. Um and so I
01:12:31
think I put on maybe 4 kgs before I even had the surgery. Um and then that dropped again below um below pre pre uh
01:12:40
pre um race levels and then by the end of the radiation I mean I put on 5 kg and I lost 10 is I'm not that's quite a
01:12:49
large proportion of my body weight and I just yeah so that trying to build that back up and just having the energy and
01:12:55
especially around pain and um and just brain fog and not being able to sleep. So I I got back into um doing a little
01:13:03
bit of jogging and I I mean even now I feel like if I had to do something long tomorrow I could I could go out and do
01:13:13
it cuz also that's I'm bit stubborn. But um and so it was that I wanted to go
01:13:17
back and be around my trail running crew cuz so in the September of that year I went to Tapo cuz I knew all of my my
01:13:27
tailwind gang were going to be there and my husband and I went and we did um the
01:13:32
12k which was we we joged through that. It was and we did that together and that
01:13:38
was a pretty emotional day just um I'm back with the people I yeah back with my
01:13:43
my fam uh and then and then because I survived that without busting myself. So then I signed up for the wild that year
01:13:52
which was a you know they did a number of um of distances and I signed up for the 30. Um so my my good friend S and
01:14:01
Mel um law were you know Mel was creating that event and I really wanted to be part of that and again it was
01:14:07
wasn't about racing it was just going and being around those people. So, >> wasn't about whatever time I I don't
01:14:12
even know what time I finished that in, but um but just to be able to get back out there and and be around the the
01:14:19
people who had supported me through that. Your tribe. >> My tribe. Yeah. So, that was
01:14:24
>> Yeah, that was cool. And I haven't I haven't got back to racing like I
01:14:29
don't and I don't know where that sits. also um a long history of trail running
01:14:36
has resulted in multiple ankle sprains and I might have completely blown that out um on a downhill bomb in America
01:14:44
when I was away this year um and leaning towards some surgical repair requirements.
01:14:50
I mean like I've done all the work. Do you know a good physio? I I've done
01:14:54
>> physio are the worst at addressing their own issues. No, I've tried. I I have
01:14:59
really tried like strength and balance work and it's still I'm just so unstable. So anyway, racing and the
01:15:06
desire to race. I mean, they would never, to be fair, they would that it was never about
01:15:11
racing for me. It was about the event and being around my people and being out in nature. And I would push because I
01:15:18
wanted to see how far I could push. But it wasn't like wasn't about competing
01:15:21
with you or you Ruth Croft. Use Ruth Croft. Don't use me as example. I'm not
01:15:27
beating anybody. >> Cofty. I'll just be like, "Hi," on the start line and he can tell me how great
01:15:31
it was when I finished 27 hours after you. Yeah. Thanks, Ruth. Um, what a legend. Um, yeah. So, no, it was never
01:15:38
about it was never about competing with other people, but I would I'd love to be
01:15:42
able to get it back out there and just feel like I was pushing, but that was that's for me. And at the moment, I have
01:15:47
to do that kind of on my terms for >> um both for events, but also just time.
01:15:53
I mean, I I travel with snow sports, so in the summer >> I'm away in the winter. Like I we we go
01:16:00
chasing snow, so don't get the same opportunity. >> And I suppose it just um it brings home
01:16:05
what's really important. Suddenly you realize um a good result in one of these
01:16:08
events is not a glass ball. >> No, no, no. >> Not even close to being a glass ball.
01:16:13
>> Going and just being at the event and cheering my mates on. That's a good
01:16:16
that's a good ball, you know, like going and being in that environment, you know,
01:16:19
and going and and helping at a stand talking to people on the start or the finish line like that is cool for like I
01:16:25
just like ah yeah, all of these like-minded people who also just want to be out moving in nature with people who
01:16:32
like to do the same. Like that is >> that's um that's events for me. And also
01:16:37
you get to go to these cool places that you just don't necessarily otherwise get
01:16:41
to go to. Like that's that's what I love about trail running too. And I I mean
01:16:45
I'm pretty fortunate. I do live in quite a beautiful part of the world and there
01:16:48
are lots of trails available so I can escape to the trails whenever I want. But that connection with people part of
01:16:54
things is um that's probably the biggest bit that I miss about not being able to
01:17:00
do so many of the events. >> Yeah. The people piece. >> So um the documentary which we've talked
01:17:06
about a couple of times onwards. But is it going to be on YouTube? Are people going to like by the time this podcast
01:17:10
is out people going to be able to watch it freely somewhere or >> Yeah. So, uh, yeah, the the podcast Ben
01:17:15
WBank, what a legend of a human he is. Um, so my my mate who when, uh, we realized that I was going back for the
01:17:24
radiation, um, and he knew that I'd been journaling cuz people had started asking
01:17:30
me how I was doing and there lots of coms and I just didn't really have the oomph to do it. So, I was starting to
01:17:36
share things. So, some of my journals and messages for people to say, >> now I'm doing this is what I'm doing and
01:17:41
thanks. Um, and he s saw that I was doing that and he came to me and was like, "Do you do you want um do you want
01:17:48
me to help capture your story?" And I was like, "Well, sure." I mean, yeah,
01:17:53
that would be amazing. And in the beginning, it was same as like my my voice recordings was um it was we had no
01:18:01
idea what the outcome was going to be in terms of how I was going to be, let alone what we might make from all of
01:18:07
these recordings. But he was just like, "Look, I want I want you to have some
01:18:11
footage of stuff that you can't necessarily do yourself." So, he come to
01:18:14
to the hospital with me a couple of times, recorded me having some of my treatments, um, and trying to put that
01:18:20
together. And, you know, that might be something that you get to look back on and goof that was a journey or if it all
01:18:27
turns to [ __ ] it's something for your family to be able to look on. >> Uh, and if all goes well, touch wood.
01:18:35
Um, we can create something out of this. and um you know actually share my philosophy about life and resilience and
01:18:43
movement and nature and just you know hope um but also be able to use it as an educational tool and thankfully it's
01:18:49
become option option three at this point which is great and so you know I tried I
01:18:54
really really wanted to give back to the cancer society who had helped um me through my journey specifically and who
01:19:03
helped so many people and who've also really supported my family across years.
01:19:07
There's been a number of instances where they have been involved um in my life um
01:19:13
with my nana and my uncle and my mom um and helping us through you know and and more recently family friends and I just
01:19:22
I just wanted to be able to give back and uh and so we did we've used it as a
01:19:27
fundraiser specifically in uh Hamilton and what was raised there went back to the Wetto branch and in Wanuka what was
01:19:34
raised there coming to the um South Branch. I want to do another one in Deneden, but we want it to go wider. Um,
01:19:41
so Ben has very kindly said that we could use this film with the Cancer Society. So it was in um the Dockage
01:19:49
Film Festival this year was a finalist in that and he has essentially gifted that to the Cancer Society. So we're
01:19:55
using it alongside um their fundraising initiative which is marathon in a month which um is just encouraging people to
01:20:03
get out and move in some way the other. um the distance of a marathon in a month
01:20:07
or more if you want. Um but fundraising alongside that. Um so to be released alongside that um so through the cancer
01:20:15
society and links there'll be accessibility to see this film um and um yeah and one for fundraising but two
01:20:24
education and awareness um to be able to use it with the with the branches in terms of like even had chats with some
01:20:32
of them around um just I support these people all the time but I don't know what they go through. Um, so being able
01:20:38
to show some of that as well as for the people actually going through it or this
01:20:42
is what this is what you might expect and this is what helped me or this was you know the things along the way. So
01:20:47
yes, it will be available. The links are not necessarily available yet but just keep an eye on the cancer society or my
01:20:53
socials and we'll put it out as soon as those links go live but >> God could have been a very different
01:20:59
documentary. I don't know much about film making but I know it's never great when the main
01:21:04
character passes away. No, I mean it's a an emotional story. I'm sure it would be
01:21:08
and I'd really like for that I'd like there not to be a sequel but umh so yeah, we'll go with this we'll go
01:21:18
with the happy ending at this point would be great. Um yeah, I mean and I think >> um what I would say is I don't know that
01:21:27
it necessarily would have been the same film if it wasn't Ben making the film.
01:21:32
like it was an awful lot of trust to just be like, "Oh, here are my innermost
01:21:37
thoughts. You take those and turn them into something that the rest of the world can see." Um, and to trust him
01:21:44
that he would use that in a way that was still really authentic for me. And um, yeah, I just, you know, to allow him in,
01:21:53
but just also his way, his manner of being able to just be quietly there with me and support, but recording at the
01:22:00
same time. It's like, yeah, it was what a gift for me and my family. Um, but
01:22:06
also actually what a a gift from an educational point of view and, you know, for the cancer society. So,
01:22:11
>> yeah, 100% incredible. >> I'm I'm sure with with anything, the the
01:22:15
more you see something, the less impacted it has. And so, I'm sure you're
01:22:18
at the point now where you can watch it and it's not an overly emotional experience. But, can you remember the
01:22:22
first time you saw it? >> Yeah. >> What was that like? Were you complete
01:22:25
wreck? >> Yeah. It was like, oh, wow. Like, we saw it. We saw it. Um it was quite cool
01:22:31
actually. So Ben had approached um the crow at parody so in uh Wanuka the cinema there and they had allowed us to
01:22:39
show it just for my family um in the cinem. So it was on the big screen then too. That was the first time I'd seen
01:22:44
it. So my so it was my immediate family. So my um husband and kids and um some of
01:22:51
the uh >> the crew from Wanuka so our Wanuka locals had who' supported me there and
01:22:58
um yeah that was I was the first thought actually was like golly I'm really big
01:23:03
I'm really big up there very close like oh no and then I'd start seeing some of
01:23:09
the the jourers like oh no I know what I said this but I don't remember this. Um
01:23:13
but actually um yeah I I rode the emotions of that because um it wasn't just watching the story. I like relived
01:23:22
those when I watched it for the first time. And as you say like it's not you
01:23:25
it does dull a little bit when I watch it each time. But mostly actually I see something else that I Yeah. It just
01:23:34
triggers something else. So I I see something new each time I watch it. Actually I think I'm on maybe fifth or
01:23:39
sixth. Sixth or seventh. I might have watched it quite a few times. What's the
01:23:42
What's the hardest scene for you to watch? >> Oh, what is the hardest scene? Um,
01:23:49
there's probably two journals uh when I am writing or talking rather about the
01:23:56
panic attack because I remember that panic. Um and um the one where there's a scene where I talk about
01:24:06
the it's the first weekend that I can't go home and I just farewell my sister
01:24:11
off to the um to the airport cuz they all live in the North Island and um and I was trying to journal while I just
01:24:20
changed the sheets and I was just like that. Oh, I'm just [ __ ] I'm here. I've
01:24:26
still got three more weeks and it's like I'm it's rough already and I Yeah. That
01:24:31
um they're probably the hardest. Yeah. Yeah. And just being like, "Oh, yeah."
01:24:36
And and I guess I um I watch it from the view of I know how I felt then. I also know what came next. And um so that some
01:24:45
of those are hard, but they're they're probably the two key moments for me that
01:24:50
oh the recognition that it was bad and it was going to get worse and I was just going to have to suck it up and deal
01:24:56
with it. Yeah, that was um yeah, that's probably the hardest one for me when I
01:25:01
look at that. >> People that watch it, what do you hope they take away from it?
01:25:05
Um I hope I hope that they take it as um yeah a a one education um but more so just I guess a story of hope and a way
01:25:18
to cope and that there's always ways that we can look at things and support we can gather from the people around us
01:25:26
or the strength we can take from um the people around us and actually that um there's an awful lot of strength that we
01:25:34
have in ourselves that we don't necessarily realize until until you have to use it. Um, and I just yeah, I hope
01:25:42
it allows people to just um see that it's okay to pause and take a moment and
01:25:48
figure out you know what's what's important to them and um and focus on that and you know get out and and live
01:25:55
life. I mean that was onwards is was how when I first started sharing my story was how I would sign off all of my
01:26:02
message. It was like, oh yeah, and this is happening onwards. And that was, you know, it's like, oh god, here we go.
01:26:07
It's like an ultra, isn't it? You're like, it's the wheels are falling off
01:26:11
and I'm deep in the pain cave and I'm absolutely exhausted, but I've actually
01:26:14
got to keep going. So onwards. So, you know, just one step at a time. >> Um, focus on the important things and
01:26:20
and just keep quietly moving forward. Yeah. >> And what advice would you give to
01:26:25
someone newly diagnosed with cancer or going through some other life-changing events? Um I think uh probably first
01:26:32
thing it's okay to sit in all of those emotions at the beginning like are you
01:26:40
just trying to figure out actually how you feel about all of those things get support around you and reach out for
01:26:47
help even when you're not necessarily sure what you need. um if you can if you
01:26:52
can get support and I mean some people live you know by themselves or in isolation there are there are there is
01:26:59
support so you know the cancer society is one but reaching out to people um so it doesn't have to be your immediate
01:27:05
friends and family seek help and um yeah just ask questions continue to to get the information you need so that you can
01:27:13
cope with it in whatever way you need all we're all a bit different um but taking the time to get support around
01:27:20
you have your medical questions answered and um and just quietly work your way through it. Um it's probably my yeah my
01:27:29
big piece. Take a moment. The powers in the pause like take a moment um because it is huge that that that immediate
01:27:38
information is huge and give yourself time and support to sit with it. M >> if if your if your two sons and your
01:27:46
husband were in the other room, >> um what three words would you like them
01:27:49
to say about you behind your back? >> Wow. Um I do not know how to answer that
01:27:56
question. Um what would I um I would like three words maybe to describe me. I would want it to be um
01:28:05
what would that be? Love. Um yeah, resilience, strength. Um and fun. >> Yeah.
01:28:15
>> Yeah. Like I trying to you just want to see the the best like I love and and
01:28:21
that connection is so important. Um taking strength in yourself and each other but life's fun or it should be you
01:28:28
know put those three things together and it's a Yeah, it's a it's a good time.
01:28:33
>> They're all great words. Yeah. Are you proud of yourself? >> Yeah, I think so.
01:28:37
>> Yeah. >> Yes. There's no right or wrong answer. >> Yes, job. I'm very proud of it. Yes, I
01:28:43
am. Yeah, like I am. I think um >> I think that mean there's lots of things
01:28:48
and sometimes we don't just sit back and go, "Shit, that was pretty good." And on
01:28:52
like on, you know, the the strength to get through this, the physical stuff, you know, from the running, the ability
01:29:00
to be vulnerable. Um, and uh, and I think being able to use that and be okay with sharing what is a
01:29:10
pretty raw story. Um, and be vulnerable in a way that will hopefully help other people.
01:29:16
>> Um, yeah, I'm I'm proud of that. Yeah. Yeah. Look at me sitting here with my
01:29:22
arms crossed. I'm also like slightly uncomfortable about sharing it. I'm
01:29:25
proud of me. >> You've um Yeah, a lot of New Zealanders struggle with that question. Yeah, you
01:29:30
you've um come close to crying or you have cried like a couple of times, maybe
01:29:33
three times on the podcast today. Were you >> Yeah. Were you this emotional beforehand
01:29:37
or were you quite a tough cookie beforehand? >> I uh I'm a little bit of a crier.
01:29:45
>> It's always been there. >> Yeah. I um I used to say I like to think
01:29:50
of it as like I'm sort of this like a kettle, right? And uh and it's just
01:29:55
emotion, good, bad, otherwise. And every so often it just bubbles over and it's
01:30:00
just emotion. I always used to say to my husband and we were having discussions about things and I would feel very
01:30:05
strongly about things one way or another and I would cry and I was like why the hell am I crying? I don't know what I'm
01:30:10
crying and be like Cy listen to my words not my tears listen to my words not my tears because sometimes it just comes
01:30:18
out when I feel very strongly about things. So yes um yes I was probably always a crier. I do I do hold emotions
01:30:26
very close to the surface and possibly more than I used to, but as I say, good and bad. Like I I will cry at the really
01:30:34
awesome stuff too these days. Um so yeah, also you like I'm a middle-aged woman, so I'm crying crying a lot. So
01:30:44
you know, like a I do I do think uh yeah, emotions are it's okay to share them. In fact, I think it's important.
01:30:52
So >> 100%. Yeah, I think that's a good good space to be playing in. Crying at the
01:30:57
stuff that you're you're grateful for and that you're upset about. I think
01:31:00
that's right. >> There's just so much emotion. It's just bof out my eyes. Here we go. Here I go
01:31:04
again. >> Hey, well, I'm glad you're doing well. >> Thank you.
01:31:06
>> And um yeah, thank you so much for being here today to share your story on the
01:31:10
podcast. >> Thank you. Thanks for thanks for having me. >> Helen Baron, you're a great New
01:31:14
Zealander. Lovely to meet you. >> You, too. Thanks, Dom. Hey, hey, hey.