Latest / Unbalanced with Cerys Davage / 77. Turning my brain tumour story into activism (ft. Molly Fenton)

Transcript

77. Turning my brain tumour story into activism (ft. Molly Fenton) · Unbalanced with Cerys Davage

0:09
Hello everyone, welcome back to another episode of Unbalanced
0:12
with me, Kerry Savage. I hope you're all doing well
0:15
despite it being really cold outside.
0:17
The sun is shining and the weather has been really, really
0:21
lovely this morning and it's, I think lifted both of our moods
0:24
on the way to radio platform. We're back and I'm here with
0:28
another Cardiff gal, Molly, hi. Hello, thank you for having me.
0:32
It's so nice to have another Cardiff gal on the podcast and
0:36
to make use of this amazing studio space.
0:40
I don't think we've fully met in person, we have online a few
0:43
times and with different mutuals and things like that, but I'd
0:48
love this opportunity to get to know you properly.
0:51
So tell us a bit about yourself. Where are you from and what do
0:53
you do? Hi, my name is Molly Fenton.
0:56
I'm 23 years old. I'm from Cardiff in Wales very
0:59
proudly and I, I think I'd umbrella, umbrella what I do
1:05
under health activism. I've got 2 branches so one is
1:08
Women's Health. I started the Love Your Period
1:10
campaign. Well I started volunteering when
1:12
I was 1310 years ago. The campaign was established
1:16
when I was 16 and that campaign for Period Proud Wales, which is
1:20
the free period products in all the schools and the buildings
1:22
that you can get across Wales, which is awesome.
1:25
And then the other branch is brain tumours and as a young
1:29
ambassador for the Brain Tumour Charity, the first and only
1:31
Welsh one they've ever had and working on things like the Rare
1:35
Cancers Bill and a national brain tumour strategy and lots
1:39
of campaigning specifically for young women.
1:42
I'm very interested in that, that get unwell essentially and
1:46
life doesn't stop. So I talk about that online then
1:48
as well. So they're my different avenues.
1:51
So obviously you do this advocacy work because of your
1:55
own personal health journey. Tell us a bit about that.
1:58
So your diagnosis and everything.
2:00
So I live with a low grade glioma, which is a brain tumour,
2:03
and I don't remember a time in my life where I wasn't, I would
2:08
say unwell, but because I was so used to it, I genuinely thought
2:11
it was part of life. So I was having hormonal
2:15
problems and they started when I was very young.
2:17
I was taller than everyone else, so I was putting on weight.
2:20
I was one of these hospital controlled diets that never
2:23
worked. Life was all about testing to
2:25
kind of work out what was wrong essentially.
2:28
And yeah, that that then LED on to being 16 years old and
2:33
someone being sat in my house and telling me that it must be
2:37
really difficult to hear that I have a ticking time bomb in my
2:39
brain, which was a very peculiar way to say that I had a brain
2:43
tumour. So other words, brain tumour
2:45
don't feel very heavy for me anymore after hearing that
2:48
phrase. So yeah, I continued the work
2:51
and realised that a lot of of what I experienced and didn't
2:55
want to talk about or purposely avoided hormonally.
3:00
So after a few years of kind of like sitting with it and
3:03
realising that actually I really want to do something about it
3:06
and I'm already passionate because of all the period stuff,
3:08
because my periods were obviously coming to hormones
3:10
were a nightmare. And then I lost them completely.
3:13
And I didn't realise the impact that hard on your body as well.
3:16
So I thought I'm just going to talk about it all.
3:17
Like I'm ready of giving myself some time.
3:19
I've thought about how I'm going to do it in the safest way for
3:22
me and everyone else and we're going to go for it.
3:25
But yeah, I live with my brain tumour.
3:27
It is stable as we're recording this.
3:29
I'm just hours away from finding out if it still is, which
3:32
fingers crossed it is. And yeah, that was, gosh, it'd
3:37
be 7 years ago this month. So all going really, really well
3:40
considering. Wow.
3:42
Well, thank you for sharing that.
3:44
Obviously, we will dive a bit deeper into your life with it
3:48
and your advocacy. But I want to know, you know,
3:51
kind of from the beginning, growing up, I know you said that
3:54
you kind of stuck out a bit in school and everything else when
3:58
you had that initial diagnosis of the ticking time bomb, which
4:02
can I say on behalf of all of us listening, what?
4:04
That's such a crazy way to just drop a bomb on a child, like
4:10
just out of nowhere. It's, yeah, insane.
4:13
But I guess, like you said, the words brain tumour don't mean as
4:17
much, which is crazy because I guess one could look at that and
4:23
listen to that kind of information and be like, I just
4:26
don't want to do anything I want to hide.
4:29
What made you want to still carry on?
4:32
For many years I did stop and I did hide and I went down a
4:37
really difficult Rd with my mental health and became very
4:41
ostracised from society, which we hear a lot for people
4:46
diagnosed with health conditions.
4:48
But anything I go to around brain tumours or cancer with the
4:51
charities, I always hear that kind of like reintegrated into
4:55
society. That's what we want to do for
4:56
people after they're diagnosed. And I'm thinking, well, when did
4:58
we leave? Because if I left, where could
5:02
you get rid of my responsibilities, please?
5:03
Because I pay tax. And if I'm not part of society,
5:06
I shouldn't need to, you know, like putting it into that
5:09
perspective, it doesn't make sense.
5:11
So I think after kind of like all those years, something just
5:15
switched. And obviously, you know, we all
5:18
look online, you all search your diagnosis and do all the things
5:21
that I do not advocate for. But the reality is we do,
5:24
especially at 3:00 AM when Google is available 24/7.
5:27
And I was finding different people in different areas of
5:31
social media that maybe had a diagnosis and started making
5:34
friends with those people. I'd, I'd lost majority of people
5:38
around me because I had kind of removed myself from society and,
5:43
and I didn't feel kind of like understood by anyone.
5:46
So I made these friends and great friends.
5:48
And even if I'm friends with kind of like a similar diagnosis
5:51
to me, which was awesome. And unfortunately, I watched a
5:55
lot of them get sicker and I watched a lot of them pass away.
5:58
And in those moments, each time it was a reminder, I wouldn't
6:04
say lucky, but fortunate that I, that I am by pure luck, that
6:08
mine continues to be stable. And there's lots of
6:11
misconceptions, which I'm sure we'll touch upon again during
6:15
this episode. But I just thought I've got like
6:18
this beautiful thing, which is life, and I want to do something
6:22
with it and I don't want to waste away from it anymore.
6:25
So, and you know, it does sound a bit cringe, but every time I'm
6:29
like, gosh, do I really want to be doing this?
6:30
Or the statistics get too hard to hear over and over again.
6:34
I'm exhausted. And I'm like, I just don't want
6:36
to do it anymore. They're the people that are at
6:38
the forefront of my mind. And there's memories and that
6:41
final hug and the final conversation you had that always
6:45
sticks there. And I think about, you know,
6:46
they'd be proper kicking me if I stopped.
6:49
Like, what are you doing? Like you get to be here to do it
6:52
And I don't. Some of them would absolutely
6:54
beat me up. So it's, you know, realising
6:57
that I can do it. And so I'm going to.
7:01
And that doesn't work for everyone.
7:02
And lots of people may think that that's toxic and things
7:05
like that. I have heard that before.
7:06
But I think it's a, it's a person by person thinks we're
7:09
all unique, aren't we? So that's my drive now.
7:11
But it most certainly did take many, many years to simply just
7:16
stand up out of bed and go, actually, I've got to do
7:18
something with this. Wow, I'm sorry, that sounds
7:21
really difficult. But you know, usually when some
7:24
with a disability is opened up to their community, they finally
7:28
feel like they've got a place to belong.
7:29
But you've got that extra weight on your shoulders of kind of
7:34
carrying on the legacy for those that have passed away and to
7:39
just kind of carry on and live the life that they would have
7:43
loved to live. And I think that's a really good
7:46
motivation to just to life in general.
7:48
And I think even outside of the disability community, I mean, I
7:53
guess you can maybe say that you feel pressure to kind of live a
7:56
life that a lot of people yearn for or would have loved to live.
7:59
But also it's just that extra motivation that we only do get
8:03
one life. And it's kind of like a really
8:06
hard reality check that, you know, if we're only going to
8:09
live one life, who may as well do something with it, right?
8:12
Most definitely. And someone said to me, and it
8:15
wasn't even like they may have got it from a crate somewhere.
8:19
And someone said to me in an ordinary conversation, I love it
8:21
when people drop in like the craziest things.
8:23
You're like, you've just changed my life.
8:24
Like just by talking normally. They said you, you know, you
8:27
actually live every day. You only die once because
8:30
everyone goes, oh, you only live once.
8:32
And I was at one of these conferences and it was someone
8:33
else and who had a brain tumour whom unfortunately is no longer
8:37
here. And that stuck with me massively
8:39
because I'm not right today. I didn't quite do everything
8:43
that I wanted to. And I'm not on about like, you
8:45
know, the To Do List because I definitely don't get those done,
8:47
but kind of like just the things that I wanted to achieve in that
8:50
time. And instead of beating myself up
8:52
about it, it's like, well, realistically, I know that
8:55
tomorrow isn't guaranteed for any of us.
8:57
You know, that you don't have to have a disability or an illness
9:01
for that to be the case. But you know, I did what I could
9:05
and I'm as happy as I could have been today, and I did what I
9:09
could in my power to fulfil that.
9:11
And I showed up not just for them and for society, but showed
9:15
up for myself. And I think we all forget about
9:17
that last one. We have to do it for ourselves
9:19
as well. Otherwise, we're never going to
9:21
be able to achieve what we want to if we don't do things for us
9:24
as well. Yeah, exactly.
9:27
And you know, a lot of people say I'm only here today because
9:30
of me, because of what I've chosen to do.
9:33
I've only gotten to where I am not because of other people, but
9:36
because of myself, and I think it's time we.
9:39
Gave ourselves more credit about that, I think.
9:42
This episode is sponsored by the Folk Group.
9:44
Now, I'm sure we've all been there.
9:46
When we get an ad and think, why am I getting served this?
9:49
Or you see a brand campaign or content and it really misses the
9:52
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9:54
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9:56
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10:23
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10:25
When I say real people, I'm not talking about boardrooms in
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10:31
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10:34
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11:02
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11:15
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11:18
The Folk Group at the folkgroup.com or find them on
11:21
Instagram at The Folk GRP. So I want to move to kind of
11:26
now. What are your symptoms?
11:29
Today with a brain tumour. So I live with multiple
11:34
different labelled diagnosis that have come from this, this
11:38
thing. So it's umm, my whole body is
11:40
affected in different ways by these different things.
11:43
And I became very, very unwell a few years ago and they weren't
11:47
sure if I was going to come out of it.
11:48
So my body got very, very weak and I was very underweight and
11:52
couldn't do anything for myself. My sister cared for me full
11:55
time. So I live with kind of like the
11:58
subsequent effects in different ways.
12:00
So I love to talk about this because it's all the
12:02
embarrassing things I live with incontinence, bladder and bowel,
12:06
which is so fun, so sexy as a 23 year old woman.
12:09
It's, it's just like, you know, top things I've never been able
12:13
to sort out, like my teeth crumbling because of hormonal
12:16
changes and that's down to bone density.
12:20
I spent so much money on my teeth and I've just stopped
12:22
because I can't afford it anymore.
12:23
So they do continue to crumble, but that's OK, we're going to
12:27
sort it, we're going to do stuff about it.
12:29
And my taste and smell be massively affected.
12:32
So one day I could eat, I've got my safe meal and that will
12:35
change very soon. And I'm, I'm could cry thinking
12:38
about the day that I'm not going to be able to have that anymore.
12:40
So it's always changing and like I can't be in the house if my
12:45
mum's cooking. I still live at home and
12:47
fortunately at the moment and I have to go out on a walk.
12:52
Fatigue, migraines, but the type of migraines where you're just
12:55
like dark room throwing up, can't move, can't exist, and
13:00
they can last up to seven days. And that's a nightmare if you're
13:03
trying to work or just be responsible or show up in
13:06
society. And one no one wants to talk
13:09
about. Like my sex drive never came
13:11
back. And vaginal dryness is actually
13:13
the worst symptom of them all because I'm in so much pain and
13:17
no one wants to talk about it. And I've got this, these whole
13:19
of the menopausal symptoms. I lost my period now about 8-9
13:24
years ago, so haven't had it since.
13:27
And it's just, you know, working in Women's Health.
13:30
Like I understand the connections between symptoms and
13:33
things and how our bodies change when that happens because of our
13:36
hormone levels. I'm yet to actually sort it or
13:40
have anyone listen to me to sort it because other things take
13:44
priority right now. But yeah, those symptoms, a lot
13:47
of them are hormonal, and a lot of them are embarrassing or
13:50
people don't want to talk about, which are used to my advantage
13:54
because we really, really have to talk about them.
13:57
And, you know, they're part of our body.
14:00
So it's OK, we can say these things.
14:03
And you have no idea who's going to hear that and go, oh, gosh,
14:06
that's such an odd symptom. I didn't even know that I could
14:09
ask for help there. So I thought that it was me and
14:12
it was all in my head. But actually I deserve to be
14:15
able to live a life where these things can be managed a bit
14:17
better. Yeah, I mean, it is real, you
14:19
know, it's not in your head. And that's such a common thing
14:22
that disabled and chronically all people hear a lot.
14:26
But thank you for sharing that because honestly, I wouldn't
14:28
have had a clue that just having a brain tumour could link to all
14:32
these things that's in, they're in different parts of your body.
14:36
So I really appreciate you kind of opening up about that.
14:38
I think it's really important to talk about those kind of taboo
14:41
topics because the more we talk about it, the more people are
14:44
going to be comfortable to get things checked and diagnosed.
14:47
Because if they don't, and if we don't continue to talk about
14:50
these, these kind of symptoms will just make women be more
14:55
embarrassed about it and not want to talk about it.
14:57
And I think no, it's, it is so, so important to just be open
15:00
about it. And yeah, it's, it's silly that
15:02
it's still a taboo topic, to be honest.
15:05
There is definitely still room to talk about it.
15:08
I think we are definitely getting better as society.
15:11
But it's only because of people like you that's like so willing
15:13
to talk about their own experiences.
15:16
And I want to go back to the food thing.
15:19
So the smell, this is like such a new concept to me.
15:23
It was a common symptom of COVID, wasn't it?
15:25
To lose your sense of taste and smell or for things to taste
15:29
different. What do you kind of taste or
15:31
smell instead? Do you know what I mean?
15:33
Like, what's so bad that you have to leave the house when
15:35
your mom's cooking? That's crazy.
15:37
Everything is very metallic and blood like.
15:41
That's like the key thing for me.
15:44
So obviously it's very difficult to do anything.
15:45
You'll be around any people as well because it's like, I can't
15:49
be the odd one, but I actually feel like I'm going to pass out.
15:51
Like it's really overwhelming. And the taste of things, like
15:55
just the actual thing will change.
15:57
And I'm not on about, you know, like your taste buds changing
15:59
every few years. But it could have been something
16:02
that I like. I couldn't eat potatoes for
16:04
ages. And he doesn't like potatoes.
16:06
Like, come on. I mean, just like a plain 1.
16:09
And it tasted like, I can't even compare it to anything.
16:14
And it was so bizarre. And that's one of the things
16:16
that it's kind of like so up in the air at the moment because it
16:19
could be one of so many different things causing it that
16:23
I think, and I imagine so many people will get this.
16:26
We have symptoms, but we don't always have the understanding or
16:30
the label of where that thing has come from, or it could take
16:32
a while or people don't know because of lack of research or a
16:36
lack of understanding. And we're all individuals.
16:38
We are all unique. We could all have the same
16:40
diagnosis and it would be different in other people.
16:44
And I think that's why it's important to talk about those
16:46
weird ones because I could say, you know, I live with a visual
16:48
impairment, which I do when I know I said headaches by
16:51
something because they're extreme and all these, you know,
16:54
different things. But all of that was masked by
16:57
kind of like, these weirder ones because I thought that the
17:00
weirder ones were then causing me to be able to see less, you
17:03
know? So that's what's really
17:05
important to talk about those ones.
17:06
But yeah, it was very, very odd. And as you say, during COVID and
17:09
so many people understood what that was like.
17:11
And yes, I tried the orange skin and everything TikTok told you
17:15
to. And no, that didn't help or do
17:16
anything. But yeah, it does become a bit
17:18
of a nightmare and it changes. So like for three or four weeks,
17:22
it could be a few particular things that I can have or I know
17:26
that are OK to cook and everything, and then one day, so
17:29
I could go home tonight, make the dinner that I always have.
17:32
What is it? It's so plain and boring.
17:35
Oh my gosh. So potatoes.
17:37
Yeah, yeah, literally just plain potatoes.
17:42
And then I'll either get like some a chicken breast that I've
17:46
literally torn apart so I can chew it properly and I have it
17:50
all dry because otherwise I'll be sick because the nausea and
17:52
the sickness is a big one that I didn't mention.
17:54
But again, was a is quite a standard 1.
17:57
So I tend to fix on the others and keeping stuff down,
18:01
especially around stuff like the annual review that's coming up
18:04
for me in these different appointments is so difficult.
18:08
So yes, it's painful to eat. Yes, it doesn't taste like
18:11
anything. And yes, people laugh at me for
18:13
it, but it's it's getting food in my body, which our bodies
18:17
need so much. So yeah, that's my really boring
18:21
dinner that I'll be having tonight.
18:22
But I could go home and make it. And all of a sudden I can't go
18:26
anywhere, any of those things. And that then leaves me in a
18:28
difficult position because I've either got to there is quite a
18:32
bit of food waste. I try and hand off different
18:35
things to different people or give them away.
18:38
Or like, you know, if I had in a no bag of apples, I can't eat
18:41
anymore, I'll bring them into Cardiff with me and give them
18:45
to, you know, people sat on the street and be like, I don't have
18:47
any money, but you want an apple like that sounds weird, but you
18:51
know, because I don't want to waste that food.
18:52
But unfortunately that is kind of like the cycle and it's
18:55
expensive, but that's where we are with it.
18:57
It's a very, very odd symptom, and I guess you have to.
19:00
Scramble then to, you know, hopefully not tonight, but if
19:04
that does change, you have to scramble for food that you will
19:07
be able to keep down. And that sounds quite tough, I'm
19:10
sure. And I know you say it's
19:11
embarrassing, but it's just your reality.
19:14
You know, it's we all got to eat and trust me, that's not the
19:17
most boring of diets I've ever heard, you know, Oh wow.
19:22
You know, you know, like, you know, there's people that just
19:25
like don't have a taste and they just eat like beige food all the
19:28
time. You know yours is actually for a
19:30
medical reason. Well, I do, you know, I do have
19:33
my vegetables if I can beat, you know, sometimes it is an energy
19:36
thing. So I'm really craving that.
19:38
I will just cook a bowl of vegetables sometimes love them
19:40
raw because just eat some tennis 10 broccoli roll.
19:43
Like I've done that before because I'm so exhausted and sat
19:47
on the kitchen floor because the tiles are cold.
19:49
And I'm just like, I can't even blink without feeling like I'm
19:54
running a marathon right now. And when you say that to people
19:58
in the community, they go, I completely get that.
20:00
And it's very validating because the words that you could say
20:03
that, but it doesn't when you're in that moment and you feel it.
20:07
There's no way to describe what that's like.
20:09
So, you know, I do get my vegetables in when when I can
20:12
and I love them. And you know, I love to cook and
20:14
I always cook before and I've been cooking for myself since I
20:18
was a young teenager. It's something that I've always
20:21
loved and study day and nutrition course when I was in
20:26
and out of hospital a lot because I missed out on a lot of
20:28
education, I was really interested in it.
20:31
So I know the importance of all these things and I really want
20:34
to help my body as well live as long as possible and be as
20:38
strong as possible. And I did sign up for Cardiff
20:40
Half Marathon as well in October 2026.
20:43
I know I'm stupid for the Children's Hospital so I
20:47
actually need to get better. To always say get better, we
20:50
can't get better, but get, you know, stronger to do that.
20:54
Oh my goodness. So you one second you're saying
20:57
blinking feels like a marathon and then the next second you'll
21:00
say you are going to do a marathon.
21:02
Wow. Back to the food thing.
21:04
You also have free will. So like you can eat whatever you
21:07
want and whatever you're craving, which I love about
21:09
being an adult. It's.
21:11
Mad sometimes I'm just like, I can actually walk to the shop
21:14
right now. Sometimes I asked my mum for
21:17
permission and she looks at me like I'm mad.
21:19
And I'm the oldest in the houses, four of us in the house.
21:22
My older brothers moved out and, and you know, for them, they
21:25
just do it. But for me, I'm like, I call my
21:27
mum, she'll be away in work like 6 hours away.
21:31
But I said you're right. If I just pop to the shop, I
21:33
know it's dark, but can I go? And she's like, yeah, why are
21:36
you asking me? Or, or do you think it's OK if I
21:39
buy this? I keep forgetting, and I don't
21:41
know whether that's because I know that was a joke, but I
21:43
don't know whether that was because I've missed so many
21:45
years that sometimes I still feel like I'm 16 and I still
21:49
need to go. You know, I need permission to
21:51
do this and that. So that realisation that you've
21:53
just said like, Oh my gosh, I'm an adult.
21:56
I can make this decisions for myself.
21:58
Usually that's a scary concept, but for things like that, you're
22:00
like, yeah, I can do that. I just, yeah, it's mad to me
22:04
that I can literally most of the time do whatever if my own
22:07
health doesn't stop me, do what I want when I want.
22:10
It's crazy. I shouldn't be allowed.
22:12
I don't think what out. No, I love that.
22:17
It's such a strange thing being in your 20s.
22:19
I mean, I definitely still feel like a teenager sometimes.
22:21
Like sometimes I still can't believe that I'm engaged or like
22:25
my friends have two kids and I'm like this like teenage
22:28
pregnancy, what's going on? But actually, no, like it's fine
22:32
all in our 20s. It's such a weird concept.
22:34
Like it's definitely an in between still.
22:37
Like some days you're full on adulting and the other days you
22:41
just want your mum, you know, Like there's, it's a really
22:45
weird. Back and forth.
22:46
Between them both but also we will never stop wanting our
22:49
mums. So shout out to all the mums out
22:51
there, yes? I know you said that.
22:53
There's a lot of misconceptions about having a brain tumour and
22:56
I think you've already smashed a lot of stereotypes and given us
23:01
a lot of insight into life with a brain tumour.
23:04
But are there any specific misconceptions that you're fed
23:07
up of and you want to address? Definitely.
23:10
Benign is fine. We hear that all the time.
23:14
It is not obviously, you know, it's difficult to get in balance
23:18
here because some people are diagnosed and they live really
23:21
well with no symptoms, they have no health problems and if it
23:24
wasn't accidentally picked up then they wouldn't have known
23:27
sort of thing. So it's, it's difficult and I
23:30
get quite a lot of backlash online by getting this balance.
23:33
But we we've moved from benign to low grade.
23:35
You've got low grade brain tumours and high grade brain
23:37
tumours and high grade are very, very aggressive and have very
23:41
low survival rates. Low grade you can live longer,
23:44
you can live better. Or we're trying to hope that
23:47
people can. People's quality of life is
23:49
better as treatments move from, you know, kill all the cells and
23:53
it doesn't matter anything. We just want to kill the tumour
23:55
to let's think about quality of life and make sure these people
23:57
can live. But yeah, there's this whole
24:00
misconception that everything is completely fine and that is
24:04
genuinely what I thought. So I was very, very shocked.
24:07
And then being in the Young ambassador programme of the
24:10
Brain Tumour Charity, we've had young ambassadors die of low
24:14
grade brain tumours, which would have been seen as benign.
24:17
We've had young ambassadors in comas with low grade brain
24:20
tumours. And I think, you know, because
24:22
of that misconception, they're not taken seriously and they're
24:25
not seen as something that we maybe, you know, need to look
24:28
into things like that misconceptions as well.
24:32
So it is seen as a rare cancer, brain tumours.
24:37
However, one in three know someone with a brain tumour and
24:40
I think that that rare is used as quite a barrier.
24:44
So research is very, very little into these things.
24:47
The gold standard treatment in the UK is radiotherapy and
24:50
chemotherapy, but due to things like the blood brain barrier,
24:53
most people don't find that very effective.
24:55
And then they're going overseas and they're having to use that
24:58
money because it gets to the point where our, our
25:01
infrastructure, NHS cannot support brain tumour patients.
25:06
And then another big one is the, I know we talk about post code
25:09
lotteries a lot, but living in Wales, we heard it from the sun
25:12
earth that we've got too many hospitals, which, you know,
25:15
maybe we do, I don't know, I don't really know all the
25:17
hospitals in Wales, but we don't have the specialists and then
25:21
families have to travel. So I went over to Liverpool,
25:25
that's expensive and my mum came, my godmother came and you
25:29
know, and that's the train tickets, that's the travelling
25:32
around, that's the staying. All of that is funded and that
25:35
becomes very, very difficult. So those are kind of like more
25:38
of the structural issues that especially that benign is fine
25:42
thing. It's not fine.
25:45
And I think that conversation is coming up in a lot of things.
25:48
I've seen people talk about it in endometriosis as well.
25:50
That word can do a lot of damage.
25:53
So I really like this low grade shift, but we still need people
25:56
to take it seriously because you know, my tumour could grow at
26:00
any point, my tumour could kill me at any point.
26:04
And just because it's not the most aggressive type, that
26:08
doesn't mean that's not the case because the investment and the
26:10
research hasn't been done and therefore we don't have the most
26:14
effective treatments and ones that we know length and quality
26:17
of life. NICE guidelines haven't approved
26:20
like it came out two weeks ago that a particular drug that we
26:23
know really, really helps patients with low grade gliomas
26:26
isn't cost effective, that it extends people's good living
26:32
before needing that for the treatment for about 16 months,
26:35
which is awesome. But why is that not with the
26:38
money? So yeah, I think they're the
26:40
more boring ones. But then also, you know, we walk
26:42
around. Unless I said I had a brain
26:44
tumour, people wouldn't see it. However, there is a time in my
26:48
life where people might have gone.
26:49
Actually, yeah, I see it, the stereotypical what you look like
26:53
when you're I'll with anything. I don't, I don't quite
26:57
understand it. Like, yes, I can still, well,
27:00
actually, I can't make myself a cup of tea.
27:01
I keep throwing water all over myself and then I get bins.
27:04
And so that's that's a nightmare.
27:05
So I won't use that one as an example.
27:07
But you know, I can still show up in society and I can still do
27:09
things and I don't need you to make that decision for me.
27:13
And I've seen that a lot in activism, in youth boards.
27:16
I sit on people making decisions for me and telling me afterwards
27:20
like, oh, I turn that down because I've noticed you've been
27:23
really tired recently. And that misconception that just
27:26
because there's something that impacts my brain, it doesn't
27:29
mean that I can't still do those things.
27:32
And we should all have a level of accountability no matter who
27:36
we are and what we have. And, and I want to live up to
27:39
that, especially as someone that has chosen to be an activist, so
27:42
I can make decisions for myself, even if I struggle with the
27:45
basic ones, the ones that I know like my work and the activism I
27:49
do, I know. So on days where I feel like I
27:52
can't sort myself out my basics, usually I can talk about my work
27:56
pretty well. Like, it's really wired within
27:58
me, which is a very old thing. That doesn't mean I can't, you
28:01
know, make decisions for myself in that work.
28:03
And the amount of things that have been taken out of my hand
28:05
and made for by other people who mean well, but actually they
28:09
don't know me. So you can't make that decision.
28:12
So yeah, don't do that if you're a person that does.
28:16
They're my weird ones. OK, well, again, I've learned a
28:19
lot there and I guess I'm maybe a bit of a hypocrite, but I
28:23
think I just assumed that if if it was a low grade or benign
28:26
tumour that it just wasn't causing any damage.
28:28
But from what we've heard with your symptoms, it still effects
28:31
you day-to-day and you still live with that kind of, I guess,
28:36
anticipation of like, are things going to change?
28:38
You know, just because it's benign now or low grade now,
28:41
that doesn't mean it's going to be that way forever.
28:43
Umm, so you're still living with a lot of that kind of turmoil
28:47
and mentally as well. But the reason why I'm saying
28:49
that I'm a hypocrite is because I have an invisible disability.
28:52
So I know exactly what it's like to not feel heard and not feel
28:56
understood. Because if you look at us, you
28:58
think, oh, they're fine, they can do anything.
29:00
But actually there's a lot of things we can't do.
29:03
So there's a lot of things that if we bring up like, hey,
29:06
actually do you mind if we like don't do this or do you mind if
29:09
we do things a little bit differently?
29:10
They'll question you for it. And so I think we, we do have to
29:14
go through that, those extra hurdles just to get the same
29:18
kind of, I guess, respect or just the same kind of
29:21
understanding as people with more obvious or more severe
29:25
chronic illnesses. But I love that you're so
29:28
outspoken about it. I love that you're using your
29:32
own experiences to your benefit and raising awareness.
29:36
We need more people like you and not just saying that like the
29:39
work you're doing is absolutely incredible.
29:41
I've been following you online for a while now.
29:43
So tell us a bit more about the activism work that you do.
29:47
Gosh, where do I? Start and how do I end feel like
29:50
you're going? To list your CV now, let's start
29:53
with your. Ted Talk.
29:54
You did a Ted talk right? And two.
29:56
Two TEDx talks, yes, one for the NHS and that was around period
30:00
stigma and kind of at the sexual connotations.
30:03
So I took it a little bit further.
30:05
I didn't talk about myself in that one.
30:07
I was adamant not to. And then I really wanted to go
30:10
back to the reason why I started it and all that activism from
30:13
the start. If I look back, the reason I did
30:15
it was because of my experience. But I wanted the two to be
30:18
entirely separate because of my boundaries, which are very
30:22
important. I'll go back to boundaries.
30:24
And then I did one recently in the Senate that actually TEDx
30:28
took on Youth Voice. I've had some really bad
30:31
experiences as a youth activist to a certain extent, when I look
30:34
back on it, the amount of bullying and toxicity in
30:38
activism in in women's activism, it's really sad.
30:43
It is really, really sad. But you can see where bits of it
30:46
have come from because of everything women have gone
30:50
through as a whole just because of our gender.
30:53
But it's been really, really difficult.
30:55
So I wanted to kind of use that one to say This is why I do it.
30:58
I'm pretty terrified of what's going to happen.
31:01
As you say, I, I do live in that anticipation of going, is this
31:05
going to be the time? Is this going to be the simple
31:07
eye test that picks up that something is going more wrong
31:11
and kind of like the a lack of options that come with that
31:13
then? So that is a driving force.
31:16
So yeah, they were my Tedxes. They were very like when I was
31:19
really unwell, I made a bucket list and one of my crazy things
31:23
on there was to do a Ted talk. And then when an opportunity
31:26
came out to do a TEDx, I was like, yeah, I'm going to do it.
31:29
And the NHS one was huge. The Senate one was gorgeous and
31:33
I was really fortunate to do those.
31:35
So yeah, that's definitely a good start.
31:37
I do use social media, as you've mentioned, mainly LinkedIn.
31:42
And the reason I use LinkedIn most is because it's the stuff
31:46
that stands out and it's usually the people that need to hear it.
31:49
It's the employers. It's the people that maybe shy
31:51
away from these topics. You, you get big names on there
31:54
and big people that do big things and, and post like the
31:59
ones that I do and stick out in people's feed because they're
32:03
not, you know, conventional. It's like, oh, I'm proud to
32:07
announce I have a promotion. I go, I'm proud to announce that
32:10
I failed all my GCSE's. You know, it's a different sort
32:14
of thing because it stops people in their tracks and then they
32:16
read it and maybe they'll think. So I'll talk about what it's
32:19
like being in the big chair in the hospital and describe that
32:22
experience or, you know, in a waiting room or the lift, this
32:27
particular lift at the hospital and kind of go back to those
32:30
moments and explain what that was like and being in school,
32:33
because a teacher may read that and be able to support someone
32:36
else as well. And then Instagram, I do the
32:38
same. It's a little bit more funny and
32:40
really trying to break a lot of those stigmas.
32:42
So, you know, if I've got to talk about my vagina a little
32:46
bit to help people because they might be having a symptom that
32:50
they're scared to go to their doctor back so you don't want to
32:52
talk about it, then I'm happy to do that.
32:55
And that's where those boundaries come in.
32:57
You know, I am very aware that I pretty much expose my entire
32:59
body online, not physically shown.
33:03
Well, I talk about all these things and the messages I get in
33:09
return are fantastic. And then I go right, this, you
33:14
know, this is my line and this is what I'm going to stick with.
33:16
And every day I've got to check in with that because it's very
33:19
easy. When we're giving a part of
33:21
ourselves in this activism, we're talking about something
33:24
extremely personal to us, something that we experience all
33:29
day every day because, you know, disability and chronic
33:32
illnesses, yes, we have flare ups and different things.
33:34
That doesn't mean it's gone when we're not, you know, when, when
33:37
we're showing up, when we're doing things like this, it's,
33:40
it's still there and it's always going to, you know, be part of
33:44
of day-to-day. So it's important to acknowledge
33:47
that. So social media is good because
33:49
on those days where I can't get up at her bed or I'm sat on the
33:52
kitchen floor eating raw broccoli because I can't do
33:55
anything else, it's kind of like I can schedule those posts to go
33:59
out. And I know that I'm still
34:00
reaching people and I know that I'm still maybe giving something
34:05
on days where I feel like I'm not able to give anything that
34:09
is still going out there. And I feel that really helps me
34:11
personally when it comes to the brain genus stuff.
34:15
I've done a lot with the charity on.
34:17
So we've got the Rare Cancers Bill, which is now in the House
34:20
of Lords, It's gone through Parliament.
34:21
And if that bill passes, that would be fantastic.
34:25
And it means that we'd have, you know, more innovation
34:27
essentially around rare cancers, which which are quite a few of
34:32
those campaigning for a national brainstream strategy, looking at
34:34
barriers to innovation, barriers to people getting into research,
34:38
whatever I can get involved with.
34:39
Essentially, I really, really AM.
34:41
And I show up at the centre, then I make sure all the members
34:44
cross party know who I am. And we're getting there.
34:48
We really are getting there, which is good.
34:49
And that's really important. And then love your period, kind
34:52
of. It doesn't do it by itself, but
34:54
our aims were achieved by having all the period products and
34:58
having the conversation started. And I know menstrual health is a
35:01
whole other thing on itself, but I'm not qualified in it.
35:03
And other charities are doing fantastic work.
35:06
So we'd like to partner up with them and support them because I
35:09
don't need to copy exactly what they're doing.
35:12
You know, we, we were really, really happy with the products.
35:14
So it's about aiding that Welsh Government scheme.
35:17
There are still people not having access to period
35:19
products. There are still people really
35:21
struggling with their periods. There are still people staying
35:24
off school, there are still people losing their jobs.
35:27
There are so many huge barriers when it comes to that, that we
35:31
need to make sure that that scheme is reaching far and wide.
35:34
So we really, really try to get into this hard to reach areas.
35:39
My least favourite phrase because it's used as a reason,
35:43
but it shouldn't be like it's there, it's a fact.
35:47
But what do you do about that? So it's about aiding that to get
35:50
further out. And I've got a fantastic team of
35:53
really great friends from different backgrounds, genders
35:57
come from all over the world that now live in Wales.
36:00
And it's about, you know, using our experiences, but then
36:04
connecting with our own communities and our own people
36:08
so that people have those conversations and that they have
36:11
the products that they need. And and you know, from a hygiene
36:15
perspective as well, I know people don't like putting two
36:17
and two together, but actually it's really important that we do
36:20
have everything we need to look after ourselves.
36:23
If it was a toothbrush and toothpaste, no one would
36:25
question it. So it's about going that further
36:28
and going right that that is really, really important to keep
36:31
people healthy. And that matters too.
36:34
So they are very different because one looks at very, very
36:37
unwell people, unfortunately, and the other looks at, you
36:41
know, people that maybe haven't been to their GP in 10 years.
36:44
I always say that I really don't like those tag people when they
36:47
turn around to say that I'm like, lucky you, you can go to
36:50
mine for me next time. So it's, you know, I do have, I
36:54
do have a lot going on, but it's taken me so many places.
36:57
And I know you mentioned at the beginning how guests say that,
36:59
you know, it's because of me that I've managed to do what I
37:02
do. And I do recognise that I'm
37:04
being able to do these things is, is really privileged and I
37:09
have this platform I'm really glad for.
37:10
But I worked so hard for it. I wasn't talking, I was really
37:14
unwell. Like I was relying on my sister
37:16
for everything, wouldn't have a conversation with every anyone.
37:19
I'd lost trust in anything and everyone.
37:22
I didn't have qualifications. Everything was so hard, hard to
37:26
build up. And I continue to do that.
37:28
And you know, I hear a lot of people say to me all the time
37:32
like, oh, you know, you always get the opportunity and you're
37:34
always in the room. Because I force myself in those
37:37
rooms because someone needs to be in there to ensure that these
37:41
conversations are happening. Even in the rooms that aren't
37:43
trendy, in the rooms that kind of like the news aren't going to
37:47
be there. You need to be there to listen
37:49
and you need to be there to take that on board.
37:51
So that's my favourite thing to do is be at these events and
37:54
when charities invite me and make sure that I'm listening to
37:57
as many people as possible and I'm there and I'm taking it on
38:00
board because we all have to learn.
38:01
None of us are perfect in activism.
38:03
It's so important to be open to reevaluate yourself on a daily
38:09
basis because the world changes so quickly and stuff that I did
38:13
five years ago, which was awesome, wouldn't hold up now.
38:16
So it's really important to be open to that and to unlearn a
38:20
lot of what we have or what we thought and relearn and be
38:24
willing to do that as much as possible in a unique
38:26
perspective. So I'm really passionate about
38:29
that and I feel like that's something I'm going to go down
38:31
next is kind of like what activism looks like and what
38:34
youth activism looks like. Because I've sat on many youth
38:37
boards and my favourite 1 is with the health board Cardiff in
38:40
the Vale. And that one is, is incredible.
38:43
And because for me, that's gold standard are the ones I've been
38:46
on where I've been treated really, really badly or
38:49
exploited and only seen afterwards how horrible that was
38:52
and what an impact that had on my health as well.
38:56
Kind of going, right? How can we safeguard as many
38:58
young people as possible so that they aren't silenced in a way of
39:01
kind of like going, no, you can't talk about those things
39:04
because they're not appropriate. AKA me telling everyone about my
39:07
bowels. But then also, I'm 23 and that's
39:10
why I do that now. When I was 19, I would not have
39:13
done that. I wouldn't have thought it was,
39:15
you know, I never ever would have trained.
39:16
If you told me, then I'd be like, oh gosh, what is she
39:19
doing? Someone shut her up.
39:20
But then also make sure that they are safe in doing that and
39:23
that people aren't maybe, well, exactly that exploiting,
39:27
bullying. And unfortunately some of these
39:28
behaviours do go as far as that they can have that label.
39:32
That's incredible. I'm honestly lots of words.
39:35
The amount of work that you've done and you're only 23.
39:39
Yeah, that's incredible. And to see how far you've come
39:43
from just feeling the lowest of the low and not being able to
39:47
take care of yourself, coming all the way from there.
39:51
You know, they always say, don't forget where you came from.
39:54
And you are just a product of that happening and proving that
39:59
life does get better even when you're at your lowest point and
40:02
you really don't think that you'll be able to come out of
40:04
it. You are just a perfect example
40:08
that you really can and that you can stand up for yourself and
40:11
you can make change and you can share your experiences for the
40:15
better. Like you said, set boundaries.
40:17
That's really important. But the work that you've done
40:20
and we'll continue to do is just absolutely incredible.
40:23
So thank you so much. And we have to talk about your
40:26
own podcast as well, which you started it within the last year.
40:30
I want to say yes. Tell me about that.
40:32
So it's last in January. Try Trayfide, the gliobabes.
40:35
So myself and my friend Mel, who was also a young ambassador, on
40:39
the Monday, we were like Start podcast.
40:42
I don't know where it came from. By the Wednesday we opened an
40:46
Instagram page and by the Friday our first episode was out.
40:49
What a mass a week, I know, but it's reached thousands of people
40:55
in countries across the world. We had no marketing, no
40:58
strategy. I didn't know what I was doing
41:00
and I don't know how it actually happened.
41:02
But we both, both are tumours come under glioma.
41:06
Mel lives in Liverpool, so England, Wales.
41:08
Mel had a craniotomy, so that's brain surgery for people that
41:13
aren't aware and my tumour is seen as inoperable.
41:16
So we've got those perspectives as well, Mel.
41:18
Mel was diagnosed as an adult, I was diagnosed as a child and
41:22
I've had medical treatment, Mel hasn't.
41:24
So we've got quite a weird kind of like perspective between US.
41:28
And then we bring on guests we've had on like we got the CEO
41:33
of the Brain Tumour Charity, who is the busiest woman ever.
41:37
And we just really, really try and ask those questions that
41:43
people want to know, but maybe we haven't really had the
41:46
answers to. Or there's a bit of red tape.
41:48
So they can't talk about this or they can't talk about that or
41:51
they're just so difficult to answer.
41:53
So it was about doing that. But the the podcast, yeah, it's,
41:57
it's so lovely as we're filming this, we're and we've got five
42:01
seasons, might be 6 by the time. And we're looking at bringing on
42:07
professionals next. So we'd like we've got a GPA
42:10
psychologist, a sex therapist. Wow.
42:14
What else? We're an oncologist.
42:16
We've got an oncologist coming on who is a cancer doctor for
42:19
people that don't know, I'm a neurologist.
42:21
So someone that works with brains and the central nervous
42:24
system and yeah, so actually we're getting everything and
42:29
everyone and people that have lost children or lost parents or
42:33
siblings, we've made sure we're covering as much as possible
42:37
cultural perspectives where maybe so epilepsy can be caused
42:40
by a brain tumour, but in many languages there isn't actually a
42:43
direct translation for epilepsy. And it's, you know, it's seen
42:47
kind of like, as a curse or like you've done something wrong.
42:50
And having those conversations and educating and I guess
42:53
educating us essentially, it's really important.
42:56
So yeah, I absolutely love the podcast.
42:58
You can stream it everywhere. We've put it absolutely
43:02
everywhere. And we're really trying to
43:04
branch it out. So like, we went to the
43:05
University of Cambridge and we interviewed Dr Jessica Taylor,
43:11
who is now a cancer researcher, however spent her 20s working in
43:18
a pub. So like, everything looked very
43:21
different. She doesn't have any A levels.
43:22
So his story was incredible because it shows young people
43:26
that just because something big has happened, it doesn't mean
43:30
that you can't change your direction.
43:32
It doesn't mean that you can't go back to something you were
43:36
really passionate about if you want to do that.
43:38
It doesn't mean that everything is over forever.
43:41
And she embodies that really well.
43:42
So, you know, I've been able to see the research and be involved
43:46
and bridge the gap between the medical professionals and the
43:49
scientists and everything and the patients because it's like
43:51
this us and them narrative. We want to bring it back down.
43:54
Remind people that scientists, just because they're in the labs
43:57
and doing all this big research, that they are human, but also
44:00
remind people that when they're diagnosed, they're human too.
44:03
So the whole point the podcast is to bring those together and
44:05
tell some crazy stories along the way about being two women in
44:08
their 20s finding themselves, you know, Mel, with a skull open
44:13
and then having to be bathed afterwards of what that was
44:16
like. And me, like, not being able to
44:18
get to the toilet on time. Like these conversations that we
44:21
don't have because you don't expect them to happen to you
44:24
and, you know, making sure we, I guess validate, I don't want to
44:28
say, but it is kind of that and it, you know, it's helped us
44:31
having those conversations. So putting that out there.
44:34
Yeah, I mean your. Stories are completely valid and
44:37
they they deserve to be heard. And that's one thing I love
44:40
about my podcast, like you said, is to just be educated ourselves
44:44
as hosts, you know, by bringing on these incredible people with
44:47
different life perspectives that you just wouldn't have even
44:52
known about otherwise. And so I think it's really
44:55
important the work that you guys are doing.
44:57
And yeah, it's been an absolute pleasure to have you on the
45:00
podcast today. I want to finish this episode by
45:04
asking a question that I ask all my interviewees and something I
45:09
will really benefit from hearing from you, I think.
45:11
But what is a piece of advice that you would give to someone
45:15
that's struggling or your younger self?
45:17
Stop. I think I need to hear it now.
45:20
I actually had a firm word with myself a few nights ago about
45:23
this. You can stop for a few days.
45:25
You can take a breath, and actually it would probably do
45:28
you better in the long run. You really, really need to take
45:31
a moment, ground yourself, work on that nervous system, which
45:35
I've been reading all about, and actually breathe.
45:38
And not just like breathing every day, like humans too, but
45:41
really, really work on that because that timeout is so
45:45
important. And the clouds aren't going to
45:48
collapse out the sky the moment you take that, that time to
45:51
breathe. And it can make all the
45:53
difference. Be that a few days, a few weeks,
45:56
a few months for some people. If you need that, do it and it's
46:00
OK. Like sometimes you really,
46:03
really have to give yourself permission to do that no matter
46:05
what everyone else says around you, because you can't do things
46:08
for anyone else if you're not OK.
46:10
Wow, I was. Right, I really did need to hear
46:12
that. Me too.
46:14
I'm. Literally, I'm just known for
46:17
just not stopping, which isn't good, you know?
46:21
I love to be busy, I love to socialise and I love to have
46:23
plans. But when I'm sacrificing my own
46:27
peace and my own kind of health for that, that's where I know I
46:31
need to stop. So thank you for that reminder.
46:34
I'm sure a lot of us listening will need to take that on board.
46:38
So thank you. Thank you so much, Molly, for
46:41
coming on the podcast. It's been a long time coming and
46:44
I've really enjoyed just hearing your story and it's just give me
46:48
a bit of hope in the world. Thank you.
46:51
That's. Very kind hopefully yeah even if
46:53
it's just impacting one person or helping one person not go
46:57
through the same thing. We can't prevent people getting
47:01
I'll we can't prevent a lot of disabilities.
47:03
However, we can make sure that people have all the knowledge
47:06
that they can and and kind of like that thing of it's OK like
47:11
it's OK to speak up it's OK to advocate for yourself.
47:14
It's OK if you need someone to advocate for you and kind of be
47:17
there and, and that's, that's just really important and I
47:20
needed that so much. So if I can give that to anyone,
47:22
then I absolutely will. It just makes a world of a
47:24
difference when you know you're not alone in your.
47:26
Experiences and if someone else is raising their voice then you
47:30
know you come too. Where can we find you on social
47:33
media to follow your journey on Instagram?
47:36
I'm at Moll. Fenton because someone took
47:38
Molly, so it's just MOLLFENTON and I'm on LinkedIn Molly Fenton
47:43
BCA H. I think they're the ones that I
47:47
use most and then you can also follow the gliobabes on TikTok
47:51
and Instagram at the gliobabes and love your period same apps
47:54
love your period across socials. So yeah if you still follow
47:58
along for some crazy social media, please I will link them
48:03
all below as well. I'll.
48:05
Put all the apps in just to double check that the spelling's
48:08
correct. But yeah, thank you so much.
48:10
Thank you guys for listening to the podcast.
48:13
Thank you to the Folk Group for sponsoring this episode.
48:16
Thank you to Cure LGMD 2 I for sponsoring this podcast.
48:20
I really appreciate you guys. Thank you for joining us back in
48:23
Radio platform. It's been an absolute pleasure.
48:25
Thank you to Radio Platform for giving us this space to talk
48:28
about important things and to raise awareness.
48:31
And I will speak to you guys very soon.
48:33
Bye bye.