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Sam Franklin’s Powerful Perspective | The Eye Believe Podcast · The Eye Believe Podcast

0:03
hey everybody
0:03
welcome back to the Eye Believe Podcast
0:05
today I'm joined with Sam Franklin
0:08
all the way across the pond
0:09
so to speak um
0:10
he's hailing from I I believe you're in London
0:13
yeah just outside London yep
0:15
okay um
0:16
so lucky him it's not quite as early as it is over here
0:20
but um
0:22
Sam we're so excited to have you on the podcast today
0:24
and I'm so grateful to you for reaching out
0:26
and just being willing to be a guest um
0:28
and tell us your story about
0:29
you know where you have uh
0:31
traveled within your uveal melanoma diagnosis
0:34
um so Sam
0:35
do you wanna go ahead and just
0:36
just give us kind of the
0:37
the rundown from the beginning to where you are now
0:40
yeah thank you for having me
0:41
um so I was diagnosed actually
0:44
all the way back in 2,011
0:46
um the doctors thought I had a detached retina
0:50
and they said hey
0:50
go home keep your head really still
0:52
and hopefully we'll save your vision
0:53
so my mum wasn't having any of that
0:55
and she whizzed me down to another doctor who said
0:58
you do have a detached retina
1:00
but actually it's cancer
1:02
and it was so rare back then
1:04
that they brought lots of other doctors in to show
1:07
to show them what it looked like
1:09
so I started this whole cancer journey as a sort of
1:11
teaching subject for people
1:14
but they removed my eye fairly quickly back in 2,011
1:17
I thought I was done with all of this until sadly
1:20
the disease metastasized first in 2019
1:24
and then since then
1:25
I've been battling it with various different treatments
1:29
and surgeries and different options
1:31
and up until recently
1:33
I was taking part in a clinical trial
1:35
although sadly
1:36
that clinical trial hasn't worked
1:38
I think now we're at a stage where we've
1:40
unfortunately exhausted all of the treatment options
1:43
and so I'm
1:45
really focusing on spending the time with the family
1:48
uh now
1:48
but we've yeah
1:49
we've given it a good go and
1:51
interesting to share some of those things
1:53
of how the last so 15 years or so have been
1:57
yeah and I think it's so unique um
2:00
I didn't realize how long ago you were initially diagnosed
2:03
so I know when we initially
2:05
talked on Instagram we had talked about having you chat about this
2:08
concept of living in the long middle
2:10
that space in our stage 4 diagnosis where
2:14
you're not cured right
2:16
we know that
2:16
I think you mentioned something about your wife
2:19
and getting the initial metastatic diagnosis of them
2:21
telling you like
2:23
it just it's not curable
2:24
and you're like Gee thanks
2:25
like no duh
2:27
um but
2:29
how has that kind of space
2:30
that you've lived in over the last
2:32
I mean I'm trying to do the math
2:33
15 years since you were initially diagnosed
2:37
how's that space of like
2:38
living in that middle space
2:40
um cause even when you didn't have metastatic disease I
2:44
I assume you still had scans
2:46
and it was still on your mind
2:48
yes and so when I
2:49
when I was first diagnosed um
2:52
they removed my eye they said well
2:54
the chance of it coming back is small or
2:58
and whether they
2:59
whether I remember that correctly or not
3:00
I'm not sure but then they said
3:02
if after five years if it hasn't come back
3:04
yeah chance of it coming back is really small
3:07
a mind spread after eight years
3:09
and so in that first period of time
3:12
I started I was living really
3:13
three months to three months in the scans
3:16
and then when it moved to six monthly scans like hey
3:19
you know I've got a bit of a bigger window here
3:22
and I think it in a way
3:25
that that long window before the disease metastasized
3:29
gave me some sort of coping strategy
3:33
of how it's been after that because
3:36
you know
3:36
I was living scan to scan and not looking too far ahead
3:41
but each one was good was a good scan unfortunately
3:43
so you get a little bit more relaxed
3:45
so by the time it came to the metastatic diagnosis
3:48
and as you mentioned
3:50
my wife was heavily pregnant with my
3:52
with our daughter and the doctor said to us
3:55
spread and the disease is incurable
3:58
whilst that's true it's not
3:59
not what an expectant mother and father
4:03
expecting their first child
4:04
want to hear
4:05
I I certainly felt that hey
4:10
it was a shock but also
4:12
I didn't realize then
4:14
I guess that I'd still be here nearly seven years later
4:21
uh because the doctor painted such a bleak picture
4:26
well I think it's
4:28
it's one of those unique things where
4:31
you know seven years ago
4:32
if you went on the internet and searched
4:36
you know
4:36
prognosis for a metastatic uveal melanoma patient
4:39
it did look a lot more grim
4:42
absolutely
4:43
maybe because of the rise of the internet
4:45
maybe because you know
4:46
of a combination of that and um
4:49
like we're just connecting more with each other
4:51
so we're finding more people across the world
4:52
with uveal melanoma but I think
4:54
you know the other key part of that
4:56
is that treatments have advanced
4:57
and we do have trials that continue to
5:00
you know prolong life
5:01
and we have treatments now like
5:03
that are um
5:04
more approved treatments like
5:05
I think in the UK there's also Kimmtrak and
5:08
the chemosat um
5:11
which obviously like
5:11
is unique circumstances where that will fit
5:14
as far as the treatment scope goes um
5:16
but but the fact that we have more options sort of
5:20
I say I say that with
5:22
with a grain of salt um
5:24
then we did seven eight years ago
5:25
it does shape the picture that we
5:28
that we see more patients experiencing and
5:30
and I I find a lot of hope in that
5:31
personally being kind of
5:33
smack dab in the middle of that timeline myself
5:35
I'm at man
5:37
what am I at
5:38
four years I think
5:41
I can't even do the math yeah
5:43
four years metastatic this month
5:45
I'm like ugh
5:45
I don't know um
5:47
but but I'm like six years from my primary diagnosis
5:50
and like to me that feels insane
5:52
that feels like a really long time
5:54
like that's my
5:54
that's my whole child's life
5:56
my 6 year old
5:58
I just find it incredible
6:01
so I didn't mean to cut you off there but yeah no
6:03
absolutely and when we met with the uh
6:05
with my oncologist just recently
6:08
for the sort of final appointment
6:10
it's very strange
6:11
essentially an appointment for him to say bye
6:13
cause we'd already had a zoom and yeah
6:15
the news hadn't changed um
6:18
we we reflected on the fact
6:20
he's a different oncologist than we had
6:22
for the initial metastatic diagnosis
6:25
but we reflected on the fact that five years ago
6:27
six years ago
6:28
most of the treatments that I've had weren't available
6:31
or weren't readily available then
6:34
um and
6:35
and the trial I've just taken part of
6:36
no one had ever even thought of five years ago
6:39
and whilst he didn't say
6:41
we will have cured this in five years
6:43
the sort of reflection from him was
6:45
in five years it'll be a different picture again
6:48
I'm you know
6:49
sadly
6:50
many of us as patients just fall at the wrong time
6:53
and this this
6:54
the way this disease behaves five years down the line
6:58
may or may not be be too far away
7:00
um but it was
7:02
it was when when I agreed to
7:04
to do this podcast and talking about the long middle
7:07
it was really to to share some of those reflections
7:09
on how those five or six years have have been
7:13
yeah so in the five or six years like
7:16
where you have been metastatic and just
7:19
I mean I don't know about you
7:20
but I kind of
7:21
I kind of feel like I get to that year mark
7:23
of where I'm at in the metastatic journey
7:25
and I'm like wow
7:26
another year like
7:27
it's already been a year um
7:29
sometimes it feels like that year is horrible and hard
7:31
and other times it feels like it goes so fast
7:33
that I feel like I just blinked
7:35
um
7:36
when you have been in that space
7:38
like did you ever find
7:39
I guess kind of a tension between like
7:41
feeling grateful for your own response
7:43
or your own kind of disease
7:45
um what do you call it
7:46
behavior maybe
7:47
like the way that your cancer behaved
7:49
and like the weight of knowing
7:50
that there were other people in the community
7:52
you know who don't have the same outcome
7:56
uh yeah absolutely
7:58
um
7:59
so I had a chemo saturation therapy
8:02
Delcath
8:03
um in
8:04
in Southampton which is one of the leading centres
8:07
and well treated by the team down there
8:10
and and whilst I was there
8:12
other Omies were being treated down there as well
8:17
and sadly
8:19
I'm at least two of them
8:21
but two that that I got to know through social media
8:24
and through being there at the same time
8:26
passed away they're no longer with us
8:28
and I I did feel a huge burden of survivor guilt
8:35
you know why
8:35
why should my treatment be successful and
8:39
and there's isn't um
8:43
and whilst there's been other people in that
8:46
you know along the way through
8:49
through Instagram and and through social media
8:52
because I'd seen them in person
8:54
you know that
8:55
that took them from just being a name on a
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on Instagram
8:58
or someone that we'd shared a few voice notes with who
9:01
yeah someone
9:02
we both shared a complaint about
9:04
the quality of coffee in the hospital
9:06
yeah and
9:07
and then to see the message that
9:11
that each of them had passed away far beyond their
9:14
their time far before their time
9:16
right far too young
9:18
uh was
9:19
was really hard I found that very difficult
9:22
and just last week um
9:24
another patient from the trial
9:26
so two weeks ago
9:27
a patient from the trial uh
9:28
passed away as well
9:30
and although I'm in the same place as her
9:34
the trial hasn't worked I've run out of options
9:37
I found it incomprehensible that she could be dead
9:42
because I'm still alive and so both the guilt bit
9:46
but also the complete mental struggle with that uh
9:52
of how can I still be alive but
9:57
but she's not so it's it's
10:00
I think that's one of the most
10:02
that what we've got a beautiful community
10:04
where I've learnt about treatments
10:06
before the doctors have even offered them up
10:08
from people on Instagram and Facebook
10:11
and this community of people that share knowledge
10:14
but then you get to know the people when
10:16
and sadly no one's in that community for fun
10:22
yeah absolutely
10:23
well Sam
10:24
thank you so much for sharing that um
10:26
I can relate a lot um
10:28
the people that I've met in person
10:29
I definitely have have felt a much stronger link um
10:33
just a a bigger a bigger connection
10:36
um so in the last
10:38
you know five
10:39
six years
10:39
that you've dealt with your metastatic diagnosis um
10:42
you've got two little kids
10:44
you said that your first was um
10:46
almost you know
10:47
almost to their original birthday
10:49
when you were initially diagnosed metastatic
10:52
um
10:53
where where do you feel like you were able to kind of
10:56
find space for life to be as normal as possible
10:59
you know as a young family
11:02
I think
11:02
because of that sort of regular three month scan thing
11:06
I've
11:10
so so people have said to me recently
11:13
oh you're so strong or you deal with this so well
11:16
I don't know how to deal with it
11:17
and I don't feel that I'm strong
11:18
or particularly dealing with it well
11:20
I think I've developed this helpful
11:23
or unhelpful coping mechanism of
11:27
I take the cancer and I put it in a box
11:29
and it goes up on the shelf
11:31
and that box gets opened periodically
11:33
at appointments or scans
11:35
or once a week at my therapy appointment
11:38
but then the rest of the time it goes back in the box
11:41
up on the scan up on the shelf
11:43
and that's how I've been able to work up yeah
11:46
all the way up until recently
11:48
I've worked all the way through the cancer stuff and
11:51
and yeah
11:53
my work identity hasn't been about cancer
11:56
now some of my colleagues might disagree about that
11:58
because I one of my coping mechanisms
12:01
is making inappropriate jokes
12:03
and so I have made jokes about it
12:05
to try and get out of
12:06
doing things I don't want to do at work but
12:09
but in reality I've worked regardless of of the cancer
12:14
I'll come back to the kids and the family
12:16
cause that's the most important in a minute
12:17
but I've done other things
12:18
I took a voluntary role at the
12:21
at the local synagogue
12:23
where I was the chair for a couple of years
12:24
and did other stuff in the community before that
12:27
and we had a project to try and open a new school
12:30
and I've done all of that
12:32
not in not because of the cancer but
12:35
and not even in spite of the cancer
12:37
for me the cancer was something that lived over there
12:40
and I'd have to deal with it every so often
12:42
but maybe'cause it's just too much
12:45
but I left that over there
12:46
and then having young children
12:49
you know so my daughter Ariella is six
12:52
my son is four it's nearly his fifth birthday
12:54
we're super excited about that
12:56
and I'm looking at
12:58
looking forward to all the celebrations
12:59
but having those two is just a
13:02
a humongous distraction as well because yeah
13:06
kids just still wanna play and still have fun
13:09
so
13:10
focusing on them has been one of the huge things that
13:14
sort of gets you up
13:15
each day gets me up each day and gets me through
13:18
and then I have an incredibly supportive wife who
13:21
you know whilst I've been putting it up on the shelf
13:24
and living in in the long middle
13:27
there's probably a whole other podcasting series
13:29
about the grieving spouses
13:32
who have to go through this period of
13:33
of long grief because whilst I'm focusing on living
13:39
they're coming to terms with the fact
13:40
that we're actually dying
13:43
man
13:46
I think you mentioned you went to therapy today
13:48
I I can tell
13:49
haha
13:50
I too make inappropriate jokes
13:51
the
13:53
yes and I
13:54
and having the therapy before this
13:57
having a therapy before this was good
13:58
cause
13:58
it then helped me to crystallize what I wanted to ha uh
14:02
say today but
14:05
yes
14:06
well and I
14:06
I just I mean
14:08
I know
14:09
I know I get told
14:10
you know many cancer patients
14:11
we get told that phrase of like oh
14:13
you're so strong right
14:14
from people outside looking in
14:16
and as cancer patients I think it
14:20
it feels a little bit more like
14:21
we just don't have any other choice right
14:23
that's that's
14:24
it's it's show up or
14:25
or not like that
14:26
those are the options like
14:28
it's not so much about strength um
14:31
sometimes at least
14:32
I think that we kind of talk ourselves out of that but
14:34
but I do want to just um
14:36
I guess applaud you maybe not for strength
14:39
but just for your resilience
14:40
like as a person and um
14:43
I can see that in the way
14:44
that you talk about your diagnosis
14:46
in the way that you talk about
14:47
you know where you're at now with reaching
14:50
reaching the end um
14:51
of treatment options
14:52
and reaching this point where presence and um
14:57
you know the
14:58
one day at a time
14:59
is literally all you have to focus on
15:02
um I just
15:03
I absolutely admire the the person that you are
15:07
thank you no I
15:09
I really appreciate that and
15:12
you know I've
15:13
I touched it there but I've taken the decision and yeah
15:16
there's lots of others who
15:18
it's not my phrase really
15:20
but yeah
15:21
I've taken this decision to focus on living
15:24
um
15:25
can't remember if I said it here
15:27
but yeah
15:28
I know I'm dying but I'm not dead
15:32
and until I'm dead I'm gonna keep focusing on
15:36
on living and I think that's why I'm not particularly
15:41
I've never been dead before
15:42
so I don't know what it'll feel like
15:45
but I but I'm not particularly
15:48
I'm not particularly scared of it
15:50
because
15:50
it feels like it's something that's gonna happen
15:52
at some point you know
15:53
and I'm not gonna have much control of it
15:55
but ultimately we are all dying
15:58
at some point some coming sooner than others
16:00
but until then you know
16:01
I plan to just keep getting up each day and
16:06
and enjoying the day
16:07
and I never wanted to have cancer with young kids
16:12
of course not
16:13
and I'm not saying there's a good way of having it
16:15
or a bad way of having it
16:16
but
16:17
the young kids still need you to get up in the morning
16:20
and yeah
16:21
they still want to come and jump on the bed or what
16:24
whatever they want to do and so whilst they've
16:28
they've been complete angels and
16:30
and adjusted to the last three months
16:33
where I was really poorly on the trial
16:35
they
16:37
they still force you more
16:40
even just mentally to get out of bed for a little bit
16:42
and read them a story
16:44
or do some Lego with them or things like that and
16:46
and I think that that helps with the
16:50
the strength cause I'm
16:52
maybe I'm not being strong for me
16:54
I'm being I'm sort of dragging myself forward to
16:58
to be there for them
16:59
and I think that's what's helped a lot over the last
17:03
over the last six years
17:06
I was actually just about to ask you like
17:08
where do you feel like you draw strength from the most
17:11
um and it sounds like family and
17:12
you know your kids and your wife is a big piece of that
17:15
um but I guess my other part to that question is
17:17
you mentioned a synagogue
17:18
like do you have any level of like
17:20
spiritual or religious beliefs that you feel like
17:22
you've been able to lean on
17:23
um I think at
17:26
at different times yes
17:30
uh today I
17:32
I don't know um
17:35
and I don't mean that today as in
17:37
in this long period I mean today as in the May 8th
17:42
yeah because it
17:43
it does feel like it it wanes
17:46
you know um
17:48
my initial my initial diagnosis came uh
17:53
just before the Jewish New Year
17:56
and in the text that we study on
17:57
that we read on the Jewish New Year
17:59
and on the day of atonement
18:01
it says that god will decide who will live
18:02
and who will die and that really resonated with me
18:07
because I was about to have a major operation
18:09
to have my my eye removed
18:11
in fact I delayed the operation
18:12
to just after the day of atonement
18:14
cause
18:14
I felt like I needed to give it everything I could
18:18
and because of the scan cycles being
18:20
three months or six months
18:21
the metastatic diagnosis landed similar timing in 2019
18:28
so that has always felt a real pinch point for me
18:33
the last two years um
18:37
you're going to the synagogue around that time
18:38
I found it extremely difficult
18:41
I found very much like yeah
18:44
yeah if a god exists
18:45
I felt like I was yeah
18:48
there begging for for a different answer or for a yeah
18:53
for a positive answer
18:56
um
18:57
but then I look at
19:01
but I look at my kids and I
19:04
I think actually
19:06
they're great and
19:09
you know if
19:09
if it's been decided
19:10
that I've used up my time down here
19:13
that really sucks but yeah
19:16
we've given them a strong foundation
19:18
and every parent says their kids are awesome right
19:22
but mine are awesome
19:24
and yeah
19:25
I think we've given them a strong foundation
19:28
for moving forward
19:30
um I think it's
19:31
it's one of those tricky spots
19:33
I think throughout diagnosis where
19:34
you know I
19:35
I watch some people online in the community
19:38
people I know in person who
19:39
they lean heavily right heavily on a
19:42
a level of like
19:43
spiritual belief and they find a lot of comfort in that
19:47
but I think that there's also a
19:48
very a very real percentage of the community who
19:52
who feel a lot like you Sam
19:54
like who feel like okay
19:56
I had this belief system and then I got cancer
19:59
now I'm trying to make sense of
20:01
how do those fit together
20:02
and do they even fit together
20:04
and I I appreciate the
20:05
the candor that you shared that
20:07
like some days it doesn't
20:09
like today is the day that you're not so sure
20:11
um and I think that
20:13
I think that that is really
20:17
just really validating
20:18
to so many of us in the community
20:20
who struggle to make sense of
20:22
you know why does it feel like
20:23
this person's prayers are getting answered
20:26
when mine are not I think that
20:28
that what you said gives it just gives a lot of um
20:33
room for the empathy of of that space
20:36
I and I think I've sort of landed in that position
20:39
because
20:42
um I've been having to have some
20:43
really tough conversations
20:44
with both kids
20:46
so both kids are to their own level but
20:49
but aware of where we are in my
20:51
my diagnosis and both have asked
20:54
has the medicine stopped working
20:57
or is the medicine working
20:58
we've told them it's stopped working and
21:00
and so
21:02
they've come to understand that that means I'm dying
21:07
uh and that means different things to both of them
21:11
but that obviously leads to lots of other questions
21:14
and lots of questions around faith
21:16
so I
21:17
yeah having to yesterday
21:20
sit and talk to your four year old about this
21:24
and then today
21:27
right the first half of the stack of birthday cards
21:30
for my daughter
21:31
for birthdays that I won't be there for
21:34
uh
21:35
yeah I'm not feeling as close to faith and god as yeah
21:40
maybe I was yesterday morning
21:43
when my son had a beautiful assembly at school
21:47
you know I saw him on the stage
21:48
and he was joining in with all of the prayers
21:51
and all of the kids were and it was
21:53
you know it was lovely
21:54
and
21:56
you know that felt a bit more spiritual than yeah
22:01
organise prayer yeah
22:03
perhaps does or
22:04
or things like that but
22:06
I think everyone's got their own space in that journey
22:08
as well
22:10
yeah I absolutely appreciate your thoughts
22:12
um
22:14
sorry I'm just the waterworks here
22:16
just for everyone else on the podcast
22:18
based on time difference
22:19
I've already used up a box and a half of tissues today
22:22
so yeah
22:24
Danet's got some catching up to
22:26
and here's me with um
22:28
you know three pieces of tissue over here
22:30
trying to make it last haha
22:33
so Sam I appreciate just the
22:37
I don't know if you feel do you feel
22:41
let me rephrase that
22:43
I feel like if I try to put myself in your shoes
22:47
which is obviously a a pretty challenging painful
22:51
triggering kind of a thing to do um
22:53
as a young parent myself
22:55
um who's also got metastatic disease
22:58
um do you feel like
23:01
I don't know like
23:02
like you're kind of going a little bit
23:05
I just feel like I would go a little bit insane
23:07
like trying to
23:08
trying to make sense of where OK
23:10
like today I just did this
23:11
and also like hmm but I'm OK today
23:16
um it's
23:19
it's a very strange feeling because
23:22
over yeah
23:25
well first of all
23:27
um
23:28
I was certain that I was gonna beat this thing
23:33
and
23:35
for I know I only said that out loud recently
23:38
in regard to this after this trial
23:40
but I genuinely believed that the trial that I was on
23:44
was going to be for the drug
23:46
that was going to cure cancer
23:49
I don't know if I psyched myself up for that or
23:51
I don't know if I was delusional
23:53
because I tried so many other things
23:56
but if someone had to be the first patient
23:59
to have chemotherapy or radiotherapy
24:02
or Kimmtrak or any of those things
24:03
so I was like hey
24:04
why can't I be one of the first patients
24:06
to have the next breakthrough thing
24:08
that was going to solve the yeah cure the disease
24:12
and so there was a little bit of shock of that
24:16
but the yeah
24:18
the doctor says to me hey
24:19
we've run out we've run out of all options
24:21
and you've been pretty sick on the trial
24:23
for the last three months
24:24
yeah you
24:25
our advice is use the time you've got to make memories
24:29
but
24:32
I feel tired
24:34
I'm a I'm a bit sad that my beard hasn't grown back
24:37
but yeah
24:39
I never had a lot of head hair to start with
24:41
other than that I was at the gym
24:44
this morning we're going away on Monday with the kids
24:47
yeah it feels really strange that I'm yeah
24:52
that I'm dying
24:55
but I don't really feel like that
25:00
and I don't know if
25:00
I expected that as soon as they told me
25:03
I'd feel really ill
25:05
but my brain can't quite catch up with the
25:08
hey you're dying
25:10
and so whilst I'm trying to do all the
25:13
what I'm calling Deadmen
25:15
is sort of the admin of dying
25:18
and changing the bills over into my
25:21
my wife's name or sorting out the
25:24
she's put on the list
25:24
that I need to tidy up the loft space
25:27
you know there's a lot of stuff I've got to do on
25:29
on this list
25:30
I can't really get psyched to do it because it doesn't
25:34
well I've got ages right
25:35
because I'm still here I still feel fine okay
25:38
I feel a bit tired sometimes I feel a bit nauseous
25:40
but overall yeah
25:42
I feel real good
25:44
I think the sad thing is we've seen in the community
25:48
when it gets right to the end
25:49
the very end seems to be quite quick
25:53
you know
25:53
hence me motivating myself to do the cards for the kids
25:56
and and things like that
25:58
which are which are more important
26:00
but it's a real
26:02
it's a real challenging space to not to
26:06
not even to accept I'm dying
26:07
because I've had a long my long middle
26:10
I still think so half thinking I'm
26:12
I'm sort of at the end of the middle
26:14
I'm not in the end yet but I'm at the end
26:15
ha ha um
26:17
you know throughout that process that this is a
26:20
a disease that they don't have a cure for yet
26:24
and so trying to balance those two things
26:27
I think is is one of the big challenges of
26:31
of living with this this horrible disease
26:35
because ultimately you know
26:36
the end is coming you just don't quite know when
26:39
well just to
26:40
to wrap Sam um
26:42
I wanted to give you an opportunity just to share um
26:46
I guess maybe two tidbits
26:47
one what would you say to somebody who's brand new
26:49
diagnosed um
26:50
especially somebody who maybe is
26:52
you know a younger um
26:53
a younger father or you know
26:56
father to be and um
26:58
just in that kind of family space
26:59
what would you say to somebody like you who
27:01
you know it's 2027
27:05
they just found out
27:05
they gotta have their eye enucleated
27:10
um
27:11
I'd I'd split what I'd say to them into two parts
27:14
yeah I
27:17
I haven't not been able to do anything I wanted to do
27:20
because I had my eye removed
27:21
so yeah
27:22
I had this fear of
27:23
how my life was going to change from it
27:25
I still had a flying lesson
27:27
I've still
27:28
and my wife and I backpacked around South America
27:30
we still just got on with
27:32
still scuba dive I've done all of those things that
27:35
yeah I
27:36
I wanted to do beforehand with one eye
27:39
so the the enucleation itself shouldn't
27:42
shouldn't hold you back
27:43
I will never win a tennis tournament
27:46
but
27:46
I was never gonna win a tennis tournament beforehand
27:48
but I reckon if if you were really determined
27:51
and you trained your brain
27:52
you still could
27:54
so one hand would be you know
27:56
your life's not over from having your eye enucleated
28:00
and back in 2,011 there wasn't anyone to
28:03
that said that to me and yeah
28:07
it
28:08
it took a while for
28:09
me to realise that I could pick myself up
28:11
and still drive and still do all
28:14
all of those basic things as well
28:17
and all my friends prefer me to pour alcohol shots
28:20
cause I've got no depth perception
28:21
so you get a bigger drink
28:24
and then the other part of it is
28:27
the doctors are fantastic
28:29
but they only
28:31
they only know what they know
28:34
and the fantastic community that's out there
28:37
enables us to have access to different treatments
28:41
around the world or
28:42
or information about different treatments
28:44
so we've often gone to the doctor and said hey
28:46
what about this and he said
28:48
well you
28:49
that doesn't work because of this
28:51
or yeah
28:52
doing something else might
28:53
might be better for you
28:55
and then the third part of that is
28:58
you can only deal with
28:59
what's immediately in front of you
29:02
so maybe I could yeah
29:04
I couldn't do a particular other treatment
29:06
because I done Delcath
29:09
OK but I didn't know about the other treatment
29:12
and Delcath gave me 18 months
29:14
so you can only deal with what's in front of you
29:17
with the information that you've got
29:19
and there's no point second guessing yourself
29:21
because I think you drive yourself crazy
29:26
yeah absolutely
29:27
well
29:27
I feel like you just went right into the next piece
29:29
of that of like
29:31
what would you say to somebody metastatic no
29:32
it's fine it was
29:33
oh yeah
29:34
okay yeah
29:34
link link
29:35
link the whole together and I think I didn't realize
29:39
I just don't think I realized in 2,011
29:42
to even worry about the metastatic
29:45
and maybe that's because I was
29:48
I know I was 20 something 2 23
29:52
I was it was 23
29:54
I didn't I didn't think about metastatic disease
29:57
and it spread to my liver
29:59
I knew they were gonna remove my eye
30:01
I wasn't gonna get my vision back in it cause it'd
30:04
it'd already gone blurry and that they
30:07
I was gonna have regular scans afterwards
30:10
but I don't think I ever really understood
30:12
or I don't not understood
30:13
I don't think I ever really paused to think
30:15
what does that mean at the time
30:18
and maybe I'd have yeah
30:19
done more research
30:20
and we would have been more armed with what to do
30:23
when it did metastasize although
30:27
I focused on living my life for those eight years
30:29
which maybe
30:30
it's better than spending your time
30:32
searching for different treatment options
30:34
yeah I mean
30:35
I think that the the level of
30:36
just presence and life that you've been able to
30:40
you know muster
30:41
from the point of your initial diagnosis
30:43
to where you are now is incredible
30:46
um it's not it
30:48
it's it's one of those it's
30:49
I feel like it's one of those hard things right where
30:52
yes it's incredible that you made it this far
30:55
and it still absolutely sucks to be where you're at
31:00
both things are true
31:02
and that that dichotomy is such a
31:04
it's such a tricky thing to hold space for
31:06
for yourself for other people
31:07
to hold space for that um
31:10
but I admire just the
31:11
the way that you have lived and lived well
31:14
like while you've been in that long middle um
31:16
even if even if the end came
31:18
you know the end point of that journey
31:21
came sooner than you expected
31:24
thank you no
31:25
and thank you for for everything you do
31:27
to continue to raise awareness and to
31:30
to help people with this
31:32
with this really rubbish disease
31:34
and thank you for the time on the podcast
31:36
and I wish you all the very best
31:38
in all of your treatments and scans
31:41
and everything that you've got coming up as well
31:44
well thank you
31:45
I appreciate that um
31:47
Sam I do have one final question I just thought of
31:49
if you've got like a minute
31:50
I have yeah
31:52
if you've got just a minute um
31:54
where do you hope this disease will be
31:56
you know in 10 years
31:57
15 years like just or
31:59
or just in the future um
32:03
what do you hope for for other patients I guess
32:06
I I think there's fantastic advancements
32:10
in the treatment options
32:12
I saw something really cool recently about
32:14
they've worked on a mouse model
32:16
how the disease progresses that more mirrors it
32:20
the problem with our disease is the branding right
32:23
yeah everyone just thinks we're a form of skin cancer
32:26
so we need to ditch the melanoma tag
32:28
and then people will focus more on the uveal part
32:32
and I think
32:34
I think science is really close to understanding
32:38
you know
32:39
we've seen with Kimmtrak that's doing good things
32:42
um there's a couple of other drugs
32:45
that are just finishing their trials
32:47
that positive results coming out from
32:49
so in five years yeah
32:52
I'd I'd hope for the minimum
32:55
this disease was you know
32:57
something that was manageable
32:58
whether or not you're cured
33:00
but you know
33:01
you could be a long term
33:03
long term drugs that keep it at bay
33:05
um
33:07
and then you know
33:08
as we reach out further to 10 years
33:11
I'd love for it to be
33:13
love for it to be
33:13
like some of the other cancers out there
33:15
where they know what to do and
33:17
you know it's cured
33:19
I think what would be even more incredible
33:21
would be to understand how this forms
33:24
and to work out how to prevent it happening
33:27
to start with
33:29
and one of the things that I've been asked
33:31
I've asked every oncologist we've seen recently
33:34
is how do I know that the kids don't have this
33:38
and and all of their answers have been
33:41
well yeah
33:41
we don't think that it passes on that
33:43
but in five years I hope they answer that
33:45
they know how the disease progresses
33:48
and they know how the disease passes on to people
33:50
or doesn't pass on so that even if you do sadly get it
33:55
they know how to make sure
33:56
that it's not something that gets passed on to
33:59
to children or
33:59
that children are at greater risk
34:02
from their parents having the cancer
34:04
well Sam
34:04
thank you so much for being a guest here
34:06
on the Eye Believe Podcast
34:07
and for just honoring our community with your
34:09
with your story with the wisdom that you have to share
34:11
um and really just taking the time um
34:14
out of out of the
34:15
the days that you have right now to be present um
34:18
and to be present here and to
34:20
I think just
34:21
just offer the gift of of what you had to share
34:24
with the rest of the ocular melanoma community
34:26
um I can't thank you enough for
34:28
for participating
34:29
and just honoring me with being the person to talk to
34:33
thank you it's been an absolute honour and pleasure
34:36
to be part of this to
34:37
to share the story and hopefully
34:39
to help some others along the journey as well
34:42
yeah absolutely
34:44
well in addition to that
34:45
I wanna just say
34:46
thank you so much to our sponsors for the podcast
34:48
and our YouTube channel
34:49
all of whom which we would not be able to
34:50
you know host the podcast without their assistance
34:53
and their help so with that
34:55
I will talk to you guys next time
34:57
um send Sam and his family lots of
34:59
lots of good energy and prayers um
35:01
and peace I think um
35:05
I just know that that as much as we can be with you
35:08
we're with you
35:10
thank you I really appreciate that
35:13
god bless to you all