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When The Doctor Becomes The Patient | The Eye Believe Podcast · The Eye Believe Podcast

0:03
hey everybody welcome back to the Eye Believe Podcast
0:05
I'm your host Danet Peterson
0:07
and I'm also a fellow patient if you guys didn't know
0:10
and I'm joined today with one of our patients
0:12
from Australia and his name is Ian
0:14
and he's reached out to me a numerous times on Facebook
0:17
just in following my own story
0:19
and he's had some awesome advice and um
0:21
just really been a good source of
0:23
wisdom and relating to each other
0:25
like on that patient level but I'm so grateful
0:28
Ian that you were willing to be a guest
0:29
for our miniseries living in the Long Middle
0:31
so thanks for joining us today
0:34
oh look thanks very much for having me
0:36
for those of you guys listening if you are hearing
0:39
um parts of Ian's story and you kind of see yourself
0:42
in the story
0:43
please feel free you know comment where you're from
0:45
what your diagnosis has been like
0:47
tell us where you're um where you're at in your journey
0:50
and most of all I hope that you know from hearing
0:52
Ian's story you guys can take a lot of hope
0:54
and a lot of encouragement
0:56
from just the idea that you know a future absolutely
0:59
does and can exist for ocular melanoma patients
1:02
um so Ian you were diagnosed roughly how long
1:06
ago I know it's been more than 10 years but I want to make sure I'm getting the number right
1:09
oh let's see 2012 I think it would have been so that's
1:13
14 years ago from now okay so yeah so I mean that was
1:17
that's pretty far in the past
1:20
yeah and and one can still go well
1:24
over that sort of amount of time
1:27
well
1:28
let's talk I mean you're from Australia so I mean we know from
1:31
statistics that I think Australia
1:33
and the United States and like maybe Europe
1:37
are some of the top like well North America
1:40
Australia and Europe are like the top areas
1:42
of the world where we see ocular melanoma cases
1:45
um but can you just walk us through 14
1:47
you know or so years ago what do you
1:49
remember about this season of life that you were in um
1:52
and kind of tell us the the version of your story
1:55
where it all where it all began
1:57
well I I think the most
1:59
important thing from from my perspective
2:01
is I am in Australia what you call a GP
2:05
in North America I'd be a family doctor so yeah I'm a
2:10
trained um fellow in general practice over here um so
2:16
I come to this with a
2:17
significant amount of of medical knowledge
2:20
um and you know we get taught about ocular melanoma
2:25
um in mid school and um
2:28
we get taught that it didn't really have a good prognosis
2:31
and that yeah people died from that sort of illness
2:36
um so yeah look it was a pretty
2:38
scary time when I first discovered I had it but
2:42
you know I think back to my first symptoms and I
2:45
remembered clearly walking through a shopping mall
2:48
and looking at a clock and thinking
2:52
she that clock doesn't look right so my vision
2:55
I noticed was was quite distorted out of one eye
2:59
and I thought oh what's going on here and of course my
3:03
my brain goes immediately to
3:07
um I've got macular degeneration you know I pull out a
3:11
uh you know the Amsler grid that that uh crosshatched a
3:16
sort of graph paper that we look at and say
3:18
oh yeah that's horribly distorted
3:20
oh my god I'm going to be losing my vision
3:22
I've got macular degeneration I better
3:25
um you know organise to see an eye specialist
3:29
and of course I uh I live in a in a country town um
3:34
I know all the eye specialists
3:36
personally they all know me so
3:39
ring and make an appointment and
3:40
and get in and see them and um
3:44
and obviously I know them quite well
3:47
and he looks at my eye and
3:50
uh tells me that I've got something called um
3:56
cystic macular retinopathy
3:59
um which is where a fluid uh
4:02
build up exists in front of the macula
4:04
the the central part of the vision
4:07
and I'd I'd never heard of that but
4:11
you know I'm told it's due to stress
4:13
and that was probably also one of the most stressful parts of my life there was a whole lot of
4:17
um
4:18
things going on within my practice and so it was very
4:22
it was a stressful time and it sort of made sense um
4:26
interestingly leaves
4:27
interesting side note uh that that cystic retinopathy
4:32
um is well described as
4:35
one of the symptoms of shell shock
4:37
so it was described uh by veterans of the
4:40
war was described during the Korean War
4:43
when people complained that they couldn't see
4:47
and you know doctors were thinking that oh
4:50
these soldiers are just having us on
4:52
until they actually looked in their eyes and discovered
4:55
that yeah this this fluid
4:56
build up had happened and it distorted their vision
4:59
um so yeah it's supposed to be due to stress and
5:03
it's supposed to go away after six months
5:06
so I was seeing them regularly
5:08
had a few tests and all that sort of stuff and um
5:12
yeah it it sort of didn't go away
5:15
of that sort of amount of time so I then
5:18
got referred to a a visiting retinal specialist who um
5:24
I'd heard of but never met before and he looked
5:28
one look in my eye and said I'm going to arrange for you to see this
5:31
colleague of mine uh down in Sydney
5:35
um and I'm you know five or six hours away from Sydney
5:38
and um I look him up and he's
5:42
um in in some
5:43
field that I'd never heard of of ocular oncology which
5:47
of course was a brand new subject to me that I'd
5:51
never thought of and I thought what on Earth's going on here
5:54
um and yeah look we did discuss that he thought
5:57
he wondered if this was a a melanoma
6:01
that that I've been talking about so I thought yep this
6:04
you know he said he's gonna send him some photos
6:06
I saw the photos as well and saw what he was looking at
6:10
and
6:12
uh it was like yeah I'm I look I'm gonna be in Sydney
6:15
you know it's a couple of weeks away
6:17
and obviously he told the specialist that
6:21
um
6:23
and then uh I was in Sydney and I was doing something
6:27
you know reasonably important
6:31
and um during
6:34
during this this day which I'll describe in a sec um
6:38
you know this fellow that I've never met before
6:40
rings me up and say you know hi my name is Michael
6:43
and yeah look I I need to see you because
6:46
you know you've got ocular melanoma
6:49
and um my thoughts immediately
6:53
go back to my medical school training and
6:57
yeah well I'm gonna die from this
6:59
and you know I was pretty crestfallen
7:03
and I suppose that
7:05
taught me or reminded me of one of the things about medicine
7:08
you know
7:09
really setting the scene if you're delivering bad news
7:12
so Michael and I've we've discussed this
7:15
afterwards about you know what not to do in medicine
7:18
um it didn't actually check what I was doing
7:20
I was actually in Sydney
7:23
unsupported I was actually interviewing
7:28
uh doctors who were about to
7:31
being selected for general practice training
7:35
so it was like I'm doing back to back interviews
7:38
and suddenly I been
7:40
dropped this sort of little bombshell
7:43
and I actually had to take a little bit of time out and
7:47
regather my thoughts and then
7:49
dive back into it because it's all appropriately
7:51
scheduled
7:52
and there's like a whole panel of us there doing this
7:56
uh for a few days
7:57
interviewing you know 100 people or whatever
8:00
um
8:02
ocular melanoma
8:03
in Australia is probably a little bit different to
8:07
America I mean our population is a lot less
8:10
we're like you guys we're divided up into states
8:15
and each state will have at that time um one
8:20
maybe two ocular oncologists
8:22
we don't have the population
8:24
to support more um now I think some states have three
8:29
or four um so
8:31
such is the nature of the specialty and none of them
8:33
do that full time they also
8:35
support themselves with other um other eye work
8:40
um so yeah in Australia because of um
8:44
the natural prevalence of
8:47
cutaneous melanoma which of course is a different illness
8:50
um yeah there's a lot of propensity to sun damage and
8:54
although melanoma um is
8:57
ocular melanoma is not necessarily related to sun
9:00
exposure
9:01
um it is preponderant in white you know Caucasian
9:07
uh people who generally are living in climates
9:10
that they're not necessarily adapted to
9:13
so um yeah us being here you know there's a reasonable
9:18
number I think it's about six per million
9:20
which is roughly the same as North America
9:24
um so the population here is not
9:27
large enough to support um
9:31
ocular oncologist to the volume that exist in the US
9:35
so we don't have a whole lot of choice so I saw the
9:38
one of the two ocular oncologist in Sydney
9:43
who is also a part time magician and does
9:46
a magician shows during the ophthalmology conferences
9:51
um and he's one of the founding fathers of
9:55
ocular melanoma research
9:58
um in the world is internationally respected
10:01
um and look
10:04
he got me in uh he had a look at my eye and said look
10:08
um
10:09
this is a
10:10
a very small tumor you've picked it up really early
10:13
it's central um
10:16
it was only like I think 1.1 millimeter thick
10:19
which really if you think about it is not um
10:25
big enough to actually
10:26
make a formal diagnosis of ocular melanoma needs to be
10:30
thicker
10:31
uh but it had some of the other characteristics
10:33
eg that fluid leak that made me pick it up
10:36
and it also had that wonderful um orange staining that
10:41
that we sometimes see that's sort of a hallmark of
10:45
of a melanoma
10:46
so yeah look it was quite obvious that's what it was
10:50
um and his view
10:52
which might be scary to a whole lot of people
10:54
a whole lot of you out there um
10:56
was well I think we're just watch and wait and let this
11:00
declare itself and the way
11:04
melanomas
11:05
and the way cancers in general declare themselves
11:08
is they grow
11:41
so if you see something small um
11:44
if you see growth in it
11:45
and that that goes for things like Mets as well
11:49
um if you see growth that's obviously not a good sign
11:54
um so I got onto a a cycle of three monthly visits
11:58
and photography and comparing
12:01
and yeah look eventually um
12:04
and the good thing about eyes is they've got these wonderful background
12:08
blood vessels across the
12:10
the fundus of the eye that everyone has seen
12:12
you can see growth against those
12:14
quite easily so there's a whole lot of landmarks you can use
12:17
and it it took about 15 months for
12:20
you know it to declare itself and say hey look it's now
12:24
I think I got up to 1.4 millimeters thick and
12:28
you know it was a little bit larger and we said yeah look we need to
12:31
do something about this
12:34
and the problem with that time um
12:37
and the good thing about being a doctor
12:38
is you have all these chats with
12:40
about what's going on in the world and you talk about the science
12:43
of it all
12:44
and yeah for sure yeah and so we use
12:49
uh generally Ruthenium here
12:51
as a as a plaque agent uh rather than
12:55
uh iodine iodine is available here as
12:58
as a plaque agent but
13:01
uh we tend to follow a UK European model of uh
13:05
brachytherapy or the radiation
13:07
plaques and we use Ruthenium
13:09
uh which essentially rather than and people might have
13:13
people have had this would have
13:14
you you would have seen the little seeds
13:16
that you put in the
13:18
these holders that gets under the back of your eye
13:21
Ruthenium is a little bit different it's a foil
13:24
so I guess that gets
13:26
placed on the back of your eye so it's really quite
13:29
you know it's essentially a piece of metal
13:32
um it's got a couple of advantages
13:34
it doesn't penetrate as much so it's got as
13:37
it really doesn't do a whole lot of damage
13:40
outside to the tumor itself
13:44
the only problem was
13:45
there was no Ruthenium in New South Wales a a a plaque
13:50
that is
13:52
not so much reusable but the block of metal that they
13:55
derive it from costs
13:58
$20,000 Australian which would probably be about
14:00
$13 or $14,000 us
14:05
um
14:06
the government said yeah we don't
14:09
it's it's not used off enough we're not gonna buy
14:11
another another one
14:14
so yeah I sort of joined a political campaign
14:17
for them to buy some of this for
14:19
New South Wales which I thought was crazy
14:22
and in the end a philanthropist donated
14:26
um $20,000 for one to be bought
14:29
but um we thought I'm not gonna wait for this um
14:34
and I got sent down to see one of the other gurus of um
14:40
ocular melanoma the ocular oncologist
14:43
in Melbourne Victoria which is another state
14:46
in New South Wales which is a hell of a lot further
14:48
away
14:49
so the pleasure of having
14:50
of seeing him and having a plaque
14:53
um
14:54
placed by him and
14:56
it's there I learnt the the various
14:58
different techniques all of us would have had
15:00
ultrasounds done of our eyes
15:02
um Danet it's a very funny feeling Danet
15:05
does your oncologist do eyes open or eyes closed
15:11
mine it's been a mixture of both
15:13
yeah I think when my eye was originally diagnosed um
15:16
you know first they had me close
15:18
my eyes but then they put a numbing drop in and I
15:20
remember I mean it's it's one of the most like probably
15:23
visceral like memory like memory feelings
15:26
that I have like in my body like I I have a visceral
15:29
response to like cold things on my eye because I know
15:32
well at least I knew before my eye was enucleated
15:35
I knew what that felt like
15:36
um that like kind of cold jelly like pulsating
15:39
um and it was very bizarre um I actually still
15:43
see my ocular oncologist and I have her look after
15:46
my my one good eye
15:47
and so she'll do just to make me feel better
15:50
um don't tell me don't tell insurance she does
15:54
she does the ultrasound of my healthy eye
15:56
just just for my peace of mind because I'm like
15:59
my tumor wouldn't have been found
16:01
without an ultrasound wow
16:02
um but the feeling of having the ultrasound done
16:07
when you can see
16:08
like cause I can I can see out of my good eye
16:11
by the time my ocular melanoma eye was diagnosed
16:13
I couldn't
16:13
see out of it at all so like I it wasn't like my
16:16
the ultrasound was blocking anything but anyway
16:19
ultrasound
16:20
definitely a funky feeling but I've had it both ways
16:22
on the eye
16:22
like the surface of the eye and on the eyelid yeah
16:25
looks I'm sure some people relate
16:27
this story when you go and see a different
16:29
ocular oncologist and look I for
16:32
almost two years I'd had eyes closed and this guy
16:35
oh no we do it with the eyes open here it's like what
16:39
you like why
16:42
um yes so that was just yes something
16:44
they do differently in Victoria Victoria
16:46
we have this yeah for sure New South Wales
16:48
Victoria thing in Australia so yeah very different
16:51
so just like for clarification
16:53
it sounds like you did end up having Brachytherapy
16:56
right
16:57
okay so then when you had the brachytherapy um
17:00
because of the location of where your tumor
17:03
was like far in the back of the eye is what I'm understanding
17:05
like behind the macula um
17:08
how I mean how
17:09
how was that did you feel that like how long was the black
17:12
left there like I just I know some people have varying
17:14
degrees of pain and doctors
17:17
tend to tell us like oh yeah you're not gonna feel anything
17:19
and and I you I felt everything
17:22
it was very painful speaking speaking American
17:24
yeah you'll just need a couple of Tylenol it'll be OK
17:27
uh no uh no it's it's it is worse than that um
17:33
yeah look uh it's it's interesting it's different um
17:37
again different different things happen in Australia
17:40
we stay in hospital for the whole of our plaque placement
17:44
I know a lot of you guys would have been
17:47
discharged and and
17:49
and sent to a nearby hotel or whatever
17:53
um obviously that's a money saving um thing
17:58
uh whatever but no we we stay in
18:00
we stay in hospital the whole time
18:02
so I was in a ward with people with blocks put in
18:06
and yeah look it's it's uncomfortable um
18:11
I did have stronger painkillers than Tylenol
18:15
I'll admit that but um yeah look it happens um
18:21
talking about
18:22
other things that relate to to having the the
18:26
plaque put in um the issue about biopsies uh
18:30
we're talking about 14 years
18:32
ago or that stage would have been 12 13 years ago um
18:37
two two things come to mind firstly uh it wasn't
18:42
promoted as heavily in Australia at that time than it isn't it
18:45
wasn't in the US
18:46
um the science and the genetics
18:49
of ocular melanoma wasn't as strong
18:52
uh technically a small tumor central back of the eye
18:57
there was a
18:59
a risk of missing it not getting enough tumor cells
19:03
a perforating the eye all that sort of stuff
19:06
um so it was never really an option for me
19:10
and yeah yeah
19:11
right at the back of the eye is difficult for plaque
19:14
placement
19:15
and yeah as we as we go down the track in my story
19:20
it probably wasn't as ideally placed as possible
19:25
and it's interesting the techniques that
19:29
uh oncologists use to place the plaque
19:33
because they've gotta
19:34
figure out now where's that tumor now if it's a large
19:36
tumor it it's quite obvious where it is
19:39
I think they sort of do things like shine
19:41
lights in the eye and see where shadows form and
19:44
place the plaque centrally over that
19:46
but if you got a tiny
19:47
tumor you've only just got to guess where it is
19:50
and then um
19:52
yeah you know you really don't want to irradiate
19:55
the macula the central part of the vision too much
19:58
so the technique
20:00
and I've talked to them about that you know they
20:02
center it as much as they can
20:03
and then they pull it away a little bit just to try and
20:06
preserve the macula
20:08
it's probably not really scientific but yeah
20:10
that's the the art
20:11
to plaque placement I believe but it's
20:33
it's such a tricky spot and it's
20:34
interesting that you know obviously 14 years ago
20:37
I I don't know like does Australia have proton
20:40
beam therapy at all in no there's no proton
20:44
beam in Australia our first proton beam unit is being
20:47
built in yet another state
20:50
um and
20:52
because I mean just understanding the placement
20:54
I guess I would I would venture to guess that you know
20:57
once proton beam
20:58
becomes available that tumors in that location
21:00
would be more likely to be targeted with proton
21:02
beam but I'm not a doctor well
21:03
it's interesting in Australia when
21:06
there's still some debate
21:07
about whether they're going to get the ocular
21:12
adaptors
21:14
bits that they need to do eyes with our proton beam
21:18
therapy but yeah just
21:23
yeah you know proton beam not available here at all so
21:28
so I guess I wanna I wanna fast
21:30
forward a little bit through your journey I know you had this original treatment and then when we
21:34
spoke earlier you also mentioned
21:35
that your tumor was recurrent later down the road
21:38
um so like it started to grow again
21:40
um what was what was the kind of like
21:43
brief summary of um that second
21:46
treatment of the eye before
21:47
you know before the future as we know it now has
21:50
has existed sure um
21:51
yeah obviously I went on the the six months
21:55
um have a look at your eye check up with um
22:01
Michael Giblin who's a Sydney specialist who
22:06
I originally met and then Li-Anne Lim who's um
22:10
who's come into the frame as well as a another
22:14
they work together you know as a team so
22:17
I've been seeing her a bit more lately
22:19
um yeah around 2019
22:24
uh 2020 I had I had uh some regrowth so I had
22:29
the tumor um was obviously enlarging
22:32
it got up to about 4 millimeters
22:35
which was obviously quite a significant
22:37
regrowth and it was quite obvious that the
22:39
yeah the field of radiation
22:41
damage was quite within the
22:43
where the tumor was uh or close enough
22:47
so then I went for a different form of treatment which is certainly
22:50
not done in in North America but it's
22:52
done quite a bit here and probably if it was available
22:56
would have been the way I would be originally treated
22:59
and that is external beam radiation which is
23:04
well we don't use protons we use electrons and photons
23:07
to to zap the eye so that's a it's what people would
23:11
would call standard radiotherapy in in around the world
23:16
yeah so yeah they've got a a uh
23:18
a radiation oncologist in Sydney that basically is a
23:23
national if not a world expert in
23:25
external beam radiation of the eyes
23:28
and you had a course of that
23:30
for a week and it was probably the most
23:32
horrific experiences of my life having
23:34
external beam radiation
23:36
because obviously
23:38
no I'm sorry I I mean
23:40
the cage and being strapped down all of it I've
23:43
I haven't done that part of radiation
23:45
but I had the mask made and it and it was
23:47
claustrophobic enough so you're gonna be essentially
23:49
you've got to stay really still
23:51
because these beams of radiation have to all
23:54
coalesce on that one spot where your tumor is
23:58
so obviously your eye has to be maintained very still
24:01
and so you get this mask device which is a
24:07
it's a sort of
24:08
hard plastic mask it's mesh really that's bolted
24:14
your head's bolted to a bed
24:16
and they told
24:17
well the first thing they said look this is
24:19
this is 10 or 15 minutes you'll be right
24:22
and um yeah you you get told you've got to focus
24:26
on this red dot and it's like
24:28
but I've got hardly any vision out of this eye what dot
24:32
so it's like well try and keep your eye really still
24:35
and uh an hour and a half later
24:38
I was sort of screaming to be let off the table
24:40
well probably not quite but it was like
24:42
it was it wasn't the most pleasant experience
24:46
um it
24:47
it got a lot shorter as the days goes on but I had yeah five days of
24:50
uh external beam radiation
24:52
and my tumor's been very quiet since then
24:57
well that's so good that it's been quiet
24:59
I'm sorry you had to go through double treatment um
25:02
I've had a different
25:03
scenario of double treatment but I know it it's a lot
25:06
it's definitely a lot to deal with um
25:08
especially when you know you go in kind of expecting
25:12
and being told
25:13
like hey this should just be a one and done kind of a thing for your eye
25:16
um and I I can only I can only imagine
25:20
how frustrating that probably was um
25:23
just to go through that experience
25:25
but I'm glad that you're here now on the other end of that
25:27
um you did mention though because of your background
25:30
as a general practitioner and just
25:32
your knowledge around you know ocular melanoma
25:34
from medical school that when you originally
25:37
received the diagnosis that you likely had ocular
25:39
melanoma and were kind of thrust into this waiting
25:41
period um
25:43
that you were pretty crestfallen
25:44
right you said that you you were pretty
25:47
you know that was that was a pretty
25:48
low moment to realize like hey I probably have ocular
25:50
melanoma and to recognize as a doctor yourself
25:53
like what that meant for the future um so
25:56
like early on did you have that fear
25:59
of the cancer you know returning or metastasizing
26:01
um and how has that kind of uncertainty
26:05
been something that you've Learned to live with over the last 14 years
26:08
um yeah look I was probably pretty crestfallen
26:12
probably for a couple of days
26:15
and then I suppose with the inevitability of having
26:18
having treatment for it
26:21
um the issue is um
26:25
you know being a being a doctor
26:27
especially being a GP is that
26:32
um we're very much experts in dealing with uncertainty
26:37
um and that's that's what we do as a as a specialty
26:41
so having an uncertain future probably wasn't as scary
26:47
for me as it was for a lot of other
26:50
people put in this sort of situation
26:53
um and also you know looking at the evidence around it
26:58
um you know
27:00
the fact that there's no difference between treatments
27:02
that prognosis is largely determined by the genetics
27:06
and of course
27:07
I didn't have a biopsy a biopsy wasn't possible
27:10
um
27:11
and then the question is you know at that sort of stage
27:14
would I have I mean
27:16
the biggest debate I have is would I have wanted to know anyway
27:19
whether I would want a biopsy and would I
27:22
would that change what I was gonna do and you know I
27:26
I thought at the stage well no I probably
27:28
I probably wouldn't have gone down that path anyway
27:31
but that's just me and
27:33
and my sort of decision because I know that
27:37
um and I also do psychotherapy in my practice
27:40
um at the time I actually did have psychotherapy um
27:45
that um you can
27:48
waste a whole lot of energy on worrying and anxiety
27:51
about the future but the future is gonna happen
27:54
anyway and being anxious
27:56
about it is not necessarily gonna change things
27:59
and you know I could spend
28:01
like we all can we can all spend a a lifetime of worry
28:06
and
28:08
about things that that
28:09
that may or may not happen and maybe
28:12
you know they won't happen would be such a shame
28:15
spending all that nervous energy and all that time uh
28:19
worrying about the future when
28:21
you know none of it eventuates
28:26
yeah
28:26
I love that I love how you how you explained that and
28:29
I totally agree I'm not gonna say that I don't worry
28:32
cause I definitely do worry sometimes I think we all do
28:35
but I think giving ourselves Grace you know
28:37
like you said
28:38
cancer is is a kind of a traumatic thing and
28:41
therapy is always a
28:42
always a bonus we're always gonna advocate for therapy
28:44
um but it isn't
28:47
it isn't the kind of thing that I
28:49
like to taint my experience of you know life as it is
28:53
on the day to day anymore than I have to let it and um
28:58
I like I like to I like to tell myself and
29:01
tell other people sometimes that like if cancer doesn't have an appointment
29:04
like it's not welcome and so I I mean
29:08
sometimes I put it in a box
29:10
sometimes I give it a different direction um but
29:14
it's it's interesting
29:15
like to hear you talk about this and I
29:16
I really think that your lens as a doctor
29:18
and being the general practitioner
29:20
having all this schooling I can I can almost
29:22
imagine like that you had to learn to talk to yourself
29:25
the way that you would want to be talked to
29:27
if you know if you were getting the news
29:29
from yourself as a doctor
29:31
I don't know if that makes sense but like
29:32
kind of like you know we
29:33
we talk to our friends sometimes better than we give
29:35
self talk to ourselves but I
29:37
I can imagine that made a big difference for you
29:40
absolutely and look I won't necessarily talk about the
29:44
well maybe I will the
29:45
the bonus of having cancer as a doctor is that
29:49
you know it actually
29:50
changes your perspective on a whole lot of things and
29:53
yeah you it helps you talk to um
29:56
you know your patients quite differently
29:59
um and yeah you don't necessarily
30:01
talk about your personal experiences no heavens no but
30:04
it gives you a whole lot of insight
30:06
as to how to talk about
30:08
about treatment about cancer about tests about
30:12
understanding things like scanxiety which um
30:17
you know being in
30:18
you know having ocular melanoma you really
30:21
come to grips with not only within yourself
30:23
but you see it on the online communities
30:25
yeah and one of the other things I've I've really
30:28
learnt about and appreciate about
30:30
I mean when I diagnose people with with rare conditions
30:34
or come across them with with a rare condition
30:37
I say you need to find um
30:40
a community group out there on social media
30:43
with your condition cause they really are the experts
30:46
because you know
30:48
I can I can tell you what I know I can look up stuff
30:52
and you know most people won't only see I mean GP's
30:55
would see ocular melanoma once in their practicing
30:57
career
30:59
ophthalmologist will see one every few years
31:02
retinal specialist will see them one a year and ocular
31:04
oncologist see them all the time
31:06
um but having that that group to access
31:10
is really good for seeing people that are on
31:13
various parts of the journey
31:15
some going well and unfortunately
31:17
some not going so well
31:19
but it's really important to to hear those voices
31:21
and get that sort of insight
31:24
especially when you're faced
31:25
with a number of options and you'll get
31:27
you know 20 different opinions for
31:29
from hopping onto the the the chat group
31:36
yeah absolutely um
31:38
well I mean community is absolutely such a huge piece
31:40
of
31:41
you know what I have found in you know the connections
31:43
that I've made through A Cure In Sight and
31:45
through social media through you know the the gift
31:48
that the internet
31:48
is right it can it can be a little bit of a blessing and a curse
31:51
I think sometimes but um but in the in
31:54
in the kind of gift
31:55
side of things is finding those people those like minded
31:57
people who
31:58
are having maybe a similar experience to your own um
32:02
and I'm always grateful
32:03
right when I'm able to make those connections so
32:05
I um I appreciate that you share about that so
32:09
you've been in this space longer than
32:11
you know than most people in the online space
32:13
get to kind of be witnessed to I think um
32:18
especially because I think that the tendency
32:21
um for people who were diagnosed you know 10 15
32:23
20 years ago
32:25
Facebook Instagram those things weren't really around
32:28
when you were originally diagnosed and so the
32:31
the kind of the drive to be online and to connect
32:34
with people across the world is maybe a little bit lower
32:36
but also I think you know again cancers
32:39
maybe not I mean it's still part of your story but also it's not like
32:42
it doesn't have to be your everyday if you're 20 years out and you're still doing
32:45
well um so
32:48
while you've been in this space
32:49
right where you're not actively fighting cancer
32:52
like all the time you're still having some level of
32:55
some you know some sort of monitoring
32:57
like you know that ocular melanoma is there it
32:59
could come back it might not but also you're doing well right now
33:03
how have you Learned to like
33:04
really just live your life in this space
33:07
um like are there
33:09
are there any things that you feel like have given you a direction
33:11
um and just like a purpose
33:14
maybe because of having your cancer diagnosis look an
33:17
interesting question I
33:18
must admit I don't think about that often
33:21
um the thing about being so far out is I haven't I
33:25
don't notice the visual loss on a day to day basis
33:29
which I mean for me that's a good thing
33:32
other than when I'm trying to do fine task
33:34
where I need two eyes um it's a bit of a struggle
33:38
um the thing I've I've lost in medicine is
33:42
I found it really hard to suture
33:45
so repairing um you know cuts
33:47
doing skin surgery which is really common in Australia
33:50
I I choose not to do that by choice so that's probably
33:53
the biggest change I've had in my
33:55
in my life but I must admit I
33:59
I rarely think about my ocular melanoma other than
34:04
in the context I'm part of a wider group so
34:08
yep I see my ocular oncologist every six months and and
34:13
I I have my eye examined I have an ultrasound
34:16
we have a chat about what's new in ocular melanoma
34:19
and you know
34:20
being on the Facebook group is it's also very much part of me as well and
34:25
and chatting to people like you Danet as
34:27
you know and and the other friends I've made
34:30
and thinking about going to to patient retreats
34:33
is always a good thing too and
34:35
having a chat yes no I'm so
34:38
excited we get to meet yes I'll be there in October
34:44
if you guys don't know what we're talking about we're talking about the Eye Believe conference
34:47
it's happening in Dallas Doctor Harbor and um Doctor C
34:50
if you know him he's a medical oncologist into in the
34:54
UT Southwestern campus and we're gonna be
34:56
we're gonna be in Texas so if you haven't registered
34:58
it's free to register
34:59
keep an eye out for more of the information
35:01
coming soon but definitely
35:02
make sure that you register come and meet Ian come and
35:04
uh meet the rest of the A Cure In Sight team and
35:06
and so many more people from the ocular melanoma no
35:08
no I
35:09
and I'll be wearing and I'll be wearing my eye shirt
35:12
my wife made this for me
35:14
oh yeah so yeah she's very much a part of yeah yeah
35:17
I love it that's so cool
35:20
it's very subtle like
35:21
until you pointed it out I don't think I would have like
35:24
totally noticed that yeah
35:25
that's how my eyes on your notice this
35:27
earlier in the in the podcast
35:32
yeah I know drop a comment
35:33
let us know did you notice
35:34
the eyeball shirt because I feel blind at the moment
35:36
I feel like I was missing out this whole time um
35:39
I could have been getting lost in all the eyeballs
35:41
down there so
35:43
Ian you mentioned the Facebook groups and just connecting with other people
35:46
how have you been able to like
35:49
some people find it really difficult
35:51
I guess is what I'm trying to get at
35:52
is that some people find it really difficult
35:54
to connect with people in the community because of
35:57
like the risk
35:58
I think the risk of losing someone right of
36:01
of growing close to someone and then having that risk
36:03
that they could pass away if they're higher risk
36:06
or if you know if they metastasize fairly early
36:08
there's all kinds of scenarios
36:09
and and that that level of uncertainty
36:11
like you mentioned is something you're used to as a doctor
36:13
but it's not something
36:15
maybe the rest of us are used to as much um so
36:18
how are you able to like
36:20
kind of hold gratitude for your experience and your
36:23
your journey as an ocular melanoma patient but also
36:26
kind of giving compassion
36:27
and still wanting to connect
36:29
with those even if they've had a harder
36:30
path yeah I suppose that
36:32
you know we're all at different parts of our lives
36:35
and different points when
36:38
we dive in and dive out of those
36:41
those social media networks and yeah I've
36:44
I've had some really good friends that have passed
36:48
um from ocular melanoma
36:50
um and I still I've got great friends that are still
36:54
um there and still
36:56
uh chatting away and people dive in and dive out
37:00
all the time I think one of the great things is
37:03
all of us are really there and will provide
37:07
support to those newly diagnosed
37:10
or those newly diagnosed with metastases
37:13
and try and help them on their journey I think
37:17
everyone does this with really uh good intent
37:21
and and sharing I think is is really good cause
37:25
being humans we're very much social creatures and so
37:29
we've all gone through a very similar
37:32
sort of journey we've got a whole lot in common
37:35
and being able to share that online
37:37
I think and in person
37:39
as we're about to do I think it's really good
37:46
yeah absolutely um for somebody who is newly diagnosed
37:50
right and they are just overwhelmed by this uncertainty
37:54
um and just kind of wondering you know
37:58
how do I how do I get through this next point
38:00
what would you want them to know about the possibility
38:02
of just living their life after the diagnosis
38:05
kind of after the dust settles um I think it's
38:06
important to realize that the dust
38:08
never probably really settles and it never really goes
38:10
away hundred percent it's always
38:12
it's always there to to some bit
38:14
um and it it a lot depends on also
38:17
people's underlying personality and
38:19
you know some people are really
38:22
Wanna be in it wanna be wanna know everything
38:24
and other people is like well
38:26
I'm just doing what the doctor says
38:28
and as soon as it's done well I'm not going to
38:32
to think about it anymore um
38:35
and I think most people are probably somewhere
38:37
somewhere in between those two extremes
38:40
um so yeah I guess my advice is um you know obviously
38:45
reach out to your friends reach out to your family
38:48
I think it's it's highly important
38:51
relying on an online community is probably not
38:54
you know 100% is probably not the best idea
38:57
it's really important that the people surround that are
39:01
around you are also part of your journey
39:04
and also recognizing that
39:07
uh people that haven't experienced cancer um
39:11
don't really understand
39:14
even those that are really close to you
39:16
and it can be really threatening
39:19
um when people um do have a
39:23
particular if they got metastatic disease
39:26
could be confronting well it's
39:27
obviously confronting for the person having it
39:29
but it's confronting for the people that are
39:31
around them as well
39:33
and they worry about the future and they worry about
39:36
about loss
39:37
um it's it's interesting um
39:42
my wife's obviously been
39:44
part of this journey very much with me
39:47
and um I don't think she
39:50
and she said to me she never actually realized
39:53
what ocular melanoma was all about and the risks of
39:59
you know death and metastasis
40:02
obviously the reverse order
40:04
um until she actually came to a
40:09
Ocular Melanoma Conference with me
40:11
um I think that was one at Stanford
40:13
we went to over in in California um you know that was
40:18
that was eye opening for her because she you know
40:21
she kept saying to me I didn't realise
40:23
what this is you know what you'd been going through
40:26
until I actually heard it from other people
40:29
and so yeah she's got friends within the
40:31
the um community as well um as far as other
40:35
carers and support people and family members
40:42
well I think it's wonderful that you've been able to find so much
40:44
support and I'm so
40:45
excited that you're gonna be coming over again um
40:47
from Australia over to Texas excited to meet you
40:51
um is your wife gonna be joining us as well
40:52
or just me my wife is a is a pharmacist and
40:57
she's runs a number of shops and of course unfortunately
40:59
she can't leave
41:02
much as you'd like to and
41:04
um but yeah I'd love her to come as well but um
41:09
yeah
41:11
well let her know we will miss her and we're grateful
41:13
that she's been such a huge support to you and um
41:16
and to other you know caregivers in the Om community
41:19
I think it's that's one of the things that we really try to highlight
41:21
at the Eye Believe conferences
41:23
lately the last few years we we emphasize
41:26
what we call a caregiver
41:27
camp where we have the caregivers
41:28
that come to the conference like really get together
41:30
and just join in the online
41:32
session if they're coming from a far and um
41:35
really just learn
41:36
what it means to be a caregiver of someone
41:37
with ocular melanoma and how to take care of yourself
41:40
because that's that's
41:40
important too for those of you guys listening
41:42
like like you said our caregivers
41:44
our loved ones our friends our family
41:46
like they're going through this you know obviously
41:48
in a very different way from us as the patients
41:50
but they are still a part of the journey and a part of
41:52
a part of the
41:54
I don't know the everything
41:56
that all of ocular melanoma can encompass
41:58
it just kind of depends on
41:59
what everybody's journey looks like which as we know it can look
42:02
very different I think that knowledge
42:04
only helps them help the person
42:06
that actually has the disease as well it's
42:09
it's just so important so I wouldn't
42:10
actually encourage yeah um as many carers out there to
42:15
get involved and
42:16
you know do think about coming to Dallas
42:22
absolutely
42:23
well I know that you are not only a long term
42:25
ocular melanoma
42:26
survivor but you're also a primary care physician
42:28
or a general practitioner as you said um
42:31
and this has been a conversation we've definitely
42:33
had you know between you and I on Facebook
42:35
off and on over the last I don't know six months or so
42:38
um about just the importance of like hey
42:40
you know you've asked me do you have a
42:41
a primary care physician
42:43
and I've been like what do you mean so
42:46
just to kind of tease at the future
42:47
guys um we're gonna have Ian back as a guest
42:50
to talk about the importance of
42:53
having a primary care physician
42:55
while you have a cancer diagnosis
42:57
um so Ian do you want to give us um
43:00
maybe just like like what's what's the difference just
43:03
give us a teaser
43:03
of what's the difference in your opinion
43:05
between a primary care physician
43:06
or a general practitioner and
43:08
your medical oncologist who is specifically
43:11
seeing you for uveal melanoma the problem with um
43:14
people with cancer is not everything
43:17
about them is their cancer
43:19
so if you're seeing you know a medical oncologist
43:23
or an ocular oncologist yeah sure they're doctors
43:27
but they're certainly
43:28
by no means experts in other realms of the human body
43:32
and often you know
43:35
talking about some of the psychological issues
43:37
or talking about you know things that aren't related
43:39
like hey when's the last time you had a
43:41
a prostate check or
43:43
you know you how's your blood pressure going that that
43:47
sort of physical things cholesterol that sort of stuff
43:50
um by all means you know you should be seeing a a
43:53
having someone looking after the rest of your
43:56
your body and your health so I'm a great
43:58
believer in the benefits of
44:00
access to good primary health care
44:05
yeah absolutely well that's just a little teaser
44:08
we're not gonna give you everything
44:09
but do come back and listen to Ian's episode in the near future
44:12
where we're gonna chat about the importance of having
44:15
having that that doctor
44:16
who helps to take care of the rest of you not just um
44:19
not just your cancer so
44:21
with that I wanna just thank our audience
44:23
those of you guys who've
44:23
listened if you've chipped in some comments thanks for
44:26
um engaging with the video here on YouTube or
44:28
if you're listening on the podcast platforms
44:30
um please make sure you subscribe leave us a review um
44:34
follow us on social media you know engage
44:36
with us we love to engage with you guys across the A Cure In Sight
44:39
community and we love to see you guys um
44:41
connecting with each other
44:42
um if you do want to connect with people uh
44:45
in an online space
44:47
that is you know not just a Facebook group
44:48
we do have a peer supported
44:50
zoom group that happens every Tuesday evening
44:53
um I know for those of you guys in you know the UK
44:55
Europe Australia other parts of the world
44:58
it's gonna be a little bit of a time zone
45:00
funk but um it's seven PM Eastern time every Tuesday
45:03
um barring a few holidays
45:05
but for the most part it happens almost every week 50
45:07
ish weeks a year
45:09
and so if you ever want to join that zoom group
45:11
just to be able to join and
45:13
and meet some other people in you know some kind of an online
45:15
face to face community we would love to have you guys
45:18
and we do offer primary like so originally
45:21
just diagnosed in the eye and also the metastatic community
45:24
can come and just kind of chat
45:25
in separate zoom platforms
45:28
just because we know that can be a little bit sensitive
45:30
it can be a little harder and darker
45:31
when you're in the metastatic
45:32
world and sometimes when you're
45:34
newly diagnosed you are not ready for that yet um so
45:37
anyway but Ian
45:38
I'm so grateful to you for being a guest on our podcast
45:41
and I look forward to our chat again in the future um
45:44
and I want to just give a huge thanks and shout out to our
45:47
sponsors
45:47
who make this podcast and our YouTube channel possible
45:50
we could not do this without them and without their generous
45:52
support of making this platform and this educational
45:55
resource available to all of you guys as patients
45:58
caregivers and anyone else in the ocular
46:00
melanoma community
46:01
so with that we will see you next time