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Tessa’s Story and Finding Strength in Storytelling | The Eye Believe Podcast · The Eye Believe Podcast

• 0:03
  hi everyone welcome back to the Eye Believe Podcast
• 0:05
  I'm Megan Today we have a wonderful guest
• 0:07
  we have Tessa Parry-Wingfield
• 0:09
  hi Tessa
• 0:10
  hi Megan
• 0:11
  thanks for having me on absolutely
• 0:13
  welcome to the podcast
• 0:15
  Tessa is an ocular melanoma patient
• 0:17
  and she is here for another patient story
• 0:19
  so Tessa tell us the beginning
• 0:21
  how did they find it when did they find it
• 0:23
  give us the backstory
• 0:26
  yeah well
• 0:26
  this was like properly out of the blue
• 0:28
  and I know everyone probably says that
• 0:30
  but the speed in which everything
• 0:31
  happened was quite extraordinary
• 0:34
  I had never heard of ocular melanoma
• 0:36
  um as many people I'm sure will empathize
• 0:39
  so I was out running
• 0:41
  jogging along the river here in the outskirts of London
• 0:44
  I'm in the UK based in the UK and just like a normal
• 0:47
  really normal day like it's a great day
• 0:49
  I'm plodding along not particularly fast
• 0:51
  and I have quite I'm very short sighted anyway
• 0:54
  um so it's very normal for me to have like
• 0:57
  I suppose adjustments in my strength of um
• 1:00
  my myopia prescription
• 1:02
  so I just noticed some slightly odd vision issues
• 1:07
  didn't seem like normal ones
• 1:08
  but I just was like something's not quite right
• 1:11
  it felt like my eyes weren't working together
• 1:13
  which it sounds really strange
• 1:14
  and was quite a hard sensation to describe to people
• 1:17
  um but I just immediately went to my um
• 1:20
  local optometrist as I often do just to
• 1:23
  I thought get a prescription tweak in my contact lenses
• 1:27
  and you know
• 1:28
  I still got my coat on it's a cold day
• 1:30
  and I haven't bothered to take my coat off
• 1:31
  cause I just thought I'd be in and out
• 1:33
  and um they
• 1:34
  they start looking really deeply in my eye
• 1:37
  and getting all sorts of horrible
• 1:39
  but now I associate them with horrible lenses out it
• 1:42
  you know out and looking deep
• 1:44
  trying to look into the back of my eye
• 1:45
  and all around my eye
• 1:47
  then the lady who had seen me said
• 1:49
  I'm just going to go and get my colleague
• 1:51
  and my heart started racing
• 1:53
  because I think once you get a second opinion
• 1:55
  that's when you know
• 1:55
  things are probably going a bit awry
• 1:58
  the other woman came in thoroughly looked in my eye and
• 2:01
  and and sort of nodded and went yes
• 2:03
  there's something there I'm on my own
• 2:05
  got my coat on you know
• 2:07
  have no idea what's about to come
• 2:08
  and they're like we
• 2:09
  you know there's something in your eye
• 2:11
  there's like a shadow cast
• 2:13
  um it's unusual
• 2:14
  you need to urgently go to an eye hospital
• 2:17
  it could be a choroidal freckle on your eye
• 2:20
  which as it transpires it probably could have been
• 2:22
  originally something like that
• 2:24
  or ocular melanoma and all I knew was melanoma
• 2:27
  skin melanoma so I said oh cancer
• 2:32
  and they went we're really sorry that
• 2:34
  these aren't the words you wanted to hear
• 2:35
  and I'm just sort of sitting there going
• 2:38
  you know literally what
• 2:39
  what is what is happening
• 2:41
  um and they're like
• 2:42
  but we can't diagnose as optometrist
• 2:43
  you do need to go and see a specialist
• 2:45
  so I actually was presenting
• 2:47
  for International Women's Day
• 2:48
  like comparing um
• 2:50
  hosting a day near me so
• 2:52
  interviewing people of how
• 2:54
  the whole day's worth of events that I was hosting
• 2:56
  the next day so naively
• 2:58
  I just put it off for another day
• 3:00
  because I'm thinking they probably got it wrong
• 3:02
  like it's you know
• 3:03
  highly unlikely but actually
• 3:05
  the Suburban Eye Hospital was calling me all day
• 3:08
  while I was trying to get this um
• 3:10
  International Women's Day event over and done with and
• 3:14
  um going
• 3:15
  you need urgently to come in
• 3:16
  I'm gonna OK
• 3:17
  I'll come I'll come in
• 3:18
  you know first thing tomorrow morning
• 3:20
  so I was starting to get really scared
• 3:22
  I obviously brought my husband with me
• 3:24
  and they did some scans um
• 3:28
  actually put up this massive scan on the
• 3:31
  on the wall
• 3:31
  and what I could see was that just a black shadow
• 3:35
  it was so sort of foreboding and terrifying
• 3:38
  um you know
• 3:39
  from like just running on a normal jog along the river
• 3:41
  to suddenly you're in an eye hospital
• 3:43
  when your eye is basically like a shadow
• 3:47
  and then I went into a room and um
• 3:50
  they said look we
• 3:50
  you know we think this is ocular melanoma
• 3:52
  we can't diagnose you need to go
• 3:54
  and see a cancer you know
• 3:55
  an eye cancer specialist and so then came
• 3:59
  you know only a few days wait
• 4:01
  I'm so so lucky that I didn't have to wait long
• 4:04
  because when you're in that kind of
• 4:06
  mode of terror and horror and
• 4:09
  and super scared about about it all um
• 4:12
  you kind of want things to happen quickly
• 4:14
  although you don't really
• 4:15
  cause you want to carry on with normal life
• 4:16
  but you you know
• 4:17
  you do need to know what's going on
• 4:19
  and so I saw a few days later
• 4:20
  I saw an oncologist
• 4:22
  words I never heard of in my life before
• 4:24
  who was amazing but delivered some terrifying news
• 4:28
  which is yes
• 4:29
  the tumor is sizable
• 4:30
  and so sizable that we need to remove your eye
• 4:33
  and that has to happen really quickly um
• 4:36
  because we're kind of in the danger zone and
• 4:38
  you know how many children have you got
• 4:40
  you've got to go off now for all your kind of CT
• 4:43
  pet CT scans of your entire body to see if it's spread
• 4:46
  you know all
• 4:46
  you know all these kind of scary moments really
• 4:49
  and I'll see you in two weeks time for the enucleation
• 4:52
  which is just such a horrendous word uh
• 4:54
  surgery which is obviously removal of the eye
• 4:57
  so yeah off
• 4:58
  off I trotted and went went for the scans and
• 5:01
  and awaited my fate which was um
• 5:03
  yeah the surgery at Moorfields
• 5:05
  which is the the prominent eye hospital in London
• 5:07
  that's gotta be so terrifying to go from nothing to oh
• 5:11
  we're just gonna take your eye out I think the
• 5:14
  you know I suppose the normal way we hear of
• 5:18
  like cancer diagnosis normally
• 5:20
  you have some sort of symptoms like pain or tiredness
• 5:24
  or maybe loss of weight or
• 5:26
  you know the stereotypical kind of cancer
• 5:29
  cancer symptoms
• 5:30
  and it was scary that I didn't have anything
• 5:34
  and it was just on
• 5:35
  it wasn't like a build up of vision issues
• 5:37
  that I'd ignored
• 5:38
  or it was just that one day where I went ooh
• 5:40
  things are a little bit odd
• 5:42
  and it's just lucky that I acted really quickly
• 5:44
  as well and went to my opticians and
• 5:45
  and sort of got them to check it out
• 5:47
  and that they could in fact see
• 5:49
  because actually in the UK
• 5:51
  and I don't know what it's like in the US but
• 5:53
  but my ocular oncologist said you know
• 5:55
  a normal optician wouldn't necessarily have the kit
• 5:58
  that's kind of
• 5:58
  extensive enough to be able to find these things um
• 6:02
  and yeah so it's lucky that at that moment
• 6:05
  so there were times
• 6:06
  now I look back that I did have a few symptoms
• 6:09
  um which we can go into if you want
• 6:10
  but they were things like
• 6:11
  I had a little bruise on the front of my eye um
• 6:14
  and it was and I went in a couple of times actually
• 6:16
  but it was put down to being a contact lens wearer and
• 6:19
  you know bruising my eye which
• 6:21
  you know now I think about it
• 6:23
  you obviously you kick yourself because is that a
• 6:26
  is that a thing like I don't
• 6:28
  you know am I how
• 6:29
  how um
• 6:29
  violently am I putting my contact lenses in
• 6:32
  ha um
• 6:32
  I've worn contact lenses since I'm about 10
• 6:34
  and I'm 47 tomorrow so I'm quite um
• 6:37
  experienced let's say
• 6:38
  at putting contact lenses in
• 6:39
  so just stuff like that you know
• 6:42
  trusting your instinct I probably should have um
• 6:44
  acted sooner on that but I suppose if someone says no
• 6:47
  all all fine and look in your eye and seems fine
• 6:50
  off you go you don't really
• 6:52
  you know act on it
• 6:54
  so really scary going from a seemingly just very normal
• 6:57
  normal life
• 6:58
  or be a bit of a mole with quite short sighted vision
• 7:01
  to you know
• 7:02
  three weeks from the run
• 7:03
  two weeks from seeing the ocular oncologist
• 7:05
  to having my entire left eye removed
• 7:07
  um just sort of yeah
• 7:09
  just going what on earth has just happened
• 7:12
  but also the scary implications of the diagnosis
• 7:17
  absolutely well
• 7:18
  first I'd like to say happy birthday tomorrow
• 7:20
  thank you thank you
• 7:22
  for being here to share your story for your birthday
• 7:24
  that's wonderful
• 7:25
  and then also I'd like to add the bruise thing
• 7:28
  I understand where you're coming from
• 7:29
  because
• 7:30
  how many times have you looked down at your leg
• 7:31
  and found a bruise and been like
• 7:32
  I have no idea where that came from
• 7:34
  so I if
• 7:35
  if a a doctor or some kind of a professional told me
• 7:39
  yeah that's just because you put your contact in
• 7:40
  I would believe it why wouldn't you believe it
• 7:43
  yeah I mean
• 7:44
  I just that it's definitely not a blame game
• 7:45
  and I blame myself I suppose for uh
• 7:48
  mostly for you know
• 7:49
  but Hindsight's a wonderful thing right
• 7:51
  and um
• 7:52
  it really didn't it
• 7:53
  there was no pain
• 7:53
  it didn't seem like a significant thing
• 7:55
  but it it was over a period of quite a few years
• 7:58
  where a tiny bruise would appear
• 8:00
  and then it and then it would disappear
• 8:01
  and then it would appear again
• 8:02
  and I guess my message is to anyone listening to this
• 8:06
  um I mean
• 8:06
  probably people listening
• 8:08
  I've got an ocular melanoma diagnosis or
• 8:10
  or know people who who do
• 8:12
  but you know
• 8:12
  if someone's listening to this and don't
• 8:14
  you know I just think any tiny symptoms
• 8:17
  it's your eyes
• 8:18
  can be more important in your body and your life
• 8:20
  so um yeah
• 8:23
  just any kind of niggles or things that
• 8:26
  you know you feel like maybe needs a second opinion
• 8:29
  to just go and and get that second opinion
• 8:31
  I wish I had
• 8:32
  yes and I've never heard of bruising
• 8:35
  as an ocular melanoma symptom before
• 8:37
  so I'm actually very glad that you brought this to our
• 8:40
  attention it's like a tiny
• 8:41
  it was like a tiny blue dot
• 8:45
  so it's not like a bruise as we know it
• 8:46
  it's like almost
• 8:47
  like where the blood vessels are almost gathered
• 8:49
  and kind of broken onto the whiteness of the eye
• 8:53
  um it's tiny
• 8:55
  tiny and slightly blue
• 8:57
  but my oncologist has since said that was probably the
• 9:01
  yeah the
• 9:01
  the tumor sort of manifesting in a way
• 9:35
  so they removed your eye how long ago was that
• 9:39
  so that was March 2023 two and a half years ago
• 9:42
  um it seems like in a way like so much has happened
• 9:47
  um my life has changed like an extraordinary way
• 9:50
  it's not all of it bad by the way
• 9:52
  and maybe we'll go on onto that
• 9:54
  but yeah that's sort of flown by
• 9:56
  but I suppose the time around
• 9:57
  the surgery and the recovery period is
• 9:59
  is is almost like everything's in slow mo
• 10:01
  because I had two and as anyone listening to this
• 10:05
  has had the same surgery and again
• 10:07
  I don't know the difference between the UK and the US
• 10:09
  but for me when I had the surgery
• 10:11
  I had seven weeks
• 10:13
  where I just had a conformer lens in my left eye
• 10:16
  um no actual eye
• 10:17
  and no prosthetic in my eye to allow for the healing
• 10:19
  of course and I just wore incredibly glamorous
• 10:23
  and incredibly dark glasses
• 10:24
  and so I could you know
• 10:26
  it was really important for me
• 10:27
  that I was able to go about my daily life
• 10:30
  see friends walk in the park
• 10:32
  you know get exercise and go about unnoticed
• 10:35
  because I wasn't ready to tell anyone really
• 10:37
  and you know
• 10:38
  my husband I think
• 10:39
  told a group of need to know close friends
• 10:43
  and I told my family but other than that
• 10:45
  it was
• 10:45
  it was so shocking and it happened all so quickly
• 10:48
  I didn't really feel like spreading the word
• 10:50
  it was actually really important for me
• 10:52
  that it could be kept a secret
• 10:53
  so that I could go about my life freely while I healed
• 10:57
  um yeah
• 10:57
  so just really big really glamorous glasses
• 11:00
  and it happened to just be really hot
• 11:01
  and sunny in the UK between March and kind of may
• 11:04
  which was really lucky um
• 11:06
  and then after seven weeks
• 11:07
  I had an interim prosthetic and
• 11:10
  you know just again
• 11:11
  all these things that you've never even heard of
• 11:15
  I've never met anyone with ocular melanoma
• 11:17
  I've never ever met anyone who's lost their eye
• 11:19
  I've never met anyone with an eye prosthetic
• 11:21
  so you're going through all these
• 11:23
  not only a cancer diagnosis
• 11:25
  and terrifying implications
• 11:26
  the surgery is not particularly nice
• 11:28
  although actually quite quick
• 11:30
  and the recovery is quite rapid compared to what you
• 11:33
  I suppose mentally feel like you're going through uh
• 11:36
  or what it should be like
• 11:38
  this sort of not having any reference point was very
• 11:40
  very difficult and doing all these first so
• 11:42
  you know
• 11:42
  you walk into the prosthetics department at Moorfields
• 11:46
  which is as I said the you know
• 11:47
  in London it's like the UK's main uh
• 11:50
  I I specialist centre and it's just a whole new world
• 11:53
  and it's so it's sort of like you're in a
• 11:56
  like some sort of fictional novel like you
• 11:59
  it it
• 12:00
  it's so strange
• 12:01
  but amazing kind people really help all that
• 12:04
  and my prosthetic expert Peter ocularist uh
• 12:08
  is amazing and so kind and made you feel so comfortable
• 12:12
  I then had an interim prosthetic for a period of time
• 12:15
  which I found
• 12:16
  actually more challenging than not having one
• 12:19
  um because it wasn't the right one for me
• 12:21
  it was just what they had in the drawer
• 12:23
  and it was the kind of blue
• 12:24
  but it wasn't my match and it was just
• 12:26
  you know so that was quite confronting cosmetically
• 12:29
  I suppose and then finally
• 12:31
  I guess and now I'm not remembering the
• 12:33
  the timelines really accurately
• 12:35
  but about three months later
• 12:38
  I was able to have my sort of bespoke eye
• 12:40
  which was um well
• 12:41
  which is what you see today
• 12:42
  which is kind of as good as a replica of my real eye
• 12:45
  as they could as they could get
• 12:47
  so yeah that's a that's a huge journey in itself
• 12:50
  let alone the kind of health journey I suppose
• 12:53
  oh for sure
• 12:53
  and I always am so impressed
• 12:55
  how great of a job they do
• 12:57
  matching it to the real eye like
• 13:00
  I mean they are works of art
• 13:02
  yeah and actually so Peter my ocularist he he
• 13:06
  you know he's basically an artist by trade
• 13:08
  you know um
• 13:09
  you know he's just a very visually uh
• 13:13
  amazing acute person who can who can
• 13:16
  you know
• 13:16
  create these works of art on acrylic essentially
• 13:19
  and actually the
• 13:20
  and I don't know what it's if it's the same in the US
• 13:22
  but the the technology um
• 13:24
  around prosthetics hasn't really advanced
• 13:25
  and I'm told in the last 50 years
• 13:28
  so you know it
• 13:30
  it's nothing um
• 13:32
  really avant garde or pioneering but actually
• 13:35
  interestingly I was put through a trial for prosthetics
• 13:39
  for a 3D printed eye um
• 13:42
  and I don't know if you have those um
• 13:44
  but it's it's brand new
• 13:46
  so my oncologist was behind the
• 13:48
  some of the research and and development around it
• 13:51
  and getting it off the ground
• 13:52
  and it was a kind of trial
• 13:53
  and I was put into the trial actually
• 13:55
  and I went through for the moldings um
• 13:58
  and then the
• 13:58
  the 3D printing was gonna happen in Germany
• 14:01
  but unfortunately something happened uh
• 14:03
  along the way
• 14:04
  I can't remember if it was like a supply chain issue
• 14:06
  or a lack of funding but
• 14:08
  but unfortunately
• 14:09
  just when I thought I was gonna get hold of this
• 14:11
  sort of new 3D printed eye
• 14:12
  which was going to be more accurate than ever
• 14:15
  because it would be exact replica
• 14:17
  so scientifically be able to take um
• 14:20
  an exact copy so size colour
• 14:23
  it would also layer on the colours
• 14:25
  so there would be more depth to the colour
• 14:27
  rather than just kind of surface on top
• 14:29
  yeah really
• 14:29
  really clever
• 14:30
  and I'm sure that's where the future will be going
• 14:32
  and we'll see that come out
• 14:33
  the problem is it's such a niche cancer right
• 14:36
  and so it's um
• 14:38
  you know the funding's not there
• 14:40
  like it would be perhaps for more mainstream cancers
• 14:43
  that is an issue and it's a cosmetic thing
• 14:45
  it's not a saving lives thing
• 14:46
  so I guess in terms of the priority list
• 14:48
  but I'm pretty sure my my
• 14:50
  uh ocular oncologist
• 14:51
  Professor Sagoo Will
• 14:52
  will do everything he can to get that off the ground
• 14:54
  cause actually even though it is just cosmetic
• 14:57
  it is so incredibly confronting
• 15:00
  um and anyone who's listening will empathize uh
• 15:03
  who's been through this you know
• 15:04
  it's so much to go through
• 15:06
  and then you know
• 15:07
  you can't like
• 15:07
  look at people
• 15:08
  or you've got to get used to looking at me
• 15:10
  it's just the most extraordinary turn of events
• 15:13
  and challenging scenario to go through all at once
• 15:16
  and it's so life changing
• 15:17
  so I do think that any advances in
• 15:19
  in sort of prosthetics
• 15:21
  would be an amazing help to people going through this
• 15:24
  and I think that's probably where it's going
• 15:25
  so yeah I nearly got my hands on a 3d printed eye
• 15:27
  which I would have been one of the first
• 15:29
  hundred or something in the UK but
• 15:31
  but it hasn't quite happened yet
• 15:33
  I have not heard about 3D printed eyes yet
• 15:36
  so that's fascinating
• 15:37
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• 15:40
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• 15:55
  it is true the funding issue absolutely
• 15:59
  I think being rare is just hard
• 16:02
  and so that's why we try so hard to advocate and
• 16:04
  and get it out there
• 16:07
  so again
• 16:08
  thank you for being here and telling us all about this
• 16:10
  because this is all so helpful for the whole cause
• 16:13
  and trying to get it that spotlight that we really
• 16:17
  really need
• 16:19
  yeah I think there's and
• 16:20
  A Cure In Sight is doing amazing things
• 16:22
  um in this respect
• 16:23
  I think
• 16:25
  you know and I
• 16:26
  it's a difficult one isn't it
• 16:27
  I write a quite a lot about my experience
• 16:29
  because I was a journalist for 10 years
• 16:31
  and I'm in communications
• 16:33
  actually now so I feel really
• 16:34
  and PR and I feel really strongly about um
• 16:36
  I guess the story around ocular melanoma
• 16:40
  the messaging you know
• 16:41
  I think
• 16:42
  can be quite confronting around cancer in general
• 16:44
  middle aged cancer you know
• 16:45
  that's I think it certainly in the UK
• 16:47
  the UK media is notorious for
• 16:49
  you know sensationalizing things
• 16:51
  but there's a huge debate at the moment about
• 16:54
  rightly so
• 16:55
  about why there's been such a spike in midlife
• 16:58
  cancer diagnosis around certain cancers
• 17:00
  you know not ocular melanoma
• 17:02
  which has stayed uh
• 17:03
  according to to my oncologist
• 17:05
  fairly steady actually over the past um
• 17:08
  few decades but you can't help as a consumer of news
• 17:11
  feel that sort of shame and blame sometimes
• 17:14
  like you've done something wrong you
• 17:16
  you know you've got too much cortisol
• 17:18
  or inflammation in your body
• 17:20
  you've eaten too much sugar and all this stuff
• 17:22
  and so um yeah
• 17:24
  I've I've sort of been on a bit of a mission to
• 17:27
  to try and change and challenge
• 17:29
  some of the stereotypical narratives
• 17:31
  and views around the cancer
• 17:33
  the sort of more generic cancer conversation
• 17:36
  yes I think education and awareness raising
• 17:38
  and one of the messages or messages
• 17:41
  but one of the I suppose
• 17:42
  key aspects of something I feel passionate about is
• 17:45
  just because you get a rare cancer
• 17:46
  do you have less right to survive and live
• 17:49
  and have access to medication
• 17:51
  skin melanoma over here I keep comparing sorry
• 17:54
  but I really don't know the
• 17:55
  the landscape in the US so I don't
• 17:57
  wouldn't want to to say uh
• 17:59
  with authority but over here
• 18:00
  skin melanoma we've had extraordinary breakthroughs
• 18:03
  I mean unbelievable
• 18:05
  so
• 18:05
  immunotherapy developments over here for skin melanoma
• 18:09
  like there's never been
• 18:10
  it sounds really crass way of saying it
• 18:12
  but
• 18:12
  there's never been a better time to get skin melanoma
• 18:15
  because of these this access
• 18:16
  this amazing immunotherapy
• 18:18
  which is saving so many more lives
• 18:20
  and prolonging the lives of of
• 18:22
  you know thousands of people
• 18:25
  ocular melanoma there are clinical trials
• 18:28
  of course going on
• 18:29
  and I know that A Cure In Sight is very much
• 18:31
  you know involved in
• 18:32
  in in raising funds
• 18:33
  but for all those kind of things
• 18:34
  I'm sure and education
• 18:36
  but it still doesn't feel like it's in the mainstream
• 18:39
  or particularly accessible
• 18:40
  it feels like it's sort of
• 18:41
  you know far behind
• 18:43
  if you like and that's to do with funding
• 18:45
  and funding ultimately is to do with priority
• 18:48
  and so yeah
• 18:49
  there is a I guess
• 18:49
  a very poignant question do
• 18:51
  if you have a rare cancer
• 18:53
  should you be any less have a right to live less or
• 18:57
  you know less likely to survive
• 18:59
  if you like
• 19:01
  I completely agree we are very underfunded
• 19:03
  and it is something that we're fighting for and
• 19:06
  you know we're making strides
• 19:08
  but it's hard it's an uphill battle for sure
• 19:11
  and I agree with everything you said
• 19:13
  yeah I mean
• 19:15
  that's tough yeah
• 19:16
  so we've just got to bang the drum and uh
• 19:19
  you know do what we can
• 19:20
  I think you know
• 19:21
  to my point of I'd never heard of ocular melanoma
• 19:25
  ocular oncology
• 19:26
  ocular oncologist and enucleation ocularist
• 19:30
  I mean you know
• 19:31
  it's um
• 19:32
  and and there's only about 600 cases in the UK
• 19:34
  of ocular melanoma a year
• 19:35
  it's so rare and yet I got a call um
• 19:38
  about a year after my surgery
• 19:40
  from a friend who lives in my area um
• 19:43
  and she said a friend of hers
• 19:46
  was going through the same situation as me with
• 19:49
  with her right eye so the other eye to me
• 19:52
  and I was like oh
• 19:54
  I don't I mean
• 19:55
  it is so rare I
• 19:56
  I really don't think so this
• 19:58
  this this woman lives 1 km from my home
• 20:02
  she has a partner called Mark
• 20:04
  my husband's called Mark she has two cats
• 20:07
  I have two cats
• 20:08
  um we are exactly the same age
• 20:11
  we are pretty similar in character and personality
• 20:14
  we have the same likes and dislikes
• 20:17
  and um
• 20:19
  I said of course she can call me uh
• 20:22
  without a doubt
• 20:22
  but please don't put her on the phone to me
• 20:24
  unless you're sure that she's facing something as
• 20:27
  kind of grave as
• 20:28
  you know an ocular melanoma diagnosis
• 20:30
  but also enucleation of the eye
• 20:32
  because there's so many other things
• 20:33
  you know obviously
• 20:33
  kind of radiation options that can be involved if
• 20:36
  if it's not so far progressed
• 20:38
  and our mutual friends so no
• 20:39
  no I think
• 20:40
  I think she is actually facing that
• 20:41
  so anyway Joe
• 20:43
  she's called phoned me minutes later
• 20:46
  turns out we have the same ocular oncologist
• 20:48
  Professor Sagoo Morefields
• 20:50
  we have the same oncologist who's obviously um
• 20:53
  for the surveillance and monitoring mostly of the liver
• 20:56
  and at same ocularist um
• 20:58
  dealing with our prosthetics
• 20:59
  so actually at that time she was um
• 21:01
  waiting to hear her diagnosis
• 21:03
  but unfortunately she did
• 21:05
  she did get an ocular melaonma diagnosis
• 21:07
  and a year and two weeks to the day
• 21:09
  probably in the same room in more
• 21:11
  she probably stayed in the same room in Morefields
• 21:13
  she had exactly the same operation as I did
• 21:15
  by the same person and
• 21:17
  the parallels in our lives
• 21:18
  have just been extraordinary
• 21:19
  we've become great friends since
• 21:21
  and actually
• 21:22
  we've written together about it in the times
• 21:24
  which is the national news
• 21:25
  editorial newspaper over here
• 21:26
  and we've been on BBC
• 21:28
  Women's Hour to talk about our friendship
• 21:30
  and stuff like that so um yeah
• 21:32
  it's it's so rare uh
• 21:34
  talking about the the rare nature of
• 21:35
  of the cancer but yet
• 21:36
  we have these kind of strange ha ha
• 21:39
  coincidental parallel things going on so close
• 21:42
  so that's that's a little bit out of the ordinary
• 21:45
  that is really funny and it's funny how the world works
• 21:49
  and brings people together
• 21:50
  we actually had a post on our Facebook page
• 21:52
  not too long ago about how rare it was
• 21:54
  I think it was maybe for Rare Cancer Day
• 21:56
  and somebody commented
• 21:58
  I don't think it's really that rare
• 21:59
  cause I know all these people in my town that have it
• 22:01
  and we were like no
• 22:02
  it really is that rare you just
• 22:04
  I don't know like
• 22:05
  it's just the world's weird
• 22:07
  yeah and then you're like well
• 22:08
  is it something in the water
• 22:10
  you know I don't know
• 22:11
  so
• 22:13
  I think that is an important point is
• 22:15
  you know
• 22:15
  how do we get to the bottom of how this is caused
• 22:19
  and I know sometimes you just have to reconcile your
• 22:23
  the you know
• 22:23
  yourself with the fact that it's just biological
• 22:25
  bad luck and there's a glitch in the system
• 22:28
  and it's not as nothing deeper than that
• 22:30
  you know I remember just
• 22:31
  I've constantly searching for answers
• 22:32
  for the first 12 months
• 22:34
  it actually drove me a bit nuts because I
• 22:37
  I just was like wow
• 22:38
  if you know
• 22:38
  if I know what's caused this
• 22:39
  then I can kind of do something to combat you
• 22:42
  you know those negative causes and
• 22:44
  and perhaps
• 22:45
  stave off any negative consequences of this all
• 22:48
  and I think it it
• 22:49
  it puts you firmly more in control in a
• 22:51
  in a situation where you feel completely out of control
• 22:54
  but I've asked far and wide and we still don't
• 22:56
  we still haven't got to the bottom of it
• 22:57
  my my oncologist
• 22:59
  who's in charge of my surveillance and monitoring
• 23:01
  really did make me laugh because I think he's
• 23:04
  you know for the 10th time I was saying so
• 23:05
  you know what have I done
• 23:07
  what have I done and again
• 23:08
  to my point of the news
• 23:10
  and the constant narratives about middle aged cancer
• 23:13
  and he just turned me said oh
• 23:15
  were you a pilot like this
• 23:17
  completely seriously and I'm like
• 23:19
  ha ha
• 23:19
  nope that's not been on my career list pilot
• 23:22
  he's like oh
• 23:23
  I was just thinking you know
• 23:23
  maybe maybe if you've been a pilot
• 23:25
  but you know
• 23:25
  the expose like radiation exposure
• 23:27
  something like that and I'm like no
• 23:30
  so even he's like you know
• 23:31
  everyone's kind of clutching at straws still
• 23:33
  I don't know if that's the case in the US
• 23:34
  something perhaps to do with my Irish heritage
• 23:37
  pale skin and blue eyes has been mentioned as most
• 23:40
  you know as in terms of the demographic
• 23:42
  you know of
• 23:43
  of people who get
• 23:44
  who are more likely to get ocular melanoma just
• 23:47
  and possibly a freckle which I mentioned at the very
• 23:50
  very beginning that's gone rogue a bit like this
• 23:52
  both skin cancer um starts
• 23:54
  so yeah
• 23:55
  getting to the bottom of it is
• 23:56
  is difficult as I said maybe
• 23:58
  you know in my case
• 23:59
  something in the water in our local area
• 24:02
  yeah I mean
• 24:03
  you never can tell and I think originally
• 24:06
  I think they thought sun exposure
• 24:08
  and now they're thinking that's not even a factor
• 24:10
  or maybe it's not
• 24:11
  as much of a factor and they still don't really know
• 24:13
  so I think it is important not to blame yourself
• 24:16
  try to you know
• 24:17
  live as healthy of a lifestyle as you can
• 24:19
  like we all try to do
• 24:20
  but definitely make sure you're not blaming yourself
• 24:23
  and yeah
• 24:25
  hopefully one day they'll figure it out and we'll know
• 24:27
  but yeah and then the sun yeah
• 24:29
  I suppose you know
• 24:30
  the sun point
• 24:31
  that's the first thing I said because of course
• 24:33
  melanoma skin melanoma
• 24:35
  I got pale skin things like that
• 24:36
  but apparently not it's the latest um
• 24:40
  sort of findings but who knows yeah
• 24:43
  who knows you can't
• 24:43
  you can't beat yourself up
• 24:45
  because there's so many other things that are on your
• 24:47
  kind of worry
• 24:48
  anxiety list that needs to be put to the bottom
• 24:51
  and actually I was
• 24:52
  you know
• 24:52
  listening to some of your episodes from things like the
• 24:55
  those of nutritionist and well
• 24:56
  well being and experts and things like that
• 24:58
  and so yeah
• 24:59
  it's just about doing everything you can daily
• 25:02
  just to be as healthy as possible
• 25:04
  and I guess as robust as possible if
• 25:06
  you know treatment and surgery comes your way
• 25:09
  but not yeah not blaming yourself
• 25:11
  and shaming yourself for something that
• 25:13
  you'll never know that
• 25:14
  whether you did or not
• 25:16
  absolutely we can only try our best and we do every day
• 25:20
  tell us where are you now and going into the future
• 25:25
  yeah so I would say I'm in a state of limbo
• 25:28
  which is um
• 25:30
  I will take it I'm
• 25:32
  ha ha you know
• 25:33
  limbo is fine for me um
• 25:35
  after the
• 25:35
  the kind of shock and awe of March 2023 and recovery
• 25:40
  I have a liver MRI every six months
• 25:43
  and so I'm kept a very close eye on and we wait and see
• 25:46
  and um
• 25:48
  yeah that's
• 25:49
  that's literally all I can report on that front
• 25:51
  um it's a strange existence
• 25:53
  I'm so hugely very grateful that I didn't have
• 25:57
  you know like other cancers
• 25:59
  that you go straight into some very strong chemotherapy
• 26:02
  um system
• 26:03
  you know and
• 26:04
  and there's a ocular melanoma
• 26:05
  so very different isn't it
• 26:06
  it's like you know
• 26:08
  all the conventional cancer treatments
• 26:10
  that you've ever heard of or
• 26:11
  you know
• 26:11
  someone you love go through kind of don't really apply
• 26:15
  and it's it's a very different type of cancer
• 26:17
  and it's in the way it kind of um
• 26:19
  manifest and then progresses
• 26:21
  I sit and wait uh
• 26:22
  and hope that that
• 26:23
  that doesn't come my way but obviously
• 26:25
  you have to be sort of
• 26:26
  very aware of the fact that it might um
• 26:29
  but try and yeah
• 26:30
  keep anxiety at bay and and hope for the best
• 26:34
  you know people on clinical trials over here
• 26:36
  you know so there are the very beginnings of um
• 26:39
  of clinical trials
• 26:40
  which have been pretty groundbreaking and
• 26:42
  and I guess
• 26:43
  quite similar to the immunotherapy we talked about
• 26:46
  about skin cancer
• 26:46
  and you'll know more because I know that you
• 26:48
  you sort of deep dive into the latest
• 26:51
  sort of pioneering treatments
• 26:52
  stuff in in your uh podcast
• 26:55
  but yes I do know people who are on clinical trials
• 26:58
  or being monitored so
• 26:59
  they can be put straight onto the immunotherapy trial
• 27:03
  you know the moment anything changes
• 27:05
  it's comforting to know that there are some changes
• 27:07
  and advances but for now yeah
• 27:09
  I find those so that I'm on a six monthly cycle of a
• 27:12
  let's see another six months and then we go again
• 27:15
  well I'm very glad that everything is going well so far
• 27:19
  and I'm glad that you're here to share your story
• 27:22
  and um
• 27:24
  I love that you've been able to write about it
• 27:27
  and go on the BBC
• 27:28
  I think like those are all such wonderful things
• 27:31
  tell us a little bit about that
• 27:33
  the first thing I wanted to do was go
• 27:34
  and crawl under a rock
• 27:36
  for a really long period of time
• 27:37
  as I mentioned
• 27:38
  I really couldn't even say the words out loud
• 27:40
  it just was all so
• 27:42
  I don't know so um
• 27:45
  well it's so shocking
• 27:46
  but again this sort of so niche and so unheard of
• 27:50
  it was just a lot to take in and to understand
• 27:52
  I didn't have anyone to talk to and go well
• 27:55
  you've had this and like
• 27:56
  there's no comparison there's no cancer competition
• 27:59
  like none of it's good but
• 28:01
  you know if I had breast cancer
• 28:02
  for example then I would be able to be either know
• 28:06
  or be given like a whole list of friends
• 28:08
  you know connections that I could speak to
• 28:10
  and have a reference point and ask the questions
• 28:14
  but it's just it's quite a lonely disease actually
• 28:17
  because um
• 28:18
  until I met Joe of course
• 28:19
  my my one eyed comrade as I call her because
• 28:22
  you know you just just
• 28:23
  just no one that I
• 28:25
  I know and it even who hasn't had ocular melanoma
• 28:28
  but but
• 28:28
  you know has an eye prosthetic or some just something
• 28:31
  there was just no one to talk to
• 28:33
  and so you know
• 28:34
  I think for a really quite a long time
• 28:37
  it's just about quietness and being surrounded by love
• 28:40
  which is you know
• 28:41
  one of the positives
• 28:43
  and amazing things to come out of it
• 28:44
  is that you know
• 28:45
  you are so protected and supported and things like that
• 28:49
  and then actually after about I
• 28:51
  so I'd written because I'm a journalist
• 28:53
  I sort of written quite a lot down
• 28:54
  it just felt like a cathartic experience for me
• 28:58
  yeah I just wrote tons and tons and tons of stuff
• 29:01
  it really helped me
• 29:02
  and then I kind of revisited it about a year later
• 29:04
  and I was like you know what
• 29:06
  it's not ideal that it's my life
• 29:08
  but it's a really compelling story
• 29:10
  and I know that there's quite a few lessons as well
• 29:13
  to learn for people and you know
• 29:15
  I think it could really help people
• 29:17
  because there is this kind of middle aged
• 29:19
  cancer narrative going on in the UK media certainly
• 29:21
  and it's like a near daily thing
• 29:23
  you can't really move for another story of this
• 29:25
  and that and this and that
• 29:26
  so yeah I wrote about my experiences at the times
• 29:29
  I've been on radio yeah
• 29:30
  radio shows BBC Women's Hour
• 29:32
  things like that
• 29:33
  and I've been really trying to spread the word actually
• 29:36
  ever since
• 29:36
  and I felt it's really given me some bit of a mission
• 29:40
  and something
• 29:41
  really positive to come out of something negative
• 29:44
  so I'm co authoring a book as well
• 29:46
  with a fellow journalist
• 29:48
  we need to get it commissioned actually
• 29:49
  so if anyone's listening
• 29:51
  probably needs to start in the UK market
• 29:53
  so maybe not a relevance but um
• 29:55
  we over here you have to have an agent
• 29:57
  and then you need to get it commissioned
• 29:59
  and go through the process
• 30:01
  we could just write it
• 30:02
  but I'd much rather go through the normal
• 30:03
  conventional channels
• 30:04
  but the thing that we found that was missing was not um
• 30:08
  I suppose
• 30:08
  there's lots of really good cancer self help books
• 30:11
  so it was so helpful and useful to us
• 30:13
  when we were going through it
• 30:14
  my my um colleague
• 30:16
  my co author had prostate cancer
• 30:18
  but the thing that was missing was something that
• 30:21
  to help everyone around us
• 30:23
  cause everyone wanted to support in any way
• 30:27
  they could they wanted to do the right thing
• 30:29
  but there's just they don't know how
• 30:31
  they don't know how to do it right and how to help well
• 30:35
  because it's such a
• 30:35
  sort of difficult situation all around
• 30:37
  it's so highly sensitive and actually
• 30:40
  because I'm in communications
• 30:41
  I sort of did a kind of crisis
• 30:42
  comms plan for all my friends
• 30:44
  and I'm like do this
• 30:45
  don't do that say that
• 30:46
  don't do that and they poor things couldn't
• 30:47
  you know even breathe
• 30:49
  um or move an inch for fear of getting it wrong
• 30:51
  but um
• 30:51
  the book is all about how to help
• 30:54
  support people going through cancer
• 30:55
  or living with cancer um
• 30:57
  well and in the right way
• 30:59
  kind of kind and practical guide
• 31:01
  and we're going to include
• 31:02
  you know oncologist carers
• 31:03
  psychologists people with cancer
• 31:06
  people caring for people with cancer
• 31:08
  from the very beginning of like diagnosis
• 31:10
  actually through to death
• 31:11
  and having some quite candid conversations about how to
• 31:14
  support in the right way
• 31:15
  because everyone wants to do the right thing
• 31:17
  but it's so easy
• 31:19
  and I've done it myself in the past to do the right
• 31:21
  you know the wrong thing
• 31:22
  say the wrong thing you know
• 31:24
  cancer cliches cancer clangers of
• 31:27
  you know
• 31:27
  ubiquitous really when you're going through this
• 31:29
  so yeah that's kind of my next
• 31:32
  a project to keep kind of spreading the word
• 31:34
  and I am an ambassador for an eye charity over here
• 31:37
  as well so I'm trying to sort of raise awareness of
• 31:40
  of that charity and um
• 31:42
  also raise funds so by doing some crazy things
• 31:46
  I'm climbing Mount Kilimanjaro in Tanzania in February
• 31:50
  so yeah
• 31:50
  no rest after a period of quiet
• 31:53
  I'm now yeah
• 31:54
  no rest
• 31:55
  my goodness you are a busy lady
• 31:58
  well I'd love to hear all of that
• 31:59
  that's fantastic
• 32:00
  do you want to give us some links that we can share to
• 32:05
  um your socials or the charity that you support
• 32:08
  or anything like that yeah
• 32:09
  absolutely that would be fantastic
• 32:10
  so my Instagram is seeing underscore life
• 32:12
  underscore clearly uh
• 32:15
  which is Tessa Parry-Wingfield as well
• 32:16
  to make sure you got the right one
• 32:18
  and my charity that I'm ambassador
• 32:20
  and support is the Victoria Cohen
• 32:22
  Eye Cancer Charitable Trust
• 32:24
  the V C E
• 32:25
  C C T
• 32:26
  that's a really long name
• 32:27
  I now
• 32:27
  they do great work because they um
• 32:30
  provide the funds for education
• 32:33
  for aspiring ocular oncologists
• 32:35
  but in places in the world where they don't have any
• 32:37
  so you know
• 32:37
  in some countries
• 32:38
  if you got an ocular melanoma diagnosis
• 32:41
  that would be awful
• 32:42
  because there wouldn't be anyone for you to go to
• 32:44
  with this kind of specialist expertise
• 32:46
  so that's I feel really passionate about that um
• 32:48
  charity it's humble but
• 32:50
  you know small and humble
• 32:51
  but also very mighty and doing great work
• 32:53
  I have my own platform
• 32:55
  which is to do with all the kind of storytelling
• 32:57
  aspects and the speaker gigs that I do
• 32:59
  to try and spread the word
• 33:00
  which kind of
• 33:01
  houses everything that I've written about so far
• 33:03
  if people are interested
• 33:05
  which is TessaParry-Wingfield.com
• 33:08
  fantastic
• 33:09
  and we will link all of those in the show notes
• 33:11
  so if you want
• 33:12
  you can just pop down there and check them out
• 33:15
  Tessa is there anything else that you want to cover
• 33:17
  before we wrap up very happy to be in touch with anyone
• 33:21
  they want to chat through
• 33:22
  whenever I do any um
• 33:24
  article or podcast or radio
• 33:26
  I think it's really important to keep the channels open
• 33:29
  I really really think that sharing stories
• 33:31
  makes people feel less alone
• 33:33
  and I know that sort of helped me through my kind of
• 33:36
  diagnosis and
• 33:37
  and surgery was kind of you know
• 33:39
  knowing that other people out there
• 33:41
  and the advice that they would give
• 33:43
  which is often you know
• 33:43
  quite raw and candid
• 33:45
  what would I say to people that it's been horrendous
• 33:48
  but also not all awful ha ha ha
• 33:54
  um because you do
• 33:55
  so as to my Instagram uh
• 33:58
  account name seeing life clearly you
• 34:00
  and with the irony of having one eye
• 34:03
  um which is minus 8
• 34:05
  ha ha ha myopic
• 34:07
  it does give you you know
• 34:09
  a huge kind of jolt
• 34:10
  I suppose to make the most of everything
• 34:13
  and I think it gives you great clarity on
• 34:15
  on what matters uh
• 34:16
  what's important um
• 34:18
  who you should surround yourself with
• 34:21
  you know what
• 34:21
  what you wanna do with your life
• 34:22
  the things that matter you know
• 34:24
  maybe it's a cliche but
• 34:26
  but it certainly has happened to me
• 34:28
  so and so I see that as a positive
• 34:30
  you know being given a bit of a kick up the butt to uh
• 34:34
  just get on with stuff
• 34:35
  and not let life sort of pass you by
• 34:38
  yeah so
• 34:38
  I think that's probably what I'd say
• 34:40
  as a sort of closing remark
• 34:42
  I love that well
• 34:43
  thank you so much for being here
• 34:45
  like I said I will link everything in the show notes
• 34:48
  so everyone can follow along
• 34:50
  I think your story is amazing
• 34:51
  and I'm just very grateful
• 34:52
  that you came to share it with us
• 34:54
  and help us raise awareness
• 34:55
  so thank you so much for that
• 34:58
  no well
• 34:58
  thank you for having me I
• 34:59
  you know I think you're doing great work over there
• 35:01
  I think it's quite interesting
• 35:02
  I'd love to know a bit more about what's going on
• 35:04
  in the US but um
• 35:05
  I'm sure it's you know
• 35:06
  similar or parallels um
• 35:08
  but yeah thank you for the opportunity to speak to you
• 35:11
  yeah absolutely
• 35:12
  we have a lot of exciting clinical trials coming up
• 35:17
  we just did a webinar and it is in editing right now
• 35:19
  hopefully by the time you guys all watch this
• 35:21
  it will have been posted
• 35:23
  there's a lot of great information
• 35:24
  but we're constantly
• 35:26
  bringing doctors on the podcast and the webinars
• 35:29
  with the latest information
• 35:31
  so follow along and watch the things that we put out
• 35:34
  and it really is fascinating
• 35:38
  the progress they're making
• 35:39
  we just launched our biobank
• 35:41
  our biobank with pattern.org is now live
• 35:44
  so anybody watching please go check that out
• 35:47
  it is amazing because it
• 35:50
  seamlessly integrates with your registry account
• 35:53
  so if you go to our registry
• 35:55
  the insight registry and you register
• 35:57
  and then you go to the biobank and you submit a sample
• 36:00
  those two will actually integrate
• 36:01
  and talk to each other
• 36:02
  and this whole thing is really gonna help progress
• 36:06
  the research advancements
• 36:09
  treatment it it's gonna be a big deal
• 36:11
  so we have a lot of great stuff in the works on our end
• 36:13
  as well as a lot of great clinical trials
• 36:15
  and we're constantly having doctors come and
• 36:19
  just talk on our platform
• 36:20
  so that we can get the information out
• 36:21
  and so with that
• 36:23
  I encourage everyone to please follow us
• 36:26
  not only on YouTube Podbean
• 36:28
  Apple Spotify
• 36:29
  wherever you get your podcast
• 36:30
  but also on our social media outlets
• 36:33
  because without the followers and the viewers
• 36:37
  we can't get sponsored to continue doing this
• 36:40
  so if you like the content we're bringing you
• 36:42
  not only follow us but watch it
• 36:44
  even if you put one of our playlists on
• 36:46
  and just leave it on all day
• 36:47
  we don't care
• 36:48
  but the views are what helps us get the sponsors
• 36:51
  and then that's what brings you this free education
• 36:54
  basically so please
• 36:55
  please please
• 36:56
  everyone watching go subscribe
• 36:58
  watch leave us a comment and a heart
• 37:01
  that would be amazing
• 37:02
  and then let's talk a little bit more about resources
• 37:05
  as we close out
• 37:06
  if you are looking for someone to talk to
• 37:08
  in this community we have several Facebook groups
• 37:11
  please join us on Facebook if you're on the platform
• 37:15
  also we have a Tuesday night zoom meeting every Tuesday
• 37:18
  there are two rooms
• 37:19
  a regular room and a metastatic room
• 37:21
  so
• 37:21
  you can come and talk to other people who have ocular
• 37:24
  melanoma in that zoom
• 37:25
  every Tuesday night
• 37:26
  and then also subscribe to our newsletter
• 37:29
  if you go to our website ACureInSight.org
• 37:31
  there's a button at the top to subscribe
• 37:32
  we send out a newsletter once a month
• 37:34
  with all of this information
• 37:35
  so if you're not into social media
• 37:37
  that's fine subscribe to the newsletter
• 37:39
  we also send out a few other emails
• 37:41
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• 37:44
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• 37:47
  visit us in zoom check us out on Facebook
• 37:49
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• 37:52
  so we can keep bringing you this great information
• 37:54
  you guys all have a wonderful week
• 37:56
  and we will see you next week