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The Power of a Treatment Buddy | The Eye Believe Podcast · The Eye Believe Podcast

0:03
hey everyone
0:03
welcome back to the Eye Believe Podcast
0:05
I'm Megan and today we have a special episode
0:07
we have two guests today
0:08
we have Brianne Ward and Bev Shaw
0:10
hi ladies
0:11
welcome to the episode hi hi
0:14
so I would like both of you ladies
0:16
to tell us a little bit about yourselves
0:17
and your diagnosis Bev
0:18
do you wanna go first sure
0:20
um I was diagnosed with um
0:25
ocular melanoma in June of 2023 here in Edmonton
0:31
Alberta Canada
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um and I started seeing the oncologist
0:36
Doctor Weis uh
0:38
and also Doctor Roelofs here in Edmonton
0:40
after my
0:42
cancer moved to my liver
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I did have two separate ablations
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I had one in March and one in July
0:49
and after the July one um
0:52
the first MRI showed that there were numerous um
0:56
new tumors as well as two larger ones
0:58
and at that point in time
0:59
I decided to start Kimmtrak
1:02
which I did start at the beginning of March
1:04
of this year um 2026
1:08
so that's a bit about my journey so far
1:11
um I'll let Brianne introduce herself
1:14
and then we can talk about our journey together
1:18
thank you yeah
1:20
um so I was diagnosed um
1:22
in September 2019
1:24
it was a couple weeks before my 40th birthday
1:25
I like to joke it was like
1:27
the worst birthday present anyone's ever given me
1:30
um but I just had some weird
1:32
kind of changes to my left eye and the vision
1:34
so I kind of went and got it checked out
1:36
and yeah
1:37
they saw a lesion which I thought was a
1:40
a cut um
1:41
but they were saying mountain
1:42
and I was really confused
1:44
with the terminology they were using
1:45
um so then I got myself in a couple days later to see
1:49
um our amazing expert we have here
1:52
Doctor Weis in ah Edmonton
1:54
um and yeah
1:55
he confirmed it was ocular melanoma
1:57
so I think it was like less than a month later
1:59
I was getting brachytherapy
2:01
um so that was October
2:03
and then when we got the biopsy back
2:04
I was the same like Bev I was class 2
2:07
um so uh
2:09
yeah we did the every six months scans
2:11
here in Canada
2:12
our protocols are a little different than
2:13
I think in the States so for class 2
2:15
we scan every six months um
2:16
abdominal MRI
2:18
and then we were doing a chest X ray yearly
2:21
and I was clear for almost five years
2:23
and I thought I'd almost made it to that magic number
2:26
and then um
2:28
my liver MRI showed one little spot
2:31
that we thought was a little bit suspicious
2:33
so we watched it for a couple months
2:34
and it still looked not happy
2:37
and was growing a little bit
2:39
so we resected it because it was on a nice
2:41
easy spot just kind of on the outside edge
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we were able to go in um
2:45
laparoscopically and we snipped it out
2:47
and that was that and then my next scan was clear
2:51
miraculously like
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I didn't even know that was a thing
2:52
to have a clear scan after mets
2:55
um and so I kind of lived life for a few more months
2:59
and then my follow up scan three months later
3:01
so basically six months after my surgery um
3:04
showed I think it was a couple
3:06
two or three more mets but again
3:08
these ones were buried in my liver
3:10
so surgery wasn't an option at this point
3:12
they're really tiny so um
3:14
everything was really slow growing for me
3:16
so we took the approach
3:18
let's kind of watch it and see what happens
3:20
we have time to make decisions
3:22
I have four young kids so
3:23
I kind of wanted to maybe do some traveling with them
3:26
or just sort of live life a bit more with them
3:29
before I tied myself
3:30
I was really scared to start Tebentafusp
3:35
tie myself to the hospital every week
3:36
cause I felt like that was gonna be really restricting
3:38
so that was sort of my barrier
3:40
or kind of what was my hold up to starting therapy
3:43
or immunotherapy um
3:45
so I kind of put it off for a lot
3:46
but my oncologist they were really open minded
3:48
and they were supportive and reassured me
3:51
we have this time to wait
3:52
so um and then I think this past fall
3:55
there was a couple more lesions
3:56
and it was kind of like all right
3:58
I think we're done waiting
3:59
we need to start coming up with a plan to
4:01
to address this and and yeah
4:05
just stop what I'm doing on my like
4:07
on my own um
4:09
like I was you know
4:09
juicing and I accidentally went vegetarian
4:13
which then translated into going to vegan um
4:16
so I made a lot of health choices on my own um
4:18
lifestyle and diet changes
4:20
that I felt really good about um
4:22
but yeah I just thought it was kind of okay
4:24
let's bring on medical oncology
4:26
a little bit more on board
4:27
so um yeah
4:29
February I started Tebentafusp
4:31
and I had you know
4:32
the weekly step up doses
4:34
and we normally do the three in hospital
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but my blood pressure was acting a little weird
4:38
so we did five but we say like
4:40
the universe did that just so that
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Bev and I could have our overlapping dose together
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cause I was on number five and she was on number one
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so um
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yeah we have the same nurse um
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practitioner or coordinator
4:50
I guess she's called um
4:51
who's amazing we love Jenna
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um and so she had
4:55
she had to kind of follow the privacy stuff
4:57
but we were both like we know who each other are
4:59
like we know Bev is coming
5:01
Bev knows I'm coming so like
5:03
let's just talk about this openly
5:05
it was actually quite funny
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and so
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she couldn't promise that we would be in the same room
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but when I showed up Bev was there
5:11
and she had made us matching hoodies
5:13
and it was a really awesome experience
5:15
just to kind of finally meet her in person so
5:20
that is really cool so let's back up for a second
5:22
you guys met online first
5:24
what did you meet in like was it a Facebook group
5:28
um we met on a Facebook group um
5:31
when I was going through this or
5:34
you know the initial stages of mets
5:35
and even the initial diagnosis
5:39
um I
5:39
I tuned into a lot of Facebook groups
5:42
to kind of get as much information
5:45
and support as I possibly could
5:47
and I did notice that there was one
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lovely lady from Alberta who always said
5:51
welcome from Alberta welcome from Alberta
5:53
and then I realized
5:54
she was just outside of the city that
5:56
that I lived in and so her journey um
6:00
with mets started not so far off of mine
6:05
when she started the the medical oncology part
6:08
so I I kind of followed it a bit
6:10
and then and then I reached out on um
6:12
Facebook Messenger
6:13
to ask her all of the questions that I needed to ask
6:16
Brianne is a lovely lady very open on Facebook
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very open on all of the Facebook groups
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but I was able to ask the ones
6:22
that I wasn't comfortable asking online so
6:24
so we kind of were talking a bit that way as well
6:27
um
6:28
when I was initially scheduled for my first dose of
6:31
Tebentafusp
6:33
Jenna had come in and said
6:34
you know you're in luck
6:35
there's somebody else in the city that
6:37
that's getting this and she
6:39
unfortunately does have to do another hospital stay
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and I have already asked her if
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you know she's okay with kind of meeting you and that
6:46
and I said is that Brianne
6:48
and she went yes
6:49
you know her already
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so all the privacy stuff kind of went out a bit there
6:53
so it was
6:54
it was really a great thing to hear when I heard
6:58
I was starting
7:01
yeah
7:02
near misses in the hospitals as we were getting like
7:04
even just with our eye stuff or like
7:06
it was like oh
7:07
you were just there I was just there
7:08
and like
7:09
I'm surprised we didn't see each other or whatever
7:11
so yeah
7:12
it was it was nice to finally meet you in person
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after having kind of
7:15
built this relationship online first and
7:18
and the hoodie was just as a bribe
7:20
because she was gonna have to spend the night
7:22
in the same room as me and
7:24
and I don't know if I snore however
7:26
I wasn't prepared to I was prepared to have some sleep
7:29
didn't happen but um
7:31
so
7:31
that was just kind of a bribe for all the distractions
7:34
I was bringing to her and
7:35
and all the information I was looking for
7:37
it was so helpful having somebody who understood there
7:42
for my first one um
7:44
you know that could kind of say okay
7:45
this is you know
7:46
prepare yourself for this
7:47
this is what the one thing
7:49
you know I
7:49
I got from her as well to you
7:51
what to bring
7:53
um what to bring for my first one
7:54
where what a lot of my symptoms would be
7:56
they tell you that
7:57
but you don't actually realize it till you're there
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and I forgot my back scratcher on the first
8:02
first visit
8:03
that was the one thing on the whole list that I forgot
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so
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she she did prepare me for that
8:09
and she put up with me and
8:11
you know all of my friends popping in
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um but it was nice
8:14
like I said
8:14
even when some of those side effects were hitting
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to know that you know
8:19
it's gonna be okay you're gonna get through it
8:22
you're gonna get to number five
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like yeah
8:25
the side effects sucked
8:26
but it was like we were welcoming them
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welcoming them and like
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cheering them on kind of
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it was like yay
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you got the fever yay awesome
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like I did not say yay for the nausea
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so it was fun to kind of raw
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raw each other so
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and yeah
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she had um
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like she has the most amazing daughters and friends
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and so they come to visit her
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and they play games and like
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just to see that level of support that she has
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was so touching and beautiful
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like it was so nice to be so welcomed into that close
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knit family that that Bev has
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like that was so amazing
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so yep
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a nice thing is that my youngest daughter is a RN
9:01
a registered nurse and she um
9:03
was working at the
9:04
the cancer center and fully trained at it
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so she was able to watch for both of us
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um so that was
9:10
that was kind of nice on that side
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yeah we had like
9:12
our own private nurse essentially
9:14
you know that could kind of
9:15
there's Taylor
9:17
and yeah
9:18
advocate for us if we needed
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so yeah
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it was awesome
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I highly recommend everyone
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to have the exact same experience
9:25
we had my first experience
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you know what aside from the side effects
9:29
having you as a roommate was amazing
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because as I said
9:32
it made me feel like OK
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this is this is OK
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this is what I'm expecting
9:36
you know it's it's gonna be OK
9:40
that's such a great testament
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to what support can do for somebody
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I mean we all need support in every aspect of our life
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but especially when you're going through something so
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unknown and so scary
9:51
and the fact that you guys were able to come together
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in such a trying time and make it fun
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that's huge
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well even yesterday
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um we both had treatment yesterday
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and I could hear Brianne's laugh over the wall
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I couldn't see her but I'm
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and I'm messaging her saying
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are you here because so far
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since we've both been out of the hospital
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and just doing outpatient treatments
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we haven't run into each other again yet
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um but I could
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you know my
10:18
my daughter is going
10:20
that's Brianne's laugh
10:21
she's on the other side of the wall
10:23
so yeah
10:24
it is you know
10:24
when there's so few people that have this
10:27
and truly understand
10:29
it's nice to know there is somebody close by that does
10:33
it's so isolating to have this diagnosis to begin with
10:36
and then to enter treatment um
10:39
my my oncologist
10:40
you know when I asked him
10:41
so how many people do you know
10:42
have you gone through this with
10:43
he's like well
10:43
you know n equals 15
10:45
so I'm like No. 16
10:46
so I was like wait
10:47
I'm 16 patients like
10:48
that's nuts so
10:50
you know it's nice
10:51
and Bev and I have different oncologists
10:53
so it's cool to see like
10:54
the slightly different protocols
10:56
that each of us are following
10:57
based on you know
10:58
how our oncologists are are following this
11:00
so yeah
11:01
we can compare notes what works for each other
11:03
and yeah
11:04
it's really good and I can find out what
11:06
what's been working for her
11:07
that I can kind of suggest to mine
11:09
you know
11:09
although our two oncologists work very closely together
11:12
um you know it
11:14
it helps more in my mind
11:16
the more information that you can get
11:17
from medical personnel
11:20
as well as peers with the same issues
11:23
the better off you are
11:25
I think that's really important
11:27
so going through this together
11:30
you guys have a bond probably
11:33
deeper than a lot of people you meet in your life
11:36
what is that like coming out of this together
11:40
I do feel so connected to Bev
11:42
and it's like
11:42
I wanna follow up on her and check in on her
11:45
and like I friended her
11:46
her daughter Taylor on Facebook too
11:48
cause it's like yeah
11:49
I wanna stay involved and yeah
11:52
we do feel like you know
11:54
so alone but so together right
11:55
like um yeah
11:57
hopefully our our paths continue to cross and yeah
11:59
it was so funny yesterday when you
12:01
I heard this like
12:02
Ding on my phone and they're like
12:03
trying to like
12:04
it took three tries to get my IV in
12:06
and I'm like
12:06
trying to check what's who's texting me
12:08
and I'm like oh
12:08
my god Bev's over there
12:09
like she's just right over that wall
12:12
like it was just so awesome that yeah
12:14
it's it's um
12:16
makes it so less lonely feeling
12:18
or less isolating feeling
12:19
to know that she's just right there
12:21
and I can reach out anytime
12:23
we could even meet for coffee if we wanted
12:25
like it's just having that person that understands and
12:31
yeah we can kind of commiserate with
12:32
I guess it makes a huge difference
12:35
and I think one area where I can understand a bit more
12:40
um although Brianne's the expert
12:42
she's got a few weeks on me
12:44
um she's the expert in
12:46
as far as treatment
12:48
I can understand and and um
12:51
really empathize with the fact that
12:53
she's got more happening than just the
12:57
the treatment um
12:58
she is the mother of four young children
13:00
you know and she is still working full time
13:02
so that's so much on her plate that
13:05
you know I
13:05
I truly Brianne the
13:07
the grandmother in me
13:08
just wants to take that off of your plate for you
13:09
because it's so much to to deal with and and um
13:13
you know I
13:14
I although you're helping me with the
13:16
the Tebby
13:18
treatments and the side effects
13:20
and all of that that's going on there
13:21
I I just admire how
13:23
how well you're dealing with it
13:24
with all of the other life things that are going on
13:27
it makes my life look easy
13:28
I guess I don't know
13:32
you know so I think if
13:35
you know I don't know in the States
13:37
whether there's a lot of people in the same areas
13:39
that have this but
13:41
I do feel very blessed to have somebody close by that
13:43
that you know
13:45
we were talking earlier if we were having system issues
13:46
you could just come on over to my house
13:48
I mean I'm sure you're probably
13:49
maybe 30 minutes away um
13:52
which is it's a nice
13:53
nice to know
13:54
it is nice to know if something weird happens
13:56
I've got somebody I can reach out to
13:58
that I trust and is in close proximity
14:02
I guess I wouldn't have necessarily
14:06
built the same relationship with somebody who's
14:07
a little bit further um
14:09
for me I'm very much about seeing people in person
14:12
and even you know
14:13
texting and things like that
14:14
you get the information that you need
14:15
but I need to actually see that person
14:17
need to hear their laugh I need to know that
14:19
you know they're laughing on the other side of the wall
14:21
things like that makes things easier for me
14:26
definitely it's a different level of bonding
14:28
it's so true like you said
14:30
I look taller online which is the first for me
14:33
so like
14:33
just you really
14:34
you look a lot taller hugs and yeah
14:37
like it's just a real life person
14:40
makes a huge difference to be able to
14:42
to share this experience with
14:44
I guess like our
14:45
our partners and caregivers
14:47
they're amazing
14:48
and they're with us every step of the way
14:49
but to have that other person that's literally got
14:52
you know the IV in their arm with me
14:55
um yeah
14:56
we can check notes and like
14:58
you mean she left the hospital
14:59
I don't know 5
15:00
10 minutes before I did yesterday
15:01
so it's like oh
15:03
you know how
15:03
how is your symptoms tracking
15:05
and we're on the exact same schedule
15:07
kind of so that's kind of really cool to
15:10
to be living with her I guess in that sense
15:13
definitely and that's right every
15:14
every Friday
15:15
I look to see whether you're on the same floor as me
15:17
that's so cool
15:18
I love that you guys have that and you have each other
15:21
I think that's so special
15:22
and I yeah
15:23
a lot of people I think
15:24
don't have that
15:24
and are probably gonna listen to this and say
15:26
oh my gosh how do I find a buddy
15:29
I think that would be a really cool way to go about
15:32
sort of this treatment if
15:33
if possible so um
15:35
just because yeah
15:36
I mean there's
15:37
there's only so much
15:37
you want to bug your oncologist and your coordinators
15:40
and um
15:41
but like yeah
15:41
I can text Bev at midnight and just be like hey
15:43
this is on my mind or I'm wondering about this
15:46
and what do you think or whatever
15:48
and yeah
15:48
we kind of can share that sort of knowledge
15:51
I guess so and I would really encourage anybody that is
15:55
um you know
15:56
interested in establishing a relationship like that
16:00
to even do it through online
16:02
you know through some of the message boards through um
16:05
you know when you find that person that it it
16:08
it seems to it's kind of mirror you maybe um
16:11
maybe reach out to them and
16:13
and have that one on one conversation
16:14
you know off offline
16:16
like on Facebook or through text or something
16:18
so even though for me
16:20
it's been a godsend to have somebody close by um
16:23
it's it's
16:24
you can also try to build part of that relationship
16:26
one on one with people online
16:28
because you can get a lot of information
16:30
but you need that connection
16:31
it's not just information from those websites
16:35
that makes a lot of sense
16:37
so one of the things you guys mentioned was
16:40
Brianne was able to give you a list
16:41
of things you needed to bring to the hospital with you
16:45
do you guys have that list handy
16:47
can you share some of
16:48
or maybe just the most important ones
16:50
the back scratcher tell us about the back scratcher
16:52
why do you need a back scratcher
16:54
well my my
16:55
the worst symptom that I had
16:56
in the first four infusions
16:59
was the rash and the itchings
17:01
and when you're by yourself
17:03
when your support person is not there
17:05
and you need to get that one little corner in that back
17:08
you need that scratcher and it was fine
17:10
honestly I felt so comfortable with Brianne
17:13
from the day that I met her that
17:14
that first time I I
17:15
I would not care if I walked over and said okay
17:18
can you get my back um
17:20
but the next couple I was with people I didn't know
17:23
that weren't going through the same situation
17:25
and it it was kind of
17:26
just a little bit helpful to have that
17:28
as well as um
17:30
lotion I had
17:32
actually um
17:33
I think I just got that from you
17:34
Brianne online about you know
17:36
bringing some Cerave some lotion to
17:38
to deal with that and uh
17:41
you know going forward from there
17:44
now Brianne also has a very interesting story about um
17:47
I don't know if you want to share it
17:48
about your male nurse
17:51
oh
17:52
with the nurse who didn't understand
17:54
like the yes
17:55
female body that's where you could really have used the
17:57
you know somebody to just tell them no
18:00
no no this is normal
18:03
um yeah
18:04
like I mean
18:04
my first infusion ever I had like
18:06
they're very like you
18:07
you feel so cared for
18:08
because they're coming in constantly checking on you
18:11
and especially shift changes they're
18:13
they're coming in and doing all the
18:14
the checks and asking you know
18:16
especially with us we have to do the um
18:19
we have to write our paper
18:20
like I do
18:21
a little sentence to make sure
18:22
the cytokine release isn't affecting our brains
18:24
I guess um
18:25
we have to do like a whole
18:26
a whole little test they give us um
18:28
but then they ask if we're having any pain
18:29
and I just started um
18:31
my period like
18:32
on the Monday when I had tebby
18:34
the first one was on a Wednesday
18:36
and so the male nurse came in and he said oh
18:38
do you have any pain I said
18:39
well you know
18:39
I've got a few cramps just cause
18:40
you know I had my period or whatever um
18:43
and he said oh
18:45
you still have it and I was like
18:47
well it's only Wednesday
18:49
I would love it if it was only a 24 hour thing
18:51
but yeah unfortunately it's still here
18:53
um he said
18:54
and you're feeling pain and I was like yeah
18:56
and he said oh
18:57
well we might wanna do a scan for that
18:59
and I was like
19:01
okay if
19:02
if that's what you wanna do
19:04
just rule anything out I guess I'm all for that
19:06
but I think he probably went out to the charge nurse
19:08
and was like no
19:10
we're not doing a scan for her menstrual cramps
19:14
um but funny
19:15
I had the same nurse very
19:16
my very fifth day like
19:17
my very last day um
19:19
and he would I had to fight him kind of for um
19:23
the Benadryl because again
19:25
I was like
19:26
scratching the heck out of my back
19:28
and he came in just to do his check
19:29
and I said okay
19:30
you know I'm ready for the Benadryl now
19:31
and he said oh no
19:32
that was just a one time thing on your first stay
19:34
when you had that one medicine
19:36
but you know
19:36
it's not in your chart now
19:38
and we always have
19:39
a pharmacist comes in right after we're admitted
19:40
and they go through everything on our chart
19:42
you know if you need sleeping aid
19:43
these are what's ordered for you
19:44
if you have nausea this is what's ordered for you
19:47
um so I knew there was Benadryl ordered for me
19:49
um so I said
19:50
well no no
19:50
like I had that same medicine this morning
19:54
like that's why I'm here staying overnight again
19:55
so I would like the Benadryl please
19:57
and he kind of gave me a little bit of pushback
19:59
and then finally after about half an hour
20:01
he came back with the Benadryl
20:02
and he said oh
20:02
you're right it was on your chart
20:04
and I was like thank you
20:07
but that's when I knew by that fifth infusion
20:10
when I had to fight for the Benadryl
20:11
I had to fight for Tylenol
20:13
because I didn't spike a fever
20:14
but yet my biggest symptom for me is a headache
20:18
so
20:18
but they won't give me tylenol if I don't have a fever
20:20
so I had to really fight for that Tylenol
20:22
on that fifth night too
20:23
because I had a headache for like
20:25
I think it would have been 11 hours at that point
20:26
and I was just done with it
20:28
so I was like I know I don't have a headache
20:30
or I don't have the fever
20:31
but can we adress the headache now
20:34
and I really had to advocate for myself
20:35
to get that Tylenol so
20:37
I was very confident
20:38
that I was ready for outpatient treatment by
20:40
by week six because I had kind of like
20:43
I knew what I needed for meds
20:45
I knew what I needed to manage the side effects
20:47
um and so yeah
20:49
I felt really confident at that point I guess so
20:53
so even in as far as um
20:57
having met Brianne through the journey through mets
21:00
I also am taking that forward to um
21:03
I still get monthly injections Eylea
21:06
so when I'm seeing Doctor Weis
21:08
Weis and Doctor Roelofs
21:10
I always check who's in the city at that time
21:13
because they deal with everybody in northern Alberta
21:16
so there are some people that travel to the city
21:18
so I'm always looking in that waiting room for
21:20
for anybody who might be in the same situation
21:22
so that you know
21:23
I can connect and just the
21:25
that connection
21:26
and I don't know if it's just a me thing
21:28
but I I
21:28
it's important um
21:29
one time I did connect with two people
21:31
that were in the same situation
21:32
they had the the uveal melanoma
21:35
they didn't have mets but we were able to
21:37
you know talk it out a bit somewhere
21:38
um one couple
21:39
I think was from BC as well
21:41
um so it's
21:42
it was really you know
21:43
it's really shown me that
21:45
I typically don't reach out to people
21:47
but because of the example Brianne has shown me
21:51
I do reach out you know
21:52
whether I'm at the Cross Cancer Center or whether I'm
21:54
I'm seeing the eye specialist
21:56
because um
21:58
we have one guy for um
22:01
Alberta doctor Weis
22:03
um doctor Ezekiel Weis
22:04
he's amazing he's one of my heroes
22:06
yes um
22:06
and he covers like Alberta
22:07
he'll come to Edmonton for
22:09
I think one week out of every month
22:10
he's in Calgary um
22:12
I do think he covers Saskatchewan
22:13
and maybe a little bit of BC
22:15
but I think they do have somebody in BC now
22:16
but this is our guy so we all
22:19
like most people
22:19
either travel to Edmonton
22:20
or some people go to Calgary to see him um
22:23
for their eye treatments um
22:25
so it's not like
22:26
we all have our own person in our centers
22:28
like he comes to us and we kind of go to the
22:30
the closest center to him
22:32
Bev and I are fortunate that we just have to travel
22:34
you know an hour or so
22:35
to get to the eye clinic that he practices out of
22:38
for us but there are people that travel
22:40
you know a province over
22:41
to come see him for their regular visits
22:43
so um
22:44
yeah
22:45
that's one of my biggest things I'm most fortunate um
22:48
for is just I live where I live um
22:50
and then just being in Canada um
22:52
listening to some of the stories on the support groups
22:55
it just breaks my heart
22:56
for some of the financial hardships
22:57
people have to go through
22:58
and I complain about paying $11 for parking
23:01
cause that's literally sometimes
23:03
the only fee that I have to pay
23:04
for these treatments I'm going through
23:06
um I don't have to pay anything out of pocket
23:08
essentially there's no co pay
23:09
no no nothing
23:10
like I don't even understand
23:11
what some of you Americans are talking about sometimes
23:14
and it's so sad
23:15
that this is just another layer of stress that um
23:18
a lot of people have to worry about
23:20
and um yeah
23:21
Bev and I are so fortunate
23:22
that that's just not our reality for where we live
23:25
for me really
23:26
all I wanted to
23:28
to talk about was the benefit of that connection
23:31
you know whether it's in person
23:33
which we're fortunate enough to have
23:35
or whether it's you know
23:36
online through social media
23:38
um reaching out to that one on one
23:40
to me that was the
23:41
you know the big topic
23:43
yeah people don't need to be alone in all this
23:45
there's
23:47
um cause yes
23:47
it's so rare right
23:48
like what is it
23:49
three and a half out of million or something
23:51
six out of million like
23:52
depending on what million yeah
23:54
you kind of Google um
23:56
so yeah
23:57
to try and find each other can be hard
24:00
but we're out here so um
24:04
there are ways to find each other and connect
24:06
and I think once you do it's
24:08
I really resisted that for a long time
24:10
because
24:10
you Google the statistics on our mortality rates
24:14
and stuff and I thought well
24:16
it's scary to maybe
24:17
make friends with somebody
24:18
that's not gonna be here much longer
24:20
or whatever like
24:20
when you think about it on that side of things
24:23
um but
24:23
the level of support you get from these friendships
24:26
that you're making outweighs any of that kind of like
24:30
trying to self preserve your
24:32
your heart or your feelings down the road
24:33
right like um
24:36
yeah I just
24:37
the support is is like
24:39
you can't even put a price on that
24:41
um just being able to talk to somebody
24:42
that really knows what you're going through
24:44
and I think that you have to come to it
24:47
it doesn't automatically come right at the beginning
24:50
because as she said
24:51
you know sometimes seeing people pass um
24:56
makes it hard I don't wanna know too much about people
25:00
but then when you come to the realization that you are
25:02
where you are there's no prediction of the future
25:04
that's when the reaching out and the the
25:07
you know connecting makes most sense and
25:10
and he's of the biggest benefit
25:11
so you know
25:12
if you can't at the beginning that's
25:14
you know that's probably where I was as well um
25:16
but then I saw I see things like Brianne online saying
25:20
okay gonna go see Doctor Weis tomorrow
25:22
who else is gonna be sitting in that lobby
25:24
um you know it
25:26
it really inspired me when I was ready at the beginning
25:30
I wasn't ready there are times where
25:31
I have to take a break from social media
25:33
because I'm not ready
25:34
I'm not ready to hear about the fact that
25:37
we may not live to 100
25:40
um but overall it
25:43
you know that connection makes most sense
25:45
because honestly when I get scared
25:48
I don't want to necessarily share it
25:49
with my kids um
25:52
you know that's because I don't want to scare them
25:54
I don't want to scare my caretakers
25:56
um but it's a normal feeling
25:58
you know even though I'm okay with where I am and
26:02
and you know
26:03
the fact that six in a million get this
26:06
and I get to you know
26:08
get uveal melanoma instead of winning a lottery
26:10
you know he comes to terms with that
26:11
but it still doesn't make it okay
26:14
I think that is such an amazing perspective
26:18
and I love that you guys are bringing us this idea
26:21
that you can not only just be in a support group
26:24
and hear stories but you can actually make a meaningful
26:27
impactful connection with someone
26:29
a best friend a buddy
26:31
and then maybe take that to in person and
26:33
you know
26:34
A Cure In Sight has a lot of events
26:36
if you do want to meet people in person
26:38
we do our patient meetings and our 5 KS and
26:41
you know Swing For Sight
26:42
all of these things and that is the reason
26:44
is to give everyone an opportunity to come together
26:46
in person
26:48
but I love that you guys just did it on your own
26:50
you were like hey
26:51
we're in the same town we're having the same treatment
26:53
we're gonna schedule it together
26:55
and I think that that is such a cool idea
26:57
for anybody listening to say hey
26:59
maybe there's someone in my town that I could schedule
27:02
my treatments with so for people who are listening
27:06
what's one more takeaway
27:07
that you would want to leave them with
27:09
for going forward how they can find a buddy
27:13
find support
27:15
and anything
27:17
that would just be like
27:18
the last thing that you would want to leave them with
27:21
well I think for me I
27:22
I would say you kind of summed it up
27:23
A Cure In Sight has all the connections
27:25
the resources um
27:27
I actually did go to um
27:29
one of the events that was in Arizona last year
27:32
and it was amazing I got to meet people in
27:34
that was the first time I met um
27:36
people in person besides
27:37
you know
27:38
the people you're trying to kind of schmooze in with
27:39
in the waiting room
27:40
five minutes before your appointment
27:42
but to actually go to an event
27:43
that was dedicated to ocular melanoma
27:45
was incredible um
27:47
and moving and so wonderful
27:49
more than I could have ever imagined it would be
27:51
so if you can get to one of those events um
27:54
in person that's amazing um
27:56
and maybe that helps
27:57
kind of try and reach out to more people in real life
28:00
um for me
28:01
but yeah
28:02
I think just the connection
28:04
I think we are human beings
28:06
that thrive on connection with others
28:08
so um
28:09
if you get a rare diagnosis like this
28:11
it doesn't have to be isolating as it feels
28:14
um there's
28:15
there's lots of us out here that you can find
28:17
so A Cure In Sight is one of the best places to start
28:20
I would say
28:22
and I would tend to second that
28:24
um there's so much information
28:26
you can get from A Cure In Sight
28:28
um I do think that there is a lot of benefits
28:31
in talking to people whether it's over
28:34
you know Facebook
28:35
I have um
28:36
attended some you know
28:38
Facebook chat groups where we're all online
28:41
so you could see the people
28:43
for me that there's a lot of that in there too but also
28:47
as much as I believe that there
28:49
you need to have that one on one connection
28:52
be okay with yourself
28:53
if you're not ready for that at the beginning
28:55
just ask the questions online
28:57
that's what you're comfortable doing
28:59
um but don't completely isolate
29:02
you know
29:02
ask the questions that you need to when you need to
29:05
reach out when you need to
29:07
and then eventually
29:08
you'll probably get to a point where
29:10
you know a deeper connection with
29:12
with people is is what you need
29:14
find that one person reach out by
29:16
you know social media or email or
29:18
you know text and
29:20
and connect with that that one or two people
29:23
and if you can get to an event um
29:25
you know for A Cure In Sight
29:26
that would be my dream maybe
29:28
maybe you'll see Brianne and I the next one
29:31
oh well
29:31
we would love that that would be amazing
29:33
um the next one
29:35
actually this October the
29:37
Eye Believe is in Dallas and I know that's not in Canada
29:39
maybe we can do an Eye Believe in Canada though
29:41
that's not I think
29:42
out of the question I don't know
29:44
I don't know what the details are
29:45
that we would have to figure out
29:47
but we could work on it so we
29:48
we could definitely work on that
29:49
I think that would be cool
29:51
we do have flights
29:52
definitely you would know us if we got there ha
29:56
we'll be the ones with the pom poms
29:59
I love it okay
30:00
well I will see what I can do for that
30:03
about a Canada event because that would be very cool
30:06
and for anyone watching
30:08
we just hope that this brings you some hope
30:12
some comfort I love Bev
30:14
that you said don't feel like
30:16
the pressure to reach out if you're not ready
30:18
because that is also part of it
30:19
is you have to be on your own timeline
30:22
what's ready for you
30:23
so we don't want to be pushy and say
30:25
you have to have these connections
30:26
but if you're ready and you want them
30:29
and you see the benefit
30:31
we wanna bring this idea to you that there are ways
30:34
and you can get creative
30:35
and have a buddy that is a roommate it
30:37
you know
30:38
these are things that your doctor's not gonna tell you
30:41
hey would you like a roommate that is a friend of yours
30:43
no but can you make it happen for yourself
30:46
maybe you could try so this is a really cool idea
30:49
and I love that you guys are so open
30:52
to talk about your experience
30:53
and bring this idea and just share with us
30:56
so I just really appreciate your time today
30:59
thank you for being here and thank you for just yeah
31:03
opening up and sharing and
31:04
and being so candid
31:06
thank you so much Megan
31:07
for the opportunity
31:09
thank you this is an awesome idea
31:11
so I appreciate you thinking of it and including us
31:14
absolutely it's our pleasure
31:15
and you know
31:16
for A Cure In Sight the mission of A Cure In Sight
31:19
is to bridge the gap between doctors
31:21
and pharma and patients
31:22
but also patient to patient
31:23
we bring patient stories and that's why
31:25
so that we can all connect
31:27
so if you are watching and loving this episode
31:30
please subscribe please like and leave us a comment
31:33
let us know how do you connect with other patients
31:35
what are your favorite ways to find buddies
31:38
in the ocular melanoma world
31:40
and then check out our website
31:42
ACureInSight.org like we said
31:43
we have a lot of events coming up
31:44
swing for sight is every spring in Napa
31:48
the patient meeting is every October
31:50
but it does move and the reason it moves
31:52
is because we partner with a hosting physician
31:54
and the idea is that we'll hit every area
31:58
that most patients are going to go for treatment
32:00
in the US and possibly Canada let's
32:03
we'll talk about this
32:03
I don't know if it's a possibility
32:05
but I'll try I'll see what we can do
32:06
and um
32:08
you know if you out this year is Dallas
32:10
if you guys have an idea
32:11
for where you want us to go next year
32:13
let us know email us or leave us a comment
32:15
maybe we can make it happen
32:17
so hope to see you at some events
32:19
we have our 5 KS there's all kinds of things going on
32:22
and also every Tuesday night we have a zoom group
32:25
so if you're like you know
32:26
I just wanna pop on
32:28
and see what people are talking about
32:29
I'm not ready to talk you can join that zoom group
32:32
get a little comfortable and then
32:34
you know maybe work up to talking
32:35
there's two rooms one is metastatic and one is not
32:38
so you can also pick the room that fits
32:40
your comfort level for that particular Tuesday
32:43
so check out our website follow us
32:45
please join the community
32:46
we also have an app and if you're not into social media
32:48
if you're listening to this going oh
32:50
I just can't do Facebook that's what our app is for
32:53
on the app there is a chat function
32:56
and there are different rooms for different things
32:58
we just launched a male advocacy one
33:01
that's only for men so if you can check out the app
33:06
you might find some connection there
33:08
without having to go to social media
33:09
that's kind of our intent
33:11
and if there's not a room
33:12
that's specific to what you're looking for
33:14
let us know cause we can add it
33:16
and so maybe we could add a room that's
33:18
you know people looking to buddy up for treatment
33:20
that would be a whole
33:21
another program we could initiate if it's wanted
33:23
so let us know what you guys want
33:25
we're happy to bring you guys
33:26
whatever you need and want
33:27
just let us know what that is
33:29
so thank you everyone for listening
33:31
and we will see you guys next week