Latest / The Eye Believe Podcast / My 15 Years | Episode 12: Asking for Help & Setting Boundaries

Transcript

My 15 Years | Episode 12: Asking for Help & Setting Boundaries · The Eye Believe Podcast

• 0:05
  hey everyone
• 0:05
  welcome back to Melody's 15 years
• 0:08
  this is episode 12 I'm Megan
• 0:11
  welcome melody
• 0:12
  thank you so much
• 0:14
  today
• 0:15
  we're gonna talk about how to manage expectations
• 0:18
  of friends and family who wanna help
• 0:22
  but you maybe don't know how to tell them to help
• 0:25
  maybe you don't know where to put the boundaries
• 0:27
  it's coming from a good place
• 0:29
  but maybe it's not always what you want
• 0:32
  so we're gonna talk about this topic
• 0:33
  this is a big one
• 0:35
  so where would you like to start today
• 0:38
  well I think when you first get diagnosed with
• 0:41
  with anything major you get a major cancer diagnosis
• 0:44
  or you go to metastatic or what
• 0:46
  you know some big diagnosis
• 0:48
  everybody wants to help right away
• 0:49
  and they jump in
• 0:51
  and I think that causes you to not be able to really
• 0:54
  process what's going on with you
• 0:56
  because you have so much input from other people
• 0:59
  and everybody's gonna give you advice
• 1:02
  they're gonna tell you what to do
• 1:03
  and you can tell them
• 1:04
  don't tell me what to do 100 times
• 1:07
  and they're still gonna tell you oh
• 1:09
  you have eye cancer well
• 1:10
  I had a friend who had breast cancer
• 1:11
  she had chemotherapy and she's fine right now
• 1:13
  and you're like okay
• 1:14
  but this isn't breast cancer
• 1:15
  this is eye cancer or when they say oh
• 1:18
  but your eye looks so good
• 1:19
  you're doing great
• 1:20
  and they think they're being positive
• 1:22
  they think they're being supportive
• 1:24
  but they don't know and I
• 1:26
  the first thing I would say is
• 1:27
  please don't take that personally
• 1:30
  cause it's not meant
• 1:31
  people just don't know how to help
• 1:33
  and they don't know the right words
• 1:35
  and there's other cancers are so
• 1:41
  talked about
• 1:42
  when they hear ocular melanoma and it's rare
• 1:45
  and they don't know what it is
• 1:47
  they think it's just like breast cancer
• 1:48
  they think oh well
• 1:49
  you got your eye fixed you're good
• 1:51
  you know oh well
• 1:51
  my friend had this and she's good now
• 1:54
  well great
• 1:55
  but they don't understand the magnitude
• 1:58
  and the one thing I would say is
• 1:59
  do not explain they're not gonna understand
• 2:03
  you can explain it till the cows come home
• 2:06
  and they will not understand
• 2:08
  because they don't understand ocular melanoma
• 2:10
  they don't understand what it's like
• 2:12
  to get a diagnosis of a rare cancer
• 2:14
  in your eye
• 2:15
  they don't know what it's like to walk around
• 2:17
  not being able to see right
• 2:19
  you know they just don't understand
• 2:21
  they
• 2:21
  they don't understand the magnitude
• 2:24
  excuse me
• 2:25
  the magnitude of having two surgeries back to back
• 2:28
  if you had plaque radiation or if you had proton beam
• 2:32
  the five days of going every day
• 2:35
  um it might only be a few seconds
• 2:37
  that you're actually getting the
• 2:38
  the radiation but it's the prep time
• 2:40
  and
• 2:41
  all of that takes such a big toll on us 'cause it's a
• 2:44
  it's you kind of get into that flight or fight mode
• 2:48
  where your your your
• 2:51
  you have a heightened awareness of everything and
• 2:53
  and every little thing kind of bothers you
• 2:56
  and so when somebody says something to you
• 2:58
  the first thing you want to do is say
• 2:59
  stop it but you can't
• 3:01
  cause they're your friend or they're your family
• 3:02
  and you they you
• 3:03
  they love you and they are trying
• 3:05
  but it's
• 3:06
  I think it's really important to put healthy boundaries
• 3:09
  and to get people to understand
• 3:12
  these are my boundaries I love you
• 3:14
  but I can't answer every text message that comes in
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  please understand
• 3:18
  you know I'm
• 3:19
  I'm tired I need rest
• 3:21
  I need to not have visitors please understand
• 3:26
  this is something I see a lot
• 3:28
  with the metastatic patients
• 3:30
  when their treatment isn't going well
• 3:33
  and they share that information with friends and family
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  and of then they get inundated with visitors
• 3:40
  and they're not up to visitors um
• 3:42
  that's why you see
• 3:43
  a lot of people will say
• 3:44
  please no visitors at this time
• 3:46
  because they don't your friends and family
• 3:48
  don't understand how much of a energy output it is
• 3:54
  to sit there and smile and feel good
• 3:56
  when really all you wanna do is go to bed or
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  you know you're so sick to your stomach
• 4:00
  you don't know if you're gonna throw up right now
• 4:02
  or not so when you
• 4:03
  when you're going through all these things
• 4:05
  and you get inundated with visitors
• 4:08
  I think it causes us to feel a little guilty
• 4:10
  because we can't entertain them like we want to
• 4:13
  but then we get a little resentful
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  because they won't stop
• 4:17
  and so it's kind of this delicate balance of
• 4:19
  how do you tell people in a kind way
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  no please don't
• 4:27
  you know
• 4:29
  it's hard for everybody has their own personal style
• 4:31
  but I think it's important that we do it
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  that we say to people I'm not up to it today
• 4:37
  can we reschedule can we talk on the phone
• 4:40
  is it possible maybe do a video meeting with them
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  you know if you can sit in your chair and
• 4:46
  and where you can just sit and be still
• 4:48
  and just talk to somebody for five minutes on a
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  on a Facetime or a zoom or something
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  maybe that's what you need to do
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  but don't feel like you're obligated
• 4:57
  that these people have to come and visit you
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  because you're wearing yourself out
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  and then you know it
• 5:03
  it's just a real delicate balance
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  yeah absolutely
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  especially when you don't wanna hurt their feelings
• 5:09
  cause you know
• 5:09
  they're coming from a good place
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  that can be hard to speak up and say no
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  I actually don't want that
• 5:16
  if you think you're gonna hurt their feelings
• 5:18
  and people do get their feelings hurt
• 5:20
  but you know again
• 5:21
  you gotta advocate for yourself
• 5:22
  you gotta take care of yourself
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  we keep saying the same message over and over again
• 5:27
  you have to set boundaries and say
• 5:28
  please don't please don't surprise me with a visit
• 5:31
  please don't please don't
• 5:33
  think that we can go out to dinner and have fun
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  cause I probably can't make it through dinner
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  and it doesn't I'm
• 5:40
  I mean I'm
• 5:40
  I'm talking about
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  what I see a lot on the metastatic side
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  but also on the just newly diagnosed the
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  the mental toll it takes on you
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  when you get this diagnosis
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  is a lot and then
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  when you have to explain it
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  to every one of your friends
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  and they wanna talk to you about silly stuff that
• 5:57
  to you is not
• 5:58
  does not matter right now
• 6:00
  it's a lot of energy that you're putting out
• 6:03
  that you don't need to be
• 6:05
  and it's okay to to tell people
• 6:07
  let's talk about this later
• 6:09
  I'm not up to it now you know I
• 6:11
  I'm really not feeling well
• 6:14
  please don't I love you
• 6:16
  but it's too much and
• 6:18
  and most people will understand it
• 6:20
  if you can say it in a way that's nice
• 6:23
  you know um
• 6:24
  and
• 6:24
  one of the things I would caution everybody out there
• 6:26
  is be careful cause we do it as well to each other
• 6:30
  we're always wanting to rally everybody
• 6:32
  you know so it's like oh
• 6:34
  so and so's not doing good
• 6:35
  oh let me send him a message
• 6:36
  you're doing great you're gonna get
• 6:37
  you're gonna beat this everything is great
• 6:39
  that's not what they want to hear right now
• 6:41
  you know they probably don't even want to hear from us
• 6:44
  you know just a
• 6:46
  a a
• 6:46
  maybe a text message sending love and support
• 6:49
  don't you don't need to answer this
• 6:51
  but I'm sending you love and support
• 6:53
  you know let people know when
• 6:55
  when it's on our side too
• 6:57
  that you're not expecting a reply
• 6:59
  because imagine not feeling good
• 7:02
  and I know all of us have been there anyway
• 7:04
  but when you don't feel good and you get inundated
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  even though you think oh well
• 7:10
  I'm different I'm special
• 7:12
  I'm closer doesn't matter
• 7:13
  it's all the same it all adds up
• 7:16
  and so when we're dealing with something that we
• 7:20
  sometimes we just need space
• 7:22
  and please have people honor that space
• 7:27
  definitely so
• 7:29
  if you are in that situation
• 7:32
  where people are telling you
• 7:34
  I wanna help you and you're thinking
• 7:37
  I can't deal with this right now
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  cause that's also part of it too
• 7:40
  cause that that's another mental load
• 7:42
  now I have to make a list for you
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  I have to tell you what to do
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  um and
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  you know
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  a lot of people on the caretaker side have heard this
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  I think it's becoming more talked about
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  than it used to be that um
• 7:56
  people don't want you to say
• 7:58
  what can I do they just want you to do something
• 8:00
  but you also don't want to overstep
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  so we're making it very hard for the
• 8:05
  the friends and family
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  and I don't mean we as like
• 8:08
  you and me I just mean
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  like the
• 8:10
  you know society
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  I guess that on one hand
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  you know yeah
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  don't don't ask me what I want
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  just do it but then
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  on the other hand don't
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  just do it so there are some tools though
• 8:21
  that you can use to prompt people to just do things
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  but on your terms
• 8:28
  one of them is um
• 8:31
  called what friends do
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  and we did a whole podcast on this
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  so I feel like this is a good time to bring that up
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  but the website is WhatFriendsDo.com
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  and it's kind of like
• 8:43
  I'm sure everyone is familiar with
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  when you sign up for Meal Train
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  you know you put in who
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  what days
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  people can bring dinners or gift cards for food um
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  and it's just focused on meals
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  what friends do is similar to that
• 8:55
  but it's not just meals it's anything
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  so you can um
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  put I need somebody to walk my dog
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  I need someone to take my trash cans out
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  like in any little thing that you need done
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  you can put on this thing
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  and you can you can appoint a friend to do it for you
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  if you're like I can't even deal with that
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  are you crazy um
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  find a find a best friend that you trust and say
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  everything that needs done in my house
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  put on this thing and let them do it
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  and um
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  I I believe that
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  you can even limit it by group of friends
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  so you can have one list for your very personal friends
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  maybe like drive my kid to school
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  walk my dog come in my home
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  and then you can have another list
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  for friends that are on the periphery
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  like mow my grass but don't come in my house
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  so I think I'm not positive
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  but I think they have different lists like that
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  so what friends do could be an amazing opportunity
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  and then also the meal train
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  if you just want to focus on food
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  so there are some tools
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  that we can use to set our friends up for success
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  but then also put those boundaries out
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  you know you can help by doing something on this list
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  but please don't visit me
• 10:00
  I'm just not up for it I
• 10:02
  you know I love you
• 10:03
  but I just can't right now
• 10:06
  there's also Caring Bridge
• 10:08
  which is helpful
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  because you can put those type of messages in there
• 10:11
  here's an update on my care
• 10:13
  so you don't have to tell every single person
• 10:15
  cause that's exhausting how are you today
• 10:19
  okay for the 25th time
• 10:20
  I'm struggling
• 10:22
  or I'm feeling better or this has been really rough
• 10:25
  but how many times can you say that
• 10:27
  before you start getting
• 10:31
  tired of it a little resentful
• 10:33
  a little like oh my god
• 10:34
  leave me alone
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  and so the Caring Bridge is a great thing
• 10:39
  you can put all that in a caring bridge
• 10:40
  and send it out to everybody
• 10:42
  but one of the other things
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  I think is to find somebody close to you
• 10:45
  and maybe not your caregiver
• 10:47
  maybe a friend a family member
• 10:50
  somebody from your church or an organization
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  somebody that's a great organizer
• 10:55
  because I caution putting this on your caregiver
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  because that's just another job for a caregiver
• 11:03
  and that's hard too
• 11:04
  because it's not just us you know
• 11:07
  whatever we're going through
• 11:08
  is affecting our entire family
• 11:09
  and when we can't do much
• 11:12
  we're give automatically moving stuff to our caregiver
• 11:15
  so now they've got to take over what we're doing
• 11:17
  plus they gotta worry about us
• 11:20
  plus they got all their other stuff to do
• 11:22
  and so giving a caretaker one more thing
• 11:25
  is sometimes too much
• 11:27
  so find a trusted person who's a good organizer
• 11:30
  who can be your contact person
• 11:34
  who can say you know
• 11:36
  um
• 11:38
  if you want to visit sign up here
• 11:39
  and we'll give you a time and a day that works for you
• 11:42
  that you can visit for 10 minutes
• 11:44
  you know limit it 10 minutes
• 11:46
  you know and um
• 11:47
  I know people say well
• 11:49
  we need meals drop off a meal
• 11:51
  but then people want to come in and sit and chat
• 11:53
  please don't you know
• 11:55
  be honest with your friends
• 11:57
  if you drop off a meal please just drop it off
• 11:59
  I'm not up to seeing you I miss you
• 12:01
  I love you would love to talk
• 12:03
  but I just can't right now
• 12:05
  and I think if you're honest with people
• 12:07
  they'll understand they don't take it so personally
• 12:10
  but the meal train is great for that
• 12:12
  except that they have to drop it off
• 12:14
  if you don't want meals
• 12:15
  and this is a big thing if you have a particular diet
• 12:20
  or you're particular like I am
• 12:23
  I really don't want people cooking for me
• 12:25
  I'm sorry love you
• 12:27
  please don't cook for me
• 12:28
  because there's a very good chance what you bring me
• 12:30
  I will not eat and I'm sorry
• 12:32
  and that makes me feel like a bad person
• 12:34
  but I don't want your grandma's favorite
• 12:38
  favorite chicken and rice casserole
• 12:40
  I will not eat it don't waste your time
• 12:43
  your money and food bringing me something I don't like
• 12:46
  and that's a hard thing to tell people
• 12:49
  and
• 12:49
  I've really only been speaking up about my food issues
• 12:53
  the last I don't know
• 12:54
  maybe five six years
• 12:56
  where I just tell people I don't eat that
• 12:58
  and they sometimes they get offended
• 13:00
  you don't eat that no
• 13:02
  I don't I don't eat ketchup
• 13:03
  I don't want ketchup
• 13:04
  please don't put ketchup on my stuff
• 13:06
  and it's okay to
• 13:08
  not to say how you want your food to eat
• 13:11
  you shouldn't have to eat food that people
• 13:14
  force on you maybe it's a good word
• 13:16
  so it's okay I definitely agree with this
• 13:20
  so um
• 13:21
  we had people bring us meals
• 13:23
  like when the babies were born um
• 13:25
  and I admit that I threw some of the meals away because
• 13:30
  and I'm not a picky eater
• 13:31
  but don't bring me stew I'm not gonna eat stew
• 13:33
  somebody brought me stew and I was like
• 13:36
  that's in the trash I can't eat
• 13:37
  I cannot eat stew and somebody else brought us like
• 13:42
  slices of ham but they froze it
• 13:44
  so it was like frozen
• 13:45
  cooked ham and I was
• 13:47
  and then it was like defrost this and then like
• 13:50
  cook it like
• 13:50
  even though it was cooked
• 13:51
  it was like we were supposed to defrost it and
• 13:53
  I don't know do something to it
• 13:54
  um and I also threw that away
• 13:57
  I said no one is gonna eat your frozen ham or stew
• 14:01
  that's just and a lot of people love stew
• 14:02
  and that's great but that's not something I enjoy
• 14:05
  so you know
• 14:05
  we all have things we like and things we don't like
• 14:07
  and you know
• 14:09
  like you said
• 14:09
  if it's someone's favorite chicken and rice casserole
• 14:12
  I don't eat rice so I'm not gonna eat that
• 14:14
  cause I don't eat rice and everyone's going
• 14:16
  oh my gosh yes
• 14:18
  I know everyone loves rice except me
• 14:20
  I'm the only person in the world that doesn't like rice
• 14:21
  I know
• 14:23
  well I don't hate it as much as you do
• 14:25
  but it's not my favorite
• 14:26
  I don't want any kind of a rice casserole
• 14:28
  don't bring me anything with rice
• 14:30
  but honestly just don't bring me food
• 14:32
  let me do my own food so
• 14:34
  maybe ask for Doordash
• 14:36
  or some kind of gift card or something
• 14:38
  that something can be delivered
• 14:40
  that you can order for what you like
• 14:41
  but also let people know I can't
• 14:45
  this is probably more on the metastatic side
• 14:47
  but I do know that when I was
• 14:49
  when I first had my plaque
• 14:50
  there was a lot of things I couldn't eat
• 14:52
  my stomach was upset you know
• 14:54
  they they give you pain meds
• 14:55
  and you take them and it upsets your stomach
• 14:57
  and there was just stuff I could not eat
• 14:59
  luckily my husband at the time ate anything so
• 15:02
  you know him and my son ate the food
• 15:04
  I did not eat any of it
• 15:06
  my husband at the time
• 15:08
  was perfectly capable of fixing food for himself
• 15:10
  so we didn't need food he could have made his own meal
• 15:13
  he was perfectly capable and self sufficient and
• 15:18
  sometimes it's just that's what all people know
• 15:20
  oh well
• 15:22
  Aunt Jenny had the best chicken noodle soup
• 15:24
  and it cures everything
• 15:26
  and they bring you Aunt Jenny's chicken noodle soup
• 15:28
  and you're like I'm not eating that
• 15:30
  you know and there's a whole
• 15:32
  another side of this that I'm just gonna talk about
• 15:36
  because this is a real thing
• 15:38
  I have a real problem eating food from somebody
• 15:40
  I don't know I just don't know them
• 15:43
  I don't know their sanitation issues
• 15:45
  I don't want their dog hair
• 15:46
  cat hair in my food
• 15:48
  I don't know if their cat hangs out on their counter
• 15:51
  and maybe I'm a little weird about that
• 15:55
  but if I don't know you
• 15:56
  I really don't want you cooking for me
• 15:58
  please don't
• 15:59
  because it kind of creeps me out a little bit
• 16:02
  you know yeah
• 16:03
  and you're not the only person I've
• 16:05
  I've heard a lot of people say that
• 16:06
  so I do think this is a thing
• 16:08
  so if if you're listening and you're saying
• 16:10
  oh man
• 16:10
  I bring people food like
• 16:12
  we're not trying to offend anybody
• 16:14
  because there are some amazing cooks
• 16:15
  and I I bring people meals a lot
• 16:17
  like if they need
• 16:18
  actually not so much anymore
• 16:19
  used to they're used
• 16:21
  I guess when I was younger and everyone was having kids
• 16:24
  it was more of a thing now that I'm older I
• 16:26
  I haven't had to bring anyone a meal in
• 16:27
  a very long time but I
• 16:28
  I used to do it a lot um
• 16:30
  and I was always happy to do it
• 16:31
  and I think it is a way to show support
• 16:34
  when you can't do anything else
• 16:36
  that's like
• 16:36
  the one thing you can do so um
• 16:39
  but yeah
• 16:39
  just just ask
• 16:41
  but we're really talking about the patient side
• 16:43
  how to tell somebody if you don't want it
• 16:45
  so if you do want meals and you're like
• 16:47
  you guys are crazy I'll eat anything
• 16:49
  disregard what we just said
• 16:50
  that's awesome but if you're
• 16:52
  if you're who we're talking to right now
• 16:55
  is the person who's going
• 16:56
  I don't know how to tell them
• 16:57
  I don't want their food
• 16:59
  know that you're not alone
• 17:00
  there's a whole community of people out there
• 17:02
  that don't eat out of other people's homes
• 17:04
  they don't or they're very picky
• 17:06
  or especially in a patient community
• 17:09
  they have dietary restrictions
• 17:11
  if you really can't eat gluten
• 17:14
  sometimes you can't trust people
• 17:16
  even though they say it's gluten free
• 17:17
  but they use brown sugar
• 17:18
  that they store a piece of bread in the brown sugar
• 17:20
  that's gluten contaminated
• 17:21
  so they might tell you oh
• 17:22
  I made these cookies gluten free
• 17:25
  but they didn't pay attention
• 17:26
  to the fact
• 17:26
  that there's a piece of bread in their brown sugar
• 17:28
  and now it's not gluten free anymore
• 17:30
  so you do have to be very careful
• 17:32
  eating out of someone else's home
• 17:34
  if you have dietary restrictions and
• 17:37
  and it's not that they don't mean well
• 17:38
  and they didn't try maybe they just didn't realize
• 17:41
  so we're really just talking to the patients
• 17:43
  who are identifying with you know yes
• 17:46
  I don't want someone else's food
• 17:47
  if you love someone else's food
• 17:49
  that's fantastic tell them
• 17:50
  bring on the meal train
• 17:51
  and if bringing food is a way that you show love
• 17:55
  just know that sometimes it might be thrown away
• 17:57
  and sometimes it might not
• 17:58
  and if you're willing to take that gamble
• 17:59
  go for it I always find no one throws cookies away
• 18:02
  so you could always just bring them a plate of cookies
• 18:04
  and a and a Doordash gift card
• 18:06
  there you go but here's the thing
• 18:08
  I think I think driving at home is that
• 18:11
  that if you are going to put out a meal train
• 18:14
  put on there what you will and won't eat
• 18:17
  be specific I mean here's here's
• 18:19
  I think where patients fail every time
• 18:23
  is by not being afraid to be specific
• 18:26
  not being afraid to set the boundaries
• 18:28
  yes you can bring me a meal
• 18:29
  but these are the meals that we can eat
• 18:31
  or please don't bring me a meal right now
• 18:33
  because I'm not able to eat
• 18:36
  you know or if you bring a meal
• 18:38
  just bring it for my my children or
• 18:42
  you know something like that
• 18:43
  you know be specific
• 18:45
  the less we tell people
• 18:47
  the more they're gonna overstep our boundaries
• 18:49
  and then we're gonna feel bad about that
• 18:51
  and then
• 18:52
  we're going to do more than what we should be doing
• 18:54
  because we're trying to please the friends
• 18:56
  it just it's all goes back to communication
• 18:59
  communicate your needs communicate your wants
• 19:02
  communicate your don't wants
• 19:04
  your don't wants are great
• 19:05
  and if your friends are offended when you say
• 19:07
  I do not want your advice
• 19:10
  I'm sorry they're offended
• 19:12
  but you have a right to say
• 19:14
  please don't give me advice
• 19:15
  please try to say it in a nice way
• 19:17
  but you know
• 19:18
  it's okay to say
• 19:19
  I know your friend Sally had breast cancer
• 19:22
  but this isn't breast cancer
• 19:23
  and it's just not the same
• 19:24
  so let's not talk about that
• 19:26
  and it's okay but
• 19:27
  you know you gotta say it in a nice way
• 19:29
  so that you don't offend them
• 19:30
  cause they don't know you know they
• 19:32
  they don't know
• 19:32
  any more than you knew before you were diagnosed
• 19:35
  I think we forget about that
• 19:37
  we forget about how we felt
• 19:39
  because I can guarantee just about every one of us
• 19:42
  have done all the things that I'm saying
• 19:44
  don't do me included
• 19:46
  and I still do it and I know better
• 19:48
  but I still do it because it's a
• 19:51
  it's a habit
• 19:52
  and we have to figure out how to break that cycle
• 19:54
  and that habit of pushing ourselves on people because
• 19:58
  you know I'm getting better
• 19:59
  but then people are like well
• 20:01
  have you heard from so and so
• 20:03
  how they're doing I said no
• 20:04
  I haven't reached out you haven't
• 20:06
  it's like well
• 20:06
  they need some space you know we
• 20:09
  we can't all be bombarding these people
• 20:11
  and asking them how they're doing
• 20:12
  because it's just too much
• 20:14
  and it's okay to just send a message every
• 20:18
  maybe once a week not every day
• 20:20
  you know
• 20:20
  tell your friends I would love to hear from you
• 20:23
  but could you just once a week
• 20:24
  not once a day or not five times a day
• 20:26
  or whatever it is that's going on
• 20:29
  you have to set those boundaries
• 20:30
  you have to communicate effectively
• 20:33
  yeah
• 20:34
  and you can always put your phone on do not disturb
• 20:37
  and set it to where your um
• 20:39
  people you choose come through and no one else does
• 20:42
  so like
• 20:42
  mine is set to only a handful of people come through
• 20:45
  if I'm on do not disturb like my kids
• 20:47
  my husband of course melody
• 20:50
  um there's a hand
• 20:51
  there's a handful of people
• 20:52
  that'll get past my do not disturb
• 20:54
  so if I put it on
• 20:55
  I know that no one else is gonna bug me
• 20:57
  so you can always do stuff like that
• 20:59
  where if you're afraid to go completely dark you
• 21:01
  you know your
• 21:02
  your mom needs to get a hold of you or she'll worry
• 21:04
  those situations
• 21:06
  have those people bypass the do not disturb
• 21:08
  but nobody else and then
• 21:09
  that'll at least give you a little bit of peace
• 21:11
  that those texts going off
• 21:13
  aren't waking you up every five minutes
• 21:16
  that's the worst when you just finally start sleeping
• 21:18
  and somebody calls you or text you
• 21:21
  you're like I was just asleep
• 21:23
  and then you can you can also snooze certain texts
• 21:26
  I don't know if everyone knows that
• 21:27
  but if you have like
• 21:28
  a group text and once they start talking to each other
• 21:31
  it just goes and goes and goes and goes
• 21:33
  you can snooze just that text
• 21:34
  so you're technically not on do not disturb
• 21:36
  everyone can get a hold of you
• 21:38
  but that one you'll see that there's a notification
• 21:40
  but it won't ding so you can also do
• 21:43
  there's a lot of things like that
• 21:45
  that maybe people don't know they can do
• 21:46
  but there is a lot you can do
• 21:50
  yeah and
• 21:50
  somebody asked us to create a list of do's and don'ts
• 21:54
  to give to friends and family
• 21:55
  and I said that's a tough one
• 21:57
  because what you don't want
• 22:00
  somebody else does want
• 22:02
  so how do you know how do you know what to do
• 22:06
  you know if I say
• 22:07
  like me sitting here saying
• 22:08
  don't bring me food and now everybody's like
• 22:10
  oh my god
• 22:11
  I shouldn't bring food I'm not saying that
• 22:13
  I'm just saying for my situation
• 22:15
  I don't it doesn't work for me
• 22:17
  but for another person they'll eat anything
• 22:19
  they love it do that
• 22:20
  but I think patient a patient um
• 22:24
  that's in a situation where they're needing assistance
• 22:28
  needs to communicate what they want
• 22:29
  and then somebody who's
• 22:31
  might be watching this that is wanting to help
• 22:34
  they need to communicate and say
• 22:36
  I would love to bring you a meal
• 22:38
  here's three things I make really well
• 22:40
  are any of those something that you're interested in
• 22:42
  there's nothing wrong with that
• 22:44
  you know chicken and rice casserole
• 22:46
  no thank you
• 22:47
  but you know what that spaghetti sounds amazing
• 22:49
  you know I
• 22:50
  I think it it's just a way of communicating
• 22:52
  you know can you give me an idea of
• 22:54
  of some of the things you would like to bring
• 22:56
  and
• 22:56
  let me check and see with the family if they'll eat it
• 22:59
  I'm I don't think that's
• 23:00
  I don't think that that's rude or inappropriate
• 23:03
  because otherwise everybody starts feeling bad
• 23:07
  you know there's nothing worse
• 23:09
  and this has happened to me
• 23:10
  somebody brings you something to eat
• 23:12
  and then a week later they say
• 23:13
  how did you like it and then you have to lie
• 23:18
  it makes you feel bad because you're like
• 23:20
  oh it was so good
• 23:21
  thank you so much and you didn't see
• 23:22
  you didn't eat it you threw it away
• 23:24
  or it was bad or you didn't like it
• 23:26
  you know how do you
• 23:28
  oh it just it
• 23:29
  it opens up all kinds of weird weirdness
• 23:31
  and so communicate effectively will stop the weirdness
• 23:35
  I think
• 23:37
  yeah that
• 23:38
  that's a really good point
• 23:40
  okay so besides the things we've mentioned
• 23:43
  are there any other tools
• 23:46
  things people can do use that you know of
• 23:52
  well I'm gonna say this again
• 23:54
  many times I say it
• 23:55
  talk to a social worker at your hospital
• 23:58
  social workers are amazing
• 24:00
  if you don't have a strong community of friends
• 24:04
  to do all the things that we're just talking about
• 24:06
  and you are alone social workers
• 24:10
  if you need help organizing you
• 24:12
  these social workers have this wealth of information
• 24:15
  and don't be afraid to ask for one
• 24:18
  if you're in the hospital for something
• 24:20
  ask for a social worker at the hospital
• 24:22
  if you're going to see a doctor for something else
• 24:25
  ask for a social worker there
• 24:27
  they want to help that's their job
• 24:29
  and so it's okay to ask for one and say
• 24:32
  I really am struggling
• 24:33
  I need a social worker to kind of
• 24:34
  help me figure some stuff out
• 24:36
  because we've been talking about
• 24:37
  people that have a very big network
• 24:39
  but there's a lot of people that don't
• 24:41
  you know when I
• 24:42
  I moved to Edenton I didn't know a soul
• 24:44
  luckily I haven't had any big health issues here
• 24:47
  but had I had a health issue
• 24:48
  I would have been alone and not had had anybody to help
• 24:51
  you're too far away Jeff was too far away
• 24:53
  I was just here by myself
• 24:55
  so if you're in that sort of a situation
• 24:57
  where you don't have a good support system
• 25:00
  social workers are amazing
• 25:02
  and they're also amazing at giving you tools
• 25:04
  to help sort things out and to how to talk to people
• 25:07
  yeah and I think that's one of those things that until
• 25:09
  you know a social worker is an option
• 25:12
  you would never know it was an option
• 25:13
  like it's not like
• 25:14
  everyone just knows that
• 25:15
  the hospital has social workers
• 25:17
  I always thought of social workers as like
• 25:19
  for foster children and like
• 25:21
  you know domestic issues
• 25:23
  not health so I would have never
• 25:26
  in a million years
• 25:26
  known that that was an option until I knew about it
• 25:29
  so I I think that is a really good one to point out
• 25:33
  and if you know of anyone who's new to a diagnosis
• 25:36
  you know
• 25:36
  maybe bring it up to them in case they don't know
• 25:39
  but it it is
• 25:40
  it is huge a huge resource
• 25:43
  and also the American Cancer Society has some resources
• 25:46
  that are nationwide if you need a ride to a doctor
• 25:50
  they have a lot not every city has them
• 25:52
  but a lot of the cities larger cities
• 25:55
  have volunteers that will pick you up
• 25:56
  and take you to doctor's appointments
• 25:59
  they have all kinds of resources
• 26:01
  that are available for anybody with cancer
• 26:04
  there's also cancer community
• 26:06
  that has a lot of resources like that
• 26:08
  that are community based
• 26:10
  so if you need help within your community
• 26:13
  those are good resources as well
• 26:15
  yeah definitely
• 26:16
  um and
• 26:17
  you know local churches too
• 26:19
  even if you're not a member
• 26:21
  if you reach out to a church
• 26:22
  and tell them that you're struggling
• 26:24
  and what you need they will most likely help you too
• 26:27
  yeah most definitely
• 26:29
  um there's also a lot of clubs um
• 26:32
  that do a lot of helping like
• 26:36
  building ramps wheelchair ramps
• 26:38
  there's there's churches do that
• 26:40
  the um
• 26:41
  Rotary Club does it Rotarians are out here
• 26:45
  um the optimist clubs
• 26:47
  I mean you just reach out to clubs uh
• 26:49
  Lions Club and say hey
• 26:51
  I'm struggling this is what I need help with
• 26:53
  do you know anybody if they can't help you
• 26:55
  they'll refer you
• 26:56
  I get calls all the time for people that we can't help
• 27:00
  and I refer them to other organizations
• 27:02
  like the Lions Club check out your local United Way
• 27:05
  you know these are all things
• 27:07
  places that have good resources that they can help you
• 27:10
  but use the resources that are out there
• 27:12
  don't be afraid to ask
• 27:13
  because that's what they're set up for
• 27:16
  exactly great point
• 27:18
  great point just like we said before
• 27:20
  advocate for yourself
• 27:22
  that's a big one
• 27:24
  yeah if you're struggling with telling
• 27:26
  with boundaries
• 27:28
  and again I
• 27:32
  I caution about putting it on your caregiver
• 27:34
  because that's hard
• 27:35
  but what if you don't have a caregiver
• 27:37
  okay that is a situation
• 27:38
  where a lot of people don't have a caregiver
• 27:40
  a social worker can help but also
• 27:42
  find a friend who's pretty strong willed
• 27:44
  and very organized and
• 27:45
  and put it on them they will usually take it
• 27:48
  if you reach out and say
• 27:49
  I need somebody to help me organize this
• 27:51
  and to help coordinate
• 27:53
  you'd be surprised at how many of your friends
• 27:55
  will step up and really help you
• 27:57
  yeah and you'll probably find a few that want to do it
• 28:01
  that are like yes I
• 28:02
  I need to do something let me do this
• 28:05
  yep yeah
• 28:06
  and if if you want them to
• 28:09
  if you know them and they're in your circle
• 28:11
  and you want them to come clean your house great
• 28:13
  but there's nothing wrong with asking for help
• 28:15
  with those services laundry services
• 28:19
  house cleaning services um
• 28:21
  I do caution though
• 28:22
  to be careful about the appearances out there
• 28:24
  because sometimes you're gonna get a lot of pushback
• 28:27
  cause people say well
• 28:28
  there's nothing wrong with you
• 28:28
  you can do that but if you're struggling
• 28:31
  if you're a single single mom
• 28:33
  single dad you got children
• 28:35
  you're trying to manage your own care
• 28:37
  you gotta figure out how to make all this stuff work
• 28:39
  and it's hard it's exhausting
• 28:41
  you know we talk a lot about couples
• 28:43
  or people that have caregivers
• 28:44
  but what about those that don't
• 28:46
  I went a very long time without a caregiver
• 28:49
  and I was a caregiver for my mom
• 28:51
  so I didn't have a support system
• 28:54
  because I was her support system
• 28:57
  and I didn't have anybody
• 28:58
  I didn't have a husband to to be a caregiver
• 29:01
  so I had to figure it out all on my own
• 29:03
  and there's a lot of people like that
• 29:05
  that have situations where they don't have a caregiver
• 29:08
  and they want one but they don't have one
• 29:10
  if you have a friend that needs a caregiver
• 29:12
  step up and say let me help you if you're
• 29:15
  if you're able
• 29:16
  yeah that's a great message
• 29:19
  um okay
• 29:20
  what what else would you like to talk about
• 29:23
  I think that's just about it
• 29:25
  just make sure that you advocate for yourself
• 29:27
  and that you set boundaries respectfully
• 29:30
  don't be rude um
• 29:31
  don't let other people be rude
• 29:32
  don't let people push you around
• 29:33
  cause there's a lot of strong little people out there
• 29:35
  who be like well
• 29:36
  this chicken soup will heal you
• 29:37
  you just gotta eat it you know
• 29:39
  no and it's okay to say
• 29:41
  I'm sorry I don't like chicken soup
• 29:43
  thank you very much but no
• 29:44
  um it's hard
• 29:45
  but you when you practice it
• 29:48
  it gets easier and just
• 29:50
  just keep doing it and it will get easier
• 29:52
  and then um
• 29:53
  it comes out second nature for you to say
• 29:55
  I'm sorry no
• 29:57
  thank you I can't today
• 29:59
  maybe tomorrow
• 30:01
  yeah and going back to what you said
• 30:03
  about not wanting advice
• 30:05
  because your friend had breast cancer or whatever
• 30:07
  I think it's also worth mentioning
• 30:09
  I'm sure everyone's getting sent tons of reels
• 30:12
  or videos on um
• 30:15
  miracle cures coffee enemas and um
• 30:19
  apricot seeds and how many
• 30:22
  how many have you seen if you're watching or listening
• 30:25
  please leave us a comment
• 30:26
  and let us know how many you have gotten
• 30:28
  and what is the craziest one
• 30:31
  um because I know
• 30:32
  I know there's a lot and so
• 30:34
  you know that's also part of it too
• 30:36
  is it might not just be advice of oh
• 30:38
  my friend had this it might be
• 30:41
  I send you five reels every single day
• 30:43
  with amazing cure alls and you should be cured
• 30:45
  by now because I told you to eat an apricot seed
• 30:49
  that's also you know
• 30:51
  a place to set a boundary and say
• 30:53
  please no more videos
• 30:54
  I just can't watch them
• 30:55
  and they don't apply to my cancer
• 30:57
  it's different kinds of cancer
• 30:58
  you know the things that you could say
• 31:00
  to maybe detour them from sending you
• 31:03
  or just flat out say listen
• 31:05
  I'm not watching anymore so please stop sending
• 31:07
  and then mute them
• 31:08
  so that those messages just build up
• 31:11
  and they don't alert you yeah it
• 31:15
  you know cause people are trying to do what good
• 31:19
  but they don't understand that
• 31:20
  they're just really misguided and it's not
• 31:22
  what they're doing is not helpful
• 31:25
  yeah they wanna help
• 31:27
  yeah they do wanna help
• 31:28
  but it's not always helpful
• 31:30
  there's a lot of stuff out there
• 31:31
  that is just not helpful and
• 31:35
  people will do it to you
• 31:37
  but check yourself that you're not doing it to others
• 31:40
  because that happens you know
• 31:41
  we think oh
• 31:43
  we have ocular melanoma we know exactly how you feel
• 31:45
  well we don't
• 31:46
  you know we all process things differently
• 31:48
  so it's not um it's not like that
• 31:52
  alright everyone
• 31:53
  we're gonna leave you here for this episode
• 31:56
  but please let us know
• 31:57
  what kind of boundaries have you set
• 31:59
  how did it go did you find something
• 32:02
  that you could say that worked really well
• 32:04
  are you still struggling do you have questions
• 32:06
  drop those in the comments
• 32:08
  and um
• 32:09
  go check out our website ACureInSight.org
• 32:11
  you can sign up for our newsletter
• 32:14
  um use our resources
• 32:17
  there's a physician finder
• 32:18
  you can join our Tuesday Night Zoom group at seven PM
• 32:21
  Eastern all kinds of great stuff
• 32:24
  sign up for the registry if you have a biopsy coming up
• 32:28
  please consider donating to the Biobank
• 32:31
  and hopefully
• 32:32
  we'll see you in October for the patient meeting
• 32:35
  Eye Believe it's October 2nd and 3rd in Dallas this year
• 32:38
  we'd love to see you there
• 32:40
  check out the 5 K's we have um
• 32:42
  a few more this year so check those out
• 32:44
  and hopefully we will see you soon at an event
• 32:46
  we would look forward to that
• 32:48
  we hope you guys have a wonderful week
• 32:50
  and we will see you next time