Hi, I'm Lauren Adams, a clinical program manager at the
department of Social Work here at MD Anderson Cancer
Center. Today I'm joined by my esteemed colleague, Cindy
Parker, a social work counselor here at MD Anderson.
And this is the Cancerwise Podcast.
Welcome, Cindy, thanks for joining me today.
Hey, Lauren, thank you.
So, we've got a great topic to talk about today.
How to support someone facing cancer, whether they're a
patient, a caregiver, a survivor.
This is definitely a question that we get asked a lot, so
I'm excited to be with you to talk about this here today.
We'll talk through what things are helpful to say and maybe
some things that are not quite as helpful when you're
talking to someone impacted by cancer, whether they're a
loved one, a family member, a friend, or even a coworker.
So, let's jump right in and let's address the elephant in
the room of cancer. I think it's safe to say that most
people really wanna support a loved one who's
dealing with cancer and they really wanna help it.
But for some reason, it just feels so awkward and so hard.
So, what is it that you think makes it so challenging to
talk about this?
Right. I think it is so awkward and so hard because
it's not something that's universal.
Not everybody has cancer or able to identify with it.
And it can be difficult to know exactly what to say,
you know, like what will be able to
help this person or my loved one.
It's almost like, what if I say the wrong thing and make it
worse.
Absolutely, absolutely. That's always a thought in the back
of your mind, I'm sure.
And I think, you know, when it comes with cancer, like we
see it a lot on the media, we see a lot of it on TV, you
hear a lot about it. So, just in general, it brings up a
lot of emotions and kind of a lot fears and maybe it can be
hard to kind of deal with that when you're also listening
to somebody else about it.
Yeah, I think when you talk to somebody who has cancer,
and who's experiencing it, yeah, sometimes it may be
portrayed differently, and so you don't know
the quote unquote right thing to say.
I think that's probably one of the biggest things that
people think is I'm gonna say the wrong thing and then it's
all gonna just collapse, right?
One thing I'll tell people is kind of to let them take the
lead, like the patient, because sometimes they don't have
that space. Some people do not have the space and the place
where they have the opportunity to talk about cancer,
because it is awkward and people avoid it a lot.
And so, sometimes people would, "Please, I just need
someone to sit with me, hear about it, let me complain
and just like give me the space to not be OK."
But then also, sometimes people are saying, my appointments
all day long, like my life revolves around cancer.
Like, please just tell me about your kids.
What movies have you seen lately?
So, just like letting them lead, like is this the time to
talk about cancer? Is this a time to just talk about the
normal things we would do without cancer.
Absolutely. I love that.
Yeah, let them take the lead.
And it's not even about saying the right thing.
Like you said, like sometimes it's just like, let me listen
for a while, like vent or cry
or laugh or do whatever you need to do.
And let me just hold this space for you.
That's huge.
Totally.
Yeah.
So, if someone's maybe thinking through, "All right, I'm
ready. I wanna hold space.
I wanna be here for you." What are maybe
some things that you could suggest to people to do
something that's genuinely helpful in giving
the support that they desperately want to give?
Right, I think for a lot of times,
a lot folks, they don't know the words to say, like we were
just talking about, but they have the actions to show it,
you know. So, they can go and say, "Let
me do this job that you need done." Whether it
be, you know, laundry or washing dishes or
picking up your kids from school.
And just those, even those acts of service can mean so
much.
Yeah, and those are big things, too, that I think, you
know, sometimes people don't just think about the
logistical challenges that patients experience when they're
going through cancer. And I'm saying patients, but too,
it's, you know, people who are going through treatment,
people who have completed treatment, and even caregivers.
Exactly.
There's just so much going on, and cancer is just taking so
much of your life that all the other pieces of your live
fall to the side, and that's such a good point of like,
what can I take off of your plate?
Right. Right.
And I think some of it depends on who this person is to
you, right? Like if it's a co-worker like please do not go
into their house and do their laundry.
Don't touch yes Yes, be mindful of that.
But maybe like what is it that I can do?
Sometimes, too, it's just saying it, right?
Yes.
What if it is a coworker, somebody that you work with like,
"Hey, you need, I know you're taking PTO.
Is there anything I can take off of your plate?"
Right. Absolutely.
Right. Like if it was a close friend, if you live with a
person, laundry, right?
Right.
And if it's a close friend, someone you're really close
with emotionally, they're keeping you up to date, sometimes
taking on some of those tasks of just
delegating and giving out the information because it's
almost a full-time job.
Absolutely.
Just like letting people know what's going on, what's
the diagnosis, what is going on now.
And it's hard to keep repeating that.
Yeah.
Because it's so difficult to just like, like be a
record player and just repeat the same, the same thing that
you that you've talked about. So, yes, I think having that
that person or that designated outlet to
just kind of do a drop of everything
that's going on so you don't to keep repeat yourself is
really helpful and it's very it's a
it's way to take things into your own control as well, like
I'm gonna put this in my court now and tell everyone
how I'm doing on my own terms, yeah.
Yeah. What other things could you maybe do? Like are there
maybe gifts or things that you hear from patients that they
find to be really helpful for them when they're going
through treatment?
Yes. In fact, so, as you know, I work with
the Adolescent Young Adult Clinic, which you are also very
familiar with, the AYA Clinic, and it's wonderful
to work with that team and the patients.
And we always hear no coloring books, right?
Coloring books.
Coloring books, that seems to be-
The controversial coloring books.
Who da thunk.
But yeah, maybe no
coloring books, or at least see if they have one.
You know, I think one is sufficient.
I know for a lot of folks, that's
the time to start a new hobby.
I hear so many patients, young adult patients, talk
about crocheting and knitting, and I'm like, this is
fantastic.
I don't know the difference, but I'm sure it's amazing.
And playing games or video games are also really big.
So, just kind of whatever thoughtful gift
looks like to them maybe consume their mind with something
other than cancer, other than their diagnosis.
So something thoughtful and meaningful like related to
them, their interests, their passion, the context
of their life where they maybe need something to fill their
time that's not as expending as much energy as maybe in the
past. And what about for someone who maybe wants to give a
little bit more of a practical gift? Like they know this
person is struggling to pay the bills.
They know this person has a lot of logistical
challenges going on in their lives.
What kind of things could they give that would actually
be helpful and actually be used?
I think for a lot of folks, even
something as easy as ride share, that's really important
for a lotta folks getting rides to and from appointments.
So, maybe like ride share and then a gift card.
Also, lots of places deliver groceries.
So, things like that that might be
helpful for everyday activities, you know?
That's a good point, too. So, I mean, definitely a gift
card to a local grocery store is a good idea, but yeah,
they do deliver so you could even take on kind of that
mental load depending on the relationship and kind of
order something recurring or, you know, when you're
ordering your groceries kind of do that for them so it can
be delivered to them.
Yeah, you can do that from anywhere, actually.
Right. I think it's just a thoughtful, a thoughtful,
meaningful type of gesture that really goes a long
way and it takes something off, off their plate, off the
patient's plate or the caregiver's plate.
Yeah.
You know, they, they're consumed with so much and the last
thing they want to think about is, "Oh I got to get
groceries."
And even finding someone to do those things is a challenge.
That takes mental energy to say, let me
now find someone to do these tasks for me.
So, if you can offer, say, "I can do this.
I can do that. When is a good time to do this?
Is it more helpful to do A or B?"
Right, exactly.
That takes away just that mental load.
So, it's almost like two gifts in one.
You're taking off that mental load and then you're doing
something for them.
I think, too, one thing that's been mentioned to me, this
is, I just came to mind, but like
letters, you know?
Like just simple gestures that we forget about,
you know, saying, "Oh, I'm thinking of you." Things of that
nature that can really, again, mean so much and be so
impactful. Just those simple gestures of I'm thinking
about you, I am here.
The lost art of letters,.
Right.
But texting is a good idea, and you know that reminds me.
I've had a lot of patients talk about, um, just
you don't have that emotional energy when you're going
through it. If you're a patient in the midst of it or if
you're caregiver who's doing a million things each day,
right? And so, on the one hand you need a lot support,
on the other hand you don't have time for conversation.
Some patients just say such how huge of that support
it is to someone reach out to them, just checking in and
making it clear, like, "Hey, you know, I just want to let
you know I'm thinking about you.
I know you had that surgery coming up.
Please do not at all feel compelled to respond.
I just wanna know I am thinking of you, you know, hope
things go well." Or even just, "Hey, you know,
here's a funny thing I saw today.
I know you're busy. I know can't reply, but this made me
smile. I hope it makes you smile." Because then you're
giving them that support that they need.
And there's not that emotional need
of I need to now like respond.
I need say thank you, which, on the one hand,
patients say, like patients and caregivers say, "I
appreciate the support, but I do not in this moment have
the emotional energy to say 'thank you for this' or
'everything's going well.'" You know, so just knowing that
this support is a one-way thing, I'm giving you the
support. I do expect anything back can be
just so helpful for the patients.
I agree a hundred percent.
I think I think just that that being mindful through
all of that is is just huge.
What are other things you can say that's helpful to kind of
show that support when you're talking to somebody who has
cancer. What is the right things to say, or things that are
helpful to say?
Right. The right things to say.
I think validation is huge when you are
speaking with someone and you hear what they're saying
you're able to say, "That is valid." Right?Whether
it's sadness or it's anger or
it's joy, validate those feelings.
We're all human regardless of what we're going through
or what our health looks like, so.
But to be able to to respond to
somebody and say, "That makes sense that she would feel
angry or happy about that."
Right? And just validating and listening again, going back
to listening, sometimes it's not about saying
the right things, but just doing the right things,
quote unquote, right things which may be just listening.
Yeah, listening and holding space.
And patients talk so much about that.
And it's just interesting, you know, we talk about
validation, holding space, sitting with someone and being
with them in that moment.
And just, I think a lot of people, they really wanna help.
And when you think about helping, you think that a grand
gesture, I'm taking you to these appointments.
I'm doing all these wonderful things.
And it doesn't feel like just sitting there with them
is so helpful, but that is the thing.
Cancer patients, patients, survivors, caregivers, and just
people in general say that is missing.
There's not a lot of times in general that
you have someone who's just willing to sit there with you
and acknowledge, like, this sucks.
This is hard, and it's okay to feel that way, and we can
feel it together. I think, you know, we have a tendency
because we love people and we care about people.
I wanna make you feel better. If you're feeling sad, I
wanna make you happy. If you are angry, you don't need to
feel angry. But just letting you them feel that way
and knowing that it's okay to feel that and kind of working
through it. I'm here to support you working through.
Right.
It just seems, you know, so small but really makes such
a huge, huge impact So, I love that the validation, I
would agree. That's probably one of the top things that you
can do, and you can do that anywhere on the phone, text,
in-person, face-to-face.
I think also allowing, Lauren, like you said,
just holding that space for them, but allow this to
be their time, right?
I think sometimes we get in the
space where it's like, "Oh, okay, well,
my instance might be a little worse," just to make you feel
better or something. You know, you compare those instances
and you're like, "Well, I'm gonna one up you."
But I think that a lot of times it is sincere to
just let it be their time and to let them focus
on what they need to focus on.
Yeah. I think we all do that from time to time, right?
It's almost like an instinct to try to connect, but you're
right It doesn't always feel like connecting in that
moment.
Right. Right.
Because all experiences with everyone's cancer is
different. You could have somebody who has the same
diagnosis at the same age the same treatment, and
their experience is totally different.
So, it's just such a good point to let it be their story
and hear from them.
Like what is your experience specifically?
Right. Right. Absolutely.
Let it be their story.
I like that. That's good.
I think people, again, they really want to help but
sometimes it's easy to want to take
away the pain or take the problem.
Yeah.
Kind of that problem-solving. So, I think that's the
instinct that many of us have in general is to kind of
solve the problem or make it better.
And so, the emotional piece is so
helpful. Finding a balance, I think, can be so important,
too, right? You want to be able to give that emotional
support. You want to be there for them. You want let them
cry if they need to cry.
And also, you know, if you have the time to take them to an
appointment and they don't have a ride, that's valid too.
You don't want to be listening to someone, you know, who
needs help and not helping them.
And so for that, I usually just say, like, you can ask.
You can ask, absolutely.
Yeah.
You can just say like, "Man, it's a lot going on right now.
Do you need me to listen?
Do you me to cry with you?
Or is it more helpful if we figure this out together?".
Yeah, up front. Do you want feedback?
Yeah.
Do you want me to just listen?
How can I help you? Like, yeah, absolutely.
Like, like let's problem solve?
Oh, just listen? OK, we can do that too.
It sounds so simple when you say that but in the moment it
can feel like I should know what to do.
But in reality, you know, sometimes people need
you to check in on them and say, "What do you need?" And
that gives me the opportunity to think and reflect, hmm.
What do I need it? You know what?
I just need to cry.
Yeah.
Or you what? Actually, now that I've talked it out I
realized that there's this one problem and maybe I know
what you do or maybe I can use your help doing, getting
what I need to do.
Exactly.
But then you know that the help that you're giving is
supportive and helpful. It's what they want.
It's what they need and, you know, we're not having to be a
mind reader of guessing what's most helpful in this moment.
Another thing I thought of when we were talking about
tangible items we can give, I know in the AYA
group, they talk a lot
about Amazon Wishlists.
Oh, that's a good idea.
So, it's something that they take time
and say, "OK, these are some items that could really
help me during this journey." And that way, when
somebody comes and says, "How can I help you?" Oh, "Here's
my list. Here's my Amazon wish list.
Feel free to go take a look and you can help
in that way." Whether it be
ChapStick or lavender or whatever
may help them during this time.
That's so true because sometimes there could
be some obscure side effects that you know nothing about.
You saying the ChapStick made me think of that.
There's some individuals who, you know, dry skin
and things like that comes up. And so, maybe that's not
something I would ever think to give to a friend going
through cancer but they say, "Man, I'm so dry I need some
lotion please get me a nice one." You know, and something
that maybe I wouldn't buy for myself but would appreciate
coming from somebody else.
Exactly. Exactly.
And there's a lot of resources out there that kind of help
with that as well too. So, of course you can go
specifically to those websites and make your own list.
Right.
And there is a lot websites for that.
But there's also ones that have, that are
made for individuals who are going through something,
including cancer, but they're just kind of more, some of
them are more general for any life change or life stressor.
And so they have those wish lists.
They have almost like a blog where you can kind of post
what's going on.
And they have like a calendar for like meal trains
and things like that that you can set up and those can be
really helpful. Again, so that's something an individual
can choose I want to make this on my own and manage it
or even that's something if this is someone you're close
to, you can offer to help and just say, "Hey,
you know, I heard about this great website that helps you
just navigate your support.
Just rally your team, rally your friends.
Do you want some help setting it up?
You know, I can help you I can send you the link or I can
even manage it if you want me to be in charge of it, to
field the questions, so that's just one less thing you
don't have to deal with?" Of course, make sure they are
leading it, right? It's the level of that they still have
the say of how much information is being shared, who's
sharing it, and when.
Right.
But you may be able to just, that's a huge load to take off
someone's plate.
Also field some of the questions, like you were saying,
like some of those questions, let them come to one person
and they can take care of that.
Another term that we were talking about is grief tourism.
Grief tourism.
Yes, and how some folks,
they take it very seriously
and they come to see a patient and they take a picture and
maybe the patient doesn't look too good
or just finished a treatment, but.
But hey, that one individual looks really good in that
picture, so it's gonna go on social media.
I think that goes back to the same thing of let them be in
charge because some people really want to be open and they
want everyone to know what they're going through because
they feel you know they have a large support system that
they trust and they'd want everyone to know versus other
people are a bit more private and they kind of want to deal
with things on their own or maybe there's just people in
their life they don't want to know what's going on.
Exactly.
Just about kind of the communication.
Communication, yeah.
Which makes me think of some controversial terms that I've
heard of, too, speaking of being individualized.
Yes.
So, there's a lot of terms that I hear some patients love
and some patients hate.
So, even things like survivor versus thriver.
Being a cancer warrior, being an inspiration.
So, I hear patients who use that term and they love it.
And I have some other patients who hear it and they say,
"That's not my story."
Exactly.
What are your thoughts about that?
How do you deal with that?
Absolutely, I think that's such an important piece to
take away is every, this is their story, their
individual story, and they may or may not resonate with a
word. I was with a patient the other day and
accountability was not what they wanted to hear.
So, we had to reframe and say, "I'm here for
you to help as you try
to get from one point to the next during this journey,
let me be here for you. And we'll just, we'll do the script
like you want it." So, maybe somebody doesn't
resonate with praying or
they don't resonate with speaking about
the universe, but they resonate with other things with
maybe being mindful. I'm gonna send lots of good vibes your
way or being mindful of what does help
them and the words and the language that they do feel
best describes them.
And you can, I think, mirror that language.
So, if they're talking about themselves as being a cancer
warrior.
Right.
You're a warrior. I'm here for you.
We are fighting in this together.
If that does not reflect how you feel, you know, and a
lot of people don't, and that's totally okay.
I'm not gonna use that term with you.
Right, exactly.
Exactly.
It's just I think part of it depends on just the
individual, their experience, what they're going through,
and it changes.
Definitely I know a lot of people who resonate with some
language. Earlier on when they're newly diagnosed,
and as things change, their experience is
different and they no longer view themselves or their
situation in the same way, and that's okay, and I
think it's about following their lead and maybe you can
even ask them.
Ask for sure. I think too sometimes it comes from
a fellow patient, from another patient, it may not be as
trite, right? But if it comes from somebody on the,
who may not be experiencing their own cancer journey right
now, it may seem a little fickle, you know?
But so being mindful, yeah, whatever they say or the
verbiage they use, use that.
That means, that, that means something to them.
Tangentially related, not so much about the specific
terms, but maybe more of the approach, I'm thinking of
a term toxic positivity. I'm sure you've heard of this.
Yes, oh my goodness, toxic positivity.
Tell us what that is.
So, it's being positive, it can be good
and very beneficial. It can also be toxic.
If we can use it too much to the point where it's like,
"Oh, well, I understand you have cancer,
at least you're not bankrupt," you know?
Or "I understand, you have a cancer, you're gonna get
through this. You're so strong.
You're so positive.
You can get through anything." Well, that's a little too
positive. And when you're not feeling the
best, you might not want to hear that.
That can probably do a little more harm than good
when battling something.
And sometimes people don't want to be strong all the time
and that's okay.
It's okay to not be strong 24/7.
There are some days when we need to just make it
from one minute to the next.
And that's all that's good.
One moment at a time, for sure.
One moment at a time. Absolutely.
So, I think it's good. We just want to get that balance of
the hope and the empathy.
And again, going back to asking, right?
What do you need right now? Do you need me to sit with you?
Do you need me to cheer you up? Do yu need some
encouragement because I'm here for you either way,
regardless of what you need.
Right, exactly.
I think that's great, just showing up and being there,
absolutely.
So, you shared some good tips of some things that can be
really helpful to say and some things that could be very
helpful to do.
What are some things patients talk about, caregivers talk
about that they find to be a little bit less helpful?
Right. Like, "My grandfather had that,"
or "Yes, you'll get through it.
I know you can.
My 65-year-old neighbor can do
it. You can do it.".
Kind of going back to comparing it.
Comparing it. Yes.
Comparing it to someone else's experience.
Absolutely. Absolutely.
And the toxic positivity as well.
And one thing that I hear, I think this comes from a really
good place and I think the intent is there, but just
tweaking it a little bit to make it a little bit more
helpful is when people just say, let me know how I can
help. And you may be so genuine in that moment of
wanting to help, but then the
task, the mental energy now falls on the person you're
talking to. So, if it's a patient or a caregiver, now they
have to kind of take the energy to assess, what are all the
tasks I have to do? What are things that I can take out?
You know, what are they actually like, are you actually
wanting to help me? Or is this just kind of you trying
to be nice, like a social nicety.
Think about what's important in your life and what can be
daily tasks for you and know that most
people have to deal with those same tasks.
So, offer the help that they may need for sure.
So, we've gone over things that offer support to
other people, but what do we do if
we need the support?
That's a great question. Yeah. So, I mean, I would want to
empower everyone to get that support that you need.
I think we can start with the assumption that most people
who care about you, they care about you.
They really want to help.
And sometimes it's kind of shifting that thought of, "I
feel like I'm a burden asking for help.
I feel I'm, you know, I don't want to ask for too much."
To give them the opportunity.
It is okay to ask and it does not make you a burden.
And again, sometimes you're giving someone the opportunity
to help because a lot of times people feel helpless.
They're just sitting to the sidelines watching and they
wanna help and they just need a little bit of guidance.
I'll also give the caveat, too, that you kind of touched on
this a little earlier that it's a little bit different if
it's someone who's gone through this or not.
Sometimes the support you want is from people who've gone
through this and that's okay.
So sometimes people want support.
They have great friends, family and coworkers.
Yes, use that support, utilize that support.
Access that. That is wonderful.
Sometimes you also wanna find some peer supports.
There's things like support groups.
At MD Anderson, we have myCancerConnection to link you with
a patient who's already gone through something like this.
Patients, it's open to patients and caregiver, survivors.
There's even things like cancer camps.
So, getting connected with people who've gone through it,
it can be a different type of support.
And then of course, we talk often about this at MD Anderson
in the social work department, sometimes getting connected
with a licensed mental health professional, a therapist,
such as a social worker, psychologist, or even
a psychiatrist. Because it's good, you want you want to
kind of get the full range of support that you need from
your natural support kind of keeps inthat normalcy, the
peer support from someone who gets it, and sometimes some
of that professional support for the challenges that come
through that you need a little bit more help navigating,
and just kind of covering the full, the full range of the
cancer experience.
Absolutely. As we know it's not just the physical body that
goes through a cancer journey, but it's the mental piece
as well. And it takes so much.
It takes a village.
It does take a village, absolutely.
Well, thank you so much for joining us, Cindy.
This has been a great conversation.
I've had a lot of fun and I hope you have, too.
Yes, thank so much, Lauren.
And thank you to our listeners for tuning in today.
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