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Welcome to “Should I Call a Doctor?” The podcast where we dive into trending health topics to separate fact from fiction. We bring in experts to talk about all things health, to empower you with knowledge and answer your questions hosted by Inova Health.
0: Welcome to Should I call a doctor,
the podcast where we dive into the questions you have about your health and
today's trending health topics to separate fact from fiction.
I'm one of your hosts, Dr. Sam Glee, an internal medicine physician at Inova.
1: I'm Tracy Schroeder. I lead communications for Inova.
Dr. Sam will give you the clinical perspective while I ask the questions that
keep Patients up at night.
0: Welcome to another episode of Should I Call a Doctor. I'm one of your hosts,
Dr. Sam Elgawly. And with me is Tracy Schroeder. Um,
today we're going to discuss a topic that touches the lives of many people in
this country and that is navigating life when a loved one is diagnosed with
cancer. Whether you're a caregiver, a family member, or a friend,
receiving news of a cancer diagnosis can be pretty overwhelming and leave you
wondering what do I do now?
1: Joining us today is Jennifer Byers,
executive Director of Inova Life with Cancer,
an amazing program at Inova that helps guide people through these very
challenges. Whether you're a patient caregiver, family member, as Sam said,
or someone facing a cancer diagnosis,
Jennifer's a leader in the field of psychological oncology with more than 15
years experience building patient-centered,
supportive care programming for patients and families.
In Jennifer's current role, she leads a team of oncology,
behavioral health therapists, social workers, nurse navigators,
and oncology dieticians to ensure patients and those who support them have
access to psychosocial care and education at no cost to them.
Welcome Jennifer. We are so happy to have you with us. Tell us a little about,
bit about yourself and your role.
4: Great, thank you. I'm really glad to be here. Um,
so I am an oncology social worker by background and I've been really lucky
to get to come and work for the Life with Cancer Program at Inova,
which is really uh,
a national leader in psychosocial care for patients and families impacted by
cancer.
0: No. Tell us a little bit more about life with cancer.
4: Um,
life with cancer is a huge program and I think sometimes it can be overwhelming
or that's why people don't understand all the pieces of it. Um, to start,
we have a lot of one-on-one support, so patients, family members,
caregivers can interact one-on-one with a behavioral health therapist,
get nutrition advice from an oncology certified dietician.
We have a really robust fitness program of over 75 fitness classes every
month from cardio, drumming, tai chi movement, buff bones. Um,
we do a lot of evidence-based education.
So support classes at particularly look at non-pharma,
non-pharmacological ways to treat symptoms, brain fog,
sexual health fatigue,
a lot of those symptoms that we know impact patient's quality of life.
Uh, we have acupuncture and massage, we have a psychiatrist on staff. Um,
when we think about cancer care,
it really needs to be care for every aspect of a person.
And when we think about cancer, it doesn't just impact your physical health,
but really how you go to work, how you show up in the world, how you parent, um,
how you engage with your friends and community.
And so making sure that we normalize accessing services like life with cancer
and getting patients to the right service at the right time is a really
important part of what we do and something we're always trying to do better at.
I will say every patient is told about life with cancer,
but there are varying degrees to understanding how it could help someone
and whether or not they wanna take advantage of the services.
0: Are there criteria for participating in it? How does that work? I.
4: Would say anyone can participate in life with cancer.
So there's not necessarily criteria per se. There are different levels of care.
So for some of our folks who are really distressed or maybe have a diagnosis
like depression and anxiety, they may need one-on-one care,
maybe they need a support group or maybe they have their own therapist in the
community and they need an educational class on
um, how to use cognitive behavioral techniques to manage their anxiety.
And so we really try to match the patient and the family member with the right
service. Right.
0: When you were talking with something that was interesting,
you shared about all the fitness classes and it sounds like you guys do some
pretty cool stuff.
4: So, um, a lot of our classes are online since the pandemic. Um,
and what we found from patients is that that really decreases a barrier to
getting into a location. And so certainly there's a lot of online options.
We are also embedded in every cancer center.
So we are embedded at Fair Oaks and Loudoun and Alexandria
also here at ICPH where we have smaller fitness spaces for
in-person programming.
And then we have our flagship location that's about a mile from the ICPH campus.
It has a really beautiful fitness studio,
which is where we do some of our online classes,
but a lot of our in-person classes and there we have weights and the
materials for cardio,
drumming and all of the pieces that people would need for fitness.
Um,
and what's really beautiful about that is what's most important about the work
we do is a community that it builds.
I think that people can get a lot of impact from taking a class online and we
wanna make sure that that's available just because of the barriers that exist
for some people getting to and from places.
But that community of working out with other people that are going through a
similar experience or the hug that you can give someone when you get in a room
is really a key part of the healing journey and why a lot of the
programs that we have are so important.
Talk a little bit about how caregivers access you. That's so fascinating to me.
Yeah. Caregivers are so incredibly important and oftentimes are forgot.
Mm-hmm .
I think as a caregiver sometimes people think that they don't have a right to
have needs or that really all the attention needs to be focused on the patient.
And so many times caregivers aren't incorporated or
thought about when we think about how we're gonna support this patient and
family. Um,
I always say cancer is a family illness and really even probably more broadly
it's a community illness.
And so the healthcare system helps take care of patients,
but the caregivers are really the backbone of who is caring for them 24 hours
a day.
And it can be incredibly scary to watch someone you love go through something
like a cancer diagnosis and know that you can't fix it or
you don't have a medicine that's gonna make things better.
And managing that can be even more complex when the person
that you always talk to about your fears is the one going through that thing and
it may not feel appropriate to go to them with the things you're worried about.
Um, so that's why the caregiver programming we have is so incredibly important
because it's this unique space for people
to get that support, um,
to meet with other caregivers to help normalize their experience,
to make sure that they have a place to talk about what's going on inside of them
and not feel so isolated and alone. Right.
1: I think that community aspect of it would be so important 'cause there's such a
mix of emotions that likely accompanies that, you know,
there's stress placed on you, everything's on your shoulders,
you are having to anticipate the future with a lot of question marks and um,
I'm sure the support that they receive is, is really needed.
4: A lot of people are new to the healthcare system, right?
1: So.
4: They don't know what the words we're using mean and they don't know
all the different specialists that are gonna be involved and they don't know the
side effects or how to manage them. And so I think for caregivers,
a lot of times they can feel like fish outta water. Mm-hmm .
And oftentimes they hear from caregivers like, I'm not doing a good job,
or I'm not doing this right. Which is almost never true.
Like caregivers are so incredibly resourceful and they
oftentimes know exactly what the patient needs and exactly how to provide it to
them. And so just one being in community and hearing from other people that what
they're doing is right or even getting tips and tricks.
The cool thing about a group is that you have people who are just starting and
you have people who've been doing it for a while and so people can learn from
one another. Um,
but also that individual one-on-one support can be a great place for them to
build their confidence.
And here you're doing an amazing job and this is really hard and there's not a
right way to do it.
And I think that can be really important for our caregivers in, um,
just feeling confident in the care they're providing for the person that they
love so much.
1: That's great. That's very helpful.
0: Yeah, it's interesting, like before this podcast I was thinking very much about
the patient aspect of it,
which is of course a huge part of what you guys do and even the caregiver
aspect, but the community part, the more you're talking about,
it seems to me that not that maybe there is no comparison between
what's more powerful or not,
but to me it seems like the community part is extremely powerful and we may be
underestimate the value of just alone having people who are going through the
same thing and just having that outlet to vent to
express your concerns, et cetera. In addition to what you're talking about,
which is the expertise that comes from that.
Like I can get as much expertise or a different kind of expertise from someone,
like you said at the end of that journey,
who's learned how to some tick tricks and tips and how to navigate the
complexity of the healthcare system as I would talking to a professional.
And so just as I'm hearing you talk,
it's pretty amazing that that's almost a way of leveraging another resource
separate from the professionals that in many,
many ways sometimes bring a totally different type of expertise. Yeah. Um,
I think that's amazing. Like do you have specific caregiver groups?
What does that look like?
4: Um, it can look a lot of different ways.
I will say all of our groups are professionally facilitated,
which I oftentimes think is a really important part of making sure that it is
safe. But if I could give anyone one piece of advice,
it is always go to a group and I hear from folks,
I'm not a group person or I don't have time or I don't feel comfortable sharing,
but just like you described,
there's something so amazing that happens in a group.
It's a group of your peers that's been living this and there's
something so powerful about learning from each other
and also something so incredibly powerful about being able to give words to your
experience. And so these groups become this really incredible place where,
where those things are happening and we can't replicate it in one-on-one
sessions.
And I think some people need one-on-one sessions and we have those and some
people need groups and we have those too.
So you ask kind of the specifics of how it's happening. We, um,
have a caregiver group that meets virtually because for our caregivers coming in
as such a barrier and leaving their patient at home oftentimes is such a
barrier. And so we have a group that folks can come into,
they can drop into it when they're able,
there's not a requirement that they come every month. Uh,
and what I do find is that people come back over and over develop those
relationships and get a lot more out of it.
But it's not to say that someone couldn't drop in once and and take a tremendous
amount of learning from it, but um,
our fitness classes are available for caregivers as well.
Our oncology certified dieticians are available for caregivers because we wanna
make sure that they're taking care of their nutritional wellbeing as well as
taking care of the patient's nutritional wellbeing.
So really just about everything that we offer can be available to support
caregivers through their journey as well. Oh wow. Because again,
we get really caught up in thinking about how do we care for the patient?
How do we make sure that the patient has what they need?
And that's really important.
But equally as important is making sure caregivers have their needs met as well.
0: Yeah. Well, and and I don't know if you mean it this way,
but it's valuable in my opinion to focus on that because the caregiver in
and of themselves is a very important person who deserves to have their needs
met, et cetera.
But I would also imagine taking good care of the caregiver also means the
caregiver can take good care of the patient. That's right. Absolutely. And it's,
you wanna set them up for the best physical, mental,
emotional success in such a difficult job. Um, especially.
1: 'Cause you don't know like how long a patient's gonna be in that space. Yeah.
And so it's, it's not that they just have to be set up once and you know,
set it and forget it.
I imagine like that that sort of care and feeding of their own mental and
physical health that takes time and needs to be revisited throughout a diagnosis
throughout their time as a caregiver that can sometimes stretch on.
4: Yeah,
I think that's really important and that really made me think about this idea of
communication because one thing that caregivers and patients have to learn
in this new environment of a cancer diagnosis is how to communicate,
how to communicate about their needs,
how to communicate when things are changing.
There oftentimes can be major role changes in a relationship or in a family
when someone's diagnosed with cancer.
And that can create a lot of stress for how people interact.
And so learning how to communicate as things are changing can be a really
important part for caregivers and patients.
I find oftentimes patients and caregivers feel like they're protecting one
another by not talking about some of these really hard topics.
And what happens is it creates all this internal stress and it utilizes a lot of
energy to manage what's happening,
where a conversation while really hard can help make
sure that people aren't making assumptions that aren't true can help bring
people on the same page.
And that can be done by learning communication styles and group or
also and some of that one-on-one work.
1: What are topics that come up that might resonate with what a caregiver is going
through right now?
4: I think a lot of times caregivers feel really pressed for time given how much is
going on. And I also think as adults we are not good at asking for help.
We are used to operating very independently.
The culture that we live in is a very independent,
I can doit culture and so many times I'm working with caregivers on
how do you get comfortable asking for help?
How do you build up your social network?
How do you utilize your church community or your social community to make
sure that you are not caring the entire weight of caregiving?
And I like to frame it in a way of almost by not asking for help,
you're being selfish because our communities really wanna rally around us and
really wanna support us. And when you hoard all the caregiving,
you're not giving others opportunity to be a part of that experience.
That's right. Um,
and intrinsically it's really important for us to feel needed and it's really
important for us to feel like we're making a difference in people's lives.
And so sometimes that shift,
that reframe can be really important in helping people learn
to ask for help. Um, and I will tell you,
I have heard from folks that the people who I really expected to show up for me
did not show up for me.
And some people came out of the woodwork that I never expected would've been
helpful.
And so there has to be a little vulnerability in there and there has to be a
willingness to, um,
to be told no and to know that people are gonna let you down and to know that
people are gonna surprise you.
And that can't happen if we don't ask the question or create the opportunity.
1: That's, so that's an amazing piece of advice.
I just think of when I've had friends going through a cancer diagnosis and the
meal trains that have been set up and the, you know,
the other care of carpools and whatever else you can do. Like to your point,
people want to help. They want to rally around you. That's good. Yes.
And if they can take something off your plate, that's a good thing to do.
They want to do that and you know,
so I think that's so powerful that it's hard to ask for that help but be
vulnerable, put yourself out there.
'cause you probably will be surprised at what comes.
4: Back. Yeah, I think that's always true. I mean,
community can be incredibly powerful.
The other thing that sometimes we think about with caregivers is this idea of
concentric circles with the patient at the middle and then the caregiver and the
next ring and the friend and support on the outside.
Some people like to think of you o you only lean out so the caregiver
doesn't necessarily ask the patient for anything.
The patient asks the caregiver something and then the caregiver asks the support
ring for something. The support ring doesn't ask the caregiver for things.
I think that can be a helpful way to look at things.
And I think it's mostly true.
I think that back and forth sometimes between a patient and caregiver can be
really important.
And so I don't want caregivers to think that they can't ask for what they need,
but they also do absolutely need to have some external resources.
It's not something that you can do alone or you can do it alone,
but it's gonna be so much harder.
And so really thinking about how do you build that circle around you to make
sure that you have what you need and maybe one person is gonna be the one who
provides transportation and someone else is gonna be the one who does the meals
and someone else can't do any of those things,
but they have money that they can donate to a laundry service.
And so really being creative about where can people help and where
can you loosen control to lean on the people that are kind of on your next
circle out can be really important.
1: Yeah. That, that is great.
'cause I also know that with people going through diagnosis, there's,
there's probably gonna be more than one opportunity.
There's milestones in a cancer treatment plan a lot of times that would require
them to have support at different times.
4: Yeah. I think, um, what's so interesting,
what I hear from patients and c caregivers a lot is everyone really rallied
around us. When we got the diagnosis, everybody wanted to help.
And now here we are a year into it or two years into it or three years into it
and there's where is everyone?
And so I think for caregivers who are listening who maybe aren't direct
caregivers but are support people of caregivers, um, you know,
yeah, things are really intense in the beginning, but,
but people remain needing help and so ensuring that folks are checking in often,
um, not always expecting that people are gonna know what they need.
So be creative and think about what would you need in that situation.
And instead of saying, Hey, what do you need?
Which feels like a lot of pressure. Say I wanna bring a meal tomorrow,
is lasagna okay?
Or I notice that I pick my kids up at the same time you pick your kids up,
could I bring them back to my house to play for a little bit?
Really thinking about what can you offer so that the people who are
in deep in the experience aren't always having to come up with what the need is
or ask what ask for things because that in itself can be really
exhausting.
1: Yeah, I can appreciate that. You know,
someone in having a di that has a diagnosis, whether cancer or anything,
you know, look for creative ways, housekeeping, laundry, childcare, play dates,
you know, rides, food. There's a number of ways you can help alleviate stress.
4: Yeah. And you brought up such an important part too about um,
needs change and I think that as caregivers,
a really important piece is being flexible. Um,
that what a patient needs on day one may look different than day four and what
they need at 8:00 AM may look different than 10:00 AM.
So they may have said like, I want this beautiful meal,
and you bring the meal and they're like, I don't want it anymore .
Or I want you to rub my back when I'm feeling nauseous and it's like,
don't touch me. Yeah. . Um,
and so really creating space for those shifts and changes
and, and chicken in, is this helpful? Um,
and when they say that something's helpful day one,
that doesn't mean it's helpful day 10,
but leaving some room for changes and
flexibility and also knowing that it doesn't have to be perfect.
1: That's right. That they'll appreciate you showing up. Yeah.
4: Exactly. Um, and the other thing that I think could be really helpful is,
is checking in on folks but without an expectation of a response.
So sending a text,
I'm thinking about you or sending a text like with a joke or
something funny because oftentimes patients say like,
people only wanna talk about cancer, I only feel like I'm my cancer.
And so putting some levity in this situation can be helpful,
but also not expecting something in return I thinking about you can be also
really impactful because they know that, you know,
you haven't forgotten that they're going through something,
but that they don't need to take the limited energy that they have to take care
of you or create a response.
1: That's such good advice.
I know one of my friends that's going through something,
whenever I don't hear from her for a while,
I just drop her a love note and I'm just like, it's a love note.
You don't have to respond. Like, I'm just thinking of you.
And I think it just frees her up.
'cause sometimes she responds and sometimes she doesn't,
but there's no expectation of it.
It's just to make sure she knows she's not falling outta my mind. Yeah.
4: And that she's not taking care of you. Right. Um, which is so,
so important when people are really in the thick of a cancer diagnosis.
1: Any final words that you'd want to impart to our listeners?
4: As a social worker,
it's been really important to me to make sure that we normalize that a cancer
diagnosis is difficult, that we normalize that, um,
it's not all about the physical treatment.
That really when we take care of a whole person and a whole family
and a whole community,
it makes it easier to go through this difficult diagnosis with ultimately the
hope of people coming out with an improved quality of life.
That there's some silver lining, you know,
we wouldn't wish cancer on anyone, but if you have to go through it, let's,
let's make it as good as it can be and as painless as possible,
and make sure that folks have exactly what they need to, to go through it.
1: That's remarkable. Thank you.
This was enlightening and I'm so proud to work at a place that offers this,
has service. This is amazing.
And I hope that we helped others that might need it out there.
Learn about it today and access it because I love that it's free and it's
accessible to anybody who wants it. So thank you so much, Jennifer.
4: Thank you.
1: Thanks for tuning in. We hope you enjoyed this episode.
If you liked what you heard, be sure to subscribe.