Holistic Coping Strategies for Cancer Survivorship | June 29, 2021

June 30, 2021

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Presentations by Drs. Dwain Fehon, Jennifer Kilkus, Javin Brita, PA, Brian Jin, LCSW, Angela Khairallah, LCSW, and Ed Schwartz, LCSW

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00:00Thank everyone for joining for those.
00:02Those of you who might just be tuning in.
00:06Now again, I'm Jeff and Britta,
00:08and the position assistant with the Yale
00:11survivorship program and welcome all
00:13of you to our Smilow Cancer Network.
00:16Smilow shares event,
00:17the survivorship series for National
00:19Cancer Survivors Day Virtual celebration
00:21here at Smilow Cancer Hospital.
00:23We're hosting this month long event to
00:26celebrate all of our cancer survivors
00:28across across our wide network.
00:30Here at Yale and we're doing
00:33our live webinar series,
00:34our last one of the month tonight.
00:37Until about 8:00 PM,
00:39and we can certainly go a little
00:42bit longer as time permits.
00:44Well, we want to be mindful
00:47of everyone's time as well.
00:49As I mentioned, to kick things off,
00:51I'm Jeff and Britta and the physician
00:54assistant with the Yale survivorship program.
00:56I'm going to be just, you know,
00:59talking about here tonight,
01:00helping go through some of the questions.
01:03But the stars of the show are here with me.
01:07Our panel for the SMILOW shares
01:09event tonight.
01:10Holistic coping strategies
01:11for cancer survivors,
01:12and I'll start by having
01:14them introduce themselves.
01:15Go ahead Doctor Kahan.
01:18Hi everyone,
01:18thank you for coming tonight.
01:20My name is Dwayne fan.
01:21I'm a clinical psychologist
01:23on faculty here at Yale.
01:24I've been here for almost 30
01:26years and I've been working at
01:28smilow since it opened in 29.
01:30So that's thank you again for coming.
01:32I look forward to sharing a
01:34little bit about what I've learned
01:36about coping and resilience.
01:39Thanks so much Doctor. Praying
01:41on go ahead Doctor Kilkus. Hi,
01:43I'm Jennifer Kilkus on my
01:45clinical psychologist San,
01:46I've been with Yale a year on Thursday,
01:49so not nearly blank as doctor
01:51Fay Hon but really excited to
01:53be here and helps their share
01:55some strategies to help cope.
01:59Thanks so much. Go ahead and hi
02:02everybody. Thanks for joining us.
02:05Well, my name is Ed Schwartz on the
02:09outpatient palliative care social worker.
02:11It's mylar, Milo Cancer hospital.
02:14An I2 as as Dwayne, Doctor,
02:17Fei Han hand doctor Kilkus said.
02:22Excited to be able to share some
02:25information with you so thanks.
02:29And go ahead. Angela, thanks Sir.
02:33Hi good evening
02:34everyone. My name is Nicole Corolla.
02:38You are very pretty young
02:40survivorship clinic.
02:41I've actually been in the clinic a
02:43little over 8 years now and I work
02:46in the Celebrex Center as well so
02:48I'm looking forward to this evening
02:50and thank you for joining us.
02:54Thanks so much Angela, go ahead, Brian.
02:56Hello everyone, my name is Brian Jenn.
02:59I'm one of the clinical social workers
03:01at Smilow Trumbull and Smile of
03:02Greenwich and very happy to be here.
03:07Alright thanks everyone,
03:08appreciate that and you know The
03:11Tonight we're going to be taking some
03:13questions from all of you here through
03:15our zoom platform you can type in your
03:18questions to the question and answer
03:20chat box that's available to you.
03:22You can type that in.
03:24We're going to answer your questions after
03:27the presentations and the format will be.
03:29We're going to have three presentations
03:32from Doctor Bayhan, doctor Kilkus,
03:34and add talking a little bit about.
03:37Some of the topics related to list of
03:39coping strategies for cancer survivors.
03:41And then after that we'll answer as
03:44many questions as we can get to,
03:46and that'll take us right through the hour.
03:48Alright?
03:49So without further ado,
03:50I'm going to pass the baton over to
03:52Doctor Pehan to kick things off.
03:55Great, thanks very much Kevin.
03:57I'm going to just take a second
03:58here and share my screen.
04:00I have some slides that
04:01I'll share with you all.
04:03Most people there suck.
04:05Can everybody see that OK?
04:08OK, great so right.
04:10As I said when introducing myself
04:12I'm a psychologist at Smilow.
04:14I like to think of myself as a helpful
04:18resource for helping folks cope with.
04:21The diagnosis of cancer and
04:24all that goes along with it.
04:27What I've prepared for
04:29tonight or some helpful,
04:30hopefully what I think are helpful.
04:33Tip, it's around coping
04:35and maintaining resilience.
04:37So first of all,
04:38what I want to just emphasize is you're
04:42not alone in this whole experience.
04:45As you may know,
04:46there are over 17 million people in
04:49the United States right now who are
04:51living with a diagnosis of cancer.
04:53Almost 2 million people will
04:55be diagnosed this year.
04:56An unbelievably by 2040,
04:58there will be over 26 million
05:00cancer survivors.
05:01And sadly,
05:02almost 40% of us will be
05:04diagnosed with cancer at some
05:06point in our lifetime so far.
05:11Those are concerning numbers.
05:13And as you know, more than anybody else,
05:16the experience of cancer can certainly
05:19feel like an emotional rollercoaster
05:20with so many ups and downs that can
05:23impact how you think about yourself,
05:25your life, your future.
05:27Can certainly challenge your
05:29ability to adapt to the changes in
05:31your life and to cope with them.
05:34It can be very difficult,
05:36but it can also foster growth
05:40and many unexpected ways.
05:43One of the things that I'm interested
05:45in as a faculty member is how
05:48people cope and how do we maintain
05:50resilience even when facing very
05:53serious illnesses like cancer.
05:55Now let's just talk about
05:57resilience for a second.
05:59The American Psychological Association
06:01defines resilience as the process of
06:04adapting well in the face of adversity,
06:06bouncing back from difficult experiences.
06:09When I've asked him and my patience,
06:12what does resilience mean to you?
06:14They've said things like, well,
06:15feeling better or feeling more alive.
06:19There's a whole science around
06:21resilience and trying to understand
06:23what helps people remain resilient
06:26in the face of extreme stressors.
06:29We're looking at the neurobiology
06:31of stress and again,
06:33what are the brain mechanisms
06:35that involve adaptation,
06:36resilience to stress and what we know
06:38in it from a very basic perspective
06:41is that resilience reflects the work
06:44of many active and adaptive mechanisms
06:47that mainly have biological bases.
06:51But sparing you from the neurobiology,
06:54we can think of resilience.
06:55It's it's not something that
06:57you have or don't have.
06:59It's not a static property,
07:01it's very dynamic.
07:02It's something that can rise and fall
07:04depending on the circumstances in our lives.
07:07And it's also something that we can
07:09build and maintain through intentional,
07:11healthy habits.
07:14And so that's what I want to
07:17think about with you right now.
07:19What is resilience in the whole
07:21person mean when we think of
07:23the whole person and resilience,
07:25we're often times thinking of
07:27these two basic dimensions, right?
07:28The physical dimensions and
07:30the emotional dimensions.
07:31You can add other dimensions to this,
07:33like the spiritual, the social or what.
07:36I'm going to focus on right now
07:38is mostly these two with physical
07:40and emotional dimensions.
07:41Because they are so intricately related,
07:44right? How you feel physically has a
07:46huge impact on how you feel emotionally.
07:49And so when we think about resilience,
07:52we have to think about these two
07:54things and a whole person approach.
07:57Thinking about the physical
07:58dimensions of individuals life,
08:00the emotional, spiritual,
08:01and so forth.
08:03What we're talking about and good care good.
08:08Whole person care has got to include
08:11attention to these these qualities.
08:14And so I will just take a minute and ask
08:17you a couple of questions and you can
08:19send some answers in the chat if you like.
08:22What gives you strength.
08:24In life, what helps you to bounce
08:28back from difficult circumstances?
08:31What helps you to feel better or more alive?
08:37Think about it.
08:38What gives you strength in life?
08:40What helps you bounce back?
08:43What helps you feel better, more alive?
08:47Anything coming through the chat,
08:48Kevin.
08:51Not right at the moment, but again,
08:53as Doctor Flynn mentioned,
08:54please feel free to type into the chat.
08:57Yeah, answers to these questions.
08:58Yeah, let us
08:59know and that's OK.
09:01You don't have to say anything.
09:02Got one right here. Williams has my faith.
09:09Oh my gosh, there's a
09:10lot coming in now all at
09:11once. Alright, alright, let's hear.
09:15Morenes has my pet. Mary says my kids.
09:19Yes, Beverly says power of prayer for
09:23healing faith again. Prayer, yeah,
09:26Janet says socializing with friends,
09:29family support, friends, family.
09:31Yep, Lindsay sometimes just
09:34time time right? Janet
09:36also says exercise, exercise,
09:38access the great one good,
09:40right, right, right? You've
09:42got it. Oftentimes,
09:43the things that give us strength are
09:47things that we do through action,
09:50like exercise, prayer,
09:51getting together with friends,
09:53but it can also mean things that we do.
09:57Mentale prior is part of that,
10:00or meditation.
10:02Patience, acceptance,
10:03and So what I'd like to do is to present
10:07to you a very basic three part model
10:10for building and maintaining resilience.
10:13That kind of captures this holistic
10:16approach where the first part of
10:18this model is around healthy lifestyle.
10:21Someone said exercise and friends will
10:24talk more about that in just a second.
10:27The second part of this model
10:30relates to optimizing medical care.
10:32And managing difficult
10:33symptoms that you may have,
10:35and the third part is around cultivating
10:38healthy habits of mind and heart.
10:40You know that heart quality
10:41that we want to live with.
10:43So let's talk about the first part
10:45for a second healthy lifestyle.
10:47So what do I mean by that?
10:50What I mean by healthy lifestyle is those
10:52things that form the foundation for very
10:55good physical and mental health, right?
10:57Getting a good night's sleep,
11:00moving your body, exercising regularly.
11:04Healthy diet.
11:06Making time with family and friends.
11:10The capacity to accept help from others
11:12who these are sort of healthy lifestyle
11:15habits that we can develop and cultivate.
11:17And when there are problems
11:19in any of these areas,
11:21if someone's not eating well
11:23if they're not sleeping,
11:25not getting sufficient exercise.
11:28Not willing to accept health,
11:29it can affect your ability to maintain
11:32good physical and mental health, right?
11:34It can jeopardize your ability
11:37to manage stress.
11:38And so that brings us to the second part.
11:42Let's say someone isn't sleeping well
11:44or someone has poorly controlled pain.
11:47We want to make sure that we're optimizing
11:50the medical care that that you receive,
11:53because again, good physical health
11:55is connected to good mental health.
11:57They're both connected when we
11:59can reduce physical suffering.
12:01We can also reduce emotional suffering.
12:04So we want to make sure that if
12:06you have poorly controlled pain,
12:08nausea, fatigue,
12:09shortness of breath that you're
12:12getting good care for that.
12:14But we also want to make sure that if
12:16you have other comorbid conditions
12:19like diabetes, heart disease,
12:21depression,
12:21anxiety that you're getting the
12:23right care for those things as well,
12:26because all of those affect physical health,
12:28physical functioning and can have
12:30an impact on emotional well being.
12:33So so far in this this model we're
12:35talking about just general lifestyle,
12:38healthy habits,
12:38getting good medical care to
12:40reduce the physical suffering,
12:42and then the third part.
12:44Is what we can do through cultivating
12:47healthy habits of mind and heart.
12:49Now these are the things that we can
12:51do to that effect that will relate
12:54to how we think our attitudes.
12:57Cultivating an understanding of our of
12:59the relationship between our thoughts,
13:01our feelings and behavior.
13:02Because these things are all connected,
13:04which I'll talk about in just a second.
13:08But other healthy habits that
13:10will also touch base on
13:12in a minute relate to the idea of
13:15mindfulness, acceptance, compassion,
13:17flexibility and knowing how to cope
13:20based on the situation and also
13:23attention to one's values and what
13:26is meaningful for them in life.
13:28Now there's a very basic principle
13:30in psychology and is based on
13:32this idea that our thoughts,
13:34our feelings, and our behavior.
13:36They're all connected.
13:37How we think how we act these things.
13:41Shape how we feel.
13:42I mean, imagine the thoughts
13:44that you have in your head have
13:47a huge impact on how you feel.
13:50So if we want to reduce the feelings
13:53of anxiety or depression or stress,
13:55it makes sense to think about
13:58how are we thinking?
13:59What are the attitudes we were
14:01bringing to the situation?
14:03What healthy, constructive,
14:05helpful attitudes can we adopt in life
14:08that help us to be more resilient?
14:11And have a better sense of well being
14:13as well as what kind of behaviors can
14:17we adopt that help in these regards?
14:20Now, mindfulness is a very old concept,
14:23right? It goes back thousands of years.
14:26But it's become a very popular concept,
14:29in part because of people like
14:32John Cabots in.
14:33And for those many of you are
14:36probably already aware of this.
14:37But for those who aren't aware,
14:40mindfulness refers to being
14:41in the moment you know,
14:43and an awareness of the present moment.
14:46It involves adopting an attitude of
14:49nonjudgmental acceptance so it's being here.
14:51Many times in life,
14:53we're thinking about the future.
14:55What's going to happen then?
14:56What if this?
14:57What if that?
14:58Or we're thinking about the past,
15:01the things that have already occurred
15:03very little time is spent in this moment.
15:05If we think about it,
15:07and when we're trying to manage
15:09the uncertainties of the future
15:11or the events of the past,
15:13any stress related to the past or future,
15:16we can bring ourselves back to
15:18the present as a way of managing
15:21some of that stress.
15:22So mindfulness is a really helpful idea.
15:26But also we want to get good at
15:29understanding what are the sources
15:31of stress in our life and know what
15:34strategies are best aligned with the
15:36type of stressor that we're experiencing.
15:39So for instance,
15:40you know in life in any stressful
15:42event there are controllable or
15:44uncontrollable aspects of a problem, right?
15:47Mean cancer is a great example of that.
15:50There are some things that you
15:52can do to control.
15:54Your situation,
15:55but there are lots of aspects of it
15:58that we just can't fully control.
16:00So if a stress room is within your control,
16:04if there's aspects of a problem
16:06that are in your control,
16:08you're better off something figuring
16:10out how to solve that problem, right?
16:13So we want to use what we call problem focus,
16:17coping strategies,
16:18gathering information, making decisions,
16:20resolving conflict, setting goals,
16:21getting help, things like that.
16:23Concrete,
16:24constructive efforts to solve the problem.
16:27But what if the stressor has
16:29elements that are not controllable
16:31that are beyond your control?
16:34Those problem focus strategies
16:35aren't going to work right because
16:37you can't solve the problem.
16:38It's not in your control,
16:40so the next best thing that we can do is
16:43change how we think about the problem.
16:46If we can think about the problem
16:48differently, it can have an impact.
16:50A good impact on how we
16:53feel about the problem.
16:54So this is what we refer
16:57to as emotion focused,
16:58coping like rethinking this situation.
17:00Acceptance accepting what is when
17:02we can accept what is in life,
17:05we often suffer less.
17:07Getting support,
17:08exercising, meditating,
17:09these are all other examples
17:12to help us cope with problems
17:15that are beyond our control.
17:20But flexibility really is the key
17:22here to be able to shift gears
17:25depending on the situation and
17:27within yourself, recognizing well,
17:28this isn't in my control,
17:30I have to stop trying to
17:32fix it and switch gears.
17:37And finally I want to bring our
17:39attention just to the importance
17:41of meaning and purpose in life.
17:43We had just this one life.
17:46What's most important to you in your life?
17:49What are your deepest values and beliefs?
17:52What is the purpose of your life and what are
17:56the things that are most meaningful for you?
18:00When we can stay connected to the sources
18:03of meaning to things that are purposeful,
18:06it makes a huge difference in life, right?
18:09It's when we get disconnected from them,
18:11were problems can arise.
18:13So we'll come back to those three
18:16questions again, what gives you strength?
18:18What helps you bounce back?
18:20What helps you to feel better and more alive?
18:25These are things that we do through action,
18:28like maintaining healthy lifestyle,
18:30exercise, and so forth.
18:32Things that we do mentale.
18:35The healthy habits of mind in heart,
18:37that's the prayer of the patients.
18:40The flexibility.
18:40And things that you can do to
18:43maintain your health like staying
18:45on top of all of your medical
18:47issues and talking to your doctor.
18:49So I hope these principles
18:51are helpful to you,
18:52and I think the other speakers and
18:55panelists tonight will all connect
18:57to some of these things and I
18:59hope we can talk more about that.
19:01So thank you very very much.
19:06Well, thanks so much. Acting on
19:08that was really enlightening.
19:09I thought you know to see how there are
19:12so many ways that we can act on. You know,
19:16ways to cope with with where we're at.
19:20Through our own health.
19:21Through our mindfulness and
19:22really that mind body connection,
19:24I think that's great to know.
19:27Angela, I saw you had.
19:29Now OK, never mind excuse that these
19:32things happen when we're on zoom.
19:35Alright, well I just want to mention,
19:38you know some other answers to
19:41that question that you posed.
19:44Doctor Fasehun faith and family again.
19:48Strength from time in fellowship at Church.
19:51So again faith exercise making art work.
19:55And then work itself diving back into work.
20:00Really great.
20:01That's
20:02right, and the faith you can
20:04have that wherever you are right,
20:06it's always with you.
20:08That's the beauty of faith.
20:11Alright, and I just want to
20:13remind everyone before we get
20:14into the next presentation here.
20:15Feel free to submit questions.
20:17We're going to get to the
20:18middle of the end as best we
20:20can and doctor Kilkus with that.
20:22I will turn it over to you.
20:24Thank you.
20:26And thank you Doctor Fei
20:28Han for your presentation.
20:30I'm so pleased that that I
20:32really think we're going to be
20:34sending a unified message here.
20:36Between the three of our presentations,
20:38which I think is actually a really
20:40positive thing. It helps to hear.
20:43That from the experts.
20:45So these are things that are helpful,
20:47and these are things that do work.
20:49Doctor Fay Hank gave just a brief
20:51description of what he does at Yale,
20:53and I'll do the same.
20:55I primarily work with patients
20:57throughout their diagnosis and
20:58treatment and even into survivorship
21:00years after treatment is complete
21:01for psychotherapy in helping people
21:03learn tools to help manage both
21:04the emotional aspects of cancer
21:06in the physical aspects as well.
21:08And I did want to answer one question
21:10I saw in the chat because I think
21:13it's an important one and I want to
21:15make sure that everyone feels like.
21:17This these things apply to them was that
21:20the question of how do we define survivor?
21:22And generally speaking,
21:23when we're talking about cancer survivor,
21:25we're talking about someone who's
21:27been diagnosed with cancer,
21:28and from that point forward.
21:29And so regardless of how many years it
21:31was after you completed your treatment,
21:34you're still considered a survivor.
21:35I know that that that's not a
21:37term that fits for everyone,
21:39but it's hard to describe a pretty huge,
21:41diverse group of people with just one word.
21:44And I think that that's the best we've got
21:46so far and will continue working on finding.
21:49Training with that.
21:50How that fits for everyone.
21:52So I wanted to target a couple
21:54of common myths that I hear often
21:57when I'm working with people,
21:59either because they say them
22:00themselves or they hear them from
22:02other people in their lives,
22:04and so I just chose two of the
22:07most common myths that I hear.
22:09I'll go over the facts of what
22:11we actually know about.
22:13In contrast to these myths,
22:15and then some things that you
22:17can try to do instead.
22:19Of having these kinds of thoughts
22:21rolling around in your mind,
22:23if they're not helpful.
22:24So the first here is that you need
22:27a positive attitude to beat cancer.
22:29I hear this actually quite a lot,
22:31or sort of the alternative version of
22:33that is that if you're feeling scared,
22:36if you're angry,
22:37if you're depressed.
22:38If you're thinking why me,
22:39then your cancer won't go away,
22:41or that it'll come back that
22:43somehow your treatment won't work
22:45if you're having these,
22:46what I would consider very reasonable
22:49and human responses to a very.
22:51Challenging situation.
22:54So I'm going to bust that myth and say
22:57that that actually what we know is
22:59there isn't any evidence at all that
23:02having a positive attitude improves
23:04your chances of your treatment.
23:05Working prevents recurrence or or prevents
23:07death from happening from cancer,
23:09and there's actually been quite
23:11a bit of work done on this,
23:13probably about 20 or 30 years ago.
23:16Researchers got really interested in
23:18personality and how personality influences
23:20cancer response in cancer recurrence
23:21and what we found was really we don't.
23:23We don't have a lot to go on.
23:26What we do know is that pushing
23:28down feelings, avoiding them,
23:30suppressing them or denying our
23:32feelings can backfire and can make
23:34it hard to cope in the long run.
23:36So even if it may not influence
23:38your your cancer trajectory,
23:40it will certainly make life harder
23:42in the meantime and I just put
23:45that quote there by Karl Young,
23:46one of the founders of psychology is just
23:49point this out that what you resist,
23:51persists,
23:52so we know that usually the harder
23:54you try not to think about something.
23:57Or the more you try to shove
23:58down your motions,
23:59maybe shove them into a closet the the more.
24:01Actually it will keep coming around
24:03because we're actually sending a signal
24:05to our brain that this is important.
24:06You need to think about this
24:08so it doesn't usually work the
24:09way that we intended to.
24:13OK, So what do we do instead?
24:16What they have done something here?
24:19OK, alright so the first years is
24:22fun to just acknowledge except that.
24:25I think I've done something
24:26funny with my oh OK, I got it.
24:28Technology is not my strong suit you.
24:31You might have caught on to that.
24:33OK, so instead Doctor
24:34Fagan talked about this.
24:35The idea of acknowledging
24:36and accepting how you feel,
24:38which isn't an automatic process.
24:39You don't just suddenly one day you wake
24:42up and realize that oh I need to pay
24:44attention to how I feel and be OK with it.
24:47It's it's something that you can learn
24:49to do more effectively overtime,
24:51but part of how we do that is to
24:53start talking to ourselves about
24:54how we feel and start challenging
24:56these ideas we have in our minds
24:58that just simply aren't true.
25:00That the fact that we struggle
25:02with difficult things as human
25:03there are no superheroes.
25:05They're not real. Where we're humans.
25:07We have human emotions.
25:08We respond to things in a way that
25:10reflect that in our emotions are
25:12often communicating something to us,
25:14and they're important to pay attention to.
25:17And Doctor Flynn also mentioned
25:19the idea of mindfulness,
25:20and that's one of the ways that
25:22we start paying attention and
25:24getting better at recognizing what
25:25our emotions are in response to
25:27certain situations in what are go to
25:29habits are in responding to those,
25:31whether those are effective or ineffective.
25:33A lot of times we're so busy and so
25:36caught up in stress and things that
25:37we have to do that we don't often
25:40slow down and actually pay attention
25:42to how we feel and so it's hard to
25:45know what to do about our feelings.
25:47If we're not aware of them,
25:49and maybe sometimes that comes out in
25:52different ways, like, well, you know.
25:54Well,
25:54flip off somebody on the on the
25:57Interstate when we're driving
25:58because they've they've cut us off.
26:00Or maybe we snap at us faster at
26:03our child or something like that.
26:05Or maybe we start to have physical
26:07effects from suppressing her
26:09emotions like it's not uncommon
26:10to have some stomach troubles if
26:12we're feeling upset chronically.
26:14And so to avoid things getting to that point.
26:18We can get better at recognizing
26:20those things as they start to pile
26:22up by giving ourselves a chance
26:24to pause every now and then and
26:27just check in with ourselves.
26:28And I put this idea of observe,
26:31describe and participate down here
26:33because it's it's sort of a quick and
26:35dirty way to start practicing mindfulness.
26:38One we observe what's going on
26:40around us that could be internally
26:42that could be externally.
26:44Describing labeling that with words
26:46may be describing how it feels in
26:48our body or our reactions to it.
26:50And then once we feel like we've
26:53gotten a good handle on what is here,
26:55if it's not helpful to stay here,
26:58like Doctor Feja mentioned.
26:59If it's not a solvable problem,
27:01if it's no longer helpful for
27:03us to keep returning
27:04to what we're thinking about, then,
27:06then shift to participating in something.
27:08Do something that we can
27:10throw shows fully into,
27:11and try to be as present as we possibly can.
27:15And again, I realize I'm making this
27:17sound really easy, and it's not.
27:19It takes a lot of practice and maybe it
27:21just starts with 20 seconds at a time
27:24just sitting quietly for 20 seconds,
27:26because how often is it that
27:28we're getting distracted by things
27:29around us like our phones buzzing
27:31at us or emails chirping at us?
27:33Some somebody needs our attention
27:34in it very often,
27:36even when we're doing things like eating.
27:38We're also doing something
27:39else at the same time,
27:40so I would challenge everyone here today
27:43to find a minute or two were in if.
27:45We have time.
27:46Perhaps we can come back around and try that
27:48at some point throughout the presentation.
27:50Just take a minute or 30 seconds just
27:52to be still and notice what we notice,
27:55but that's where you start is starting
27:58to pay attention to what's going on
28:00inside of you and outside of you.
28:03OK,
28:03what to do instead of stuffing it,
28:05get it out somehow.
28:06It doesn't have to be if you don't
28:08have people in your life that
28:10you feel like are good supports.
28:12If you've have a dog or a
28:14cat that you can talk to.
28:16If there's a support group that
28:17you feel it could be helpful,
28:19you could get a therapist.
28:21You could start an anonymous blog.
28:23You could journal and then
28:24tear it up or burn it there.
28:26All different ways to get your
28:28emotions out without necessarily
28:29needing to tell anyone about it.
28:31If it feels like it's too private
28:33or that people won't understand.
28:34Oftentimes,
28:35cancer can be a pretty isolating experience
28:37when you're the one going through it.
28:39And even though there might
28:40be other people who have some
28:42idea of what that's like,
28:43your experience of it is your own,
28:45and sometimes it's helpful,
28:46helpful,
28:47just to to talk to yourself about that.
28:51You can also do this as some of
28:53the things that have been mentioned
28:54before doing some breathing exercises,
28:56slowing down your breathing is a quick
28:58way to get your body to calm in your mind
29:00to calm having hot bath, having a nap,
29:02going for a walk, visiting friend,
29:04lots of different ideas of what this
29:06could look like and you can tailor them
29:08according to what works best for you
29:10and where you are in your treatment.
29:12So if you are struggling with nausea,
29:13if you're feeling exhausted,
29:15maybe you're not going to go for a hike.
29:17Maybe there's something a little
29:18more low key that you could try.
29:21And if you're one of those people
29:22that looks at me perplexed when I
29:24ask them what they do to relax,
29:26then maybe these other strategies
29:28could be helpful.
29:28Maybe you could clean the house
29:30or clear out of cover it,
29:32or pay some bills.
29:33Cross some of those things off the To
29:35Do List if that's something that helps
29:37you feel like it takes your mind off
29:39things and help you feel accomplished,
29:41it's both and and I often hear
29:43when I ask people what they do
29:45to cope or to occupy their time,
29:47they tell me about tasks and so
29:48with Doctor Fay house questions
29:50of what actually makes you feel.
29:52More alive, maybe less bill pain,
29:54but if that's your thing and that's
29:57what makes you feel really good,
29:59do that great.
30:01No judgement here, so second myth.
30:04The idea that if I'm struggling
30:06and must be weak,
30:07are there's something wrong I should
30:09be stronger or the alternative
30:11version of this that I often hear
30:13is that needing help me instead,
30:16I've failed, and again,
30:17that's just simply not true,
30:19and the reason why I know that for
30:21a fact not to be true is that what
30:24our research tells us about people
30:26who have been diagnosed with cancer
30:28is that almost half have significant
30:31distress following diagnosis and
30:33treatment in distress is sort of
30:35a catch all word.
30:36And what that means is that we're
30:38having trouble some kind of emotion
30:40in response to the diagnosis.
30:41It doesn't have to be to the level of a
30:44depressive disorder and anxiety disorder,
30:46but that's still nearly half of people
30:48who are really feeling like their
30:50lives have been interrupted by this.
30:52And so you are not alone in that.
30:54And it's actually probably more
30:56common than you're going to find
30:58people that know what you're
30:59talking about when you talk about
31:01this being impactful than not.
31:03And it is true that people have been
31:06diagnosed with cancer are at higher
31:08risk for anxiety and depressive
31:10disorders than the rest of the German
31:12population of people who have not
31:14been diagnosed with cancer nearly
31:16half or over half of patients are
31:19prescribed a psychiatric medication
31:20during their treatment and that we
31:23know that it is extremely common for
31:25patients to struggle with insomnia,
31:27fatigue and pain sometimes even
31:28well beyond when treatment is
31:30completed. So you're in good company
31:32if you're having a hard time sitting.
31:35It doesn't mean you're weak.
31:36It means that you are dealing with a life
31:39threatening illness that is requiring
31:40you to engage in toxic, expensive
31:42treatments over a long period of time.
31:44And he had this big thing dropped in
31:46your lap that is screwing everything up.
31:49So of course you would have
31:50a response to that.
31:51And of course you would have
31:55difficulty managing that.
31:56So what do we do instead? Ask for an.
31:59I would also say and accept help.
32:01I know depending on where people are
32:03and their treatment at their diagnosis,
32:04they may not know what they need for help,
32:07but it may take some time
32:09before you realize that.
32:10And it's OK to ask again.
32:12And to be specific about what it is,
32:14you need some people in your life might
32:16think it's helpful to come over and watch
32:19your kids would really what you might
32:21want them to do is to cook a meal for you,
32:24take out the garbage,
32:25clean the house for you.
32:27I also know your audience,
32:28so if you've had the experience maybe of
32:31asking for help before an hasn't gone,
32:33well,
32:33there could be lots of reasons for that,
32:36but one could be.
32:37Maybe the people you're asking aren't
32:39great at the type of help that you need.
32:41Some people are better at emotional help.
32:43Other people are better at practical
32:45help and some people aren't great at
32:48continuing to ask if you need help,
32:50so you might need to to reach
32:52out to them as well.
32:53Very often it seems to be that that
32:56people experience that there's
32:57more help than they realized.
32:59When they ask and it maybe comes from
33:00sources that they wouldn't have expected,
33:02and so it can be surprising
33:04where the help comes from.
33:06You can also outsource the help so
33:08your treatment team are wonderful
33:10social workers that people have been
33:13working in cancer for a long time.
33:15Hear about different organizations
33:17and different avenues for getting
33:20help that you may not be aware exist.
33:23So you don't have to just stick
33:25with the people that you know you
33:27can reach out and ask for help with
33:30people that you don't know as well.
33:32How what to do instead?
33:33Talk to yourself, but be better at it.
33:36So we tend to be really critical of
33:38ourselves and say things to ourselves
33:39that we would never say to somebody else.
33:42I even catch myself doing this and
33:44you know I'll drop something to say,
33:46you idiot,
33:46I would never say that to my partner
33:48if he dropped something I would
33:50say I don't worry about it.
33:52It's not a big deal.
33:53Why do I say it to myself?
33:55It's not very kind and it certainly
33:57doesn't help the situation.
33:58In fact,
33:59it might actually make me feel worse.
34:01But we also want to be careful
34:03here and not go towards so we
34:05want to be somewhere in between
34:07Pollyanna and drill Sergeant so we don't
34:09want to be really harsh on ourselves
34:10but neither do we want to be excessively
34:12positive to the point where we don't
34:14even buy what we're telling ourselves.
34:16We're somewhere in the middle little
34:18engine that could I can do this.
34:20I'm stronger than I think I'm OK right now.
34:22Right now I'm safe.
34:23Right now I'm healthy.
34:24My mind doesn't always my friend,
34:26just a reminder that sometimes our
34:28minds can play tricks on us and tell
34:30us things that aren't necessarily true.
34:32It can be really unhelpful.
34:35And lastly, practicing self compassion.
34:36I mentioned an instance where I wasn't
34:38being very compassionate towards myself.
34:40So what that looks like simply
34:42is being as kind to yourself as
34:44you would be to other people.
34:46This little cartoon here says they said
34:49treat Someone Like You love yourself
34:51and the little guy says don't forget to
34:53treat yourself like someone you love too.
34:55Especially right now,
34:56especially when you are the most
34:59challenge is when you need to
35:00draw on the most compassion for
35:02yourself and kindness for yourself.
35:04It also means that that might.
35:06Be the time when it's hardest,
35:08so you might have to dig deep and and be
35:11intentional about being kind to yourself.
35:14OK,
35:14this is my last slide.
35:16These are just some resources to help you
35:18get started on doing some of these things.
35:20If it helps it take a screenshot,
35:22I know that these are being
35:24recorded and being placed on lines.
35:25You can also find them there.
35:27There are some apps to help
35:28you get practice started.
35:30Practice with mindfulness with breathing
35:31exercises all of almost all of these
35:33things are free if they're not,
35:34they at least have a trial
35:36period that you can start.
35:37There is also some websites here
35:39for resources for mental health
35:40for task and financial resources
35:42and for peer support as well,
35:43so there are some really great organizations
35:45that will connect you with somebody
35:47with a similar diagnosis and treatment.
35:49To you and you can talk to them.
35:51And it's free.
35:51No,
35:52thank you so much and I wanna take
35:54anymore time.
35:55Let it move on from here.
35:57Thanks so much.
35:59Thanks so much Doctor Clovis appreciate that.
36:01And yeah, I feel like I.
36:03I learned a lot from that.
36:05I love that graphic.
36:06You had the end with the elephant
36:08in the fox and making sure
36:10that you love yourself too.
36:12And you know I know something we hear
36:14similar from people missing in clinic.
36:17That concern they have with
36:19their the caregiver for so
36:20long for their loved ones,
36:21and then having to transition and be the
36:24one that scared for absolutely I meant
36:26to mention that that this may be
36:28the first time you've not been the
36:30helper and you're you're needing
36:32the help and that can be hard.
36:34So be compassionate with
36:35yourself around that too. Yeah,
36:37I love that. I wanted to mention Joseph
36:40said in the chat other ways of coping.
36:44He said I found doing volunteer work
36:47and service to others helps coping.
36:50I think it's wonderful.
36:53Alright, so just quickly before we get
36:56on to add I will post the website for
36:59everyone where you can find the recording
37:01of this Milo share session tonight.
37:04It will also be where all of the
37:06recordings are in all of the
37:08wonderful videos and content.
37:10Moving posting all month long
37:12and will continue to through the
37:14remainder of this week and you.
37:16That website will never go away.
37:18It will always be there for access,
37:20open resources to celebrate
37:22survivors this month.
37:23Anan beyond.
37:24So add without further ado,
37:26an certainly last but not least,
37:28I will pass along to you.
37:30Be able to share the screen on your end.
37:33I'm gonna give it my best shot. If
37:37not, I have ready to go to and you can
37:39just tell me when to click through
37:41to do OK. Let's see my. See, I am I
37:46don't alright why don't I'm gonna share
37:48the screen and then you can just
37:50tell me when to forward ahead just
37:53say next or whatever works for us.
37:55OK so bear with me just a second sure. OK.
38:01Alright, does this
38:03look familiar? It looks very familiar.
38:06Yes? OK, yes, there we go. OK alright so.
38:13I I. What you heard some really important
38:19information from from Doctor Feja Nan
38:21from Doctor Quelques and for the first
38:24part of what I'm going to be presenting,
38:27I'm going to switch gears just a little bit.
38:30I I've got a sense that many of you
38:32in survivorship may have gone through
38:35the palliative care clinic possibly.
38:38I mean, I'm not not going to guarantee that,
38:41but there's probably a sizable
38:43number of you have,
38:45and I just wanted to cover some of the myths.
38:49Versus some of the facts
38:51regarding palliative care.
38:54Devon, you can hit the OK,
38:56so a question for everybody and I'll
38:59give you time to think about it.
39:02I what comes to mind when you hear
39:04the words palliative care and I found
39:07this piece of clip art which I found
39:11was was rather interesting because
39:13it it kind of represents really all
39:15this sort of crazy, you know, sort of.
39:20Conglomeration of different words
39:21and phrases that people think of
39:24when they think of spelling of care.
39:26Summer accurate.
39:26Some are not,
39:28so I'd be interested to hear
39:29what what your some of your
39:32thoughts are just quickly.
39:36I'm gonna quickly stop the share
39:38here while I open the chat up, OK?
39:42No problem OK. Will give people
39:45a few moments and feel free
39:46again to enter into the chat.
39:48Some thoughts of what you think
39:50of when you hear palliative care?
40:03Heart.
40:06So some people saying here might die soon.
40:10Pain management and comfort.
40:12No family to care for you.
40:15End of life care care during
40:17Hospice, end of life care.
40:22So those are all.
40:26Very interesting and very representative.
40:28Very representational of what many
40:30people think of when they hear
40:33the term palliative care. Another
40:35one add post treatment. Symptom management.
40:38OK OK which is which is more more
40:41along the lines of being accurate?
40:44That's it's, it is.
40:46It is the the big myth is that it's
40:49it deals we're dealing with people who
40:52are dying all the time and that we
40:55were covering where we just we are.
40:59We're speaking to people about
41:00end of life constantly.
41:02That is far from what we do.
41:06In fact, if we could go back
41:08to the slides, we
41:09can OK right here.
41:12So I'm going to clarify a little bit
41:14of about some of those misconceptions.
41:16It seems like the majority of you
41:19do have that sense that we are
41:22dealing with end of life care most
41:25of the time the word palliative.
41:27Is used interchangeably with
41:30within the palliative care.
41:33Within palliative care and
41:36within Hospice care palliative
41:38palliative means is comfort.
41:43In terms of what we do in palliative care,
41:46yes, we are dealing in comfort care,
41:48but we're we're doing that in a
41:51way that we're trying to alleviate
41:53the cancer pain and that that.
41:57That doesn't mean that you can't.
42:00You're no longer in treatment,
42:01it just means that you're you're.
42:04You've got discomfort due to your disease
42:06and you need another level of support,
42:09something that's going
42:10to help you through that.
42:11That period of uncomfortable.
42:14Pain and those feelings.
42:17Hospice, on the other hand.
42:21It's used for their because
42:23that's what they do.
42:24They're doing palliative treatment
42:26really to keep you comfortable
42:28through the end of your life and so,
42:31and it's a necessary.
42:34Necessary piece of care, but it's it's.
42:37It's the opposite of really what the
42:40palliative care team does overall.
42:43So if you can.
42:46Gavin, go to the next slide.
42:50OK So what is palliative care?
42:55So the overarching mission of
42:56palliative care is to aid people with
42:59serious illnesses such as cancer.
43:01To feel better.
43:02It accomplishes this by providing how
43:04a holistic approach to treating the
43:07physical and emotional symptoms that
43:09arise from the effects of disease and
43:12its various treatments approaching the
43:14needs of patients and families through
43:16a combination of pain management,
43:18psychosocial and spiritual interventions.
43:20The ultimate goal is to lead the person
43:23being treated and those caregiving.
43:25Tord, an improved quality of life.
43:29And I think you know that I'm I articulated
43:33better in my in my printed word that I do.
43:37Then I do verbally,
43:38but but that is that is pretty much what
43:42I I feel is is very is is should be the
43:46clear message of what palliative care is?
43:50There's?
43:50There's more.
43:51Can you continue?
43:52Javin thank you.
43:56Palliative care,
43:57in its most advantageous form,
43:59is a collaborative interaction among
44:01members of the medical and oncology
44:04teams that includes physicians,
44:06APR ends and peas, Piese, an RNS,
44:09and the ancillary disciplines,
44:11including social work, psychology,
44:13spiritual care or therapy.
44:15Integrative medicine,
44:16which we make a great.
44:18We make use of all of those,
44:21and again, it's a holistic approach.
44:24We we all recognize our strengths.
44:27Which is very important.
44:29You know the there's heart hierarchy,
44:31obviously, and in most teams.
44:33But in palliative care we all
44:36recognize our strengths and and
44:38everybody is respected for what we
44:40provide to our patients and their
44:43families and the other piece of this
44:46is that it should be encouraged.
44:48The idea of palliative care should be
44:51encouraged as an option to patients and
44:54families if at all possible, when the.
44:57Illness is diagnosed and this is a. A pet.
45:04It's a pet peeve, but it's also a pet.
45:07It's.
45:07It's also a very fundamental thing
45:09that I think is very, very important.
45:12I don't think it's the pet peeve.
45:14Part comes from the fact that I don't
45:17think it's it's explored enough at
45:19the time of diagnosis and I really
45:21think it's an important thing and it
45:24should be something that's you know.
45:28That the medical community community
45:30should probably look a little bit more.
45:34Depth about because it it will
45:36aid individuals to overcome any
45:38fears or misconceptions they have
45:40and make it for an easier,
45:42more educated decision and
45:44ultimately more able to accept
45:46what palliative care has to offer.
45:48It is important to remember that
45:50the services available throughout
45:52currative curatives treatments
45:53during follow up and if needed,
45:56as a bridge to Hospice at the end of life.
45:59That being said,
46:01palliative care is not a should but a choice.
46:05And I just want to go back to that
46:08piece about it being a bridge
46:10to Hospice at the end of life.
46:13That's a very important piece,
46:15but again, it's a small piece as I,
46:18as one of the doctors I work with
46:21has explained to patients at times.
46:23Palliative care is a very sort
46:25of large sort of circle,
46:27an within that there's this
46:29tiny circle called Hospice care,
46:30and that's an important thing to realize so.
46:35So again, when we were talking about.
46:39End of life. It's a small.
46:41It's a small piece.
46:42In next slide,
46:44Gavin.
46:46And most of all, palliative care is
46:49about helping patients and families
46:52live live in a more protective,
46:54productive environment focused on living and
46:57explore ways to find meaning in their lives.
47:01So that's the basic underlying message
47:04of really, what palliative care is we we?
47:08We talk so much more about
47:11life than we do about death.
47:15So, and I think that's an important piece,
47:18given that as that we we,
47:21we do explore ways to find meaning
47:24in their lives, I'm going to.
47:28I'm going to trance, make up a.
47:34I'm going to go to the next slide and
47:36talk about something called meaning
47:39centered psychotherapy and this is Duane.
47:42Before you do that, a question
47:44came in Sherman the attendees.
47:46Does insurance generally cover
47:47the cost of palliative care
47:49from the time of diagnosis?
47:51Yes it does, as long as there is a referral
47:55made to the to the palliative care team.
47:59It is part of. It will be covered
48:01by your insurance, not an issue.
48:05It's it's just a matter of of
48:08your doctor making that referral.
48:10It's it's pretty.
48:11It's pretty basic, pretty simple.
48:13Thank you. Yeah, thank you.
48:16Thanks for that question.
48:18So meaning centered psychotherapy.
48:20One of the ways patients and caregivers
48:22may be guided in finding meaning in
48:24their lives is through a therapeutic
48:27intervention originally developed
48:28for patients who are in advanced
48:31and or active cancer treatment.
48:33Next slide.
48:38And the the concept of meaning centered
48:41psychotherapy was was started by this guy.
48:44William breit. Bart doctor.
48:46William Breit, Bart,
48:47who is a psychiatrist and author.
48:49He's head of psychiatry at at.
48:53Memorial Sloan Kettering and he's he
48:56is the creator of meaning centered
48:59psychotherapy and just to read a
49:01quote of his that he wrote for a
49:04as a forward to A to a manual.
49:07He wrote creative sources of
49:09meaning are especially important
49:11resources for patients in despair.
49:13I have thought of creative sources
49:16of meaning as including the aspects,
49:18values, efforts, creative processes,
49:20etc that go into the process
49:22of discovering your life.
49:24And that's a that's a primary tenant
49:27of what really meaning centered
49:29psychotherapy is about next slide.
49:32I don't want to take too much time,
49:36and this guy is is Doctor Viktor Frankel
49:40and he is the person who doctor Breit,
49:44Bart based a good portion of his.
49:49His his therapy of his meaning
49:51centered psychotherapy on he's a
49:54psychiatrist was a psychiatrist,
49:56was a philosopher and author,
49:58and a Holocaust survivor and a creator
50:01of something called Logotherapy,
50:04which was, which is something that.
50:08That meaning, such as psychotherapy,
50:10takes a lot a great deal from
50:12in terms of its philosophy,
50:15and I'll just read what he wrote from
50:18his classic book man's search for
50:20meaning we must never forget that
50:23we may also find meaning in life.
50:26Even when confronted with a hopeless
50:28situation when facing a faith faith,
50:30a fate that cannot be changed.
50:33For what then matters is to bear witness
50:36to the uniquely human potential at its best,
50:39which is to transform a
50:41personal tragedy into triumph.
50:42To turn one's predicament into
50:45a human achievement.
50:46When we are no longer able
50:48to change a situation,
50:50just think of an incurable disease
50:52such as an inoperable cancer.
50:54We are challenged to change ourselves.
50:56I'm not going to really try to
50:58explain what what Doctor Frankel says.
51:00I think I think it's everybody
51:02can interpret it for themselves,
51:04and I think it's pretty clear.
51:07Hum.
51:12As to what you think it means? Next slide.
51:19So what is meaning centered psychotherapy?
51:21Its purpose? To affirm the possibility
51:24of experiencing creation of meaning
51:26even in the face of advanced cancer
51:29and potentially limited prognosis.
51:31It has been expanded to be used in a
51:33variety of settings. People whoops.
51:44Thanks John, it has been.
51:46It has been expanded to be
51:49used in a variety of settings.
51:52People with terminal illnesses,
51:54caregivers, bereavement groups,
51:55substance use, disorder groups and
51:58even the medical workplace for for
52:01a medical workplace for employees.
52:04Up to 8 participants in their
52:06discovery Re connection,
52:07maintenance and even enhancement
52:09of a sense of meaning in their
52:11life and to facilitate greater
52:14understanding of meaning.
52:18I also just want to add that when
52:21I when I use this with patients,
52:24I use it as a do it in Group form and I
52:29also do it individually with individuals.
52:32I've even used it to help couples,
52:35especially people who are having
52:37a difficult time finding meaning
52:40together as a couple and being able
52:42to sort of broach the topics that are
52:45so hard to come by in that sometimes.
52:48Does cover end of life because
52:50it's sometimes it's a.
52:51It's a topic that people don't
52:54necessarily share with one another
52:56until it's much later in the.
52:58You know in the process,
53:00so it's been helpful.
53:02That way people have been able
53:05to sort of confront that.
53:07And and talk about it in a
53:09much more open way.
53:10I've had people talk about the
53:12fact that they've they will after
53:14one session they will talk for the
53:15next week about about that session.
53:17What's coming up for the and what's
53:19going to be coming up for the next
53:21session and have all their questions
53:23and homework ready to to be to talk about,
53:26which is pretty.
53:27Pretty amazing and pretty awesome.
53:29When I when you think about it that
53:31they were able to do that and it's
53:33an I'm not taking credit for that.
53:36This is all about this.
53:38This therapy it's pretty pretty amazing.
53:40People really do connect in Group,
53:43even in fact after that,
53:45maybe the first session you will see
53:49how people in just this in the in
53:52the course of an hour to an hour and
53:56a half how much they've they they
53:59have connected with one another and
54:02can't wait for the next session so.
54:05Next he who has a why to live
54:09can bear with almost any how?
54:13And that's Friedrich Nietzsche for
54:15people who are familiar with that,
54:18that phrase, but. If it's it's it's
54:22very important to remember that
54:24we all have reasons to live even,
54:27even if we think that the scope
54:30of our lives are shrinking,
54:32there's always new ways of finding hope.
54:36And finding new things to discover
54:38about ourselves that we may not have.
54:43Discovered before that.
54:46So it's you're always in a
54:49place where you can, I think,
54:52discover something new.
54:54About who you are and and and how
54:58you want to continue producing
55:02legacy and living a legacy so.
55:06Next, so the last thing I'm leaving
55:09everybody is what does meaning mean to you.
55:12And I think Doctor Fei Han had
55:14sort of asked that question at
55:16the beginning of his his talk.
55:19And I want people to continue
55:21thinking about what that what it,
55:23what it means to you and maybe
55:26even if you'd like to.
55:28I know it's a lot to to ask
55:30of people to share something.
55:32Maybe as intimate as what
55:34meaning means to them in.
55:36In a large group,
55:38but if you're willing to please do so,
55:41and I want to thank you all and thank
55:44you all for your patience, thanks.
55:47OK.
55:48Thanks said I'm going to go ahead
55:50and stop this year so everyone
55:52can feel so again that was great.
55:55And yeah I want to invite everyone I know
55:57where just over the hour here at 8:01
56:00we're going to go a little bit longer here.
56:03We also want to be mindful of
56:05everyone's time though and understand
56:07that you have to get off.
56:09I'm going to go ahead now and post
56:11the link for the website where
56:13you can find this presentation.
56:15The whole smiles share session as well
56:17as other content from the month there.
56:20So everyone can use that link to go to.
56:23After this is done and see,
56:24this whole presentation will go all
56:26the way through until we're done here.
56:28If you can't stay with us,
56:30but going back to Ed's question,
56:32what is meaning mean to you? Anne.
56:35Ann, if anyone wants to chime in in the chat,
56:39we can do that.
56:39And then I saw a few other
56:41questions came in as well.
56:43We can answer after that.
56:45And if you have questions in general too,
56:47feel free to type that in.
56:52What does meaning mean to you?
56:55And go ahead, you were going to say
56:57something. I'm sorry I was no,
56:59I was just going to say something.
57:01'cause I see that Elizabeth left a question.
57:03Yeah, in the Q&A that is that asked,
57:05I said I was not offered palliative care
57:08and had to figure out a lot of my own.
57:11The only time I have seen palliative
57:14care offered is just prior to Hospice.
57:16How can we better inform
57:19patients on palliative care?
57:21Excellent question and I wish I had a
57:25definitive answer other than the fact
57:27that if in a perfect world I would,
57:30I would love to sort of just to
57:33collect all the the oncology teams
57:36and just educate them because I
57:39this is not to to badmouth anybody.
57:42But I have heard from plenty of patients
57:45say that they have heard from a cologist
57:49when they have asked about palliative care.
57:52You don't, you're not ready for that yet,
57:55and so there is a there is, say.
57:59Quite a divide there you know and
58:02people and how do we fill that is
58:04just by educating and and educating,
58:07educating, educating as much as we can.
58:09I mean that's that's about what
58:11it comes down to.
58:13Any chance you get?
58:14And if you really feel that you
58:16want and I've had patients do this.
58:19They've seen our flyer.
58:20If they really want to be in.
58:23If they do want the services
58:25of palliative care,
58:26ask your provider.
58:27And know that your provider all your
58:32provider has to do is is request a.
58:35A referral to us and your your
58:38chart will come through to us
58:41will take the the team will take a
58:45look at it and give it yes or no.
58:48In most cases of TS.
58:52So it's always worth asking.
58:54I mean and advocating for yourself.
58:56I mean, I think that's the biggest.
58:58That's the big message.
59:00So yeah,
59:01that's that's a great
59:02point. Add into that point.
59:04You know, as a physician assistant myself,
59:07you know it's so important for us to
59:10have that education as providers.
59:13As to what palliative care
59:15actually offers for our patients,
59:17and when we should be referring
59:19people to palliative care.
59:20And I would agree in second your message.
59:23And if you're working
59:25with your oncology team,
59:26your care team and you feel that
59:28you would want palliative care
59:31services or have questions about it,
59:33I would encourage you to ask your provider,
59:36ask them about it and what
59:39can be offered for you.
59:41And yeah, absolutely,
59:42there's another
59:43question from Janet and she asked
59:46how can someone find a meaning
59:49centered psychotherapy group?
59:51So in June I'm, I'm assuming that you're
59:55obviously part of of of survivorship,
59:58so I'm going to ask Angela to
01:00:00speak to that because she's
01:00:02the one who who runs the the
01:00:06survivorship meaning centered group.
01:00:08I think you still do right,
01:00:11Angel, I mean well.
01:00:15Prior to COVID, yeah, actually no.
01:00:18In all seriousness, prior to COVID
01:00:22I was regularly facilitating a
01:00:25meaning centered psychotherapy group
01:00:27for cancer survivors and the group
01:00:30itself runs about 7 to 8 weeks.
01:00:33And we like to keep the group very small,
01:00:36usually forward to six or seven.
01:00:38Uh, people, because it's very in
01:00:40depth and a lot of processing,
01:00:43and there's homework involved and so forth.
01:00:45I'm hoping now that things have
01:00:47started to open up more that I'm
01:00:50going to be able to start another
01:00:52meeting with their servers.
01:00:54So if you are interested I do work at
01:00:57the New Haven Smilow Luke location.
01:00:59You're welcome to email me your
01:01:02name and contact information and I
01:01:04put you on my waiting list and my
01:01:07hope is to possibly have something
01:01:09start up again in the fall.
01:01:13So my email is angela.corolla@ynhh.org.
01:01:19And actually my my direct telephone
01:01:21number is 2032 hundred 6360,
01:01:24so I'd love to have you participate.
01:01:27And I know that Ed himself was
01:01:30also facilitating meaning center
01:01:32groups for more end of life care.
01:01:35Is that correct
01:01:36for people with advanced inactive, right?
01:01:39So? And still doing that,
01:01:41I Co facilitate that with.
01:01:45Our senior a PRN on the palliative
01:01:48care team, Leslie Blatt so.
01:01:52So and we we try to make that as consistent
01:01:56as possible after each eight week session.
01:01:59Well, we'll take a two to four week hiatus
01:02:03just to to recruit new people for the group.
01:02:08It's eight sessions long,
01:02:09eight straight Wednesdays in our case,
01:02:12for about an hour to an hour.
01:02:15It's about an hour and a half
01:02:18each each session, and. We are.
01:02:22Always looking to looking out for
01:02:24people who want to participate,
01:02:27so that's so.
01:02:30Thank you for
01:02:31that. Just want to add that smile oh
01:02:34is really undertaking a big project
01:02:36to expand a lot of their offerings
01:02:39and part of what I'm advocating for
01:02:42is more groups like meaning centered
01:02:45psychotherapy being offered across
01:02:47disease sites and into as many people
01:02:49as we can reach them and just smile.
01:02:52It is also undergoing sort of a big
01:02:55push to make it more clear to patients
01:02:58what is offered when. How to access it?
01:03:01Yes, a lot of these things.
01:03:02I even find it difficult to
01:03:04find sometimes and I should.
01:03:06I have all the terms and things
01:03:07that that I know to search and
01:03:09still can't find it at time.
01:03:11So there will be some changes coming soon
01:03:13where not only more will be offered,
01:03:15but it will be easier to find.
01:03:19Great, that's great. Yeah,
01:03:21that's really good to know.
01:03:23Especially, you know such a big system.
01:03:26It's it's not easy,
01:03:28especially for those looking in.
01:03:31We had another question come up in the
01:03:33chat a little bit earlier and I did want
01:03:35to make sure we got to it, Mary says.
01:03:38I sometimes find it hard to have
01:03:40self love when the person the
01:03:42mirror is so different an in
01:03:45quotes less than what you were.
01:03:47How do we continue to find that self love?
01:03:52It's a great question and I
01:03:54bet we all have something to say about it,
01:03:55so I'm going to take a backseat
01:03:57because my instinct is to jump in
01:03:59and talk a lot, so let somebody else.
01:04:07I'll start, but I'll ask my
01:04:10colleagues to jump into New Mary.
01:04:12That's something that a lot
01:04:14of people struggle with,
01:04:16not alone in that question of that feeling.
01:04:20A lot of people feel like their
01:04:22whole life is changed as a result
01:04:24of cancer in all kinds of ways,
01:04:27physically and otherwise.
01:04:29I think it takes time.
01:04:31I think it takes some patience
01:04:33and examining what you do have.
01:04:38And looking less at what you may
01:04:42not continue to have I mentioned.
01:04:46Importance of flexibility.
01:04:48Before there was a French philosopher.
01:04:52And Ed and Angela probably know
01:04:54who I'm going to refer to,
01:04:56'cause it comes up in the
01:04:58meeting center therapy.
01:04:59His name is Jacques Derrida
01:05:01and he wrote about that.
01:05:02There are ways of being in this world
01:05:06and ways of doing in this world.
01:05:08Cancer is one of those things that affect.
01:05:12Our ability to do certain things sometimes.
01:05:14You know we can't.
01:05:16Jog or swim or our lives have changed that.
01:05:21Affect how we do things,
01:05:23but we still have a core way
01:05:25of being in this world.
01:05:27And so I think to answer your question,
01:05:31sometimes it comes back to reconnecting
01:05:34with that core part of yourself
01:05:36and to Ed's point about meaning
01:05:39that reconnecting to the things
01:05:41that are meaningful in your life,
01:05:44whether it's your faith or
01:05:46your family or nature art,
01:05:48those things that connect to your core.
01:05:51So I think that's that's
01:05:53one way to start at least.
01:05:59And if I could just add to what
01:06:02doctor Pehan so eloquently described,
01:06:05I had a cancer survivor once told me
01:06:09that cancer is a comma in her life.
01:06:13And that she's so much more than that.
01:06:16She's a daughter.
01:06:17She's a friend. She's a sister.
01:06:19She's a mom. You know, she,
01:06:20you know whatever she did for a living.
01:06:23And so again,
01:06:24it's within you and thinking about
01:06:26what brings purpose and meaning
01:06:28to your life and going deep,
01:06:30like what Doctor Fei Han said to
01:06:32that core and really thinking about
01:06:34those things that bring that meaning.
01:06:36You know your life.
01:06:39And I and I would just encourage
01:06:40you to do that.
01:06:45Yeah I would just second
01:06:47with Doctor Fan and Angela.
01:06:48Both said I think you know remember
01:06:51that you are not your disease.
01:06:54That's not who you are.
01:06:56Remember you were somebody
01:06:57before your disease and you
01:06:59continue to be that person.
01:07:01You may not look.
01:07:03You may not feel exactly
01:07:04the way you always have,
01:07:07but underneath and is that cafe
01:07:09Han said if you go deep enough
01:07:12you'll you'll realize that you
01:07:14are still very much that person.
01:07:16And you are entitled to tell people
01:07:19that you are still that person.
01:07:21And show that you're still that person so.
01:07:27Doctor Vahun mentioned John Cabots in who
01:07:29is a teacher and researcher of mindfulness,
01:07:32and in one of the meditation exercises he
01:07:35does that I really like is called a mountain
01:07:38meditation and the idea being that we
01:07:40imagine that that were the mountains are,
01:07:43you know, we're solid or immovable,
01:07:45and then he guides us through
01:07:47how the seasons change.
01:07:48Tourists come on the mountain when
01:07:51the when it's beautiful outside and
01:07:53there's no clouds in the sky and they
01:07:55comment on how beautiful the mountain
01:07:58is in the winter comes in there.
01:08:00Complaining about how cold it is
01:08:02and it's windy and there aren't
01:08:04any nice leaves and so all of these
01:08:07things around the mountain change
01:08:08overtime an over circumstance,
01:08:10but the mountain itself is unchanged and
01:08:12I really like that image because I think
01:08:15it speaks to what everyone has mentioned,
01:08:17which is that there are parts
01:08:19of us that we hold on to,
01:08:21even in the midst of some of
01:08:23our most tragic circumstances.
01:08:25And it is so normal and human
01:08:27and absolutely the way our brains
01:08:29work to focus on the change.
01:08:32And what we've lost,
01:08:33but it doesn't have to be either.
01:08:35Or it can be both,
01:08:36and we can both grieve what
01:08:38we've lost and also look tored,
01:08:40who we still are.
01:08:41And maybe the changes that we want to
01:08:43make or who we want to be moving forward,
01:08:46because it can also be an opportunity
01:08:48to do things differently.
01:08:50Doesn't have to be there as I have
01:08:52a patient who just told me last week
01:08:54I I don't want cancer to change me.
01:08:56I don't want to find meaning in it.
01:08:58I don't want to have this big
01:09:00spiritual awakening.
01:09:01I just want to get through it
01:09:02and that's OK too.
01:09:07I think that's a good thing about
01:09:10this is that on a broader level,
01:09:12it's an individualized path
01:09:13or an individualized journey,
01:09:15and you know people discover what
01:09:17works best for them and it kind of
01:09:20goes back to some of those myths.
01:09:22Two that you mentioned where you know
01:09:25it's you know you're told this is
01:09:27the best way to do something well,
01:09:29the best way is your way in
01:09:32what works best for you,
01:09:34and that's what has been a
01:09:35theme that I see working.
01:09:37In the survivorship clinic.
01:09:44Alright, so we're getting a few
01:09:46people chiming in in the chat here.
01:09:49Just saying thank you for all the
01:09:52information. Finding it very
01:09:54helpful and the source of
01:09:56information and the presenters and
01:09:58we have people who have come back
01:10:01for multiple sessions, maybe even
01:10:03all four who have thanked us for.
01:10:07For that over the weeks and you
01:10:09know, I want to encourage people to
01:10:11continue to ask questions. You
01:10:13know, if there's anything else left
01:10:15on the table that maybe we didn't
01:10:17get to. But with that, you know, I
01:10:20know where over the 8:00 o'clock
01:10:23hour we extended a bit further. I
01:10:26want to take a moment to thank
01:10:29everyone here. And for taking the
01:10:32time, our panelists and our
01:10:34presenters for joining us through
01:10:37all of the sessions. An obviously
01:10:40tonight as well. No, and then I'm
01:10:45talking back. I wanna shout out to
01:10:48the whole survivorship program and
01:10:50smiling at work as well. Everyone
01:10:52who made this possible special
01:10:54shout out to to. Heather Studwell,
01:10:57the survivorship coordinator down
01:10:59in Greenwich who helped make this
01:11:01very much possible as well, and
01:11:03Doctor Tara Sanft, who is the
01:11:06medical director of the
01:11:08survivorship program at Yale. So.
01:11:11First, first and foremost, though,
01:11:14it wouldn't be possible without
01:11:16everyone here joining us tonight
01:11:18this evening, taking time out of
01:11:20their own busy schedules and doing
01:11:22for their loved ones and for
01:11:24themselves to learn more and to be
01:11:27engaged in their own care. I think
01:11:29that's so important and I give all
01:11:31of you all the credit. You're also
01:11:35inspirational. And that's what this
01:11:38month is about. That's what
01:11:40survivors, national Survivors Day
01:11:42is about. It's about celebrating
01:11:45all of you and coming together to
01:11:49do so. And you know, maybe learning
01:11:52a few things along the way and also
01:11:56having fun. So thank you all for
01:12:00that. I did post the website again.
01:12:03It's HTTPS colon slash slash
01:12:06www.yalecancercenter.org/patientflashspecialty/survivorship.
01:12:07Slash CSD 2021. You know it's a
01:12:09mouthful, but I posted it there in
01:12:12the chat for all of you too. You
01:12:14can also just Google GAIL
01:12:16survivorship and go to the Yale
01:12:18survivorship website that comes up.
01:12:20It's the first link that appears.
01:12:22Click on the link that says learn
01:12:24more about our National Cancer
01:12:27Survivors Day celebration. This
01:12:29video will be posted there as well
01:12:31as all the smiles share sessions
01:12:33you tuned in tonight for Smilow
01:12:35shares holistic coping strategies
01:12:37for cancer survivors. We heard from
01:12:39some wonderful presenters here.
01:12:41Doctor Fei, Han doctor Gilkeson.
01:12:42Add our panelists, Angela Corolla
01:12:44and Brian Jim. We're here. Brian
01:12:46had to log off a little bit early,
01:12:49but he was here as well. And thank
01:12:52you for the team behind the scenes,
01:12:54Aliza fulsome. Renee got to Emily
01:12:57Montmelo, an everyone making this
01:12:59possible throughout the month. And
01:13:01like I said, first and foremost,
01:13:03thanks to all of you and happy
01:13:06National Cancer Survivors Day
01:13:08month. Enjoy your evening everyone.
01:13:11Thanks, take care.