SPEAKER 1: All right. So we can get moving along because we have-- we're so fortunate to have this group of people who is interested in sharing their experiences with cancer facilities in the class with all of you. They're each going to speak a little bit about their backgrounds, and then we're open up for questions. I have some of your questions here, but I'm always interested in people engaging from the audience. And I'll go to these questions if we need some-- a little jump start on that.
So I'm going to start with-- Bob Riter is going to-- who I met formally. My students worked with him on a project for a new design potentially for the Cancer Research Center, he's not with them in the same capacity, but he can-- right now, but he can tell you about that and then introduce the group.
BOB RITER: Thank you. Well, thank you all for having us. We're really very, very happy to be here.
Let me preface this by saying that my background is hospital administration. I know some of you are in the [? SWUNG ?] program. And I was in health care, and then I was diagnosed with breast cancer. You don't think about men getting breast cancer, but we do.
And this has been 21 years. I had a mastectomy, had chemotherapy. And that just thrust me into the cancer world.
And it's funny. Even during my hospital days, oncology was that one place that was kind of scary and I never really went to because it was just different. And I've really seen cancer from the other side.
And one thing that I really want to do today is to let you know that cancer is not one thing. And there are many different types of cancer. We have people here who are in treatment, people who have finished treatment, we have a couple spouses. Cancer just affects everybody in so many different ways.
And by having this panel, I want to give you an idea of the breadth of those experiences. And we'll tell our stories and then answer questions. And Barbara [? Lang, ?] I'm going to start with you if you could just give us a [INAUDIBLE] sketch of your experience.
BARBARA LANG: I will. It's a pleasure to be here. Thank you.
My name is Barbara Lang. And actually, I'm a hotelier. So for me, I think I see it through the eyes of being someone from hospitality.
But very quickly, 11 years ago, I was in good health and decided at 51 years old that it was time to get a colonoscopy. And I did. And lo and behold, I had a stage IIIC colon cancer, which is not terrific.
But nonetheless, at the moment, I can tell you I remember specifically where I was with my husband. And we were up in Freeport, Maine. And he said to me, well, you don't have cancer. Your colon has cancer.
And I said, well, it's kind of connected to me.
So that was his first reaction to it. And my reaction was-- some of us are sicker than others. I thought, I want to start a soup company because what does everybody want to do when someone has cancer? They want to give them something, and they have to eat soup.
And I literally started a preliminary plans on having a soup company, which did not go very far because the last thing I wanted was soup when I was in chemotherapy. I wanted pasta. And when they say to always have a little something in your stomach, I actually gained quite a bit of weight. And at the end of my chemotherapy, I was diagnosed with abnormal weight gain.
So talk about insult to injury [INAUDIBLE].
Because the first thing I also thought was, I'm going to lose weight. So, you know, dysfunctional woman. I don't know.
I also, actually, to channel all of this, I went ahead and I wrote in a journal. And then it became editorial. And I actually ended up writing a column for the Ithaca Journal for 12 months on my experiences, which if any of you are interested, I can just email it to you. It was just one person's perspective as I navigated through it.
In regard to some of the things that we were told that you were interested in, one is the physical space. So I had a port put in. I had aggressive chemo for a while.
And when I first went to the oncology suite where you get put in for your medicine, I just felt, boy, this ought to be more like a spa. I mean, it had-- because it was, like, you know all these units, and the windowsills were filled with just junk. And I went to Rachel [? Hodencamp, ?] who is the owner of [? Ross's ?] Spa. And I asked if she would work with me on plans of how you could make this room really much more amenable and calming.
And though it didn't really take off, I always felt that there would be a great deal of opportunity of just having it so that it didn't look like-- as sterile as it did. I also hated when they would put blankets on me that would have the name of the pharmaceutical company on it.
Don't ask me why. I know it was saving my life. But it was like, just get it off me. Just get it off me. I hated it.
And then she also was referring to how I navigated through it. You know, we all have to go to that place of figuring out how to do that. And it's so personal that I just know when someone has-- well, because I was so public with it, when I go to Wegmans, anybody who saw me would want to tell me about their colonoscopy, which was a little too upfront and close and personal for me, particularly in the produce section.
But it really-- it did channel it for me. But when people say, oh, you should do this, you should do that-- and I always felt like don't let people should on you. Don't let-- that's a joke. Don't--
But it really is so personal that it's not about what someone ought to do. Everybody finds that channel. And I found it in the way of writing, and I found it just in ways that were nourishing for me to be able to do it.
And one of the questions was in regard to the people-- the kind of interaction you want to have with people. I can just tell you that the staff was remarkable, in my experience. So were the doctors. I mean, I have to say I had a great oncologist.
Two years ago, when I saw Dr. [? Garbo, ?] and he said, you know, I really don't have to see you anymore-- and I looked at him, and I said, are you breaking up with me?
And he said, we don't have to. I said, no it's OK. But you, know even though it's been a long time, every time I went back for a checkup, I get squirrely, right. Even though I was just fine, you just gets squirrely.
And someone once told me this-- and I think it was a great thing, and I think we'd do this hospitality-- is that there was a hospital, and they were trying to figure out, for the staff, how to raise the satisfaction level. And they found out that when a nurse or doctor said, can I help you-- and you're sitting there. Whether it's after surgery, or you're getting your chemotherapy, you always feel like people are busy and you don't want to bother them.
But if they said, do you need anything else? I have time. Totally changed the paradigm. And I thought that that was just a brilliant way to be able to just give someone permission to actually say something a little more about it.
For me, I have to say that when I did go and get my surgery-- and it was all immediate. I was diagnosed. I had to immediately get surgery get part of my colon removed-- not a lot, but enough. And that when I went there-- when the going gets tough, I bake. So I baked all these cookies before it went to the hospital. And I put them in little guest bags.
And everybody I met on the hospital staff, I gave them a bag of cookies. Why? Who are they going to be nicest to?
[INAUDIBLE] gave them cookies. But I did that as a-- again-- as a way of just being able to show appreciation. And when the anesthesiologist, after my surgery, wheeled out, and he said, so you know what you talked about when we wheeled you into the surgery? And those drugs, I mean, you-- they could ask you anything. And I think that it would just be truth what you would say.
And I said, no. And he said, you explained every cookie specifically so we knew exactly what was in that goodie bag.
And I thought, thank god. But it was an experience that-- for me, it gave me permission. It just gave me permission to make changes in my life.
I was very, very fortunate. I had great care. I had incredible care. And I was able to have that follow up.
So that human touch of those moments with the staff, they are amazing people. But it was quite a journey. So that's it.
BOB RITER: Thank you. So Patti, maybe let's go to you and just go down that way.
PATTI PAPAPIETRO: Sure. Thanks. I'm Patti Papapietro. This would be my thirtieth year at Cornell if I were able to work right now. Three years ago, pretty much to the day, I got a confirmed diagnosis of pancreas cancer.
And when you start to read about that, what you learn is that the treatments are horrible and that it will come back and die-- and you'll die anyway. That's sort of, if you're starting to read the literature, what you learn.
And I didn't expect to make it from that day to this day. I have had a lot of treatment. I started with chemo. Chemo was effective in shrinking my tumor so that it could be successfully removed.
So then I had some very fancy radiation. And then I had surgery, which is a surgery that surgeons will tell you is their holy grail. It's the Whipple surgery. And
They basically take you apart, cut out lots of your GI system, and put you back together. But it doesn't kill as many people now as it used to. Hardly anyone.
And the protocol is that after that, you get followed every few months. And so you go and see your doctor, and you get blood work, and you get a scan. And so I was in remission for awhile-- a little over a year. And then on a routine scan that my insurance company had pushed back against doing, there was something in my liver. And my tumor marker my blood work was elevated. And so then we had to figure out what to do next.
And so right now I've just have what I hope will be my last chemo for a little while. And I am very much hoping that a doctor-- some nice doctor at Johns Hopkins will come up with a more direct intervention in my liver because that's where my [INAUDIBLE] are.
I have then two to three major cancer centers and have had local care by Dr. [? Garbo, ?] who I'm terrified is going to retire before I'm finished with him, and worked with the chemo staff. And I honestly expect to work with those folks for the rest of my life. And I'm glad I have them, because they're pretty wonderful, as Barbara said. So that's my story.
JASON HUNGERFORD: I'm Jason Hungerford, and in 2010, two weeks after turning 33 years old, I was diagnosed with colorectal cancer, which is a pretty young age for that type of cancer. I have no family history of cancer. And I had some rectal bleeding and went in for a colonoscopy, and it was diagnosed two days later after they did a biopsy of the polyp that they found.
I had a portion of my colon and a portion of my rectum removed. And then I had radiation done here locally. And I had oral chemotherapy. So I took a pill.
And there was-- for a period of time, there was a question of whether I should do an infusion chemotherapy or oral chemotherapy. And I got a second opinion, and the doctor said that it would basically be about the same. So I opted for the oral chemo.
The treatment lasted for maybe six to eight months. And after that, I had routine colonoscopies, and I've been fine cancer-wise ever since then.
And I became a volunteer with the Cancer Resource Center. I facilitate two support groups there, and I currently serve on the board.
As regards to my interactions with the medical facilities, I'll just say when the plan initially was for me to get infusion, they do a tour of the infusion suite. And today, I'm ashamed to admit what I felt. But I really did not want to do the tour.
I did not want to see sick people. I did not want to see people looking like they're dying. And I wish that they perhaps hadn't pushed me to do that tour because I just didn't want to be around that. It was frightening.
The nurses and the tech staff and most of the doctors were great. And I think that the people is what helped make the experience a lot better.
DAVE LUBINSKY: Hi. I'm Dave Lubinsky. I'm a professor here. I'm a professor of nutrition, and I spent part of my course talking about cancer, and particularly ways of preventing cancer.
And so I'm well aware of many of the treatments out there-- both sound treatments and phony treatments out there. And I teach that in my course.
My father died of cancer-- so [? prostatic ?] cancer, specifically. And I-- being aware this, I started having tests for [? prostatic ?] cancer when I was 50. And starting about maybe eight months ago, my PSA count started going up-- started going up sufficiently rapidly that they wanted to take a biopsy.
And they took a biopsy, and they found that, indeed, there was cancer in my prostate. Does that mean all my nutritional advice is for naught? Well, my father got [? prostatic ?] cancer at the age of 60. I'm 75. So I think the nutritional advice probably was well worth it.
Fortunately, we're-- I think I was very fortunate-- when I was diagnosed with [? prostatic ?] cancer, my insurance company sent me to Sloan Kettering for further diagnosis and-- just a second opinion is all I wanted but, they diagnosed it. And that was the best thing that ever happened to me-- well, maybe the second best thing. I'll tell you what the best thing is a little later.
Because the facilities at Sloan Kettering and the people at Sloan Kettering were just absolutely marvelous. The physicians that I saw were in a quasi hospital doctor's office kind of facility, which didn't seem like a regular doctor's office. It was wide spaces, lots of light, lots of people going by.
The people from the elevator operator to the surgeons that I met were extremely amicable and easily approachable. For me, the most important thing was to answer questions because as a professor, you could imagine, I had lots of questions about what was happening.
So I can't say enough about both the facilities, which set you at ease, as well as the staff there-- the hospitality of the staff itself, the nurses, there's lots of physician's assistants, nurse practitioners. And it was run marvelously.
I said that was probably the second best thing. The first best thing that happened is I joined Bob's breakfast group because despite the fact that I knew an awful lot about cancer, and I knew I was going to get it one day, which eventually happened, it scared me shitless.
When I-- when he told me I had cancer, I just couldn't help reacting to it. I felt, god, I'm a leper. I belong to this weird group of people out there. And then when, after just a couple sessions meeting with all the friends of Bob's groups there, realizing, hey, we're people.
We didn't change. That we are all going through similar situations. None of us are bashful about explaining the treatments. And it's terribly reinforcing as support to have people around who have gone through similar experiences.
ROSEMARY LANG: My name is Rose. This is my husband Rob. I'm going to just briefly lay out the logistics and timeline. And then Rob's going to talk about his experience.
In June of '16-- 2016, similar to-- my story-- actually, my name is Rosemary Lang. I'm not related to Barbara Lang, but our stories actually have a lot of similarities. I had my first routine colonoscopy and was surprised and shocked to learn that I had stage IIIA rectal cancer.
I-- in August of '16, I started chemotherapy and radiation. Both of those were-- it was infusion chemotherapy here at Cayuga medical and radiation. That was a 5 and 1/2 week stint. The chemo was a 24/7 thing, but we would go to the chemo suite every week to have things changed out. The radiation was every day.
In-- things looked really good for a while, like perhaps I wouldn't need surgery. But it turned out I did. So in August of 2017, I had my rectum removed at Strong Memorial in Rochester.
And then in-- I had a temporary ostomy. And then in January-- on January 10th of this year, I had the ostomy reversed also at Strong Memorial.
ROB: I'm Rob [INAUDIBLE]. I'm on staff here at Cornell and a hotelier as well-- maybe a lapsed hotelier at this point. I'm in IT.
But I'm actually very interested in what I hope you folks are interested in-- is bringing more hospitality to the medical experience that people have. And from a caretaker standpoint, it's been a very long, fatiguing journey. And it's also very rewarding.
But anything that can be done that improves the experience of the family is, I think, really important. And I always-- we'd get into a nice space and think, oh. This is like the admiral's club. Or this is like check in at a Doubletree, and they give you a cookie. Just these little things that would change your experience.
Strong Memorial's fabulous-- the staff, et cetera. Some of the facilities really were very helpful. When you're waiting for-- through an eight and a half or nine hour surgery, having a space with excellent Wi-Fi where your can work.
I did, through the 18 months, a lot of remote work. And it allowed me to stay engaged. And also, there are many hours where you're not with your spouse. And you can actually accomplish a lot still for the university and with your coworkers and the projects you're on.
So having a space that lends itself to being comfortable, being homey, providing coffee and a quiet space to have a quick phone conference-- it all sounds a little strange, but that aspect of it allowed me to be there constantly through the 18 months-- take care of Rose and be engaged at work and functional.
And removing that stress and fatigue was a huge benefit. If I had been fighting for each of those things, I think it would have been a lot harder to be there for Rose, and be successful, and be engaged when I had to.
BOB RITER: Janet. [INAUDIBLE].
JANET: So I'm Janet. I have three cancers. The first two were easy-- endometrial and then bladder cancer twice. They were basically handled just by surgery. I thought, well, this isn't so bad. And then I started having symptoms that were not easily diagnosed because my breast cancer did not show up on mammograms, but eventually got a diagnosis of stage IV breast cancer.
So I've been in treatment for that since March of 2011. My experience was mostly outpatient. And I didn't react to much to what the environment was. There were people who were there to help me, and they were friendly and all that.
But it turned out, I was in this for the long haul-- but again, mostly as outpatient for the first five years of my treatment, which is very unusual for metastatic breast cancer. For the last two years, though, I've been in one chemotherapy after another. So I've seen a lot of infusion suites.
And back at the beginning, when I was on oral treatments, I volunteered in the infusion center in Fort Worth, where we were living at the time. So I got to see the importance of-- from the point of view of the volunteer position and from the point of view of the patient position.
As a patient, I really like windows. I really like a connection to the outdoors. The infusion suite in [? CHOA ?] has one room which is totally enclosed and windowless. And I would say, no, no. Please don't put me in a-- in jail. And I felt without this connection to the outdoors that it was much harder for me to sit there for a couple of hours.
In general, things are kind of crowded and can get a little noisy, though there's an attempt to keep things-- to keep this calm atmosphere. But, you know, I can remember one experience where-- when I first started Paclitaxel, I had a bad reaction to it. And suddenly, there was this army of nurses descending on me, that I'm sure was distressing to the people around me as much as it was to me.
There's this balance between privacy and companionability. Some people bring a couple relatives with them every time they come and chatter. And I generally come with my husband, who sits there and reads and runs off and gets tea for me.
When I volunteered in Fort Worth, we had a little cart that we took around. And I though people were sort of more willing to take something from a cart than to send somebody off to get something. So I think that probably was a benefit in terms of hospitality.
I do-- again, for some reason, for me, a window and a view of nature is important. So even though it's nice to have books stacking up your windowsills till you can't see out them, it's not necessarily the best idea.
The other thing that probably comes to mind for anybody who's ever been in the infusion center in Ithaca, is that if you don't get there early, you will have nowhere to hang your coat.
You know, it seems like a minor thing, but it makes the place look cluttered. So I guess what I'm looking for getting an infusion center and my experience in general is it needs to be calm. It needs to be comfortable. And it needs to relate to the outdoors.
And again, I'm with you. I'm in here for the duration, so if you make changes, I'll appreciate them greatly. Thank you.
DAVID: I'm David. I'm a caregiver. My major complaint of the infusion center is that I feel in the way. No matter where I am, somebody [? must be ?] asking me to please move. So it's a little difficult.
It's-- Janet's mentioned the time she had her nurses around her. I don't remember what I was because there were six or eight of them around her. I couldn't even see her.
As far as I know, she could have been dying. Cross my fingers. And there was just-- nobody said to me, it'll be all right.
It was just this-- hurry up and do things for, which I appreciated. Boy, was it nerve wracking. And that's not to take anything away from all the nurses there at [INAUDIBLE]. Beautiful. Just great people.
They're probably the best-- the only good thing about [? going to ?] the hospital? [? I'm ?] sure it's the only good thing.
But keep in mind that cancer patients tend to come to the same place day after day, week after week, month after month, year after year. It can get very tiresome.
If you go to a hospital for a broken arm, you can be there for a couple of hours, and then you're gone. You go for a cancer infusion, if you're lucky, you're only there four or five hours, and you'll be back. So I don't know.
I love-- I like the hospital. And as I say, I love the people. The building, not so much.
There have been times when I've dropped Janet off and then I've gone and tried to find a parking place, which I realize is not in your responsibility, but whew. It can be difficult
BOB RITER: Beth?
BETH: Hi, I'm Beth. And in 2009, at the age 35, I was diagnosed with uterine cancer. I was in Rochester at the time. I had ended up there for a variety of reasons I don't really need to get into.
But I had surgery. And when I woke up from that surgery, I was told I also had ovarian cancer. And I didn't know much about either of them at that point. But I knew ovarian cancer was really serious. And I started to cry.
And at the same time, I kind of realized I was-- well, this is after-- they didn't tell me this in the-- wherever you-- recovery room. They waited until I was actually in my hospital room. And I was in a double room with, my guess, an 80-something-year-old woman with a hearing problem who had the TV blaring. And the only thing I remember thinking is, where is Cheryl? I want Cheryl here. I want-- my partner is Cheryl.
However, when you're in a double, they don't let you-- they don't let anybody stay past visiting hours. And visiting hours were until either 8:00 or 9:00. My surgery had gone very, very long. So from what I remember, it was probably an hour or two after I woke up and was fully-- not fully functional, but that I have memories from, Cheryl had to leave. And I was still crying about the fact that I woke up and I had ovarian cancer.
The nurse's aide was wonderful. She actually found out-- you know, she saw this reaction and found out I was from out of town and actually managed to get me a single room. So in what you guys are working on, that was my very first experience with a facility other than just being in the traditional-- traditional room that you have your doctors appointments at.
And I should mention this is my first day I'd ever stayed in a hospital overnight. And I took notes because unfortunately, one of my side effects of my treatments has been memory loss. So I couldn't even remember all the information that I wanted to share. I'm not going to share all of it.
But one of the things Janet said is I also agree with is I want to have a view. One of my treatments was radiation, and I had internal radiation. So for those of you ladies, it's like getting your-- your legs are in stirrups. Guys, if you don't know what that means, ask somebody.
And between from the point that I had to get set up, have radiation, and then for them to take the internal radiation out was about 15 minutes I was lying on my back in that position. And I remember they have a huge-- looks like a stained glass window, but not that-- with lighting behind it. And it made it look like I was laying under a tree, and I remember really appreciating that. That happened in 2009, and I still remember that.
I had-- the ovarian cancer came back in the form of a cyst in 2013. But they said it was benign. In 2014, the cyst came back, and that's when they said it was the ovarian cancer again. But it's in a spot it's inoperable now.
My very first surgery was just under my sternum. They-- it's a nine-inch incision starting just under my sternum and down around my belly button. So if you can imagine, the recovery time for that was pretty long. But now, it's on my iliac fossa, and it's not operable.
So since 2015, I've been through a variety of infusions for chemo and also pill chemo and more radiation. And the radiation wasn't in the same location. But they had a very similar-- so I have to lay on my back, just flat on my back for the external radiation that I get now on my hip. And they have a similar thing on the ceiling that makes it look like I'm sitting-- I'm laying under something else. It wasn't a tree, but maybe it's just, like, sky and clouds and stuff.
Let me think. Even though I took notes, I still can't remember everything. I can't remember what these notes mean is essentially what it is.
Look up executive functioning. That's my issue. Because of some of this reasoning, I'm actually not working anymore. I've officially retired. Sounds great, but when you're 44, retired it's not so much fun.
But I don't have to worry about work things because stuff like this would be challenging if you were trying to work. But I would like to say the same thing about really the windows and having the outdoor environment. I go to-- there's another office for infusion up of off [? Hanshaw ?] road if you didn't know that.
And I like that location better. It's a little smaller, but it has fewer patients. I don't feel like it's as hectic as the main hospital. And the big thing about the main hospital-- well, the east office, almost all the seats have windows. And they know which chair is quote unquote "mine." if it's empty, they know exactly where I'm going to because it's the one you have a side window and a front window.
But the one thing I'll just say about this before I finish-- the main office is when you go to the main office, you don't go to the main hospital. You have to find your way north of it. You're outside for a while. You see the signs radiation oncology. But that's not for you.
You keep going into this medical office building. You go downstairs into what feels like a basement because then there's no natural light anywhere. And you go to the offices that way. And if you want to talk about feeling like excluded from the rest of the hospital, it really feels like that over there.
So-- and I know they're working on potentially moving it and doing something new, but it's exactly what Janet was saying too. It feels like it's very hectic in there. There's too many things going on at once, I feel.
And the main thing that I don't like about that hospital is it's a row of seats. And yeah, you're looking out a window, but everything is going on behind you. And that just bugs me. I don't like all these things going on behind me. I want to at least be able to turn my head a little bit and see what's going on.
So that's my opinion on facilities and such.
BOB RITER: Just one thing I want to reiterate is one-- I think every cancer patient remarks on the fact that you lose control. And anything that you can do in terms of design or programming that helps cancer patients maintain control is a good thing. Even simple stuff like choice of lunch makes a difference because you feel like all this stuff is happening to you. And we want to have some control.
BETH: Just to add on when you mentioned lunch is one of the great things also about the east office is they have a cafe, and you just order whatever you want. It's not a cart coming through, or a selection of a couple of sandwiches.
I've had burgers. I've had breakfast for lunch. You know, anything that they can put on a grill, they can make. And I just thought of the other thing I wanted to say when I looked at my notes, and I don't remember what it-- oh.
Janet mentioned the amount of time that you're in infusion. And, you know, they can vary. I've had now 48 infusions, and they've varied anywhere from five to about nine hours. So I have spent a lot of quality time in the infusion suite. And that's what you're going to find is the patients going through the same thing over and over again-- hopefully not 48 times, but--
DAVID: Hopefully more.
BETH: Well, no. Because then hopefully I don't need it anymore. That's my hope.
JANET: Ah. I just expect to keep needing it.
BETH: Well, I do too. Janet and I are in the same boat. We're going to keep needing it, but it happens a lot. That's all. Now I'm done.
SPEAKER 1: Thank you so. Let's start on this side of the room and move around this way to ask questions. [INAUDIBLE] here.
AUDIENCE: [INAUDIBLE] yes. Some of you are familiar faces. I was wondering during your treatment and recovery process, how important was-- how important was food to your recovery process? Professor Lubinsky, I've taken your nutrition class, and I loved it.
And I want to know, not just from a nutritional point of view, but you mentioned yourself having that cafeteria and being able to choose what you ate helped to reclaim part of your life. So can you think back to some of the food memories that you have regarding the experience, good or bad?
PATTI PAPAPIETRO: When you're having chemotherapy, it can be very difficult to stay hydrated. I have-- my chemo routine is three days-- one day in the chair, and then I bring home a little sort of baseball sized pressurized ball for a slow infusion over the next two days. And I'm really tired, so I sleep a lot and often don't feel that great. So it's hard to eat.
And those two things make it really hard to stay hydrated. And if you get dehydrated, it's a big problem. Then, you're a mess. And the other thing that has given me trouble over the past-- since July-- is my electrolytes.
And so food, and hydration, and ability to manage all of that is actually very challenging. And a lot of times, it's not even appealing to drink. So-- and I don't think my side effects are the worst at all. But those are challenges that are presented.
SPEAKER 1: [INAUDIBLE] move onto [INAUDIBLE] questions. You probably have [INAUDIBLE] answers for each question [INAUDIBLE], but [INAUDIBLE].
AUDIENCE: Good morning, everybody. My name is Sophie. I'm a hotelier. Thank you all for being here. I apologize that this is a difficult subject matter, but I was wondering if any of you could speak about your children's experience in this because I know when my mom was diagnosed-- and Barbara, luckily, was there for her. They've been friends for years.
It was a really tough experience for me in middle school going through this. And I know you guys must have kids and grandkids. And I just wonder what did the hospitals do or what did they not do to help your young family members going through this process?
SPEAKER 1: Go ahead.
JANET: I only had adult children at the time-- already in their thirties. And neither of them is married, so I have no grandchildren. So I can't speak too much to that.
I think what's important is communication. I always put my kids on the list of people that-- who can talk to doctors. But actually, they get most of their information just from me. And currently, they live in Texas and Oklahoma, so we-- they are not intimately involved.
I don't know-- do any of us have-- had young children at the time? To me, I've had friends who had young children. And that was much, much more challenging.
You know, at what age do you tell them? How do you inform the child's school? But, you know, as I said, it was not a big problem for us.
Yeah. That's true. I did have a good friend who died of breast cancer whose children were teenagers at the time. And they found it challenging to deal with. But she kept them informed, and I think that communication is really important to this.
I think almost probably whatever age the child is, there is going to be a way to communicate to them. You may need to involve counselors. I was down at Sloan Kettering on Wednesday. I got a call yesterday from the counselor because I had expressed an interest in how to talk to my husband about issues involving cancer and cancer survival.
So I think that keeping-- most hospitals have social workers that will work with you and will give you references to people. But I think keeping communications open and involving professionals in helping you do that is about all I can offer.
BARBARA LANG: Can I have one quick-- just real quick-- that if someone in your family actually gets-- the parent gets diagnosed with cancer, and they're not immediately up front with you, it's because that's the way that they need to deal with it at the time. It is sort of like-- it's about you, and that if the person just isn't ready. On the other hand, if you wait too long, then I think children can feel like they've been betrayed because they've not been informed.
But I know that I waited a bit until--
JANET: [INAUDIBLE] that this business of not being told, particularly with older--
BARBARA LANG: Correct.
BARBARA LANG: I'm just saying the timing is that I didn't immediately call my children to let them know that day that I had been diagnosed with cancer. I needed to kind of navigate what it was that I was going through before I went ahead and I reached out.
SPEAKER 1: [INAUDIBLE]
AUDIENCE: Good morning. My name is [INAUDIBLE] [? administration. ?] I actually worked in Memorial Sloan for two years prior to going back to graduate school.
My question [INAUDIBLE] to do with-- when you were at these [INAUDIBLE] facilities, were there any services that [INAUDIBLE] really brought down that stress level for you [INAUDIBLE]? Something that you just didn't [INAUDIBLE]
SPEAKER 1: [INAUDIBLE]
ROB: At Strong Memorial, the family waiting room while your loved one is in surgery is-- was a lovely surprise. And it was well-administered. They had snacks and coffee. They had chairs, couches, tables, you know, tall [? two ?] [? tops. ?]
It was very much like a well-provisioned-- you know, like the admiral's club in the airport. And it provided-- when you're there for 8 and 1/2, 10 hours, it creates a space where you can relax, nap, work, communicate with your family members who are worried.
It was a welcome surprise. And the second time there, it was a comfort knowing that I would be there. And I would say that's a key thing to try to help create and build in these spaces that may not exist. And I always think about the expense of it for a facility. It's not a revenue center. But it made a huge difference for me and for Rose's sister.
SPEAKER 1: Thank you for that. Beth?
BETH: Yeah. So when I was up at Highland Hospital in Rochester, they actually have a floor specifically-- or a wing of a floor specifically for women who are going through gynecological cancer. And since I was there, I understand that all the rooms are now single, which is nice because then, the insurance company can't say, well, you have to pay extra. When there's only singles available, they have to pay for that.
Another thing is they have a large area for family and patients to visit. And it's not like tucked away at the end of the hallway. It's in the middle of the hallway, like, kind of [? eqidistant ?] from all of the patient rooms. So comfortable chairs, couches, computer-- and well, this was also nine-- 10 years ago before everybody had their own smartphone. But there was a computer there, books, games.
If you had somebody staying with you and you were in a single, they would actually bring either a really nice comfortable chair that would open up into a bed and the sheets and the pillows and everything you needed, or if your-- was the right room, you could also get a cot.
They have a kitchen specifically just for the patients where we could store own food. And for meals, we actually chose off a menu. It wasn't just this entree, and, you know, these two entrees are available, and, you know, you're going to get pudding with it. It was a full menu, like you-- well, for me, I was on a new type of restricted diet. So it was essentially the food that was available to staff and visitors down in the cafeteria.
And people with me for a flat fee could also order off that menu, and they would deliver it at the same time. So we would be able to eat together.
ROSEMARY LANG: As a counterpoint, most of my surgical experience recovery was in a single room, which I appreciated. But probably about a quarter of it wasn't. And I mentioned I had rectal cancer. I had my rectum removed. When that happens, you have no control over your bowels for awhile.
So I was in a shared room, and the bathroom was on the other side-- in the other-- and even though it's the bathroom available to everyone in the room-- you know, I had equal access to it, I always felt very anxious about going to use it, despite the fact that I desperately needed to use it a lot. It always felt like an intrusion into the other person's space.
So again, understanding, like, there's a cost involved with creating hospitals with private rooms. But especially if you're someone who needs to use the restroom on a regular basis, having only one and having it kind of-- feels somewhat like an intrusion or inaccessible was-- it kind of raised my anxiety level versus reducing it.
SPEAKER 1: Other questions? [INAUDIBLE]
AUDIENCE: [INAUDIBLE] My name is Andrew, and I actually lost my dad to [? bone marrow ?] cancer at the age of 15. During that time-- and I'm sure from a patient and from a family member standpoint, you feel very isolated. You feel like you're the only one experiencing this symptom or you're the only one experiencing this experience.
And so-- I mean, we talked about some of these group rooms. And we talked about kind of the public areas. A lot of times, when I was in those rooms, it felt very isolated.
Each family kind of had their own corner, and there wasn't a lot of collaboration. So is that something that-- this was back in 2004 that this was happening to me. Has that shifted, or is there a need to shift so [INAUDIBLE] as the patient to patient can communicate so that you don't have to feel as isolated or that [? seems ?] [? sort of ?] [INAUDIBLE].
Is that something that's shifted, or is that something that you can see the need to have more collaboration between people going through the experience?
JANET: Well, I think a lot of my [? information-- ?] my experience was with either groups organized by the hospital for patients-- and as a breast cancer patient, there's a lot of this-- or here in Ithaca, the Cancer Resource Center has groups, which I think are-- for most of us-- are really important for our-- even if we're not certainly going to be recovering, they're part of our recovery to understand what's going on with us and with other people in similar experiences.
My hospitals in Fort Worth we're more organized around activities for patients than [INAUDIBLE] [? CHOA ?] appears to be. But the Cancer Resource Center picks up a lot of that slack. And I don't know-- and has some groups for caregivers and for both caregiver and patient.
I don't know whether this can be addressed as well right at the beginning. While you're first going through the process, you have so much to consider that it's hard to add one more thing to it. But there really do need to be groups available to patients. And even if it isn't in the hospital, the hospital needs to make it clear where you find this support.
SPEAKER 1: And sorry, we have run over time. And I would like to thank our panel. We really appreciate you spending the [INAUDIBLE]
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Bob Riter, former executive director of the Cancer Resource Center of the Fingerlakes, moderates a Health, Hospitality and Design Industry Seminar, "Cancer and Cancer Care: The Patient's Perspective," March 23, 2018. Offered by the Cornell Institute for Healthy Futures, the seminar course (HADM/DEA 3033/6055) provides a unique opportunity for students to learn from industry leaders with proven success in the emerging industry that combines elements of hospitality and design with health, wellness, and senior living.