The 32-Hour Day of Caregivers (2024)

Julie Clauer 0:00
Thank you for joining us today. We’re very excited to have a conversation all about caregivers. Caregivers mean so much to us, and Stacey is going to talk a little bit more about that. Having a conversation where we’re solely focused on the caregiver, it’s really important to us, and glad you all can be here to participate in that conversation. We’re hoping everyone who’s on here is either a caregiver themselves or somebody who’s interested in how to support caregivers and understand caregiving a little bit better. So that is why we created this session, and what we’re going to do is we’re going to share results from a survey that we did for caregivers, and then we also have some some caregiver voices, of people that are going to share different different parts of the caregiving experience to help us understand it a little more than just what the data is showing us. And then we’ll have a conversation, and can answer questions about either the survey or the caregiving experience or anything, as long as it’s related to caregivers – we’re good, because that is what this session is about. So by way of introduction, my name is Julie Clauer. I’m the Education Lead for PALTOWN, which is the organization behind COLONTOWN. I worked on the survey with Stacey and Laura. If you two can introduce yourselves?

Stacey Runfola 1:43
For sure. Thanks, Julie. I am Stacey Runfola and I am what we call, the Mayor of COLONTOWN. So that basically means I am a program manager. I keep the community of COLONTOWN running on a day-to-day basis. I actually came into COLONTOWN myself as a caregiver in 2011. My husband passed in 2014 and I have been volunteering ever since, and now I actually work with COLONTOWN and PALTOWN, and I’ll pass it to Laura.

Laura Videtti 2:14
Hi. My name is Laura Videtti, and I’m the Community Leader for our caregiver groups in COLONTOWN. I became involved with COLONTOWN back in 2018 when my husband was going through stage IV colon cancer. Unfortunately, he passed December 6, 2019, so I’m coming up on the five year anniversary. Shortly after that, I became involved in hosting in our caregiver groups, and I’ve been here for a little bit over four years now.

Julie Clauer 2:56
And such a gem, such a gift to us all. Thank you, Laura, and then we’d like our caregiver speakers to introduce themselves. So Steve, if you could just quickly introduce how you got here.

Steve Lancaster 3:10
Yeah, sure. Hey everyone. My name is Steve Lancaster. I am a caregiver for my husband, who was diagnosed in January of last year.

Julie Clauer 3:21
Thank you, Heather.

Heather Wallace 3:25
Hey everyone. I’m Heather Wallace. My husband was diagnosed five years ago this week, at the age of 32, and we have two small kids.

Julie Clauer 3:41
Thank you. Ru…

Ru Chee 3:44
Hi everyone. I’m Ru, I’m here to support my husband. He was diagnosed with stage IV cancer in January of this year. We were just engaged, then we got married, and I’ve been with him on this journey since.

Julie Clauer 4:00
Thank you and Adrian.

Adrian Griffin 4:04
Hello everyone. My name is Adrian Griffin, and I’m here in COLONTOWN in support of my wife who was diagnosed with colorectal cancer April of this year.

Julie Clauer 4:16
Thank you, Adrian. So you’ll be hearing more from each of these folks later in the conversation, and I’m going to first turn it over to Stacey, who’s going to talk a little bit about COLONTOWN and caregivers.

Stacey Runfola 4:30
Thanks again, Julie. So I wanted to talk a little bit about what COLONTOWN is. Some of you who are watching are COLONTOWN members, so you know very well who we are and what we do. But some of you have joined us from outside of COLONTOWN. We are a colorectal cancer support and education community, and what’s really important is that all of our support is peer to peer. It’s all patients and caregivers talking to each other, and all of our education is evidence based and science backed education and it is very clearly stated that it is for patients and caregivers. So our caregivers are about half of our membership, which is pretty amazing, and what is also amazing is we’re treated as equals. We’re treated as important, and we’re treated with respect, and when it comes to researching symptoms and looking for trials and talking about how to talk to our doctors and how to search out second opinions, we get to learn right alongside the patients. So we’re never made to feel like we’re second class citizens. And I have been here since 2011 as I mentioned before, and that’s always been one of our guiding things is that, you know, our caregivers really do so much for the patients, and so it’s important that they have access to everything that they need. And then even, as you can tell, in our staff. So I now work for COLONTOWN, I come from the caregiver side. Our brand new executive director is a caregiver for a patient, and came up through COLONTOWN, and then we have these really dedicated resources. So in COLONTOWN, it is important that we all have this equal access to information, but we also recognize that there are separate needs since patients and caregivers really have their own unique needs. Something that we do is, besides all of the places that we have for everybody to learn together, we also have these places where caregivers can be with caregivers, and patients can be with patients, and they can talk about what they need to, in that private, secure setting. And that’s something that’s also very important to us. So some of those caregiving groups, we take it so seriously that we recognize, because what we do is all made by caregivers. The caregiver communities have been built by caregivers. We understand those little nuances, so we have a bunch of different groups that are available for caregivers. We have our CAREPARTNER CORNER, which is for any stage of disease, but it is for primary caregivers, and that is typically a spouse or a partner, but not always. Sometimes it is the adult child of a patient. Sometimes it’s a sibling of a patient, but typically we define that as somebody who is really in charge of being with the patient when they’re making decisions, taking care of the day to day. It could be medication management, it could be side effect management, it could be who the patient really turns to when they’re having a problem, and again, that kind of decision making piece being a part of that. We have FAMILY CIRCLE, which is for secondary caregivers. So we always have people who want to be involved and want to help, but they don’t really belong in that primary caregiver group because they’re not living the day to day of it so we need to make sure that our primary caregivers have their own space. You can see, I don’t necessarily have to read every one of these to you, but we have a PARENT’S PORCH. It’s for parents of adult colorectal cancer patients. Again, that might be someone who their child has a spouse, and that’s the primary caregiver, but there’s really huge concerns for those parents whose kids are going through this, your kids are always your kids, no matter what age, and we actually take our caregivers all the way through grief and loss. So both Laura, who you met, and myself, are part of that group. We’re in the BEYOND THE THRESHOLD group, and we take care of our caregivers even once they’ve lost their people. And then sadly, we also have groups called COLONTOWN JUNIOR, and COLONTOWN JUNIOR is a subset of our caregiver neighborhoods, and that is based all around pediatric patients. This is the caregivers, typically the parent or parental figures for pediatric colorectal cancer patients, which is, sadly, a growing a growing number of people are getting this disease younger and younger, so that is why we offer that support as well. And I want to transition a little bit to our survey. So if you see behind me in my background, it’s actually a real, not a fake background. It’s fabric. This is the poster that we presented, and I happen to have it in my house here, so we thought it’d be nice to look at. Obviously, you can’t read it from here, but it is a wonderful poster, and thank you to Julie for putting in a lot of extra work on this and presenting it. So I’m going to talk a little bit just about the survey methods that we use. So we have these great caregiver communities, and when we decided to do this survey, we went and put it into our neighborhoods, in our private community, and it was really amazing. We put this 33 question anonymous survey out there, and the members of the COLONTOWN community just came out in spades. So many people came out. It was really impressive, and really spoke to how needed this was. This was in May of 2024 and it was just this self reported data. We did not weight this data in any way for demographics. Also, we didn’t take into account and we know this that our caregivers, probably, as we’ve seen, are more educated and more involved than maybe the typical is because they’re seeking out this type of support and information. The same is true of patients, they’re typically extremely empowered, and when they go into their appointments, they already know what they’re talking about. But what we did is we had some basic overall topics here. So caregiving responsibilities, the effects of cancer on their other responsibilities and other activities, the impacts that cancer have on the caregiver, and then also the support that the caregiver felt that they received and the support that they felt they needed. We had an amazing response. So 359 respondents from 17 countries, which was really awesome. 88% were female, which is really indicative, because we do have a big female leaning in our COLONTOWN caregivers, 86% were significant other or spouses. 90% were stage four, which also tracks for us, as I know from the caregivers who are here today, three of our four panelists have stage four, and then if you include Laura and myself in that mix, it really tracks right around that save 90%, and also 85% were in the US. And I’m going to turn it over to Julie, who will tell you more about what we learned from the amazing caregivers who took the time to do our survey.

Julie Clauer 11:13
Thanks, Stacey. So yes, we’re going to go and get into the data. And you know, there’s lots of different ways we looked at and cut the data. So I’m gonna take you through the basics across the board. If there’s questions at the end in terms of potentially nuances or specific pieces, I might be able to have that data to share either on this call or can follow up after, if it’s not in the 50,000 page Excel spreadsheet workbook that I have already. The four key areas of where we learned, this is a little bit of nomenclature for everybody, in that we split activities out into three different territories. So one was around treatment related activities, and what we learned is the extensive role that caregivers are providing in treatment related activities. We’ll talk about that first, then we’ll go into non-caregiving responsibilities. So these are response things that we considered “responsibilities” because it was our definition of things that are more responsibilities, that don’t have to do with cancer or caregiving, specifically, of their patient. And then those also went up. So those two together give you a story behind the 32 hours of the caregiver day because not surprisingly, if you add up all the things people are doing, it’s much more beyond what any person can handle in a day. And we have a lot of multitasking going on. I think Heather has maybe dialed in from, I think the soccer field for her son. We had one of our panelists that was almost in the hospital calling in from the from the cafeteria, because her patient was there today. So lots of double time activities to try and get all these activities into a day. Then there’s a decrease in the non-caregiving activities. And we separated activities as things that were a little less required kinds of activities. So you’ll see what those are about. And then the last piece is that it really is a life changing experience with the need for more support. We will talk a little bit about what we heard from caregivers in that regard. So the first thing we want to share is the poster, which is behind Stacey. We won’t make you try and read that poster, and I’m not even going to try and make you read this poster, but it is about that first topic. So I’m going to go through that, and then I’m going to go the three other topics that we did not include in our ASCO Quality Care Symposium poster. The ASCO Quality Care Symposium was last month in San Francisco, and it’s really around topics related to quality of care. Being able to represent caregivers there was really, powerful and important, because that’s where caregivers play a significant role. So in terms of significant involvement in care, here were the caregiving, care-related cancer activities that we asked about. And just to orient everybody, the red means that the caregiver really has complete responsibility for that, for that activity. The orange is that they take the lead. The gray is that it’s really shared. And then on the right is where the patient really is primary. And so caregivers shared with us that on a lot of these activities, they really are providing more of a primary role, so either the red or the orange. So when you look at those, a lot of them or over 50% of the time, the caregiver is really taking the lead on making those things happen, even though they’re a part of the patient’s care, and even in the gray, that means that they’re shared responsibly, so very low in terms of where the patient really is taking the primary lead in a lot of these activities. Now, Stacey talked to the fact that our caregivers probably are a little biased in that, but it is consistent with what we’ve seen in other studies, more broadly in the caregiving space, that this does track with that. I was surprised about how significant a role caregivers played in a few of these, and we’ll talk a little bit about a couple of them in a second. So in terms of time spent on these care activities we asked, overall, if you look at all those activities, how much time on average did you spend weekly on these activities? So it’s self-reported, but over half of the of the respondents said they spend more than 15 hours a week and when you think of a week, that is a lot of time to be spending on these activities, especially when you think about all the other responsibilities that people have. Now as patients, of course as a patient, I can say this, we also spend a lot of times on these activities, but often other activities outside are actually reduced. So either you’re on disability or there’s other responsibilities that people take away. And we heard that a lot from the caregivers, where it was, “it’s understandable that my patient can’t do these things, but who then will do them?”. And so we had a lot of qualitative comments in that regard. Even though patients are also spending a lot of time on these activities, there is a little bit more, I think, of an acceptance of that, versus with caregivers: the fact that they’re spending time on these activities, and it’s so significant in their weekly life. So when you look at the activities that they’re spending really, that they’re really driving, when you look at the two top ones which have over two thirds of the caregiver, really, driving the agenda and really being primary in those, they’re in terms of addressing symptom management, symptoms and side effects, and then in researching treatment options. And when you look at those two, it really is amazing. (Reading the comments in the chat box: Yes, wow. Nancy, thank you for your comment.) Yes, it really is amazing that researching treatment options is so significant, and even in addressing symptoms and side effects. What we know, that obviously caregivers play a big role in this, but the fact that they’re driving it was pretty surprising for us, and I think really surprising for health care providers, partly because we know that from healthcare providers that the caregiver will be in the room, and we see a little bit later about what their role is in that room. But – they don’t necessarily know all the background that the caregivers have done to prepare that patient for that conversation even if the caregiver isn’t taking an active role at the appointment. We also learned from the qualitative responses that caregivers sometimes do this because a their patient isn’t feeling up to it physically, but also mentally. For a lot of patients, the ability to have somebody else think about these things is very impactful and helpful for the patient, it adds to – and then what – caregiver is doing. In terms of the direct interaction with healthcare providers, it amazing to me that our caregiver respondents, 88% of the time, they’re either usually or always, either in the appointments or communicating directly with the healthcare provider. That is quite significant in terms of the role that caregivers are playing directly with the healthcare provider. Yet they’re not necessarily always treated, or feel like they’re treated with respect or supported. If you look at the support, over 50% said that they were the bottom two box in terms of ‘not at all’, or are close to that in terms of not feeling supported by the health care provider. One of the questions you may say is, but is that their job? Is that the health care providers job to do that because they have to obviously treat the disease. Now they’re being told, ‘No, treat the whole patient.’ Now it’s like, okay, ~and also support, their people. But when you think about the earlier data that showed how critical of a role that caregivers are providing in these treatment related activities, making sure that they’re feeling supported in, and respected in that, is extremely critical. They really are a critical member of the team, and not necessarily an extension of the patient. They really play their own role in that. The other thing that we heard qualitatively a few times was that really the palliative team was the doctor that they actually felt the most supported by, which actually makes sense, because that is kind of more so in their remit as a palliative care provider. But the question then begs, why then is it not in the remit for all, if it’s that critical to the to the treatment of the patient? So throughout the presentation, I have quotes that share some of the insights. These are specifically directly from the survey that support what we just talked about. I think this one in particular, “We need a nursing degree, a social work degree, and perhaps a research background.” And this is all just related to the care of their patient. So with that, I want to turn it over to Heather, who’s going to share a little bit more about this in her experience.

Heather Wallace 21:34
Yeah, okay, so advocating for my husband has been the most important thing in this journey, honestly. Being diagnosed at 32 we went through probably nine months of doctor’s appointments telling them that something was wrong, for them to tell us that he was too young for colon cancer. – It was probably something else. – Here’s some medicine. – Change your diet before we finally got a scope done. And we had no idea at that point how important it was to advocate for yourself. You trust the doctors. Not all doctors are bad by any means, but you know the most about your situation and your patient, and it really falls on you to advocate and find the best care for your situation. For example, the first doctor that we got referred to, instead of the doctor being the best for our case, it was just whoever could get us in the fastest. And we went along with it until at our very first few appointments, we started asking questions that with very little research, they didn’t have any answers for. They weren’t available on some of the very early complications, and so we immediately started researching. At that point, we knew that advocating was going to have to be a huge part of this journey, and there’s been no looking back from there. We moved our care we live in we lived in Oklahoma. We moved our care to Dallas because nowhere was too far for the best care. We researched who would be the best for his specific situation, and even when we were happy with the care, we still researched further and got consults for clinical trials looking ahead to see what the next step might be, ‘having your planes lined up on the runway’, as some say, you have to look ahead and see what might be next, because when you’re hit with a recurrence, or you first get told about a diagnosis, you’re in no state to research and start finding new doctors and new trials, and it’s just not a good place to be. Furthermore, my biggest case for advocacy would be even being happy with care. He was diagnosed stage III. CEA quickly went to stage IV, and even though we loved our doctor, we loved the hospital system and again referred to somebody in that hospital, I was like, hang on, we want to look and see who’s the best. For this case, we want the best outcome, because oftentimes, doctors only know what is in their system or what their system does, and they have hundreds or thousands of patients, and they don’t have time. They don’t have the time that we do to look for your specific mutations, your specific scenario, so it falls on you. And we ended up actually with Dr. Fong. I’m sure many of you have heard his name before, and he told us the same thing. He was like, “a lot of doctors will stop learning. They get comfortable, and you have to be your own best advocate. You have to look and research.” My husband kind of laughed. He was diagnosed in 2019, so COVID was in full force by the time we were going into liver surgery. Most of our conversations were over the phone, but Dr. Fong wouldn’t talk to my husband without me present, because I had been the one lining up all of his appointments and emailing back and forth with Dr. Fong, so he insisted that I be on the call every time. But this proved to be our best case. When advocating, we ended up seeing Dr. Fong. He removed four liver lesions, and then a year later, one came back, and we got opinions from, again, from clinical trials, from a major NCI hospital, and we’re told by the oncologist that nobody would touch it and touch him again, they would be crazy to operate on him again. We got told by our local hospital that the goal was to kick the can down the road a little more, not cure anymore at this point, because he had another reoccurrence. And mind you, this was one tumor in his liver. He was knocked down. I was not willing to accept it. We left that major hospital with him saying that he would never go back, and me saying “we’re not.” That’s not the answer we’re stopping with. So we contacted Dr. Fong, and he was like, “No, absolutely, I will take it out. No, we’re still going for cure,” and he has been in an intricate part in our care. He also, like I said, he respects the caregiver. He encourages you. He, and a couple of the other greatest doctors that we have met encourage you to get second opinions. Go, by all means, go talk to as many as you want to and make the best decision that you can make. But advocating is invaluable to your patient, to your your entire family. It never ends. I am sitting at basketball practice for my son, who has had some major issues with…this is scary…he was five when we started, he’s 10 now. Anytime he has a stomach ache, he’s scared to death. So again, advocating with pediatricians and pediatric GI doctors, and it just never ends. The caregiver is probably the most valuable tool you could have.

Julie Clauer 28:22
Amazing. Thank you, Heather, so appreciate all your words. You definitely summed up a lot of the key points that we saw in the research. Thank you very much for that. And I’m sorry for saying that you were at a soccer game and not basketball. I know that can be very different. Okay, so thank you. And now we’re going to move on to this other responsibility. So now, outside of the actual care and treatment, there’s a lot going on for caregivers as well. We’re going to start with income. We asked questions specifically about household income and before cancer, “BC” and after diagnosis, “AD”. So you’ll see “AD” throughout the rest of the presentation, which means: after diagnosis. What we saw is that the blue is the the caregiver was the primary bread winner, if you will, for the family or for the unit, before, –I mean, and then pink was a shared responsibility. In orange, the patient was primary. And this is specifically for people where this was applicable, because somewhere in the same household is their patient. So they’re not included in this data. And what you see is that a lot of caregivers were very much part of and contributing a significant part of the household before cancer. But it shifts dramatically after, where that pressure becomes higher, where they become the primary breadwinner. And then also the whole pie goes up. So even if they weren’t necessarily as involved, they become more involved after, so that creates, obviously, a lot of different things. One is the change in time, though, for those people. So for the caregivers who are either primary or have shared responsibility, over half of them actually spent less time on work, so there’s more pressure to be the breadwinner for the family, while they’re spending less time on work because of all the other pressures that are going on. That’s a very significant squeeze. And what we see is, not only is it obviously the income from their work that’s important, it’s also the benefits. And so we saw that come up multiple times, that then becoming the primary bread winner also brings on a lot of other responsibilities beyond just the financial aspect. I’d like to turn it over to Steve who can talk a little bit more about this part of the experience for him.

Steve Lancaster 31:16
Thank you so much, Julie. Yeah, so I am a managing director at the largest professional services firm in the world. There’s a lot of responsibility and expectations for that job within my firm. It is a highly demanding, high performance culture of my firm, and I was leading two national practices and delivering 20 to $25 million worth of projects for my clients a year. On average, I was traveling 400,000 miles a year before the diagnosis, and before COVID. There’s a lot of high expectations, and then after my husband’s diagnosis, and fortunately because of my job, he didn’t need to work, which was great. He was able to to contribute and to keep our house running, which is a hard job, and to take care of everything that we have around the house, which is a really hard job, especially when I was traveling and not here, but after that, as soon as the diagnosis happened, I took a lot of PTO, and then I ended up leaning in to take a leave of absence at one point in time. That leave of absence was triggered around his treatments, and I still had this continuous pressure to perform, because if I lose my job, he loses his benefits, and at the end of the day, that’s all on my shoulders. So I always have this fear of, ‘Am I doing enough at work? Am I doing enough to take care of him?’. I don’t want him to feel like a second class citizen or like he comes second in any of this, and I’ve ended up trying to find some balance. Fortunately, I’ve had a great deal of support from my partners at the firm who I work with, but it is a high performance culture. And, because I’ve been on the inside, because I’ve been part of the leadership team, I know that the firm is very good about certain things, but I also know that the well of kindness, it only extends as far as running the business. I am always feeling this constant pressure of performing, and if something goes wrong, I’ve got anxiety about that. Am I gonna get fired? What’s going to be the downturn result? And I know I’m probably not going to get fired, but there’s this negative thinking that is constantly going on. The stress is insurmountable. It really, truly is. At times it feels like it’s a crushing amount of stress. But as crushing as that is, what my husband is going through is 1,000% worse and I try to remember that. When he was going through FOLFOX, and he was dealing with 12 rounds of FOLFOX, and then when he went on his clinical trial and got that terrible Cetuximab rash that went along with the G12C inhibitor that he was on, and when he continued to get growth in his spinal mets, and he got a spinal compression fracture. And I’m still delivering work through all of this and all I really want to do is just say, “Not important. You’re important.” Right? But you can’t and you feel guilty. You feel guilty to the people that you’re working for and with. You feel guilty for the patient that needs your support, and you feel like you’re not doing enough. And it just becomes a really, very, very difficult challenge. So ultimately, at the end, I ended up stepping away from my leadership roles at the firm, and ended up focusing on doing some some work inside the firm to help transform the way that we’re delivering our business. I ended up taking an eight week leave of absence, a continuous leave of absence when my husband was going through chemotherapy and radiation consistently because of his bone mets, and then I’ve just, literally just gone back, and we’re at the end of the year, and it’s performance management time, and all I can think about is, man, my metrics are crap. I hope I don’t get fired. So it never, never ends. The anxiety is enormous. The pressure is enormous. But again, what he’s going through is not even like what I’m dealing with. It is not even close to what he’s dealing with physically. And so I just try to keep that perspective in mind.

Julie Clauer 36:14
Oh, thank you, very hard to keep that perspective with so much pressure. But thank you, Steve, that was fantastic. And again, explains so much of what we learned in just so so much more powerful way, so thank you.

Julie Clauer 36:29
Okay, then in terms of other responsibilities beyond work, if you look at the other, again, we call these responsibilities versus activities, household chores, errands – everything really dramatically goes up. In particular those, so the pressure is just unreal in terms of how much more caregivers are taking on. And it doesn’t necessarily mean that their patient isn’t taking it on. It just it’s just that that multiplies as well. Trying to figure out how to balance all these things is really stressful for all. Next is the change in responsibility on those activities, spending significantly more time on on these responsibilities. Then we looked at activities, quality of life related activities. So these are things that weren’t necessarily like the responsibilities, but things that fill your life with a little bit more discretionary activities. The question is, are they really discretionary? Are they critical? But net is: all these significantly dropped. Social activities and other relationships, hobbies and interests, self care, sleep, partner intimacy and sex, all of them went dramatically down. Which pretty much across the board, significantly decreased time spent on these activities. One thing that was interesting in the data both in the comments and then also you’ll see a little later, is self care. The idea of self care, it turns out, it’s a very loaded description, and what people describe as self care varies, and what that means to people varies, but it’s interesting. Where self care seems to, in the language we got, sound more selfish than potentially it is. Somebody commented about how they don’t do any self care, but because what they really enjoy is spending time with their loved ones. So whether it’s in the hospital or not, that’s really meaningful to them, and to me, that is self care in a way. If that’s what a priority is for somebody, that can be self care. How you do it could be part of that. I raise that because I think exploring that idea of how to frame things that are actually for the caregivers wellbeing, in a way that isn’t triggering, that allows it to be part of them taking care of themselves. It is something that I think we should explore further and significantly less on these on these activities, not surprisingly. So here are some of the quotes, in their own words, that came out of the survey. Really, their whole lives really transitioned to being about the patient and what the patient is going through. There was a lot of appreciation and understanding of that. So it wasn’t like, “I get that this is what it is”. It’s just the reality of how it’s impacting me is significant. And so I would love Ru to talk a little bit about this aspect.

Ru Chee 40:03
Hi, yeah. So, you know, the loss of identity has actually been a very big part of my personal journey through this, especially since my husband’s cancer is fairly aggressive, and I think we are moving through the phases of what other caregivers go through at a much increased speed than you would typically see. The loss of identity has been really strong. I’m not saying that your identity doesn’t change, because this is a big incident in anyone’s life, and I’d be surprised that your identity doesn’t change at all to some degree, but it’s pervasive and it’s insidious. It’s kind of like nobody really starts off being like, ‘I’m going to go full tilt and I’m going to give up everything’, but you give up one thing and the next thing, and the next thing. I remember for myself, the first thing to go was my weekly yoga class. It’s a series of infinite, similar kind of decisions: do you go to chemo, or do you go to a yoga class? Do you take him to a doctor’s appointment? Or do you get a massage? Do you do some time researching treatments? Or, do you go to the gym? Things like that. And just infinitely, with every single one of these decisions on end, you are going to decide in favor of your patient, because that is the balance of things at that point in time. Over time, it adds up and before you know it, honestly speaking, you just cut deeper and deeper and deeper to accommodate your patient, accommodate your work. I resonate very, very hard with what Steve said about feeling like you’re doing a terrible job at work in a high performance culture and all those kinds of things. To some point also, when you take on all this mental note, sometimes even seeking to find ways to fit self care into the day can feel like it’s of a burden. I used to be a big gym goer, and I went four times a week, five times a week and things like that. I stopped going because it was just too hard to just muscle it into the system, and I started dreading my time at the gym instead of welcoming it. So that’s also one part of the lost of identity that we can talk about. It all kind of feeds into each other. That for yourself, it’s not even about scheduling. There’s also all the tiny little things of your day where you’re trying to figure out what exactly your patient will eat this this week, when he’s having his nausea and his chemo side effects, and you try 15 different things, and he eats none of them, so you just eat them. In my case, the funniest story ever had is in our treating institution there’s a coffee machine in the chemo waiting area, and he now associates the smell of coffee with chemotherapy. So me having coffee at home actually triggers anticipatory nausea. So it’s literally these 1000s of tiny cuts of things, and it just, chips away at yourself, your personhood, your identity, your existence, separate from your work, which is necessary to provide benefits and your caregiving activities. And it’s really, really, really hard to put a stop to it, because people will tell you to make sure you cover time for self care, make sure you do all these things. It’s every single decision. At some point you do have to draw a line, but it’s really hard to draw that line. All of this feeds into one bigger thing which is, how would they tell you, if you thought you want to be interesting to people, you want to be liked by other people, you want to engage with society. You have to read the newspaper, you have to do interesting things, you have to get out there when your whole life is work and caregiving, then you give up all these other things, and it changes the way people see you. I used to be Ru: the person who volunteers for dog rescue, and goes to the gym, and does this, and has this subject matter expertise in my firm, and about six months into our cancer journey, I overheard a conversation. There was no malice in this discussion. I overheard two colleagues who I don’t know very well, one of them mentioned my name. I don’t know in what context, but the other person said, “Oh, doesn’t her husband have cancer?”. That really just feeds into the way that the world sees you, just because you have so much less of these other things and that also contributes to loss of identity. This caregiving identity taking over your life. So I think, to keep it short, is, as a caregiver, you can actually feel very invisible in yourself, outside of the context of everything you do for your partner and for this journey. I’m still struggling myself, with trying to understand, what are the longer term impacts of this loss of identity in my relationships. My friends, will they see me differently? I don’t think our relationship with my friends will ever go back to the same as it was before. Does this impact my long term career trajectory at my firm because instead of being the subject matter expert, or the person who has thought-leadership in this thing, I become the person whose husband has cancer. It’s something I’m grappling with, and it’s something that evolves at a rate going forward, but that has been my experience with the loss of identity as a caregiver.

Julie Clauer 45:17
Wow. Thank you so much for sharing this really insightful perspective. Sorry, I’m taking a minute. When I read the comments in this, I can’t tell you how many times I teared up, and right now I’m tearing up again. So I apologize. Okay, so the last space was around this life changing experience. It changes your life in many ways. And one of the questions we asked on this was around health. It’s not limited to that, but in terms of health, physically and emotionally, 68% said significantly impacted, 27% said somewhat impacted. So not surprising that it’s significant. It impacts people broadly, caregivers broadly. We didn’t ask if that was good or bad, actually. We didn’t ask in a good way or a bad way, like, does it help your health? But in terms of the comments, I just wanted to share that a lot of the comments definitely were, were overwhelmingly challenging comments, but with some positive pieces weaved in. This idea of decision fatigue and Ru spoke to that a little bit in terms of what to have for meals, and that’s exhausting. Everything becomes harder and everything becomes more challenging, was the essence of what came through on this. But there were some pieces of positive space around feeling honored to be able to do this for their loved one, and we actually are leaning on each other more together. I wanted to just share that, even though the survey was very biased towards sharing the challenges. There were pieces that came through, and we’re going to hear a little bit from Adrian about this part of it as well, which is that there’s some positives that come out of it as well. We’re going to talk about the challenges, because we specifically asked about those so in terms of, what are the biggest challenges you face as a caregiver? This was the list that we provided, and they could check all that applied. Everybody could check all of them if they wanted. They also could enter their own, which is where a lot of the additional insights and commentary that I’m sharing came from. Across the board, this idea of managing stress and emotional strain and the uncertainty of the future were extremely high. Uncertainty featured even higher with stage IV caregivers, not surprisingly, but that was almost universally checked among stage IV caregivers. This idea that those are really the biggest challenges they face and when we look at things in terms of solutions, we talk a lot about things like financial strain, and financial toxicity of cancer, and support and resources for caregivers and respite and things like that. Those aren’t inconsequential. Almost half of people also said that they’d be interested in those but I think it plays to the fact that the kind of more tactical things might be more handled for people, and there are some ways to manage that. People talked in terms of the financial strain, that they’re leaning more on family and different avenues like that, which doesn’t mean it’s not a problem that needs to be addressed, but I think that what it does show, is that these other ones, there’s very, very little that’s addressing them. When we asked how people cope with these challenges, again, they could check all that applied. When you look at the numbers, they’re a lot lower in general. Actually over 25% of people didn’t select any, and in the comments said, “I cope. Really. Like, there’s no coping” – kind of thing, which I think is, again, very telling of how people are feeling and what they’re experiencing, and how the tools to support people aren’t there for them. So in their own words, some of the comments that we that took from people in terms of some of the challenges – but again, there are some where there was some positive – there was one quote here, and then I want to hear from Adrian, because he can represent that voice in this regard, and not that everybody else on the panel doesn’t also feel the positives. I think everybody has pieces of all of it, but Adrian articulated that that’s something that he’s very passionate about. So, Adrian…

Adrian Griffin 50:15
Hello everyone. My name is Adrian. I’m here on behalf of my wife. It’s kind of funny how our journey started. This year my wife was at the ripe young age of where she was in the category to start getting colonoscopies. Ironically, this was the very first one that she had and they found a few polyps and everything in there. One day I came home from work, and she works from home, and out of the blue, she said, ‘I just got a phone call that one of my polyps was cancerous, and I have cancer”, and it really didn’t seep in at that moment. I was like, “Okay”, went and laid down, took me a nap and everything, because I go to work pretty early, and just out of the blue, I just woke up and was like, “What did you tell me?” And luckily, she had a second call from the doctor who really explained everything that was going on for it, everything, but it was eye opening and a shock at the same time. Because nobody ever wants to have that call. Nobody ever wants to hear anything like that for themselves or more, for somebody that they truly care about, and everything that’s been a significant part of their lives. We’ve been married for 26 years, and we’ve known each other for close to 30 years, but the things that I’ve learned that have been positive for me throughout this journey that we’ve had together so far, is I’ve learned a lot about myself, what I’m capable of, what I’m willing to do for someone that I love and care about tremendously. I learned about how to push the boundaries that she has, to be sure that she’s doing the things that she needs to do. I mean, there’s pushback from it, but at the same time, she realized the things that I was doing for her was for the best. By listening, I was a big part of all of her doctor’s appointments, any appointments that she had, I made sure that somehow, someway, I was going to be there. I didn’t want anybody else to be there because I realized that me being the primary caregiver for her, I needed to know. I didn’t want it to be second hand, anything missing or misunderstood that I didn’t know about. So it really helped me, as you all were saying earlier, it helped me. I started doing my research on day one on this type of cancer that she had with colorectal cancer, all the different treatment options. It pushed me to say, we’re going to get through this. We’re going to make this happen. It wasn’t a “she”, it wasn’t a “me”. It became a “we” thing. From getting her out walking, changing both of our dietary needs, from when she had a first surgery, from when she had an ileostomy bag, realizing that I had to be her cheerleader, because there were so many times that I could see it in her face how she was feeling, and I knew it was my job to be real with her. It was never where I belittled anything that she was going through, but I made her understand that I was there. I made her understand that she’s not alone. I would shake her hand. I would sit with her. When it came to learn about changing her bag and everything on a regular basis. We created our own routine for it. Was it kind of funny? “Hey, let’s try and get this before she starts acting up.” And things of that nature. It became a challenge. “Oh, we’re going to beat this” type of thing with us. So we found some smiles and fun. Found some silver linings, even when things were down. Because we did, the most important thing that we did, we learned to communicate. That got us through so much. It got us through so many headaches. It got us through so many down times to where we are now. I can’t push that word enough, is the communication part of it. Because sometimes when you go through something like this, you start going into a dark area, you start closing yourself off, you start shutting down. We went through the, I hate using the phrase, but we went through the pity party and things of that nature. That’s when you’ve got to start creating boundaries for everybody to let us know, hey, we don’t need the sympathy. We’ve already got that. We need the empathy, we need the understanding, we need to stay in the reality of it. But that also is where these groups, like COLONTOWN, Man Up To Cancer, all of those came into play for me, because these places gave me what I needed. They gave me a place to be able to voice how I was feeling without people saying, “I’m so sorry”. No, I don’t care about being sorry. I need these people because they are somebody that held my hand virtually, and say, “Hey, we’re here for you. No matter what you’re going through. If it’s in the middle of night, you need somebody to talk to send me a message. Hey, here’s my telephone number.” I was like, wow. And that made me feel a lot better on what my role was going to be as the care partner, the caregiver and everything else that was involved. I mean, I had my times where I did let the self care go, because if she sneezed, I’m like, “Oh my gosh, what’s wrong?” If she got uncomfortable, it’s like, what’s happening? She’s like, “I’m fine, relax.” It gave me a deeper understanding on how much she means to me. It gave me a deeper feeling. Understanding on, this is my life partner. I mean, I went through the things about the what if’s because, like I said, I have bad anxiety, but it helped me reel that in, because my anxiety was not going to help the situation. If she’s freaking out, I’m freaking out. We’re both freaking out, and we’re not getting getting anywhere, except just causing friction and putting a rain on a washed out parade that we already had. So, the things I found out about myself is that I can do it, I will do it. I have done it. And if I have to do it again, I will do it all over again, the same way that I have, because COLONTOWN, the people here, these leaders, they’ve lived it, so they were able to give me a lot of great advice, a lot of hey, look into this. Hey, here’s some great resources for you and everything, and it kept me focused on the end game. It kept me focused on being sure that I had that balance that I needed between taking care of my wife and also taking care of myself. It didn’t always work as I planned it, but in the end, I started finding myself a lot more in between what was going on. We were fortunate enough that with our health care providers, she made sure that I was there for them to understand, “Hey, he is here. He needs to understand”. No matter what report she had from her oncologist, from the surgeon, when we spoke to the surgeon, primary care physician, anybody. “Hey, look right here. It’s not just her. It’s a ‘we’ thing.” Sometimes you have to let them know that, because, like they were saying earlier, you can just be pushed to the wayside, because all they’re concerned about is with the patient. As the very first lady said, you have to advocate for that. You have to let them know that, hey, I’m going to be the one at home taking care of my spouse, my partner, my heart, or whatever, you’re not going to be the one that’s at my house every day helping me take care of this. She’s doing great. She’s been smiles and whistles through the two surgeries that she’s had, and all I can say is, thank you all for being there for me, because you have been the life preserver that I’ve needed to help me stay grounded, to help me understand everything, to truly give me a great path on where almost every week, I shared videos and pictures of Pam and I going walking on a regular basis, talking about activities that we’re doing, where we’re able to get outside the house and able to do a lot of things together. Because at first we were here, we started playing video games together, reading together, sitting together, watching movies. But there was always some something we were able to do to try to find a silver lining to keep us smiling even in the worst times. So that’s that’s my positive aspect on everything, on how it’s affected me. And I want to say thank you.

Julie Clauer 59:39
Thank you. Thank you. That’s all I can say, is thank you, because that really, again, is amazing. Sorry, I keep getting choked up. I’m going to transition to what would be helpful. We asked specifically on these items what would be helpful for people. They also wrote in items. Financial assistance programs, yes, you know these things. Everybody, everybody says, yes, these would be helpful to have more of, and we will work on those things. But on the next slide, I want to bring to life a little bit of the qualitative themes that didn’t come out in the specific data, because, again, either we didn’t ask the question or whatnot. So looking through all of the qualitative data, these are the pieces that I wanted to make sure don’t get lost, because they’re not in there as a stat, one, and we’ve talked about this here, is: respect and acknowledge the role. So, this idea that caregivers are distinct from the patient. They’re part of the team. A lot of comments were, I’m expected to do this instead of having it be a respected role in the process, and defining what that is for the individual. Because, I think everybody’s very different. Some people said, I go to these appointments in my son – in this case, it was a mother who said, “My son gets angry when I talk, and so then the doctor doesn’t want to hear what I have to say.” It becomes this complicated drama, but having those conversations to understand what is that person’s role. What is the caregiver role for your patient, is extremely important, and the solution to that should reflect the value the caregivers get from the role. So this goes to the point – there was a good example of this, which somebody said, “people say that I should take time for myself and I should take a break, but I really want to be there for my patient. So giving me these options of taking a break isn’t actually what I want for my role.” Adrian talked about that, to being at every appointment. So if that’s important for him in his role as caregiver, having solutions that help alleviate that doesn’t actually alleviate anything for him. It just doesn’t allow him to get the joy and the experience and the value that he wants from from the caregiver role. So really understanding what it is that people are getting out of the caregiver role, and making sure that any solutions that others develop really reflect that. For those caregivers, communication, support tools. So a lot of this came up here. Where a lot of this is, is just we’re in these stressful situations. People haven’t faced this kind of challenge, having new relationships with with doctors, with different professionals, a different experience with your friends that you know, than you’ve had before. And this lightning rod of the diagnosis changes everything. And that came out super strong. So this idea of kind of what, and how to help support people through those changes in those relationships, and what communication is needed. So, helping give tools to both caregivers, patients, employers, health care professionals, broader people, etc, to, in terms of how to engage with caregivers and helping, helping caregivers through those dynamics that came up a lot, even though we didn’t specifically ask that. This is not one size fits all. The needs vary. The timing matters. So not treating all caregivers as the same, because they’re not. We try to do that in COLONTOWN with our various groups, but also understanding that that solution should be that. So instead of saying, “okay, and we have something for caregivers”, really getting specific to late stage for caregivers, or whatever something is, that that creates a unifying need, and making about that, instead of just the fact that it’s this big, nebulous caregiver group. It came up a few times, so I just want to make sure it didn’t get lost, this idea of addressing to impact the broader family and circle. So, how it impacts kids, how it impacts other other support people, and that pressure is also on the caregiver. So helping caregivers with that. Those are just the pieces that I want to make sure didn’t get lost in just the data part of it. But now I would like to talk a little bit about the communication thing. Laura is going to help help our panelists talk a little bit about kind of those different constituents of people that caregivers interact with, and what would be useful for them to know.

Laura Videtti 1:04:47
The question that we’re going to ask of each of our caregivers is, “what is one thing you would like someone new to caregiving know about caregiving?” So Heather, do you have thoughts on that?

Heather Wallace 1:05:09
Yeah, if I had to tell somebody new to this at this point, it would be take it day by day, it’s going to be overwhelming, and you’re allowed to have those feelings, to just try not to unpack and live there, but just take it day by day.

Laura Videtti 1:05:32
Excellent advice. Adrian, do you have thoughts?

Adrian Griffin 1:05:38
Something that I would tell someone that’s become the caregiver is to set boundaries because you don’t want yourself and you don’t want your patient, your loved one, to become overwhelmed with so many people asking questions. Trying to be there and things of that nature. You want to have some rules and regulations in place and everything. Let everybody truly understand that. If you have significant people that can be there on a regular basis, like, say, for instance, my mother, we were very first fortunate with her being retired, she could help us out, so I could feel more comfortable when I was at work and things of that nature, to have someone physically here with my wife, but also at the same time saying, hey, this is what she’s capable of doing on her own. Don’t overstep that, because she still wants to have her independency, that feeling that she can do things for herself. So allow her to do those things. At the same time, if people offer to help you in certain situations, don’t be afraid to accept what some people might say as a handout. But it’s people who are really, truly trying to understand what you’re going through and want to do things to try and help you to navigate and get through things. Just don’t be afraid of being dependent on others because you can’t do it alone.

Laura Videtti 1:07:10
Good point. And Steve, do you have any thoughts to share for a new caregiver?

Steve Lancaster 1:07:16
Yeah, I have two quick ones. One is, we’ve always heard that, “it’s not a sprint, it’s a marathon.” That’s not even right. It’s not a sprint, it’s not a marathon, it’s a marathon followed by an ultra marathon followed by an Iron Man Triathlon. You really, really have to pace yourself. And then the second thing is, it’s fine to research, but you don’t have to know everything, even the doctors don’t know everything, and you’re not going to go to medical school overnight, right? Great to be prepared. Great to learn from this community of what to expect and the side effects and how you can help support your patient through their journey. And I’ve even been in conversations with doctors where they’ve been like, “Oh, I didn’t hear about that.” And, “You’re you’re giving us something, and you don’t know about that?” And I literally pull out the NIH, National Cancer Institute reports, and I say, “here’s the research.” It’s frustrating, but again, they don’t know everything either. There’s so much to keep up with, and it’s a constantly chasing, changing field. So don’t feel bad, if you don’t know everything. It’s just not going to happen. Give yourself some grace.

Laura Videtti 1:08:41
Good and Ru, do you have any advice for a new caregiver?

Ru Chee 1:08:47
I have two very quick thoughts. The first one is that you should always hope for the best, but prepare for the worst. That has been our journey for sure. You know, he had early good responses. We hoped for the best. But every step of the way, I think that, and right now what I’m struggling with is second guessing, is there anything else I could have done? And I know I did all I could, but hope for the best, prepare for the worst. Corollary to that, I think that I want to encourage all caregivers, all new caregivers, to have a very healthy disrespect, or conferred authority. And by that, I don’t mean that you’re rude or mean or nasty to your healthcare team. You absolutely shouldn’t be, but they don’t know everything, like Steve said. They are the experts in what’s out there. They’re the experts in the NCCN guidelines. Absolutely you are the expert in your patient, and that’s a very key part of puzzle. So have a healthy disrespect or conferred authority. Just because someone went to medical school and all that kind of stuff, wonderful, it makes them experts in what’s out there does not make them an expert on your person.

Laura Videtti 1:09:52
Very good. I just want to add one more thing, to that, is yes, you are the expert on your patient. And one of your roles can be to educate the medical team on your patient. Okay, so I guess another question that we had for the group is, “what is one thing that you would like a health care provider to know about caregiving?” I know Steve that you had some thoughts on that.

Steve Lancaster 1:10:32
Well, fortunately for me, my husband’s oncologist has been my hematologist for 15 years. So when he was diagnosed, I had somebody I could take him to. His name is Scott Omer. He’s a great doctor. He’s like, here’s my personal cell phone number, and there’s times when I’ve texted him. Like this weekend, my husband told me that he didn’t think that he was going to be here much longer, and it broke my heart. And so I texted him because he had treatment on Monday, I texted Scott, and I said, just be prepared for this. I don’t know how honest he’s going to be with you when you ask him how he’s doing, and that gave him the ability to bring up treatment options, so I didn’t have to do it. So I would say, you know, really, get to know your treatment team. Just because we’re not doctors doesn’t mean that we’re not smart. To Ru’s point, that conferred authority – just because you went to medical school doesn’t make you a God, right? We have done research. We know our patients. We’re seeing them day to day, and we know what they’re going through. Believe us when we’re having those conversations with you.

Laura Videtti 1:11:56
Thank you. Steve, Heather, what is one thing that you would like a patient to know about, caregiving.

Heather Wallace 1:12:05
Okay, so I cheated a little bit on this and asked our stage IV group yesterday for their opinions, because I wanted it to be more than just mine, and I have a summary of how I felt and how all of them felt. And most of the points have already been talked about, as far as communication, that type of thing. But as a caregiver, we don’t feel like you’re inflicting anything on us. It’s us against the cancer. We want to help, we want to fight, we want to make you comfortable, and we want you to know that you’re loved. You may need to tell us what you need or want at times, but we love you, and we choose to be here. We want to be here.

Laura Videtti 1:12:55
Thank you, and I think it’s great that you asked our caregiver community at large for this answer. Thank you. Adrian, what is one thing you would like someone in a caregiver’s life to know, who wants to know about what it’s like to be a caregiver?

Adrian Griffin 1:13:17
The one thing that I would want somebody to know is it takes time, that it takes effort, and it takes a toll on you, mentally and physically, because you can’t have one without the other. I would want them to know that, it’s easy to say, but harder to do, to find that balance that you need, because it’s a constant ‘cease all’ where you can be up at one minute, and then five minutes you can be down on the other side, trying to get the mobility to just try and move things back up, to try and find a fine, sweet spot where everything works. And it’s all about the attitude. It’s all about how you choose to deal with things. Because one thing I’ve learned from work and so many other things, because a lot of people say, “Why are you so patient with things?” Because I’ve learned that the amount of time that I can use getting frustrated, mad, rant and raving about things, I can use the same amount of time to try and find solutions. Because no matter after I finish with all the fru– … it’s okay to let frustrations out and everything. Sometimes you just have to let it go. But at the end of the day, even after you do all that random raving, throwing papers in there and all the kind of stuff running around, problems are going to still be sitting there waiting for you to fix them, but you have to also be sure that you have an outlet, that I might need you as a person outside of the caregiving to be that person I can talk to, but I can just kind of bounce things off of because sometimes, if things are overwhelming with my patient, my wife, or whatever, I don’t want to throw too many more things on her because I’m being bothered about something, just be there to listen. You know, you don’t always have to be there to give advice. You don’t always have to be there to say anything in return. Sometimes just be that person that just has an ear for the caregiver, so the caregiver can list things out that’s bothering them. It helps me get my thoughts together so when I’m ready to bring them back in, to speak to my patient about it, I’m more clear about what I want to say. Sometimes she understands when I’m ranting and just going all off key, and just throwing things out. She can kind of extrapolate and pull things what I’m really trying to say out, but sometimes I just want to be sure that it’s being understood and it’s good to have another ear to kind of help you understand what you’re feeling.

Laura Videtti 1:16:15
Very good point. It’s amazing if you have a friend that can be the sounding board for you and to hold that space for you to share your emotions with, kind of like what we do in the caregiver groups, but in your own personal life, to have that friend that you can count on. Ru, if you could speak to what you would want an employer to know about caregiving?

Ru Chee 1:16:44
Yeah, of course. I just want to preface by two things. Firstly, I speak from the perspective of someone who works in corporate America, and the vast number of caregivers out there who do not work in the kind of the seats that I work in. I have an office job. I spend most of my day in front of a computer. I have worked as a waitress in the past. I have worked other kinds of roles and I want to draw attention to the fact that there are many, many, many people who are not as privileged as myself and my husband in this system. So not getting into the matter of societal change and all that kind of stuff. What I would want the typical white collar office corporate American employee to know is that your caregiver is not doing this by choice. Your caregiver is playing five dimensional chess with work commitments, and family commitments, and treatment commitments, and trying to squeeze everything else inside there. For whatever it’s worth, kindness, understanding, creativity and realigning what it means to meet expectations at your job. All of that, whatever of that you can offer to your patient, to your caregiver, your employee, that is infinitely received with all the gratitude that I can. And I’m really fortunate. I work for a firm which has been immensely supportive. I am also aware that the well of kindness has a limit, but my manager has been creative in allowing me to figure out how I can take flexibility in working at the chemo sessions and off hours and things like that. So kindness, understanding, creativity that is going to be so important to people who you have working for you, who are caregivers.

Laura Videtti 1:18:30
Thank you, Ru.

Julie Clauer 1:18:41
Thank you everybody. I think if there’s questions or additional comments that people want to make from the audience, I would love that. I had one thing that I just wanted to share, even though I’ve had enough of the floor already. But one of the things I found really interesting, we were doing our Searching Safari course, which is, of course, to help people find clinical trials. It’s for patients and caregivers. We have an assessment on how somebody feels about clinical trials and their risk and everything like that. And it was supposed to be for whoever’s taking the course to capture that. The first time we did the session, there was a couple, but they both took it. They couldn’t believe it. They’ve been married, like, 25 years, and they said we did not expect the other person to say what they said. And so that idea of knowing somebody so well, but then also learning something new about them. Adrian talked about that, I think, when he was talking about communication, which I think is so powerful, because there is, you know each other so so well, but always doing that check-in to make sure that in this context and in this situation, that you’re still tracking, because you’re learning about -we’re all learning about – ourselves, whether we’re a caregiver or a patient, through these experiences, which I think is very, to me, surprising, exciting, nerve racking, and all of the above. So making sure that we we understand each other is so, so, valuable.

Julie Clauer 1:20:22
So I don’t see any other questions so I’m going to wrap it up. I want to thank our panelists so much for bringing to life the the ideas and the challenges and the insights that I’m hoping that people that are watching this either now live, but also the people that are going to watch the recording, can really help us identify what are our solutions, what are ways we can address some of these challenges in ways that are very, very mindful and respectful of caregivers. And what would actually be meaningful to everybody. So, thank you. Thank you to everybody who completed the survey. All 359 of you. We read word for word, multiple times, every single thing you wrote. And in addition to this presentation and presenting it at ASCO Quality Care Symposium, we’re using that to help influence, and help us think about programs within COLONTOWN and with partners. So it’s very, very valuable and I really appreciate it. Thanks everybody, bye.

Adrian Griffin 1:21:46
Thanks for letting me be part of the panel. I truly enjoyed it.

Laura Videtti 1:21:52
Likewise. Thank you everybody.

Stacey Runfola 1:21:57
You guys were fantastic. Can’t say enough honestly.

Laura Videtti 1:22:03
Thank you, Julie, for spearheading all of this. It was amazing. Really highlights me. So highlight our caregivers.

Adrian Griffin 1:22:16
Thank you. If y’all ever need me, for anything else, I will truly love to show my support, because, like I said, you all have shown y’all support for me and my wife and everything. So I would love to be here anytime that I can. So thank you all very much. Thank you.

Laura Videtti 1:22:32
Thank you.

Steve Lancaster 1:22:34
Take care. Y’all. Bye, bye.