Priya Menon: Good morning everyone and welcome to CureTalks. I’m Priya Menon, your host. And today on CureTalks, we are discussing managing mental health and cancer patients and their families during COVID-19 with Dr. Dianne Shumay from UCSF Helen Diller Family Comprehensive Cancer Center. Talking to Dr. Shumay on the patient panel are patient advocates, David Stanley, Jim Wickstrom, and Danielle Ripley-Burgess. So let’s jump right into our discussion today, we have with us clinical psychologist Dr. Dianne Shumay, who is Director of Psycho-Oncology at UCSF Helen Diller Family Comprehensive Cancer Center. Dr. Shumay, it’s a pleasure to have you with us.
Dr Dianne Shumay: Thank you for having me.
Priya: Dr Shumay, cancer patients and survivors had a lot to deal with even before the COVID-19 pandemic began. Now, the stress of coping with the chronic condition and the threat of catching those infections as additional illnesses is creating additional anxiety for patients handling both. What are cancer patients dealing with now with the additional stress of COVID-19 and if you had to pick one new concern you’re seeing in your patients related to COVID-19 what would it be?
Dr Dianne Shumay: Well, I’m observing that we’re all under some considerable stress right now. I’m myself, speaking from my home, and all of us are spending a lot more time in our homes. And so we’re all impacted by quite a lot of new kinds of stress and uncertainty, health concerns that maybe we haven’t faced as non-cancer survivors. But cancer survivors are experiencing some of the same stressors and then some additional stressors on top of that, but in some ways cancer survivors are really experts at facing a few of these things. For example, the idea of staying home, isolating in order to take care of your health, even the idea of confronting health anxiety perhaps.
So a lot of these things are really actually familiar with our cancer survivors. But there is some particularly increased stress, I think at this time, all of the things that are impacting people around financial concerns and social isolating and uncertainty about the future, all of those are impacting our cancer survivors. But there are some additional ones, I think that are particularly concerning and that has a lot to do with how the cancer is going to be treated now in this environment, knowing that the medical system is trying to respond to the surge of COVID-19 cases and the doctors are working hard to keep everybody safe. And so there’s a lot of confusion right now around medical decision making and interacting with the healthcare team.
Patients are asking should I be going in for the routine visits that I would normally be doing? Is my surveillance going to be delayed and that’s causing some anxiety. Should I call my doctor about a symptom or a side effect that I’m having? Or are they, would I be distracting them or are they too busy? What do I do when I show up for my in person visit? What is the screening process going to be like? Or how do I navigate and move through the lobby in the waiting rooms in this new process? And will I be safe in the waiting room and other areas in the clinic? And some patients are asking, who are newly diagnosed, will this delay my surgery, will this delay my treatment? Will the treatment decision making be different at this time?
And related a bit to this is concerned about their advanced directives. Advanced directives are a document that tells your treatment team, your wishes for care should you become unable to communicate? It designates the person to speak on your behalf. And it also gives general and specific guidance about what your wishes are. And I find that a number of my patients are scrambling right now to do their advanced directives. Perhaps they had it partially completed or they hadn’t really wanted to do it in the past. Now they’re finding that they would really like to have this ready. Patients may know now what they would like, should they be faced with an ICU stay, other patients may not really fully understand maybe what they would like. But there are many supports in place right now to help folks get their advanced care directives ready.
And finally, patients are very impacted and concerned about social isolation, especially when it comes to bringing family members and friends with them to medical appointments, or having family or friends visiting them in the hospital. Because of the need to keep folks safe, these visits have been limited and so patients are needing to navigate by themselves when normally they would have family.
Priya: So I believe those skills sound like more than enough, but we’re guessing that’s not all, not the end of it. Dr Shumay in fact, my next question was on this like we have, patients who are in for transplant or for their therapy sessions, as you were mentioning and who are family members and caregivers, probably coming from out of state to support and they try to stay near the hospital. But then because of the COVID all their plans have changed, circumstances have changed. And under the circumstances I believe an involved caregiver is so important for these patients. So what are you seeing, how are you seeing these patients reacting to these changes?
Dr Dianne Shumay: So this is putting, thank you for describing that, especially when it comes to a stem cell transplant type situation in which caregivers are really necessary and an extended stay in the hospital is very necessary. The difficulty for caregivers to be present has really shifted the planning and the support for patients. I have been doing telehealth video visits with patients who are in the hospital and finding that they are having to navigate the inpatient stay by doing video chatting with their friends and family. And so they’re not having any in person visits at this time. But the staff is doing quite a bit to facilitate as much of that video visit as possible.
Another thing that’s happening is that some family members are granted some limited permission to visit as well as family members are sending pictures and notes that are being printed out by the medical staff to hang in the room. And other streaming services of meditations and support groups are happening in the patient rooms.
Priya: So actually, that’s the condition of isolation of the hospital having to cope with something as difficult as a transplant and be alone at the hospital a lot of times. And thanks that you’re letting us know that the support that they get from the medical facility, people around the nurses and the help is really great. But do you think like, as we were talking about, I believe Dr. Shumay, that the normal problems that they come across, like in case if whether the hospitals have any capacity to take care of them in case you fall ill, whether they would have complications, probably like an infection of sepsis. As you said, problems that may require an ICU bed, would the space be available etc. common things that haunt cancer survivors at this point. So during these heightened anxiety levels, I’m sure they need help. So do you think they should skip their psychotherapy treatments, because to avoid exposure to COVID-19 at medical centers?
Dr Dianne Shumay: So there’s no need for patients to skip their psychotherapy visits, because I’m happy to say that as field psychologists and therapists across the country and world I’m imagining, have shifted our care to video visits. So, at UCSF, our psychology team at the cancer center, within a few days was able to convert our patient visits to video and we’re able to provide very effective psychotherapy and support to patients via the video interface. For those patients who don’t have a video or an internet signal, we’re able to do the same work via telephone. So it’s very important to us to continue to provide and in fact our services are needed all the more just as you pointed out Priya.
We are as busy as ever helping cancer patients through these remote aspects and we also have a number of supportive care. So later in the show, if we have time, I’d love to share some of the other supportive care programming that is happening via streaming and zoom groups and multiple other ways for folks to get that kind of support that everybody’s so desperately needs right now.
Priya: Dr Shumay, are the mental health needs of patients with other chronic conditions probably like heart disease or hypertension and diabetes, similar to those with cancer patients?
Dr Dianne Shumay: They’re both similar and different. If you’re talking about in the in the COVID-19 respect, to some extent, that vulnerability that our cancer patients are experiencing, our cardiovascular and diabetes patients are also experiencing that sense of vulnerability, that idea that they have the categories of illnesses that the CDC has said, are more vulnerable to potentially having a worse outcome with the COVID. And so folks are addressing those same concerns across all different kinds of medical conditions. And so in that respect, I think cancer patients are not unique in the sense of having an elevated sense of health anxiety.
But at the same time, all patients with chronic illnesses have developed some skill in how to deal with what’s happening as a novel experience for people who haven’t had to face their health concerns.
Priya: Really sounds like we all could use some mental health care right now. Dr Shumay, one last question before I hand over and open it up to the patient panel. What advice do you have for cancer patients who are feeling anxious or worried in the current health crisis?
Dr Dianne Shumay: So the first thing that I always want to say is that, to realize that worry is normal. One of the things that we don’t want to do is pour more gasoline on the fire of anxiety by being afraid of anxiety. And so to say, Hey, this is a unique time. There are a lot of feelings floating about right now. And to understand that those feelings are normal and to kind of accept the ups and downs of worry and anxiety as part of being human really, part of being mammals and humans. And in that acceptance of the fact that worry is normal, and is a practice of self compassion. So understanding that we are doing the best we can at this moment, it’s incredibly difficult.
And we want to kind of keep ourselves doing the best we can by encouraging ourselves, but also not really kind of beating ourselves up when we maybe aren’t doing everything that we think we should be doing. And so, self compassion is an incredibly important thing. And compassion towards others is a really, really important thing to be doing right now. Sometimes, when we worry a lot, and we get kind of into a silo of fear, sometimes one of the best things we can do is kind of take a deep breath and say Is there something good that I can do for someone else today? It kind of brings us out of that sort of vortex and out into a sense of doing something helpful and meaningful. And then I just want to say that curiosity is your friend. It’s interesting how I am responding at this moment. What is this interesting period of COVID-19? How are other people responding?
It’s the curiosity that can keep us amused, but at the same time, a little bit detached from a lot of the overwhelming feelings. And when I say curious, curiosity, I’m not recommending that you dive down that rabbit hole of news 24/7. We know that kind of imbibing too much news can really contribute to our sense of worry and anxiety and so I really recommend limiting the news. And what I suggest is limiting ourselves to only news that is actionable. In other words, news that helps us make a good decision that would be helpful for us – Limiting all the other news unless it’s good news. And so I’m going to put in a plug for John Krasinski’s – Some Good News Network. But really kind of thinking is there are there some bright spots that I can pay attention to, and then otherwise, the news that can help me make good decisions.
And then in that same philosophy, I like to harvest diamonds from experiences, in other words, even the most difficult experiences and they are difficult. A lot of grief is floating about right now. A lot of terror and fear is floating about right now. A lot of boredom and kind of irritability is floating about. But even in the midst of those experiences, as we kind of sit there twiddling our thumbs looking out the window, we can kind of see a bird alight on a tree and say, wow, that was a diamond that just kind of came into my view. And so harvesting diamonds and beauty can really go a long way.
And then, really leaning on the social support that is available. I know that a lot of us are very kind of lonely. And some folks who live alone, don’t have anyone in their home. But there’s so many things available online support groups, calling a friend, really lean on other people, even writing old fashioned letters would be lovely to do right now. And practice mindfulness, even if you’ve never tried it before; try some of these mindfulness strategies. There are a number of mindfulness apps and free online guided mindfulness programs. But really kind of taking a minute to learn how to stay present and get some distance from those worrying thoughts.
And you have a couple other things I just wanted to wrap up with, just to remember to do all the basic care for yourself, sleeping on a schedule, eating, drinking water, going out for a walk if you can, or getting exercise. All of these things are the basics that we need to do to be our best selves.
Priya: Thank you. Thank you, Dr. Shumay. With that I’m going to hand over to David Stanley to start with the patient panel discussion. David is a Michigan-based writer, teacher, a voiceover actor and audiobook narrator. His book Melanoma: It Started With A Freckle outlines his journey, the condition. David writes prolifically on cancer care and living. Over to you, David.
David Stanley: Dr. Shumay, you actually have already touched on a couple of the things that I wanted to ask you about. But one thing I didn’t hear you bring up was the idea of journaling as a part of this practice. Things like compassion, like a compassion wall, some of the hands-on kind of practical nuts and bolts sorts of things that a lot of us talk about. If you could go into those ideas a little bit more, I’d like to hear what you have to say.
Dr Dianne Shumay: Wow, that’s a great topic. Thank you so much. Yeah, I think that journaling can be a really helpful way to take what’s happening inside us that can feel really overwhelming and when it’s just like in our mind and kind of floating about, and we can take it and put it down on paper, and that kind of gives us a little bit of a distance from it. And so there are all kinds of really wonderful strategies to do that. Our Art For Recovery Program at UCSF is launching a wild writing course where folks are given a prompt and you can do this at home, kind of give yourself like a prompt like, how am I feeling today or what matters to me or there’s any number of prompts and then you sit down and for the for about 10 minutes, you just write without censoring, without having to have any grammatical perfection. This isn’t going to be your high school English teacher.
It’s really about sort of getting it out of you and onto paper. And you may read it after that, and you may not I mean, it may just be the process of kind of getting, having that flow. Other kinds of techniques are great. For example, a gratitude journal is really lovely. So if you have gone through the day and you’ve been harvesting some of the diamonds from the experiences, you see a rainbow in a window or you watch YouTube videos from health care providers having some applause. You can actually keep track of those, those moments in this gratitude journal so that over a period of a week, you can look back and see how many wonderful things are happening in this world even as so many difficult things are happening.
One suggestion that I have been giving myself and others is to write yourself a letter from the future. So now we’re like a year from now. And we’re looking back on what we did during COVID-19 of spring 2020. And in that letter, we’re describing all the wonderful attributes that we were able to display and the values that we were able to try to live and the compassion and self compassion that we showed. And so that we’re writing back during May or April of 2020. I was bla bla bla bla bla and you write this letter from your future. And then you look at the letter and you say, how can I live that more fully right now?
David: Okay, so I like those ideas. I want to ask you this. I’m a high school science teacher and I’m teaching from home obviously. And we’re starting off every lesson with a little bit of science because I’m teaching chemistry and biology with a little bit of a lesson about virology and Epidemiology because it’s in the kids’ minds. These are all high school kids. And last night I woke up shouting in the middle of my dreams. My wife had to wake me up actually, because I was in some bizarre way, I was like, training some kids in like Army Ranger training, and this fake what’s a good way to put it like a terminator or some sort of unseen terror that was supposed to be fake, came to life and I had to defend my kids against all of this and I was shouting and I’m doing a little reading this morning. And it turns out that many of us are having a lot of really weird dreams these days. I checked out a couple of the groups like Facebook groups that I’m in. And I’m far from the only one that’s having these bizarre dreams. Do you have anything to say about that, just in kind of, in general terms about cancer patients, we all have weird dreams anyway because we spent a lot of our life terrified. But can you speak to those dreaming sorts of issues that I think a lot of people besides me are having right now?
Dr Dianne Shumay: That’s really fascinating. And I love that you are a superhero in your dream. I love that you consider that responsibility towards the kids, and that you take that on in such a heroic way. And this notion of superhero, it can be really helpful right now because a lot of us feel like imposters, even when we’re at our most superhero best. So, that’s one theme that I love that you’re bringing up. I think we’re activated, generally more than, it’s an interesting thing physiologically because we kind of jumped between sort of very bored and very quiet when we’re kind of isolated at home to sort of sheer terror on the other side. So it’s almost like we’re bouncing between the two. But I think that a lot of especially sort of the anxiety dreams that are coming up have to do with probably a higher basal anxiety level during the day.
And again, I would not read so much into it as much as saying, Hey, this is where we are, as a world and as a people we are in this very uncertain place and kind of hold ourselves tenderly in that place where we are. And one of the things that I like about the dream research is that it shows something that I really love about human nature. And that is that dreams are a way that our brains can sort of resolve a lot of what has been happening emotionally in our days, the content of it isn’t as important as sort of the emotional content of it, and that our brains are able to kind of process and work through a lot of that emotion while we’re sleeping.
David: Very interesting. Thank you. I think I’ll step aside. We have a couple of other panels that have some questions. Appreciate it. I’ll be listening for the rest of the show. Thank you.
Priya: Thank you, David. Next, we have Danielle Ripley-Burgess. Danielle is a two-time colon cancer survivor, was diagnosed at the age of 17. She’s an award winning communications professional and the author of Blus: How I Barely Survived 17. She writes and speaks to encourage others that faith can survive. Daniel, you’re on. Please ask your questions.
Danielle Ripley-Burgess: Hi, good afternoon. I think some of my first questions have been addressed, but I think a lot like you said a lot of us who have chronic diseases, it feels oddly familiar. And like you said, like, kind of coping with anxiety and staying at home. And I think for a lot of us, it’s triggering some memories and difficult emotions. And so just any more strategies on how to cope and then also how to know when is it time to call for help, if it’s triggering a lot of memory from the past.
Dr Dianne Shumay: Well, that’s really, really good questions. I’m realizing that those of you on the panel today are much better experts than I am on the cancer experience. And I just want to say that I really rely, especially on my longtime cancer survivors, people who’ve been dealing with cancer for years, to really help me formulate a lot of my thinking and program development on these topics because you really, you really know what you’re doing. And I think that that’s the message. One of the messages that I want to really emphasize is that this is really familiar to all of you. And you do know how to do this like you know how to cope and going back to some of the strategies that have worked in the past, and bringing in some new strategies like really kind of figuring out how to have some psychological flexibility.
And willingness to try some different things and also to drop some of the rigidity that we often have about doing the things that are good for us if you follow my gist. But what you mentioned Danielle is something that a number of my patients have mentioned, and that is that during their previous experience with staying home and isolating, they were very sick or they were just in the throes of some kind of a new diagnosis or some very difficult treatments. And so during that time, there was a lot of fear, some trauma, even going on, and you know, maybe even some clinical depression type symptoms.
And so to be kind of smacked back in that same familiar kind of routine, not much physical activity, not much interaction with people staring at the four walls of potentially the same bedroom that they were in when they were convalescing. All of those cues can trigger sort of a conditioned memory of kind of a feeling of depression. So one of my patients was talking about saying that the depression and isolation were so reminiscent of recovery from a stem cell transplant, that she was feeling herself kind of sinking down into a depression right now. And there’s also the potential that some of our patients have experienced traumatizing and very anxiety producing kind of experiences in the process of cancer. And so a lot of those memories can come flooding back right now.
I would answer Danielle that, my first answer to your question about when you should call is to say, I think that cancer psychologists and other support folks and programs can be helpful for everybody with cancer at any point. I mean, it’s really about thriving and kind of being the best you possibly can be and also, as a kind of a preventative to continue to have the best coping strategies and the most resilience no matter what’s coming your way. But I think that if you do find yourself kind of depleting your usual coping strategies that you’re finding that you’re either not able to access the things that you need to do well, or you’re finding yourself resistant to engaging in the things that you know to do well, or you’re finding that you’re getting sort of more symptoms of anxiety and depression.
And it’s, I would say that you would definitely benefit from reaching out to somebody who’s experienced with working with, especially cancer patients. And, I would encourage you to reach out, there are a number of resources that we can point you to, in order to find some support.
Danielle: Awesome. Thank you. That’s so helpful. Yes, I’ve heard I felt that and I’ve heard it from the survivor community of just what you’re saying and what was to what is now so that was really helpful. The second question I had is, I know mindfulness and meditation and prayer can be really helpful during times like this. But sometimes it’s really hard to calm the mind with just so many thoughts and distractions, whether mentally or I know I’ve gotten a nine year old here. Whether we’re at home or even like with others, it’s hard to be still. Any tips or strategies to try and get to that place?
Dr Dianne Shumay: So, really, really good question, Danielle. So glad you asked that. Because I think that sometimes when people say do mindfulness, the implication is you should be able to just quickly get into a calm mind state. And if you can’t, something’s wrong, you’re not able to do it or something. I would say that, if you were to watch your mind and observe it as an observer, you might notice that there are times during the day and times during your life when your mind is busier, and generating a lot more thoughts at a much more rapid pace than at other times.
And sometimes that can be that can increase your anxiety and your anxiety can increase the busyness of your mind, you probably have noticed that. What I would say is one, welcome the fact that your mind generates thoughts at a rapid pace sometimes kind of get some comfort around the fact that this is a normal job of the mind. The brain is an organ that generates thoughts, and it generates all kinds of thoughts. Some of them are nonsense, and some of them are helpful and some of them are neutral and some of them warn us and scare us. I mean, there’s just so many thoughts that our brain generates. It’s just as part of its job as an organ.
We know that when we’re more kind of anxious, more riled up, we’re going to have more rapid thoughts in our brain and are going to be less likely to kind of calm down. We know that if we’re drinking caffeine, we’re going to have more of that. And so, kind of paying attention to some of those basics in terms of, maybe I’m sure running on extra stress right now, is there some way that I can kind of give myself some calming, one way would be to reduce some of the stimulation I know that might not be possible or isn’t possible and you have a 9-year old or other kids running around. Another thing to do is to exercise is to move your body because I think many of us are not getting as much movement as normal. And so get out there with the kids and like do a dance party. Just kind of work off some of that extra energy.
And then lastly, a really great breathing practice can really bring our overall arousal level down to kind of a calmer level and that breathing practice is super simple. It’s really just breathing deeply and exhaling twice as long as our inhalation. So we’re just kind of breathing in and then we’re doing a very slow exhalation. And even if you do that once, or you do that 100 times in a row, it’s always very helpful to kind of bring that overall physiological anxiety arousal down. I hope that helps.
Danielle: Yeah, that’s super, super practical. Thank you. My final question is about boundaries like healthy boundaries. So I know the patient I want to help others through this, especially as Oh, I can relate to how you’re feeling whether you’ve had cancer or not. But also practice self care. So when it comes to setting a good boundary for self I don’t know you have any ideas for that?
Dr Dianne Shumay: That’s lovely. I’m glad that you brought this up because I know that there are many of us in the helping worlds who and with their helping personality who kind of overdue and, a lot of people have been making the analogy of the put on your oxygen mask your own, before you put on someone else’s. And a lot of these things are great advice, but it’s hard to figure out how to implement them in the moment. We feel the need, we see the need, we want to fulfill our part in it. We feel guilty when we don’t, how do we manage that? And then maybe later we realize we’re depleted or we’re exhausted, or we’re at the point of, irritability, and we’re snapping at everybody, which doesn’t turn out to be a kind thing, I guess.
So what I would say is, you can take some advice from David, and get a nice journal, and write on one page – all of the reasons why you want to help others, all of the values that you’re living when you help others. You want to be a kind person, you want to be a generous person, you want to contribute to the world, you want to be a supportive family member, whatever those are, write that on one side of the notebook. On the other side, write all the reasons you want to support yourself, that you believe that good health is important, that you think that you are deserving of your own self care, whatever that is, has to be your own words, not mine. And then as you look down at these two columns or these two pages – one where you want to support others and that’s all true and good and you want to be about those things and one more you want to support yourself which is all true and good and you want to be about that.
Then with that kind of a bit of a distance, start to make some decisions about how you can go ahead and help others while helping yourself or how you can pry it towards yourself a little bit. And, and look back at this notebook when you’re feeling confused about it. Or when you need to make a decision in the moment and this will help you remember that it is important to you to take care of yourself and for good reasons.
Danielle: Well, that’s a great idea. I love that. Thank you. I now pass it to the next person.
Priya: Thank you Danielle. Our next panel member is Jim Wickstrom. Jim is a cancer survivor and advocate helping newly diagnosed prostate cancer patients understand proprietary treatment solutions. Jim, you’re on.
Jim Wickstrom: Well, thank you. It’s really a coincidence some of the comments made here because I’ve done journaling with students before. And writing things down is such a powerful way to really resolve and release some of the emotions we have. And coincidentally, I taught a dream unit before, sixth graders, and we had the kids write down what their dreams were about, as part of a unit. I was working with a therapist at the time, who taught with me, and it was so wonderful for the kids to be able to resolve things by writing them down, or just cryptic notes. So that’s kind of on a side note. I have something to bring in here. I’m not sure. And here we are in 2020 zooming everywhere. And I’m going to give you some interesting trivia you may find that’s going to be on Jeopardy in a decade from now, because 35 years ago, Aretha Franklin foreshadowed what we’re seeing right now in 1985 with her song, Who’s Zoomin Who? So I’m just throwing that out there. This has been foreshadowed already. Gonna be a Jeopardy question anytime now. My first question is I’m a political animal, we’re looking at the large picture here. We don’t even know the breadth or the extent of the coronavirus outbreak because as Dr. Burkes had shared, she’s only getting 50% of the data. That’s true, because we are under reporting for a variety of reasons. So, this will probably go into 2022 in some form or another till we can actually have a vaccine created, tested and immunizing all Americans. So my question is, the emotional interventions you’re mentioning are wonderful. We’re all trying to be in contact at risk apart but people need to touch and down the road is there a time you think when people will be able to touch other friends of theirs who they desperately need to?
Dr Dianne Shumay: Wow. Jim, thank you. You have just hit on something that is a very significant point of grief for me. And I know for many, many, many of us is missing that touch and wondering when we’ll be able to touch those we love, when we’ll be able to hug, when we’ll be able to kiss when we’ll be able to provide that kind of support and comfort in a physical way that Danielle was talking about. This is just incredible. And just to kind of feel that feeling of the grief that is part of this. Of course, I don’t have an answer as to when that can happen. As a psychologist, I’m not an epidemiologist.
But I can tell you that this is an incredibly important part of our experiences as really as mammals, not just as humans, but this need to just kind of be with each other. We evolved incredibly as social beings, and I’m finding that we are learning to connect, even in this short time that we’ve been forced to do so by Zoom and by phone. I think we’re evolving even now to start to approximate some tiny piece of connection that we would normally have. But I don’t think this will ever really substitute.
And one of the things that I’ve been thinking about is I was reading an article in The New York Times about kind of what might be going forward for us as we wait for a vaccine and things are uncertain is this idea of the hammer and the dance, in other words, staying sort of incredibly socially isolated, and shelter in place and quarantine, versus kind of moving out into the world with some populations or some people are able to move about others stay quarantined, and kind of moving this in waves over time. I think that scenario is going to be incredibly difficult for our cancer survivors and patients. I think that right now, where most of us across the country are kind of hunkering down and sheltering in place as things open up and certain people feel comfortable or are given permission to kind of move about, our cancer survivors and patients may not feel as safe or may still be advised to continue to quarantine. And so I’m anticipating that the emotional and mental health fallout from that for our cancer survivors is going to be immense
Jim: That’s the other statement too. In your presentations, Dr. Shumay, you share a powerful message of hope, emotional resolution during these times. How are psycho oncologists getting the message of mindfulness of self compassion, of psychological flexibility out to all Americans because we seem to be living in a boom of our own box that we don’t step out of where we have some people never haven’t gone out in five weeks out of their house, literally. And there are other people who are protesting, how are you linking to other media or national publications to get out the messages that are so valid that you are sharing?
Dr Dianne Shumay: So more powerful people than myself and I feel very powerful today on this forum. I think that we’re reaching lots of people and I’m really looking forward to kind of helping in any way that I can through this forum. And I would encourage others who are listening to also do what you can to help spread this kind of really good and important information. But at UCSF, one of my colleagues, a psychologist by the name of Dr. Alyssa Apple, has compiled a fantastic collection of resources and they’re available to anybody and she’s also been doing interviews such as on NPR and elsewhere. And she has compiled with her team, a number of resources to support your mental health during COVID-19.
And this is for folks across the board, so cancer patients as well as patients of any kind, regular folks without cancer, as well as frontline responders and others, family members, and it can be found on the UCSF psychiatry website. And I can share that with listeners if you’d like. And this collection of resources is just fantastic. She has reached out to virtually every expert in the field from Master psychologists, who are doing video demonstrations of psychological first aid techniques to Masters in different contemplatives of spiritual practice.
I think that this is one of the experiences that we’ve been having over and over again with our work from home phenomenon where we lose connection temporarily. I was talking about Dr. Alyssa Apple’s website, where she has collected resources from Master psychologists and others from across the world into one location. And I also just want to say that many cancer-related programs have gone online and I want to do a shout out to our Art For Recovery program at UCSF which delivers art experiences via Zoom and YouTube streaming and Facebook and organizations across the country are doing the same.
Jim: Wonderful. For me, I really enjoyed today’s presentation, which sticks in right now are places like Georgia and Arkansas in Florida, potentially opening up more risk to all of us. And I see the people I talked with who are men dealing with prostate cancer. They don’t know how to resolve themselves or ask for help like women dealing with breast cancer, for example. So in these other states, there’s way too much bravado going on against a pandemic. And I’m just hoping that, like my question was, we can get the message out to those states that are going to be at risk for whatever either nursing homes, to regular people who are going to the beach, who’re going to a bowling alley for example, and not realising, not just physical risks but emotional risks to their family too. So I’m just hoping the word gets out on forums that people listen to, that are not just people who would look for a psychologist or look for something intellectual. Does that make sense?
Dr Dianne Shumay: Yes, absolutely. The public health message, it’s an incredibly difficult type of message to get across because it requires people confront something very uncomfortable, which is fear and vulnerability. And so folks are really hesitant to be at the mercy of those difficult…
Priya: Yeah, I think we’ve lost Dr Shumay, let’s just give her a couple of minutes her internet is fluctuating looks like. Please continue Dr Shumay.
Dr Dianne Shumay: So I was just talking about the difficult emotions of fear and vulnerability and how oftentimes this kind of resistance and bravado is an instinctual response to kind of push back against some feelings that are so difficult to confront. And sometimes, it makes for a very difficult public health message and intervention to try to help people to understand what the information is when it’s very difficult to hear for them.
Priya: Thank you, Jim. Thank you very much for those questions. Dr. Shumay, maybe we’ll just open it up for some audience questions now. I’ll read those questions out and you can probably give quick answers. First one is psychosomatic issues are we seeing in cancer patients and survivors in the current pandemic situation?
Dr Dianne Shumay: So by psychosomatic we usually mean physical symptoms that may have a relationship to emotional experiences. So it isn’t necessarily that the physical symptom isn’t real, it’s that it can be worsened or brought on in the presence of more emotional symptoms. So one thing that I’m seeing is that which is really common for cancer survivors is this kind of vigilance to symptoms. So thinking, wait, do I have a sore throat, do I have a headache? Is this cough related to COVID? – just an increase in kind of paying attention to physical symptoms which may or may not be serious.
Priya: Okay, the next question Dr. Shumay is, I know we’ve been talking about coping mechanisms for cancer survivors. So the question is what can family members, friends and caregivers do to help ease cancer patients’ anxiety and depression and during the COVID-19 crisis?
Dr Dianne Shumay: Well, there’s a lot that supportive folks, family members and friends can do for all of us. Like I said earlier, we really rely on each other to get through everything that’s hard. It’s really about like our support of each other, that really helps bring us through. What I would caution: I know that this is happening where family members are getting quite upset with cancer patients or their older family members, who they feel aren’t taking good care, to stay home, stay out of grocery stores, that sort of thing. So what I would say is that, on both sides, that that’s coming from a loving place. So the family members really are caring about their more vulnerable family members, but I would just say take a lighter touch with that. Don’t scold Don’t do something like fear mongering where you’re telling them that something really bad is going to happen to them. One family of a cancer patient – they all got on the phone with her and told her that they you know that they thought she was going to die if she gets infected with COVID and that caused her to be very scared and she was crying. So take a lighter hand and not do too much scolding. But step up and help bring food, bring encouragement, call and give loving words of support.
Priya: Thank you Dr Shumay. And my next question is how should we talk with our oncologists to learn what steps we will need to take specifically if we need to do? Specifically, I believe they’re asking if they go to the clinic, like if you have to go to the clinic, how should we talk to oncologists to learn what steps need to be taken?
Dr Dianne Shumay: So I think that, at least our Cancer Center at UCSF, and I’m assuming cancer centers across the country have a series of steps and policies and procedures in place at this point around kind of what patients need to be told, what they need to do. So I would encourage patients if you have a question, to go ahead and call your provider. It’s important that you don’t sit there and wonder that you don’t kind of catastrophize without getting information. If you have a specific question to go ahead and call and ask, and that you will likely be told some information that can help you make the best decision.
Priya: Last question, who is particularly vulnerable, and what can I do to support them?
Dr Dianne Shumay: So, if we’re talking about a vulnerability from a psychological point of view, I would emphasize that anybody who is very, very socially isolated is going to have a much harder time. So people who don’t have family or friends at all are particularly vulnerable. people who don’t have fun or friends nearby. And of course, we know that people who have sort of, who fall into a category of kind of less resource are having a much more difficult time through this. So we know people who don’t have financial resources, people who have to continue working, even while they know that they’re potentially exposing themselves to getting sick. People who are from different marginalized kind of demographics, people who don’t have resources or who don’t have the same access to video chat or Internet Information, your neighbors who can’t get their own groceries, reaching out to the people in our communities and in our networks who have more needs – I think this is a way that we can really give to each other at this time. And when we write that letter to ourselves from the future, we’re going to say we did the right thing and we did what we could to help each other.
Priya: Thank you, Dr. Shumay. I think that has been a great hour of discussing psychosocial support for cancer patients and families during this time of COVID-19. Dr Shumay, it was a pleasure to have you with us, and thank you for your time and all the information that you’ve shared with us today. Thank you. As the world grapples with COVID-19, the population worldwide is escalating into negative psychological reactions like stress, adjustment disorders and depression. Feeling under pressure is quite normal in the current situation. We’ve had Dr. Shumay give us coping mechanisms like you harvest your diamonds, reach out to social support, practice mindfulness and the best of all, write a letter to yourself from the future. So stay informed, stay safe and reach out for help as required. We thank UCSF Helen Diller family Comprehensive Cancer Center and the audience at this talk will be available on curetalks.com, please visit our website for details on all upcoming talks. Everybody, stay safe and thank you very much.