 She works mostly with the Lithuania and myeloma patients. She also cooperates with patients of myeloma, Slovak myeloma organization, and the group of patients after Bond Myeloma patients. And Slovak is yours, Susana. So good morning everyone. As it will say, my name is Susana. I'm a clinical psychologist and I was asked to present a psychological aspect of coping with chronic disease, which I'm really honored to do. And I prepared this presentation. Actually, I put five main messages there which we will go through and I will explain why it's important to bring this to cancer patients, myeloma patients, patients coping with chronic disease. And at the end of the day, probably for everyone of us, I have to say that I know what I will be speaking about because I'm trying to do the same and it's not easy even if you don't have chronic disease. Many of the things you will know, many of the things you all do as I'm listening these two days, or we all do for us and for our patients. But the thing of this presentation is to give it the psychological context to show how important it is to work with the soul, not only with the physical side but also with the psychical side of the patient. And I would say psychosocial because the relationships and all the social background is at least the same if not more important during the treatment. Yeah, that works. So I was trying to put the myeloma disease into some kind of maybe just to say like this is how it works when you have myeloma and then I found this picture and it was like, yeah, this is how it works when you have myeloma because sometimes you are up, sometimes you are down, sometimes you feel good, sometimes you're tired, sometimes you can just turn the world around and it's just like a roller coaster and this made me really, really happy when I found this ribbon part there because it's a symbol of myeloma disease and at the same time it shows that when you are diagnosed like at the beginning, I should have a pointer here and there we go. It's not very visible but at the beginning when you go up, up there and then you just put down, it's when they tell you you have a disease and everything is upside down and you don't know what to do with your life. After some time we get to know that myeloma is not like the end of the world and the life is possible with myeloma but it takes time to get to this point for the patient. So that's actually the time when you are down and going like, okay, it's up and down but I'm still alive, I can do my job or I can travel, I can be with my friends, I need to go to bed earlier but still it's okay and then the symptoms attack and it's just like up and down and twisted and everything so this is really like as I know my patients or patients that I work with, this would really fit basically how the disease is going with them and yeah, what I forgot to say at the beginning that I'm kind of interactive so I would give you some questions during the presentation and I would like us to cooperate. This is the first question, so what is the difference between patients with myeloma and all the other people in the world? So myeloma is a chronic disease for patients. Is it okay when they say something and I will repeat it? Okay, so we'll do it like this. First was the chronic side of the disease. It has ups and downs. It's a cancer actually so that's also like a stamp, you have a cancer. A lot of concerns for risky people like the life is risking they have to be careful. Is it okay? They have to live with disease for the rest of their lives so far. Many confusions. So it conquers your body. So it's a little bit of discrepancy that at the same time you are that kind of active person but on the other side there is the disease that affects the physical side. This is very nice what you say. Your body is not yours anymore. There is another person and that's the disease which is in your body. Okay, permanent disabilities. Exactly. So there are actually a lot of things. Pain, a lot of pain. Actually different kinds of pain. Also people are very tired or they have these moments when they're very tired which doesn't actually let you do the activities. So it's very special to be a myeloma patient. There are a lot of things and much more we can say there are much more that make myeloma patients special being different from other people. At the same time you said it you are the same person but you're not the same person anymore. So the part of you being the same person what is what we have in common or what patients have in common with us. With normal people I would say with people who don't have myeloma. What do we all have in common? We all want to live. The biggest one. We want quality of life. We want good life, good quality of life. We want to enjoy the life. That's a good one. We only die one day. Other days we are going to live so eventually everybody dies. That's what we have in common. I know a lot of myeloma patients who go to work just as I go to work and I don't have myeloma so there is that activity. So in the first moment myeloma patients are angry. How about the other people? Do we get angry? So we can say from that moment of anger when you got diagnosed you needed to be brave. I would say we all get angry but myeloma patients being diagnosed get different kind of anger. That strength that puts you through the disease actually through the rest of your life. Do we eat? Do you eat as patients? We have families. We have relatives. Emotions. Quite important ones. We have the opportunity to make choices. One of the biggest strength of all people. We can make choices. Very good. So there is... Something else? Like that. That's very true. It's not only negative. Myeloma patients got a disease which is chronic so they have a lot of time to go through all the life priorities. Let's say the choices. What is important? How we want to live. It's not as you said when you got a heart attack and died just like that. There is no chance to undo the mistakes of the life or do something better or different. Myeloma patients have this chance and I want to say it's a good for this slide because everybody has this chance to do this. Myeloma patients or patients with chronic disease somehow have to. If they are not totally blind to life challenges they just have to go through remaking the priorities in life. Whether they want it or not. So there is a lot of things we have in common starting from being human to something which is special for myeloma and similar to other people. I'm always thinking at this slide about people who have other disease which might be chronic or may not be chronic. I have to say I got through this point in my family not with cancer but with other type of disease which is definitely going to be for the rest of the life. It was interesting to me to see how similar to cancer patients it is even if you don't have cancer because this thing, the life is turning upside down. At the beginning we can realize later that it's okay, that it's upside down and I like it. So we are approaching message number one and the message is never stop living. It's very simple because even if there is something in your life that changes it's still your life. And I have this question in my mind that when you have a child or when you get a new job or where you... I didn't do anything. Okay? Or when you go travel to a beautiful country that was your dream ever since. Those are beautiful life changing moments. I've been through some of them so I can say that even the traveling can be a life changing moment. And those moments become parts of our lives. And then we have the disease and we are like something bad is happening, I don't want it and that's where we get stuck. But it's also only an event that happened in our life and the life is going on. And the fact is that we only have one life. We don't have seven of them, we are not cats. We only have this one life. So even if you have the disease it's not good to stop living it. There are moments, there is this shock at the beginning, the reoccurrence of the disease, the treatment when all the day is just laying in the bed and don't talk to me please, there are moments. I have to say that even staying all day in bed, even doing nothing is living your life because there are moments when we just have to stop and wait for a while. So how to live your life, I put it there. Myeloma is a new condition in life and especially as a chronic disease it will never disappear. So far we haven't found a way to make it disappear. So it will be there forever. I'm not saying it's good, I'm not saying it's bad. But this is how it is. It's staying there. We can change priorities as we were telling. We can change things. We can change people. I've met a lot of patients who said I'm not talking to that friend of mine anymore because she was just sucking my energy or something like that. And you know what? I thought I will miss her but I feel good. So it's just like moving from the comfort zone. Do something else and you will see that it's okay. Change yourself. Myeloma is already changing you so give it a space. Maybe it will bring you or bring us or bring your family or anybody to a better place. Let's change yourself but never, never stop living. Message number one. Go ahead. The control is actually like the main topic. What you are saying is that when you get myeloma you feel like you are losing control of your life and you have like there is nothing you can do about it. Doing changes, it will put you in control again because you are in control of doing changes. That's what you said. Exactly. That's it. That's the point that there is something you can do. There are things we cannot influence. We'll get to it later. And there are things we can. So that's what this should be an inspiration for. Do what you can do. Live your life. That's actually what we have to because otherwise we will be sorry about it at the end. So you lose control and then you get confused somehow about what's going on. That's right. We'll get to it. We'll get to what to do when we don't know what things are actually under our control or who have the potential to be under control. That's what lead us actually to emotion because that's a thing we cannot have under control but still we can do something about them. I found this picture which is about six basic emotions that all of us have. The scientists, psychologists found out about it because they could found these emotions even in newborns. So all the other emotions we learn throughout our life but these six emotions we are born with. Can we give them names? What are these emotions on the picture? So let's go through this. Do you see the green pointer? So this is happiness. The yellow one. Sadness. Which one? The blue one with the tears. Okay. It can be sadness. The red one down here is anger. Okay. Hope. Which is hope? The blue? This one? This one down here? Hope might be part of it but it's a surprise. It's a surprise, yeah? You can see the baby when you do this something like where are you, here are you and this step and the baby goes like we think they're happy but it's actually the surprise like you appeared from behind your hand. So what is left? This one up here. Any ideas? Feeling that you can't talk, it can be or maybe that you don't want to talk. It's disgust. I have two points for this picture. So we gave them names. Wine. Wine is a good idea but one is what is the purpose of these emotions? Just an idea. Why do we have them? Okay, that's very good. So it's a coping of what happens to us for coping. And another thing is what is the polarity of these emotions? Are they good? Are they bad? Are they positive, negative, comfortable, uncomfortable? You have to have all of them. It's not good or bad. I love you for this. Because I believe they're not good or bad. They simply are. Just like life and disease and that and everything. So maybe we can move to comfortable and uncomfortable which we like. We didn't get to the green one. So what do you think it is? Frustration. In Slovakia we say we get green from fear. Fear. It's totally the most protective emotion. I would say that we have one emotion that we love to have. And it's the happiness, the joy. We always want to be joy. We have this positive thinking idea like we have to be happy all the time which is actually pressure. We are not able to stand because as you see we have from basic emotions one comfortable, one happiness and five which we don't really like because it's not like, it's not comfortable to feel fear, to be angry, to be disgusted like what is this fault? You know, you can imagine a baby when you give it a broccoli or something. It's like no. So there is just to know and I have to say this is the strongest thing I ever told to my patient according to the feedback that came to me that we only have one comfortable emotion. All the others are like doing something that we don't really like to our body. Here is even written what the emotions are for and as I asked for the purpose you can see that the joy the pleasant one inform us about what is important. So when there is something important for us it makes us happy. Very logical. And then we have, let's go from down we have the anger when there is a problem when there is something that we don't like anger makes us fighting again that we have fear when there is something dangerous we got scared our body is in this kind of alarm state and we can actually save our existence through fear we have sadness sadness tells us what we really need I mean when I go to shop I'm really, really I can it's hard for me to decide what I want to buy so I always ask myself a question when I get out of the shop will I be sorry that I didn't get this thing and when I'm sorry then I buy it and when I'm not then I probably don't need it so it works like this This gust it's written very nicely that it rejects what is unhealthy and it's really good for patients because we want them to be healthy we want us to be healthy so when there is something I always tell them because you know there are all these restrictions like what to eat and what not to what not to eat and what to do and what not to do I tell them when you want to do it be careful but do it when you don't want to do it when you don't like to eat it for example meat in hospital they have meat two times a day on vegetables so I go like don't eat the meat if you don't want it and then there is the surprise which tells us that the situation is new so also something something alarming we see that we need all of them they tell us something every emotion we go through tells us something so the message is it's okay when you feel negative emotions this is the strongest feedback I got from patients that they were coming to me like I never heard this and I wanted to heard it that I'm okay when I'm said when I cry yeah it's okay especially when there is a stressful situation and coping with chronic disease is a very stressful situation with any kind of disease so it's okay negative emotions protect us prepare us for something bad prepare us for something unhealthy something that shouldn't be in our lives and there is the the bottom lines positive emotions may keep us happy but negative emotions keep us alive throughout the evolution that's what kept us alive because it was not about thinking like I can see the I don't know monkeys sitting somewhere and thinking about how are we going to surprise no it was just the intuition is built on emotions so they had this kind of stress reaction and they were running away that was fear and that kept them alive we have clothes, we don't have hair all around our body and we are now living under the trees but we have the emotions to keep us alive so let's feel them this is anxiety the biggest topic or one of the biggest topics with our patients I wanted to picture down there because it took me a long time to figure out for myself as a psychologist and upcoming psychotherapist and all the stuff what the anxiety really is we know it's not really an emotion anxiety itself it's a neurotic reaction of this fight or flight effect for stressful situation it's not just an emotion and then I got to an explanation as you know existential psychology being of Rogers, Maslow, Frankel and this kind of people and they explain anxiety just like you can see it on the picture there is the girl being put all together into one small place and there is also the circle under her and I would probably say that in Slovak language I call it it's like narrowness space around you the life space is really small and you don't have space to move you don't have where to go and you don't have what to do that's when and where anxiety happens to patients and it happens a lot to our patients especially in hospital and I believe we are not the only country where this still remains because patients are told what to do how to feel like patient is crying and the doctor comes and says don't worry, don't cry and it's like come on we just said that we have negative emotions and the cry is good to protect that so that our head or heart will not explode so there is this discrepancy between how the patient feel and how the patient is supposed to act which even make the anxiety bigger I found this beautiful chart where there are cognitions about cancer that are still present in our society, in our country and I believe it's in more places especially going from media and movies where you can see and all these campaigns of children having cancer and there are said parents which it's terrible I'm not saying it's not but it's making this picture of cancer really really bad and we already said cancer is event in life it's something maybe I would say it's life changing but it definitely shouldn't be life taking and this is just like to see when we go with this cliche ideas what it do to patients which are actually how the anxiety expresses in their lives I want to point your attention to research we are currently doing or actually I'm doing as part of my PhDs and I was comparing patients with multiple myeloma and patients with acute leukemia that I work with and we found that yeah well there is depression in patients but the depression that is being demonstrated in cancer patients would be like cases would be demonstrated any way that there is like some predisposition for having clinical depression but patients only have like some depression symptoms which might be side effects of the treatment or maybe just and mostly they are just in this particular situation of the disease anxiety is another thing there is a high level of anxiety and really significant level of anxiety for patients with both diagnosis but what I was really surprised the higher level of anxiety we found in myeloma patients significantly more than in leukemia patients and there is the questions like why is it like that I was asking myself I was asking other research researches which I was searching for so we found it might be the anticipatory fear of the future I have this friend of mine and she is always saying like I only have half a year to plan anything where to go what to do because in 6 months I have my next checkup and I know her for like 4 or 5 years and she is still in that smoldering myeloma state so she is doing pretty well she has this moment being very tired and then being overactive she is taking I think once a month she is taking some kind of infusion therapy or something like that and she is doing really well but it shows that she might say it in a discussion just like I only have half a year and then I can plan something else but come on it's not like when you say something is a humor it must be funny but when you take the sentence I only have half a year to plan it's not funny so we can see the anxiety behind here and we can see that it's mostly an irony being inside her that she has to cope with with the anxiety living life where any day something can break out like she says I want the hospital to be nice because any day I can go there to take a chemo or to undergo the transplantation or something so this shows that probably probably the chronic side of the disease is really a significant factor when it comes to anxiety I also love this picture because it's like it's showing one thing that in the anxiety circle you are pretty much close from other world and at the same time it shows that there is space in the circle so maybe we cannot do everything but there is still something we can do this is the message the message is learn to live in uncertainty I will tell you a short story about this I was undergoing training of bereavement of working with families who lost some of their members this was my teacher his name is Ruben Bilt I think from Spain or Argentina I'm not sure he was around 80 and he was a psychoanalyst analysed by Anna Freud so he was really a celebrity for me because somehow I got to personally know Sigmund Freud through this person and this is the last sentence he told us or told after I asked how come he's able to work with dying people and their families for all his life he was 80 or like slightly less than 80 and this is what he told me and I'm keeping in everywhere with me there is nothing safe in life nothing is certain actually that is the only certain thing we all have that's what my grandfather told me he said pass doesn't exist it's gone we can change it future doesn't exist and it's uncertain we can plan but it's like common we can plan whatever we want it doesn't have to happen we only have today and maybe not even today but we have this moment because there can be playing falling on us in few minutes and there will be no dinner which I would be really sorry but if you accept this if you accept the uncertainty of the whole life you can accept anything because you are actually able to live for this moment and then you can even accept your death and that means that you are free to live when you are not afraid of that moment because we always say the things like I will do it later or after I finish my PhDs I will lose some weight that's my favorite sentence I wanted to lose my weight when I was finishing high school then when I was finishing university and I mean now there is PhDs and then there will be the psychotherapy training and then I will have kids so there's not any meaning in losing weight so just do it now or don't say you can do it so learn to live in uncertainties message number three this is what I heard here before decision making and I said I would come there later I made this more of this picture of things happening in our lives which might be problem or doesn't have to be a problem but it's just like with having a kid it's not a problem it's a happiness but there are a lot of stressful things happening around it what I want to say to decision making we always think that we have this control over decisions and that we make it because it's good this way or that way as a psychologist I have to say that many times this is just our protection and most of all we make decisions for people to accept us for people to like us we don't know about this because it's happening subconsciously or unconsciously but it's like evolutionary we don't want to be alone we don't want to be like put out of the group so usually we just go with the group and then we are not really happy about the decision chronic disease myeloma, cancer whatever we give to this it's quite really nice it's chronic, it's cancer, it's myeloma so it's a lot of issues at the same time puts us to the point that you already mentioned that you are just you have to decide you are put in a position to move somewhere when you realize how fragile love to life is and that we want to do something with it so what I'm always showing is that when there is anything happening in life we have these possibilities we can accept the challenge or we can accept any decision that is being given to us mummies are this kind of person who tells you dress like this or keep your house tidy or that is not a good boy for you these are the sentences we hear we can accept that like yeah okay I don't like him or I want to dress this way we can decline them that's something we don't do unless other people do it so we can say I don't want to do it or mum sorry I'm going to dress the way I want I'm over 30 I can pick my clothes on my own and sometimes it's not that easy because let's say it's not matter but it's life and it's not telling you what to wear but it's giving you a disease to your life you don't want to accept it I mean who wants disease I'm not going like hey can I have one myeloma please no we just don't want diseases in our lives but we cannot say no we cannot say no thank you I'm not going with myeloma I'm not going with broken like I don't want to lose somebody from my family it happens we cannot say no and we cannot accept it so what do we do we can choose our perspective that's what we always have control of we can choose what we do we can choose what we think and even when we are like I don't know there's this extreme example coming to my mind it was myeloma patient lying in a bed for his last days and it was before Christmas and we had all this talking about what he wants to do before he dies about how he wants his funeral to look like what about talking to family what to tell, what not to tell how like we went through a lot of things this was done and we knew it will probably happen before Christmas and then he was like ok I want to tell you how I'm going to do my Christmas tree this year that was his choice he just didn't want to lay down and wait for a black empty space somewhere which is literally that least scary he just wanted to think about nice Christmas that was his choice so whether we want it or not we like it or not we make decisions for people to like us but we don't have to do it we can make our own decision choose our own perspective it makes us vulnerable but that's what we have psychologists, social workers patients, other patients patient organizations for who can stand by our side and say ok maybe your mother is telling you if you don't do this you are not my daughter anymore but then there is this psychologist saying you know what you may be not her daughter anymore but you will stay my patient you can decide whatever you want we give them the feeling they are not alone anymore we give them the freedom with this to make their own decisions this is, I have to say I hate positive thinking I hate the concept of positive thinking as it's being presented I already told you why I believe the most important thing is to accept reality which may not be always positive and we know how hard it is when you want to cry because there is a shock in your life being put upside down and there is also something like we don't want to fight it's just like that and it's better to proceed through that and be happy afterwards constructive thinking instead of positive thinking as a concept which includes the points that you see on the previous slide it means making your own decision choosing your own perspective making a plan I said it like don't make plans because they may not happen but you can make some ideas that are actually going to happen one day or that what you want to do and go closer to whatever that is I want to plan the Christmas I want to be at Christmas with my family I know I will probably die but in case not I want to plan it anyway and I think the most important thing is consistency it's the hardest thing as I said at the beginning I'm trying to follow these messages myself and I know how hard it is even if I don't have any chronic disease when I say I'll go for a walk for one hour walk three times a week believe it or not I'm not able to do that so far I'm still saying I'll do the PhDs my deadline is May 2nd and then I'll start go for a walk every second day so just follow what you plan because you're doing it for yourself and that's the thing you can do instead of what you cannot do yeah, message 4 it's another story I have to be short, I know it's another story from my life when I was in quite a difficult situation and I got to mental training and after the training my mentor told me that what is written there it's not easy what you have to do you didn't know what's waiting for you there and I know you liked it here but you know you have to move on, you have all the information you need and you know what you have to do just stop analyzing stop thinking about that stop considering what is just do it so anything we plan let's do it and then we can become from the small fish in the small glass being really anxious when there is no space the fish in a big glass it's shown here alone but still it's her space and she can call friends to come to visit so this is message number 4 just do it my favorite topic I have to say quality of life there is the definition from WHO and I also want to say what I want to say about this just consider what we all have in quality of life it's not a psychological topic it's like topic of everything we have material well-being physical, emotional activities social well-being and all the things going from there so we can really see that in quality of life there are hundreds and millions of things we can do for patients and to improve their and our lives so I chose these pictures it's coral reef during the day is on the left side from your view I would point it maybe I will not this is the night picture the colorful and this is the day picture kind of blue all the time what I want to say when you go diving at night and you have the light and you know there is all the ocean around you with all the threats there and you point the light in one place and there is this beautiful colorful everything but when you only look like everywhere when you want to have everything under control it's just like a sea but when you point at one thing which you can do and you do it right and you do it properly then it's a beautiful thing because life is offering one offering us a lot of challenges and it's not possible to do everything it's not so focused on what you can do instead of what you cannot do look at this beautiful beautiful reef these are the messages all together and I'm thinking about what is next I have one more slide that I really want to present you and it's why to do all this why to bring psychological issues why to talk about them why to bring social issues why to talk about them why to do more than just physical care as we are doing the research we realize that this is probably how it works I mean not only us I've read a lot of studies about this my favorite topic is quality of life and sense of mastery that's why they are here the red line which is like the cut-off line what is below it it's really low and what it's about it's significantly high that's basically when we don't give the psychosocial care how it looks like and you can see that what we really want to do is give the competence to our patients which means make the sense of mastery higher and lower the anxiety which means making their own space bigger sense of mastery is the feeling of the patients that they can control events in their own life basically what is happening they have under control we know there are a lot of things they cannot control everyone has those things we cannot control and then we have to point just like in the reef we have to pay attention to things we can do we have the competence to do and on the other slide I will talk to it there are three points that I think are important what to do when we are a patient organization or advocate or where we want to have them and those three points are communication appreciation and reality and then there is one more thing okay so that's the humility which is probably the most important for everything we do in the life because I have a lot of experiences of people who are standing in front of patients telling exactly those things I know how you feel and I'm just like I never told this to my patient I don't know how you feel I can try to imagine but I don't know how it really feels so tell me that's why on this other slide to communication first of all is listening we have to listen we have to ask otherwise we are trying to fulfill needs of our patients but we are not meeting them because we are not asking for what they really need we do a lot of questionnaires just basing putting questions on patients are doing answers and we are talking to them trying to talk them a lot you can see there is just like information leaflet and this is one patient of ours and we are always telling patient stories to other patients we write it on internet we do it on our personal meetings so that they can see that yes you can go through hard things and then you can go through pleasant things just like the roller coaster goes actually you can see down there the slide that I was presenting to patients and one of the most important things accepting limitations we know that there are some patients who say like okay tell me everything and they want to know all the names of the drugs they want to know all the names of people of doctors of nurses they want to know how much of the drugs they get when exactly how is it being you know the way of how how they get the drug so they want to know everything and then there are patients who say like okay give me what I need to know I don't want to know more I will ask when I need we need to accept that so just as I was talking to someone yesterday we need more brochures more presentations more meetings because we need to meet the needs of the patients accept their limits we also have this part where as a reality we are bringing to our patients that now only the names not the pictures of patients who deceased so deceased so just to show that well this is happening and we always have a candle or something to remember them and this is just to appreciation because we are doing everything I'm talking about today you are doing it every day you work with patients it's not something new it's just to point out that anything we do anything we bring to patients is the very important thing of showing them how to live how not to stop living we take them for walks we take a picture up there this one we had this myeloma day when we had trainers showing them what exact exercises patients can do to make their body work as good as possible we had actually maybe you know this one here is Matje Taut he's the Olympic winner in walking and he was the face of our myeloma day walking or this might be dangerous but walking is something they can do he actually came between us and we had an hour discussion with him and the patients were asking all the questions so it was very nice we had this beneficial concert with really famous artists in Slovakia and this is our new project when we are doing creative activities with patients who want and there are much more activities to make this a presentation of our society I just wanted to show that anything we do when the patients have a choice whether they can or they cannot or want or want to take part in this we do it to show them that the life is worthy and that still there is a chance to live and to be happy about it to have good quality of life it's just everything we were talking about I just wanted to give you the view that there is a lot of psychological stuff behind that we are providing to our patients through these basic activities and I also do it for them because I'm doing these kind of presentations for them explaining how they feel and why they feel so and what they can do about that so thank you for your attention I will be here thank you no problem thank you