www.able.co.nz Captions were made possible with funding from NZ On Air. Copyright Able 2016 CLICK! Hello! My name's Petra Kotrotsos, I'm 19 years old, and I live in Wellington, NZ. I'm Greek, with a big fat Greek family, who came in really handy at 6 when I was diagnosed with a childhood cancer. I relapsed four times from the ages of 6 to 15, so I've now been cancer-free for four years. But I'm now dealing with a new challenge where my body thinks it has cancer, so it's attacking itself. So if you're interested to find out more about me and follow me along my good days and my bad days, then I'd love to take you along. See you soon. ETHEREAL MUSIC Spent a lot of time in this room over the years. With my health, I'm always waiting. I'm always waiting to get better. And I had relapsed four times. And just as I thought I was gonna get out of this room, I was diagnosed at 18 with paraneoplastic syndrome. So my journey now is all about finding a way how to get out of this room and really live my life. On a daily basis now I'm dealing with paraneoplastic syndrome, and it's been produced in my body because my body thinks it still has cancer. So it's attacked the brain stem and it's made all the communications really slow, it's made them get muddled up. I'm dealing with having to think about walking and think about eating and think about looking and think about breathing because it's not automatic any more. (EXHALES SHARPLY) (COUGHS) So I basically wake up every day going, 'What symptom's gonna be my challenge of the day?' I've always flipped from being 'good Petra' and being able to keep up with my friends and being able to do what everyone else can do to being an unwell Petra. So that transition has always, kind of, been in my life of, kind of, flipping from one Petra to the other. Petra is, to me, a really courageous young person. And, um, I try really hard to really encourage her to be, like, who she really is. Yeah. Cos she really` she is really easy-going. The only thing that gets her down is when she gets frustrated cos either she can't do something or she's not well. Or, yeah, if there's something on like, you know, last weekend she missed out on a really close friend's birthday, you know? Well, two of them. Yeah. Yeah. I'm creating a vision board right now because I really like to visualise where I'm going and how I wanna be and how I wanna get there. So this is just basically me making it seem more real and giving me something to actually look at on a daily basis. So I'm cutting out things and sticking on things that I want my future to look like. And gives me something to work towards, and it's just another way for me to get myself there. My whole life is about judging where my body's going and trying to work out what it needs. EMOTIVE ACOUSTIC GUITAR Started when I was 6, when I was diagnosed with neuroblastoma. It was a cancer in my back, and it was about 6cm x 10cm, so it was pretty huge for a little 6-year-old girl. She was, to all purposes, to all of us, a really fit and healthy little girl. She just had a freak little fall where she fell off this roundabout while we were in Waikanae and, um, started to get quite sore on our way home. And then had quite a lot of trouble during the night with her breathing and not being able to get comfortable, so I thought, 'Oh, she must've broken some ribs or something,' so I took her to the doctors. We went for X-rays, and then they said to me, 'Send those through urgently.' And then he kinda indicated that they've seen something on the X-ray. And there's, like, this big white, shaded piece. George and I were so naive at the time. We were like, 'Oh, wonder what this white shading is. 'Maybe it's some bruising or something.' But obviously, that was the mass that they had found. I had the usual chemo, radiation, surgeries as, like, the normal kind of protocol. And then after that, yeah, she was cancer-free for about three and a half years. And I remember just at the time, just before it happened again, dropping her off to school and thinking, 'Oh, she's looking so good.' Petra kept complaining about back pain, and the oncologist thought I'd better have another little look into why she's still having some back pain. And then, um, they realised it had come back. I was 9. I relapsed again. And then when I was 10, I relapsed again. And then when I was 15, I relapsed again. Since we'd already done the chemos and the radiation and since it wasn't really working, we decided to do a different approach. So we did a spinal reconstruction, where the doctors went in from the back and just took out the whole area. So we took out a couple of ribs and a couple of, like, vertebras from my spine and just lifted the whole area out so there was no chance that cancer could go anywhere. So that ended up being successful. So since then, I've been cancer-free. And so that's really nice to say. PEACEFUL MUSIC So, when I went to the year 13 ball, that was probably the peak of me. I was going to school, I was ready to get my licence, hang out with friends all the time. And I went to the ball and I had such an amazing night, and I woke up the next morning and my whole world had just changed, you know? And we at first thought I was just dehydrated, so I went to A & E and I got rehydrated, but, you know, for months I still wasn't` I still wasn't good. So now I've been diagnosed with paraneoplastic syndrome caused by anti-Hu antibody. That's the full name of it. CLICK! So we're trying out chemo ` again ` to see if that'll work. So I feel like a bit of a walking experiment. Instead of having it to fight cancer, I'm having it to trick my antibody that my body has produced to fight the chemo rather than taking my healthy tissues. In the last year I've been having chemo once a month, and so it's been really hard to plan things because, you know, chemo ends up taking out three weeks of my month, you know ` the chemo week, which I'm feeling really yuck about; and then I have the week where my counts have dropped, which I feel even more yuck about; and I've got the week where I'm recovering. So it really takes out three solid weeks out of my month. I've only got one week to feel good and to enjoy myself because I'm feeling good. And then I end up right back at square one where I've got chemo again. At the moment, I'm just surrounding the antibody with really positive lights and colours. And now, um, you know, once it kind of grows to that, I'm surrounding it with all my positive colours, like healing and happiness and love to try, you know, get the antibody to just deactivate and know that it's safe and know that it doesn't need to attack any more. A really difficult thing that happens a lot is since I'm going through so much and I'm getting so overwhelmed and I'm getting really sick, it's a natural instinct to cry. But for me, crying means a breathing attack. I don't know why. I don't know what experience has made my body think that's the way to cry, but when I cry, it basically closes my whole throat up and I feel like I can't get air in or out. Since crying turns into a breathing attack, the art is a way for me to express my emotions. CLICK! (SNIFFLES) Um... (CLEARS THROAT) (EXHALES) I was, um, watching videos on my hard drive of` um, I used to do these video diaries um, when I went to parties and when I was out with my friends and having fun. Um, and then I think it just, kind of, reminded me of, um... how I used to be and what I used to do, and... Kind of feel a bit stuck on, like, what I can relate to with my friends over, you know? I don't understand, or I don't go through what they go` Like, I don't go to uni, I don't go to t` I don't go to town, I don't go and drink, you know? So it's` that's everything that 90% of the teenagers my age do, or the 20-year-olds do. And go to work and` You know? And I can't do that, so it's just... HOPEFUL MUSIC TINKLING, UPBEAT MUSIC Hey, Pet. Hello. How you going? I'm good, thank you. How are you? Good. Had a good couple of days? Yeah, no, I've been really good. I just had a quick look` Last time we got together, my notes` But you've got that Google doc. Cos we were gonna start on the ball, eh? We were gonna start with the story of a young girl at the prime, you know, at school` In her prime time. (CHUCKLES) ...going to balls, and then how that ends up badly, and then tracking back to the beginning to show how` how you got to that point and what had gone on before. So that would be good. Ana is one of my mum's best friends, so I've grown up with her throughout my whole life. And at the moment Ana's helping me with writing my book and doing my vlogs and helping me communicate with people and getting my visions and my ideas out to other people. I just didn't wanna go through life not making my mark on the world and not telling my story. Cos I'm like, 'I can't go through all this for nothing and nobody know about it.' So, when we first talked about the book, you always talked about the three voices ` Yeah. Yeah, yeah. your voice being the... I guess I've seen Petra at her absolute worst, when she's been in some really challenging times and having some very invasive treatments, but, um, I've also seen her at her best. Um, and it always strikes me how` um, how resilient she is and how she can be, you know, having some really invasive treatment one day, and how she can be in her high heels walking out of the hospital on her way to a party the next. I think through the process of thinking about the book and also the art therapy, what she's able to capture is how her own coping mechanisms that she's developed over time, she's able to really understand her body and what her body needs and when her body's not feeling well that she needs to stop and look after herself. WHIMSICAL FLUTE MUSIC Hey, Pet. Hello. How are ya? I'm good. How was your day? Yeah, not too bad. Just finished work now. Gonna start dinner up soon. What are you doing for dinner tonight? Um, I think just some chicken kumaras. Nothing too special. Have you thought about Gianni's? I don't know yet. I don't know what we should go as. My brothers are Demetre, which is my oldest brother, and then it's Jonathan, which is the middle ` but we call him Jonny ` and then I'm the baby. They've always taken me under their wing. They've always taken me with them where they go, if they're going to a soccer game or if they're going to the movies. They're really protective of me. They're always watching over me and making sure I'm OK. HAUNTING PIANO MUSIC MACHINE WHIRRS (EXHALES NOISILY) (COUGHS) That's good, darling. Keep going. (EXHALES SHARPLY) I swallowed it. No worries. (COUGHS) I've been in the hospital now for about five days, I think it is. And so I came in, um, cos I just had, like, a regular virus that everyone else basically has in, like, the whole of Wellington right now. Um, but since I can't clear my phlegm, that causes all my breathing problems. So we had to come in. And I used the cough machine, which is over there, and I got some phlegm out, which was the first time I've gotten phlegm out for, like, years. So it was, like, a big achievement for me. Um, so, I've basically been on my CPAP the whole time; I've been on antibiotics; I've been on round-the-clock pain relief and things because I've been stuck in bed for so long I've been getting really sore. Um, I've basically had to stay upright the whole time because every time I lean backwards, my airways start to play up and my gagging starts and, um, yeah, I just can't clear the phlegm and things. So basically, I've been upright now for, like, five days straight, so I'm pretty exhausted. It's sore, like` You're quite tight, actually. Yeah, it's in that bit. That's real sore too. OK, we'll get in there. Getting our heads round this whole new diagnosis and what it actually means and, you know` And again, nobody knows what's gonna happen cos there isn't a lot of information on it. There's not a lot of cases, specially in her age group. It's a bit stuck. Where's it stuck? Just here? I don't know. It just feels tight. You see this young girl who's got so much potential and so much ability to do stuff, and whatever she does, she does it so well. And yet, you know, she just gets held back physically by just fatigue and, you know, pain. Thank you. Every night I try to do the same routine. My body can't do things by itself; it's about doing it physically to make it, 'No, it's time to go to sleep now.' I'll take all my tablets, I'll get into bed, I'll put my CPAP on, and I'll put my music on. So it's like my body has a routine to know it's time to go to sleep now. (INHALES DEEPLY) My CPAP is pushing in air and keeping my tongue in place so I don't bite my tongue when I've got my CPAP on. During the night, I get these uncontrollable clamps. It must send just a wrong communication cos everything's kinda muddled up, and my jaw just clamps. And a lot of the time, my tongue is in the way. So throughout this whole year, I've just been biting my tongue in my sleep. And last week I ended up biting off half my tongue in my sleep where it was, like, a bit hanging off and it was really disgusting. PEACEFUL PIANO MUSIC The more active I am during the day and the more hyped up I get, the longer it takes me to wind down at the end of the day. When I know I'm having a really bad insomnia night, I usually actually get out of bed, and I might go on to my laptop for a bit, I might go read for a bit, I look through my social medias. Because you're just sitting there and you're going, 'Why can't I go to sleep? Body, just go to sleep. 'Why are you up, mind?' Like, you just wind yourself more up when you're lying in bed and you're watching the hours go past. CLICK! Yeah, so, I just feel really emotionally drained this week because of everything that's happened and stuff, so it's just hard to, like, when you're already down, to make yourself feel up, which I always do, and I know I'm only being down because I've been in bed. It's a bit like` And it's coming up to the end of chemo now too, which is kind of like, 'What's our plan for after chemo?' Like, 'What's gonna happen then? Am I gonna still continue to improve or am I gonna, kind of, deteriorate?' So I guess the thought of that's a bit, um, daunting as well. EMOTIONALLY: You have to wait until you, kind of, can start doing things again. It's always a waiting game. You have to just, kind of, wait out. There's nothing you can do when your body, kind of, really just shuts down, so... just have to wait. And then I know I'll get back to where I am, but... (EXHALES) it's just a lot of waiting. (EXHALES) And thinking. Mm. She's a lightweight fighting in a heavyweight division ` and surviving. You know? She's really... She's pretty impressive. GENTLE GUITAR MUSIC I definitely have a lot of down times. I know everyone gets sad, but, you know, it was kind of a big thing to let people see that I do get sad about it. Like, I do always think about how what I'm going through affects other people, and that's why I don't wanna express how bad it is sometimes, because I don't want people to worry or to feel bad or upset anyone. I don't wanna put my weight on to someone else and burden them. As much as we give to her, she gives to us as well, and that's the thing, eh` Yeah. Yeah, yeah. ...she really keeps us going. She did it from really little. Lots of times, she's always said something or done something that gave you that extra little bit of strength to keep going. Yeah, yeah. And in the end, you know, we named her Petra, like a rock. (LAUGHS) Well, it's ironic we did name her Petra, because in Greek it means rock or stone. Like, yeah, she really is our, kind of, base and foundation, eh? Yeah, yeah. Whenever I, kind of, get sad, I don't like to dwell on it, but a thing that I use to help get myself out of it is my angel cards. I don't know if they're perfect for everyone, but this really works for me. This makes me feel good, and I just really love them. It's kind of like a coping mechanism for me, it's a managing thing. It's just something I'm really interested in. Um, and it's also like another support system for me, I guess, because the angel cards always give me the answers I'm looking for or they give me guidance or they give me more knowledge. This reading right now is pretty accurate for me, just because I was just in hospital and I lost a lot of weight, so there's a lot of food ones in here. which is really interesting because I've been knowing I need to eat more. I also need to give myself the vitamins it needs and all the healthy stuff it needs. I take a bit from the medical, bit from the spiritual, bit from the mental, find what works for me, and that's what gets me through and that's what keeps me going and it keeps me sane. (CHUCKLES) Yeah. What you doing? I'm just doing` trying to catch up on my book stuff, cos I haven't done much in the last few days. Oh yeah. I just brought you something to eat. Thank you. Cos, you know, need to keep up with that at the moment. Mm. We did about four or five days in hospital. And the minute she spends quite a bit of time in hospital, she loses weight quite quickly and muscle mass quite fast. So we had a bit of a shock the other day ` she got on the scales and was about 4 or 5 kilos lighter. There's really not much there to lose. CLICK! Tonight we're talking about my last week of chemo. It's been pretty a tough 12 months cos I've always had to be planning around chemo, but now I can stop that cos I'm finally finished chemo. You know, and the best result for me would be if I can get out of this really stuck place that I've been in and, you know, to look forward to my future. Because if I'm not sitting here in bed and feeling yuck, that means I can finish my book and I can do my filming projects and I can plan to do whatever I want to do at any time of the month, you know? So I'm really looking forward to doing that and just, you know, to live my type of normal life, which will be really nice for me just to kind of really step into my own. Tonight the girls are coming over and we're just gonna hang out, have a few drinks and chill out, which will be nice. I haven't seen them for a while cos I've kind of been not too well, so it'll be nice to have a little catch-up and see their faces, cos I always feel a lot better when I see them and actually hear what they're doing. When I'm around them, I just feel better, like I'm actually doing something. It's just I love them all, so it's really fun. Three! LAUGHTER Three, two, one. Cheese! LAUGHTER ALL CHAT 'There's obviously been times where I feel discluded or like I can't relate to them 'because, you know, I'm doing such a different thing to them. You know, they're all working, 'they're all going to uni together, they're all partying together. 'But then they do come visit me here all the time.' Everyone who meets Pet, even if they're not, like, best friends, they, like, love her. Petra's personality is like fire. Like, you know, she'll give it to me. If I need to be told, she will tell me. Or, like, if someone's pissing me off, she will agree with me and more. She'll be like, 'What they're doing is effed.' LAUGHTER Imagine being so restricted that you can't even go and have lunch with your friends. Like, imagine that. Imagine how it would feel. Like, on my birthday, I can't believe that she has to watch our Snap Stories, you know, on Snapchat, watch all of her best friends have fun, and she's in hospital with a, you know, a breathing mask. Like, imagine how she must feel. OVERLAPPING CONVERSATIONS Oh, here we go. (LAUGHS) Who is it? It's DK. ALL EXCLAIM Hey! Go away! What's going on in here? Hey, we're filming a documentary. It's girl time. Come on! None of us are close with our siblings like Petra and Jonny and Demetre. If Pet texts them like, 'I need you to pick me up from a party' at 4 o'clock in the morning or like, 'You need to take me to the hospital,' they will drop everything to take her. It's like, envy their relationships with their siblings. Oh yuss! Food! CHEERING You guys have to stop drinking and start eating now. We haven't drunken anything. 'She's struggling to do the day-to-day stuff, 'and you know, at the end of the day if you can't breathe or sleep or eat properly or chew, it's quite scary.' I just want her to just, like, can go out and she can have a family and have her own kids and this and that. Yeah, of course. But I have to make sure he's all right. Couldn't have anyone. You have to approve, eh. She's gone through so much that she's not gonna throw it away to someone that's not worth it. If I'm feeling yuck right now, I feel yuck. I feel good right now, I'm gonna make the most of it ` I'm gonna go see my friends, I'm gonna get out of the house, I'm gonna get out of this room and go and do what I want. Yeah, so I'm just quite open to whatever life, kind of, throws at me and just accepting it all and just, kinda, moving on when I can. UPBEAT ACOUSTIC GUITAR DOOR SQUEAKS (SPEAKS INDISTINCTLY) MAN: When you're ready. Three, two, whenever. Hi, guys. I'm on the set of my 48-hour film festival scene. This is kind of where the main event takes place. Um, I'm really excited to be directing. It's my first big job in film-making. And I've always really loved doing film-making since I was little, so today's actually my first opportunity to actually do that. It kind of follows his gaze. Yeah. We're gonna actually have to do two throws. (SPEAKS INDISTINCTLY) Just now I'm starting to get a bit tired, so I think it's time for rest. CLICK! Hey, guys. So, today I'll be talking about my good week. So this week I've been doing the 48-hour film festival. It's been amazing. And just a classic example of me is, you know, last week I'd bitten off half my tongue, end up in a hospital not being able to breathe without a breathing machine, not being able to cough, not being able to get my phlegm up. And then this week, it's totally different. I've been directing a movie, I've been filming all day, I've been keeping up with everyone. So it just shows how much of a roller-coaster my life is, how one day to the next can be completely different, how one week to the next can be dramatically different. I hope my body just continues down this road and continues down this path, because I'm really loving being this Petra. I haven't been this Petra in a while. And that's why I'm so open to everything, because who knows what's gonna happen tomorrow. It could be good or it could be bad, but, you know, I'm willing to find out. See you guys next week! Petra wants to answer your questions, so head to our Facebook page and ask away. And to view more of Petra's story, go to attitudelive.com. We love you so much, Petra. LAUGHTER All right, hey, guys, let's look at the camera again. Copyright Able 2016