Cancer Of The Throat

click!hello! my name's petra kotrotsos,i'm 19 years old, and i live in wellington, nz. i'm greek, with abig fat greek family, who came in really handy at 6 wheni was diagnosed with a childhoodcancer. i relapsed four times from theages of 6 to 15, so i've now beencancer-free for four years. but i'm now dealing with a newchallenge where my body thinksit has cancer, so it's attacking itself. so ifyou're interested to find out moreabout me and follow me along mygood days and my bad days,

then i'd love to take youalong. see you soon. ethereal music spent a lot of time in thisroom 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 wasgonna get out of this room, i was diagnosed at 18 withparaneoplastic syndrome. so my journey now is all aboutfinding a way how to get out ofthis room and really live my life. on a daily basis now i'm dealingwith paraneoplastic syndrome, and it's been produced in my bodybecause my body thinks it still hascancer.

so it's attacked the brain stem andit's made all the communicationsreally slow, it's made them get muddled up. i'mdealing with having to think aboutwalking and think about eating and thinkabout looking and think aboutbreathing because it's not automatic any more. (exhales sharply) (coughs) so i basically wake up every daygoing, 'what symptom's gonna bemy challenge of the day?' i've always flipped from being 'goodpetra' and being able to keep upwith my friends and being able to do what everyoneelse can do to being an unwellpetra.

so that transition has always,kind of, been in my life of, kind of, flipping fromone petra to the other. petra is, to me, a reallycourageous young person. and, um, i try really hard toreally encourage her to be, like, who she really is. yeah. cos she really— she is reallyeasy-going. the only thing that getsher down is when she gets frustrated coseither she can't do something orshe's not well. or, yeah, if there's something onlike, you know, last weekend she missed out on a really closefriend's birthday, you know?

well, two of them. yeah.yeah. i'm creating a vision board rightnow because i really like tovisualise where i'm going and how i wanna be and how i wannaget there. so this is just basicallyme making it seem more real and giving me something to actuallylook at on a daily basis. so i'm cutting out things andsticking on things that i wantmy future to look like. and gives me something to worktowards, and it's just anotherway for me to get myself there. my whole life is about judging wheremy body's going and trying to workout what it needs. emotive acoustic guitar started when i was 6, when i wasdiagnosed with neuroblastoma.

it was a cancer in my back,and it was about 6cm x 10cm, so it was pretty huge fora little 6-year-old girl. she was, to all purposes, to all ofus, a really fit and healthy littlegirl. she just had a freak little fallwhere she fell off this roundaboutwhile we were in waikanae and, um, started to get quitesore on our way home. and then had quite a lot of troubleduring the night with her breathing and not being able toget comfortable, so i thought, 'oh, she must'vebroken some ribs or something,'so i took her to the doctors. we went for x-rays, and then theysaid to me, 'send those throughurgently.'

and then he kinda indicated thatthey've seen something on the x-ray. and there's, like, thisbig white, shaded piece. george and i were so naive at thetime. we were like, 'oh, wonderwhat this white shading is. 'maybe it's some bruising orsomething.' but obviously, thatwas the mass that they had found. i had the usual chemo, radiation,surgeries as, like, the normal kindof protocol. and then after that, yeah, she wascancer-free for about three and ahalf years. and i remember just at the time,just before it happened again, dropping her off to school andthinking, 'oh, she's looking sogood.' petra kept complainingabout back pain,

and the oncologist thought i'dbetter have another little look into why she's stillhaving some back pain. and then, um, they realisedit had come back. i was 9. i relapsed again. and thenwhen i was 10, i relapsed again. and then when i was 15,i relapsed again. since we'd already done the chemosand the radiation and since itwasn't really working, we decided to do a differentapproach. so we did a spinalreconstruction, where the doctors went in from theback and just took out the wholearea. so we took out a couple of ribs anda couple of, like, vertebras from myspine

and just lifted the whole area outso there was no chance that cancercould go anywhere. so that ended up being successful.so since then, i've beencancer-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 readyto get my licence, hang out withfriends all the time. and i went to the ball andi had such an amazing night, and i woke up the next morning andmy whole world had just changed, youknow? and we at first thought i was justdehydrated, so i went to a & e andi got rehydrated,

but, you know, for months i stillwasn't— i still wasn't good. so now i've been diagnosed withparaneoplastic syndrome causedby 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 ofa walking experiment. instead of having it to fightcancer, i'm having it to trick myantibody that my body has produced to fight the chemo rather thantaking my healthy tissues. in the last year i've been havingchemo once a month, and so it's beenreally hard to plan things because, you know, chemo ends uptaking out three weeks of my month,you know —

the chemo week, which i'mfeeling really yuck about; and then i have the week where mycounts have dropped, which i feeleven more yuck about; and i've got the week where i'mrecovering. so it really takes outthree solid weeks out of my month. i've only got one week to feel goodand to enjoy myself because i'mfeeling good. and then i end up right back atsquare one where i've got chemoagain. at the moment, i'm just surroundingthe antibody with really positivelights and colours. and now, um, you know, once it kindof grows to that, i'm surrounding itwith all my positive colours, like healing and happinessand love to try, you know, get the antibody to just deactivate

and know that it's safe and knowthat it doesn't need to attackany more. a really difficult thing thathappens a lot is since i'm goingthrough so much and i'm getting so overwhelmed andi'm getting really sick, it's anatural instinct to cry. but for me, crying meansa breathing attack. i don't know why. i don't know whatexperience has made my body thinkthat's the way to cry, but when i cry, it basically closesmy whole throat up and i feel like ican't get air in or out. since crying turns into a breathingattack, the art is a way for me toexpress my emotions. click! (sniffles) um... (clears throat)

(exhales) i was, um, watching videoson my hard drive of— um, i used todo these video diaries um, when i went to parties and wheni was out with my friends and havingfun. um, and then i think it just,kind of, reminded me of, um... how i used to be and whati used to do, and... kind of feel a bit stuck on, like,what i can relate to with my friendsover, you know? i don't understand, or i don't gothrough what they go— like, i don'tgo to uni, i don't go to t— i don't go to town, i don'tgo and drink, you know? so it's— that's everything that 90%of the teenagers my age do, or the20-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 timewe got together, my notes— butyou've got that google doc. cos we were gonna starton the ball, eh? we were gonna start with the storyof a young girl at the prime, youknow, at school—

in her prime time. (chuckles)...going to balls, and thenhow that ends up badly, and then tracking back to thebeginning to show how— how yougot 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 throughoutmy whole life. and at the moment ana's helping mewith writing my book and doing myvlogs and helping me communicate withpeople and getting my visions andmy ideas out to other people. i just didn't wanna go through lifenot making my mark on the world andnot telling my story. cos i'm like, 'i can't go throughall this for nothing and nobodyknow about it.' so, when we first talked about thebook, you always talked about thethree voices —

yeah. yeah, yeah.your voice being the... i guess i've seen petraat her absolute worst, when she's been in some reallychallenging times and having somevery invasive treatments, but, um, i've alsoseen her at her best. um, and it always strikes me how—um, how resilient she is and howshe can be, you know, having some really invasivetreatment one day, and howshe can be in her high heels walking out of the hospitalon her way to a party the next. i think through the process ofthinking about the book and alsothe art therapy, what she's able to capture is howher own coping mechanisms thatshe's developed over time,

she's able to really understand herbody and what her body needs and when her body's not feelingwell that she needs to stop andlook after herself. whimsical flute music how are ya?i'm good. how was your day? yeah, not too bad. just finishedwork now. gonna start dinner upsoon. what are you doing fordinner tonight? um, i think just some chickenkumaras. nothing too special. have you thought about gianni's?i don't know yet. i don'tknow what we should go as. my brothers are demetre,which is my oldest brother,

and then it's jonathan, which isthe middle — but we call him jonny —and then i'm the baby. they've always taken me under theirwing. they've always taken me withthem where they go, if they're going toa soccer game or if they're goingto the movies. they're really protective of me.they're always watching over meand making sure i'm ok. haunting piano music machine whirrs (exhales noisily) (coughs)that's good, darling. keep going. i swallowed it.no worries.

i've been in the hospital now forabout five days, i think it is. and so i came in, um, cos i justhad, like, a regular virus thateveryone else basically has in, like, the whole of wellingtonright now. um, but since i can'tclear my phlegm, that causes all my breathingproblems. so we had to come in. and i used the cough machine,which is over there, and i got some phlegm out, which wasthe first time i've gotten phlegmout for, like, years. so it was, like, a bigachievement for me. um, so, i've basically been on mycpap the whole time; i've been onantibiotics; i've been on round-the-clock painrelief and things because i've beenstuck in bed for so long

i've been getting really sore. um,i've basically had to stay uprightthe whole time because every time i lean backwards,my airways start to play up and mygagging starts and, um, yeah, i just can'tclear the phlegm and things. so basically, i've been upright nowfor, like, five days straight, soi'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 wholenew diagnosis and what it actuallymeans and, you know— and again, nobody knows what's gonnahappen cos there isn't a lot ofinformation 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 somuch potential and so much abilityto do stuff, and whatever she does,she does it so well. and yet, you know, she just getsheld back physically by just fatigueand, you know, pain. thank you. every night i try to do the sameroutine. my body can't do thingsby itself; it's about doing it physically tomake it, 'no, it's time to go tosleep now.' i'll take all my tablets, i'll getinto bed, i'll put my cpap on,

and i'll put my music on. so it'slike my body has a routine to knowit's time to go to sleep now. (inhales deeply) my cpap is pushing in air andkeeping my tongue in place so i don't bite my tonguewhen i've got my cpap on. during the night, i get theseuncontrollable clamps. it must send just a wrongcommunication cos everything'skinda muddled up, and my jaw just clamps. and a lot ofthe time, my tongue is in the way. so throughout this whole year,i've just been biting my tonguein my sleep. and last week i ended up biting offhalf my tongue in my sleep where itwas, like,

a bit hanging off and itwas really disgusting. peaceful piano music the more active i am during the dayand the more hyped up i get, the longer it takes me to winddown at the end of the day. when i know i'm having a really badinsomnia night, i usually actuallyget out of bed, and i might go on to my laptop fora bit, i might go read for a bit,i look through my social medias. because you're just sitting thereand you're going, 'why can't i goto sleep? body, just go to sleep. 'why are you up, mind?' like,you just wind yourself more up when you're lying in bed andyou're watching the hours go past.

click!yeah, so, i just feel reallyemotionally drained this week because of everything that'shappened and stuff, so it'sjust hard to, like, when you're already down, to makeyourself feel up, which i always do, and i know i'm only being downbecause i've been in bed. it's a bit like— and it's coming upto the end of chemo now too, which is kind of like, 'what'sour plan for after chemo?' like, 'what's gonna happen then? ami gonna still continue to improve oram i gonna, kind of, deteriorate?' so i guess the thought of that'sa bit, um, daunting as well. emotionally: you have to wait untilyou, kind of, can start doing thingsagain. it's always a waiting game.

you have to just, kind of, wait out. there's nothing you can do when yourbody, kind of, really just shutsdown, so... just have to wait. and then i knowi'll get back to where i am, but... (exhales) it's justa lot of waiting. (exhales) and thinking. mm. she's a lightweight fightingin a heavyweight division —and surviving. you know? she's really...she's pretty impressive. gentle guitar music

i definitely have a lotof down times. i know everyone gets sad, but, youknow, it was kind of a big thing to let people see that ido get sad about it. like, i do always think about howwhat i'm going through affects otherpeople, and that's why i don't wanna expresshow bad it is sometimes, because idon't want people to worry or to feel bad or upset anyone.i don't wanna put my weight onto someone else and burden them. as much as we give to her, she givesto 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 saidsomething or done something

that gave you that extra littlebit of strength to keep going.yeah, yeah. and in the end, you know, we namedher petra, like a rock. (laughs) well, it's ironic we did name herpetra, because in greek it meansrock 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 getmyself out of it is my angel cards. i don't know if they're perfect foreveryone, but this really works forme. this makes me feel good, andi just really love them. it's kind of like a coping mechanismfor me, it's a managing thing.

it's just something i'mreally interested in. um, and it's also like anothersupport system for me, i guess, because the angel cards always giveme the answers i'm looking for or they give me guidance orthey give me more knowledge. this reading right now ispretty accurate for me, just because i was just in hospitaland i lost a lot of weight, so there's a lot offood ones in here. which is really interesting becausei've been knowing i need to eatmore. i also need to give myself thevitamins it needs and all thehealthy stuff it needs.

i take a bit from the medical, bitfrom the spiritual, bit from themental, find what works for me, and that'swhat gets me through and that's whatkeeps me going and it keeps me sane.(chuckles) yeah. what you doing?i'm just doing— trying tocatch up on my book stuff, cos i haven't done muchin the last few days. oh yeah. i just broughtyou something to eat.thank you. cos, you know, need to keep upwith that at the moment.mm. we did about four or fivedays in hospital. and the minute she spends quite abit of time in hospital, she losesweight quite quickly

and muscle mass quite fast. so wehad a bit of a shock the other day — she got on the scales and wasabout 4 or 5 kilos lighter. there's really not muchthere to lose. click!tonight we're talking aboutmy last week of chemo. it's been pretty a tough 12 monthscos i've always had to be planningaround chemo, but now i can stop that cosi'm finally finished chemo. you know, and the best result for mewould be if i can get out of thisreally stuck place that i've been in and, you know, to look forward to myfuture. because if i'm not sittinghere in bed and feeling yuck, that means i can finish my book andi can do my filming projects and ican plan to do whatever i want to do

at any time of the month, you know?so i'm really looking forward todoing that and just, you know, to live my typeof normal life, which will be reallynice for me just to kind of reallystep into my own. tonight the girls are coming overand we're just gonna hang out, havea few drinks and chill out, which will be nice. i haven't seenthem for a while cos i've kind ofbeen not too well, so it'll be nice to have a littlecatch-up and see their faces, cosi always feel a lot better when i see them and actuallyhear what they're doing. when i'm around them, i just feelbetter, like i'm actually doingsomething. 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 wherei feel discluded or like i can'trelate to them 'because, you know, i'm doing such adifferent 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 visitme here all the time.' everyone who meets pet, even ifthey're not, like, best friends,they, like, love her.

petra's personality is like fire.like, you know, she'll give it tome. if i need to be told, she will tellme. or, like, if someone's pissingme off, she will agree with me and more. she'll be like,'what they're doing is effed.'laughter imagine being so restricted that youcan't even go and have lunch withyour friends. like, imagine that. imaginehow it would feel. like, on my birthday, i can'tbelieve that she has to watchour snap stories, you know, on snapchat, watch allof 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 oursiblings like petra and jonnyand demetre. if pet texts them like, 'i need youto pick me up from a party' at 4o'clock in the morning or like, 'you need to take me to thehospital,' they will drop everythingto take her. it's like, envy their relationshipswith their siblings. oh yuss! food!

cheering you guys have to stop drinkingand start eating now.we haven't drunken anything. 'she's struggling to dothe day-to-day stuff, 'and you know, at the end of the dayif you can't breathe or sleep or eatproperly or chew, it's quite scary.' i just want her to just, like, cango out and she can have a family andhave her own kids and this and that. yeah, of course. but i have tomake sure he's all right. couldn't have anyone.you have to approve, eh. she's gone through so much thatshe's not gonna throw it awayto someone that's not worth it. if i'm feeling yuck right now, ifeel yuck. i feel good right now,i'm gonna make the most of it —

i'm gonna go see my friends, i'mgonna get out of the house, i'mgonna get out of this room and go and do what i want. yeah,so i'm just quite open to whateverlife, 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 my48-hour film festival scene.

this is kind of where themain event takes place. um, i'm really excited to bedirecting. it's my first bigjob in film-making. and i've always really loved doingfilm-making since i was little, so today's actually my firstopportunity to actually do that. it kind of follows his gaze.yeah. we're gonna actuallyhave to do two throws. just now i'm starting to get a bittired, so i think it's time forrest. click!hey, guys. so, today i'll betalking about my good week. so this week i've been doing the48-hour film festival. it's beenamazing.

and just a classic example of me is,you know, last week i'd bitten offhalf my tongue, end up in a hospital not being ableto breathe without a breathingmachine, not being able to cough, not being able to get my phlegm up.and then this week, it's totallydifferent. i've been directing a movie, i'vebeen filming all day, i've beenkeeping up with everyone. so it just shows how much of aroller-coaster my life is, how one day to the next canbe completely different, how one week to the next canbe dramatically different. i hope my body just continues downthis road and continues down thispath, because i'm really loving being thispetra. i haven't been this petra ina while.

and that's why i'm so open toeverything, because who knowswhat's gonna happen tomorrow. it could be good or it could be bad,but, you know, i'm willing to findout. see you guys next week! petra wants to answeryour questions, so head to our facebookpage 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'slook at the camera again.