Dear Melanoma: How one mole changed Emma Betts’ life | Australian Story

[Music] hello I'm Sara wills and I host a national radio show what you're about to see is an extraordinary young friend of mine dealing with the unthinkable Emma Betts was 21 when a stranger suggested she have a mole on her shoulder checked after a shocking diagnosis Emma started her own campaign desperate to warn others about the biggest cancer killer of her generation [Music] the people that we met the team arrays people and I'm in the nation people here in West table they're the most amazing people [Music] when I was at a stable literally that I graduated my passion was at in development work but specifically working with people with disabilities you could see the spark is actually the social conscious she was heading for a career as an aid worker M I really loved scuba diving and it was in fact when she was getting into a wetsuit and his team or that somebody did to her he's seen this mole in your back it looks a bit suspect it was sent down to the mill and over is true in Sydney this is a very difficult and unusual case although Emma was a young patient it's not uncommon for young people to get melanoma in fact melanoma is the commonest cause of cancer and 15 to 39 year olds and in fact is the commonest cause of cancer death in young adults in our country if Emma story doesn't actually make you go and have a skin check then I'm not sure what we'll have one mole can change your life [Music] [Laughter] [Music] and I had a mole removed and returned to East Timor it was less than a millimeter deep or thickness so yes we just thought that okay you know this this this is the end of it as much as I loved it over there I had been accepted to university to do an accelerated program and I was already I was excited the plan would be that I've been off passional therapist and it was all bored until about a year later and she felt a lump underneath her arm [Music] at that point and they flew her back to Brisbane and then it was confirmed that it was melanoma and in the lymph nodes she went off to have the treatment and was going through a routine scan when they actually found melanoma in her liver [Music] within three months I went from being just my liver to being my pancreas lungs Petrino gland spine pretty much everywhere you could think of awesome patients gonna be a boss once they finish their treatment I see a lot of patients who go why me why is this happening to me Emma never did that when she was with me she was this is my lot and this is what I have to deal with it just takes one melanoma cell to get into the bloodstream or the lymphatic stream and it has the ability to sprint I asked about effects on my fertility as she I love my doctor she's very blunt but she's amazing she essentially said to me you don't need to worry about that because you're not it's not gonna be possible yeah you're not gonna be a lot of to have children so Emma was 22 she had a terminal disease and we were just wondering how we ever got to this point Emma grew up in Brisbane and she was the youngest of our three daughters very strong moved quite a purify maintenance I make no but Emma's high maintenance and we've a red hair blue eyes fair skin she was always going to be a target for melanoma so we were careful out with the kids she obviously did have bouts of a bit of sunburn we always did the hats and and sunscreen Emma had some health issues in year seven she was diagnosed with three active juvenile arthritis she then had in high school her large intestine removed because she had problems there so he always used to actually laugh that she was the bit of the judge all these health issues that she did have really shaped her into the person that she became she didn't lie down on the couch and do nothing with her life she got through it went to uni when overseas volunteered [Music] she had direction it was all about helping others we actually knew very little about melanoma didn't realise it was the most deadly skin cancer that you can get the time between the stage 3 and stage 4 is a complete blur I really don't remember much of it Serge and I had literally just started officially dating we met when Shane brother-in-law he said come over on Friday afternoon and they'll be some pizza and beer and there might be a redhead there too for me it was a bit of love at first sight those feelings only grew stronger [Music] our first dates were really in hospital I'm having surgery with drains under my arm it's very attractive she had sent a surge of God a massive journey ahead go now jump ship and search just said no I'm in it for the long run wasn't out of pity it wasn't about it was just like hey this is what I generally want to be with this person I asked her to marry me because I felt like if she didn't have the cancer that's the road that we would go down Emma was one of the six percent of people who didn't respond to targeted therapy and it was very clear the treatment wasn't working and I suggested that she bring her wedding forward the doctor said you could have was leading was three months bang yeah that kind of hits home she couldn't go back to East Timor she thought what am I going to do with my time in 2014 I found this babysitter called Emma and she sounded like a mixture between Angelina Jolie and Mary Poppins because she'd been an aid worker in East Timor and she'd been had all this babysitting experience on the day that she was meant to come she sent me a text message and said oh I can't make us I've got a doctor's appointment and I'll be honest I thought oh here we go you know another Gen Y person who's cancelling it and then she texts me and said I'll come tomorrow she went to Beck's house and head back and met the kids she must have had a really good feeling about Beck and that all of a sudden she says to me I've got to tell you I've just been told by a doctor yesterday that I have Stage four melanoma and she said it's terminal and then she cried and I cried and and a friendship suddenly started back suggested that Emma could use her time to put some of her thoughts down onto paper I said however you do it whether it's in a journal or online I want you to start writing about this experience and who knew what would happen from there I wrote a list about what not to say to someone with cancer which is all the you know it's in God's will or drink a green smoothie all those fun things Emma's blog was called dear melanoma and it was really her writing about the highs and lows and the rollercoaster of living life with Stage four melanoma I often sit at the computer crying when I'm writing a blog because that's I'm being brutally honest but once I get in feedback it's just lifts you up and then it just exploded she just attracted readers to her like I have never seen she wrote from the heart and she wrote some things about jealousy and anger after bad stop at our braithwaite's on thank goodness but I'm on the side of the road having an emotional breakdown on her way to my mum's have a bath he was this young woman who was willing to be real and authentic and vulnerable I openly talk about death on my blog and I think it really has become something I'm passionate about because no one talks about their people so it tough to go and I have to juggle that on a daily basis so you know I work sure to get married in May and we made the decision that we had to move wedding forward or I wouldn't it might not be there my sisters and my four best friends from high school you made what could have been a really difficult time and a really amazing past six months Sophie loved doing hot stuff in the wedding vows people say things like you know till death do you part and she didn't want any of those words in there because that was in imminent for her so she didn't want it to be glaringly obvious [Music] [Applause] I don't want to have a pity party I don't want to sit and talk about all the reasons why my life is unfair because yes it is unfair it's [ __ ] that I have terminal cancer at my age but it is what it is now she was particular about the day and how she wanted people to be don't you cry let's not focus on the fact that I'm dying let's focus on the fact that I'm a girl in a pretty dress [Music] we're basically preparing for her to die at that stage and then the trial came along five five seven sevens reach she got accepted into the trial and the trial changed everything Emma was able to get on a clinical trial of immunotherapy this is a type of therapy that basically brie boots the immune system to enabled the immune cells to be able to recognize the melon lime ourselves and do their job and kill them off the response was pretty quick tumors were actually reducing in size shrinking and some of them had actually gone away some patients were now now being cured through the use of immunotherapy five years before a misdiagnosis there were very limited options with melanoma and now we have people that have had Stage four melanoma and are now free of disease that's a huge jump in in ten years I'm so grateful that I got on that trial yes knowing that I wouldn't be here it wasn't even if this bought her time so Emma traveled the world she got a puppy which grew into a dog she and her husband Serge spent time together Rafi it's not time yet we always knew that based on the data from the trials that it was going to extend her life but it wasn't going to a cure so we have tried living for the moment in the moment that didn't work well it's fun we got fat and we had a lovely time and it just got a little bit tired she kind of got bored of sitting around for after a while waiting to die so she decided to get on to the next phase of a life [Music] she participated in the melanoma issue Australia's melanoma March and she ended up being the top fundraiser in Australia I think that was really the spark was saying hey you know I can make a difference [Music] my remarks are only larger the confidence of me but a purpose to raise money for research Emma was very articulate composed and generous I mean she if she couldn't change her own future she wanted to change the future for others [Music] she knew pretty early in the piece that she wasn't actually raising money for trials to save her life she knew she was raising money to save other people's lives you can join my team so I think she raised something like over a hundred thousand dollars over about three years this is the trip you make every three weeks yeah she was on the news she was on talk shows she's speaking at schools she was so out there Emma Betts is 23 years old and although she looks like a healthy and fit bride she's fighting advanced melanoma I think it gets through to the young people you know this could be me you know I could be the one that has this spot on my shoulder that is now you know terminally ill [Music] her other big passion was teaching people to go and get their skin checked because if you get it detected early your chances of survival are really high I have this feel set to be able to go to schools and educate people and facilitate because that's what I used to do so I've just changed from ADA development work to cancer and I feel like I'm driven by it and I'm good at what I'm doing it's pretty much and every major organ of my body now but I've been lucky enough to be part of a clinical trial that has kept me here here is this girl in her early 20s who's handed this you know awful health diagnosis and yet because of us I think she blossomed into who she was meant to be in the strangest way she fulfilled this potential because of that diagnosis I think which was both heartbreaking and extraordinary [Music] it gave us a glimpse of what she had to offer the world [Music] Emil's on the katrina trial for two years when it stopped working i guess you think is this the start oshi downward spiral because there will be a starting point I accept the fact that I'm gonna die from this and if you're part of my circle and you're not acknowledging that just be quiet so we acknowledge the death part of it I think Emma and search were this extraordinary love story he was just by her side as her greatest supporter and her soft place to fall I'm bossy definitely she's bossy Maggie yep thought it's really good when your partner knows what she wants and she fought for yeah we have fun we have fun so I think I think we're only 26 there will be a point where he'll meet someone and uh I hope you meet someone I hope he has children as a how does that use but I also hope that his children will know who and he has to tell them till I yet weak Jake alike like we talked about what will happen like you know moving on like when he is ready to date again I say that I'm going to glue all of our photos of we'll all of our photos to the wall so that it's a permanent shrine to me so that no one will ever be feel welcome in that house I would say observe this man and how he loves this woman because that's how every girl deserves to be loved today I received my scam results and the news wasn't great there is no getting around the fact that I'm slowly not responding to the treatment that has been keeping me alive for over two years I found myself almost groveling to my oncologist for more options unfortunately as 2017 progressed it became clear that Emma's disease was going to catch up with her and that she wasn't going to survive this illness on the 12th of March Emma went into hospital early hours of the morning it was the day of the melanoma March and we all did the March that's what she wanted us to do Emma organized her own funeral she said I want lots of photos I want to be about my life I want people to laugh but I do want them to cry we came up with the fun oral so if you win - or all and so all our emails in between us family members was Emma's funner all I had what my family to know what I had walked I wanted to be production people to sit there and talk about me for like an hour and out of this quick fast funeral I wanted to be happy but also obviously it's gonna be sad and I want the music I choose and I don't want my Eli fat photos in there [Music] it was like times of you know sadness there but mostly times of happiness I remember we had a champagne at about nine o'clock in the morning with some scones and cream and jam and laughs with her friends Emer and Serge spent their third year anniversary in hospital and the staff that green soaps organized a pastry chef to make a cake am I hated all the sadness in the room so if you were losing you know losing it you go out the hardest part of all of Emma's illness or of Emma dying was the last couple of weeks and that was just love a life that was dollars horrible it was difficult because you love someone and you want to be with them but at the same time it's time for them to go to stop suffering you know so when she did pass he was a big relief a Queensland blogger has been laid to rest after passing away on April 8 Emma bets their creator of dear melanoma lost her battle with cancer at the age of 25 it was the best funeral I have ever been to because it was a celebration of her life and it was full of laughter and of course it had to end with her favorite song which was horses by Daryl Braithwaite I look back on that day that that girl walked into my house to be my babysitter and how lucky was I there was lots of people that would actually write to Emma and say yeah because of you I've gone off and got a skinship and a few of those was because you I've gone off and got a skin check n they found a melanoma but here bracing I discovered Emma's blog through a friend who knew Emma and I started following on Facebook got another fly breaking in there so a project manager that of course involves a lot of site work outdoors I noticed a new mole at the start of 2017 I was a bit suspicious that it was still changing but I had my yearly skin check booked in towards the end of the year and I thought I'll just wait for that it was in April when I saw Emma's post from her family of her passing it hit home I needed to book this skin check and I just couldn't wait any longer when the doctors called me to tell me it was a level 2 melanoma I was so lucky that I got in time that's all Emma wanted was to change even if she could change one person's life in one person's outcome jobs done even though I've never met her she she was the one that made me go and get this skin check she was the one that saved me I think we're doing okay as a as a family that's been you know it's it's been traumatic [Music] it is tough because like Tamron Lyon have each other and ancestors have husbands and I just come home to an empty house and sometimes it's okay but other times I want to be around people melanoma has become you know it's our life and while we're continuing in this legacy melanoma will always be a lie [Music] tamra and Leon are doing an incredible job I think at a time when you could forgive them for just wanting to stay in bed and you know to hide out at home and to grieve they have taken on the work that Emma was doing and just run with it [Music] we can sit there and talk about Sun cancer and cancer awareness and skin checks a lot but to actually hear a story someone like Emma to kind of drive home that this is real Sun safety and fashion aren't mutually exclusive and we're talking I was talking to a whole heap of Emma's and I think what hopefully that telling her story actually helped drive home the message of how important it actually is a person dies from melanoma every five hours in Australia I think Emma's story tells us that young people aren't bulletproof a lot of people think that melanomas and old people's these young people need to be aware about how their sun exposure and what they're doing now impacts on their future all it takes is one bursts of intense intermittent exposure to UV leading to sunburn particularly before puberty to greatly increase your risk of melanoma Emel she was very vocal about yeah that we had to mourn her loss forever in a day but she she'd want us to get on with it [Music] the melanoma March will continue and we will be there because my quintanilla and we need to find a cure for this horrible disease the whole family is marching to honor em up the display died [Music] on this day I feel the love from everybody all feel that community spirit in everybody and that really that's a massive pick-me-up I hope that on part of anakata conversation I heard that people don't feel same I never want to make a bigger than she was you know she was a young girl that had changed a lot in 25 years so yeah we hopefully we can stay true to that you

Channel: ABC News In-depth

Views: 399,151

Rating: 4.8498526 out of 5

Keywords: Australia, melanoma, cancer, Emma Betts, Australian Story, sun, UV rays, sun screen, mole, health, skin cancer, melanoma research, skin, skin check, ABC News, ABC, Australian Broadcasting Corporation, skin cancer check, skin cancer Australia, melanoma stage 4

Id: FSCPRGFlSFY

Length: 28min 40sec (1720 seconds)

Published: Mon Apr 16 2018

Reddit Comments

[u/dyso1]

It has changed my life, sadly mine is terminal.