EMMA BETTS, Living with stage 4 Melanoma

EMMA BETTS, Living with stage 4 Melanoma

When I met Emma at our photo-shoot, fair skinned, blue-eyed with stunning red hair, I thought ‘well here’s the perfect contrast to me, it’s easy to see why Melanoma Institute Australia paired us together for this campaign’. I spoke to camera first, about my connection to melanoma; A lifetime of fun in the sun as a competitive surfer through my teenage years and the moles that I have had cut out in return of my love for an outdoors lifestyle (all moles returned benign, but I continue to get regular skin checks all the same). Emma spoke next and everything became a bit of a blur after she opened with ‘I have terminal melanoma’. First was disbelief, ‘but you look so healthy and happy… and we’ve just been laughing together all morning, making jokes about our husbands and the awkwardness of posing for photos’. As Emma’s words flowed, I was reminded exactly why I started Lunch with Liz. To have that avenue to share the stories of ‘people of interest’! Emma’s successful blog, Dear melanoma, is an authentic glimpse into the roller coaster that is life with Stage 4 melanoma – the highs, the lows and the in-between. Lunch with Liz caught up with Emma at Darling & Co, Paddington’s newest venue, to share more of what is possibly one of the greatest love stories I’ve heard.

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WHERE WE WENT: Darling & Co, Paddington, Brisbane.
WHAT WE ATE: Noosa Spanner Crab, Watermelon, Beatle Leaf, Hibiscus, Lemon $19. Summer Vegetables, Charred onion, labneh & nasturtium $16. Cone Bay Barramundi, Cloudy Bay diamond clams, baby peas, fennel, butter sauce $34. Hand rolled potato gnocchi, peas, oyster mushroom, truffle mascarpone $23. Raspberry and Coconut Bombe Alaska $14.
WHAT WE SIPPED: The Garden Club, Tanqueray Gin, St. Germain Elderflower Liqeur, rosemary $16. My Darling Cobbler, Ketel One Vodka, Fino Sherry, Strawberry $16.
WHAT EMMA WORE: Dress Sheike and Co, Shoes The Iconic.
WHAT LIZ WORE: Portmans.

Share with me again the story of your diagnosis?
“After school I went on to study International Relations and Peace and Conflict studies. I wanted to work in Aid and Development. I traveled to East Timor after university and a month turned into a year. It’s such a new nation, so under-developed, so fresh out of conflict, that even the children there have experienced a need for aid. I loved the expat lifestyle, it was a bit wild, I scuba dived a lot, met great friends. I was 21 when I went over and I was the youngest by far working there and it made me find myself. It was hard work, but I loved it. A month into my time there I was scuba diving and I was taking my wetsuit off and a complete stranger pointed out a mole on the back of my left shoulder and I agreed it looked a little weird. As I was due to go home for a holiday I had it checked and removed while in Brisbane and it came back that it was Stage 1 melanoma. It was extremely thin so I was very lucky, they cut it out and the success rate of having a primary taken out was 95%. So I really wasn’t worried. I was under strict instructions to have my skin checked every three months, because the main problem would be a new melanoma developing. Then almost a year on, I found a lump under my left arm and straight away I was like ‘oh no’, so I scrambled all my stuff together, flew home, had biopsies taken and found out that it was melanoma and stage 3 at that point. I was in that 5% where something did spread. It’s not that I did anything wrong, or the doctors missed anything; it’s just what happened. So I had it and all the lymph nodes from my underarm removed and we were confident that it was just stage 3, but with a 70% chance things could develop further. There was a clinical trial for stage 3 patients to halt the spread, to gain access to this trial I had to have further scans, to prove the cancer had not spread and unfortunately the scans came back showing that I had lesions in my liver, so this was all within a month. I thought I was all good, but there were some sneaky ones in my liver and at that point I was stage 4, which is a terminal diagnosis with a 10% chance I’ll be here in five years time. I started on a trial treatment (which is why I am such a big believer in donating to medical research) because with this new treatment doctors were seeing their patients making it to two years. At my three months scans it was clear that this treatment did not work for me. The cancer had spread through most of my major organs. I had dozens of tumors; I was given three months to live. I was incredibly lucky when I became my doctors last patient to be added to another new clinical trial, so if I’d been one patient later or we’d found out a week later, I simply wouldn’t be here! I now have five active tumours, but in the last few months we have seen that the treatment is starting to not work and the lesions are growing very slowly. I don’t look like a person with terminal cancer nor do I feel like I am dying. I pretty much live a normal life, go to the gym, do pilates. Unfortunately due to the Clinical Trial rules, we expect that I will be removed from the trail in the next week because of the growth in my lesions. I will be placed back on the treatment that did not work for me the first time round and I hope for the best. That’s the thing with advanced melanomas, there really aren’t many options.”

And then you got married?
“So I met Serge on one of my trips home from East Timor and when I went back he actually hacked on to my brother-in-law’s Facebook (as he wasn’t on social media) to get in contact with me and we continued talking for a few months after I’d gone back! It became a given, that we would end up together when I returned. Within a week of being back in Brisbane, and starting our relationship, I was diagnosed with Stage 3 melanoma. It was a scary time, but I remember feeling super excited about the beginning of our relationship. Our first dates were in hospital. After my surgery, he’d hang around for me and cheer me up. Starting your relationship with a cancer diagnosis really throws you in the deep end! When he proposed, lots of people questioned his motives, like are you just giving a dying girl her wish, but you know what, we knew. It was going to happen. It was real. We were to be married in May but I got the three months prognosis and we had to move it forward to March and rush it. I’m still here. It’s pretty amazing! We grew a lot faster as a couple, we’ve been married 18 months and he’s everything to me, he makes me laugh, he really is the best thing.”

What’s your pick me up when you’re feeling flat?
“Well Serge is! Haha. I remember one day we were at my parents’ house and Serge and I were mucking around to music, laughing and my Grandma (who was on the phone to my mum) said “isn’t she supposed to be sad?” So he really does make me happy! Also, I hate the traditional bucket list. Everyone has the same things on it, like ‘let’s feed a tiger’. I mean I totally would if I could, but my idea of a bucket list was to travel the world, visit countries like East Timor, have children etc – all things that had been taken away from me since being sick … so I made my own version of a bucketlist which is achievable and it’s for everyday fun things! So, if pavalova is on a menu, I have to eat it, even if I don’t feel like dessert. There always has to be champagne in our fridge, fresh flowers at home, I have to drink tea out of a nice tea cup, I have to always get my nails done, so just little things that make your everyday life fun that you wouldn’t normally do, or you’d avoid because you’d be worried they weren’t important enough, or too expensive, the things you’d put off.”

Do you believe it is possible to find a cure for melanoma?
“I don’t like the word cure. I think Stage 4 cancer, whether it’s melanoma or another form of cancer, the reality is that it’s spread throughout your body. I try to focus more… and I hope… for longevity. So if I could live with melanoma for ten years plus, then that’s what I’d want. Cure puts a lot of pressure on me, but gosh I hope that I can have years. That’s my way of looking at it”.

Do you have faith that fundraising for medical research goes directly into finding new treatment options?
“Traditional chemo doesn’t work for melanoma at all, but doctors have been making medical discoveries that they compare to the discovery of Penicillin. It is an exciting time for melanoma. This research is actually changing the face of many cancers. Over the last year I’ve raised over $70,000 dollars for Melanoma Institute Australia and that money has gone towards medical research. People in my position need more options and medical research is how we get them. People are dying waiting for a drug. Selfishly I want more money directed to research so that I have options and can jump from treatment to treatment and stay here.”

Just how hard is it to write about the lows on your blog Dear Melanoma?
“When I started the blog I started it because there was not many people out there talking about the shit side of cancer and the honest side of cancer and I really wanted to talk about things that others would read and think ‘oh I totally get what you’re saying’ and yes, it is hard, I often sit in front of the computer crying, writing it, but then once I publish it, people say ‘I feel the same way’. It’s the beautiful comments that pick you up. I think that’s why the blog has been successful because it’s so honest and genuine. One of the most popular blogs is the blog about leaving Serge as a widow. Now obviously I want Serge to move on when I’m not here and have children and all that kind of stuff, but then you know what… there’s part of me that wants him to cry in a corner wearing black and all that kind of stuff, ‘morn me for the rest of your life Serge’! Haha. No one ever says that! The blog is my therapy and it’s become so much bigger than what I ever expected or imagined. It’s had over 260,000 views. They’re a beautiful supportive community. It’s given me purpose.”

What do you reflect on as the highlight of your life?
“I am so lucky that I can look back and say I’ve done so much for a 24 year old. I’ve lived overseas, I’ve found my true love, and I’ve achieved work goals. If I can find that miracle treatment and get years and years out of this, my life has changed in that I don’t think I could go back to aid and development. My new purpose is cancer and melanoma’s specifically and that’s exciting. I’ve found why I’m here. I’m using skills that I already had, but now for a new purpose.”

Kara’s Question. *note to reader Kara is my adult best friend (not a child) who gets to ask each week’s celebrity one question.  What’s your favourite thing to have for breakfast?
“Breakfast is my favourite meal!! Hash browns are my guilty pleasure.”

With eleven and a half thousand diagnosed cases and fifteen hundred deaths each year, melanoma IS Australia’s national cancer.
That’s why I’m working with Melanoma Institute Australia to help raise awareness of this terrible disease.
Melanoma March is a fun community event for the whole family.
Please join me as we march to raise vital funds for melanoma research, celebrate survivors, and remember loved ones.
Jump online and visit melanomamarch.org.au to register today!
The Garden Club, Tanqueray Gin, St. Germain Elderflower Liqeur, rosemary

The Garden Club, Tanqueray Gin, St. Germain Elderflower Liqeur, rosemary

Noosa Spanner Crab, Watermelon, Beatle Leaf, Hibiscus, Lemon

Noosa Spanner Crab, Watermelon, Beatle Leaf, Hibiscus, Lemon

My Darling Cobbler, Ketel One Vodka, Fino Sherry, Strawberry

My Darling Cobbler, Ketel One Vodka, Fino Sherry, Strawberry

Summer Vegetables, Charred onion, labneh & nasturtium

Summer Vegetables, Charred onion, labneh & nasturtium

Cone Bay Barramundi, Cloudy Bay diamond clams, baby peas, fennel, butter sauce

Cone Bay Barramundi, Cloudy Bay diamond clams, baby peas, fennel, butter sauce

Hand rolled potato gnocchi, peas, oyster mushroom, truffle mascarpone

Hand rolled potato gnocchi, peas, oyster mushroom, truffle mascarpone

Raspberry and Coconut Bombe Alaska

Raspberry and Coconut Bombe Alaska

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5 Comments

  1. What a great read

  2. Loved your post with Emma Betts. So informative. I had a stage 1 melanoma removed a few years ago and it’s always in the back of my mind something could change there. So this was a good reminder for me to keep on brig vigilant and nagging my loved ones to go and have their checks. I also had some tears reading this. What s gorgeous young lady. Xo

  3. Great piece Liz, very inspirational. Thanks to you and Emma for spreading awareness of melanoma! x

  4. Great read liz well done

  5. I lost my Dad at the age of 45 to melanoma, my grandma survived it despite being t to go home and enjoy every sunset.
    I walk a fine line every day from scaring the life out if my kids to ensure they stay safe.
    I pray for Emma – what an inspiration.