real life

"At 22, I heard the worst news possible. My life changed in an instant."

This post was published on Emma’s blog Dear Melanoma in October 2016. At the time, Emma had to make some serious decisions about palliative care. She also sat down with her oncologist and had an honest conversation about how long she has left, which was estimated to be two to three months if her body continued to decline.

Sadly, Emma passed away on the 8th of April 2017. A year on, we’re sharing her words in honour of the incredible person she was and all she achieved in her 25 years of life.

This was her story.

It is hard to believe that it has been three years since I was told that I had Stage 4 Melanoma – terminal cancer.

Within a few short months I had gone from a young woman, diagnosed a year prior with Stage 1 Melanoma, to a 22-year-old with Stage 3 Melanoma, to finally hearing the worst news possible – I was Stage 4.

I was 22 years old and had already explored and worked in some of the most isolated places in the world and with the most exciting future ahead of me, to a 22-year-old stripped of all my hopes and dreams and left to face my mortality.

Many people have a cancer-versary – I don’t because I honestly don’t remember the day I was told the cancer had spread beyond my lymph nodes. I remember my surgeon calling me to tell me that I had to have a liver biopsy and that would be just before my sister’s wedding on the 4th October, so it must be shortly after that, but everything was a blur.

I remember being told that I was no longer a surgical case and would need to meet with an oncologist. Appointments were quickly made and I found myself sitting at Princess Alexandra Hospital in Brisbane with the woman responsible for keeping me alive to this day.

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Emma and her husband, Serge. Image supplied.

One thing I do remember is what the oncologist said to me as I sat down for my consult – ‘oh, you are so young’. I felt like yelling across the room, ‘no shit, Sherlock!’ This remains one of the most frustrating comments anyone can say to me. I very much realise how young I am and how it makes the whole situation even worse. Anyway, I digress… so my relationship with my oncologist didn’t start well, but I can definitely say now that this first meeting has no reflection on the relationship we now have. I am her number 1 fan and I would like to think I am her favourite patient (at least top 5!)

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Please visit the fundraising page that has been set up for Emma, to help her get the care she needs
I have essentially been on treatment non-stop for three years. This is amazing considering I was told I only had three months. I have been so lucky to have wonderful timing when it comes to accessing treatment on trials or compassionate grounds, which has allowed me to really prolong my options – I owe this to my oncologist.

I have experienced the feelings that come with a treatment not working in the slightest. The feelings that come with a treatment working better than we ever expected. I have felt the bittersweet emotion that comes with the word ‘stable’. I have felt the pain when being knocked down when a treatment, or numerous, stopped working. I have really felt all the bumps on this roller coaster.

I could write a blog about what I have learnt about myself the last three years or what cancer has taught me, but I honestly don’t have much of a list. I don’t have any words of wisdom, nor do I want to celebrate cancer by finding positives or life lessons.

Looking back on the last three years I can say that I am proud of one thing and that is my ability to keep plodding on.

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A few examples:

· I am told that I have Stage 4 Melanoma - Serge and I get engaged.

Emma and Serge on their wedding day. Image via Tanya Love Photography.

· I am told I have 3 months - we move our wedding forward.

· Serge and I travel overseas several times.

· We had a (fur)baby, Ralph.

· We bought our own home.

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· I started working one day a week.

· I started a business, ‘Love, Emma’.

· I have raised over $100 000 for Melanoma Institute Australia.

· I turned my blog into something much bigger than expected and started having my writing published and taking on speaking engagements.

They are some of the big examples, but it is also about the little things. For instance, my ability to pull myself together when we receive bad news and heading straight to Sushi Train for lunch to ensure we don’t wallow in the moment. It is my ability to wake up every morning, whether I feel like it or not, and go to the gym or Pilates. In my mind, the moment I stop exercising is the moment I am too sick.

I must really like 'Hotel Greenslopes' because I keep on finding myself visiting! I have been really well pain wise, but early hours of the morning I woke up with a temperature of 39 and quickly woke up Serge to take me to emergency - when you have cancer, you don't ignore fevers! I simply have a UTI, nothing some antibiotics can't help with. However, my blood tests showed my hemoglobin had dropped again and quite dramatically. I am having two bags of blood and then I can go home. No overnight stay - yay! I definitely don't want to stay the night because my sister and niece surprised my dad for his birthday by flying in last night for a visit. It was also a surprise for mum and I - the pick-me-up we need at the moment. I have already missed out on dads birthday lunch and refuse to miss out on anything else. #dearmelanoma #melanoma #cancer #hospital #family #auntylove

A post shared by Emma Betts (@dear_melanoma) on

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Life will never be the same after being diagnosed with cancer. I never expected that having terminal cancer would last this long – of course, I am so happy I have more time, but it’s so hard. Unbelievably hard.

I am not able to plan for a future like my friends. I am petrified of the day one of my close friends tells me they are having a baby, because I honestly don’t know how I would cope, as selfish as that is.

I am not able to look forward to milestones in my nieces and nephews lives so that I can protect myself from the pain of knowing that I probably would miss out on most.

I am not able to dream of the life I hoped for Serge and I.

If I chose to ‘live in the moment’ and ‘live like any day could be my last’, life would be so totally different. Life would be hard.

I can only feel safe in the present, but choose to live on the wild side and plan that little bit further in to the future.

I choose to live this life with Serge, my family and friends, in the best way I know and that is to just keep on plodding along.