Welcome to Dear Melanoma’s new home!
For those of you who have been part of my journey with melanoma since the beginning of Dear Melanoma back in June 2014 – thank you. Thank you for being part of such an amazing community, and thank you for being my strength and comfort. To those of you who have recently stumbled across Dear Melanoma – welcome!
My name is Emma Betts. I am 24 and a wife, daughter, sister, crazy dog-lady, lover of pavlova, former international aid and development worker, and current writer/blogger/advocate (who would have thought?!). I also have terminal melanoma.
Before I delve into my life with melanoma and the beginning of Dear Melanoma, I should introduce you to who ‘Emma’ is.
I grew up in Brisbane with my parents and two older sisters, and had an easy upbringing. My sisters and I went to good schools, we were raised in a wonderful and close-knit community and we were given opportunities to thrive and achieve.
My high school years were a struggle. At 12, I was diagnosed with Juvenile Arthritis and struggled with daily pain. I became withdrawn and struggled to make new friends; it was a struggle to even go out with old friends because I was in too much pain. In Year 10, I snapped out of this, found my crowd, and developed a passion for helping others. My particular interest was to educate society about the challenges faced by people in the developing world.
Different leadership positions at school allowed me to delve into this world and learn as much as I could, which sometimes meant challenging my teachers to keep up with my odd assignment topics! However, I hit another hurdle with my health.
During Year 10, I began to struggle with my bowels (stop reading this paragraph now if you are squeamish!). It meant excruciating pain and being unable to go to the toilet. Even though I had every test on my intestines and bum known to mankind, the doctors were stumped – they had no idea what was wrong.
By Year 11 I was having to take litres of laxatives and would frequently end up at the emergency room fearing my intestine would literally explode. I dropped a subject at school due to missing too many lessons and we kept on delaying the inevitable – surgery. Halfway through Year 12, i could not put surgery off any longer and had major surgery to remove my large intestine.
It was life changing.
As scary as it was going into surgery with a huge amount of risks (such as potentially leaving me with a permanent bag, or missing out on the rest of my final year of school), I can honestly say it was the best decision I had ever made!
Please note: I give you permission to call me a dud – I really have not had much luck with my health!
However, the over achiever in me had some big plans. After school, I started volunteering for a youth run aid and development organisation, Oaktree, as a school facilitator. This involved teaching high school students facing young people in developing countries, and teaching them leadership and advocacy skills. I was doing this while studying a Bachelor of Arts in International Relations and Peace and Conflict Studies at the University of Queensland. During this time, I really found my confidence and, almost a year later, moved to managing the schools team at Oaktree. Subsequently, I became the youngest State Director of Oaktree at 18.
My love for travel was born, but not typical travel of a young Aussie. I spent two months in the amazingly beautiful Guatemala working with children with disabilities, and then spent a month travelling around East Timor with Oaktree...and fell in love.
After graduation (literally the night of graduation!) I hopped on a plane and moved to East Timor for a year. I had my dream job working at a rehabilitation centre for people with physical disabilities and it was the biggest challenge I have ever faced.
East Timor wasn’t only challenging on a work front, but it was not an easy place to live – definitely as a 21-year-old woman. I had to learn how to navigate life in a country where I didn’t know the language and didn’t know anyone. I quickly adapted to the expatriate life style and it was so fun – everything you read about.
East Timor changed my life. It was the year I needed to find my feet and gain confidence in myself and my abilities. Although I loved my position at the rehabilitation centre, being surrounded by clinical staff made me realise I wanted to come back home and study Occupational Therapy, and I was accepted into a post graduate degree for when I returned to Brisbane.
It was in East Timor that I had my first encounter with melanoma. While scuba diving, a complete stranger pointed out a mole on my shoulder as I took my wetsuit off. I hadn’t really noticed any change, but I wasn't exactly living in luxury and did not have a mirror to see the spot, let alone notice changes. I was heading home for a holiday a few weeks later, so made an appointment with my General Practitioner (GP) to have the mole removed.
Imagine my surprise when I was asked to go back to the GP for my results; something so out of character for my GP who would normally feel comfortable sharing news over the phone. I was told that the pathology had shown melanoma.
Was I stressed? No, not really, because I honestly didn’t really know what it meant. So off I went to the dermatologist to have a wider excision of the lesion to make sure they had clearance, and to measure the stage of my melanoma. The pathology for this excision was the best we could hope for – the melanoma was only 0.6mm, which is very thin, and they had made clearance.
My lovely dermatologist put her serious hat on and told me the reality of melanoma. The chances this mole would cause any problem in the future was a mere five per cent and I was told to continue being sun smart, definitely on my return to East Timor, and to return every three months to make sure that we had time to catch anymore any pesky little melanomas early.
Back to East Timor I went. Problem solved, or so I thought.
Almost a year later, August 2013, I found a lump under my arm. My dermatologist had prepared me for what to look out for. I knew a lump, definitely so close to my primary melanoma, was reason for concern. I packed up my bags a month early and returned home to Brisbane.
Within a week a biopsy was taken. Although all the signs were there this was again melanoma, nothing prepared me for what the doctor told me – I had Stage 3 Melanoma. Surgery was booked to remove the lymph nodes from under my arm and we started the process of applying for a clinical trial for Stage 3 patients.
Amid all of this, I was falling in love with Serge, my now husband.
Our relationship had only just started when melanoma interrupted. That’s a story in itself. But Serge was in the deep end with me from the beginning. I was at Stage 3, and there were big questions hanging over us – questions most 22 year olds aren’t asking: Will I be able to start university as planned? Will I be able to have children? And the biggest question of all - will I be here in five years?
Based on the pathology of my lymph nodes, I was told I had a 70 percent recurrence rate in the next five years. Wow, that's huge for anyone, but definitely when five years would only take me to 27.
However, while waiting to see if I was eligible for a trial for Stage 3 patients, it was a more recent scan where we met the biggest hurdle yet – secondary lesions were found in my liver.
I had Stage 4 melanoma.
I had terminal cancer.
My 70 percent recurrence rate had changed to now only having a 10-15 percent chance of being here in five years.
I will not be starting university.
I will not have children.
Chances are I won’t be here in five years.
So, what is the logical thing to do? Eat truckloads of sushi and get engaged!
I started on a combination treatment for patients with the BRAF mutation – Trametinib and Debrafeniband I was scheduled for a scan three months later.
I remember the appointment with my oncologist following my scan so well – she quite simply said, ‘it’s not working’. The drug supposed to keep me alive failed miserably. My cancer had spread dramatically and was now affecting most organs and causing pain. I was given six months to live.
My oncologist rushed to get me on a clinical trial that was about to close – this was my last hope. Once again, I had to jump through all of the hoops of gaining access to a trial, including more scans.
In a period of 3 weeks, my cancer had grown dramatically. I was successful in gaining access to the treatment now known as Keytruda, but if it did not work my 6 months had decreased to 3 months.
Serge, my family, and I were told to go live life.
Our wedding was moved forward to March 16, we booked our final family holiday to Hamilton Island, and Serge and I went on a ‘pre wedding honeymoon’ to Bali.
Life was pretty crazy adapting to my new treatment regime, planning a wedding, and planning my death.
As you will quickly learn from my blog, I am not afraid to talk about death and I want to make sure my family know how I want to die. We met with a palliative care team and we planned my death.
Serge and I had an amazing wedding. We have travelled overseas. I have started working one day a week at my favourite little gift shop. We welcomed a baby (puppy), Ralph to our family, we bought a unit, I have raised over $70 000 for the Melanoma Institute Australia, and probably the most liberating addition to my life – this blog.
You can read more about the blog and its beginnings here.
I am writing today, almost two years on from starting the clinical trial, so it has obviously worked. There have been hiccups along the way, but the overall big picture is promising.
There is no cure for Stage 4 melanoma. All I can hope for is time. Time spent with my husband, puppy, family and friends and YOU.