By Emma Betts
1 December 2014
Emma Betts was just 25 years old when she passed away in April 2017. She shared her melanoma journey on her blog, Dear Melanoma, and was a fierce advocate for melanoma research and treatment. She shared her story with us many times, and we are so grateful for Emma and her voice.
“These drugs will buy me time, and time is everything to me.”
In August 2013, 22-year-old Emma’s life was on track. Coming to the end of a year volunteering in Timor, Emma was about to start a Masters in Occupational Therapy and was coming home to an exciting new relationship.
But then her world came tumbling down.
While still in Timor, Emma found a lump under her left arm. Alarm bells went off straight away, as a year prior she’d had a melanoma removed from her left shoulder. She saw the embassy doctor in Timor straight away and was advised to head straight home.
Within a week, a biopsy and PET scans were taken, with surgery booked to have the lymph nodes removed from under her left arm.
Emma was diagnosed with stage 3 melanoma. Based on the pathology of her lymph nodes, she was told there was a 70 per cent recurrence rate in the next five years.
A few weeks later, when investigating whether or not she was eligible for a new clinical trial to try and stop stage 3 patients progressing to stage 4, she was told some devastating news: her melanoma had spread to her liver. Emma’s 70 per cent recurrence rate had now changed to only having a 10–15 per cent chance of being alive in five years.
Emma started treatment on a MEK inhibitor (trametinib) and a BRAF inhibitor (dabrafenib), accessed on compassionate grounds. Unfortunately at her first 3-month scan, the disease had continued to spread, and fast, infiltrating her liver, lungs, pancreas, spine and subcutaneous tissue. Emma, at only 22, was told she had three months to live.
Determined not to give up, Emma joined a clinical trial of the immunotherapy PD-1 drug, MK3475. “I’m happy to report that right now, the treatment is working,” says Emma. “And when it stops working, I’ll jump onto whatever else is available. There’s no cure for advanced melanoma, but I know that these drugs can buy me time, and time is everything to me.”
Emma has taken to writing a successful blog, called Dear Melanoma, as a means to express her emotions openly and honestly, and to help make sense of her situation.
“I hope my blog can go beyond being just an aid for me to cope with my melanoma journey, but also help other people or families touched by this disease,” says Emma.
The Dreaded Bucket List...
By Emma Betts
One of my biggest internal struggles on my cancer journey has been with the sometimes exciting, but largely depressing, notion of a bucket list.
My choosing to have, or not to have, a bucket list would change every few weeks. But I realise now, the weeks when I was pro-bucket list I was convincing myself that ‘living in the moment’ and ‘making the most of life’ were phrases that instilled purpose and happiness in a time of uncertainty and sadness. However, when thinking about what I would write on my bucket list, I did not feel like I had purpose and I definitely did not feel happy. Instead, I felt defeated, upset, and I felt like I was dying.
For me, a bucket list was a reminder of what I could not have.
When I sat down and thought about what I wanted to achieve in life as a woman in my early 20s, I could add little to my bucket list if I was hoping for it to be realistic.
My dream has always been to be a wife, but most importantly to be a mum. I remember when I was in East Timor travelling with a group of young people, we were discussing what we wanted to be when we ‘grow-up’. As we went around the circle I heard of their amazing career aspirations and I was nervous. My dream was nothing like any of theirs. My dream was to be a Mum and my career would come second to this.
My dream of being a mother has slipped away. Unless a miracle was to happen, I will never be a mother. Even if that miracle happened and I went into remission, Serge and I would be faced with making a decision to have a child knowing that the chances of my cancer coming back would be real. We would have to discuss the reality of Serge being a single parent. I couldn’t add my biggest dream of being a mum to this bucket list, so I moved onto thinking about my other goals for the future.
My year working in East Timor confirmed my career direction. I wanted to go back to University and study to become an Occupational Therapist. I had been accepted into a postgraduate masters and had begun prerequisite study when I was diagnosed as Stage 3. When the diagnosis changed, my chances of being well enough to do full time study, let alone be alive to graduate were slim. So out went that dream.
So my big goals in life were out the window, hence my first reason to be angry at the idea of a bucket list.
I moved onto my second plan of attack. I thought if I didn’t have children and didn’t have the responsibility of a career, what would I be doing? Without hesitation, I would be continuing my love affair with travelling. Serge and I could see the world together. I could easily write a bucket list of all the places in the world I wanted to see. I would take Serge to the places I have called home, Guatemala and East Timor. We would eat our way through Central and South America.
We would island hop through the pacific (of course, remembering to slip, slop and slap!). We would visit Serge’s extended family that is spread out throughout Bosnia, Serbia and Croatia. There would not be a corner of the world excluded from my bucket list.
But once again, I was left defeated. The majority of places that made up my list were strongly discouraged by my doctors as holiday destinations for a person with advanced cancer, but moreover, a person with a little mystery mass that had called my brain home. I was given suggestions of countries that would be safe for me to travel to, as well as countries where we would not be faced with crazy medical fees if something were to happen to me when I was there. But I did not like the idea of having a list that was limited. If a bucket list was to play such an important role in my life, I didn’t want to write it with restrictions.
My first two attempts at a bucket list failed. My social workers listened to me go back and forth about the worth of a bucket list. You would think, surely, that I would be able to put a list of things together that would brighten my last however long and create wonderful memories. So I went to trusty google (I never learn!) for some inspiration. There were lots of exciting things to fill a list with – swimming with dolphins, learn to surf, learn a new language, take up dancing etc etc. However, at the end of the day, I realised that my biff with a bucket list was not just because I couldn’t fill it with all the goals I wished for in my life, but it was because at the end of the day a bucket list is something I was to write because I am dying.
It is at this point that I placed a bucket list at the very bottom of my to-do list.
A bucket list may mean something different as I move further into my cancer journey, but for now, I am going to try a different kind of list. What makes this list different is that it isn’t about making sure I go out and create memories before I die. Instead, it is about bringing joy to my everyday life.
I am going to share with you my first three items on my list:
- To always have beautiful flowers in our home
- To always order a pavlova if it is on the menu at a restaurant (ignore all concerns for my waistline)
- To have a ‘fold-down’ (all cushions removed from my bed and blankets turned down) by Serge every night. (I don’t know if Serge would approve of this one, but it is one of my favourite things!)
For now, this list will be my answer to a bucket list.
This article was originally posted on Emma’s blog, Dear Melanoma.
Emma has also written a follow-up blog entry, Exciting Additions to ‘My Quasi-Bucket List’…
My Life in Limbo
By Emma Betts
A few weeks ago, I shared on my Dear Melanoma Facebook page that I had made an appointment to go and see one of the psychologists at the Cancer Council office in Brisbane. I shared this piece of very personal information because I wanted other people to know that I am not this crazy strong young woman that you might think I am from reading my blog or interacting with me online. And, although my treatment is going well, I still struggle with living every day knowing that my time is short. I needed to see a psychologist to have a good cry too and work out how I am going to navigate life with a terminal diagnosis.
When asked by the psychologist at my first session what I wanted help with, I told her that I was struggling with balancing living each day like its my last and living a life where I look forward and plan for the future… but a short future. I needed to know how to navigate a life in limbo.
This may be a difficult dilemma to comprehend, but it is a dilemma shared by many, especially young people, who have a terminal illness.
My life is in limbo.
In January, I was planning my death. My treatment was not working and we did not know if I would gain access to a clinical trial, or even respond to the treatment. I had met with a palliative care team. We discussed how I wanted to die. We spoke about how I would prioritise saying my goodbyes – did I want to say goodbye to everyone or spend my weeks with my family and closest friends. We went on a family holiday to Hamilton Island, thinking it would be our last chance.
And by far the most difficult part was when I started to plan what I would leave for my husband, parents, sisters, family and friends.
I started collecting my favourite Twigseed cards and hiding them away. These would be my gift to Serge. Letters to open on important anniversaries, letters planned for his next ‘Great Love’, letters for when he has children. My wedding and engagement bands would go to my sisters and mum. I planned to start collecting my favourite children’s books to give to my nieces and nephews, books that would teach them all the things that I would have hoped to teach them myself.
The list goes on. I needed to be ready. I had planned my goodbyes. I had planned my death.
Serge stopped working so that we could spend as much time together as possible. We went on romantic weekends away. We would go out and enjoy meals together. We would live each day as it was the last.
But things changed. I started responding to treatment. This was absolutely fantastic news! I wasn’t given a cure, but I was given much needed time with my new husband, family and friends.
Almost 10 months on, I am still here and I am still responding to treatment. There is no sign that things are going to deteriorate any time soon.
This is where the life in limbo begins to take its toll. I had planned my life thinking that I only had months to live. What happens when you find out you may have a few years in you? Do I go back to my pre-cancer plans or do I continue living in the moment?
I can tell you now, although Serge and I get to do lots of fun stuff together, living in the moment isn’t as good as it sounds! Some of you may have read my blog about my dreaded bucket list. Like I said in that blog post, every time I would ‘live in the moment’ and do something fun, it was a constant reminder that I was doing this because I am dying. It gets tiring!
But, on the other hand, the alternative that I imagined would be that I would just go back to how life was pre-cancer. I would go back to university and study or I would work. And then my mind would tick over and remind me that being stressed at university or doing a job ‘just because’ is no way to spend your last years.
So, welcome to my life in limbo!
I am embarrassed to say, but sometimes I think about how it was easier knowing a time frame. I felt I could plan for that time. People ask if I am glad that I asked my doctor for my prognosis, and I have no hesitation in answering. I do not regret finding out that, if this next treatment option didn’t work, I would only have months.
How do you navigate life with a terminal diagnosis? How do you plan for the future, a future that is so unsure? How do you balance having fun, with being real? What does living in limbo mean for me?
I do not have the answers to these questions, nor does my psychologist, but I can hope to somehow manage the emotions that come with living in limbo.
Ralph, our new puppy, was an addition to our little family in hope that he could bring a purpose to my days. Someone that I could take care of. Someone that does not see me as Emma with cancer, but just Emma. We have only had Ralph a few months, but he is everything I hoped him to be.
My blog, Dear Melanoma, as well as my work raising awareness and funds for melanoma has kept me busy. I love writing my blog and engaging with complete strangers on Facebook. Planning events and working with Melanoma Institute Australia keeps my braining ticking and utilising skills from my previous study.
With these things, I do feel like I have purpose and something to add to the world. They are things that I can do now and aren’t dependent on planning far in the future. Serge and I continue to have our days where we do live in the moment. We travel when we can, we go on dates together, and we just enjoy life in general. If there is something we want to do we don’t dwell on it, we just do it.
I am managing living in limbo the best I can, I don’t try and solve this dilemma, but I try my hardest to work with it.
To all of those people who are living a life in limbo, I hope this can bring you some ease. You are not alone on this journey. You have been faced with some thing that not many people can truly comprehend.
This article was originally posted on Emma’s blog, Dear Melanoma.