The year that was...

I thought I would get in early and reflect on the year, and what a year it has been!

As I always say, most people would consider that my year has been the epitome of shitty, but gosh there was a lot of joy shoved in there.

It was January 6 when we found out that my treatment was not working and the cancer had spread to most of my major organs. And it was on this date that I asked my doctor how long I had to live, and the response was only months. We were told to go and do what we had to do and to live… you know its not good when your doctor gives you that kind of freedom!

With this news, we entered 2014 with the need to make memories.

The mixed emotions of Christmas...

I had big plans for Dear Melanoma in the lead up to Christmas! I was going to write a blog for the ’12 days of Christmas’, but I continually put off writing and here we are today, Christmas Eve, finally posting something.

For those of you that follow the Dear Melanoma Facebook page, you would know that I have a slight (raging) obsession for Christmas. It has always been this way. From December 1 October-ish (lets be honest) Michael Buble Christmas Carols are on repeat, the plans for the Christmas tree are underway, shopping has began, I drool at all the Christmas decorations in the shopping centre, and I fantasise about what Christmas day will be like.

Yay for stylish swimwear that is sun safe!

About a month ago on the Dear Melanoma Facebook page I spoke about my mission to find a great swim top. Although I avoid the most dangerous parts of the day, try and swim in pools with shade and wear sunscreen, it is no longer sufficient.

As a side effect of the clinical trial I am on, I am losing the pigment in my hair and skin. At first it was only my hair – my eyebrows started to go white and then the front segment of my hairline. Thank goodness for hair dye and an amazing hairdresser! But, unfortunately, over the last few months the pigment in my skin is slowly disappearing leaving me with some areas of patchy skin and zero protection. I can get burnt walking short distances or even out for a few minutes at the clothesline. What I didn’t know was that sunscreen would provide zero protection to my skin. Once there is no pigment, sunscreen provides no protection.  For example 50+ sunscreen gives 50 times your own skins ability to protect itself from the sun.  Therefore, I have no protection.

A wonderful organisation called Redkite...

This is an important blog. It is important because I want to highlight the amazing work of a very special organisation.

Redkite is an organisation set up to support young people (under the age of 24) with cancer, as well as their family. Their support is extensive and holistic. They do not just look after the person with cancer, but make sure the patient’s family and friends have the support necessary to get through this difficult time. They ensure that the impact of cancer does not cause financial stress. They assist young people to continue to achieve their career and educational aspirations. They provide emotional support and guidance. And, when necessary, they support their clients through grief and loss.

Pretty amazing, aren’t they?

My life in limbo...

 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 to 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.

Thank you for 6 months of support and love...

Last night I was so excited to see that the Dear Melanoma facebook page reached 2000 likes. I wanted to take the opportunity to thank everyone that has followed my journey.

Earlier this year I was going back and forth about whether I wanted to document my life with melanoma. I knew that my friends and family would read it, but never did I expect that I would be opening my life to be scrutinised in the best possible way by the public. Over 65 000 people have read my blog – wow! People know my face and my story and are not afraid to stop me when I am out and about. I knew that if I was to do this, I wanted to write a blog that was 100% honest. This meant that there would be hours spent in front of my laptop with tears running down my face documenting some of my saddest moments and some of my biggest fears I have about dying.

Through the Looking Glass: TICKETS ON SALE

Tickets are now on sale for 'Through the Looking Glass'. To purchase tickets go to Brisbane Tickets or http://brisbanetickets.com.au/event?id=853.

When photos take on a new meaning...

Yesterday Serge, Ralph and I went and had photos with the lovely Tanya, from Tanya Love Photography. Tanya was our wedding photographer and has been an important part of our journey the last year and a bit.

I have been planning for a few weeks now for us to have some photos taken – I wanted to capture some moments with Ralph when he is still a scrumptious little puppy. However, I only told Serge about the photo shoot a few days before. When I told Serge about the photos, he looked at me with disgust. He didn’t really feel like taking his Saturday afternoon to go and have photos, but I gently reminded Serge about the importance of photos.

Introducing 'Through the Looking Glass'...

'Through the Looking Glass' will be a night that you won't want to miss. 

'Through the Looking Glass' is an event inspired by the little luxuries in life that we often take for granted or restrict to special occasions - think champagne, flowers, pavlova, chocolate, and cheesy music.

'Through the Looking Glass' is hosted by Emma Betts, from Dear Melanoma, a Stage 4 melanoma patient. After being told that she may only have 3 months to live in January, Emma was lucky enough to gain access to a clinical trial that has bought her much needed time with her husband, family and friends.

It is from this that Emma wants to spend the time she has raising awareness of melanoma and much needed funds for melanoma researchthat will lead to more clinical treatments.

All money raised from this event will go to the Melanoma Institute Australia.

Join us for a night of fun and let's raise lots of money!

When: 7pm, Saturday 28th February 2015

Where: Mirra Private Dining and Events, Fortitude Valley BRISBANE

Cost: $150 (includes a night of canapés and alcohol)

Dress code: Cocktail

TICKETS WILL GO ON SALE SOON

A dedication to my husband. Serge...

The 31^st October is a special time for Serge and I, not because it is Halloween, but because it marks a year since we got engaged.

Tonight I want to dedicate this blog to what an amazing man my husband is – the sacrifices he has made for our love and all the joy that he brings to my life.

As a very wise woman (Rebecca Sparrow) said to me, not everyone is lucky enough to find a Great Love in his or her lifetime. Although my lifetime may be short, I am so very lucky that Serge arrived when I needed him most.

Hope in death...

In January, I was sitting down with a palliative care team discussing how I wanted to die. I did not ask about what I could expect. I didn’t ask about the pain I would feel. I did not ask about how I will lose my independence. I already knew what to expect from my last months or weeks of my life.

Instead, I told the palliative care team what I wanted. I told them how I wanted to die. I wanted to die in my family home. I did not want to spend my last days in a hospital. I wanted to die in the bed I share with my husband. I did not want to be forced into a single hospital bed away from my husband.

I know that my last weeks aren’t going to be nice and I am either going to be in pain or out to it on painkillers, but all I can wish for is an ounce of control. Control that cancer would slowly take away from me.

Exciting additions to my 'quasi-bucket list'...

For those of you that follow me on my Dear Melanoma Facebook Page, you would know that I have been in a bit of a slump. I have been travelling along Struggle Street for the last few weeks. I have been sad, moody, irritable, and most of all, I have been lost… Poor Serge probably needs a man date after what I have given him the last few weeks!

I have been struggling with finding purpose in despair. I feel like I am living a life in limbo… and I am still not good at the limbo! Do I continue living life like I only have months to live OR do I go back to what my plans were prior to cancer (study, work, etc.)?

15 things NOT to say to someone with cancer

Over the last 12 months my personal Facebook has gone off. I feel like I am the new cool kid on the block. I have had an influx of friend requests from people that I have not seen for 20 years (take note that I am only 23!). Friend requests from friends of friends. Friend requests from my sister’s friend’s sister. And friend requests from complete strangers. I apologise now for deleting 90% of these requests.

As you can guess, I haven’t been short of people offering love and support to me over the last 12 months. I have the most amazing family and friends who have been with me every moment of the journey. But unfortunately, I have lost some friends along the way and shed many tears over what some people consider being supportive.

My advice for Stage 1 Melanoma patients (and anyone else that wants to listen!)

Since writing this blog, I have had many people contact me sharing their story and asking advice. The majority of the people that write to me are Stage 1 melanoma patients, so I have decided to write this post for them. For those of you that don't have Stage 1 melanoma, I hope you still find it useful... and a little entertaining!

Here is my advice for you!

1. Three monthly skin checks

Annual skin checks are recommended for the general population, but once you have been diagnosed with Stage 1 Melanoma this changes. You are strongly recommended to have 3 monthly skin checks for at least 2 years. It is only when you have not had a recurrence that your 3 monthly skin checks can return to 12 monthly.

Three monthly skin checks will aid in early detection and ensure you remain at Stage 1.

Navigating life in East Timor

This week marks a year since leaving East Timor. To celebrate this, I am going to write without mentioning melanoma (phew! no tears!). And to be honest, although the majority of my time spent in East Timor was spent as a Stage 1 melanoma patient, little time was spent thinking about melanoma. I followed the rules of returning to Australia for frequent skin checks and would always slip, slop and slap. I was a patient with a 95% chance of survival. There was only a 5% chance that this cancer would spread. Nothing to waste precious time worrying about!

I left for East Timor at the end of July 2012. I had just finished university, graduating from a Bachelor of Arts in International Relations and Peace and Conflict Studies, and I had no idea what I wanted to do with my future. So like many young people, I was tossing up between travelling and studying more… anything that meant I did not have to enter the grown up world of a 9 to 5 job. I decided that I would seek out the opportunity to travel and volunteer in East Timor for 3 months, leaving the opportunity open for me to begin study the following December. I ended up continuing for 12 months and putting post-graduate study off for another 12 months.

My fear of leaving a widow behind...

As many people would know I have a slight (raging) obsession for the show Offspring (Yes, I had to make sure that you didn’t think I was talking about the band)!

One of the hardest part of living in East Timor was missing out on watching Offspring. East Timor failed me on two levels. Firstly, I couldn’t rely on the local, not so legal, DVD shop to be up-to-date with the most recent episodes. And, secondly, my internet connection couldn’t refresh Facebook, let alone watch TV online. So, what does a girl do…I would rely on my trusty mother to record all the episodes and I would have an Offspring marathon when I came home for a holiday (skin checks) every three months. She is a good woman!

The dreaded bucket list...

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.

New Facebook page

Hi everyone,

I just wanted to say a huge thank you for all the support you have shown this blog and, in turn, me.

Because I have had such a positive response to 'Dear Melanoma', I have started a Facebook page to work alongside this blog. Not only will I post links to new blog entries, but I will be able to share everyday thoughts and feelings that don't warrant an entire blog.



Here is the link:

www.facebook.com/dearmelanoma1

I hope you enjoy.

My irrational green-eyed monster

A few weeks ago I went to my first melanoma support group meeting.

Attending a support group meeting is something I never thought I would do. It is something that I was scared of.

I was scared that I would potentially be faced by what would be my future. I was worried that we would be sitting around in a circle discussing our treatment and our feelings. I was worried that I would begin to compare my journey with others. I was worried that I would be bombarded with suggestions of crazy diets that will cure my cancer or distant lands that promise remission. And, I was worried that the green-eyed monster that has appeared in the last few months would thrive.

Our love story: Serge's version...

Now to introduce Serge’s version of our ‘love story’.

Serge has given me permission to share this, but what he doesn’t know is that I have chosen to point out the inaccuracies in his story. Hopefully I won’t get in too much trouble!

I am sure after reading this post, and my previous posts, you will agree that I am so lucky to have found Serge. I think Serge was put on this earth to be my rock, my support, and my light. Serge brings so much happiness to each day, even during the lowest of lows. 

Enjoy!

Our love story: my version...

As promised in my last post, I am sharing with you my version of our 'love story'.

My version of our ‘love story’…

Serge knew the majority of my family for a year or so before we even met. However we officially met at my sister and brother-in-law’s, Ashlee and Shane. I was home from Timor Leste with dengue fever and was taking the opportunity to spend as much time as possible with my niece and nephew.

Planning a wedding when juggling a terminal diagnosis

As promised, I have written a blog dedicated to sharing Serge and my ‘love story’, and what better way then to share our wedding day.

Serge and I got engaged four months into our whirlwind relationship. We started discussing where our relationship was heading after I had been diagnosed with Stage 4 melanoma – a diagnosis that would see us experience what most couples wouldn’t experience in 30 plus years of marriage.

A successful event to launch 'Dear Melanoma'

Last weekend, with the help of a dear friend Rebecca Sparrow, I launched this new blog ‘Dear Melanoma’ with a lovely fundraising morning tea.

It is only appropriate that I share the success of the event here.

We had over 200 people attend the event. And although I do not have the final fundraising figure, it is with much excitement that I can share with you that we raised more than $11000.

An unwelcome visitor who won’t leave …

This time last year, my life was on track.  

I was almost at the end of a year volunteering in Timor. I was looking forward to starting my masters in Occupational Therapy, and I was coming home to an exciting new relationship.

Life was pretty much as good as it gets for a twenty-two year old.

But then came August, and with it my melanoma, and everything came tumbling down.

An introduction to ‘Dear Melanoma’

Over the last 6 months I’ve struggled with my diagnosis. I’ve had a great support base around me. I have fantastic doctors. But what I’ve been missing is somewhere to express my emotions openly and honestly.

There have been many times throughout my melanoma journey that I’ve just wanted to crawl up in a little ball and cry, or yell at someone because what they are saying is highly insensitive, or even a way to just laugh and make light of what is a pretty shit situation.