Our engagement...

Halloween marks two years since my engagement to Serge. Last year I wrote a post dedicated to Serge – it was heartfelt and loved up (you can read it here). I am too lazy for that nonsense this year! Instead, I thought I would answer the question that you often ask – how did Serge and I get engage?

Quiet blog = happy, excited and busy Emma...

I have had a few messages the last month or so from people asking if I was okay because I have been a bit quiet – thank you for checking in, it means the world! When it comes to my actual blog I have been quiet, but for those that follow the Dear Melanoma page, you would know that Serge and I have been super busy!

This observation made me sit down and think why I have not been writing as much. I do not have a pile of blogs scheduled to post on specific dates. My blog is very much written in the moment, often an hour or two before I actually publish them online. They are written in the heat of the moment, in the midst of tears and tantrums, and more often than not, when I am riding the very lowest point of the roller-coaster I call my life.

The Care Package...

So Dear Melanoma Facebook Page went off last night. I felt like I was back to the evening when we had a mighty fine conversation about the stupid things people like to tell someone who has cancer – what a hilarious night it was! Last night I asked the Dear Melanoma community what they think should be in a ‘care package’ for people with cancer.

How did this come about? Well, as many of you know I work one day a week at a fab little gift shop in Brisbane. I often have people come in to work and ask for advice on what to give a friend that is sick and I normally just point them in the right direction and make some suggestions – I often will not tell them my personal situation. However, on Monday a lady came in and asked for help – she wanted to put a care package together for a friend who was about to start chemo. She was at a complete loss of how to support her friend and this was the perfect thing to show her love and support.

Lessons from unattractive blubbery tears...

As many of you know last weekend I surprised Serge with a night away. Yes, I know what you are all thinking I am the one with cancer, I should be treated to surprise weekend’s away… I joke!! You all know what an amazing man Serge is and that he is very deserving of a weekend away. If money grew on trees Serge would be treated to lots of surprises – we can only dream!

Serge and I have had a pretty hectic last few months with my sinuses playing up and Serge has been busy with work. We have both been a little bit low and getting a bit narky at each other. We haven't had much time to be madly in love. We always try and spend our free days together and do something special, but this just hasn’t happened. And since the purchase of our little humble abode, planning our next big adventure seems a bit irresponsible. However, having an adventure on our horizon in many ways keeps us going, in particular me – it gives me something tangible to focus on. Once again, if only money grew on trees…

Birthday tears...

For those of you that follow the Dear Melanoma Facebook Page and Instagram page, you would know that a few weeks ago it was my birthday. I was very much looking forward to the day/week and was excited (like the 23 birthdays prior), but instead I was gifted with an emotional break down.

My break down was not because I didn’t get lots of love from my family and friends. It wasn’t because certain family members or friends could not be there to celebrate.

Instead, it was 100% my fault – I put too much pressure on this celebration. I put too much pressure on making memories. I put too much pressure on making sure that this birthday was worthy of being potentially my last.

‘I wish I could be married to you forever'...

Last night Serge broke my heart a little bit…

Let me set the scene. I am in bed watching half (more like three quarter) naked men in Magic Mike – a girl has to prepare herself adequately for the sequel. Serge wanders in with his shirt tucked into his tracksuit pants that are sitting above his belly button – hot! We both laugh at the irony and I think to myself, ‘where did I go wrong?!?’

Only joking! Although that did indeed happen, that is not the moment where my heart broke a little bit. It was the moment following the belly laughs. Serge stops and tells me, ‘I wish I could be married to you forever.’

Life after cancer...

A few weeks ago a story was published by The New York Times called ‘Lost in Transition After Cancer’, the author Suleika Jaouad who at age 22 was diagnosed with Leukaemia. The story was published during Young Adult Cancer Awareness Week. Suleika wrote about her life since cancer, as well as highlighting the need for ongoing support for those, especially young adults, who are transitioning from life with cancer to life after cancer.

Take the time to read the story here.

Suleika and my story are different in many ways. Suleika had leukaemia, which meant different treatment to what I am on (treatment much more physically demanding and taxing on her body) and a different prognosis – Suleika’s treatment was always meant to get her to remission. Whereas, with Stage 4 Melanoma, remission has never been the destination at the end of my treatment journey – my doctor and I hope for time.

What is next for Dear Melanoma? Planning for the immediate future...

Here we are again – I find myself sitting in the radiology department at the PA hospital hungry, having fasted all day, and drinking contrast disguised as ‘delicious’ (a very big hint of sarcasm) lemon cordial, all of this for a 10 minute CT scan. A scan that will hopefully tell us that treatment is still working and those little suckers of tumours riddling my body are shrinking.

It looks like the hospital is running behind and I may be sitting here awhile, so what better way to spend my time than writing a blog.

This scan could very well decide my future. Unlike previous treatments, I am feeling very unfazed and not stressed. So, I am not going to write a blog fearing the future and its uncertainty, instead I am going to write about what is next in the world of Emma and Dear Melanoma.

I don't want to die...

I have had a bit of a tough week. I was hesitant about writing this blog, but when deciding to start Dear Melanoma I promised myself that I would be 100% honest. My cancer journey would be an open book to anyone that wanted to be part of it - the highs, the lows and the in-betweens.

For those of you that follow the Dear Melanoma FacebookPage, you would know that I had my six weekly scans last week. I was extremely anxious going into this scan because it fell exactly one year after the scans that told me I only had months to live. I was feeling a little bit superstitious.

When it comes to my scans my fears have shifted. I am not in fear that my cancer has started to grow and spread again, because I can physically feel certain tumours and can be relatively confident going into scans. But, instead I fear the word ‘stable’.

The word ‘stable’ in someone’s cancer story should be positive, however with this word my hope begins to disappear.

Over the last six months you have probably picked up on the fact that I am very realistic about my prognosis. The reality is that I have Stage 4 Melanoma. I have terminal cancer. I have never been promised a cure, but instead time. I know that the only thing I can hope for is time. This isn’t me being negative, it is accepting the facts and doing the best I can with the reality I have.

I have written about my fear of leaving a widow behind, the dignity I hope to die with, the importance of photos in keeping my memory alive, and the plans I have made for my death.

But, I have never spoken to you about the fact that quite simply, I don’t want to die. I am not ready to die.

There is not a day that goes by that I don’t ask ‘why me?’

I would happily give up everything that I hoped for my future just to be able to grow old. I don’t need to have children. I don’t need to have a career. I just need to be alive.

So, although I have been realistic and know melanoma is going to take my life, probably sooner rather than later, there is a little part of me that has held on to the hope that I fall in the small percentage of people that have gone into remission.

The last three scans I have been told my disease has been stable. I remember the first time I was told this I spoke to my support team at the hospital about my hope that I hadn’t plateaued. Two scans later, it seems that I have plateaued. This may be as far as this treatment can take me. I may be stable for months, or even years, but my hope of it taking me to remission is minuscule.

I have felt really embarrassed this week about being so down about my scan results. I should be celebrating, but instead I have been the most upset I have been in months. When talking to my oncologist about my results, she reflected on how far we have come in a year. No one thought that I would still be here. But then the conversation shifted to speaking about what happens when my two years on this trial comes to an end. The ‘if’ word comes into the conversation. ‘If’ I make it another year. And just how amazing it would be if I am still alive.

This conversation brings me back to reality. I am dying. The average results for this drug shows that it only buys it’s patients 22 months. I probably won’t see another year.

I may be prepared for my death, but I am definitely not ok with dying. I am not ready to die. But, will I ever be ready to die?

This week I hope to pick myself up again and just keep on plodding along.

Tickets are still available for the Through The Looking Glass a cocktail party you won't forget! All funds raised will go to melanoma research. 

http://brisbanetickets.com.au/event?id=853

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.

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.