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?

A friendship with no regret...

Last night I found out some amazing news, my dear friend Kathy was told she is NED (no evidence of disease) – she has had a complete response to Keytruda, the drug that I am on. I am so genuinely happy for Kathy, her husband Ant, and the rest of her family.

Let me tell you a little about Kathy and I. Lets just say we are mutual stalkers with a love for hairy men.

My first encounter with Kathy was at one of my first treatments of Keytruda. I was sitting with Serge having my treatment and I told him to look over to the other side of the room – I pointed out a young woman and a bearded man and said, ‘look Serge, she still has hair and she likes bearded men too!’ Kathy’s husband is pretty much the blonde version of Serge.

That was it. No contact was made – just an observation.

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.

My love affair with Pavlova...

Pavlova

As you all know, I am obsessed with Pavlova. As my ‘quasi-bucket list’ states – if Pavlova is on the menu at a restaurant, I must order it.

I am a Pavlova snob. I am a traditionalist – no chocolate allowed and no Coles pre-made bases! I also have very high standards for myself when it comes to baking a Pavlova. The pressure and stress I feel when a Pavlova is in the oven is ridiculous!

Good news and bad news...

A quick update...

Last week I shared the news that my latest CT scan wasn’t great. A lesion on my adrenal gland had grown and there appeared to be activity in my lymph nodes.

It is really difficult to explain the emotions that were triggered by this scan. On one hand, I felt silly that I was so upset by these results because the big picture was not that bad – everything else was stable, which is great! But, this one naughty little lesion had the potential to change the direction of my treatment, a treatment that essentially bought me back from death’s door.

It feels like a lifetime ago that I was given three months to live and being told that my only hope of more time would be gaining access to a clinical trial of the drug Keytruda and hope that it would work.

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…

My healing pup...

Crazy dog lady here! Today is our beautiful Ralph’s 1^st birthday and what better way to celebrate than to write a little blog post about what joy and love he has brought to our life – especially mine.

I am going to be honest – I am not a dog person, I never have been and probably never will be. I am a Ralph person. The desire to introduce a little pup to our life was definitely a shock. I did not ever anticipate that I would so badly want a puppy. Nor did I anticipate that I would have my armour and sword drawn ready to battle our landlords (my parents) and future body corporates during the hunt to buy our own place.

So what was it over a year ago that made me start the hunt for a puppy and, in turn, convince Serge that we NEEDED a puppy?

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.’

As long as its not cancer, I can manage...

I never thought that I would so casually say, ‘as long as its not cancer, I can manage’ or ‘it is better than the alternative – dying’. However, this has become my reality. It has become my mantra this week.

As those that follow the Dear Melanoma Facebook Page would know, I have had a bit of a rough trot emotionally. However, this last week I have had some scans and tests that fall outside my normal scheduled trial scans. Enter stress, fear, worry and absolute panic mode.

The last month I have been Ms Twitchy McTwitch. I randomly developed a twitch that is the epitome of annoying. Most (lets be honest, pretty much everyone) that I mentioned it to felt the need to share their story of how they often have twitches and it is due to stress or fatigue. I am very well aware that this may be the case as it is not the first twitch that I have had in my almost 24 years, but what sets my special twitch apart is the fact that I have CANCER – CANCER IN MY BRAIN. For me, it is not quite so easy to dismiss it as just fatigue or stress, but instead I fear that this may be an indicator that something is happening in that brain of mine or potentially could be a sign that the cancer has spread to my spinal chord.

My bittersweet Mother's Day...

I have decided to share with you what would have been my first ever blog post on Dear Melanoma… but I chickened out! Here it is a year and one day on!

Tomorrow we celebrate Mother’s Day, a day that has always been low-key in my family home, but still a day that never goes without some kind of token to celebrate or treat my mum. I want to write about some of my own feelings that have been with me for some months now. Feelings that I have not openly shared.

I have always thought that I was born to be a mum. When I was at school, especially in high school, I was asked what I wanted to be when I grow up; I never really had an answer. Most of my peers would list endless careers, but I couldn’t. I just knew I wanted to be a mum. My career would simply have to fit around me being a mum.

The battle of words...

For those of you that follow the Dear Melanoma Facebook Page, you would know that I do not like using the terms ‘fighter’ and ‘warrior’ when referring to my journey with melanoma and terminal cancer, nor will you ever hear me refer to another person using these terms. This is purely personal, as I know many gain strength from such terms.

A few days ago, I was discussing this with a friend and it prompted me to write a blog about why I do not find strength in these words, but instead frustration. I am not asking people to stop using these terms, but it is important for people following my blog to understand why I may hesitate to be part of awareness activities or conversations that use these labels.

However, most importantly, I want people to leave this blog understanding that everyone’s journey is different. Everyone responds to their diagnosis, or their loved ones diagnosis, in different ways. Everyone has a different way of coping. 

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.

Oh, what a night…

The title of this blog may lead you to think that I am writing an entire 1000 word essay on my ability to sing along to every word of the Four Seasons song, ‘Oh, what a night’… you are wrong!

Instead, I am finally filling you all in on the amazing success of ‘Through the Looking Glass’, which happened over a month ago now.

Since the event, I have been gallivanting around Hawaii, but also contacting all those involved in the event thanking them (still working on this one… sooo many people!) and finalising the fundraising total.

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.

Just Emma...

As many of my friends head back to university this week, I reflect on life before cancer. A life where I was just Emma, not Emma with cancer.

The other night I had a little cry to Serge. I was upset because I felt that there are people in our life that know only one side of me – the side that has dominated the last 18 months of life.

I forget what it is like to have people ask what I studied, where I worked, what my career aspirations were. Yes, all these I speak of in the past tense because the reality is that, unless a miracle occurs, these are indeed memories and dreams that were pre-cancer.

Through the Looking Glass - the beginning of a very impressive raffle/auction list...

Oh my giddy aunt, we only have 4 weeks to dust off our dancing shoes and find a frock for Through the Looking Glass! For those of you that may have been living under a rock, I am hosting a fundraiser, a cocktail event in Brisbane, to raise money for Melanoma Institute Australia.

Since being diagnosed with Stage 4 melanoma, I have dedicated the time I have left to raising awareness of melanoma, but also raising much needed money for research. Selfishly, I want options. I want to know that once this treatment stops working that I can jump to another clinical trial. This is why I want to raise money for research.

I have been overwhelmed by the support that has been shown for the event. Tonight I want to share with you all the amazing raffle prizes/auction items that have kindly been donated to Through the Looking Glass. I hope this makes you even more excited about the event!

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