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.

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.

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.

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.

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

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?

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.

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.

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.