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.

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.

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.

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

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.