‘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.

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. 

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.

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.

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.