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.

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?

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

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.

When photos take on a new meaning...

Yesterday Serge, Ralph and I went and had photos with the lovely Tanya, from Tanya Love Photography. Tanya was our wedding photographer and has been an important part of our journey the last year and a bit.

I have been planning for a few weeks now for us to have some photos taken – I wanted to capture some moments with Ralph when he is still a scrumptious little puppy. However, I only told Serge about the photo shoot a few days before. When I told Serge about the photos, he looked at me with disgust. He didn’t really feel like taking his Saturday afternoon to go and have photos, but I gently reminded Serge about the importance of photos.