I thought I would get in early and reflect on the year, and what a year it has been!
As I always say, most people would consider that my year has been the epitome of shitty, but gosh there was a lot of joy shoved in there.
It was January 6 when we found out that my treatment was not working and the cancer had spread to most of my major organs. And it was on this date that I asked my doctor how long I had to live, and the response was only months. We were told to go and do what we had to do and to live… you know its not good when your doctor gives you that kind of freedom!
With this news, we entered 2014 with the need to make memories.
Read MoreAbout a month ago on the Dear Melanoma Facebook page I spoke about my mission to find a great swim top. Although I avoid the most dangerous parts of the day, try and swim in pools with shade and wear sunscreen, it is no longer sufficient.
As a side effect of the clinical trial I am on, I am losing the pigment in my hair and skin. At first it was only my hair – my eyebrows started to go white and then the front segment of my hairline. Thank goodness for hair dye and an amazing hairdresser! But, unfortunately, over the last few months the pigment in my skin is slowly disappearing leaving me with some areas of patchy skin and zero protection. I can get burnt walking short distances or even out for a few minutes at the clothesline. What I didn’t know was that sunscreen would provide zero protection to my skin. Once there is no pigment, sunscreen provides no protection. For example 50+ sunscreen gives 50 times your own skins ability to protect itself from the sun. Therefore, I have no protection.
Read MoreLast night I was so excited to see that the Dear Melanoma facebook page reached 2000 likes. I wanted to take the opportunity to thank everyone that has followed my journey.
Earlier this year I was going back and forth about whether I wanted to document my life with melanoma. I knew that my friends and family would read it, but never did I expect that I would be opening my life to be scrutinised in the best possible way by the public. Over 65 000 people have read my blog – wow! People know my face and my story and are not afraid to stop me when I am out and about. I knew that if I was to do this, I wanted to write a blog that was 100% honest. This meant that there would be hours spent in front of my laptop with tears running down my face documenting some of my saddest moments and some of my biggest fears I have about dying.
Read MoreIn 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.
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