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. Read More
About 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 More
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. Read More
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
A few weeks ago I went to my first melanoma support group meeting.
Attending a support group meeting is something I never thought I would do. It is something that I was scared of.
I was scared that I would potentially be faced by what would be my future. I was worried that we would be sitting around in a circle discussing our treatment and our feelings. I was worried that I would begin to compare my journey with others. I was worried that I would be bombarded with suggestions of crazy diets that will cure my cancer or distant lands that promise remission. And, I was worried that the green-eyed monster that has appeared in the last few months would thrive Read More