All my life I was raised to be aware of the damage that the sun causes.
With my glowing white skin, I heard the slip, slop, slap message often. My mum would often talk about it, and although I was an outdoors kid, I never once returned home with the dreaded sunburn.
Even during my teens while others were applying sun tan oil, I remained conscious of protecting myself (it’s one of the reasons I don’t look like I am turning 40). As an adult, I maintained my yearly skin checks and kept an eye on any changes with my skin. Nothing unusual has ever been found – no suspicious moles or spots.
So you can imagine my surprise when I was diagnosed with Stage 4 melanoma.
It began with a headache.
It wasn’t strong at first, just more annoying than painful. On day two of the headache I sought pain relief, but found none. On day three, I had a feeling that I might have my first migraine and said to myself if it wasn’t gone soon I will ring my twin sister Nicole for advice. She suffers from migraines. Day four, that’s exactly what I had to do. Nicole advised “that I make an appointment with my GP, that I will go on a treatment plan and that my life will go back to normal”. I wish beyond anything in this life that the story ended there.
I went to my lovely GP, Dr Praba Selvendra, at the Park Medical Group. She asked me how I would like to deal with the pain. I said, “I want to get a knife, insert it into the top of my brain and remove the right hand side and then I think I will be fine”. She was horrified.
She sent me for an MRI “just to be safe”.
I went for the scan with my husband, Jared. It was six days since the headache had begun, and the pain was at its peak. I felt so sick and when I walked to the MRI machine I was unsteady on my feet. After the MRI, I was asked to return to the waiting area. We had been waiting for almost another 30 minutes and I asked Jared to go find out what is happening as I just want to go home to bed. The reception staff took him around the back to a room where there two doctors waiting.
When he turned the corner back into the waiting room, I knew instantly that something was wrong. He was walking in what seemed like slow motion, and his face was so grey – absolutely no colour at all. He sat down next to me and I said “so not good news then” with a little laugh. He spoke very clearly and very slowly saying “I have to take you to Sir Charles Gardner Hospital emergency, as you have two things in your brain that shouldn’t be there, I think they called them nodules”.
We both just looked at each and cried.
We arrive at Charlie’s, I was shown the scans of the two nodules. One was so tiny but the other was 2.2 cm and causing the build-up of pressure, which caused the headache. I was told if I had left it another 24 hours I would be dead. I finally got some awesome pain relief and was rushed into the High Dependency Unit. I was there for five days getting multiple scans and MRIs down. Other tumours were found in my left lung and right groin lymph node.
I got very scared for my life when the 2.2cm tumour was removed on the 21st June 2017.
I was very aware that I had so much more living to do. I wasn’t ready to go and selfishly why is it me. The operation went well. Completely removed and most importantly no deficit. I went home after five days. After being home for seven days I started leaking cerebral spinal fluid from the staples. This required many trips to see my wonderful surgeon Professor Christopher Lind and his wonderful nurse Laura.
I ended up with 19 staples and 23 stitches. Despite this I was still leaking the CSF. I went back into hospital to have a spinal tab inserted.
I remained there for another 11 days without being allowed to move. The one saving grace was my nurse Melanie. Her caring and compassion kept me smiling. It was also the time I found out that I had stage four melanoma and cried for days as I knew it was a big possibility I would be dead within months.
The oncologist came into see me. I had my sister and Jared with me. Dr Clay words were haunting “no-one wants melanoma. I have B-Raf strand which has its foot on the accelerator. We need to apply the brakes. There has been some significant improvements in treatment, yet they don’t work for everyone. We don’t know why some people live and why some people die. I can’t tell you when you might die as it depends on the response to the drugs. Some people live for nine months and others live for years. We just have to see how it works for you. Be assured that you’re young, otherwise really healthy and I will do everything to keep you around as you have so much more living to do”.
I received my life saving medications which is combination of inhibitors that target the melanoma cells, Mekinist 2mg once a day and Tafinlar 75mg two tablets twice a day. It has now been a year since my diagnosis and I feel lucky that I am still here.
The cost of this experience and living with Melanoma had become overwhelming.
We sold our apartment, we maxed out our credit card and we were left with $5.25 in our account. This is when I started the gofundme page. I really didn’t know how we were going to afford the next month’s treatment. My old workmates have been the biggest contributors and I will never have enough words to thank them.
Today I find myself in a better place. The medicines are working for me. The other tumours are shrinking, I have an amazing husband and I really found how who my true friends are.
Melanoma can regress quickly, which is the theory behind my diagnosis. A mole doesn’t always change, your skin might always show it’s there. So then how do we beat it? Be vigilant. Don’t be afraid to check and get to know your skin.
Check weekly in the shower, if you think anything is unusual for you, get it checked. Don’t let anyone tell you it’s nothing. You know your body, trust it, believe in it and most importantly take care or it.