Sunday, January 6, 2013

Introduction: Who am I?

Hi all. My name is Nathan Jones an educator and a husband, father to three gorgeous girls. My story begins in March 2012. I am an eager fitness fanatic and cyclist. I have raced regularly on the crit. circuit and triathlon scene. Back in March 2012 I got back from a long ride and felt sore in the chest/armpit area when I felt this area I discovered a lump. Immediately I was alarmed and booked into the doctors. From here I had scans, which didn't show enough, a week later I had a biopsy. This was painful and the bruising was ugly, apparently this is common with melanoma. (See below)
After Biopsy. 

From here I went back to my GP who broke the tragic news to my wife and I, that I had Melanoma. My GP was awesome she had gone and put appointments in place for that afternoon with my now best friend the Oncologist. 
To put things in perspective, I don't sun bake, I just keep active in the outdoors. 
I remember leaving the GP and sitting in the car balling my eyes out and thinking the worst. My wife and I left the car park and headed to my work, why we went there I cannot explain. We went into an office with the principal and told him the situation, he was positive and at the same time devastated for us, but supportive. I was teaching Year 5 at this time and didn't feel the need to tell them yet. This was the same for our girls, who are 5, 3 and 1. After school we went to the oncologist. Who explained the next few steps in this scary progress. He looked over my body to find the source of the cancer, but he couldn't, to this day he still cannot. He had diagnosed me as Stage 3A. He sent me to have a PET scan the next day to determine if there was spread. Later that week I went to another hospital for a PET scan. I was there all day on my own, by choice. 

Once the scan was done I left the car park praying that nothing had spread. The oncologist rang within minutes to tell me that nothing could be seen anywhere else. I just pulled the car over and cried like a baby. I rang my wife and did the same thing cried to her with joy. 

I still needed surgery to remove the left lymph nodes that was scheduled for later that week. This happened and all 17 nodes were removed.  Results showed only 1 of the 17 were affected. Relief to say the least! This meant no treatment was needed, this is important to note as I am now wishing I had treatment of some sort. 
I had a very short stay in Hospital and sent home with a drain bag for the wound. This was not an attractive look. 

My surgeon was happy with the surgery. As was I, neat cut and no issues. Home in two days I was rapt to be back on the bike and running a week later. Felt great!

My life seemed back to normal, Working hard as per usual, presenting at Conferences and at other schools. I was feeling like a human again. Not someone with Cancer. I made sure I kept myself fit and healthy and didn't see myself as a Cancer patient. Scans from here on were every 6 months and check ups more regularly. 


This brings us to October 2012; my/our world was turned upside down once more, this time with worse news. It was the Monday after the AFL grand-final (Australia's version of the super bowl). My team (the hawks) were playing and I was lucky enough to get a ticket. The hawks started off really well, I was quietly confident, and thought we'd win. Unfortunately it wasn't to be, I was devastated and went off to a mates place for a few beers to drown my sorrows. To add to this I was due for my 6 month scans on Monday. I was feeling great, we'd just got back from a family holiday and I presented to 50+ educators on how to use an iPad effectively in education.

Monday came and I headed off to The Epworth for the scan, I was apprehensive as all I wanted to do was get to 6 months with the all clear and a tick of approval. I had full body CT scans once finished, I headed home to spend time with the girls on my last week of holidays. Lisa went off to do some shopping and left the girls with me. 

Later that day my oncologist rang me and made up some ridiculous story that he needed to swap my Wednesday appointment to today (Monday Afternoon). I couldn't leave until Lisa arrived home and we both went into the oncologist, we arrived. I was sketchy about why I was there, Lisa was more optimistic.  We walked into the office, he said, "Its not good news," my scans came back not good. He said he couldn't tell if I had 4 or 5 brain tumours and he wanted to put me in hospital that afternoon to reduce the swelling and determine the next approach. Lisa and I were devastated. I thought I was done with all tumours. I hadn't even had that chance to say bye to my girls, this hurt most of all. 

I went to the cancer ward and booked in. I felt fine and had no idea that I was riddled with tumours. I spent that week in hospital reducing the swelling. It was lucky that I was in hospital as I had a bleed on the brain, this moved everything forward by a day. I was transferred to the city for immediate surgery they removed the bleed and two out of four tumours, a few days later they removed one more tumour and left the smallest one. 

The journey began that week. Our life's changed forever, I had gone from riding 200km a week and running 15km per week to bed ridden and relying on nurses to wash and use the toilet. My girls saw me in hospital at my worse, couldn't talk/walk properly and with a very nasty scares on my head. 

I was transfered back to my original hospital and spent a week here in rehab. After which I was sent home, my life was no where near back to normal. I was at home and in agony in my bowel area. Food was hard to digest and pass which made sitting very uncomfortable.  We went back to the oncologist who sent me to have scans, which confirmed tumours in the bowel.  I was once again booked in for surgery. I couldn't miss a trick and had bowel surgery that week. It was painful but at the same time I was starting to look like a character from a horror movie. 
I am now diagnosed Stage 4C Melanoma and not happy about it. My life has literally been turned upside down. Cycling is a passion and I am lucky enough to be doing it but not at the pace and fitness of before. I have spent a month in hospital and don't really want to be back there. I had radiation treatment to shrink the last tumour in the brain. I am now in a new drug to reduce the tumours and slow the mutation. It's called Dabrafenib. After four weeks on the drug I had scans and had an 80% reduction in Tumours, the one on the brain is gone as are the two that I had in the bowel.  I feel good and no side effects from the drug, just fatigue.  But this could be a result of riding and being on holidays with the kids. 

I am currently on School Holidays and loving the time to spend with my family. The unknown I have is how long I can stay on the Dabrafenib Drug. At this stage I am feeling great. Just need to stay like this.  

My Gorgeous girls and what I am fighting to live for.
My ugly Scars from my Brain Tumours.

Contact me: 
Twitter: @elearnjones


The support we have received from family and friends has been phenomenal. We were selling our house the weekend I had surgery. Pulled it off the market, my mates then decided to build a new deck for us and paint the house and cubby/shed in the back yard. 

My Gorgeous Wife and middle child. 

Mates chipping in to support! 
The future is looking good. I seem to be reacting well to the drug and keeping good health. I have many goals for the future, keep my health steady and spend more time with the kids, try and race soon. 

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