Wednesday, 13 November 2013

My Story

 Hello. My name's Kate. I'm 25, living in Melbourne and this is my story. 

When I was a  little girl, I lost my mother to stomach cancer. Almost a year ago now, I also lost my little sister to the same terrible disease. In both cases, the cancer took over and their lives were taken within only a few short months. I can't imagine I'll ever have to go through anything worse than having to say goodbye to my baby sister. 

It was discovered through genetics testing that my sister was carrying a rare gene mutation of the gene CDH1 which she had inherited from my mother. I chose to have the test to see if I was also carrying the gene mutation as I also had a 50% chance. 

I received my results a little over a month ago and they came back positive for the gene mutation. Having this mutation means that I have an 80% risk of developing stomach cancer and a 60% risk of developing breast cancer. Just to give a comparison, the general public's risk for developing stomach cancer is about 1.2% and for breast cancer is 11% (from information given to me by genetics specialists). This particular type of gastric cancer is extremely rare and I've been told that only 30 families in Australia have been found to have the gene mutation.

There is currently no accurate screening method to detect the early stages of stomach cancer, particularly this type of cancer as it generally develops on the outer layers of the stomach. It's like my stomach is a ticking time bomb and could explode at any time. Given my mum and my sister were so young when they were diagnosed (30 and 21), I'm not willing to take the risk of doing nothing so I've chosen to have a complete gastrechtomy which is a total surgical removal of my stomach. 

Post Results - Beginning

To begin with the idea of having my stomach taken out sounded completely crazy to me and I couldn't comprehend the idea that I could live a normal life without it. I was extremely angry at the world and had a big pity party for a good week, feeling sorry for myself and jealous of everyone else who didn't have to deal with such life-changing news. It made me angry that I've always been really health conscious by exercising and eating the right foods but in the end, it won't make a difference to whether I develop stomach cancer so surgery is the only choice. 

Although I do have a really supportive group of friends and family who I know will be there for me no matter what (and I'm very grateful for that), I felt very isolated in my situation; not knowing anyone who had been through anything even slightly similar. One of the reasons for starting a blog is in the hope that sharing my experiences might be able to help somebody in my position. 

Post Results - Now

I decided that self pity is going to get me nowhere so I've started thinking a lot more positively about things. I've been given a chance at life that neither my sister or mum were given so I need to make the most of it. I've had a such an eye opener and have realised that I have to do everything in life that I've always wanted to do because life really is too short. I don't want to have any regrets. 

One of my close friends, during a day trip to the beach (below) recommended I read the book 100 Things by Sebastian Terry (http://100things.com.au/). I've only just started reading the book but I've been so inspired by it and have started to write my own bucket list (which I'll reveal in another post). 


Since dealing with the initial stage of my news, I've been really happy and excited knowing that I have a lot to look forward to in the future. I'm also trying to enjoy every moment I can in the present and have not let petty things bother me so much. I took a trip to Thailand (more to come on this later) recently with one of my good friends and had the time of my life. It made me even more excited to see the world and experience everything it has to offer. 

My Operation

Currently it's just a waiting game for when I'll actually have my operation. It could be anytime within the next 6 months. It's going to be a big lifestyle change when it happens so I'm just enjoying life as normal for the time being and making sure I eat and drink as much as I want to (as I probably won't ever be able to pig out again!). On the bright side, I'll probably never have to worry about getting fat (typical girl comment I know). 

Why "It's the beginning, not the end."?

There are a couple of reasons for the name of my blog. One of these is quite obvious being that post operation will be a new beginning for me but not the end by any means. 

These words also have a very special meaning to me. When my sister was really sick, she started to write down a number of things she wanted to do - her own bucket list. On her list was to get a tattoo with the words "It's the beginning, not the end". She was too sick to ever be able to get her tattoo so I asked if she minded if I got it for her instead. So, I got my first tattoo as something to always remember her by. 

There are also a number of reasons for me wanting to start a blog:
1. To connect with anyone in a similar situation to me and to share my experiences
2. To raise awareness of this rare type of stomach cancer and gene mutation
3. To give me something productive to focus on during my recovery
4. To use as a forum for me to work on my "bucket list"
5. To list things I've already done in my life that I loved and want to share with the world

Thank you for taking the time to read my first very blog post. I look forward to sharing more soon!

Kate

4 comments:

  1. Wow - That is a heartbreaking story - and a life changing decision for you. Good luck with it all. Thankyou for sharing. I will make sure to follow your story.

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    1. Hi Michelle thanks so much for reading and for your comment. It means a lot that people are responding to my story

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  2. Kate you are so brave! And good on you for looking on the bright side of life when you can.

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  3. Thanks Claudia that's really kind of you to say and thank you for reading.

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