Hello. My name's Kate. I'm 26, living in Melbourne and this is my story.
When I was a little girl, I lost my mother to stomach cancer. In November 2012, 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 in September 2013 and they came back positive for the gene mutation. Having this mutation meant 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 are currently no accurate screening methods to detect the early stages of stomach cancer, particularly this type of cancer as it generally develops on the outer layers of the stomach. Cancer cells can be too small to detect with a gastroscopy and could also be missed with biopsies. Given my mum and my sister were so young when they were diagnosed (30 and 21), I wasn't willing to take the risk of doing nothing so I chose to have a complete gastrechtomy which is a total surgical removal of my stomach. I underwent surgery in February 2014.
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 was the hope that sharing my experiences might be able to help somebody in my position.
Post Results - Later On
I decided that self pity was going to get me nowhere and 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 was so inspired by Seb's story that I wrote my own bucket list and have started to tick a few items off.
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 last year 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 travel bug has well and truly been awakened!
My Operation & Recovery
I had a great medical team at the Peter Macallum Cancer Centre in Melbourne who really helped me with accepting my decision for surgery. They helped me to realise that I could still live a normal life without a stomach.
I underwent surgery in February 2014, the day after my 26th Birthday. I was lucky enough to have laparoscopic (key hole) surgery which means minimal scarring and a shorter recovery period.
As I'm writing this, it's now been 3 months since my surgery. I'm back at work full time, eating most foods (just much smaller portions than I used to) and have slowly gotten back into exercising. I lost about 9kg overall but also put on about 6kg before my surgery so my weight loss hasn't been too drastic.
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 is 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
Life After Recovery
I cannot wait for my full recovery so I can go and start ticking off a few more things on my bucket list. I look forward to sharing these moments and adventures soon enough!
Thanks so much for your support.