About Me

My Story

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.
Kate 

12 comments:

  1. Hi Kate,

    I was a little blown away tonight to see your storey as I too have Cuong and the familial care team to thank for a new approach to life. My Surgery was in November 2012 and I was the 5th person in my family to have it after like also losing some loved ones who didn't have our opportunity.

    I would just like to say it's motivating to read this blog and your outlook, I had close to 12 weeks in ward 3 there and I wish I was nearly as productive as you have been.

    Anyway my2 bits of advice at this point are:

    1.Never let yourself underestimate what your body has been through and adjusting too.

    and

    2.Ditch the Resource asap if you havn't already...its disgusting.

    I look forward to checking in on your updates...Hope you are doing well.

    Cheers Rick

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    1. Hi Rick,
      Great to hear from you!! It's amazing what they can do to prevent us having to go through the awful disease. I hope you're going well now that it's been a bit over a year.

      Oh wow 12 weeks is a long time - i imagine you would've been so happy when you were able to leave (although all of the staff are fantastic). I was very lucky and got to go home on my 6th day in hospital. It's been 2 weeks today since my surgery.

      Thanks for the tips and thanks for reading :) Resource is terrible haha! Can't wait to ditch it!

      Kate

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    2. Wow 6 days. Well done. My other family were all around the 6 to 10 days.

      They are awesome there. And Cuong, John and Alex are exceptional. I went under not sure if key hole was possible but I was at ease and fully trusted them.

      Now, I am going really well, and it's all down to attitude because your body will tell you what you can and can't eat and when. But persist, only you will work it out.

      Going home was mixed emotions for me, even now going back for follow ups it is weird. Like returning to a childhood home or something.I was due to go on my 7th day when some complications set in. Bags packed and all.

      Yes their isn't a staff member there that I can say didn't make my experience easier, and other patients for that matter. Its a very humbling environment.

      How are you energy levels?

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    3. That's great that your other family members were in there about the same amount of time

      They really were! Cuong has been great. I'm not familiar with Alex or John but the whole team has been truly supportive and helpful.

      That's great news! And it is very much down to attitude I think. I've had a couple of rough days but each day now is getting easier and I'm discovering foods that work well and those that don't so much :)

      I was dreading going home to begin with because I wouldn't have the nurses around constantly if something went wrong. I guess it's really lucky you were still in hospital when they found those complications.

      I'm managing to stay awake for the whole day but my energy levels aren't great. I can't really exert too much energy.. walking to the shop 100m down the road makes me fairly tired. But this is also something that is improving as they days go by

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  2. Inspirational story. Wish you all the best. Cancer charities are the biggest fraud in history though. The most profitable charity in the US is the American Cancer Council. Must be fairly lucrative here in Oz because most of the cancer charities can afford to advertise on prime time television. When 'charity' is so immensely profitable with very little accountability on where the money goes it is hardly in their interest to find a cure. By all means raise money but donate it to people struggling with the disease or families left to fight to survive when loved ones are lost. I hope this doesn't offend. We did a great shave for a young family in our country town and the money went straight to help them deal with the costs of the disease. Best of luck

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    Replies
    1. Thanks for the wishes! I don't have much to do with charities so I really can't comment on this but thanks for reading and for your comment.

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  3. Hi Kate, my husband has also had his stomach removed but due to him having gastric cancer. That was 81/2 years ago. He had 6 rounds of chemotherapy and is one of the lucky ones as he is still here. Initially he had problems with extreme pain if he ate too much and he would then vomit. He was told its like having a gastric band. He was cut from the bottom of his ribs right down, they even removed his belly button, 6 days in hospital like you. Believe it or not he was eating sandwiches in the hospital. We went home without a lot of info on what he should eat. He went from 80kilos to 60 and atm is 57.8 as he has not been well, he is 183cm tall so is very thin. His great-grandfather also had gastric cancer and died from it so we were very interested to hear your story. It is a very rare disease. We wish you well xx

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    1. Thanks so much for the message and I'm really sorry to hear about what your husband has had to go through. It is great news that they were able to find it in time though and he's survived the horrible disease. Oh wow sandwiches so soon! My dietitians and surgery team have been amazing with information on what I should and shouldn't be eating just to make sure i give myself the best chance of recovery. I'm sorry to hear your husband hasn't received the same type of information. I've been told that adding things with high calories to each meal can be very beneficial to keeping on weight (cheese, butter, cream etc). Thanks again for the message and all the best to you and your husband :)

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  4. hi Kate, my name is Ash and i am a journalist with take 5 magazine. Can you pl contact me regarding the possibility of sharing your story. thanks Ash (asthaabhishek@gmail.com)

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  5. Hi Kate, just letting you know I've linked to your blog on my WebLinks site.
    http://www.simonsweblinks.com/2014/04/beginning-not-end.html
    Cheers!
    Simon.

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  6. Hi Kate, I have just read your story and feel really inspired by you. You are so brave. My friend has started an no-make-up-week campaign. I think it would be great if you could join her.

    http://nomakeupweekchallenge.wordpress.com/2014/03/23/josies-day-seven-smile-at-peoples-judgements-and-just-be-yourself-no-matter-what/

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