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What impact has NETs had on your life?
It's hard to explain how NETs has
impacted my life although it definitely has. It's changed me and it changed
others around me too. My son was 3 years old at the time of my diagnosis,
when I heard the word cancer. And my thought was 'he's only 3, I'm not
finished, I'm his mum, this is my job, so I'm not going
That time was a bit of a
whirlwind with appointments one after the other getting ready to go straight in
for a right hemicolectomy. I don't think I thought past what was happening
right there and then for a while. I just focused on getting the right
treatment for me and asking where and when I needed to be next. What's the next
appointment place and time?
Although I think I'd been unwell
for a while I don't think I spent as long on the diagnosis path as some others
There was lymph node involvement
but I continue with follow up appointments and tests to make sure I
remain as, 'no evidence of disease.' Waiting for those results is often a very
anxious time. But so far they've been followed up with phone calls to Mum and
Dad and my husband with good news.
Even indirectly NETs can have an impact. On
the 1st of January this year I was admitted to hospital and had surgery for a
small bowel obstruction and perforated bowel caused by the adhesions formed after the right hemicolectomy. It was
then followed by an infection. But after that start to the year I'm ready for
'onwards and upwards' for the rest of 2018!
What has been most helpful to you in your NET experience?
Honestly, finding The Unicorn
Foundation has been the most helpful part of this journey. Having a rare cancer
means it's unlikely you'll just happen to meet someone with the same condition
in your everyday life. Or even finding someone that's even heard of it and
knows anything about it! So making contact with the Unicorn Foundation
has meant connecting with people in similar situations and/or with
the same aim. That's important for anyone in this situation I think.
What advice would you give to a newly
If anyone is newly diagnosed with
NETs I would say learn to be your own advocate. Educate yourself and others if
needed. Find the right medical team for you. Include in it who you need
Find something positive to focus
on also. Find something you enjoy and make sure you work it into your life as
often as possible. It can be something as little as being active and
participating in runs. Which can end up have many positives in your life, e.g.
health benefits as well as meeting new people and being part of something fun.
Life is busy enough and appointments make it even busier. But focus on the
enjoyable things in life that make you happy. I'm now doing Run Melbourne on
the 29th July for the third year. It feels good getting out there doing
something for myself and in the process hopefully creating awareness for the
Unicorn Foundation and directing some donations their way as well.
couple of mottos I've come by and have resonated with me are: 'Aspire to
Inspire' and 'The glass doesn't have to be half empty or half full. It can be