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 anywhere.’
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 with NETs.
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 NeuroEndocrine Cancer Australia 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 NECA 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 diagnosed patient?
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 to.
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 NeuroEndocrine Cancer Australia and directing some donations their way as well.
A 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 refilled!’