NETS has hugely impacted my life…going from a full and hectic life, of designing objects and exhibiting our art installation works and jewellery, everything had to stop so I could just focus one day at a time.
My diagnosis with a pancreatic neuroendocrine when I was 36 was out of nowhere… More recently my auntie has been diagnosed, and family discussion have identified a distant cousin as well. This has now had a larger impact on not only myself but my larger family, and made us more aware of our health.
For approximately seven years, my health continued to decline and impact on my quality of life, my career goals, my social life and my own self belief. I was diagnosed at age 29, and two days after my diagnosis I found out I was pregnant with my first baby.
Keep a journal and or diary to write all of the very many questions that will pop into your mind. Take this to every medical appointment and where possible also take a “buddy” to take notes so you can focus & not stress about forgetting valuable information.
It is impossible to explain to you in words how a person can be perfectly healthy one minute, then violently ill barely half an hour later, then admitted to Hospital within two. But that is exactly what happened to me…
Although feeling very disheartened at my future after diagnosis, something changed in the way I approached it as time has gone on. I decided that I was not going to be defined by this condition. It is a small part of me; I am NOT part of it.
I was first diagnosed with NET’s in October 2010 after the discovery of a mass in my pancreas. I had been unwell and lived with symptoms for about 4 years and for a while I actually thought that I might have ovarian cancer as the symptoms were very similar (according to the adverts on TV).
It was New Years Eve 2010 when this ultrasound showed I had spots on my liver and a follow up CT scan that day showed a mass on my pancreas. While people around me prepared for new years eve celebrations I was trying to imagine how my boys would live without me and how my wonderful husband would cope with it all.
Our eldest daughter Tayla had an ultrasound, MRI and CAT scan just days before, all which detected a mass in her abdomen, this warranted further investigation by the hospital. Even more bizarre was the fact that she had found this lump herself.