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has NETs had on your life?
NETs has definitely changed
my life. I went from being monitored for MEN1 from the age of 12 so was used to
blood tests and scans and seeing specialists but routinely rather than rushed
or just told to do something without much explanation. I went from a CT to
surgery in a very short time. Primary was Pancreatic. I was one of the few in
the country who had a distal
pancreatectomy done with my surgeon using a robot. With that came questions, no
one seemed to be able to answer, including the surgeon who was renowned for his
work. I trusted him but unknowns are hard for most people really. Sometimes the
Doctors heard that I worked in Health and assumed I knew more than I did so had
to ask for a better explanation. I didn't even know what a Gallium 68 scan was
until people helped me understand on the Unicorn Foundation site and Facebook
group. I’ve had more time off work than ever in my working career and
after surgery it took a long time to get back to full time. In fact it was 6
months, and that came with complications. I had a pseudocyst diagnosed which
was the complication. Between the diagnosis, tests, stents being put in and
then a blockage, I’ve seen far more hospital than ever and I work in
one. I have less energy, and feel like each day is a push to just get
through. What has been harder than I expected is that people see me and “think”
I am well. Invisible illnesses are seriously a tough road as people assume you
are well. Emotionally, its been a rollercoaster ride but I am fortunate in my
beliefs and write a gratitude list every day to remind me that there are still
good things happening even when it feels like things are tough. I have an
amazing life partner who has been by my side every step of the way and my Mum
has played a big part too. I’ve been hit hard in a short time but I have an
amazing network of support which is ultimately the thing that holds the glue
been most helpful to you in your NET experience?
The Unicorn Foundation would
have to be the one place that I know, with certainty, I can rely on for information,
help of any kind and direction to where to find answers. Kate is amazing, she
is kind and understanding and although she probably answers the same questions
so often, you wouldn't know it. Her compassion is something that I am sure
everyone would agree is a beautiful asset to have. The other thing is the
Facebook group for Unicorns. People are supportive and informative in a way
that makes you feel comforted and surrounded by love. I can honestly say
anything and ask anything knowing it’s a safe place to share and not be judged
or looked at sideways or even bullied. Whilst those outside the home
supports are absolutely necessary, having family and friends has also been a
great foundation to go home to. Knowing that home is safe and I am able to just
be whatever it is on that day is also helpful in the long journey. The thing
is, this never goes away. I have had one surgery and now have just found more
tumours on my pancreas and I know I have a pituitary adenoma so things don't
just stop once they remove x or reduce y, it’s a forever thing.
I am fortunate that my
immediate Manager at work is also supportive as its important for me to
"get back to normal" in some form when I am able to. Getting away
from "health" that is constant is important to just take a break.
Ironically, I work in health so at the moment, not much of a break but my job
is also important for me to feel like I can contribute to my home, my patients
and the staff who work for me.
would you give to a newly diagnosed patient?
Don't panic. I panicked at
first. The word cancer doesn’t mean the end. I had a tonne of questions and
needed them answered NOW. Nothing will change in the 24hrs of not having all
the answers. Take time to breathe, talk to others who are in the same position
to get a better idea of what lies ahead and whatever you do, don’t use Dr
Google, it will only make things harder to understand. Use online tools sure,
but make sure they are reputable articles or from a source that is reliable.
Make sure there is time for you, just you, to reflect, or to enjoy life.
I have just decided to teach myself guitar as I needed an outlet and due to my
physical energy wavering at times, I am sometimes just too tired to do the
things I used to do. So I have found a new creative outlet. Getting things out
of your head and onto paper, out to another person or any other way is so
beneficial to anyone starting to go through this. It’s not easy but it is
definitely something we can all get through. You, newly diagnosed person, will never
be alone on this journey!