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It's almost two years now since I was given the diagnosis
of Neuroendocrine cancer and yes it has changed my life dramatically. John and
I were about to downsize and enjoy our retirement in a new area and despite the
constant rounds of Doctors, scans, hospitals, blood tests and treatments we are
doing just that!!
I was very shocked that this rare complicated incurable, inoperable cancer had
been slowly growing for years and had metastasises in my bones with an unknown
primary never having been detected despite years of IBS and other bowel
A year later I was coping well with the regular Lanreotide injections, pain and
discomfort, I didn't have the carcinoid syndrome and tumours in my spine were
stable so this was all good news.
Then suddenly things changed as they can with NETs. New tumours found
were more avid, so the grading changed another treatment was introduced and
blood platelets started going on a roller coaster ride just to make things
I am so thankful for the help and support on this journey not only with my
wonderful family also with the amazing Health Professionals, Multidisciplinary
teams, the Unicorn Foundation and the information and web cam programmes so
readily available. The regular support
group for patients and Carers with informative speakers and forums not to
mention the camaraderie and social interaction with people who can empathise
with you. I also find our faith a positive outlook and a sense of humour
helps John and I to take the rough with the smooth.
If you are a new NETs patient I say welcome to the band of Unicorns, you are
not travelling this journey alone there is help and support. My advice is to
ask questions about anything and everything and write things down. It's also good to have a support person with
you on oncologist and treatment visits.
There may be days when you just want to let off steam, stamp and cry at the
unfairness of it all, just try to hold on to the good days be kind to yourself
and keep the “glass half full”. There is always a light at the end of a tunnel.