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Jan Tinkler 

 

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 problems!!

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 interesting!!

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.