Over the years of my advocating, I’ve tried to explain Neuroendocrine Cancer to many people outside the community. Some ‘get it’ but many don’t. Most understand ‘Cancer’, they have real difficultly understanding ‘Neuroendocrine‘. Despite how hard I try, I can see that some of them just don’t get it!
One of the challenges of explaining Neuroendocrine Cancer is the sheer complexity and spectrum of types. It’s a heterogeneous grouping of cancers ranging from some quite indolent versions through to very aggressive versions similar to many dangerous adenocarcinomas. Unlike many of the more understood cancers, Neuroendocrine Cancer can literally appear anywhere in the body, adding to an already complex description, in addition to creating a disadvantage of awareness opportunities because of the use of incorrect cancer types, clearly many doctors and media organisations don’t ‘get it’ either!
Add in the symptoms caused by Neuroendocrine Tumours and their associated ‘Syndromes‘ and ‘Hormones‘, the external audience is now falling asleep or lost interest. Trying to explain why these diseases cannot be diagnosed earlier is also very complex. “How can it be so difficult” many of them ask.
If you have managed to keep their interest and get onto the subject of living with the disease, it gets even more mind-blowing. Non-stop surveillance, lifetime surveillance, permanent side effects of treatment. “No way” many of them remark. The problem is that many people have a really simple outlook on cancer; something goes wrong, you get diagnosed, you get treated, you either die or live. Simple isn’t it?
One group that normally ‘gets it’ is those who have currently got it, i.e. Neuroendocrine Cancer patients and their close families and supporters. They may not ‘get it’ before someone is diagnosed and they may still not ‘get it’ once someone is diagnosed, but they eventually will ‘get it’. I have many people who ‘get it’ in my private group and on my main campaign sites.
Despite the difficulties, I’ll continue talking to those who have not yet ‘got it’ hoping to make them understand the disease. I also intend to continue to help with the undiagnosed (some of these guys probably do ‘get it’ but just not yet formally ‘got it’). I also want to help those at and beyond diagnosis who despite having it, don’t yet quite ‘get it’.
No one gets it until they get it. It shouldn’t be that way.
Thanks for reading
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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!
I guess it depends if you care that much who understands what you’re going through. Some ppl just wanna do what they have to do and get on with life. Like ok, I have cancer, but it’s not my life. Some ppl have MS, some ppl have lyme, some ppl have side effects from their “regular” cancer. We all go through things, but those things don’t have to be who we are. Until they do have to and even then, it’s just a space in time and we move on one way or another…
Agreed.
Excellent article conveying the sheer frustration of this insidious disease. A pleasure to read.
One of your better real life situations posts, Ronny! Thank you once agin for putting our thoughts into words!