Most people know a few things about me. I am a mom to two beautiful girls and the wife to a wonderful understanding husband of 17 years. Also that my youngest has a mild form of autism (PDD-NOS) and SPD (Sensory Processing Disorder). My husband and older daughter are ADHD. We also LOVE Sci-F…
Some people also know I have Carcinoid cancer. I have been fighting this since 2006. At this point I will be dealing with this for the rest of my life. As this is now considered incurable.
There is one thing that comes up every year that will consume my twitter account & Facebook account. NET Cancer Awareness Day Nov. 11th this is the type of cancer I fight with every day.
Fighting a well-known cancer is bad enough (say breast cancer for instance) people know exactly what to expect (for the most part). I almost think it would be easier to just say I had breast cancer just because people can relate to it. When I tell people I have Carcinoid/NETS cancer, I have to explain it to them. There is no easy or clear cut explanation to give to people. It is very complicated and different for everyone fighting with it.
It is one of those diseases the medical community has deemed the “The looking good cancer” because even though it will take your life eventually, you will always look relatively healthy. When I tell someone I have cancer I usually get “Wow you have cancer, but you look so healthy.” OK thanks??? (I think??)…. Then I think to myself … You sit tethered to the bathroom for days on end. Not being able to do your normal every day stuff. Add the stomach pain that doubles me over in tears, wishing I could just die. I can’t really explain to someone in a “nice way” what I am actually dealing with, without getting the “TMI look”. Most of the time I will opt out of trying to explain to someone new and say I am just not feeling well. That brings on a whole different response after you have used this excuse on more than a few occasions.
If you are not lucky enough to have it detected before you are symptomatic. Or before you end up with Carcinoid Syndrome the part of it that will eventually kill you. See
Traditional chemo & radiation do not work for this. When I say doesn’t work I mean usually has no effect on it. It mimics conditions such as IBS, Crones disease. Then add with it flushing (kind of just looks like you are blushing only for no reason and you feel as though your faces and body are on fire). A heart rate feels as though it is so fast you cannot catch your breath. Then the asthma like symptoms that if you were to use an albuterol inhaler you could actually be doing more harm than good. It can trigger carcinoid crisis (which is so complicated in itself you need a separate post just for it). However by looking at me can’t see it. Hence the looking good part.