That Grey’s Anatomy episode..

Yeah, this one, the one with the three siblings and their CDH1 gene mutation, causing HDGC, that aired on March 12th.

The subject touches me of course, and I felt sappy for the most port. I did, however, nearly died laughing at some bits. 'anal leakage' for one (say what?). The following sentences, uttered by the characters also made me frown:

* 'I just didn't think it was such a big deal!' (upon learning the side-effects of a total gastrectomy). Did these people not look into it at all? They take out your flipping stomach, what do you expect?
* 'If you have the surgery, you can never have sugar again' (or something along those lines). True, you should moderate your sugar intake and some respond strongly to it, but it's not impossible. I can eat candy, throw sugar in my tea and sometimes sip on cola (for the sugar rush).
* Without trying to spoil much, the diffuse bit of this condition means you don't have one big lumpy tumour in your stomach. It usually takes days for pathology to come back with the report on your sliced up stomach. But that doesn't do too well in the drama-area, I guess ;)

The women also looked pretty good post-surgery. Just one tiny tube. Maybe I just got the wrong straw with those two tubes in my nose, one in my back, my arm and a catheter (woopie!). They could have shown more of course, but the show isn't about CDH1 and HDGC, so I guess this type of exposure is OK.

Most people don't even know you can (fairly easily) live without a stomach, maybe this will help. Just too bad they didn't explain dumping syndrome a bit more, as this usually becomes the most debilitating part of a TG. If you look it up it'll say 'nausea, vomiting, cramps, abdominal pain, diarrhea' for early dumping and 'sweating, fast heart-rate, weakness, feeling tired, or mental confusion' for late dumping. It sounds so very simply, but trust me, it's not your regular discomfort. Though these days I know how to handle it better, the late dumping wears me out. The past few days have not treated me well on that area, though the symptoms stay mild (I can still function, but I have pain, nausea, fast heart-rate, foggy head etc, which complicate things).
Because most people don't know anything about this, they'll do the wrong things like offer food or water (when I have dumping the smell, sight and even thought of food makes it much worse, plus I can't drink water and drinking will make it worse, as dumping comes from food passing through to fast). They'll think that because you can eat a larger portion one time, you're okay, or you can eat that much all the time. (No, I can't, larger portions that seem normal mean I have a rare good moment.)
They don't understand I cannot skip meals, I really have to eat 6-8 times per day (I go for 8, the manual says 6). Or that if things go wrong, they really go wrong and it takes the rest of the day to recover. If you know me personally, and you think it's all going well, remember that you only see me on my good days and even if I look bad or ill at the time, it is still a good day cause on the bad days I don't go out. And I still have more bad days (or mediocre days) than good days.

Having said that, things don't go too bad (I'm at home, not in the hospital on a feeding tube), I'm just still very much in my recovery phase. I struggle daily to get enough food inside to maintain my weight, never mention gaining some of those 60 pounds back (no, weight-loss is most definitely not a good thing). Most of the time I hate food and eating, due to the problems it brings. The meal/menu-planning may help, but not liking food does not make it easier to pick foods to eat for the rest of the week. I live alone, so I have to do all the cooking myself, and cooking itself sometimes brings on nausea. Getting ready to go somewhere (without known food) takes about 2 hours, cause it includes things like walking the dog, cooking food, preparing lunchbox with multiple options, fill thermos with tea & milk, pack meds and food and such into backpack. It takes longer because I can't rush. Can't eat when I rush. Can't easily grab a snack on the go, or rely on any random restaurant for food. I have to bring my own and that takes preparation and preparation takes energy, of which I don't have much to begin with. It's all about the spoons...