The bloating/Ascites is as bad now as it ever was. Yesterday I spend the whole day horizontal mostly, because it is more comfortable that way. Today seems much the same so far. I will try to make this post brief, s oI can go lay down again. So, sorry to those who have emailed me and I have no written back.
My GP is trying to organize a pain pump for me, basically morphine on tap. I'm not sure if I want it because it will mean being tethered to a device. The plus is, I suppose, that it is one less goddamn pill for my failing liver to try convert into my bloodstream. Also it allows the pain control to be faster and more efficient.
My whole sense of taste is gone. Everything that even has a touch of salt in it seems way too salty to handle eating. Really nothing tastes as it should anymore. I get cravings for food, and then when i try them that always disappoint. I am hungry and thirsty at times, but as soon as I eat or drink my bloating gets that much more painful which pushes a strong negative feedback not to consume anything at all. On Sunday, I was not too bad, although I didn't eat much all day until dinner. Yesterday was terrible.
I feel I am in a small sailing boat in the ocean, with the mast broken, with storms and waves tossing me about in the dark. I have no idea if I will die this week or in 5 months, or even that tiny hope that I will recover (If the Tarceva is doing anything useful). This limbo and not knowing is hard. It wears me down.
I am signing up for Expected Death in the Home (EDITH) - staying at home is my strong preference. After that there is a palliative hospital called Parkwood which I would prefer over being in the actual hospital. Staying in the hospital has become torture for me - I will fight as much as I can to avoid it.
Sorry that this post has been depressing. I am going to lay down now.
