Monthly Archives: May 2014

Another month on and I’m still nowhere nearer to getting rid of these nephrostomies that I hate. Sleeping with them is the worst. But not the worst that is happening to me right now.

I still can’t eat much of anything at all, and it’s really getting me down. Because I really do like my food. I sit here dreaming about food that I know I can’t eat, purely because my mouth and throat won’t co-operate with the rest of me. I don’t know what to do about it and the doctors don’t really know either so it’s back into test territory I go. I’ve lost 11kg in the last five weeks since I was last weighed, back when I was in hospital last. That’s a lot, for me. I’m actually at my ‘ideal’ weight but it feels wrong and I can’t enjoy it because I’m tired all the time and I can’t wear any of my clothes because of the neph bags.

I’m actually trying something new with those; I’m trying them without the leg bags attached. I have to empty them more often, but it’s easier to get around (without two tails) and I have some sense of feeling normal because I can’t physically see them. and more clothes fit me without them. Which is nice. I’m only the second day in and I’m sure it’ll bite me in the ass at the first opportunity by exploding all over me in public, but hey, I have to try to feel normal or I’ll just sit here moping all the time.

But back to the eating part. I don’t understand why I can’t eat. I want the food, it’s there in front of me, I just gag when I try to eat it. Leftover reflex from the hospital maybe? The food in Birmingham was shockingly bad. Surely it can’t still be that though? The hospital are doing some more tests; a camera down my throat, a contrast CT of my digestive system, and an MRI of my head. I’m not sure what they’re looking for or what they’ll find and that scares me because if there is anything there, it’s new. It’s something that has appeared since my last scan in January, or my last PET scan in October.

I’m trying to be positive about it all but it’s hard and all I seem to do is moan. basically because I’m tired of having bowel issues and because I want to eat food. I keep trying to trick myself by eating my favourite things but I still can’t finish anything. Having another go at this tonight which I’m sure will go badly or worse, I’ll be sick at the table and embarrass myself completely. Dinnertime today has been a washout and breakfast was non-existent so I’m counting on tonight to bank my calories for the day.

No pressure, then.