So I seem to be suffering less today with gas and indigestion after the feeding tube was fitted, I've eaten a little better but not up to my previous standards. I am sitting here typing this now with a touch of heartburn that I know is going to build into trapped wind. Once I have finished this entry I will have to go hit the Gaviscon again. I hate that stuff.
There is a hell of a lot to do to care for this damned tube, it has to be flushed with water every day to keep it clear (even if you are not using it) and there was a load of stuff the hospital went through with me about it too. The port on the inside (in my stomach) has a saline filled balloon to hold it in place, every fortnight this needs to be checked and topped up, once the stitches currently holding stuff in place are dissolved I have to start rotating it every day and once a week it has to be pushed in and pull back. Lovely. This is not the worst part, if it falls out (a rare occurrence, but it happens) then you have to either place it or a spare one they give you back immediate. Yes, thats right, you have to put it back in yourself within half an hour or the hole in the stomach closes up. Nice. Thats really something I want to be doing.
This being said, the more I read about other peoples experiences, the more I am glad to have gotten it out of the way and had it done. You can suddenly lose the ability to swallow, its an effect of swelling caused by the radiotherepy, not everyone get this - but it happens often enough that there is a good enough chance it'll happen to me. Without the tube if you suddenly can't swallow then you are in big trouble - it only takes a couple of days to get seriously dehydrated and then you end up getting admitted to get fluids back and you stand a good chance of being kept in to have the damned tube fitted anyway. If you already have it then its a simple enough case to keep the fluids up yourself, I have already put water in (the nurses and the hospital made me) to make sure I understand the process. There are things to bear in mind, really cold water is a bad idea going direct to the stomach - you get an ice cream headache really fast and really badly - and you have to make sure nothing blocks the tube. I can put my fortified drinks through it, plus things like dissolvable paracetamol (or indeed vitamins - you have to keep these things up, you're gonna need all the nutrients you can get to get over the treatments) or indeed any other medications they give you (like anti-sickness stuff).
OK, the aftereffects of this tube have not been nice - I have felt really crap at times in the last couple of days - but I do admit to feeling a sheepish about worrying about it so much. Honestly, the worst part was the complete balls up they made of getting the cannula in. I'm starting to think the same about the radio treatments too. I've seen the machine, been through a dry run and it wasn't that bad. The after effects are going to be horrible, but I have my mouthwash and I am planning on getting a gel called GelClair (this one will be on prescription - no matter what I have to do or who I have to kick in the nuts to get) which is meant to be really soothing on the ulcers and lesions the radio causes (unless by a complete miracle I am one of the 30% using the mouthwash that just don't get this).
I have even kind of explained the feeding tube to the kids - they have seen the end of it but not where it actually goes into my stomach (I thought that might freak them out a bit). Next step is to go through the treatment schedule and plan out lifts and childcare so that I don't have to do it if I don't feel like it. Plan for the worst and hope for the best. Not exactly the best battle cry ever but I'm too pragmatic for that :-)
