I found myself sitting here falling into floods of tears, for what feels like no reason. I was fine until the district nurse called, it was the one that I really like, although I can’t tell you her name, so nothing new there then. She was the one who came to see me first, to talk through the whole process of them coming here to give me eneama’s and to help me with the problems I had then recently started to have with my bladder. I have seen her a couple of time since then, but following that gap and after the news I had from the continence nurse the other day, I decided to update her. When I started to tell her about the possibility of having a permanent catheter, the tears suddenly started to flow. I didn’t expect them, as there hasn’t been a single one until then, but with the door opened, they have just kept reappearing without permission.
All of this intervention and changes that are underway with my carers, plus the feeling that I am losing more and more of my abilities to live normally, just suddenly became too much. I know that right now, nothing is definite and in many ways that in itself, is making it all the harder. Right now, I would love someone to just say this, this and this are happening and it will all be done by such and such a date. As I said to the nurse, I hate the fact that it is up to me, to make the decision as to if or if not I have a stoma. All this fiddling around with eneama’s which work sometimes and not others is starting to get to me. If it were as simple as them pushing the liquid in and I sat on the loo and everything just left my body, then great, but it’s not. Again today it failed, nothing other than a couple of tiny blobs that must have been sitting low in my guts. The bulk, the bit that has been sat there for two days, causing me discomfort and even pain, didn’t shift at all. Of course, we didn’t know that was what was going to happen when we were talking. She had asked me if I had an appointment to return to the hospital, which I don’t, I told her that as far as I knew, it was now up to me. If we didn’t get a result with the eneama, good enough to leave me comfortable, and if I decide that I can’t handle things any longer, then I will request a return appointment, to give the go ahead with the stoma. She said that she was going to check the letter from the doctor, as she said that she felt that there should be some kind of follow-up.
Having gone through all the disasters of the eneama’s failing, and the fact that I am still finding myself no further forward in getting rid of the pressure and the pain, I agreed that it was time to try a change. Although it was something I don’t really want, from the point of view of having space in my life for other things, like being me, we’re stepping it up to three times a week. Monday, Wednesday and Friday, if that fails, we’ll go for every second day, which is what the consultant wanted, but not my GP, the district nurses, of myself, who all felt that was just too much. We have to try everything as a stoma, is the final step, one that I don’t want to take, if, something else could mean I could avoid it. As I said the other day, I believe that my bowels are behind my bladder not wanting to empty, so it could be a fix for both. No, I don’t want a permanent catheter either, if it can be avoided.
When she left, I was still lying in my bed, with tears rolling down my face. It was me who told her to go, I felt able to get off the bed and to go by myself to the loo. Keeping her there, felt like another pressure that I didn’t need, as I knew she had many other people to see. She double and triple checked and assured me that if I needed her to stay, she would, but with her gone, the tears then flowed freely, without the restriction that I was putting onto myself, of not wanting to cry in front of her, for what felt like no reason. I lay there for about another ten minutes before heading to the loo. I already knew that nothing was going to happen, I had had the eneama inside me for twenty minutes and I felt nothing. I pulled myself together while I sat there on the loo and told myself to stop being so stupid. It kind of worked, if two or three times an hour escaping liquid running down my face, could be called working.
I don’t know why I suddenly feel as though I am under pressure by all of this. It’s not like anything has really changed. Maybe, it is a psychological change that is needed. Maybe, I need to start seeing my eneamas as routine, not as something that is there as some sort of demand to perform. I’m not stupid, I do realise that it is the fact that I have the final say when it comes down to the stoma, that is getting to me. I so wish someone else would stand up and tell me what to do. I just don’t feel that my mind is in the condition to make such a huge decisions, as it feels like it should be a purely medical decision, but I also see that it can’t be. The continence nurse saying there wasn’t a safe amount of time to have a bladder that didn’t want to empty, hasn’t helped either. There must be a point when it changes from safe to dangerous. I don’t want to call for an ambulance for my bladder to suddenly empty by itself when I reach the hospital, just as it suddenly let go other night. I don’t want to even have to go to the hospital at all.
The district nurse phoned me in the afternoon, as she said she would. What I had said was totally correct, the decision about the stoma is all up to me. I admitted to her that I am at this second in pain from my guts, she rightly said to me that it’s a long time to Monday, so one of them is going to be here tomorrow, to try again. Maybe tomorrow, it will be totally different. Maybe tomorrow it will work, and maybe tomorrow I won’t have to worry about all of this ever again, which tomorrow that is, I don’t have a clue.
Please read my blog from 2 years ago today – 06/08/2014 – I’m still here
Two Rooms Plus Utilities 