They say when you watch something, it never does what you’re looking for. Well, mine eventually did. I’ve been staring at the phone on my desk, willing it to ring, for the incontinence nurse to call me and let my know what her boss said. When she did, you would have thought that she was reading out the results of some sort of competition, giving me all the points that they took into consideration, before just telling me what I wanted to know. They have looked at all the scan results and my history and present problems, especially those being caused by my intestine and bowels and for now, they don’t think that I need to have any form of a permanent catheter. What they want me to do is to be careful to be sure that my bladder is as empty as possible whenever I go to the loo. This means that I have to double void each time. For those who don’t know what that means, I have to stand up and move away from the toilet for a minute or so, then return and try again. I also have to use a method I have already been using for years, to rock gently side to side and back and forward, which as I knew already, makes the urine move out of it’s hiding spots and out of me. They believe that if I continue to do this, I should be alright until the problem with my bowels is sorted, when hopefully, the problems should lessen. She once more added that if I do find again that I can’t empty my bladder, then I must call for medical intervention immediately.

I didn’t tell her, but when I spoke to the district nurse on Friday, I had talked through with her, the reality of implementing her final point. She was just as I dumbfounded by the idea of calling 999, within minutes of finding I couldn’t empty my bladder. We talked it over and quite rightly she agreed with me that that was just not a viable plan. I can with ease sleep for 13 hours without once getting up to go to the loo. Therefore, my bladder, nor I, am in any type of danger for that length of time. That is, of course, as long as I am not in severe pain. As she said, I’m not stupid, I will know in myself if I need help or not, but maybe that guideline of 13 hours, should be my max. I am also not stupid enough to leave it any longer than that, as I am well aware that urine can turn toxic to my body with ease. Which is a problem for anyone, but for someone like me with a compromised immune system, something I need to be careful about constantly, hence the double voiding. Should I feel at all that I need help, then I should call NHS 24 or my doctor for help. There should be no need for me to be dialing 999 unless I know something is horribly wrong. Both NHS 24 and my doctor would be able to send out a district nurse armed with a catheter to my assistance. After that, well then we can talk it all through again and possibly include a detailed chat with a urology consultant.

I have come to the conclusion that the continence nurse who has been coming to see me, just likes to scare people. There was no need what so ever for her to have worried me the way that she did. She could quite easily have left here without saying a word about permanent catheters at all. Returned to her place of work and talked it through with her boss, then telling me, exactly what she did, when she phoned me. If she had done that, then I wouldn’t have landed up feeling as I did and I would have had a much better end to my week. I have learned one lesson from all of this, should I see her again, I will not let myself be wound up until she has checked her “thoughts” with someone else first.

I have to admit that I have been lucky and I haven’t come across many like her. On the whole, the medical profession has always told me their thoughts, but done so in a way, that it felt like they were imparting information, not telling me that there was no other option when there was. Just like the consultant who I saw about my bowels, he laid out all the possibilities, what they could and they couldn’t do and what they thought needed to be explored first, hence the enemas. Even though I left there knowing that this was the last possibility, but at the end of the day, if I couldn’t cope with it, the final option was down to me, I could request a stoma. When I left there, I felt a little shell-shocked, but I didn’t feel as though I had lost control. In fact, it was the total opposite, and it left me with a new problem, when and how to make that decision, and I still don’t know how to do that.

It took me many years to realise that the medical profession doesn’t have all the answers. What they have are possibilities. In an emergency, they make the decisions for us, but when it comes to those things that aren’t going to kill you in the next ten minutes, the choice suddenly becomes ours. No one can do anything to you without your permission, that’s clear as you always have to sign those disclaimers, but there are times when you want them to tell you, not suggest to you. About three years after I was diagnosed, my health was so bad that my Neuro offered me chemo. It was all explained to me, how it would affect me and most importantly, what they expected it to do for me. What they were offering me, was a way of turning back time, they could say how well it would work, or if the results would be long term, or just short, but it was the only option there was. To me, that was an easy choice. Without it, I was heading downhill so rapidly that I would have been a vegetable long ago. It didn’t feel like a choice, it was a no-brainer. Everyone wants to live, to be able to function as a person. I wasn’t going to say no, if I had, I would have hoped that they would have sectioned me and done it anyway. Where I am now, is totally different.

If the enemas work properly, they will not only move the faeces out of my body, but they will remove the pressure and pain that I live with daily. The short spell I had last month when it appeared it was working, I found a new appetite for food, I could breathe with far more ease and both the pain and pressure were gone, even my mood improved. It was wonderful. Now, we’re back at the start, it is as though none of it ever changed. If I have the stoma, well it removes the problem of getting rid of the faeces, and hopefully the pressure, but there is no guarantee it will change the pain in any way. The pain is caused by my nerves and removing them and my intestine, might not change the pain at all. I will also spend the rest of my life with a bag attached filled with poo. How do you choose?

This week, we’re stepping the enemas up to three times a week, if that doesn’t do it, I could have them every second day. How many weeks or months is a fair trial? What if they never give me the result that I want? Am I asking and expecting too much? When do I say enough and if I do, will I be any better off? This isn’t a no-brainer, this is a brain destroyer.

Please read my blog from 2 years ago today – 08/08/2014 – The small things

Once again I crawled off to bed at 8:30 and slept all the way through, which of course leaves me with a problem as to what my new drug routine is doing, as every night I have taken my drugs later, I have gone to bed early. Now that doesn’t make any sense to me at all, surely not taking my drugs should make me want to go to bed later not sooner, as I have shifted my routine and once……