I sat last night on the edge of the bed and tried to talk to Adam about what the doctor had said to us when we were at the hospital on Tuesday. I was hoping that he would be able to see it from another angle, to give me something to work on, or believe. I tried putting my understanding of what was said in several different ways, but all of came to the same point. “That we had been told there was nothing they would do, as they weren’t prepared to operate on me, for anything other than a total emergency, and therefore, I was on my own. It wouldn’t matter how bad things got, how much pain I was in, or anything else. They quite simply wanted me to take more and more Morphine, to try and cover the pain, until I died.” He annoyingly just kept saying the same thing, “I can see why someone might have taken what he said that way”, then went silent. Even when I pushed by saying things like, “Well, is there any other way of seeing it?” He just sat there silent, offering me nothing at all. I could come to no other conclusion than, he had also taken it that way, but was desperately trying not to say it, because if he did, he would then have to admit, what was happening.
This is where Adam and I are so different. I don’t have a problem with saying that basically, I am being left to die. My guts are being expanded every day because the nerves won’t push the stools through, it just compacts them until everything is pulled tight. It has become increasingly painful over the last 4 years since it started and like all skin, there will be a limit to how far it will stretch. If any part of it fails, well the issues of a perforated bowel, are something no one wants. It is a fact that more and more nerves ending die daily throughout me, the time will come when those in my gut, are diminished to a point that they won’t trigger enough muscles, to do anything worthwhile. But long before either of those things happen, I am going to find it increasingly hard to breathe. I already have problems thanks to the pressure from below, pushing upwards on a weakened diaphragm and lungs, which have their own issues with dying nerves. It doesn’t matter what the doctors want to do or not, I am dying. On Tuesday, they just added another way that it might happen, that I hadn’t quite grasped. So Morphine, here I come.
I had thought that Wednesday was going to be just a day. The carer was due here to give me a shower, but having got through last week, I was feeling much better about the whole thing. I haven’t exactly been thinking about their visits, but slowly, whenever I found my thoughts in their direction, I was gradually feeling calmer as the days ticked on. Even when I started laying out my clean clothes and making sure all that was needed, was on hand for her arrival, there was calmness that was totally missing from last week. I guess that our brains work on these things without us even knowing. As the day ticked on, I have to admit there was a slight apprehension that grew, but it was just slight. I kept myself busy as always, but as 4 pm arrived, so did my first attack of nerves, nothing over the top, just enough to know it was there. It wasn’t until much later when Adam came home, that I found the perfect example of what had been happening to me between 4 pm and her arrival.
Adam is the sort of person, who if he is expecting someone to call, reacts to almost every sound from the road outside, by standing and staring out the window, to see if it is them. Clearly, I’m not going to keep going back and forward, I’d be exhausted, but I still do the same sort of thing internally. So here I was, sat here, winding myself up every few minutes and being ready to head to the intercom to let her in. I waited and waited. 4:30, 5 pm, 5:30 all came and went, and no sign of her, just me getting more and more stressed. Then the front door opened, 6pm and Adam was home from work. He took one look at me and knew exactly where I was, on the point of tears. He made a phone call, but only managed to get connected to an answerphone. Adam was furious in front of me, but when at 6:30 the doorbell rang, he became his usual amiable, jovial self. Two and half hours late and there was the carer as though nothing had happened. She said that she hadn’t been told about the need to be here at 4pm, but I found that hard to believe, as Jane, the carer who was here last week, knew all about it. By that point, I was so tired, so wound up and totally unable to even think about going in the shower, help or not.
Adam eventually spoke to someone at their office on Thursday, and they too said that the stress on timing, hadn’t been passed on to them. They have also reassured him that this will not happen again and that I will be seen as near to 4pm as possible. All we can do is wait and see what happens, but right now, I’m not exactly filled with optimism.For weeks now, I have been searching for the point where life will just feel normal, not stressed, not tied up in things to do and I can just have what feels like a restful day. Somehow, I don’t see that happening anytime soon.
Please read my blog from 2 years ago today – 18/06/2014 – Home to Mother
Teressa called last night to let me know that she and John will be here at the beginning of August for a week. I guess we will be able to spend quite a bit of time together as unlike Christmas the rest of the family and friends in Scotland will be working. She always sounds so happy these days, not like when I would hear from her when she was married to her first husband, then she always sounded…..