Its been a while since I posted anything here. Unfortunately I go through phases where I can focus on this, and phases where I cant. Thankfully nothing bad has happened with my wife, and in fact her latest results are still stable, so in a way that is good news. Though as I have written before, it feels a little like putting off the inevitable, which is frustrating.
The uncertainty doesnt help when planning for the rest of the year. We all as a family desperately need a break. Realistically, the break we need is from the disease itself, but we will have to settle for some time by a pool if we are lucky, and if we can find the money.
I struggle with planning for this kind of thing. I am always conscious of how hard it is to take my wife somewhere. And I know that it is really bad to think that way, and I should give her credit, but I find myself falling into the trap of thinking I would rather we didnt do things, than have to cope or compromise. My wife loved to travel in the days before she was ill, but now my first thought is that she may get sick while we are away from our house, or I selfishly think how hard it is to look after her when she gets tired and needs a rest, limiting what we can do.
So I almost dont plan for this. I leave her to propose things, and go along, dropping the odd realistic expectation in, which doesnt go down well. But there are other aspects of out future I do think about. Usually during a long drive, thoughts will pop into my head about certain things.
I will find myself planning what I will say during my wifes funeral. It is almost an excercise in making myself cry. I will think of different things of her life I want to highlight, and how we will miss her. I will consider songs to play. This is a little morbid thinking about it in the cold light of day, but I think it is all part of the anticipatory grief process, an attempt for my mind to try and cope.
I think about what my future will be like. I desperately want to have a normal relationship. A life partner I can share things with, laugh and joke with, go out for dates with. I found that person, and have now lost who she was, and that hurts. I wonder if I will ever have that again in my life, and when that new life is likely to begin.
I think about my childrens future. My daughter is looking around universities right now, and in just over a year she could be going away to study. I think how she will cope, and how we will cope at home without her. There is a strong possibility that she could go away, and it could just be me and my son living at home, and our family dynamic will totally change. It has always been thinking about my childrens future that has hit me the hardest.
These thoughts can tie my brain up so much that I cannot focus on much else. I am too preoccupied with worrying about the future when things have changed, that I find myself missing the now, not planning for the short term with my wife. In a way it almost as though I have mentally moved on for a period of time.
I have written before of how we seem to live in a constant loop, scans, results, then waiting for the next loot of scans. I guess that the things I mention above are a way to try and mentally break out of that cycle. God knows at times we need, I need to break out of that cycle. There is a guilty, selfish feeling that I am wasting my life, that we have dedicated so long to my wife and her disease, that everything else has become ignored. It is a hard balance to try and keep, between advancing our lives, in the knowledge that my wife may not be able to advance hers, and trying to keep the present going as well.
There is a frustration and resentment that comes to the fore, and these feeling block and take over my mind. I do feel guilty for felling them, and so the self loathing contributes more to the guilt. I know I am doing the best for my wife, and looking after her the best I can, however in the back of my head is the thought that I need to have a future for myself. I need to have something to define me when this phase in our lives has finished, whenever and however that may be.
The one thing that does keep me grounded is music, and I listen to alot. Just this last week I saw Guns N Roses at Hyde Park London, and they blew me away. I had seen them last year, with a truncated set due to illness, but this week they played three hours, and were amazing. A great time, with a really close friend did make me feel better.
The track chosen to share though isnt by them. It is by the Happy Mondays, and is another all time favourite.
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