The future I don’t want

Every morning before I start writing, I always set up the link at the bottom of the page to the post I wrote 2 years ago. Usually, I just sort of scan it, enough to remind me how I was feeling then and what was on my mind, there have only been a couple of occasions where I have found myself reading the whole post and today was one of them. Bizarrely I touched on the subject yesterday, without realising how close in time I was from the first post I wrote about the decisions and effects of a possible cure. It was one of those posts that I released on the world and sat waiting for either confirmation about how I felt, or to having a load of people telling me I was as nutty as nutty could get, to my relief, I found I was far from the only one and I wasn’t the only one scared by the whole idea. I think we often have thoughts and feeling that for most of the time we walk around keeping silent about and just hoping no one can read our minds, for me that has been one of the beauties of writing as I have had an outlet for those crazy thoughts and normally, well normally I have been proved to be not quite as mad I thought.

Strangely I still do have thoughts that I hold onto, that I don’t write about as I still have that fear and self-doubt that what I am saying is somehow wrong or too much to actually put into words, either because they are raw or just that bit too personal. For those who have read from my first post on, well that may come as a bit of a surprise, I know even Adam has been shocked not just by what I have said but by the fact I am at ease enough with life to actually write about it on such a public platform. To be honest I often forget that this is public, that there are people out there reading my ramblings and getting to know about everything in my life and my mind, which to me is only a good thing and a lot easier than having to see a shrink. I have said it to so many people but I honestly think that this is the best therapy in the world for when it comes to getting through the tough times in life, I just wish it had been around far sooner in my life when there were other things than my health that I was totally screwed up about.

What I read this morning brought up an issue that has been racing around in my mind now for a while and once again it isn’t the easiest to write about, but I have decided to give it a go. I did kind of hint at it a few weeks ago when I was talking about the fact we should all think beyond just our own health when it came to the cost that is put upon the NHS, I said then that not all treatments are appropriate when it comes to giving someone a handful of months to live when the same money spent elsewhere, could make a far huger change to someone else’s life. In a way that is wound into what I am going to say now, but it isn’t the full reason. Last year I was given a time cap to my life due to the fact I have COPD and that my MS is also slowly closing down my lung function, they told me that I had 10 years to live. Getting that kind of news makes you think and my short term thought on it are well documented. With it being nearly a year well trust me there has been a lot of thought between then and now. I guess that most thought that I might change my view on smoking, I haven’t, I still believe that no matter what I do, I am dying, it is only a matter of time that either my emphysema is going to get me or the MS will, one of the other will stop me breathing forever. No, what I have found myself thinking about is more far-ranging than that.

To put it into context it actually started a couple of months after I got the news of my COPD, I was sat here when I suddenly felt that there was liquid on my left breast, almost as though I was leaking, so I took a look. What met my eyes would probably have scared the hell out of most women but I had some history that took all the fear away. My left nipple was split open, as though someone had placed a razor blade on one side and sliced into the middle. There was as I expected a yellow liquid and one clear drip of it in the middle, I cleaned it, spread some savlon around it and held it back in place with a tissue and tape. I was scared by it as I had two occasions in the past that told me what had happened, the worst one for me was when a visible lump appeared below my nipple, I went to the doctor and he could see it too, but as he touched it, it vanished. It was nothing more than blocked ducts, just as I knew the most recent one was too. I have to admit that I did find myself thinking the “what if” trail that naturally appears in all our minds when something odd happens, it was a what if thought that I took several months to think through and be sure of.

Whatever happens to me from now on, there is only one thing that can’t be changed, I will be dead within 10 years or so, if I were to be told that I had cancer anywhere not just in my breast what would be my reaction and what would I be prepared to do about it. It’s a big question, but it actually for me has only one answer, I would do nothing. Yes my view on costing does come into this, as well treating the dying, who will still die regardless just doesn’t add up to me as money well spent, but it is so much more than that. I am already ill, so ill that there is never an hour even when I feel truly good, with such a limited time ahead of me, do I really want to spend even one day of it going though chemotherapy and radiotherapy, no I don’t. I know this is a huge step up from what I have already said not just here but to anyone, including Adam, but the more I think about it the more I know that I want to be as well as I can be for everyday that I have and if that means that I might cut those 10 years, sorry 9 now, down to even 5, well the fact that I enjoyed those 5 years, would mean so much more to me. It isn’t fear of the treatments, I have had chemotherapy before and I reacted very well to it, other than a little nausea, I didn’t loose my hair or anything else. What it did do to me thought, was to make me paranoid about catching any bug that was around, I was uptight and freaking out on the inside, as to what might just happen.

One of the big factors in my decision is also in yesterday’s post, I am already so weak that life is difficult, add in an aggressive treatment for another condition, well I would be bed-bound and probably hospitalised as I would be incapable of coping, even with Adams help. The more that my MS is taking away from me, the more that I know without a doubt that one more thing, would be just too much for me. I don’t want to die, but neither do I want to live in a near dead state. I also know from what I have read and my own experience that even doctors don’t want to treat someone like me, hence the fact my gallstones are happily still tucked up inside me, rather than removed and in the bin. I am already dying, but I still want to live what is left without going through treatments that would make me worse and at best would take away one year of health during treatment, and give me nothing back in life at the other.

With luck, none of this will ever happen, but it is something that I have to think about and I honestly think anyone who is chronically ill should also think about, just in case the worst actually does happen.


Please read my blog from 2 years ago today -23/05/12 – Some issues need thought

Last night Adam and I had a bit of a disagreement over the TV program we were watching, it wasn’t anything like an argument as it was one of those conversations that I knew instantly we were never going to agree on, so I changed the subject. I am sure we have all been at that point and just known that the best thing to do is not pursue it but that doesn’t mean I have stopped thinking about it.

We were watching ‘Holby City’ I have watched it from the first program on, you would think that with my lifetime involvement…..