pissed off!

1^st December, 2007

I cannot believe it is DECEMBER! Where has the time gone? Feeling pissed off today, I wish that I could just go out as normal. I am gaining more confidence in being able to do things for myself, like washing etc. This bloody cancer is just ambling along as it has been for years, which does make me wonder if I have several months of this, so I may as well get used to it. I think when I know what the plan is regarding shared care between here and Juliet’s, it will give me a sense of belonging – in particular, as my stuff is all at Jue’s, and I love that room! I also need to think of a project to do, like work with cancer and dying etc that could be used in teaching at the Uni maybe – after I have done the photo album for Dad of course.

It is so hard adjusting to life where I hardly go outside, due to a lack of mobility and need for oxygen, but also I have lost all my confidence and this is something I need to work on as I do want to be able to live a little. I do seem to be a lot more with it, but I am not sure if that is because I am here at the hospice where I know there are people all around, whatever it is, I am feeling a whole lot better.

17:00 – It happened again, I became very short of breath and needed to open my bowels urgently. Thankfully the commode was near by and I recognised I was anxious and managed to do a large poo! (sorry) whilst doing breathing exercises through my O2. I have a feeling this has something to do with an autonomic spinal reflex and the spinal secondaries are causing a response. I also get a searing headache at the same time. I just need to make sure that I open my bowels regularly and keep the commode near me. Now I know there is a link between the SOB and bowels it makes sense and has reassured me it was not my lungs that are causing the problem, although I do still need the oxygen as I get short of breath on exertion. I am frightened I will suffocate without the oxygen, which is a huge overreaction, but I just can’t help myself.

22:00 – I am all padded up and ready to go. Dreading going to sleep again due to being incontinent. It just feels so degrading, and I also don’t want my skin to breakdown and become sore. I’ve been started on a new drug, which is supposed to help, but I am not sure how long it takes, I had the first does yesterday, with no joy. I am able to control it in the daytime, but may have to wear a catheter in the future, if I lose complete control.

I never did go back to the Royal Marsden, maybe I should write a let them know what happened. I don’t think they would have been able to do a better job at this stage of the disease, anyway.