I'M NOT SURE I HAVE CANCER NOW - BUT WHAT DO YOU CALL THE DISEASE I NOW HAVE.

Hi all. I am typing this blog once again from hospital. Am I still in rehab you may ask -no, I am in a real hospital treated for chronic pain. Mid December 2008 I woke up sitting up and not being able to move. Any movement resulted in screaming. Off we went to the hospital and the next thing I remember was Christmas Eve. For 7 - 10 days I apparently spent a great deal of it speaking gibberish and the rest of the time if not screaming in pain I was asleep in an unconscious kind of way.

Apparently I had a great deal of visitors. I also have been told I spoke to some of the visitors in a lucid fashion. This has all left me in the situation where I have yet more pain and a daily procedure of trying to tweak the cocktail of drugs with the aim of having no pain and not being drowsy and off with the fairies. It is not always possible to have the cocktail of drugs that can achieve this.

It seems there was more damage done to my sacrum and that is what was creating the pain. We need drugs and the repair which requires time before we can have comfort.

I guess what has risen though is - what is the real issue, In my case what didn't happen was - I didn't die. The good thing about the disease now is that there are some fabulous drugs keeping cancer at bay. I have had nearly 10years of good health in parallel to having cancer and a variety of treatments. Having a passion for living for me is not that difficult, having a wonderful family and support network are crucial and something I have in truck loads.

Prior to this episode I lost my legs. I went to visit my sister for one night and now we live with her and her family. My son started the September school holidays being part of one school and unbeknowns to any of us he started back at a school on the other side of Sydney. What I am now fighting is paraplegia and intense pain.

What specialist do you need to see? We don't have one. We have pain management and oncology as separate specialists.

Perhaps a new disease has been invented and that is the side effects of cancer when you don't die. We just need a name for it now - but what is it called??