[Chirley]

Hi,

I'm so happy. I was booked in for a routine 2 weekly transfusion today but I didn't need it. My Hb is 113, don't know what my WCC is and platelets 60. Looks as if the Vidaza may be working at last.

Downside is, my mobility is decreasing and I'm now having problems driving as I can't feel my feet on the pedals. I feel unsafe in the shower and think it's just a matter of time until I have a fall. I did have a bit of a stumble last night and landed on my butt on the floor of my bedroom and I couldn't get up no matter how hard I tried. I swallowed my pride and grabbed the phone on the bedside table and rang a friend to come and help me. Degrading and embarrassing. Consequently, my haem doc was concerned (rang the neuro doc) and I'm booked in for another brain/cervical spine MRI next Wednesday and, horror of horrors, a lumbar puncture as well next Thursday. I have always thought that I'd never want a lumbar puncture, just another demon to confront I suppose.

On the upside, I have found out that there are lots of caring people out there. I have been accepted into an organisation that provides transport for people who can't drive anymore. They pick you up at your house, take you anywhere you want/need to go (hospital, doctor, shopping, lunch with friends etc) and drop you home again all for $2 each way. They also provide someone to do the shopping with you and have lunch/coffee etc while you're at the shopping mall.

I have also been put in touch with a home care service who come to your home and check to see if anything can be done to make it safer, e.g. hand rails, new shower etc and then they subsidise the cost of doing any alterations that are needed. The same people also supply home cleaning services where they come in once every 2 weeks and do all the routine housework like vacuuming, mopping, bathrooms, kitchen, dusting etc for $7 a visit.

All in all it feels all kind of warm and fuzzy to know that there are really caring people out there all you have to do is reach out. This disease is starting to feel like I was meant to have it to learn to open up and let people into my life. Oh, oh. Next thing I know I'll be hugging a tree. Sorry to be so soppy.

Bye

Chirley