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April 22, 2004
So What IS Happening?
Many people have been asking what's the latest, and since it's not always clear, here goes.
I've stuck it in the extended bit so you can read by clicking the link. If you don't want to read it, you don't have to click...
Talking
Jules is talking in single words, and needs real pushing to get more than "Yes" and "No" out of her. This is a combination of tiredness and the tumour messing with her communication side of the brain, something that's been going on ever since the last operation. Some of it is also down to the damage caused by the stroke. She still has her moments, with statements like "Deaf shit", "Stop tickling me", so she is still able to string a sentence along when forced. And I think that's the key now, she HAS to be forced into it, as her frame of mind and energy means she's reluctant to do it herself.
Listening
Jules has bad hearing in her right ear, again because of where the tumour is growing. She has clear and complete hearing in her left side, and can hear the ripping of a Mars wrapper at 100 paces 
Seeing
Jules is now completely blind 
Nothing more to say on that
Moving
Jules is completely bed-bound now, with movement in her right side, and little or nothing down the left. She still has feeling in her left leg, but it's not that much. Again, this is the tumour slowly pushing it's way into that area of the brain which controls the feeling and movement.
Pills & Potions
Keep looking at So What's This Treatment All About? for updates as and when I find more info on the stuff Jules is taking. And What Are You On? for the other medicines, drugs, tablets...
Overall
Jules is going downhill, there's no way of getting away from it. The nursing staff have said as much, but as always, no-one can say for certain how long, and when. If anything can be said, it's going to be weeks and months, not months and months
Posted by alan at April 22, 2004 1:11 PM
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Comments
Alan - I have been reading your Blog for a few months now on and off, and I have to say that I admire you a hell of a lot. Jules is very lucky to have someone like you and your honesty and frankness are an inspiration to us all. My wife was diagnosed with an Oligodendraglioma in Dec2000 and has been receiving treatment since. I know some of your worries and concerns and I find it hard to talk about them sometimes. This condition has ultimately led to the breakdown of my marriage so I too have been a victim.
All I can say is keep going through the coming months and enjoy what time you have left. take credit that there are other anonymous people who have read your weblog and have been touched by your posts. Keep the chin up as much as you can and all the best.
Lee
Posted by: Lee at April 28, 2004 4:33 PM
Hi Alan
I know that things are very difficult for you at the moment and i know what you say about talking things through helps. It does. It cant solve things but it helps to say how you feel. I wish i could see julie as i feel for her so much. I know what steroids can do because i have the same problem and she looks so unwell in some of you pics. please tell her i am thinking of her and i still care. I know things are difficult between bryan and janet but i myself still feel for what you are all going through my thoughts are with you all
Love Angie
Posted by: Angie at April 29, 2004 11:25 PM
Hi Alan
I having been reading this log probably since you started it, keeping up to date with the progress, I guess like all of you, I am always hoping for a miracle happy ending. You are coping so well, most of us couldn't even begin to imagine what you must be going through. I want you to know that even though I've lost contact with you and the family, my thoughts and best wishes are still with Julie, you and everyone affected.
Love Emily
Posted by: Emily at May 1, 2004 11:46 AM