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Old Sun Feb 14, 2010, 07:43 PM
Chirley Chirley is offline
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Join Date: Oct 2007
Location: Logan City Australia
Posts: 1,100
Hi Julie,

Your family might not physically be able to help but I bet it's good knowing they are there for you. Maybe if you tell the ? hospital ? clinic that you have transport problems they might me able to offer some suggestions. e.g. I know the Mater Private has a bus service that picks up and delivers some patients and my local public hospital has a service called LANDS (local area network driver service) where volunteers pick up and deliver patients for their appointments.

Unfortunately, I'm in your situation. I live at Loganholme and have to go to Chermside for my day care appointments. That is one heck of a drive in peak hour traffic there and back. My friends all work full time and my only family are elderly parents who can't drive and my brother who lives in the country. I have had times when I've gone to day care and the doctor has decided I have had to be admitted to hospital. It's very hard.....no one able to bring me nightwear, or toothbrush etc. My car is left in the car park for days and when I used to be able to go to the Mater Private it cost a fortune to have the car there for days at a time. Where I go now is only a day care and fortunately I haven't had to be admitted from this one because it would have to be an ambulance trip to the hospital.

I don't know what you should do about the trial and your treatment. All you can do is listen to your doctor, do as much research as you can and ask lots of questions. I'm sure you'll feel better after you've made your decision. Sometimes making the decision is the hard bit. I'm a bit of a procastinator and I've always liked to think that if I don't do anything the problems will go away but with your health that isn't an option.

Good luck with everything.

Chirley

ps if you do decide to come back to QLD you know the winters are good.
__________________
Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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