Quote:
Originally Posted by fiercegrrl
so, in the last week i've had some scary days. i almost went to the hospital one night because it hurt so bad to take a deep breath. and then i had a three day stretch where i could not hold down food, water, or meds. so i almost went to the hospital again. it's still not ruled out all the way as i'm experiencing a lot of nausea.
but i met with my palliative care doctor on monday and he suggested that hospice care might be appropriate for me. and i can still be enrolled in it as i go through clinical trials.
i agreed. and i'm still having panic attacks about it.
i don't know how to tell my family or friends. i'm afraid they will think that it means i am giving up. which is not the case at all. but i'm very realistic and don't sugar coat my life and i know that there will be no miracle cures for me. the clinical trials that i'm hopefully going to be starting soon will hopefully add some more time for me. and i want to do everything i can to enjoy everything i can. i want to stop gritting my teeth because i'm stubborn and don't want to take pain meds. i don't want to feel nauseous- i love food! i want to enjoy food!
most people i know want me to live in a fantasty land that i won't die. i don't want to live in a fantasy land of denial.
oy i'm rambling...
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i understand what you mean about hospice care and your family feeling you're giving up. you do what is best for you, and it sounds like hospice isn't a bad idea.
want to know something fabulous? if you DO get hospice care it doesn't mean you HAVE to die within a certain time frame.
get your doc to write you a scrip for zofran injections...it's the only thing that really works on the nausea. take your pain meds. start hospice...goddess knows we are all pulling for you and worried about the fact that your mom likes to steal your medicines. you need support and a team. hospice can give you that. ((((hugs))))