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I am the third person in my family (Grandmother, Father and I to have P/C. I have been involved with P/C since 1979 and passed the panic stage 20 years ago. Sadly, there have been very little changes to offer P/C patients and when I come to this board and see the desperation in the posts, I try to offer something positive but honest and upfront with them about the effects of P/C.
I am very fortunate to have a loving, caring, and supportive family. The posters need to know their efforts are appreciated BUT, when your in panic mode all the time many things happen 1. You waste valuable time running around, time you can be spending on Research, treatment options, AND enjoying our final years, months or days we ahve left in us. Talk with us, Good and Bad, go through old pictures with us, find out who that funny looking guy is? Pain management is most important to the patients well being and participation in their care. Finally, You scare the hell out of us and we may give up way too early!
Panicked newcomers always ask the same thing how much time left, what's
next, and I hear the side effects don't outweigh the benefits of treatment?
It's like they are making the life extending decisions not the patient? Keep
the patient comfortable, accept the inevitable and enjoy us for as long as we
are here. I know when I leave this earth my family will miss me but they will
have no regrets. Because we spent our time wisely! Thanks again Allyson
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