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Old 09-27-2008, 09:38 AM   #1
Sandy in Silicon Valley
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Join Date: Aug 2007
Location: Silicon Valley, CA
Posts: 76
CURE article: When Patients Don't Want to Know

Hi,

I think that this article has some excellent points about the difficulties for caregivers, when patients can't talk about their own (sometimes dire) prognosis:

http://www.curetoday.com/currentissu...ers/index.html

or tinyurl format:
http://tinyurl.com/34pmlj

"For caregivers of cancer patients, life is a demanding balance of preparing for the worst, while hoping for the best. It can be even harder when the caregiver knows the story won't end happily ever after, but the patient is adamant about not wanting to know his or her prognosis."

My problem, as a Stage IV bc patient, was initially the opposite - my husband wouldn't talk about, or even consider, my wish to make death arrangements in advance. His responses were a deal- breaker: "Oh, I won't let you die!" "You're not dying anytime soon" (he happened to be correct, but neither of us knew that at the time...) Then, I nagged at him until he read Final Gifts, took the IDEA of my death seriously, and turned into a protective mother hen, which I didn't like either. We've since established a nice middle ground, where we can talk/ cry/ joke/ wonder about my death - or even his! (he's overweight, but otherwise healthy, so if he predeceased me it'd be a huge shock, but still not past imagining!)

I've prepaid my funeral and cemetery plot expenses, had my gravestone engraved (but for the DOD...), and otherwise took control, so, when the time comes, he'll be left with little to do but grieve - which suits me fine!

(((hugs)))
Sandy in Silicon Valley
__________________
1992 - age 44/ ER-/PR+ Stage II dx - mastectomy, CAF x 6 cycles; Tamoxifen
1997 - BRCA1 mutation dx'd
1998 - ovaries removed
1999 - off Tamoxifen, on Arimidex
2003 - dx'd Stage IV - lymph nodes & lungs. ER-/PR-/HER2neu+++.
Tx: Herceptin & Taxotere (6 cycles).
2005 - 2.9cm x 3.6cm brain tumor. Craniotomy, CyberKnife. 9 mo. staph aureus infection at incision site - 2nd craniotomy. Two small brain mets CyberKnife'd.
2006 - revisit Xeloda - dosage lowered to 2500mg/day, 5 cycles.
2007 - "spot" dx'd on qtrly brain MRI - same location as CyberKnife 7/05. > by 2-4mm per quarter - - radiation injury or re-growing cancer? Tykerb added to Herceptin - July, still "watching & waiting". Otherwise, fully functional...


"The majority of people are not only afraid of holding a wrong opinion, they are afraid of holding an opinion alone." Kierkegaard
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