prayingforccr wrote:I have been STUNNED at the lack of response Ive received regarding this issue from “experts”.
I have gone to a nurse at my oncologist with tears in my eyes begging for help. Basically l, her response was “not my job”. My oncologist said basically the same thing “ Talk to pain management and a GI”.
Again, I’m down to 150 from 225 in 8 months and no one has said anything/intervened/helped me with this.
prayingforccr wrote:I have been STUNNED at the lack of response Ive received regarding this issue from “experts”.
They don’t seem to care.
I have gone to a nurse at my oncologist with tears in my eyes begging for help. Basically l, her response was “not my job”. My oncologist said basically the same thing “ Talk to pain management and a GI”.
“Take a couple of stool softeners”
Again, I’m down to 150 from 225 in 8 months and no one has said anything/intervened/helped me with this.
Jolene wrote:Oh dear, this sounds terrible.
I am shocked that MSK hasn't stepped up at all given how well known they are for their bowel cancer studies? How about writing something official to their medical board directors direclty and bringing it to their attention if your healthcare team couldn't be bothered ? Could it be an internal management issue ?
I would even consider highlighting the situation to official medical boards if you feel they are being negligent.
MSK's center is often quoted as the gold standard of rectal cancer management from my part of the world. I'm really shocked to hear of such news.
I hope you find some solutions soon.
Lee wrote:
I truly believe there is more to this story than what we are getting. Ever hear that old saying "there are 2 sides to every story"! For someone who wants help, when I asked several specific questions, I got vague repeat answers as a response. You can't really help someone who want to be that way. Their opening thread did a lot of complaining about their current QOL issues, & to some extend, the medical professionals; butt when you try to get to the bottom of what is going on, this person does NOT want to talk about it.
Just my humble opinion,
Lee
P.S. Edited to add, this person has made it clear in other threads s/he would commit suicide vs getting a colostomy bag. When I asked why, what is so bad about a colostomy bag, no response. I thought my QOL issues were bad, thus my bag today. This person has me beat on poorer QOL issues. I don't regret my bag, gave me my life back & I was able to be a normal mom to my 2 kids & I got to see them grow up. Best decision I ever made. I am very open about my bag & most friends/people tell me if I had not told them, they never would have know I have a colostomy bag.
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