WTF - Ask the right question !

• By sojourner
• Posted November 1, 2009 at 1:21 pm
• Report post

Curmudgeon,

I remember well the day it dawned on me that my treatment was palliative. Even though the doctor had said from the beginning "no cure", I hadn't thought about it much. I actually found it a little freeing to realize that I didn't have to be tied to a schedule of treatments because it would hurt my chances of recovery if I didn't get a particular treatment at just the right time. So I allowed myself to adjust the schedule of treatment if I wanted to travel or do some other thing.

It is hard to be upbeat but I try to remind myself that none of us knows what tomorrow might bring. I've just warned everyone that if I get hit my a bus after all this, I will be one very angry lady.

Keep on keepin on.

Blessings, Donna

• Reply

• By -T-
• Posted November 1, 2009 at 1:24 pm
• Report post

go ahead and vent, lol. this is a good place for it. to be cured of cancer...? miracles happen everyday. even those who are stage 4 and are NED (no evidence of disease) are usually not considered cured by medical professionals. some people never become NED but they LIVE with cancer, and do it well. don't let anyone step on your cupcakes, pallative care has been known to produce NED.
stay blessed, t

• Reply

• By cards7up
• Posted November 1, 2009 at 2:27 pm
• Report post

I think I'd prefer the term "chronic disease or illness." Palliative sounds so final and as many point out here, they live many years under "palliative care." Call it what you want and live your life to the fullest. Take care, JC

• Reply

• By emilyjane
• Posted November 1, 2009 at 2:31 pm
• Report post

I was told from initial diagnosis that I was incurable and any treatment was for palliation. Well, not cheerful to hear. That was almost 2 yrs ago and I am feeling great, much better than before diagnosis, when I kept going to docs with complaints. I am living a great life, fully active and still on chemo. The chemo is easy, I feel fine. The cancer has never disappeared but it has shrunk, some spots have disappeared and others have sprung up from nowhere, biggest tumor has shrunk, onward we go. It is a roller coaster ride, just try different chemos and change when it stops working. They are all very surprised that I am still here and doing so well. I enjoy everyday and plan to be around for a long time.
EJ

• Reply

• By Musicmissmaggie
• Posted November 1, 2009 at 3:57 pm
• Report post

I presume it was Dr Foot-in-Mouth you saw!!! Where do they do their training - I have said many times that if my onc should start talking about prognosis I would the first to shut her up mighty quickly.
I am stage 4 NSSC and am now on Alimta after mets were discovered in May - but I am alive and feeling great - and I mean great - for 2 weeks out of 3 and lead a normal life (whatever normal is!!) - I teach music to a few, play and sing at church, even had a game of golf a couple of weeks ago.
Don't let anyone tell you how you are feeling - they are your feelings, not anyone elses!!!!!
With prayers,
Margaret

• Reply

• By AliceL
• Posted November 1, 2009 at 4:15 pm
• Report post

My doc likes the term "palliative care" also -- but I'm with JC and I think there are better choices. Remember - it is just a word and really doesn't mean much at that.

• Reply

• By cuddles53
• Posted November 1, 2009 at 5:29 pm
• Report post

Stay positive as much as YOU can. As some have said it is only a word, their word, your word may be cure. If it helps you feel better to think cure, than think it, because they could tell you that you were cured, they did my husband, and he died of a bleed in the brain, he was cured of an incurable ext, stage small cell lung cancer, yet he died of a bleed in his brain 6 years after diagnosis. so say and think what you feel. if you feel real good, you aren't dying! God bless Sandy

• Reply

• By kjseal
• Posted November 1, 2009 at 6:25 pm
• Report post

I was told point blank that it was not curable but treatable. Of course by the time I heard those words I had begun to "zone out" only hearing them from far away. That was a few weeks ago. I've just completed two weeks of treatment (brain/lung radiation and two rounds of chemo).

I understand that this is the place where we can do just what you're doing. Hope it makes you feel better.

FLORIDA - Jo

• Reply

• By pattyp1
• Posted November 1, 2009 at 6:29 pm
• Report post

hey, you sweet thing, you,
let's turn this bad boy around and look at it a slightly different way - for a doctor to admit he could cure something, he'd have to know what caused it, the reason the treatment works, and if the treatment will work on you. the best he can give you now is that the treatment reduces or eliminates either the symptoms or the disease in some people. my daddy's onc was real straight with him - once you have lc, you have lc and you live with lc - and if the Big Guy upstairs is willing, you will live with it for a long time - what the treatments can give you is a lessening of your symptoms (the best definition of palliative), stabilization of the disease, or remission. any one of these is a blessing. I'd call any of these options pretty darned positive.

time for a sister-brother talk here - yeah, it would have been nice if you'd have caught something curable, like an ingrown toenail - but you didn't catch that this time. remember that the best way to fight the beast is with love and laughter, not statistics or prognoses. and I'm sending curative love and hugs your way - next time, I'll tell a few silly jokes to make you laugh also. in the mean time, ponder the gorgeous hairdo in my picture....

hugs, buddy
Pat

• Reply

• By Curmudgeon
• Posted November 1, 2009 at 9:04 pm
• Report post

Thanks Guys and Gals ....

• Reply

• By HollyJo
• Posted November 1, 2009 at 9:26 pm
• Report post

COPD is Not curable, Type One Diabetes is Not curable, Heart Disease is Not Curable, but they dont use the term Palliative.
They tell you it is a chronic disease which is "Treatable". Hmmmmm.......
I'm with JC, "It's a chronic Disease that Is Treatable".
Do they need to inform us of the seriousness of LC, yes, but they need to pretend they are on the recieving end.....
And it is Treatable!
Holly

• Reply

• By radar212
• Posted November 2, 2009 at 8:30 am
• Report post

I like to think of it this way-- We all have the rest of our lives just like non cancer patients. We have whatever God has planned for us and no one - not even an onc has the powers to say what our longevity is.

• Reply

• By slm-dem
• Posted November 2, 2009 at 9:32 am
• Report post

Bravo to all the responses!!! I whole heartedly agree!!

• Reply

• By debra1
• Posted November 2, 2009 at 1:08 pm
• Report post

I know this disease is a bunch of ****. I have ext. SCLC and was dxd 3 years ago. The truth was very hard to put my head around but 3 years is good and much better than I thought at the time. Be positive as much as you can and do not ask those questions that you might not want answered. I asked time I had on my first vist to my Oncologist and he would not answer-said it depended. SHort term good, long term did not know... He did give me time frame on NED and I have broke that record by a year..........so just remember the statistics do not matter, it all depends on you!

• Reply

Add to the discussion