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chicoturner's picture
chicoturner
Posts: 285
Joined: Apr 2009

Hi, you are the ones I turn to when the disappointment hits. Got my scan results today. They aren't bad, the spots I had have grown some and there were some new ones (on my lungs) but no other spots anywhere else. I have been 12 weeks with no treatment, so now we know what happens! I have to wait for the onc at UCSF to review and advise. My guess is they will do nothing for a while longer. This is pretty much what I expected, but never the less feel disappointed that this was the report. Somehow we hope against hope that it will be different. I am trying to see the positive in it, but maybe just for tonite I will cry. It seems everyone wants to see the positive and encourage me, so I let them. And tomorrow I will too, but tonite I just need someone to say it is ok to be disappointed. Thanks for letting me share with you, I am feeling better already! Jean

thready's picture
thready
Posts: 475
Joined: Sep 2009

When those hard times hit it is so good to come here. O.K. to have those down times and to cry. Hope the onc gets things looked at and then you can move forward. Will keep you in my thoughts.
Jan

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

I understand. Stay positive and agressive!! Hugs!

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greybeard64's picture
greybeard64
Posts: 254
Joined: Mar 2010

Oh jean, I understand completely. Go ahead and cry you some tears "big as biscuits". Even before my dx I had heard about the "power of staying positive" and how the mind was such a strong weapon in this fight. Well I have learned, and I bet you have too, that you just cant be 100% positive all the time unless you are not really grasping the situation at hand. So you have your negative time, and you cry those tears, I feel it is a positive to let those emotions have their moment too. You will come back around and when you do you'll be stronger again because of the release.
If I could get you a box of tissues I would.
So Im sending a hug full of warmth and love your way while you have your cry.
greybeard

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

It's always hard, and I always have to get in a big cry to work through it. I have the moments of why can't I have the NED discussion? Why can't MY activity decrease? It just sucks, especially when you go into the appointment expecting some good news; after all, it's your time for good news this time! You've been doing everything right, and the beast is just proving to be a tough competitor. Then, after the crying is over, I pick myself back up and determine to show the beast I am tougher. God made me a strong son of a biatch for a reason, so I expect I'll continue making use of those talents as long as I can! It just SUCKS! It would be nice if we could just stick our heads out our front doors and let out a scream; it would make us feel better, although the neighbors would be much more nervous than they already are! Back in my early 20s I had a friend that used to do just that at random moments! We'd be partying in her kitchen and she'd sling the door open, yell, and shut it back! I wouldn't have wanted to be one of her neighbors, but it sure was a great stress reliever! Vent and vent and then vent some more! There will be brighter days ahead!
mary

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Well, that sums up it up better than I could, Jean:)

I want to respond to 3 of your quotes:

"Somehow we hope against hope that it will be different."

Yes we do - but it's that feeling which propels us to keep going, even when we know it's not all that we want or deserve. It's always the hope that gets one out of bed every morning, with nothing but HOPE for something that day.

"It seems everyone wants to see the positive and encourage me, so I let them. "

For those folks in the dark, they know of nothing else to do. We can't fault them, because they just don't have the experience that we've acquired. I've found that having someone support you in any way is better than being ignored - and believe me, I've had it both ways. But I absolutely know what you are getting at here...it's hard to always be upbeat, when sometimes you just want to say, "I'm hurt", "I'm tired", or "I'm scared."

I've also stood there when someone is giving me the "perfunctory" you'll be ok, hang in there stuff - and I look at them, smiling of course, and think, "but what do you really know about it?" I'm the one that just came back from the doctor and got the bad news and you're telling me all is ok. But again, they are not privvy to my entire situation, and trying to help, so I just graciously thank them and get back to it. I try and keep upbeat, because as you say, everyone expects it. But, as Chris (greybeard) said, if you're up all the time, you're not completely dialed into the reality of all of this.

"I just need someone to say it is ok to be disappointed."

Jean, you came to the right place - it's more than ok to say so here. Your family can only be of so much comfort to you in a different way than here. How can one really know, unless they have experienced? That's what separates your family from everyone here. Here, you know that all of us understand the most intimate of details. Your family on the outside just cannot provide you with "that type of comfort" that you so desperately need, right at that moment, when you post.

Your feelings further validate alot of things I've thought about during my journey and watching others as well. There is a great deal of comfort in that, for the simple fact, that we all know we are not alone or unique to these type of feelings. And there is a certain warmth to that. Alone is such a hard way to go - and I know this road all to well.

I'm so glad that you can come here and be honest about what you're feeling. How are we ever going to learn anything if we don't tell each other the TRUTH?

You know, I feel a little better. I've had alot of pent up feelings too, and I write posts in my head on the way in to work, but they never make it to the board. I agree with Marie, that it does help to post or respond to posts - it's very cleansing.

Have a great day, Jean - it's been great talking with you this morning:)

-Craig

Annabelle41415's picture
Annabelle41415
Posts: 6222
Joined: Feb 2009

So sorry that you have this disappointment. It's ok to be sad and frustrated. Unless someone has had a cancer diagnosis they truly do not know what it is like. It is so hard to get tests results back especially when they aren't what you were hoping for. Let us know what your oncologist says.

Kim

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Jean,

I certainly understand. Yes, let it all out, then tomorrow it's onward and forward again. I just got my scan report back today & it's "stable". I know that's good, but I was so expecting better news than that & I was a bit bummed last night. But today is a new day and I'm still here... and so are you! And you will continue to be and to fight this!

Hugs to you,
Lisa

chicoturner's picture
chicoturner
Posts: 285
Joined: Apr 2009

It is truly comforting to realize how many of you really do understand our feelings, but how sad we have to have this stuff in common! I am so blessed everyday and I do realize that compared to many, I have it very easy. I see people without cancer who suffer daily and will get little relief. It is what it is and I will not give up the fight! Thank you for reminding me that we have a whole team of people fighting!!! Thanks again! Jean

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Jean,

I think it's definitely okay to give yourself permission to cry for a bit. Then you can pick yourself up and make a plan of action.

*hugs*
Gail

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