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Lost, but I'm trying

forme's picture
Posts: 1162
Joined: Aug 2010

Hi All,
Thanks for asking about me. I have been feeling 'lost' lately. I'm trying to stay focused on daily living. But not doing such a good job right now. I think my increased pain and all the waiting is getting to me. I did read a post the other day from someone, don't remember who, that said they did the watch and wait for 9 years, I think. I could not do that. I know that time really does move fast, but it feels like forever till the next step in my game plan. And even that is still not very comforting. Anyway, I am here, just a bit lost right now. I think of you all, daily.
Stay well and warm...

vinny59's picture
Posts: 1032
Joined: Nov 2006

It's totally understandable to feel lost, hell I'm in remission for three month's and I still feel that way more times then not. Try to look at the glass half full...... wish you well Vinny

COBRA666's picture
Posts: 2413
Joined: May 2010

How have things been going for you? I know working takes up a lot of time and energy. Are you handling it all OK? John(FNHL-1-4A-5/10)

Posts: 444
Joined: Aug 2010

Well, I feel ya too!

Just done with chemo but never done with fluctuating emotions! I am really struggling with the idea of returning to work by March 31st - I don't feel the confidence anymore - it is really shaken up. How would my body return to normal? Am much weaker, 25 lbs. lighter, etc. Vinny, how do you manage your work with this stuff?

Lisha, I am with you - hugs!

Trying to be positive,

JoanieP's picture
Posts: 573
Joined: Mar 2010

When I was through with chemo in July 2009 I too was very apprehensive about going back to work. Well I did go back to 22 fifth graders and I'm still there. The first day is scary but it gets better. Actually my brain is better at work than anyway. And no I am not smarter than a fifth grader.

KC13167's picture
Posts: 215
Joined: Jun 2010


My last R-CHOP was in October. I have not been able to return to work. Luckily, I have long term disability coverage through my employer. I miss working but am still unable to have a "normal" day -energy wise- since my diagnosis back in 6/10. The whole situation is very frustrating to me : ( Kellie

Posts: 1
Joined: Oct 2010

finished chemo, with good results, will know more after another PET scan.
I have MCL and shortly after I finished chemo, I began the itching again. Is that normal?
Two weeks after my final treatment, I feel pretty yuk......emotional and physical.
Anyone know how long one may be in remission from MCL? thanks and hope all is better for all of us soon.

miss maggie
Posts: 929
Joined: Mar 2010

Hi Lisha,

I really can understand feeling lost with all you've been through. Add increased pain, and waiting, waiting to the mix, how can you not feel lost. I was hoping by now you might have heard something from MD Anderson. Is it possible to give them a call instead of all this waiting?

Thank you for thinking about all of us. I am sure you know by now, our thoughts and prayers are always with you.

Love Maggie

merrywinner's picture
Posts: 627
Joined: Aug 2009

I think I know that lost feeling you feel. I experienced it after finishing treatment that took a year and a half and then the screeching halt. I know our situations are different but like you I spent that time in hyper drive much like your last year has been for you. I was not used to nothing happening and had forgotten how to slow down and manage all of my extra thinking time. I literally had to relearn how to be comfortable with that along with worrying and waiting. The mental part of this stuff is as exhausting as the physical. Here for you. Mary

COBRA666's picture
Posts: 2413
Joined: May 2010

I can imagine how you feel with all you have on you. The waiting game is so terrible. Then when you have pain to go with it makes it 100 times worse. I can just imagine all the thoughts that may go thru your mind. Just keep holding in there and things will get better. You know we think about you every day and only wish the best for you. Even the ones here that are near or in remission have all kinds of thoughts if we get the slightest pain or anything that does not feel right. Like I said I can imagine what you are going thru in your mind. Just hang tight and it will get better. John(FNHL-1-4A-5/10)

allmost60's picture
Posts: 3184
Joined: Jul 2010

Hi Lisha,
Feeling lost is hard enough to deal with when we have a treatment plan, but feeling lost and not having a game plan in place has got to be a feeling of beyond lost! Every so often I fall into a really funky mood and it's really hard to yank myself back to thinking positive. I talked to a friend today who is 3 years out from her chemo from having breast cancer, and she said she still fights that "lost" feeling. I think once you have cancer these kind of emotions are going to pop up for life. The trick for us is to learn how to cope and not let the "lost" feelings take over. Just remember...you don't ever have to deal with your "lost" feelings alone, because we are all here for you 24/7. I hope we will hear soon that MDA will get things rolling for you and stop this "watchful waiting".... that is soooo hard to do! Keep us posted...you are in my daily prayers and positive good thoughts.
Much love to you...Sue (FNHL-2-3A-6/10)

Posts: 444
Joined: Aug 2010

Yes, thanks to all of you for helpful comments! Lisha, again, my thoughts are with you.


hilde451's picture
Posts: 229
Joined: Oct 2009

Hello Lisha:

I can really see where you are coming from. I have been diagnosed in 04 and at that time after the initial shock and after surgery I did not think much about it. But then after the 5 years when it came back worse then ever, stage 4 with bone marrow involvement.
It sure seemed different then it was in 04.
I still have a hard time getting it all out of my mind.
I wish you the best, it would be easy for me to tell you not to worry. But we do. Hope you have a wonderful weekend.

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