Done with treatment - NED - but emotionally in knots

Not stupid at all!!! 

I remember thinking, my "friend" cancer is gone.  It dictated my life for so long.  Dr appointments.  Chemo. Blood draws.  Radiation.  Lymphedemia.  Physical Therapy.  And then?  It is gone.  It was a routine and I got used to it month after month, and then I am left standing there asking "now what?" 

If you work, or still have access to that healthcare network, is there an EAP number you can call?  I am a HUGE advocate of this, and if that isn't available there should be local resources available. 

Isn't it nice to have a place like this to come and "talk"? The women here are amazing and you are never alone.

ConnieSW said:

EAP

I'm retired now but my employer offered that.  It's a good idea.

Mary,

I could of written your posts.  All of them in fact.    I thought I was the only one who felt that way.  It's like nobody understands what is going on in my head and thought maybe I was crazy.  The letdown I guess and the endurance and stamina not coming back as soon as I was hoping.  Thank you for sharing.  Glad to know I am not alone in my thoughts.  Get some help.

Jeanette

Hi Mary27609,

I survived a rare form of small cell undifferentail carcinoma of the uterus.  I was diagnosed in July 5 years ago.  What a good question you ask!  I certainly understand the emotional rollercoaster of cancer and cancer treatment, and all the aftereffects, including emotions. I went through the following, and wanted to share to let you know it gets better:

All of a sudden one is faced with mortality - I lost my usual confidence after having cancer.  I felt my body let me down.  I fear every future exam.  In time I realized that I could also look at it as, gee, how lucky I am that my body responded to the treatments, rather than be let down that I got the cancer in the first place.  Facing the unknown also helps one's perspective on life in general, I know this sounds cliche, but I really notice and appreciate more of the little things in life.  But while the fear that something will come out of the blue in the future remains, the memory of those that helped you through the tough times also remains strong.

Be extra good and forgiving to yourself.  This is also a challenging time.  I found that while I progressively felt better after treatment, I faced another hurdle I did not anticipate:  guilt.  I still deal with that.  Guilt that I survived while a lot of good people did not.  I still do not understand why some things work and some things do not for others.  I still feel guilty that I had excellent care, doctors, staff, technology, and access to this all, while others do not.  I did not lose my job, and was able to get back to it, and I know for others this is not the case.  So far the thing that helps me compensate for this guilt is sharing what I have learned and being there for others.

I send you my very best wishes and kind thoughts,

Susan

survivingsu said:

I think it gets better in time.

Hi Mary27609,

I survived a rare form of small cell undifferentail carcinoma of the uterus.  I was diagnosed in July 5 years ago.  What a good question you ask!  I certainly understand the emotional rollercoaster of cancer and cancer treatment, and all the aftereffects, including emotions. I went through the following, and wanted to share to let you know it gets better:

All of a sudden one is faced with mortality - I lost my usual confidence after having cancer.  I felt my body let me down.  I fear every future exam.  In time I realized that I could also look at it as, gee, how lucky I am that my body responded to the treatments, rather than be let down that I got the cancer in the first place.  Facing the unknown also helps one's perspective on life in general, I know this sounds cliche, but I really notice and appreciate more of the little things in life.  But while the fear that something will come out of the blue in the future remains, the memory of those that helped you through the tough times also remains strong.

Be extra good and forgiving to yourself.  This is also a challenging time.  I found that while I progressively felt better after treatment, I faced another hurdle I did not anticipate:  guilt.  I still deal with that.  Guilt that I survived while a lot of good people did not.  I still do not understand why some things work and some things do not for others.  I still feel guilty that I had excellent care, doctors, staff, technology, and access to this all, while others do not.  I did not lose my job, and was able to get back to it, and I know for others this is not the case.  So far the thing that helps me compensate for this guilt is sharing what I have learned and being there for others.

I send you my very best wishes and kind thoughts,

Susan

 

You've been to hell and back with treatments and it will take time to recover - and you have every reason to worry.  There are simply no guarantees.  It does get better as time goes on, as others have said.  Remember that we all understand because we have all been there.  Don't beat yourself up over how you think you should feel or how someone else defines that for you. 

My endo cancer was the common type and was early stage, low grade and did not require any adjuvunct therapy.  I still worried.  I also had breast cancer with chemo and radiation and was so surprised at how awful I felt after treatments ended.  It was "over", wasn't I supposed to be happy?   And that emotion Susan points out - guilt - that surprised me, too.

We're all here whenever you feel the need to express these feelings.  Sometimes our friends and family no longer want to hear about them, so we tend to feel we shouldn't feel the way we do.  For whatever it's worth, I think your feelings are perfetly normal.

Suzanne

Mary27609 said:

I hope you get good news!

I hope you get good news!

You make a lot of good points! I found myself thinking very differently about death. I think now I only fear it for those I'll leave behind. If I can give my daughter a couple more years, I think she'll be okay on her own (she's 22... a very YOUNG 22... still at home and not driving... we're working on that). My brother died from a heart attack at 31-- I don't know if my parents could stand to lose another child. So I'd like to be around a little longer for them. My husband and I live apart since I got sick and get along very well living apart. We're not talking divorce but I'm also no longer a part of his daily life-- he would be fine.

I fear surgery more than death-- that's CRAZY I know, but my chemo doctor told me my type of cancer most often metastasizes in the lungs. We watched my grandmother die from emphysema-- not being able to breath is one of my worst fears. I know many many people lose parts of their lungs and do great-- it's just such a fear of mine.

And you're also right about chemo-- I was so scared of it, but in the end I didn't mind it at all. They gave me anti-nausea medicine that made me so sleepy. Chemo was sleeping in a big chair for a day every three weeks. And they gave me steriods that made me feel great-- gave me an appetite and energy-- for a few days. And my sister would bring me lunch at chemo-- my appetite would kick in that soon-- and it was so nice to sit and talk and be feeling momentarily better. When the steriods wore off I had a couple of achy bad days, but it was still not nearly as bad as I feared. And I felt good about chemo because it treats your whole body-- radiation was a lot faster, but only treated the disease site. And the last few weeks were gastrointestinal hell  

My sister actually had a long talk with my doctor about preventative treatment-- like a continuing low dose of chemo or something. I think she's the only one who knew or understood that I was going to freak out when treatment was over. He said they've tried it and it doesn't improve long-term outcomes and does have side-effects-- so no, there's nothing like that. I would do it if there were.

Thanks for letting me vent! My father says I'm a worrywart... imagine that! 

I'm left with so many questions while I wait to meet with oncologist next week, so reading everyone's messages sure does help! Everything is new to me.  My heart goes out to all of you who are suffering.  The only suffering I'm going through right now is post biopsy cramping and driving myself nuts wondering what my fate will be!  I'm scared to say this, but there is a part of me that wants to get the worst possible news so I can just leave this earth.  I'm sure that sounds selfish and insulting to those who are fighting so hard to survive! But, I hope it's safe for me to say something like that here. not sure if anyone else has ever had thoughts like that? I think it's due to life issues, not having children and having had tough times in relationships lately.  I'm usually very positive. I believe that this is all part of life and what a wonderful support this website is.

NoTimeForCancer said:

Judemo, the women here are

Judemo, the women here are wonderful.  They welcome everyone and will always try to help.  This site is also a place you can ask the questions of those who have had similar situations and can give suggestions. 

No time for ca (NTFC) I appreciate your response. now I don't feel so bad for saying what I did.  I think I was just having a weird day. Thanks again. I also have been watching those Utube videos on uterine ca....they are so helpful and informative!

Dear Mary:

Like everyone has said, at one time or another, we have all felt this way.  Then I came to realize exactly what it was.  Where do we fit in?    We are survivors.  After surviving, you get the feeling that the medical community only cares when you are treating or exhibiting symptoms.   Once you have been cleared, you are pushed to the back.   (Not in reality, but thats how it feels).   Also, you can't function like you never had cancer because you did so your social activities with prior friends, family, etc. all have changed.  You look at life differently.   Then there is the other side where you know of people still under treatment and now that you are beyond that, you feel you don't fit there anymore either.   It is all normal and it too will pass.    It can rear up when you have follow up appointments or tests.   Heck, I even got down because they were always doing stuff for other types of cancers and not the kind I had (silly for me to be that way).  Sometimes you just have to laugh at yourself and move on.

So lets look forward and rejoyce in the fact that you are NED!   That is terrific!    Take one step at a time and get used to the new NED you!

My best to you,

Kathy