CSN Login
Members Online: 4

You are here

Done with treatment - NED - but emotionally in knots

Mary27609's picture
Mary27609
Posts: 22
Joined: Jun 2014

I feel so stupid. I was driven and positive all during treatment, but now that I've had a clean MRI and my hair is coming back in and the feeling is coming back in my hands and feet I feel depression coming on. I mean-- I've never been diagnosed with clinical depression, but I imagine this is what it feels like. I have so so much to be thankful for but fear for the future consumes me. I really got the results I wanted-- everything I prayed for-- but now I feel lost-- cut off from all that "protected" me during treatment. And I know that's just stupid- I get rechecked next month and could call in an instant if I had any real symptoms to scare me. I just wish I felt happier.

ConnieSW
Posts: 1570
Joined: Jun 2012

This happened to me  and many others on this site.  I think it's the letdown from going from fighting mode to learning to live your life in the new normal.  I cope as best I can but probably would be doing better if I'd had counseling.  Others have used meds but I'm adverse to taking things if I don't have to.  That's just stubborn me.  It certainly doesn't make a huge amount of sense considering the chemo I had poured into my body.  Hopefully some others will have good advice to offer you but i want to reassure you that your feelings are normal and common.

Mary27609's picture
Mary27609
Posts: 22
Joined: Jun 2014

Thanks so much for responding. It makes me feel better to know others have felt this way. I'm thinking I'll look for a local support group. I never did while in treatment... it just seemed like so much to do... but now I wish I had. I'm wondering too what my hormones are up to and what that does to my mind. I was so determined to be the best little cancer patient ever... I never asked about that.

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2901
Joined: Mar 2013

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.

Mary27609's picture
Mary27609
Posts: 22
Joined: Jun 2014

It makes me sort of sad to admit it, but you're right. I could never explain it to my family... that I sort of miss treatment. I do work and worked through all of this... I never thought of using that... I think my company calls it REAP. Thanks for that idea. I really passed up some resources trying to be tough and now I'm feeling sort of nuts. 

ConnieSW
Posts: 1570
Joined: Jun 2012

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

It happened to Me's picture
It happened to Me
Posts: 206
Joined: Apr 2014

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

Mary27609's picture
Mary27609
Posts: 22
Joined: Jun 2014

When will our stamina come back!? My last chemo was in February and I thought for sure I'd be moving better by now. I'm moving a little better because now only my toes are numb rather than almost falling over ever time I stand up, but I still spend way too much of the weekend sleeping and could use a nap every day. My family and co-workers keep saying rest, rest, rest-- it's BORING and depressing and there are things I want to do. I did a regular pre-illness grocery shopping Tuesday night-- I went by myself and went down every aisle. While sick I've been taking my daughter to help-- or sending her in alone-- and only doing essentials. Tuesday I had all these plans to cook when I got home-- I barely got the groceries put away and had to lie down and was out for the night. I say I miss treatment but it may just be this limbo that's getting to me. AND feeling like I'll always be here-- not sick but not well. Thanks for letting me fuss!!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2901
Joined: Mar 2013

Mary, don't be too hard on yourself.  You just beat the heck out of your body with surgery and some crazy chemicals and recovery from this take times.  I am two years out and I think there are days that I still feel the aches/pains and fatique of treatment. 

You got your groceries and they are there when you are ready.

Another woman in my department finishing up her radiation next week stopped by my office today and we had this same conversation and she has the same fears.  We have a new normal and your thoughts are normal too. 

pinky104
Posts: 574
Joined: Feb 2013

When I found out I had cancer, I suddenly had to consider that I might die a lot sooner than I'd thought I would.  My mother lived to 90, my father to 84, and my paternal grandmother made it to 95.  I thought I had it in my genes to live just as long.  I suddenly had to adjust, especially since I had the worst stage of cancer I could have, IVb.  I began to wrap my mind around the possibility of dying, and I resigned myself to it.  I was married for 10 years, divorced for 8 years, and then remarried.  The 8 years of being divorced were some of the worst years of my life.  I wasn't good at doing the things that men (and some women) do--mowing the lawn, maintaining the lawnmower, fixing a leaky roof, etc.  I realized that if I died before my husband did, I might not be put into that situation again.  It seemed like a positive thing to me to die earlier than he did. As odd as it seems, it actually felt like a letdown to still be alive and kicking after surgery and chemo.  My coworkers were all saying I was wrong to expect the worst, that I should think positively.  However, if I expected the worst thing that could happen would happen to me (dying), things could either turn out the way I expected or be better than I expected.  I came out of my surgery and had NED for about 4 years.  Now, it may be back or it may not be.  I have to wait until September and see.  And yes, I still worry about the upkeep of my lawn and house, but I'm better off financially than I was when I was divorced, so I may be able to hire someone to do the work if I can't do it myself.  Although the way the inflation is in my state, I may not be able to afford it for very long. I'm 65 years old, so who knows how long I'll live....

I think most of us will be worried about the return of our cancer for the rest of our lives, and we just have to deal with that.  We do have the advantage over the ones who've never had it in that we know what to expect to happen the second time around. Chemo wasn't nearly as scary as I'd thought it would be, and I was given meds so I wouldn't be vomiting.  I can do without having surgery again, though.  I was pretty miserable after that.  I can also live without the shortness of breath from chemo-induced anemia and the loss of my hair, too.  But overall, if I do have it again, I don't think it'll be nearly as bad as before.  Knock on wood! 

I wish you luck in your adjustment period.  It'll take some time to get comfortable in your own skin again. Just be sure to go for all your check-ups and question anything you don't feel is normal.  If you don't get the answer you want from one doctor, don't hesitate to try another.  One doctor just told me I was having pain from my adhesions from surgery, four years later.  I'd only had the pain a couple of months.  I went to my family doctor, who ordered a CT scan and found a small mass on the other side of my abdomen.  If I hadn't complained a second time, this wouldn't have been found.  

There are many good people on this site, so come back and ask for help whenever you need it.  You'll get plenty of support here. 

Mary27609's picture
Mary27609
Posts: 22
Joined: Jun 2014

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! 

Judemo
Posts: 120
Joined: Jun 2014

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's picture
NoTimeForCancer
Posts: 2901
Joined: Mar 2013

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. 

Judemo
Posts: 120
Joined: Jun 2014

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!

survivingsu's picture
survivingsu
Posts: 134
Joined: Apr 2013

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

 

Double Whammy's picture
Double Whammy
Posts: 2835
Joined: Jun 2010

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's picture
Mary27609
Posts: 22
Joined: Jun 2014

Ohh yes-- you hit that one on the head-- family and friends no longer what to hear. They consider it over-- they consider me "well" and they say (my daughter) that I'm jinxing my good results if I keep talking about it maybe coming back. Thank goodness I can come here and "talk" all I want :) Thanks!

Mary27609's picture
Mary27609
Posts: 22
Joined: Jun 2014

Susan-- Thank you!! I do think that part of this all is that I don't think I deserved to survive and so I'll surely get sick again. And particularly on days when I'm missing the treatment, my mind spins around and I think "you deserve to get sick again because you're clearly not thankful!" But I think getting all my demons :) out here is really helping. I didn't fall into my usual deep funk last night-- I stayed busy and got a good night's sleep. Yeah. Thanks again.

 

My best friend from college is named Susan, but early on, when we were young, I started calling her Susna. She was so amazing when I was at my sickest-- would send me silly things and prayer cards to cheer me up and keep me going. I so love her. I had to re-type your name because it came out Susna :)

ConnieSW
Posts: 1570
Joined: Jun 2012

"You deserve to get sick again because you are clearly not thankful."  I've felt just that way and wondered how I could be so perverted.

SettledSue's picture
SettledSue
Posts: 55
Joined: May 2012

When I was first diagnosed and through most of my treatment I was heavily into denial. Once treatment was over the protective denial has started slipping away. I have had one recurrence but have been NED almost a year now. I am daring to be more hopeful now but still realize another recurrence could pop up any time.

 

Sue

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

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

 

ConnieSW
Posts: 1570
Joined: Jun 2012

You expressed that well.

It happened to Me's picture
It happened to Me
Posts: 206
Joined: Apr 2014

Kathy, that was incredibly well said.  Thank you for putting into words exactly what I and probably all of us feel and couldn't express it like that.

Well done. 

Jeanette

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Thanks Connie and Jeannette:

Every once in awhile I can articulate how I feel.  lol

My best to everyone.  ((Hugs))   

Kathy

Subscribe to Comments for "Done with treatment - NED - but emotionally in knots"