So scared now that treatment is over

michelekb
michelekb Member Posts: 28

I finished my radiation a couple of weeks ago and I am an emotional wreck. I am still taking herceptin every three weeks so I am not completely done. I feel emotionally more upset then when I was going through chemo, surgery, and radiation. Of course treatment was hard but, I had no choice but to keep moving forward through treatment. Now that the hard treatments are over, I cry every day. I feel like an emotional basket case. I appear to be coping really well to the outside world, but I wonder if I don't have post traumatic stress. The last 10 months have just really taken there toll on me. I think my brain is just now really processing all that I have gone through.

Now my hip and side have been hurting for the last few days and I am scared it could mean something. How do you know when to be worried? I know everyone gets little aches and pains, but I really worry about my hip pain.

I guess I just needed to vent. I have three children and the youngest is 5. I am so afraid that the cancer will return and I will not live to see her grow up. I think the emotional strain of cancer is worse than the physical strain for me personally.

Comments

  • starbeauty
    starbeauty Member Posts: 327
    edited January 2011
    A friend with BC told me that we all march like soldiers really well... straight through surgery, drains, ports and onto chemo and rads... almost without blinking.  Then it all stops... and it suddenly dawns on us - all we have been through... all that we could still go through... all we could lose... all we have missed in this year of our life that has been sucked away... it all closes in.  We start looking everywhere at what else we should do... to PET or MRI or whatever.  At the very same moment everyone in our lives is clapping... it's all over... you are through it all - aren't you happy?  No... I am freaking scared out of my mind and I am reliving every moment and rethinking every decision and feeling like a train has blown over me.  I feel like you described how I felt 8/10 - when all the treatment stopped... and then 10/10 when I tried to ask a bunch of "what if" questions to my onc and he just ended up prescribing an anti-anxiety med instead of listening to me.  Yup... I hear what you are saying... I feel what you are saying and all I can say is each day it is a little better for me... and if I don't exercise I am much more depressed - so I get on the treadmill more to keep my head in the game than any other reason.  Gentle hugs to you... you will see some sunshine - it just won't be in great supply for awhile.
  • shells43
    shells43 Member Posts: 1,022
    edited January 2011

    Hi Michelle,

    We were diagnosed just about the same time I see, and really, I'm going through the same thing. Add to that my first post-dx mammogram which led to an MRI - talk about scared spitless. I think it will be this way for the first couple of years from what I've read. My onc doesn't do PET, CT scans either unless you are symptomatic, so that is no relief. I just have to assume all is well unless I start feeling bad.  Do see the onc if your symptoms continue. My right hip hurts, too, but it hurt on and off before. I think the AI isn't helping that. I'm trying not to think about it.

    I'm going to try Starbeauty's treadmill therapy...

    Hugs. Hang in there.

  • clariceak
    clariceak Member Posts: 752
    edited January 2011

    Unfortunately, post traumatic stress syndrome is a very real and very common experience for us. Time is a great healer, but I've found that if I continue treatment with exercise or diet, it helps me feel some control over my situation.  I have used anti-anxiety meds for short periods in the past just to break the cycle. 

    There are so many mothers of young children on this Stage III and we all understand your fears.  I think many of us play the "if I can live until.... game".  This is the absolute best place to come to express those feelings and gain support from women who truly understand.  You'll have your bad days, but gradually the volume on the cancer radio will turn down.

    As far as aches and pains, there are so many benign reasons for those symptoms, and they are exacerbated by the anti-hormonals.  I had hip pain before I received by official dx and was worried about mets.  I then realized it was from sitting in the computer chair for too long researching bc. 

    You will get better, but it will take time, so be gentle with yourself  Hugs.

  • Smile_On
    Smile_On Member Posts: 141
    edited January 2011

    Looks like I'm a little behind you in treatments, but recently finished chemo and rads and feeling lots of the same feelings.  I go back and forth with whether I need to let myself cry and grieve or that I should keep myself busy with other things so I don't think about my losses and the what if's.  Right now I think I'm doing pretty well at finding a balance b/w the too.  I don't dwell all of the time, but if I need to talk or cry I do.  This board has been very helpful in that--I didn't find it until I was done with radiation, but that was perfect timing for me.

    Starbeauty I love your quote your friend told you--how true.  If I get brave enough I'd love to put that on my care page blog that I keep for families and friends if you don't mind.  I don't know if I'll be brave enough--to everyone other than my closest family and fiance I put on my happy face and try so hard to be my usual cheery self.  I have had so many loving caring people that are doing their best to support me want to celebrate right after my last chemo, and I had to gently remind them that even though I had my last chemo I still didn't feel great and needed to be careful about germs.  Now I would love to give a gentle reminder that although many of them feel I'm "done," and should stop worrying and get back to normal, that I still have a road of medical procedures, tests, and decisions ahead of me.

  • amlg1
    amlg1 Member Posts: 596
    edited January 2011

    Hi Michele

    I too know what you are going through,I remember the last week of my herceptin,I was so bitchy,cried that whole week.When my last tx of herceptin was over all the nurses were so happy forme.Not me I felt so alone,I wouldn't be seeing them or my Dr. on a regular basis.I cried .I thought "great I am finished NOW WHAT?"I do have to say it did get better.I am now coming up on all my testing and starting to get anxiety.We will get through this.(((HUGS)))

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011

    Your feelings are so normal, Michele.  You've been following a consistant schedule of treatments and followups and it's been such an overwhelming thing to be so actively involved with fighting this beast.  Now suddenly it's come to an end, all those regular scheduled visits and treatments. I remember I had felt overwhelmed when I finished.  I posted my feelings also.  I started this :

    I SHOULD BE HAPPY, BUT I'M NOT   I posted this on this forum and if you read it you'll see you are not alone in your feelings.  I also think you probably have Post Traumatic Stress from all you've been thru. Give yourself permission to have these feelings and focus on knowing that though you've finished Chemo and Rads, you will be checking in with your onc continually and will be followed still.

    image

    Barb

  • Arayasunshine69
    Arayasunshine69 Member Posts: 50
    edited February 2011

    Hi Michele, when I read your post, I thought I was reading something I wrote...but then I got to the 3 kids part, and I only have one.  I ended radiation Jan 5.  I take Tamoxifen, and will continue with the Herceptin until July.  I got the results of my bone and CT Scan last week.  I just started taking Effexor, it's mostly for the hotflashes SE, but it should help with my anxiety issues too.  I have alot of anxiety, and bad days.  It's hard to have a normal conversation with my heallthy friends, and I isolate myself alot.  I am trying to get myself out of this dark hole, but the cold doesn't help.  I try to walk everyday, if it's too cold outside, I hit the mall.  I'm thinking about joining the Y with my daughter, so I could start swimming again, and put my daughter in daycare while I'm swimming.  I feel like I don't know how to function normally anymore.  I think about socializing with other people, and have near anxiety attacks over it.  I have alot of joint pain, mostly my lower back, hips and left knee.  I have arthritis, and I get upset not knowing if my pain is from arthritis, drug side effects, or more cancer.  It's very frustrating, and unless you have experienced cancer, then it's hard for healthy people to understand your pain. 

    HUGS to you. 

  • Kathleen26
    Kathleen26 Member Posts: 210
    edited February 2011

    You've heard a lot of good advice here, which I can only repeat.  I found the mental battle a lot harder than the physical one during treatments and after.   It was tough some days managing my mind and trying to keep myself from collapsing in a puddle of fear, much harder than managing the SE's of treatment.

    I found keeping busy with things besides researching BC on the internet, and exercise to be huge helps.  I still have my bad days, when I hear or read something that scares me, or a new little ache or pain, that starts the scariness all over again.   Being scared leads to insomnia for me, and lack of sleep gets a bad cycle going.  An occasional Xanax helps me manage that.   I don't think that anyone that hasn't been through this themselves or with a loved one can understand what this is like.

    I don't think that doctors understand the toll that it takes on people, and many doctors don't know how to help their patients handle it.  I think it is a form of PTSD as you suggest, and there should be more counseling available for cancer patients to help them with the emotional issues.   You are definitely not alone.

  • karen1956
    karen1956 Member Posts: 6,503
    edited February 2011

    we seem to hold up through the "crisis", then we fall apart....what you are feeling is normal.....through Dx and Tx, we seem to just move along on autopilot and when we are done Tx and have time to think about things, it his us....counseling and anti-depressants have helped many of us, me included.....Congrats on finishing rads...

  • diana50
    diana50 Member Posts: 2,134
    edited February 2011

    trust that the treatment worked...and will continue to work for you.  congrats on finishing up rads. hang in there.  it is hard to finish the bulk of the treatment; but know that you have responded and will do well. *

  • Racy
    Racy Member Posts: 2,651
    edited February 2011

    Hi Michele

    I was diagnosed in October and have just had my second chemotherapy session.  I have felt very aware that I was suppressing my feelings about my diagnosis and that this was unhealthy with the prospect of PTSD down the track.  For this reason, in addition to other suggestions that the ladies have made such as exercise (I have just started yoga) and improved diet, I have commenced counselling.  Where I live in Australia I can access six free sessions through the Cancer Council and/or free sessions through the breast cancer support service attached to the hospital.  We can also access subsidised sessions through the medicare system so I am planning on continuing counselling as long as I can through these avenues.  It really helps to talk with someone who specialises in cancer.  I hope you have these types of services available to you and I would encourage you and anyone to try and see if it helps.  

    God bless you. 

  • crystalphm
    crystalphm Member Posts: 1,138
    edited February 2011

    I am reaching the anniversary of cancer and mastectomy...and the anxiety is terrible. I am reliving so much. When I was going through it, I just did what needed to be done and worked hard on my recovery, but now there is time to think...and it is scary.

    Up until now I didn't think I needed a support group, because I was so busy with dealing with getting rid of the cancer...and now I just feel anxiety all the time. I agree, this is a form of PTSD, one that I hope time will ease.

  • caaclark
    caaclark Member Posts: 936
    edited February 2011

    Hi Michele,

    When I was diagnosed my children were 4, 6 and 8.  All of us here understand what you are saying and I can confirm that what you are feeling is COMPLETELY normal!!!  The women who have already posted have given great advice and insight.

    I also felt terrified when treatment ended.  I ended up seeing a counselor who specialized in cancer treatment and its aftermath.  I cannot begin to tell you how much that helped.  I was treated at a cancer center in NJ (CINJ) and the counseling was free.  I could even go now if I felt that I needed to.  Because I had 3 young children I hesitated going.  I felt like I needed to make up for the time I spent in treatment.  But then I began feeling alone and scared.  I really started disenging with my girls.  I was there physically but mentally I had sort of checked out.  I looked completely fine, socialized with a smile on my face but was really struggling internally.

    What I learned was that if we do not process the fear early on it will resurface.  Many of us (esp. moms) just go through the motions in order to survive treatment and create a sense of normalcy for the kids.  It's almost like our bodies can only deal with one assault at a time. 

    Know that what you are feeling is expected when treatement ends!

  • DCMom
    DCMom Member Posts: 624
    edited February 2011

    Ditto Ditto Ditto-  This is all so "new" normal.  It does get better and eventually you will have some "old" normal days.  I have always called it Post Traumatic Breast Disorder and it is definitely normal.  Three years out and it occasionally still hits, but it is a much rarer occasion.

  • Tg5471530
    Tg5471530 Member Posts: 111
    edited February 2011

    Diddo to everything said.  I have my last Rads in 3hoursm then surgery for my overies and gallbladder taken out on the 16th  I will have 5 yrs of meds but no more daily or wkly trips to make sure its not growing or getting smaller.  I also have 3 kids, almost 5, almost 7 and an autistic 9 yr old.  I am now also getting a divorce from my husband and because I was too sick with chemo I gave him the home (rental) and he has full physical custidy of the kids.  now i have till june to find a place to live on a ssi budget,  not easy.  but I want my kids back and get our lives as close to normal as possible.  But the fears and obsessive thoughts about my friends who didnt make it make it hard to move on.  I do see a therapist and she is great,  I just think you have to go through it to understand it,

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