New to posting... and wanted to say thank you...

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mom2twins34
mom2twins34 Member Posts: 185
edited June 2014 in Stage III Breast Cancer

Hi Everyone,

I'm new to posting and just wanted to start off by saying thank you...  Since my diagnosis last year, so often when I've had a question & searched the internet, a breastcancer.org thread pops up & I find the courage I need to face the next challenge.   

Reading your posts has helped me a great deal, especially lately.  I think that until a few months ago, I just assumed that I would survive regardless of what anyone said & only in rare moments did I let myself think about not making it.  And now I find that I can swing from "I'm going to live" to "I'm going to die" and back and forth and back and forth all in the same day.  Why am I questioning things so much now?  Is it because I'm less in denial now?  Is it because I feel less "safe" in this phase of treatment (radiation, herceptin, tamoxifen)?--I do admit that I felt more assured about my survival when I was in the throes of chemo.  Or is it because of this constant pain in my hip that I keep thinking is more cancer, but that I can't seem to manage to tell my onco about?  I try to be positive and pretend that everything is fine & that I'm doing okay for everyone around me who is counting on me to be okay, but sometimes I just feel like I'm unraveling!  Are these feelings normal???

Sorry, I meant to just write & say thank you & to tell you how much you've helped me--even without me posting a word--but I've managed to make this post all about my stuff!  I guess I've just kept it bottled up for so long & it's nice to feel like I'm in a place where I might be able to share my real feelings...

Sorry for the long post--and thank you for all of the strength you've given me without even knowing you were giving it!

Comments

  • Latte
    Latte Member Posts: 1,072
    edited March 2011

    hi there,

    welcome and well done for taking that first step and posting here! this is definitely a great place to share your feelings, get help, and give it to others. i see that we were diagnosed more or less the same time. I think we all deal with BC differently - personally, i try not to think about the big questions like "will i or won't i make it?" and deal with day to day issues instead (I was like that during active tx too).

    can you find a local support group? i think the support on this board is amazing, but i also like to meet face to face with other women who are going through this. i think that both are a good idea.

    i've seen a few people on the board with hip pain, and it may just be a side effect of medication, or an after effect of chemo. but if the pain has been going on for more than 2-3 weeks, i think you really need to bite the bullet and talk to your onc about it so you can get it checked out. i know it is scary, but either way i think you are better off knowing.

    as to your question "is this normal" - i think that everything is normal now :-) you will get beyond your current feelings, and get your life back together again. have you looked at the stage 3 thread for people 5-years out from dx? i find a lot of inspiration there - not just that people are surviving, but that they are living their lives and moving on.

     hope to see you posting more and feeling stronger :-)

  • KerryMac
    KerryMac Member Posts: 3,529
    edited March 2011

    Welcome! I am glad you have decided to start posting, I was nervous at first too, and my husband made me. Best thing I ever did.

    What you are describing is completely normal. I think we all have the shock and horror of Dx, but then come to terms with things and settle into Chemo, then when that is done all the fears come back. It is something you do come to terms with, it just takes time.

    Hang in there, keep putting one foot in front of the other, you sound as though you really are doing pretty well. And post here whenever "the crazies" get to be too much!

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

    hang in there and come here often.  post your questions and worries.  we will be here for you.

    never give up...one day at a time.

    hugs

  • pupfoster1
    pupfoster1 Member Posts: 1,484
    edited March 2011

    Hi Sweetie!!!!

    I want to give you a big hug right now!!!!  I feel the same way you do a lot these days.  I go back and forth from feeling upbeat and positive about my future, and then to that "dark" place where I have myself convinced a new pain is cancer.  I think it's pretty natural.  I mean how are we supposed to know what is a "normal" pain for us anymore???  And I felt the same way, that as much as chemo sucked, I felt like I was doing something active to fight it off.  

    I had multiple tumors too, w/my primary one being 6.5cm, 13/15+ nodes w/extra capular extension as well.  I believe we have EARNED the right to be nervous.  But we have to try to grab TODAY and not try to worry too much about the "what if's" (now if I could practice what I preach, right?).  

    These ladies have been my rock when I just cant' figure it all out.  We'll be here for you too!

    Feel free to PM me anytime if you'd like.

    (((HUGS)))

    Sharon

  • clariceak
    clariceak Member Posts: 752
    edited March 2011

    Welcome

    I'm so glad you've decided to post. When I had a lump, but was not officially dxed, I had hip pain on both sides.  I was beginning to convince myself I had bone mets, and finally realized I had been spending too much time in the computer chair with Dr. Google.  Another reason to stay out of his office.

    There are so many reasons for hip pain, especially when our treatment has aged us almost instantly.  Of course if it is getting worse and bothering you it is best to get it checked for peace of  mind.

    This is the absolute best place to come to voice those feelings of doubt and you'll feel so much better once they are out in the open with women who truly understand.

  • DCMom
    DCMom Member Posts: 624
    edited March 2011

    Hey hip pain is the first false pain I flag to my oncologist and it was nothing.  If you look around this site for a while it seems to be one of the most common aches and the hips are a big joint area that tamoxifen seems to hit.  That being said I also think if it goes on you will feel a lot better once you tell your oncologist and he/she lets you know it is nothingSmile

    I love hiding my head in the sand so this is actually quite hypocritical of me to say, but every time I have finally bit the bullet and flagged something to my oncologist I have left kicking myself for waiting so long and worrying so unnecessarily.  You will slowly learn to trust your body again and to recognize an ache you have already had from something else.  I remember panicking over a back ache for 2 days until I correlated it with the fact that I had rearranged a room and had been lifting heavy furniture.  Even did it 4 days ago waking up terrified about my back hurting again until I remembered I had cleaned out the garage the day before...

    Anyway welcome to this forum and all our crazy mental games in person.  I'm so glad we are all here supporting each other through this CRAP! 

  • jennyboog
    jennyboog Member Posts: 1,322
    edited March 2011

    BC.org has been my saving grace since my dx, so I know how you feel.  I was a complete basket-case after dx. and still are somedays!!  I also have hip pain & knee pain in my right leg and they did an x-ray and said I have arthitis.  Which I knew I did b/c I had problems before bc and I was told all the chemo/meds just make it worse.   I'm sure you'll feel better if you just mention it to your dr.  It's an emotional rollercoaster ride for us all, your feelings are completely normal.  I also had mutiple tumors, my whole breast was infected.  Hang in there sweetie, we're here if you need us.  Thanks for posting and don't wait so long next time. Smile

  • mom2twins34
    mom2twins34 Member Posts: 185
    edited March 2011

    Hi girls,

    Thank you all so much for your wonderfully supportive posts.  I don't know why I waited so long to post.  Connecting with other people who actually understand what I'm experiencing has been what's been missing from this "journey".  I'm glad I'm here now--you've all made me feel so much better.  Thanks for reaching out to me and making me feel a lot less neurotic!--and a lot more understood!  Smile

    Thanks for your comments about the bone pain, too--I'm sure it's prob nothing, though I'll take your advice & mention it to the dr.  I have a standing appointment with my onc every week, so I think you've given me the guts to say something--if not during this week's appointment, then I have no excuse not to do it by the next week's!  :-)  I think I'm afraid to say something because 1) I don't want to find out it's more cancer and because 2) if he does testing & we find out it's nothing, I don't want him to take me less seriously in the future if I have another concern--which I'm sure I will!  I know I just need to do it anyway, but I think I got so complacent with my doctors in the past, especially when I first found my lumps and was told that I was too young for them to be anything & not to worry about them (which I see from this site that I'm soooo not too young!)--and the same thing with a lymph node in my neck--that I'm still not really sure how to deal with doctors or to ask for what I need without feeling like I'm overreacting to a symptom.  You'd think having cancer would at least free me from that feeling, but I guess not! 

    Thank you so much for making me feel so welcomed & understood.  Between reading the "You know you have cancer when..." thread and laughing so hard that I almost wet my pants  AND reading your wonderful posts, I'm having a much better day today.  You are all wonderful!!!

  • thefuzzylemon
    thefuzzylemon Member Posts: 2,630
    edited March 2011

    These boards have been a blessing, a teacher, a therapist, a friend maker, a shoulder/ear/backbone, an advisor, a networker, and most recently - a comedian Wink (shout out to my asparagus buddies) ... in every part of every need that I have had on this journey ...

    I am so happy you were able to find what you need.  Don't forget to PM those who touch you the most ... or have similar diagnosis ... or just make your heart sing ...

    Hugs and a smile.

    Copied from my earlier post .... too sleepy to recreate ;)

  • gillyone
    gillyone Member Posts: 1,727
    edited March 2011

    Glad you found us. Keep posting - we are all here to help any way we can.

  • jenn3
    jenn3 Member Posts: 3,316
    edited March 2011

    Glad you finally posted........I lurked for a little while before posting as well.  The women here are wonderful, smart, funny, compassionate and "get it".  It really does help to be able to talk to people who are going through the same thing you are going through.

    I have had a LOT of hip pain since being dx'd and going through chemo.  I recently went to a PT and he gave me some exercises or stretches that really help.  The easiest one and one that I've shared with friends and works well is a simple stretch.  Lay on your bed with both shoulders on the bed, hang one foot off of the bed for 3 or 4 minutes - it stretches the hip area out.  Repeat on the other side as well.  If you want to get a better stretch, pull the leg on the bed up to your chest.  That with some regular stretches relieves a lot of the discomfort in the hip area and is simple to do.

    (((hugs)))

  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited March 2011

    mom2twins34 -

    Welcome!  I'm glad you have found good things from these boards.

    To tell the onc or not?  I hear you on that one.  Here's my story.

    During my chemo trial I also participated in an imaging study involving PET scan.  By the time I was done with neoadjuvant chemo I had gone through many scans (MRIs, PETs, mammos, USs, DEXA, bone scan, CTs).  The worse part was the PETs kept doing false positives and we had to chase down the last set down to a colonoscopy and never figured out the thickening in the cecum.  But I was done and told him lets leave it alone unless I have symptoms.

    About 5 months ago I was getting a pain in my clavicle area.  It would come on suddenly and hurt for maybe 5 minutes or up to 20 minutes.  The type of hurt that I responded by rubbing it - it would just ache for seemingly no reason at all.  And on top of that, I had these tender spots under my cancer armpit and down the side where I had the lymph nodes removed.  So I mentioned it to my onc thinking that he would explain what was causing it and I would feel better.  Nope.  X-rays.  I'll get the results when I see him the following week.  Well there wasn't any scanxiety involved because in my gut I just knew that the scans would be clear.  And they were.  But it bothered me that I just had another scan that wasn't needed and, sure enough, the pain disappeared after that.

    My last visit was right after my check up with the BS.  Well I had major issues with my shoulder - it had really gone backwards and my range of motion was poor and it hurt to do anything.  The BS wrote me another script for physical therapy.  So I'm explaining the results of the BS visit to my onc and he starts asking me about the pain.  I see the look in his eyes.  The concerned look which is telling me his brain is thinking "Which type of scan would be best?".  So my quick response is "The pain is here - right in the joint.  It's the joint - not the bone.  I'm positive it's just a joint issue and PT will help it."   Whew!  Got passed the need for another scan but it took some convincing on my part.  The guy really cares about me and knows me well enough to know that I'm don't complain and then expect him to do something about it.  I've had enough drugs and scans!

    So that brings us to today.  I rescheduled my onc appt for tomorrow instead of the 21st because this last month I been hit with daily fatigue.  Really affecting my work and I've been very close to go home or calling in sick.  I really need to do something to help the fatigue.  Then yesterday I got this weird aching pain on the left side of my chest below the mast area. As I was rubbing it I found a pinpoint spot that gave me a sharp pain.  So here I go again.  Do I tell him or not? 

    I think I will tell him but I'm also going to ask him to explain to me what it might be.  That I don't want a scan unless he really, really, really is concerned.  Sigh.

    So this is a very long-winded way of saying that, yep, we totally understand.

  • mom2twins34
    mom2twins34 Member Posts: 185
    edited March 2011

    Hi Girls,

    Thank you for all of the support & for making me feel like I'm in great company!...  I wish I hadn't waited so long...

    Jenn3, thank you for the advice~~I will give stretching a try (right after I leave the computer, actually).  I'll try anything to see if it will make the pain disappear before I have to talk to the onc.  :-)  I hope you are getting some pain relief with the PT.

    Sorry to hear about all of the fatigue & pains, anacortesgirl.  Good luck at the onc tomorrow.  I think I would mention the pain, too--though, as you can tell from my posts, I don't always take the advice I offer!

    I hope everyone had a nice weekend.  Thank you all again for such a warm welcome...   

  • americanpinay
    americanpinay Member Posts: 338
    edited March 2011

    Hi...I too vacillate between "I will survive this" and "OMG, I'm gonna die from this stupid disease"... my goal is to minimize the trips to the "dark" place and hope that someday I won't go overly crazy about every little ache and pain...actually, now that I think about it, my hypochondria (self-diagnosed) got a tad better after BC diagnosis either because I stick my head in sand more or because I now understand that aches and pains don't always mean cancer (had all sorts of scans that turn out to be nothing)...take care... 

  • mom2twins34
    mom2twins34 Member Posts: 185
    edited March 2011

    Your post made me smile--especially the "hypochondria (self-diagnosed)" part. :-)  It's funny, I use the word "vacillate" every time I talk (to myself) about the living/dying question that I try to pretend I don't think about--but I do...  

    Though I find myself feeling like I didn't listen to my body enough when it was trying to tell me something really important, so now I should listen.  But then I wonder if I'm paying too much attention to make up for lost time.  And add in all of the side effects from the stuff that we've all had done / taken, etc., and geesh!!  Who knows what is normal anymore?  Or what to pay attention to...  There's a fine line between attentive & neurotic--and ever since I finished my last chemo phase, I feel like it's much easier to stumble onto the neurotic side.

    I'm grateful that I can at least share these feelings with people who understand now, though...  It feels like a huge weight has been lifted off my shoulders.  Thank you all!...

  • DCMom
    DCMom Member Posts: 624
    edited March 2011
    Weightlifting is oa great exercise to strengthen the  bonesLaughing  
  • mom2twins34
    mom2twins34 Member Posts: 185
    edited March 2011

    Thanks DCMom...  I wasn't sure if I could do that with lymphadema--I guess I'll have to ask.  I'm sure little weights must be okay?--They're lighter than the kids!  Smile

    thanks! 

  • DCMom
    DCMom Member Posts: 624
    edited March 2011

    Mom2twins-  

    Oops I guess I wasn't clear.  This was a double entendre.  You had said  "It feels like a huge weight has been lifted off my shoulders." and I replied that "weightlifting is a great exercise to strengthen the bones".  What I meant was that you will find that in this process we all strengthen each other.  In hind sight very cryptic, but.... 

    OK, that being said weightlifting is actually an excellent choice with lymphedema.  There is actually a crew team here in DC for BC survivors and they are finding more and more that exercise and usage actually prevents lymphedema.  It's important to recognize that this doesn't mean to overdue.  Begin gently and really listen to your symptoms.  If you have lymphedema there may be a whole new set of rules.

    My physical therapist has actually done extensive research in this and she says there is nothing I can't do physically as long as I am diligent about not overdoing. I don't have lymphedema, but she measures my arms every time I go in.  I wear a sleeve when I run because I find that is when my arm tingles the most, but since I am numb all the way from my arm pit to below the elbow I also have to realize that it has some of that "novacaine numbness" tingle anyway.

    Exercise is the number one, best thing, you can do for yourself physically and emotionally.  Guess now that I said that I'd better get out for a run...

    Now have a great day! 

  • lkc
    lkc Member Posts: 1,203
    edited March 2011

    Hi There. I came here occasionally now to give support. but back when I was dxed this was my lifeline. Your feelings are normal. It does get better the further away you " are".

    BC will revert to the back burner of your life eventually.

    Be gentle  with yourself ,it will get easier.

    I am almost to my 6 yr mark and doing great!

  • mom2twins34
    mom2twins34 Member Posts: 185
    edited September 2011

    Thank you DCMom and Ikc--don't know how I missed your posts so many months ago, but thank you for your words...

    And thank you to all of the wonderful ladies on bc.org.  Even though I don't really post, I often check in to see how you are doing & come here to read your stories for the comfort of knowing that I'm not alone.  Thank you all...

    Sending good thoughts to you!  :-)

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