Take our poll: Caregivers, what do you find most difficult about caregiving?
Weigh in: What are the best and worst gifts for people with breast cancer?

Why was I stronger DURING treatment than I am now?

1…122123125127128…136

Comments

  • SmartassSmurf
    SmartassSmurf Member Posts: 89
    edited February 2016

    JJ, I am sorry you are still waiting & have not gotten your results. No idea how to take that kind of comment from the doc. The drinking stuff sucks. That is hard enough without everything else you have on your mind. I hope you and your family are able to work through all of it into a good resolution for you all. I have included you in my prayers.

    2tabbies how did the appointment go with your MO?

    Thanks for the positives on my results & deportation. I am more sore than I thought I would be from the port, but I am hanging in there. I have been really tired these last couple of days. I am so ready to rest for the weekend.

  • Lily55
    Lily55 Member Posts: 1,748
    edited February 2016

    JJ - do you have blue light bulbs or daylight lamps in your house?  An hour in front of one of those each day would help your husband but mainly he needs to man up and deal with his own stuff....

    As for your Doctor - wow they really need to be confronted with their own worst fears in training to understand how much impact they have and to be a bit sensitive........it may well be that he just does not really know exactly what it is..........

    Hoping you get some answers son

    Wishing everyone a great weekend.......

  • 2Tabbies
    2Tabbies Member Posts: 927
    edited February 2016

    Smart, I love your "deportation" comment. Too funny. I hope the soreness resolves soon.

    My appointment with my MO went ok. I don't know what he thinks. He never acts very concerned, but he did order a bone scan. That's scheduled for Monday. So it's my turn to play the waiting game with JJ, Lili and others. I'm not consciously very worried. I could easily write my symptoms off as other stuff. Maybe I tweaked my back and just don't remember doing it, etc. But my subconscious mind is probably going crazy. We'll see what fun dreams I have over the weekend.Scared

  • LiLi-RI
    LiLi-RI Member Posts: 160
    edited February 2016

    So, I believe that the lung biopsy on Tuesday was the worst yet! OMG. I had to stay perfectly still for 3 biopsy and 1 hour of terror! What I know so far --- my right lung still has fluid and it has been partially collapsed. The initial report states: refer to pulmonary dr. I am waiting for pathology. Wouldn't you think I would be taken to pulmonary department at BWH? No. I am now.....waiting

    JJ and Wintersocks: Sending healing hugs! JJ it takes all our strength to get through this process. I believe I have aged 10 years since diagnosis in 2013

  • 2Tabbies
    2Tabbies Member Posts: 927
    edited February 2016

    LiLi, I'm so sorry the lung biopsy was so traumatic. I sometimes wonder of this is a health care system or torture system. I hope you get word on the pathology and and appointment with a pulmonologist soon.

  • LiLi-RI
    LiLi-RI Member Posts: 160
    edited February 2016

    thank you 2Tabbies.....

  • enjoyevrymoment
    enjoyevrymoment Member Posts: 239
    edited February 2016

    I love the William Hurt movie where he plays a physician and he becomes a patient and how much it changes the way he practices. They should make that movie required viewing for anyone in medicine. Lili-Ri sorry you had to go through that. Glad it is over. Praying for next steps...

    Waving hi to everyone else and hoping you all have a great day xo

  • wintersocks
    wintersocks Member Posts: 434
    edited February 2016

    Li-Li-RI,

    I hope you are ok after that horrible procedure. Thinking of you and sending love across the water.

  • Lily55
    Lily55 Member Posts: 1,748
    edited February 2016

    lili, that sounds horrendous........I would like to see that William Hurt movie as compassion seems sadly lacking in too many doctors

  • jjontario
    jjontario Member Posts: 156
    edited February 2016

    Hi Everyone,

    LiLi...that procedure sound horrible...sending you hugs.

    Wednesday is the big day for me. Breast biopsy and results of this pelvic mass. The biopsy is going to be a kicker. ...the stereotactic machine has me sitting up..not prone and this breast is so friggen tight from rads plus I have a big implant in there. It's barbaric.

    DH has not had a drink since last Monday. He is antsy and quiet. I didn't know how bad it was until I really looked at him this weekend...I am worried he can't do this on his own. In 24 yrs together we've never been in this kind of place. I look at him and I know I love him but this is serious. His family just wants to pretend all is good...life has been so wrinkly for a while and I have always made things smooth..but I'm tired. Robin Williams had a quote about a pretty fake smile is all it takes to hide how broken you are and it's so true.

    Work is also giving me a headache because I'm off again. I get such anxiety when they call that it ruins my day. I need thicker skin. On a positive note...I started making my daughter a quilt and I love it. All self taught from YouTube...I don't sew but I needed a productive escape. I know I need to get some counselling. Just too much stress but..I think I'm subconsciously waiting for Wednesday...Whyis it so hard for me to make that call???


  • Lily55
    Lily55 Member Posts: 1,748
    edited February 2016

    I am off on the rollercoaster again, tests for intestinal / colon cáncer..........symptoms for a few weeks........

  • jjontario
    jjontario Member Posts: 156
    edited February 2016

    Oh Lily...this roller coaster is so not fun...but you're not riding it alone!!!

  • Lily55
    Lily55 Member Posts: 1,748
    edited February 2016

    THank you and No thats why I posted it here.........how are you doing?

  • wintersocks
    wintersocks Member Posts: 434
    edited February 2016

    Lily, Have you soon a medic about this?

    jjontario, here with you x

  • marijen
    marijen Member Posts: 2,181
    edited February 2016

    JJ Amazon has a great book, Beyond Addiction. You can get it in CD form for $1.82. There is a kind way to deal with your husband

  • etnasgrl
    etnasgrl Member Posts: 185
    edited February 2016

    Hi everyone!
    I'm jumping into this thread because I am entering my final week of rads and then I'm done and out of active treatment. My MO will be putting me on Tamoxifen once rads is done, but other than that, I'm finished.
    I'm really very anxious about this next chapter in life. How do things go back to "normal" and just what is normal, anyway? I'm a different person now than I was just a few short months ago, before cancer reared it's ugly head.
    I feel safe while in active treatment. I know the cancer is gone right now....but I won't have that safety net once it's over. How do I move forward without giving in to the constant fear of recurrence?

    Anyway....just trying to sort a few things out this last week of rads. Thanks for listening!

  • enjoyevrymoment
    enjoyevrymoment Member Posts: 239
    edited February 2016

    etnasgrl, you will be surprised how much support you can find on the boards. People don't always remember every thing about every person but we all try to help each other. Your new normal post treatment is so variable, we are all different and handle things differently. My friend was the same dx as me and she was euphoric after it was over and made a whole lot of changes in her life regarding multiple issues: job, home, relationship. Later she kinda crashed a bit but now is doing great with a balance. Some people have like a PTSD of sorts right after it is over. Just work through it, see a counselor if you can find a good one if you need it, and share with people who understand. :)

    I am certainly not a know it all about it just sharing my experience. Best wishes to you.

    Lily55 I had the test for that last week and awaiting biopsy results. Dislike that test but glad I did it of course. Praying for you that all goes well.

    JJ I love to sew, my hat is off to you for tackling quilting, I wish I was good about that. I am sure it is satisfying to work on it! It will be lovely no doubt! Praying for your biopsy and results on Wed. So glad the hubs is doing a bit better. Lots of dynamics going on with you right now you are probably about numb from it all.

    Have a great evening everyone and know that I am thinking of you all.

    Cindy


  • 2Tabbies
    2Tabbies Member Posts: 927
    edited February 2016

    JJ, you are probably right about your hubby needing help. Addiction is hard. I hope he goes to AA for finds some other treatment. I sure wish your work would leave you alone. Good for you for taking up quilting! My relaxation crafts are crocheting and knitting. There's even a BC support group on a yarn crafting social media web site.

    Lily, I'm sorry you have something else to deal with. I'm in the same boat. I had a bone scan today to see if the back pain I've been having is bone mets. Let's hope no cancer for either of us. {{hugs}}

    etnasgirl, I'm glad you found us and hope we can support you through the transition out of active treatment. You hit the nail on the head - how do we get back to "normal" and what does that even mean. I think the answer is we get there one day at a time and it's a bit different for everybody. I tend to not worry about a recurrence on a daily basis. But when some symptom shows up that a "normal" person would blow off, I get a wee bit nervous. Hang in there.

  • Lily55
    Lily55 Member Posts: 1,748
    edited February 2016

    i hope they do guve me a colonoscopy as well but for now it's just samples and blood tests, was in ED ten days ago with symptoms and whole belly area just feels urghh. I have no faith in tumour marker tests as mine were normal with stage III cancer!! I am hoping symptoms arejust side effect of Anastrozole as symptoms started within a week or two of starting that.......and just got worse fast. Have stopped taking that now.

    We really do all have to deal with a lot don't we?

    Lets hope we all get clear results........

  • jjontario
    jjontario Member Posts: 156
    edited February 2016

    My gynaecologist appt got changed to this morning as my Dr is delivering a baby tomorrow. This mass appears to be a cantaloupe sized fibroid although it will be biopsied. Because it's so large I will be doing the belly cut full hysterectomy....ovaries and all. Surgery is set for April 15th and will include a few nights in hospital and a longer recovery time. I'm really happy this doesn't look like cancer but I don't really need this right now either. I'm also worried about losing the ovaries...even though it might be good as I was estrogen positive...please don't tell me I will start sprouting hairs on my chin and my girlie parts will dry up like a prune. Will the side effects be like tamoxifen? I can handle hot flushes and I'm going to love having no more periods.

    2Tabbies- hope your bone scan goes well!

    I have my breast biopsy tomorrow. Trying not to overthink things but it's like take away my perfect boobs that I just had done, now my girl parts....like WTH. The only saving grace to this week is my DD is coming home this weekend with her boyfriend. She is my oldest and there is nothing more soothing than time with her!!

    Hugs and thanks to everyone who is riding this wave with me. Your comments and posts mean a lot.

    JJ

  • etnasgrl
    etnasgrl Member Posts: 185
    edited February 2016

    Thanks for the welcome! I'm really looking forward to getting to know all of you better.

    Smile

  • enjoyevrymoment
    enjoyevrymoment Member Posts: 239
    edited February 2016

    Biopsy tubular adenoma so repeat colonoscopy in three months. So glad I was able to catch that. It really is a total crazy process getting stuff evaluated and wondering how many symptoms we never know will be something or not.... I am glad my faith is not in my doctors or my own impressions of what is normal.... it is certainly interesting!

    Hi etnasgirl, hope you are doing well this fine day!

    JJ I literally laughed out loud at your expressed statements, they are valid thoughts but you just tickled me the way you put things :) I did start getting a few side effects from taking Femara but they have settled down. My oncologist is considering me using topical cream for stuff but I see him Friday and will discuss then. Praying for you with decisions regarding surgery.

    Lily and 2Tabbies hope scans and tests are ok. If we could plug the radiation we all receive into a wall outlet we would never have to pay an electric bill :)

    hugs to everyone, off to make dinner, Cindy

  • Lily55
    Lily55 Member Posts: 1,748
    edited February 2016

    JJO - I had abdo hysterectomy........not as bad as I anticipated, worst part was the exhaustion afterwards..........x

  • wintersocks
    wintersocks Member Posts: 434
    edited February 2016

    Thinking of all of you who are undergoing horrible procedures and waiting for results....

    I have come off Venlafaxine by myself (anti depressants) and now I can;t stop crying. I realise those tablets were helping to keep a lid on everything. Emotional numbness feels better.


    WS

  • brutersmom
    brutersmom Member Posts: 958
    edited February 2016

    Wintersocks. Sometimes you have to work through the emotions to heal and sometimes you need the medication. You are strong. You can get through the emotions. Get those tears out and if you find you need to go back to the anti depressant.

  • etnasgrl
    etnasgrl Member Posts: 185
    edited February 2016

    I have 3 more radiation treatments left. Every Wednesday, I see my RO for a check up. Last week, my RO informed me that she would be out of town the day of my check up and I would see a different RO. (I understood, but was bummed as I really love my RO and this was going to be my last check up.)
    I saw the other RO yesterday and left so depressed. He was nice enough but obviously didn't know a thing about me and fumbled through the whole appointment. At one point, he literally sat there staring at me for a good 20-30 seconds. (Doesn't seem long, but when someone is just starring at you, it's like an eternity!)
    At the end of the visit, he taps me on the shoulder, says, "Good luck!", and leaves.

    Oh well. I'll adjust to life outside of active treatment, I think it will just take some time. It's like I'm going back out into the world, waiting for the other shoe to drop.
    I see my MO next week to start Tamoxifen. Maybe once I begin that, I'll feel a little bit better, knowing that I'm continuing to do something to keep the cancer away. (Although I'm nervous about the side effects of Tamoxifen! LOL!)

  • enjoyevrymoment
    enjoyevrymoment Member Posts: 239
    edited February 2016

    Etnasgrl- yeah that would have made me snap my fingers and say "um, hello, I'm right here" or something... last appts can be good things.... Sorry you didn't see your RO.

    Wintersocks, I have often heard where getting off of an SSRI can be good for you as far as then they don't lose effectiveness and when you resume them (if you do) they are better. Cry away, I think some purging of our tears is a good thing. You will know obviously if ya need to hop back on the bus.

    Hugs to all of you and hoping you have a great weekend coming up. I see Onc tomorrow and then go to work so it will be a late day. Had a cry today over some things at work and with my teaching supposed job I am supposed to get which just keeps getting new twists and turns. Felt better after a little blubber and then now I am realizing that all that stuff really can't touch who I am and what I am here to do, so it is onward and upward. Sigh.

    Take care everyone! Cindy

  • LiLi-RI
    LiLi-RI Member Posts: 160
    edited February 2016

    Hi Ladies:

    I spoke with MO on Monday regarding path results from 3 needle biopsies of my lung - her exact words were not enough tissue was retrieved to do a path! Needless to say I have been so angry and frustrated this week. The CT scan did reveal thatt my right lung is collapsed (since November) and filling with fluid. I have known this since Nov? The issue is that I have a mass in right lung. I met with PCP on Tues. My oxygen saturation is very low, so he immediately called in a favor and I am meeting with lung do to on Tues. I have no words .

    Lily55: I am sorry about your cancer scare. I had a similar scare pre-BC, and now I have have colonoscopies every 3 years.

    Wintersocks: withdrawals are so difficult. Why do you need to Effexor?

    JJ: I had total hysterectomy in 2008 at 44 yrs. Recovery is longer since they have to cut through muscle. I would talk to Dr about withdrawal symptoms and fixes for loss of estrogen. I went on HRT immediately after surgery, which is now not an option. You need this information prior to your surgery.

    I am sending hugs - bear hugs for all!

    I feel so lucky to have you all in my life!

    💜💜💜😷

  • LiLi-RI
    LiLi-RI Member Posts: 160
    edited February 2016

    BB: I agree - WTF? I had CT guidance for the three biopsies? There 4 radiologists in the room. Sometimes, I think WHO can you trust the medical field

  • wintersocks
    wintersocks Member Posts: 434
    edited February 2016

    LiLi-Ri,

    Oh what a saga for you, this has been going on for far too long, I think you must now feel exhausted with it all and the lack of answers, is as you say deeply frustrating. how come they cannot give you any explanation for the collapsed lung? It sounds like such an ordeal for you, how awful. I am really hoping things begin to move on Tues for you. Please know we are thinking about you through all of this.

    Lily. Thanks so for your kind words, I really want to come to Spain, I just need to get myself organised, speaking of tummy problems I seem to be having trouble too. I have an appt on the 22nd with my gastroenterologist that I see for my Coeliac dx.... How are you. now?

    BB and LiLi- Ri

    BB I too am not really feeling much benefit from it either, I saw the GP and she said to stay on 2 tablets a day (I don't know what dosage that is). I don't think I will take it as and will do as you decided and I will try to go it alone. Did you ever go back on it?

    I have had depression most of my adult life, probably because of an awful childhood and have been on this drug since 2009.

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.