Why was I stronger DURING treatment than I am now?

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  • julieho
    julieho Member Posts: 222
    edited February 2016

    JJ any news yet?

    Thinking of you.

    Julie

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  • JJOntario
    JJOntario Member Posts: 356
    edited March 2016

    No news yet...although I'm thinking the results must all be in (???). I go home and Friday so I will call them. I really thought my BS might have called even as a courtesy...but she didn't even after my MRI. I'm excited that all must be good but I hated the way my family Dr was so cavalier about it. I don't think I was unreasonable to think it was going to be bad...my BC was at 3 o'clock and the biopsy was at 12 o'clock...really close. Someone must have thought it was suspicious enough to put my through the biopsy??? Ugh.

    Not looking forward to going home (except to see my dogs!!). The next thing on my plate is this hysterectomy and it really doesn't sound like fun!!

    Hugs to all!

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  • Lily55
    Lily55 Member Posts: 3,534
    edited March 2016

    JJO - I had abdominal hysterectomy and it really was a lot easier than I thought it would be, even with vertical incisión, biggest thing is not to life anything, not even a kettle or large bottle of wáter and to rest a lot.  I took one Tylenol afterwards and that was it........I was dreading it and thinking all sorts but have to say just one year afterwards I felt so much better......

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  • Lily55
    Lily55 Member Posts: 3,534
    edited March 2016

    I think I am beginning to struggle emotionally.......had my annual MRI and been told I need another one in 6 months for suspicious área classified as BIRADS3, and have my appt for stomach in April, which I think is too long to wait jsut for an initial appt, things are not right in my stomach, but maybe I am over sensitive everywhere right now, it jsut feels never ending I am at hospital at least every month, often every 2 weeks....4 years out from initial diagnosis now (unofficial).....oficial was in A`pril........

    When does it get easier?

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  • marijen
    marijen Member Posts: 3,731
    edited March 2016

    Lilly, if you call every morning right after eight there may be a cancellation opening you can take

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  • Lily55
    Lily55 Member Posts: 3,534
    edited March 2016

    thanks Marijen, but I don't live in the USA

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  • catlady44
    catlady44 Member Posts: 159
    edited March 2016

    Lily I'm sorry you're struggling emotionally. For me, that often seems harder than the physical stuff. I'd rather be sick than depressed in a way. With all those complications, I'd be surprised if you weren't having a hard time. That really wears a soul down. I've had a bunch of complications post treatment that have really impacted my psyche, but my treatment just ended last September. I just wish they would have warned me about what complications are normal. I know people who've had complications for years after treatment so you definitely are in good company. Sending out an Internet hug to you!

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  • catlady44
    catlady44 Member Posts: 159
    edited March 2016

    Smartass it's been so long since I've read this thread and I don't have time to review all I've missed, but I was curious what heart problems you're having. Is it related to Adriamycin? My heart is doino weird stuff and I'm worried. Almost had to go to the ER yeserday.

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  • SmartassSmurf
    SmartassSmurf Member Posts: 157
    edited March 2016

    catlady, yes the heart problems are related to Adriamycin, and possibly Herceptin. Two different things happened. My ejection fraction dropped from 67 to about 52. The other was that the left side was dilated and had grown in size from 3.9 to 4.8 cm.

    I did not have any symptoms I can pinpoint. In part, because so much other stuff was always happening to my body, you know right? The cardiologist always asks me about shortness of breath, racing heart, pain, fatigue. Both problems were discovered through echocardiogram. I am on Metoprolol for the ejection fraction & Losartan for the dilation. One is a beta blocker and one is an Ace inhibitor.I have been having echos every 3 months, then every 6, and recently was cleared for 2 years. I believe the meds will be permanent. The cardiologist calls them protective meds.

    Hope that info helped & whatever you have going on is easily resolved.

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  • catlady44
    catlady44 Member Posts: 159
    edited March 2016

    Thx for the info! I'm having a very high pulse with relatively normal BP. It got up to 145 one day and my BP was 76/54. My doc freaked. Normally the BP isnt that off.

    With these bodies, it's always something! Ugh!

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  • 2Tabbies
    2Tabbies Member Posts: 984
    edited March 2016

    Lily, hang in there. I agree with catlady that the emotional stuff is at least as hard as the physical stuff.

    catlady, I hope you get the heart issues under control. I was able to avoid Adriamycin. Since my cancer is one that doesn't respond well to chemo, my MO gave me what he called chemo lite. Just cytoxan and taxotere. He didn't think the potential complications from Adriamycin were worth the risk for only a questionable benefit. Who would have thought having a cancer that doesn't respond well to chemo would have an up side.

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  • Lily55
    Lily55 Member Posts: 3,534
    edited March 2016

    I found I had heart symptoms from the Aromastase Inhibitors, especially Letrozole and Anastrozole......and I did not have chemo.   I think its to do with different levels of oestrogen as heart problems increase drastically post menopause.  I no longer take either of these pills.....not looking forward to next meeting with the Oncologist as he will be angry and no doubt give me another lecture on how high risk I am, they are just SO good at addressing the emotional stuff here. 

    I am just feeling sick and tired and totally worn down with thie never ending pain/Discomfort where I used to have a breast and the whole rib cage área around it, nothing helps it, self hypnosis does not work as it does do with other aches and pains as this is always changing in intensity and type of pain.............I really am beginning to feel my life is over, no work, no relationship, no family in same country as me, no money and no reconstruction, I sound like a spoilt child I think but its how I feel, so tired of strugling and battling, feel like all my life I have been on my own really........raised a child alone and that child married  woman who always hated me and never wanted me in his life so now he is not, in any way, four years now almost......no contact at all even when he knew i was being tested for metastastic cáncer.......but then I am not useful anymore cannot give anything, I might need help and that would disrupt his life and require effort, what a success as a mother I was.....

    Happy Mother´s Day to those in the UK


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  • 2Tabbies
    2Tabbies Member Posts: 984
    edited March 2016

    Lily, the behavior of your son does not mean you weren't a good mother. Not at all. Kids do all sorts of things despite the best parenting. I'm so sorry your son has cut off contact with you. Where does the rest of your family live? Could you move there? Would that be an improvement? I wish there was something I could say to help you feel better, but I've never been one of the always positive people. That probably wouldn't help anyway. I'm feeling myself slipping into depression again as well so I don't know what I can say to help you other than I understand. You are scheduled for reconstruction in the future though, aren't you? I thought you mentioned that you were, but it there was a long wait.

    Speaking of feeling like a failure at family relations, my husband had an angiogram today, and has some partially obstructed arteries. I saw this coming years ago, but nothing I said or did motivated him to change to a healthier lifestyle. We can't change others, but that doesn't stop me from feeling frustrated and depressed.

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  • Lily55
    Lily55 Member Posts: 3,534
    edited March 2016

    THank you - guessing your husband will have an angioplasty now? THEy will mkae him change to a healthier lifestyle......

     I wish I was actually scheduled for recon - no I am just on a waiting list to hopefully begin the process.....rules could change between now and then, all sors of things could change this, there is nothing guaranteed about it, and that does not help me..........

    I could not cope with the weather in the UK now although there are things I would miss, all my Friends and life are here...........

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  • enjoyevrymoment
    enjoyevrymoment Member Posts: 334
    edited March 2016

    Lily, I don't think unfortunately that families always have that dang Hallmark experience when dealing with their Mom's cancer. If your son really thought things through I would imagine there would be a different mind set. I am sure you were a great Mom, I mean there is no one among us who had children who achieved sheer perfection, after all. We all did the best we could :)

    I so agree with you about the UK weather, not that I have spent prolonged periods of time there :)

    Take care and hope things get better for you <3

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  • 2Tabbies
    2Tabbies Member Posts: 984
    edited March 2016

    Lily, I hope you get to the head of that waiting list and nothing interferes with getting recon. So frustrating. Regarding my husband, they would have done an angioplasty at the same time as the angiogram if they could have. The one spot that is bad enough to need a stent is in an artery that is too small to safely place one. The cardiologist was afraid he might damage the artery. First rule of medicine: Do no harm. So he said they will now try to "manage his symptoms" medically. In other words, more or different drugs. I hope they also get really firm with him about lifestyle changes. The cardiologist mentioned cardiac rehab but only in the context of making ME feel better and less worried. Excuse me?! This isn't about making me feel better. It's about getting my husband healthier. THAT will make me feel better. Would the doc not have said anything about cardiac rehab if I wasn't obviously concerned? Un-freaking-believable. I can't wait to hear his recommendations in the office visit in a couple weeks. He'd better tell my husband he needs to get his act together health-wise in no uncertain terms. Otherwise, DH won't listen and won't change anything. He sure doesn't listen to me. End of rant.

    enjoyevery, I don't have a Hallmark family either. Not the worst family for sure, but not a Hallmark family.

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  • marijen
    marijen Member Posts: 3,731
    edited March 2016

    No Hallmark family here, never was..... sigh.

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  • Lily55
    Lily55 Member Posts: 3,534
    edited March 2016

    thanks for all your support, latest news on recon is,wait for it, there is at least three more YEARS to wait........

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  • etnasgrl
    etnasgrl Member Posts: 650
    edited March 2016

    Today is a day where the reality of a recurrence is overwhelming me. A recurrence could happen and if it does, it could kill me. My first, (and hopefully ONLY!), battle with this crap was caught early and I did well. Would I be so lucky if it strikes again??

    I've been on Tamoxifen for almost two weeks now. I was pretty anxious about starting it because I had heard all sorts of horror stories about the side effects, but so far so good. As crazy as this sounds, while I'm grateful to not be experiencing any side effects yet, I'm worried that it means the Tamoxifen isn't working. If I don't have hot flashes and other side effects, does that mean the Tamoxifen isn't doing it's job?
    Ugh! I hate how I've let this fear consume me today. Most days, I can push it down and go about my day. Today, it just won't go away.
    Oh well....this too shall pass, I know.

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  • catlady44
    catlady44 Member Posts: 159
    edited March 2016

    2Tabbies, men are the worst at taking care of themselves when it comes to their health! Don't they realize what kind of a mess they'd leave us in if they just up and died, or had a stroke that left them paralyzed?? So frustrating!

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  • catlady44
    catlady44 Member Posts: 159
    edited March 2016

    Etsna girl - I think the Tamoxofin takes some time to build up in your system, so that may be why you aren't having any side effects. My doc tested my estrogen level about a month after I started and every 3 months after to make sure it was doing the job. It is doing the job miserably well! I keep telling myself, it's better than getting cancer again.

    Fear of recurrence is something I live with daily. The smallest physical thing can convince me I have cancer again or that death is imminent. It's kind of turned me into a hypochondriac! I don't want to have beat cancer just to die from some other problem!

    I don't know if any of you know who Uzma Yunus is. She's a survivor and psychiatrist who writes a blog and article for Huffington Post. She's amazing and she just found out the cancer is in her liver now. I've talked to her online, but never met her and yet this news is still tearing me up inside! I'm so ANGRY at cancer! It's tried to kill all of us! Part of me wonders when my time will come. That may sound pessimistic, but I'm trying to face the facts, that's all. I'm hoping it won't reoccur, but as you know, there are no guarantees. I think once a person has faced the very real possibility of death, it's hard to ever get that reality out of the back of your mind.


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  • Brutersmom
    Brutersmom Member Posts: 563
    edited March 2016

    etnasgrl, I think we will always have that nagging question in the back of our minds and some days it will haunt us more than others. I hit my all time low at Christmas. I was so afraid I would never see another one. Each day seems to get better for me. I made a conscious decision to move forward and live life to the fullest because that is what the Lord wants me to do. It bring glory to him. I still have that nagging fear in the back of my mind but it does not rule me anymore like it did when I was first diagnosed. It also helps me that I know people who have survived for many years without a recurrence that had more advanced cancer than I do. You will get passed those feelings. My favorite song since starting this journey has been "Just be Held" By Casting Crowns.

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  • MeToo14
    MeToo14 Member Posts: 493
    edited March 2016

    dtnasgrl, catlady44 and brutersmom, I feel like that everyday. I try my best to live life and be happy but whenever I get a pain I immediately think it's cancer. I've had a pain in my pelvis for about a month now, I have already envisioned having to go through it all over again. I want to go back to how I was and just when I think I'm there, something pulls me back into the negative thinking. I hope you all are well.

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  • etnasgrl
    etnasgrl Member Posts: 650
    edited March 2016

    Brutersmom.....thanks so much! I am very familiar with Just Be Held. I used to listen to it ALL the time when I was first diagnosed. I still like the song, but I overplayed it, LOL!

    I guess I'm so nervous because my mother was diagnosed at 42, was caught early, got treatment, and went into remission. Several years later, it came back as Stage 4 and she passed away at 56.
    Will I follow in her foot steps?? That's what scares me!

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  • Brutersmom
    Brutersmom Member Posts: 563
    edited March 2016

    etnasgrl, That does make it more scary. Have you had any genetic testing done?

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  • etnasgrl
    etnasgrl Member Posts: 650
    edited March 2016

    Brutersmom.....Yes, when I was first diagnosed, my surgical oncologist wanted genetic testing done, given my mother's diagnosis at a young age and now mine, also at a young age.
    The genetic testing came back negative.
    I shared my concern with her about my mother's cancer coming back. She assured me that my cancer is NOT her cancer and just because it happened that way for my mother, doesn't mean it will happen that way for me. She also reminded me that my mom had breast cancer in the 80's and a lot of things have changed since then. Treatment options are different and much better.
    I know she's right....but it's still something that can keep me up at night sometimes.

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  • Lily55
    Lily55 Member Posts: 3,534
    edited March 2016

    Tearful all day, last 4 years just seem to be one long loss and grieving period.....really wonder what I have to live for , my animals are not enough and I find myself gettng tetchy with them, I hate how I am every single day.........I know survivorship is supposed to make us feel grateful, and its a learning process etc......but the reality for me is its been one loss after another, and every day is a battle, emotionally and sometimes physically too as I am never out of pain

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  • 2Tabbies
    2Tabbies Member Posts: 984
    edited March 2016

    Oh, Lily, 3 more years?! That just sucks.

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  • rnssp74
    rnssp74 Member Posts: 8
    edited March 2016

    Oh my gosh! I can so relate. This is exactly what I have been feeling. I have had clinical depression in the past, and what I am feeling is so not depression, it is grief!! I am grieving the loss of the "old me", you know the one who knew the word cancer but never considered it would happen to me. I am grieving the loss of innocence regarding my health. I am grieving the changes in my body. I am grieving the entire situation.

    I was also much stronger during active treatment, as I was always doing, doing, doing. Somewhere to go, something to do. Now I'm just being. I am just being and trying to make sense out of what has happened the last 5 months. The being has been much harder for me than the doing.

    I'm not sure what it means yet to be a breast cancer survivor. I know I will get there, but I am not there yet. I want to rush the process, but I know I have to feel it to heal it! One day at a time.


    Blessings,

    Sara

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  • wintersocks
    wintersocks Member Posts: 922
    edited March 2016

    Lily, I too feel very similar. I can't work out why I don't feel better? we 'ought' to feel better, but somehow don't. I wonder with me if what is wrong now is actually depression and not bc, I mean bc is still there of course, but I wonder if depression is now in the fast lane, and the bc diagnosis running some way behind? I hope that makes sense?

    I am off the Venlafaxine as I seem to have a low white blood count and my GP is wondering if that is the cause, as I have had numerous infections... any one else had this? I am on something else beginning with R. I don;t think it i working as I have felt incredibly depressed all weekend... really down.

    I did meet an amazing woman a few weeks ago and she told me after her son died she made a decision to 'carry on living' and to look every day to finding joy in her life. She forced herself to do that.... She lives with incredible sadness, yet she chooses not to be defined by it.

    I really am not sure what the answer is to where we are both at? I mean how to make things better?

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