Life after treatment--grateful but battered

Hi thanks for this post. I wish I could help but can so relate. We could be Bc twins although my lump was bigger but diagnosed November 2016 stage 2b Grade 3 in 2 nodes I also had ovaries removed and take Anastrozole. I'm not too bad on it but it's the emotional side I struggle with. Like you say every ache is such a worry every headache a brain met etc. I'm terrified of leaving my family and also just want to grow old with my dear hubby. I'm so sorry not to have anything wise to say but lovely to know I'm more normal than I thought xxx

Tlgio, I hear you. I am 42. Diagnosed in 2017 with stage 2B and it has been the worst year of my life. I am cancer free and very grateful that my children (5 and 7) have their mother. It was multiple tumors, very aggressive, spread to my lymph nodes and I had my miracle of complete response. And when people see me and they ask how are you, are you feeling better - I don't know what to say. I don't want to go into all the side effects, but I am not doing any better. I felt healthy while I had cancer and did nit know it. Now I am cancer free, but I feel sick with all the side effects - especially the discomfort from mastectomy (June 2017) and implant (dec 2017)

I chose less surgeries - more risk, I figured easier to live with risk than with some side effects. You have to figure what can help you with your side effects. I spend a lot on my post cancer rehab so to speak - accupuncture, craniosacral therapy. I see a therapist. I took sleep meds for some time. I take medications for brain fog. I did physical therapy, it ran out for now, but I will do it again at a different place. Not sleeping was brutal, finally I am sleeping it made a big difference. I think it's ok to take meds to help with sleep after cancer, maybe it is only temporary. Therapy is a must and someone who either specializes in cancer and breast cancer in particular or someone that you just click oh so well despite them not being a specialist in the area you just trust them.

I am thinking of converting from implant to a DIEP, will get a CTscan in 2 weeks to see if I am a true candidate. It's a big surgery and I scared, but I got a lot of questions answered here that will help me make my decision. Thank you all the ladies who answered my questions. I was watching the DIEP on large screen TV yesterday - fun...not!

AliceKo—- you said what I have been feeling—-that you felt healthy before cancer dx and now that all the treatments are completed, you feel sick with a bunch of side effects..... wow, that is SO how I feel. Got thru all the main treatments in 2017 but sure don’t feel like I did prior to dx. Hands ache from AIs; long hair is gone, slowly replaced with short chemo curl hair; nails are scarred; skin is drier; eye lashes and brows are not back to pre-dx state; and fatigue from 4 surgeries, chemo, and rads in a year is slow to go away.

I worry about recurrence or mets. Have already had 2 lumps biopsied this year (b9!!) Just want to be able to fully return to my life. Glad to be alive but looking for continued improvements

Dodgers girl, 2 lumps biopsied since? That is anxiety provoking. Returning to my life may be returning to my new life. I just don't know if it will ever be the same. But I know it can be good. I can't feel it right now, but I know it is there. maybe when the final surgeries will be performed and I heal physically, maybe I will let my mind heal with EMDR or gentle reprocessing, it will process the trauma and make a new meaning that will allow me to move on.

Well put tlgio17! Thank you for putting into words how I am feeling as well. I am in the radiation phase of my treatment and will be starting Arimidex soon, as I just got a Zolodex shot to suppress my ovaries. One thing after another and now years of a pill that will cause more havoc on my body. Yet I too answer "I'm doing great" when anyone asks how I'm doing. I don't feel like getting into a discussion of how I really feel. I try to repeat to myself - one day at a time. Hang in there!

Hello Fellow Breast Cancer Warriors,

I was diagnosed in August 2015. Triple positive, grade 3 tumor. Had surgery in October, started Taxol and Herceptin in December, had about four weeks of daily radiation in April 2016, and continued the Herceptin once every three weeks until the end of December 2016. I was not given a port and the nurses could never find my veins sometimes it took eight or nine attempts to get the IV into my arm. Along the way, I developed a lipoma in my upper right arm, I developed a frozen shoulder on the right side, still painful. I've had lymphedema of the breast that was operated on, and I was burned and blistered from the radiation!! I also contracted a yeast infection of the breast. I have not been the same since treatment started. As someone said "this is the new normal"! I still have neuropathy in my feet, especially the left side. My nails don't grow properly. I was fortunate that my hair came back. As many of you say, you don't know what to say when people say "how are you feeling?"

Now I've shown endometrial cells in the Pap smear and have to have a biopsy. This could be a result of the tamoxifen. I wasn't placed on an AI because I have osteoporosis. And to top it all off, I fell and broke my knee in the fall, wearing a brace from my thigh to my ankle, taking care of myself alone. I only took two weeks off from work, and then was going to work walking in the ice and snow with crutches. Cancer sucks there's no getting around it! I imagine my bones weakened even more due to the treatment. Anyway, that's my story. I am still here, but I worry about the uncertainty. Wishing you all the strength to get through this challenging time in your lives! 💕💕

OMG, this is so true. And most people do not understand.

I've heard, you are cancer free move on with your life. It's not that easy. And trying to explain it to them is worthless.

First I want to say I am profoundly grateful I saw your post. I'm sad for you, tlglo17---- wish I could reach out and hold your hand. I can't hug you ( or anybody else) yet; I'm exactly 3 weeks post-op, but please know if I could I'd hug you tight and long.

So, right about here is where all those inspirational folk insert their brave and hardy statements about survival and getting through it, etc etc. This is the point where they start wearing their pink tee-shirts and pink ball caps and planning their first pink march to fight breast cancer. God bless them every one; I wish I could feel any of that.

Me ??

I'm grieving off and on. When I'm not grieving, I'm angry as hell and always, always in pain. My first thought upon waking is of pain. My last thought before sleep comes ( in those few hours at a time that it does) is pain.

The grieving is suffocating. I miss my life. I want my life back; my bucolic farm days loaded with lists of projects and chores I loved the completion of; that magical moment when I could cross the finished projects off my list at the end of the day. I loved that feeling, that special satisfaction. I often kept my lists after they were all crossed off, just to re-live that delicious moment of feeling fulfilled & proud of myself.

My reality now is, I cannot raise my arms to brush my hair all the way through. God knows I've tried; bullheaded and stubborn, hell-bent on doing SOMETHING that resembles independence, I attempt to push the envelope and raise my arms upwards. Too-taut skin and the immediate scald of white-hot pain makes me drop that damned hairbrush every time. It's impossible to accept these limits. I resent it. I must wear zip-up garments because that's the only thing I can manage to get off & on by myself.

I know I'm supposed to be saying happy-happy Polly Positive stuff now, but I honest-to-God don't have it in me.

I'm 67. I had four procedures in a row since Feb 2nd, starting with a hellish biopsy I'm still having nightmares about (sorry, but it's the grim truth), right up to the day before the "big" surgery, having the radioisotopes injected into my breast. It felt like each time I had a procedure and began to feel better, it was time for another one. I feel worn down to a raw nub.

It's all so bizarre. I often said, back in my pre-cancer days, that I hated my large 38DD breasts, that I wished I could have a reduction. Then 3/4 of my breasts were amputated after my tumor bed was removed, reducing the overall mass so post-surgical treatment would be more efficacious and a recurrence would be easier to detect.

I catch myself precipitously at the edge of screaming and sobbing when I do my dressing changes and see the grotesque pinching skin-vest I now have; the Mary Shelley traverse of merrowed stitches that travel from one armpit up and around my chest over to the other armpit, and a small distance up my sternum. The bruising, the redness, the black incision lines. It is absolutely monstrous. I look like a monster. Trust me, I'm not exaggerating.

And I am grieving my breasts...the breasts I complained about so often; the breasts I wished were smaller so I could wear pretty little things without the notorious 'tit-gap' of buttoned shirts etc, stylish garments; the breasts I called "bovine", with self-loathing rich in my voice as I said it. I used to hate my own image in the mirror because of my large breasts.

I am heartsick and baffled by this strange grief.

I spoke with another woman online, a Fellow Traveler breast cancer patient. (The medical community wants you to say "survivor", not "patient", but I'm just not there in my head yet. It's not at all clear to me what I've survived, aside from this surgery.)

When I explained the surprise of feeling grief for my breasts to my new Cancer Buddy, she said :

"It's because we are altered."

The shock of that truth, that she articulated exactly what I was feeling but could not name, made hot tears spring and flow.

I am altered.

Not like, "I just-had-a-baby" altered or "Oh look, I got a tummy-tuck!" altered or "Hey, I lost 30 pounds!" altered...

No. Each of those situations has a measure of joy in them. There is no joy in this.

I hurt. I hurt so bad. Two kinds of pain: nerve pain, from nerves amputated with the adipose flesh in both breasts, and incisional pain, that misery of feeling like I'm being forced to wear a garment far too little for me that's choking me.

I don't feel like a survivor; I feel like a prisoner. Imprisoned by pain in my own body...only it doesn't look or feel like my body any longer.

Because....

I am altered.

Every day for the rest of my life, assuming I live another 15 years, I will be fearing the return of cancer. Each pain I have, I'll worry that it's cancer. Everybody thinks I'm healed/healing, in some wonderful new phase of life, healing beautifully. Nothing could be further from reality. I don't tell anyone what I really feel. They're so happy to hear me "sounding better" etc; they're so happy they don't have to fear for me. There's no malice in that, it's just human. Nobody wants to worry their loved ones with the truth of this Spanish Inqusition of a disease. I grit my teeth when I hear "You got this!!!" and "Wow, you're doing so great!". It's like they think the surgery is the end of it all and once I'm recovered from surgery, I'm all good again. The honorable thing, I suspect, is to allow them to believe that, to have that measure of comfort I can never have again.

I must see the medical oncologist soon. I've been putting it off because I don't think I can bear one more Doctor's office. I don't want to take an AI, or ANY drug for that matter, for the next five years of my life. I dread it. I don't feel like "me" any more. I fear some days 'that me' is gone forever. I don't feel the protocols of this treatment regimen allow for the time we need to recover sufficiently from one ordeal before we are expected to submit our wracked bodies to the next one.

I realize my post won't be pleasant for some and I apologize to you for that. I have nowhere I may say these things and no one I am free to say them to. I'm hoping you can forgive me and maybe even understand.

As tlglo17 said, I am worn out ----and I just don't see that getting better any time soon. My life is altered and I'm afraid it will never be the same again. I've made my mind up that if I get a recurrence I'm not treating it. It'd be different if I was in my 30's or 40's or even my fifties....but it's way too much for a weary soul who fought just about every step of the way to get where I am now.

I am altered.

Ladies, wishing all of us healing, physical, emotional, spiritual. Just like all of you I do not have an answer. I should. After all I am a trauma therapist (sure strategies, therapies). But I don't have that real concrete answer. I do think it is a process. I would like to tap into denial again, it worked well - "just said to myself that it was not happening to me", but I still went through treatment and did whatever I had to. Not working so well now after the surgery and reconstruction. But I do know that the brain capabilities are pretty amazing. Just not sure how to trick it yet!

Strategy example - Reframing strategy - even though it was difficult, it can help me relate better to other people who have been traumatized, especially by cancer. Something positive out negative.

And just like my clients I appreciate being heard. Thank you. And I hear you.

New here. Phoenix I feel your anguish. I am 4 weeks post op. I live on a farm. Chores are a big part of my life. I am 65. At this point, I am struggling with doing any chemo or hormone treatment as advised. I am 2B with aggressive cancer. I had a MX and lymph node dissection. Awful. I am seeing a PT which has helped a lot. I am still bound around my chest and my arm is bound. I rode my bike for the first time today. It felt good. I simply cannot think of going back to feeling awful again. My best friend died of breast cancer. She did every treatment possible. It was an awful last year. She suffered greatly. Now another good friend is equally doing all she can to stop her breast cancer, but nothing is working. I feel like my gas tank is empty as well. No happy talk from me either.

Hi hang in there it is so hard some days. I am on Tamoxifen and I count down the days til it's over. I Also just say I feel fine because unless you have been thru this journey no one can really understand. It is scary and you do have to adjust to your new normal. I finally just gave in to a pain management Dr. After 2 years. I could not deal with the joint pain any more. I have 3 more years on Tamoxifen. I also do water exercise which does really help. Good luck with your journey.