My Story - Finishing Treatment And Feeling Isolated

Hope40 · December 2014

It is so comforting hearing these words. I felt like this was my story. I hated October and I want to scream at anyone who tells me how brave and inspirational I am! I finished treatment in January and am now at 12 week visits to my doctor. I am sad all the time and every little pain scares the hell out of me. I now look semi normal with hair that is still very short and thin, no eyebrows or eyelashes. I just finished nipple reconstruction and I look in the mirror after I shower and feel like a horror movie with all the scars and trauma. I probably look normal but I don't feel that way. I get tired of people telling me to be possitive as if it's a cure for cancer. I'm 40 and a single mom of three young boys and I'm scared. I'm strong I always have been but I feel beaten and sometimes hopeless. I can't remember what normal feels like and I miss that woman in the mirror with long hair and and eyelashes and eyebrows. I feel depressed when I try to talk about it and they say "well at least you are alive" they have no idea! Thank you for this thread! It was needed very much.

placid44 · December 2014

Hope,

I am about a year ahead of you on treatment and I can tell you that after being completely bald, then gray fuzz, then brown curls, I am back to my original straight brown hair, and it's almost ponytailable. Thought I would never get here. You will. The mental part is hard, but has improved even in the past three months

lkc · December 2014

Deareast Jillian.

I think we all get it here. That's the beauty of coming on these boards. We've all been there. As a " long timer" with a Bad *ss Tumor (so said my Breast Surgeon) with complementary Infiltration of my nodes, ducts, lobes, nipple, lymph, vascular system and Her 2 pos status I was on auto pilot survival mode. I came on these boards for venting, reassurance, information, laughs, you name it. No one in my life "gets it" like the beautiful, funny, smart ladies here. Come here often. You will get through this time.

lalabritt · February 2015

Well that was a needed read for me. Thought I was the only one who felt all these emotions. Done with treatment, did PT for cancer side effects and dealt with some minor issues to the heart caused by Herceptin, chemo or LB radiation??

Now I am finally crying.......put up a good front wore a wig every day, put my makeup on, exercised, ate really healthy and did my best to look normal. I even cooked and cleaned my own house, with a little help from my friends. Now it is an effort to get dressed comb my thin hair and leave the house. I have been told the fight is done and I need time to grieve. I am tired and exhausted with a knowledge of what depression is. LOL I was told this is normal and this too shall pass, I remember when I thought chemo, then radiation and then Herceptin would never be done. I made it through all of them so I am sure I will make it through this. Just hope it is soon

rocityroc · February 2015

Wow I feel like I just read my own story with a few differences in our breast cancer. I was diagnosed a year ago Feb 7, 2014 with mucinous carcinoma & originally told I wouldn't need any chemo or radiation. Once my report came back we found out it was Her2+ and my protocol changed to 12 week course of chemotherapy (taxol) & 25 radiation treatments along with one year of herceptin which I am still presently receiving every 3 weeks until I believe the end of May, 2015 (no one seems to know my end date). I was very up beat & positive all through the majority of my treatments & friends were very supportive. I notice as time goes on the friends are busy & although my amazing husband would never admit it I'm sure he's tired of all of it, just a feeling I get. Well, I went a week ago for my surgical check up & my surgeon did a breast exam & she found another lump. At first she thought it was just scar tissue but she quickly ran to her computer & scrolled through a bunch of reports to find that my original lumpectomy was done at 6 o'clock & this new lump is at 4 o'clock, same breast. She also looked through many reports trying to figure out what could this lump be so she came up with the conclusion that it could be damage from radiation but she is sending me on Feb 26 for a bilateral mammogram & an ultrasound of this breast. So unfortunately I have been thinking the worst & can't sleep much at this point. As you can see you are not alone. I was not as physically active as you prior to my diagnosis although I was doing half marathons along with 5 &10 k' s, all walking but this has taken the wind outta my sails for quite some time & I'm having a hard time getting back up on that saddle or bike. Hope this finds you well! Take care, you are not alone! ♥

debiann · February 2015

I'll be finishing herceptin in May. I did adjunctive chemo (TCH) so I don't really know my response. I've tried staying positive throughout this ordeal, but I hardly got off the couch during chemo, it kicked my butt. Those of you who maintained your normal routine and even exercised amaze me.

Thankfully I'm feeling much better now. I'm not loving the breast cancer awareness gifts I keep getting from family and friends. I'm sure they want that little pink ribbon to mean "I love you", but to me its just an unpleasant reminder. I truly love my new Thirty-One lunch bag, but surely there had to be an embroidered emblem that fit my personality better than the pink ribbon. And no I did NOT read the inspirational book you gave me. A locket or heart on a chain would say "you're special" much better than a bc necklace. But for the most part, I wear/use the gifts anyway and remind myself I'm lucky to be loved.

The "you're cured" cheerleaders are another challenge. They mean well too, they just don't understand. I usually respond with "I hope I'm cured, don't really know, but I feel good today."

"I feel good today" is the attitude I've adopted to keep my mind from lingering on the dark side. I can't help but visit that place from time to time, but I remind myself that I feel good today, enjoy it.

Jillian123 · February 2015

Thanks Debiann! "And no I did NOT read the inspirational book you gave me." LOL! I just read this and I spit my coffee out I was laughing so hard. Amen.

You all have been so kind with your responses and I go back and reread them for advice, inspiration, and just to remind myself I am not alone.

Herceptin finished last week. Just in time for me to discover a palpable mass in my armpit. Ultrasound shows an enlarged lymph node that we are presently monitoring and may possibly biopsy next month. So that's awesome, because God forbid I actually get a break from any of this.

I understand why women do not opt for follow up testing. I understand why women stop taking their tamoxifen. I understand why women stop doing self exams and refuse continued chemotherapy. At the beginning I was aghast when I would read or hear that people were not maintaining their treatment protocol or were opting out of follow up imaging/testing. I'm not saying that I want to go this route myself (yet), but I get it now. I totally get it.

Jillian123 · February 2015

Rocityoc - Wishing you well at your February 26 appointment! Doesn't feeling that lump just make your stomach drop? I thought I was going to faint and vomit all at the same time. I am thinking of you.

bobogirl · February 2015

We are all with you Jillian, and we are 'in the bag' for you as you go to any appointments! You are not alone. After SIX surgeries last year (a result of two life-threatening infections, blah blah blah), I am now wiped when I am supposed to be ready for action. I have small children like you do. I took them to appts like you did. I acted totally normal, and even cheerful, in the face of extreme... not-knowing-what-was-going-to-happen. And now I am struggling to get myself back into a routine, to get my energy up. If I have a choice, I prefer to stay home, doing what feels like hiding out.

You did not create a 'positivity monster' -- it is not your fault. It's possible people would have expected you to 'get on with it' no matter how you acted. You deserve to feel your feelings and have them validated. However you need to do that, do it, and we will be with you.

You have been given some excellent advice from our sisters on your thread here -- Special K's is just fantastic, I will join you in eating chocolate mindfully -- and we want you to know it's okay to not feel like you are 'cured.' I am not 'cured' either, even though the people in my life have chosen to see it that way.

You are a rock star! We will not 'brush you off.' Sending you hugs.

Anonymous · February 2015

Oh Jillian, I'm sorry you found a lump. I have a chest wall lump that had to be biopsied recently. It was totally B9. But I know the feeling of despair. After I had the ultrasound and the tech left to talk to the radiologist, I looked at the computer and it was full of bad words. For a brief moment, I considered trying to hunt down a sharp object and hurting myself. I was THAT freaked out. But in the end it was fine.

formydaughter · February 2015

I'm in bed a lot too. I feel like this f--ing disease has made me bipolar. I swing between being really depressed, aches and pains, not wanting to get out of bed or do anything, to having a good day where I either make it to yoga or get productive with a chore or work task, but this makes me so tired that I'm back in bed again. My MO reiterated today that I'm likely cured. I don't feel like it. I'm also scared as treatment is winding down. A bit of a white coat syndrome - feels better to be seen, don't leave me, kind of thing.

My chemo brain is fuzzy, making work near impossible. I don't know what to do about that. And I feel trapped with knowing that I should want to be better and be there for my daughter, but usually the stress of childcare and financially is just too much. I feel shameful to even say that sometimes I wonder what I'm going this all for - feeling I have little to look forward to. I know this is selfish and something that I need to snap out of, but I'm having trouble doing so. I've never had a mate and been truly loved in that regard or had that companionship. I used to yearn for it. Now I'm realizing it is not likely that I ever will have that in my life. It makes me sad, but at the same time, I can't imagine being romantically interested or interested in much of anything

Jillian123 · February 2015

Badatusernames - I'm so glad your mass was benign! I need to keep remembering that it is probably nothing but once you've gotten "the news" once it doesn't seem a stretch to think of the worst.

Formydaughter - My heart breaks for you. All I can say is that I KNOW exactly how you feel. I do. I'm having less bad days and more good days now. I hope that happens for you as well. Sometimes I am overwhelmed with despair and feel as though I don't remember why I'm fighting. I try to think of my husband and my parents and children and friends - I know they love me and need me here even if i am sad and tired and feelings hopeless

formydaughter · February 2015

Thank you Jillian. Your support helps.

aab0716 · February 2015

Jillian123-just read this because I was scrolling through posts to see if anyone felt as depressed as I have felt lately...I had a double mastectomy and radiation last year and breezed through it all. But then I went to a neurologist for a different problem and he told me I had mulitple myeloma. Of course, I freaked, called my oncologist who did a bone marrow test that thankfully came back negative. However, I was shaken to my core and am not sure any test results are accurate anymore... I started on Arimidex and had to go off it because of joint pain and am currently taking tamoxifen. Both these drugs make me depressed and I just feel like there is no point in anything. I, too, hate it when people congratulate me on beating cancer. I have not beaten cancer, and I hate the month of October now! I want my old life back where I felt I could handle/conquer anything....but I know that I won't ever be that way again. I'm tired of talking to people about my feelings so I don't express them anymore (besides, they are so negative no one wants to hear them). It's a relief to know that I'm not the only one who feels this way. Thanks so much for letting me express myself and knowing I'm not the only one out there who is not positive, and 'grateful' for my cancer diagnosis and feels like life sucks sometimes.... I plan on asking for antidepressants the next time I meet with my onco. I'm sure they will help. But so does this...I feel better now

Hailey · February 2015

Jillian
You achieved the goal of finishing your treatment, holding strong, and then the shock of finding out that it was not giving you a complete clean finish is hard to accept - you did all you were told to do, brutal as the medeval treatments are. We all know at any time it can come back...or not. I find digging into the current research and learning of new trials, in final stages of new treatments that should be out in two years helps me focus, on new, less invasive as well as removing the cancer, encouraging and hopeful. Hope --that these will be available soon for all of us - we do have a better chance with these new treatments then ever before, but it is at times very difficult to shake off the melancholy feelings of helplessness. Good friends, good exercise, food, and activity Will help, along with talking about it. It is simply Adjusting and Adapting with some Acceptance.

I know that once I finish my Herceptin in August then the dread of being rechecked, waiting for the other shoe to drop will always be there until some better treatment emerges. I too, cannot do the October Cancer Walks - you are not alone in that one. Once you have cancer you live with that forever and adjust and adapt. We all have had these feelings.

Keep moving

bobogirl · February 2015

Hi Jillian, I am thinking of you and waiting for good news from that possible biopsy. You have started such a good thread. Obviously our sisters need it, myself included.

Formydaughter, I could have written that post of yours myself.

I'm in bed a lot too. I feel like this f--ing disease has made me bipolar. I swing between being really depressed, aches and pains, not wanting to get out of bed or do anything, to having a good day where I either make it to yoga or get productive with a chore or work task, but this makes me so tired that I'm back in bed again.

I can get out to yoga and be super-productive, or I can -- when I have the choice to work from home -- not get out of my 'yoga clothes.' Not sure if I should be resting when I feel like it or pushing myself.

I wish we could be having coffee together right now! We could figure out the day together. Sending you hugs.

formydaughter · February 2015

Bobogirl - coffee sounds wonderful!

I've been in a pretty big funk. Hadn't left the house in a week. Herceptin was harder than normal. Not sure why. And then depression kept me home. BUT today I left the house. Drove my daughter to school this morning. It was s big step, sad as that is.

Jillian and Rocity - thinking of you and hoping for good results.

AAB - I feel exactly the same way. I'm glad you posted.

bobogirl · February 2015

Formydaughter: F Herceptin!

{{{AAB}}}

Tinkerbells · March 2015

I have been having a hard time these past 2 weeks. On the surface, all is good, but mentally I am a wreck. I am eating garbage as a coping mechanism, which makes the despair worse. I have back pain which has lasted beyond the wonderful 2 week mark. And while mentally- of course it's back pain brought on by all the exercising Ive been doing - you know where the mind wanders.

Here's the problem- I don't actually believe that this won't come back for me. I believe that the cells escaped beyind the node, and doubt the chemo mopped them up. And while I do go ahead with living, being active, putting a smile on for my family and friends. I'm just waiting for the other shoe to drop. AND I expect it to drop sooner rather than later.

And I hate that for the rest of my life, I will fear every ache and pain irrationally

I hate this disease, hate that I could live such a healthy life and get it anyway, and don't trust that science will find better treatments any time soon.

I'm sorry to be such a downer today. I'm just having trouble believing when my sisters are dying from it all around me. They sure as hell deserve better

formydaughter · March 2015

tinkerbells. I am sorry you are having a hard time. Fear is no fun and can be debilitating, I truly hope time heals and you will be disease free and able to not worry or even think about it at some point. I understand what it is like to put on a happy face for others while suffering inside. It takes a lot of energy, in addition to just plain hurting. I am sorry that you are there and send you hugs. I'm glad that you can vent here in this safe place where others can hopefully understand your feelings

ahdjdbcjdjdbkf · March 2015

I get every single thing you said. I rode my spin bike for 2 hours at a pop while on the red dragon, went to work with perfect clothes and a matching head scarf, did 5 mile runs with one boob, and went to my dad's funeral with a half inch of hair I colored blonde just to name a few out of 100 other heroic acts. Still I am scared shitless of recurrence!!! Today is 3 years since my d-day and I went to work and went to the gym. Going..

Deblc · March 2015

I finished all my treatment last week and took out my port today. Everyone around me says the same thing, "Great, now you can move on and put this all behind you". They don't understand that the fear of recurrence is with you always and you can't "go back" to normal, or the person you were before. Or just pick up your life like the past year is just a blip and it's all over. I still agonize over how to move forward and how much testing I should be doing. My MO had asked me to keep the port in for two years "just in case". So I worry if I did the wrong thing by taking the port out. It's constant second guessing, and people get impatient that you can't "move on"

bride · March 2015

Jillian,

You beautifully said what I've been feeling. I did neoadjuvant chemo, a MX, and 30 rads. Went through hell with the side effects. Aside from the month I lost to chemo fog, I was a trooper. My caregiver and I were the "life of the party," or so we were told. Yes, I was having rads during Halloween so, yes, I did show up in a homemade costume as a radiation machine with me inside. And yes, it did have lights and all that. When I wasn't being the court jester, I was learning about my cancer, helping others with various issues, and, in general, doing pretty well. I've been on Anastrozole for three months and have three Herceptins left.

I should be very happy, I'm NED, and am recovering from the SEs well. I'm not happy. I'm depressed, have no energy, and, this is really scary, I'm not interested in much. This thread has been a godsend, at least I dont feel alone. But I want to feel better and I can't figure out what to do. And I hate feeling and sounding so freaking pathetic.

bride

Agent99 · March 2015

I haven't posted in a long time, although I read almost daily. Jillian, I finished chemo nov 2014 and radiation dec 2014for triple positive BC. I was sick as a dog but I kept up with almost everything, family, business and like you I tried really hard to let everyone else feel great about me. Now I am still having herceptin and starting this aramidex and I am just a shell. I feel as though I died when I wasn't looking. I hurt, my mind is gone, I'm depressed, scared, I look like hell and no one gets it. I'm mad, and I don't know how to get it together. I am overwhelmed by everything and before bc I was the "most capable woman on the planet" I could make the impossible happen before breakfast, kick ass by lunch and have supper on the table with pearls and heels. Now I drive around town aimlessly in circles for hours just because my heated car seat is one of the only places I get relief. When I let my dog "sunny" out to pee this morning I called her "willie", "willie" died 30 years ago .... My mind is crap. I know I should be feeling good or better but I dont . Please don't take this wrong but I just need to say it out loud(no need to send help). I never understood suicide but I totally empathize now because these have been some very dark days for me.

So for whatever it's worth, I get it, I'm with you and I believe with complete faith (which is all I have left) that with time we will get through this and be better than before!

Now, I'm heading to ULTA! HA!

Jillian123 · March 2015

Love all of you ladies. Thank you for giving me a safe place to talk and thank you for sharing and expressing your struggles.

I decided to put off the next ultrasound/possible biopsy until April because, honestly, I just don't want to know.

Tinkerbells, you wrote: "Here's the problem- I don't actually believe that this won't come back for me. I believe that the cells escaped beyind the node, and doubt the chemo mopped them up. And while I do go ahead with living, being active, putting a smile on for my family and friends. I'm just waiting for the other shoe to drop. AND I expect it to drop sooner rather than later." Exactamundo.

Rocity - sending you good juju.

Tinkerbells · March 2015

I hear you. And I have 4 Herceptins left AND also had axillary lump- they say it's scar tissue, no need to biopsy. Thanks. I'm pulling for you, Jillian. Please keep coming back to post. And for reference, if I hear onemore person tell me how brave I am or that I'm a warrior, I'm going to get stabby

Jillian123 · June 2015

I am just checking back in to make sure everyone on this thread is keeping her head above water!

2015 has been an odd year so far. I had three scans at the beginning of the year - the most frightening being the brain MRI - and they have returned with no evidence of disease. I received about one day's worth of solace from those results and then I was right back on the worry train. I made the decision at the end of the kids' school year to just stop thinking of cancer. Stop talking about it. Stop letting it define me in any way. I don't talk to anyone about it (except you awesome ladies here on the board). It has been a game changer for me. Despite the fact that I've started calling my tamoxifen pills the "devil's teeth" and I have an internal debate almost daily about whether I am going to keep taking them, I really don't think about "having cancer" that much. As my strength has returned, I have been able to participate in more and more book clubs, lunch groups, school events, academic endeavors. I've been able to read more, travel more, watch more movies. I've been able to lose myself in life and not hyper focus on an illness that I have decided is controlled to the best of my abilities. I am choosing to focus outwards and not inwards.

I'm not trying to be Pollyanna about any of this. I experience severe pain from radiation, fatigue, nausea, sleeplessness, mood swings, hot flashes, etc. etc. Yes. All of that. It's no joke, I understand. But I look past that suffering for separate meaning in my life now. When I find myself worrying or feeling sorry for myself, I try to just immediately start thinking of something or someone else. This sounds counter-intuitive when all you keep hearing is "focus on yourself" I know, but I've come to learn that you care for yourself most profoundly and successfully when you GIVE of yourself. Play with your kids for five minutes or call your mom or volunteer for a project at work. The women I've met who are thriving aren't the ones denying their suffering, they are the women who have found purpose in their suffering.

If any of you have an interest in psychology and/or philosophy, I would HIGHLY recommend Viktor Frankl's "Man's Search for Meaning." It is life changing. It has given me a new compassion for the suffering of others and an understanding of the meaning of my own. I also recommend the documentary Pink Ribbon Inc. if you have not seen it - I have joined Breast Cancer Action and I feel like I have a voice in the sea of pink now. Again, life changing.

I want to be clear, I am not writing this to "brag" or tell you I have any answers. I don't. In fact, I may, hypothetically, sometimes, drink a half a bottle of wine and pass out sobbing about how I am afraid to die. Hypothetically. But I have more good days than bad lately. I am grateful for time. What I want to do now is just share with you all how my life and thoughts are changing as the months and years pass. My hope is that someone can relate to where I am at this moment, or maybe something I have done might help someone else.

Sending love to all of you!

Jillian

Buddy123 · November 2015

Hi I'm New to this and I'm not sure if I'm posting to the right forum. I am so thrilled to have found this thread even though there hasn't been a post since June. I now feel i have found my soul sisters. I am 3 years out and can do relate to a lot of feelings expressed above. 3 years later, and I 'should' be doing cartwheels, should be celebrating every breath I take etc etc. but I can't.😯 I 'flew' through chemo, full masectomy, radiotherapy (not easy) kept the show in the road keeping everything 'normal' for my four children, elderly parents, siblings etc for a YEAR. Had to return to work for financial survival to keep roof over our heads, food on the table. Spent last two years 'pretending' i can do this. Being super productive at work falling in a heap when i got home. my poor children and hubbie. No paid sick leave left. Annual leave used up with gall bladder op hospital appointments etc. two weeks ago left work crying feeling I can't do this anymore. I can't go back. my body and mind are exhausted. I want to sleep sleep sleep. stay at home. yes people don't and can't understand. sure you look great. your hsir has grown back etc etc sure your 'cured'. I have given up explaining fatigue and how tough I find tamoxifen. that a whole other thread. I am feeling so down and exhausted. I love this forum where you can be honest. i'm not giving up. I think I earned the right to take time out. I wish money wasn't important. My four beautiful children are the most important people in my life. I need to quit work to be able to live a life and be a mother to them not zombie. I would love to know if many women post bc changed jobs, or worked from home to be able to live a quality life with SEa and long term effects of treatment.

My Story - Finishing Treatment And Feeling Isolated

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