Why was I stronger DURING treatment than I am now?
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Hi, I'm joining your page... I've had chemo, BMX, Herceptin (still on) I just finished rads, and after weeks of see-sawing, doc finds that my blood work shows 'm mostly in menopause, except for my estradiol numbers, so I started Tamoxifen today. I feel on just teetering on the edge. Everyone seems to think, "well, active treatment is done, so move forward" I feel like garbage all the time, and already worry about recurrence. Especially when my onc says we'll redo my pet at the end of Herceptin .... I see a lot of ILC women out here, and oddly that give me comfort... as I don't see a lot of them posting...
Thanks for being out here and supporting each other... I was so strong before all of this and now I feel like everything can reduce me to a puddle.... ugh!
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Reduced to a puddle describes it perfectly!
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winter, I don't feel depressed, just so profoundly sad, hurt and lost. I am alone in a world of non cancer people and feel isolated. They just don't get it, and like you I have no special other. For me recon would help, and hopefully help with the pain. I complained to the psychologist that i should be over it by now and she said its a lot to grieve and how many years did i have my old body etc...,,,,,,well stuff the judges, survivorship is a struggle...
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I think that is what brought me back to to boards, to affirm that my feelings were not unusual. If I had a nickel for everyone who has said "You are cancer free you are a survivor- woo hoo!" and then I find another patient of mine has mets or recurrence... it is not what happens to everyone but still it is I think normal to work through it. I am not sure how long I will take but I will take as long as it takes...
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Lily55, you hit the nail on the head... I feel so sad.... sad for my "before BC self" the loss of that strong, courageous woman! I know I'm still healing, and it will be a while before I'm done with Herceptin, and now the Tamoxifen, but I guess maybe part of my sadness is that I've always been one of those, "ok, done with that moving on!" kind of people and with this, it just keeps going, and going, in one form or another... moving on isn't really moving on, it's just rearranging the now...
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I am 4 years out, in a few weeks time it will be the anniversary of what I see as my mutilation, and I am finding I am feeling more and more "beaten" and tired and on the verge of tears just lately............because I am not reconstructed and still a freak then I still feel in the middle of it, another 3 years at least of this..........and I just don´t know if I will even make it.........I dare not even think about whether recon will work or not, I have extensive fibrosis and pain from rads on the flat side so that worries me too, I know there are so many people so much worse off than me but I think it is inhumane and degrading to deny a woman reconstruction for so long. It affects my life every day............and I am as bored with feeling like this as you must be reading the same old stuff in my posts.......
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I'm beginning to wonder if I need some type of therapy. It has only been 4 months since my last surgery. (Mastectomy right side in June 2015 and second cancer in left in November). I think I'm fine but tear up or cry when talking about it- the emotions pop up suddenly at unexpected times. For example I was talking to someone about her friend who was going for a PET scan. I started to tell her about it and got emotional. My navigator just called and it made me emotional. No good reason, we were talking about bras!! How do you process the emotion that is still there? I hate crying in front of people. What has helped you?
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Marie711--OMG I am beginning to think the same thing! What I thought was normal in the beginning just seems to be getting worse. (I had my bmx May 2015, exchange surgery 9/15) The other day my husband asked me if I could call a co-workers wife who had been dx (just to offer support, answer questions, you know...) Of course I was happy to, but I am not kidding...it took me a long time to compose myself before I could even dial the number. Even when talking to her, my voice was a little shaky.
I HATE crying in front of people too. That look you get when your eyes start to water and you KNOW they're thinking, "um...is everything okay?!"
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lorikg, I know what you mean. I want to know everything about other people's cancer, but instead of helping I feel like I'm just talking about myself. Maybe I'm seeking out people who understand. I feel like bad talking about myself when other people in the family have had it worse. 2 relatives are going through chemo and radiation. I skipped those due to the mastectomy and low oncotype score. I think I was too busy to think things through, so I'm trying to process it now. Didn't help my emotional well being that my husband had a stroke 8 weeks before my diagnoses.
This ladies blog post explains some of the feelings, especially the last part of the post
http://www.invasiveducttales.com/giving-anger-its-day-in-the-sun-grrr/
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I'm trying to deal and this week is brutal... I had an Herceptin infusion on Monday and started Tamoxifen that day, too... Since Tuesday, every time I take the T, I get violently nauseous and extremely fatigued for something like 4 hours... Man, I just want treatment to be over!!!! MO says, well, you seem to run full tilt on weird side effects! Try taking the meds at night, take Zofran for the nausea, immodium for the severe diarrhea, and Ativan to help you sleep!!!! All this to combat the one drug that is supposed to help me... I think not!!! Ugh!
I sucked it up through chemo, and BMX, and rads, this is ridiculous!!!! I was feeling relatively good, except for PN every Herceptin infusion, and some cold symptoms for a few days... Now this!!!! I'm so angry about this! I hate all the drugs, all the crap from the docs!!!
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Lily55 I feel for you. Im supposed to let my BS know my decision on prophylactic mastectomy next month and Im just not ready to lose my other breast. Can I ask, are you able to get recon in the UK since I understand you are a UK citizen living abroad? I'm SO sick of all this crap we have to go through.
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So my pneumonia (diagnosed in October) has resolved. I have had 1 CT scan every month since October. I met with lung doctor on Wed. However, my right lung is folded and within is a suspicious mass. I had needle biopsies in my lung. Now I must have PET scan, and if there is light, I meet with thoracic surgeon who will remove the mass and test pathology. I have known about the mass since November. I am stressed and exhausted from the testing and waiting for results. My depression was triggered by PTSD . Lily and winter and all ladies, I agree that I am grieving for my old self. I had actually felt "good" in early October, then the pneumonia arrived! Love had hugs to all! 💜
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Optimist - no I wish I could but if I go to the UK for health care I have to stay there and lose my rights to health care here...............so its not posible, I keep hoping for a lottery win..................
Lili-Ri - so sorry pneumonia is debilitating, lets hope they get you sorted son
I really thought I would be "over" all this and moving on with life feeling more or less normal, after 4 years, but its far from that.....someone even said to me that by linking in to this fórum I am still keeping the "story" going so maybe its best to pull away................................
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Lily,
Someone told that to me too, to stay off here. I don't know maybe I should move onto a depression forum?. Do you really think you should stay away? I am not quite as long dx'd as you. I have recon, half done, but I still don't feel great at all, so be careful about thinking once that is done all will be well, in my experience it's not.
LiLi- Ri, gosh Pneumonia is horrid, I am really sad to hear you have to have more testing done, it's awful isn't it? I so hope all is ok for you and there are no mets anywhere, please update us.
I am waiting too, a colonoscopy as I had a poorly tummy with diarrhea for 5 weeks a few months ago. The GI consult said he was pretty sure it was only an infection, but because of the bc history, it needs checking. Also a dexa scan and to return for repeat bloods as my wbc count is too low and that might be the venlafaxine apparently..... so I am another anti - d, which might explain my very low mood and being on the verge of tears.
I actually could not stop crying tonight, but I am listening to Harvest, Neil Young and feel a bit better......
PTSD, that's interesting, isn't it? apparently quite a lot of women get it after a bc dx...... and previous hx of depression is supposed to make it more likely....
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I saw a really nice therapist who helped me a lot. Some of the stuff I learned was kinda reminiscent of "Everything I wanted to know I learned in kindergarten" so pardon me if I am Captain Obvious.
1. Don't compare yourself to others. Everyone is unique and has their own gifts and ways of dealing. So while you can support people who are having cancer remember to keep from getting so that is all you think about is cancer. This person who had your type got it back, that person died who had what you had.... there are so many variables and when God is ready for you it happens cancer or no cancer.
2. Figure out what makes you happy and grab ahold of that like a dog with a bone. (for me it was decorating my house AKA making things for it, and being in school so I enrolled in a doctorate program. Probably stupid in one way at age 58 but despite the stress it distracts me and makes me happy)
3. Let go of what you cannot change but change what you can. There are plenty of women that I respect greatly (and I am sure men!) who stopped their medications and if my quality of life is that much worse on medication who knows if I will last the 10 years on AI but for me the best way to deal is work around ways to make the side effects better. The neighbor "girls" and I walk every M-F for 4 miles. We started out at 1.5 miles and with my joint pain I figured I might not stay with it but amazingly the joint pain is all gone except the hands. We will see how things go. I am certainly no poster child for dealing with things but it helps to strike that balance.
4. Play with the kids that are nice but be nice to everyone you can. Even on the boards there are people who are struggling and don't necessarily seem like kindred spirits. Keep a healthy expectation that there will not always be the right thing said or understood, because we are all human. Migrate towards those who seem to get you but also call you on things. For example my daughter will say to me "Mom if you let recurrence dominate your thoughts you are letting cancer rob you of your life".
Lili-Ri I am praying for you as you go forward with this next big hump of getting a mass removed from your lung. For pete's sake you do wonder, "really?? another thing"?
Lily- I am sorry you are going through the long wait for recon. I think that whole thing is just crazy land. I remember making my decision to have both at once on a split second at the time, just two years ago on the 18th I had my surgery. I know the breast cancer community is trying to make things better and it may very well be a whole lot better than it used to be but I did not have any "navigator" so pretty much winged it with decisions. Things could still be better for all of us that is for sure.
Wintersocks, I love Harvest, one of my favorite groups. "Are we walking into the enemy's camp..." Unless you are talking about a different group lol. My kids always joke with me that my memory is certainly not the same since menopause so if I am wrong-- oops
Marie- gosh! Shouldn't there be a sign on us that says "ok I have had enough.... please go bother a terrorist, cancer" (I know I don't really wish cancer on anyone)
Loriekg- I am a nurse practitioner and when I first came back to work had someone come in with a recurrence who had my "type" and I think there is a unique balance between helping people and having it hit home. I still feel better when I help someone because I think well, at least something good came out of my experience if I helped someone. However I get what you mean about the emotion! I am sure you blessed your husband's coworker's wife.
Take care everyone, Cindy
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I have to second what Cindy said. Cancer is not easy. I read and article on the breastcancer.org about PTSD and it symptoms.
- nightmares or flashbacks about the cancer experience
- continuously focusing on the cancer experience
- extreme irritability
- feeling emotionally numb
- loss of appetite
- self-destructive behavior (alcohol or drug abuse, for example)
- being startled or frightening easily
- hallucinations
- memory problems
- concentration problems
Yes a qualify to I probably have mild PTSD but I have made the decision to move forward with life and eliminate or working around a few more of these symptoms from my daily life. Acknowledging that they are real and can be conquered works for me at this point in my life. It has also open a new door for me. I am helping two Iraqi war veterans find houses right now. Both have signification PTSD. One has a service dog. The other has begun sharing things with me. It has opened an understanding that I did not have a year ago. It is also healing for me. I do believe that God knows what he is doing. I year ago these two would have really frustrated me. Now I have more of an understanding.I feel sometimes like I have two little people, one on each shoulder, telling me what to do. One says it is time to push through the emotions and the negative thought, live life and achieve your goals While the other whispers you have cancer, your tired, you can't do it, retire and focus on the disease. It can be a battle of emotions.Some of you guys have some tough roads ahead of you as I write this. I hope despite it all you can seek out and find some joy. God is good even in the bad. Let him lead.0 -
I dont have God on my side as I don´t have a religious faith like that.
Today I did not even bother having a shower, cleaning my teeth, cooking a meal, or getting dressed, I just feel so worn out, I have done all the things you are supposed to do, counselling therapy, listened to wise people on here who have coped a lot better than me, and in some ways some things are better than before but this vice on my chest, this constant reminder of physical weight that weighs me down emtionally plus the fact I really cannot be honest with many Friends as they either ignore it when I say I feel down or they demonstrate just how much they do NOT get it and then I feel even more alone than I did before I said anything.......
Its a pity party but I am 59, on my own, no work, apart from odd jobs I do that are ad hoc and totally unreliable, not enough money to live on, one breast, hate how I feel, how I look, I still cannot look at both sides of my chest at the same time, I have perfected segmented looking I have no energy to do a one month intensive course that would help give me work (if I could afford the course that is), no confidence, I just always have this Little voice picking holes in me now, oh yes and I have no relationship either........and I have aches and pains all over...........
I feel like I am just waiting for it all to be over......what a dreadful waste of life.
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All: This thread is so helpful and so healing. I was dx'd last July/early August, am now through radiation, and getting ready to start Arimidex or Tamoxifen. I was lucky in many ways...didn't need chemo, small tumor, etc. But wow, has this felt terrible, with genetic tests (bad fam history), delays, bad experiences with practitioners, and all the normal stuff everyone goes through. I also had a wonderful hubby who died of a brain tumor 11 years ago after a long struggle with that. Even though I'm blessed to be happily remarried, this ordeal reminded me of the pain and uncertainty and loss and "slow death" of the other experience.
I am feeling basically everything that others outline here. I am sad, having crying jags, am angry, and anxious and afraid. It's so good to know that this is normal. Just feel disappointed, in a way, at how I feel/don't feel now. Want to learn to honor, respect, and process the "negative" feelings while seeing the beauty and feeling the gratitude, too. The "what now" aspect is also huge, isn't it? In a practical sense and an existential sense?
Have always been one of those super-warrior types who gets through things and in fact takes on way too much. Now, I feel shaky and small and vulnerable and needy. Maybe it's good to be in this place for a while, even if not fun. And know I am in good company! Will take good suggestions here. Thanks to all.
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Brutersmom,
I am pleased belief in God works for you, but please bear in mind that many of us are non believers.
It is important to remember when we refer to symptoms of PTSD that those who have suffered illness, trauma and loss, poor childhoods, lack of support from friends and family, all a pre bc dx, are more likely to be deeply traumatised by breast cancer. the diagnosis does not exist for many of us in a vacuum. Many have been 'pushing through' for years and simply cannot handle another trauma, that is breast cancer.
People cope or not in their own way and religion is just one of those ways, that help, lots of us however are still groping in the dark.
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Want to add one more thing (and I am thankful to Wintersocks for pointing out that if you came to BC -- or it came to you -- after a lot of other trauma, that fact is going to shape your experience of it. This is me.)
I remember going to a bereavement support group after my first husband died. Remember one friend who said, "I just want to fast forward through this. Just be on the other side." While I knew exactly what she meant, that none of us wants to feel and face such pain and loss, I also realized that I didn't want to skip that part. It was necessary. Maybe it's similar here...that while this just feels BAD, it's probably true that it has lots to teach me. And if I remain "soft and open" rather than closed and hard, it will help. As they say in 12-step programs, it's "simple but not easy."
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Enjoyeverymoment - Thank you for posting you list from ' Everything I wanted to know I learned in Kindergarten' . I'd never heard of the book but I looked it up after I read your post. Fantastic! I especially like the idea of not comparing yourself to others, and playing with the nice kids. I found that after going through cancer I really sifted through my friends, and could see clearly the people who I want to keep close to my heart. For that lesson, I am truly grateful.
And comparing yourself to others is just a waste of time. Easier said than done, for sure. But it's always nice to have the reminder to reign it in and stick to the facts of your own life rather than concerning yourself with others. There are two quotes I learned on these boards that I think about all the time. (In truth, there are proably more, but my memory is shot). One is, 'Comparison is the thief of joy', and the second is 'Just when I'm about to make ends meets, someone moves the ends'.
Marie 711 - There is no recipe for processing all the emotion inside of you. I know that's absolutely no comfort - but I think these emotions kind of take on a life of their own. And you can resist all your want, and hope not to let your guard down, but it's all part of the process that contributes to your rebuilding into your new normal. I never liked crying in public either, or in private, for that matter, but everything changed following my treatment. I think that when you of through all the really tough stuff - the diagnosis, the fear, the preparing for battle - regular emotions don't get acknowledged and they are all put in different little compartments to be dealt with later. Unfortunately 'later' happens when you least expect it. It happens when you expect to be relieved, or when you are supposed to be 'back to normal'. For me it was the worst part of the post treatment process. It was invisible, it was unpredictable, and it was lonely. I truly felt like I was falling apart - and I realize now that I was. But I also realize that it was a really important (and painful) part of my healing, that eventually led to me being rebuilt. At first I was wobbly, but after a whole lot of baby steps , and tears, and total ugly meltdowns, I felt like I could take bigger steps. So, allow yourself room to crash. And when you get discouraged, hang on to the thought that this is temporary. Healing is a non-linear process. It really sucks, but all the crying and confusion will eventually lead to you being okay.
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Janet, love this post! Thanks for reminder that meltdowns don't mean we aren't coping, and that healing is a non-linear process...and that crying and confusion will lead to being alright. These insights help me see, on this lovely spring day -- with Easter coming -- that it's alright and normal that I am NOT feeling giddy about the birds and flowers. There IS a new normal, I believe...I'm just not there yet. It' going to be a while.
Part of the problem for me is the "Really?" Early life had so much abandonment, mental illness, disturbed family members, etc. that branded fear on my heart and mind. Later, my first husband died after a long struggle with brain cancer. Then my twin had emotional problems that threatened life.
But I am fortunate: I work part-time so have some life balance; am mom to an adorable dog, the walking of whom is keeping me moving during this ordeal. And I am learning, with wonder, that what I had regarded as a "fairy tale marriage" -- finding love again after losing my first spouse -- is a real marriage.
Another thing for me is the time in life when BC hit: right as I'd reached menopause and was thinking, "I'm going to feel better now. Everything is going to get easier, physically. I'm going to coast after all THIS!" To have this happen at a time when my body was already changing, and the reality of aging setting in, has been SO hard. In past, I had always been the one being strong for others, and now am having meltdowns. Part of me is ashamed to feel so scared and needy. To not really understand what is happening or what to do, or how, and what is in my control, and what isn't.
But learning to express vulnerability and need -- and to be willing to be seen by others as vulnerable (something I always hated), is not all bad. Maybe I do not have to stay on top of...everything.
As with so many things, balance seems key. It feels tricky to live in the intention to heal from BC -- to get healthy and strong as far as I can -- while also feeling, not avoiding, the grief of the loss of my cancer-less self. Before, if I'm being honest, my "okayness" hinged on being free (I thought) of the mental, emotional, and physical illness and brokenness I saw all around. Now, I'm not above it...I'm in it!
I read somewhere that this kind of emotional development in mid-life actually helps the brain. And it is increasing my compassion for others and, even more incredibly, for my own admittedly struggling self.
Want to be willing, today, to be in the mess. Walk the dog. Worry, and smile. Obsess, and try to focus on a new book. Welcome the pest control man. Plan dinners. Feel the wound of BC while learning that I am resilient. Be angry, hopeful, sad, and glad...in good company. And allow myself a chocolate bar!
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Girl53 - There is so much beauty and insight in your post. The fact that you feel fortunate, and the fact that you are learning 'with wonder' is spectacular. Even with such a challenging past you are still discovering such good things.
A lot of what you said brought me back to exactly where I was a couple of years ago. I too was making a beeline for menopause. And I was always the strong one, (and a reluctant people pleaser). And I remember feeling uncharacteristically needy, and there was indeed shame that came along with that. However, it was only through my post treatment blues that I realized I was SUCH a people pleaser, and the go to girl for when things fell apart. So I had to learn to set boundaries, and learn to ask for what I need. And I had to learn that the world would not fall apart if I planned a dinner party, and then had to cancel at the last minute. Or if I said 'no' to taking my nephew to a movie because the amount of sensory stuff in movie theatres makes my brain rattle.
When I was first diagnosed - a friend sat me down with a glass of wine. She too had been through breast cancer and had (from the surface) handled it very well. I told her that I didn't want many people to know about my cancer as I wanted to keep it private. I also said a few other things about how I was going to control the situation. She gave me a withering glance and told me to 'Buckle the f*ck up'. She also told me that cancer is a job, and it will be the most important job I will ever have. I took that advise to heart and just got on with things. And when I fell apart, during my post treatment blues' I still tried to remember her advise by doing what I could to look after myself. Sure there were days were I would sit in my car and sob, but I would also surround my self with good people, look for shoulders to cry on, eat (mostly) right, allow myself many naps, and make time for slow walks with my basset hound. I know these things sound easy but we all know that some days its nearly impossible just to put on a pair of clean pants. But in the end, who cares if your sweater is covered in pasta sauce and your wig is on crooked? It really doesn't matter. It's all little baby steps. All trial and error.
Besides, Being vulnerable is not all that bad. Sometimes it leads to really good things. And in that vein, here is another piece of wisdom, this time from Leonard Cohen's Anthem - ' There is a crack, a crack in everything /That's how that light gets in'.
Janet
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Jerseygirl2- I had invasive mixed ductal and lobular carcinoma so I'm kinda in your boat diagnostically. So glad you joined our page!
Lily my echo and EKG showed no problems and no chemo heart damage. They think my problem is med induced so they're trying to figure that out. I'm SO sorry you're still struggling so much!!!! HUGS to you!!!!
wintersocks - that is so interesting what you said about those of us who had rough lives before cancer! I've struggled with an anxiety disorder since I was 6 and depression since I was 11 so life has always been a battle. I've been hospitalized a couple times, but I've been pretty stable since 2007. I hate admitting those things because it can sometimes freak other people out. So cancer hits, and I suddenly become this strong fighter which shocked everybody. My latest complication was tachycardia so the docs decided to alter a couple psych meds of mine. That backfired big time, so I'm still trying to stabilize being back on the meds. Thank God I didn't end up in the psych unit again. I was so strong during treatment and to be reminded now that I'm still "crazy" is SO disappointing and frankly, embarrassing. I know it's a biological illness like everything else, but it feels so much more personal. When our body is sick, we treat the body and make it well again (hopefully), but what happens when YOU are the thing that's sick?!
Bottom line is that I really do believe that those of us who've had traumatic pasts, or mental disorders, etc. will naturally have a hard time with the post treatment scenario. It makes total sense. It doesn't make it easier, but it makes sense.
My faith is what held me up during treatment, but of course there are people who aren't religious and I will never try to tell you to get faith. I didn't always have faith so I understand both sides of the equation.
Again this is my personal opinion so take it or leave it - I think that most BC patients need some kind of therapy and/or meds because our struggles are so universal! Maybe it would only be temporary, but I always feel like it never hurts to look for things that will alleviate our suffering. Except cocaine - don't do cocaine (
kidding - gotta laugh to keep from crying sometimes!)0 -
Lily55......
I don't have any magic words of wisdom.....I wish that I could say or do something that could help...but I just wanted to give you a big (((((Hugs))))) and let you know that I care.0 -
etnasgirl - I hope i didn't say something that offended you! I'm so good at sticking my foot in my mouth!
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catlady44....No, no! You didn't say anything that offended me, no worries!
I had just wrote out this whole long "woe is me" post, then felt like a crybaby and deleted it! LOL! I guess I'm just having a pity party today.0 -
I always feel the same way, like I'm whining. I would never think any of you were throwing a pity party. This is hell to go through.
If you'd like to send it to me in a PM, please do. My body is a mess, but I do have strong shoulders to cry on. I even have one that's radioactive
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Oncology appointment tomorrow (well later today as not in bed yet), dreading it as he will not accept that lobular cáncer is DIFFERENT to ductal and also will read me the riot act for stopping anti hormonals, oh how I wish for an Oncologist who wants to listen, and who respects me instead of behaves paternistically...............dreading it really as I do not feel that strong right now and am on verge of tears many many times.....
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Lily - do you have a printer, you can print out a study to inform this doctor. Or maybe you can cut and paste in an email?
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