Anyone else having a hard time recovering?

Oh Susan, believe me, you are NOT alone in this. I am at the point of waking up and simply bursting into tears because I 'think I sould be better' but know the minute I sit up in bed, that NO, I am not better!! I climed Mt. Everest in 1980 and done some of the most difficult athletic adventures in the world. But surgery and chemo has dropped me to the floor. I have had trouble since surgery in October-infections of surgical sites, pneumonia, candida infections, you name it; Then I had an allergic reaction to Tax in the TC chemo combo that did not show up for two days. I am four weeks out of the first chemo (doc stop all treatment because my body literally collapsed beyond being able to be treated due to the Tax) and I can get out to walk on the beach maybe twice this week. Spent all day on the beach like I usually did precancer, (I had the most beautiful day) and Friday, I awoke with terrible outbreak of shingles on my right shoulder, head, between legs, and on my lips. And I am so ill now from the shingles because that virus knocks the crap out of me. I have not had an outbreak like this in 20 years. Honestly, I have had maybe 3-4 days since October where I have sort of felt like myself. The other days have been terrible for me and very depressing. No matter what I do, I cannot seem to bounce back. I am now becoming frightened that I might never bounce back. And yes, the minute I started having problems, like the minute I had an allergic reaction to the Tax, my chemo team cut me loose, not wanting to be part of any potential error. I have had to be in the ER about 3x a week to get fluids and meds as I am so ill some days. So I am having to pull together a new ONC team in the middle of chemo. I haven't even met with my new ONC yet. My surgery was in late October and I feel like any window to treat the cancer is closing now.  I know that I am becoming extremely depressed (21 years sober, so no alcohol to blame this on) and I need to get back into therapy for my mental health. My psych meds which I have been stable on for a decade, do not seem to be working right now (post chemo) and truly I do not know what I am going to do. I have dealt with 'tiredness' in 'Adult Mono,' Epstein Barr Virus, and fibromyalgia, but this tiredness, post surgery and chemo is beyond anything I have encountered. I have enormous skills in being a retired counselor; nurse and a very athletic woman. I have gained probably 60 pounds since October surgery and I cannot help myself in trying to get back to my normal activities. i go to my normal activities and have to leave due to nausea or fatigue. I am trying! So NO, you are not alone in feeling like this. Cancer is a life altering exerpience no matter how health experts want to market it or spin it. God, I was so naive. The changes done to me are permanent and I know I am not the woman I was before cancer and that is a great loss to me. Again, you are not alone and I have no idea what the answers are. I have rebounded from some very devastating and truly life threatening diseases, but the cancer treatment (not the cancer) kicked my butt. And I am so angry at health professionals for not telling me the truth about the effects of "chemotherapy." All I got was, you get chemo on Thursday and back to work on Monday (just fine like nothing happened). Sorry, I haven't even come close to fulfilling that magnificent prophecy!! And I feel like such a faiure because 'people are tired of my being ill'. I so wish I could fix it for the both of us because I know that we are strong women and not wimps. Wish I had an answer for you. Sending lots of hugs to you, SV

Hi Susan,

I too feel I'm having a hard time recovering.  I haven't been done with treatment quite as long as you but I'm very exhausted much of the time, and people have a hard time understanding. I am terribly worried all of the time about this beast returning.  I have been fortunate that lexapro helps me and then I have to have a xanax at night to settle my mind so I can sleep.  The other thing that has helped is the support group I'm in - it meets monthly and also reading the breast cancer  boards.  I also bought a terrific book that has helped me feel like my physical and mental feelings are somewhat normal.  The book is called, After Breast Cancer; a common-sense guide to life after treatment by Hester Hill Schnipper, LICSW.  It's been hard but I go to a trainer once a week and he's helping me try to get physically stronger by doing strengthening exercises that are geared toward my upper body and he is very consious of my right mastectomy side and having me do things that won't increase my risk for lymph edema.

I hope something I wrote was helpful ((HUGS)) to both you and Still Verticle.

It takes a long, long time to recover both physically and emotionally. Really you are not that far out of the 'active treatment' phase (and really are still in it if you are doing reconstruction things). I didn't really start to feel 'pretty' normal until about two years out, so don't beat yourself up, it's going to take time. And yes, once chemo is over, and everyone else thinks you are OK, then you do feel kind of abandoned, like; "Wait a minute, I am NOT at all OK," and that is a normal feeling too that other people who haven't done through it can not understand no matter how nice they are. Here are some things that I did that helped me. First, I made myself exercise no matter how much I didn't want to, if you can keep moving you will feel better both mentally and physically (really, you will). Next, I keep a little notebook and write in all the cool things I've been able to do because I did the gross treatments; big things like seeing my son graduate from high school, little things like watching the lilacs bloom in the spring etc. Also if there is anything you've ever wanted to try; singing in a choir, taking painting lessons, learning Russian, dying your hair red-do it!!!!! Also tap into your friends in a different way; go out to lunch coffee etc. and ask how they are doing, what is going on in their lives etc. Sometimes when things aren't that great for yourself, it helps to focus on others. It also might help to do some volunteer work for a cause you believe in, again being able to focus on other things can be helpfu. And you might want to join a cancer support group in your area, so there is a place (besides here) where you can vent with people who have 'been there/done that". Best of Luck! Ruth

Hey, all of you --gads, you are all actually normal.  Just not the right kind of normal.  It's normal that you have not moved on, cause you are still in treatment.  Tamox or any other of the meds is treatment, problem is, no one knows that but US.

Just Tamox alone can do a number on some of us.  No amount of postitive thinking can overcome a physical problem--midst of recon, low iron--this really needs to be fullyl worked up, please get your pcp to begin a workup for you---meds, and the exhaustion after years of treatment takes a couple of years to make up for.

The fear part takes a couple of years---after Fully completing all active treatment, not includiing tamox, etc. 

No one wants to hear about all this.  To the world and esp. our families, chemo/rads and it's all over.  Recaon?  Oh, that's just cosmetic, look at it as getting a free boob job.  YEAH, FREEKIN RIGHT!!!  And that was from my adult daughter! 

They will never know, understand or Even Care to know or understand.  So, first, quit listening to them.  Then quit caring what they said anyway and Third, quit listening to them and reply: just fine --- anything on this side of the grass is acceptable.

One thing :  antidepressants without talk therapy is only half the treatment,IMO.  Please seek referral to a counselor---psychologist or clinical social worker, preferably with cancer treatment background.  Make sure you are comfortable with them.  Sometimes you have to shop around to find the one best for you PLUS the antidepressants.  And, my goodness, woman, you have been thru hell with all your problems----all of you have.  This is no walk in the park, like an abdominal hyst or something.  You don't get over this crap in 6 weeks and return to work.

Superwoman had a cute uniform, was paid exceedingly well and could stop bullets with her wrist bands.  I've never seen another one and who really wants to be one;  we just THINK that's what's expected of us .  Personally, I've run out of "strong".  I get no points for gritting my teeth, hurting, sacrificing, and putting myself thru hell to keep someone Else from hurting or whatever.

It's time to decide to take care of yourselves cause sure no one else is gonna do it.  Tiime for families to quit expecting us to take over all that we did before---for Their convenience.  If you are tired, get rested to do the things that Must be done.  Firstly for you and then your kids.  After that, take another look at the priority list.

Now, I'm not this militant due to breast cancer, after all I've been out a long time from treatment(however, I was at one time plus a LOT of anger).  I felt the same as you did, but I did get thru the tunnel and did well for a few years.  My latest past 15 months have been tied up with other problems, not as bad as bc, but with a lot of pain and a family wondering why I'm not "all better" just because the last surgery is over---I just have 2 others I have to get thru.  And a dh shaking his head because I say I need some equipment he thinks is overkill for  a hip replacement and I think I may need.

OK< soapbox time is over.  Girls, we gotta admit we just cannot do it all and a bag of chips and in record time.  We are actually human.  They are actually human and haven't a clue.

Goodness sakes, Crystal, I'm IIA also, (and a grade 3), if our treatments worked as they should have (and there is no reason to think that it didn't), we are CURED, and will die of something else at the age of 89. Do NOT think otherwise!!!!!!!!!!!!!!!!  For one reason; if it doesn't come back (and it shouldn't) you've worried your life away for nothing, AND even if it does come back; then you really don't have time to loose, and need to start enjoying life NOW! Dottie is also right, anti-depressants alone won't 'make' you feel good, but give you the window of opportuntity to turn things around. I don' think that it would hurt to talk to a therapist, and also start doing some of the positive things that make life more enjoyable. Good Luck! Ruth

I imagine there are very few, if any, of us whose recovery matches the picture laid out for us by the medical professionals.  For me, the most important lesson has been to TRY to love myself as well as I love everyone else.  If I can find ANY fault with the women on this site, it is that we are all extremely nice--to others.  I haven't found any selfish, arrogant people on this site.  I wonder if they get cancer?

Thank you all for the replies. Everyday seems to be different. Somedays are better. Today is not so bad. Ruth - most days I believe that I will live to be a little old lady, but then I have these times that I just don't believe it. I hope that in 20 years my husband and I can say " remember 2009, wasn't that a screwed up year?". Part of my fear is my grandmother died from breast cancer, Mets everywhere...lungs, liver, brain, and bones. Seeing my grandma go through such suffering scares the heck out of me. The other side of this story is that my grandma refused all treatment. I took all treatment, and then some. I wrote earlier that I am obsessed with everything I put in or on my body. I won't even paint my fingernails because I am sure that crap is leaching into my blood causing some sort of issue!! Anyhow, Deanna, running is my savior. When I run and turn on some good music, I feel like everything is going to be ok. I hope you all have a great day...it is our choice to make it that way!

-Crystal

-Crystal

Thanks for starting this thread Susan.  And, thanks to everyone who has offered wonderful suggestions to help get us through these tough times.

Just talking about my fears, and knowing that I am not crazy or alone has helped. Thank you Susan for starting this thread.I also wonder how this will effect my son in the future. I believe that he will be a more loving, sensitive and compassionate man. He is already so much more sensitive to sick people and people that look different. My husband went to his cousin's wedding last weekend, and the brides mother passed away a year ago from ovarian cancer. My husband told me this morning (in between sobs) that during the ceremony, all he could think of is what if it is our son getting married without his mother by his side. I guess we probably both need some counseling.

Ruth - I don't know about that nail polish... 

Take care all... thank you again! 

You aren't crazy. I can only tell you it helps so much on here. The depression comes and goes. It's so hard when people think you are looking better on the outside so they don't understand how you feel emotionally on the inside. Let me tell you it's been two steps forward, 3 steps back, then 3 steps forward 2 steps back. Depression and anxiety is exhausting on its own. I had that before I was DX with cancer so I understand the energy being drained just from that let alone the physical toll your body has taken. You are very much still healing on the inside. It takes alot of energy to repair all that stuff under the skin. Don't be to hard on yourself. I have to say this site is such a blessing. I cannot tell you how many times I have sat here reading other peoples posts while tears streamed down my face, because someone understood where I was. NO ONE else can give you that. My husband bless his heart says this may as well have been him as much as its hurt him to see all that has been done to me. He loves me and would do anything for me, but he cannot understand this.

The support group should be a good place to start. Don't you think those ladies have been where you are. It has been so eye opening to have other women open up to me. People I don't even know have shared with me. I was shopping for a bra I could wear post surgery. The lady at the store shared about her mastectomy and what helped her. She told me to come back anytime that she would be happy to talk about any of it. That has happened on numerous occasions. I think the stat is one in every five women. That is alot of people so know you are not alone, crazy or different than anyone else. Just by being on this board you are reaching out, 

{{{{{{{{GENTLE HUGS}}}}}}}}}}}}} from a sister of unlikely sorts.

Ainm, I am so glad you found this thread, hopefully you will take some comfort to know that you are among friends.  And by the way, no matter what level of bc you have -- you have had FREEKIN breast cancer!  It's a disease that we have all been brought up to fear.  No wonder you feel the way you do.  You have a lot to process, and to process it during a heavy load of treatment and trying to fit into your friends and family's expectations.  No way that is easy.

Please know that that at least one time in your life: it is actually all about YOU.  You have our permission to accept this.  and please believe it.  It's NOT about them.

If anyone offers the "vanity" phrase,  please ask them that if an arm or leg were amputated  (which is what was done to your breast--amputation) would they not expect one to seek replacement of the amputated limb?  Think about it, it is a lot of the same thing.

So much better for you to be here or at meetings than cram your brain with more and more stuff from the internet and not have anyone to discuss it with.

Your efforts to learn that you are not so different from all of us is much more beneficial than not being amoung those who truly understand what you are feeling and going thru---please forgive me if I offend you or others:

Screw what all those others who have not walked in our shoes think!!!  You are not being selfish to take care of yourself, after all, if you do not, who is going to take care of them later?  If you've flown, you've heard the air line staff say to put YOUR oxygen mask on first and then assist children or others, you will better understand the need to care for you First.  It's a very difficult lesson for giving women to learn, but is absolutely necessary for a recovery from this beast.

Hugs. 

Dotti

Ann -

The perks of breast cancer?!  Wow - that's unbelievable.  Yeah, it's a real perk to have multiple major surgeries, months of chemo, lose your hair, be on medication for years and, possibly, never feel like your old self again.  But, I do think we have to all give ourselves time.  A lot of people say they didn't really begin to feel better, or like their "old selves" for a year or even two past treatments.  I think probably because most of us felt fine, or even good or great, before all of the treatments, we weren't sick that is - we want to feel better right away, back to how it used to be - but we just have to give ourselves time.  

(Oh - and by the way, I see you had TAC - me too.  I was told many, many times it's a tough chemo regimen and in the words of my onc, "a  lot of chemo."  Not that there is a chemo that is a walk in the park, not saying that - don't mean to offend anyone, it's all hard - but you can have lasting neuropathy in hands and feet from the TAC.  I still get a tingly feeling occasionally and I finished chemo sept 30).

Kim 

Hello Ann - just a quick line on the chemo thing.  I finished on December 4th (FEC).

I didn't feel better until around about the beginning of February 2010  (I had loads of SEs, bad neuropathy, peeling feet etc etc etc).  Then out of the blue, things started getting lots better.  Now I feel like crap due to rads, but at least the neuropathy is pretty much gone, and my eyesight is getting back to normal!

Good luck with everything - 

I think what makes it so hard for me is I was prepared to have a lot of side effects from chemo and to feel like crap. Thankfully I had a relatively easy time with chemo.  But because of that I assumed it was going to be a downhill ride from here on out.  And it is --- the problem is that its a downhill ride on run away train. I know things could be worse. I am 49 years old and have only been sick 3 days of my adult life up until cancer took over.  While enjoying good health has been a blessing I have never taken for granted, it certainly doesn't prepare you for what is happening now.  I try so hard to stay positive and not complain when reality is I want to scream and rage and cry and beg.  None of which will help.  

Cancer makes you feel so helpless.  But I suppose there are none who feel as helpless as those who have to have a front row seat to the fight.  I have a wonderful husband and three grown daughters.  I know this is hard for them.  Its hard for everybody.

I just want to be able to get on with my life.  My husband tells me I just have to be patient.  I have no patience when it comes to this. I want this to be over.  I want a day when aches and pains don't remind that cancer is now a permanent part of my life.  A day when no one calls and says "How are you feeling today." (That's my mom every day)  Even though I have tried to explain, she doesn't understand that I don't want to have to analyze the situation enough daily to be able to come up with an answer to that question.

I have to believe things will get better someday.  And I am so glad I have found all of you to be able to vent to and know it falls on understanding ears.  Thank you all for the support. But I agree.  It just sucks!!

-- Ann