Any one else falling apart?

damazon

I think you are smart keeping the reality of your condition, both the pain and the fear, hidden from the unsick. I do that and come to these boards to let go and suffer and then evolve through the pain of others -- knowing I am not alone and facing death with the same courage as you and all women who dare to post and confront their fears.

dragonfly1

I just found this thread and thought I'd add my thoughts. I was finally starting to get past the worst of my treatment and believed I would begin to feel better but instead I'm now dealing with a frozen right shoulder, tendinitis in my right hip and pain in my left shoulder as well. I'm also incredibly fatigued. I finished chemo 5/31, finished Rads 8/8 and started Tamoxifen 9/1/11 and I'm just trying to figure out why my joints/tendons are suddenly such a mess. I'm only 42! I went to an ortho dr. who keeps saying "lots of people have these problems even when they don't go through this kind of treatment". What!?! So, it's just a coincidence? I just finished a month of PT and my shoulder suddenly froze again and became incredibly painful/inflamed. Ortho Dr. has no suggestions for why this could have happened-just says to do another month of PT. I notice the same thing that many of you have mentioned i.e. no one wants to hear me complaining anymore. I'm expected to be back to normal now and yet I can't sleep due to all of the pain and I'm exhausted. I knew nothing would ever be the same again but I didn't expect it would be like this...

Edited: Sorry, I didn't realize this was in the Stage III forum when I posted here-hope it was ok.

PlantLover

dragonfly ... I'm so sorry you ended up with frozen shoulder.  I know how very painful that is!

Hang in there!!  I didn't think my shoulder would ever get better but it has!  Try to do your exercises everyday!

Please don't worry about posting on this forum!!

nora_az

Trying so hard to stay strong on the outside. Inside I am terrified. I am taking some of the precriptions meds not when I actually need them but to just cope on a day to day basis. This diagnosis scares the crap out of me!

jennyboog

@dfly....Don't apologize for posting here, we're all dealing with the same problems.  I have the samething going on, even the simple things hurt me now.  I'm having problems with my tendons/ligaments and it's no coincidence.

@nora....I put on a smile and brave face too and I'm not on any meds, maybe I should be

SharonMH

Hi., I agree,  I think we all should be able to post on a topic that is important to us even though we might be a different stage . We can all get support from each other. We are all in this together. I do not take any meds. I find getting out and walking sure helps with alot with things.  Oh yes I also do those exercises three times a day. But if meds help I think that is also.fine.  SharonH

208sandy

Looks like we're all in the same boat but I am three years out and things are better than they were - I had to drop the AIs early in the game - they were killing me - literally I was suicidal because of the inability to get out of bed in the morning and I was not sleeping more than two hours at a time - my bp was way up, my chloresterol was off the charts high and so was my blood sugar - I was actually diagnosed as pre-diabetic - amazing as I always had low readings for everything - now I am back to normal but still have neuropathy in my feet and finger tips and have developed the most painful back spasms which I try to walk off sometimes successfully and sometimes not - because I was on adriamycin I have developed a heart problem which just showed up a month ago - understand that this drug can cause heart problems "years after treatment" - too bad no one bothered to mention that to me - too late now I guess - yes I am glad I am NED but wish the treatments weren't so damned barbaric.

BlueCowgirl

Oh, man, this is me and I haven't even started Tamoxifen yet...Got the Rx, the bottle is on my nightstand, I am afraid of it. 

My onc thinks my residual knee pain is from Taxol - I had the worst knee pains ever from Taxol - literally curled up in a ball bawling, despite major narcotics. I asked last week if it would ever get better (last Taxol was in June) and he said maybe, maybe not. Great. I effing HATE it. And lower back pain, like I got from Neulasta shots, but less severe, is still happening. 

One thing though, I worry about bone mets, and it is strangely comforting to think that this might just be something else, which is just simply chronic pain, and I can deal with it. Is that crazy or does anyone else feel that way?  For the record, I am in my 30s too and this is NOT normal for a healthy person at my age and no way is it a coincidence that it all began with my treatments!!!

Hugs to all of you sisters in the same boat...I think we have every right to complain/commiserate here, and I'm so sorry you are all going through this. Healthy people just don't seem to get that the end of my rads was not the end of my issues, but it seems awkward and inappropriate to share this kind of stuff with them...So thanks Jenny for starting this thread...As if I don't complain enough on other threads, here's another opportunity! LOL

Karina121293

I can so relate to what you all said. Much as I am happy that the active treatment is behind me and my last check up was ok, I am going through pains and aches constantly. Started Tamox a month ago, and my knees are so stiff and achy, oh God, especially walking down the steps. ( My grandma was managing better at the age of 80 and I am 43). And my back too. I still cant figure out what helps - walking, resting .. And, like BlueCowgirl, I think of mets constantly, even in my sleep, honestly!!! 

O.K. we did everything and still doing to keep us safe from the beast, but is it going to be like this for the rest of time??

One of my friends had couple of injections of  NSAID Diclofenac, not cancer related though , and her knee pain has gone for a long time now.I am starting to consider giving it a try. Has anyone an experience with it??

Wishing you all health and strength.  At least we have each other. Let's just sort it out together what we can do to feel better!!!!!!!

nora_az

I wake up with pains in my hands, especially my right hand. I can hardly close my hand when I first wake up. Also my back kills me. I am on Anastrozole. I tired a lot of the time yet can't sleep at night.

Yes, I agree we do all have each other. It's hard to stay positive all the time. I am glad I was able to get a few things out in the open here without sounding like too much of a whiner.  I'm 48. I ended Herceptin last week and got my port out on Wednesday. Was never so happy to say "goodbye" to that thing!  LOL

jennyboog

Since we're all complaining ....my hands and feet hurt, especially first thing in the morning but I have noticed it a bit better now that I take fish oil.  My lower back was hurting but the chiropractor seems to have helped with that.  But my hip & knee that's another story, I had arthitis in my knee already (car accident at 16) they say the chemo aggrevated it.  Even the skin hurts on my hip at times, if that makes sense, scares the be-jeezes out of me, of course I think it's mets...so yes, Blue I'm thankful it's only arthitis even though it hurts like %$@!.

thefuzzylemon

Well..another great thread to add to my favorites!!

I have a tailbone issue - just love it...especially with all the driving and sitting I do for work...it is from the chemotherapy and may not ever go away.

I too used medications just to get through a day - uppers in the a.m., downers in the p.m., anti anxiety and pain killers all day long.  Trying to get a handle on that now - and let me tell you how bad this is sucking!  Withdrawls are so bad.  If any of you are doing the same, you may want to consult with a medication management doctor (mine also happens to be a shrink).

Like many of you - rarely sick, never in pain, never had a "regular" doctor ... but, now that I've said that, I have to say how impressed I am with my healthcare team. 

kennylynne

OMG!!!! I am so glad that I found this thread!!! So sorry that everybody is going through this but a glad its not just me. I know what you mean when you think about having mets.... thats the first thing I thought of as well. I am so glad that we have each other to vent to.

Hugs

Reality

I agree, kennylynne- I am so sorry that others have to be on this thread, but glad that for the support. I am having dizzy spells, so I immediately worry that they are due to brain mets. I have chronic lower back pain, so automatically fear bone mets and/or ovarian cancer. I used to be the person who only went to the doctor for a one-a-year check-up. I rarely complained about any aches or pain - now they are terrifying! 

Sher 

Outfield

Injury after injury, trying to get active again after treatment.  It's disheartening.  I already had arthritis from sports injuries, and I don't know if it's worse or not, but seems like I can't put together more than a few weeks without something giving way.  

Juliebell22

Tomorrow is round 9 of abraxane for me ( had an allergy to taxol) My bones and joints hurt so bad, and last week I felt the first signs of neuropathy. I was trying to look at the light at the end of the tunnel, but am disheartened to know this could cause chronic future pain. I have tried prescription vicoden.tramodal, ibuprofin, and naproxin. The only thing that helps are the narcotics, but since chemo, ive developed an allergy to them. They make me nauseous, and create alot of anxiety! I then feel like I have to take a xanax to help with that. I worry about what all this medication is doing to me as well as the cancer treatment! My body temperature is always out of whack as well.... Im in chemopause, so i either am frozen to the bone ( which doesnt help the pain) or 1000 degrees from hot flashes. Everyone keeps telling me how strong I am....so i always put on a happy face, trying to be the" fighter". Truth is, none of us asked for this! Its not about being "strong" Its about not having a choice and going into survival mode. I cry in private every single night.... for me, for and everyone who has had to go through this hell. Non sick people really cant understand. UGHHHH!!! Feeels good to vent! Thank you ladies! 

Outfield

Juliebell, I had to take narcotics with the taxane I was given (Taxol), and the only thing that helped the neuropathy was sticking my hands and feet in water with ice floating in it.  Thank goodness it wasn't cold here then. I have been chronically cold since chemopause too.  The worst is the freezing in your own sweat after a hot flash in winter.  But I just had to say after reading your post, and you look so young, that my debilitating pain of Taxol did go away.  I really hope yours and Blue's do too.

BlueCowgirl

Thank you Outfield. The current pain absolutely does not compare to what I had during Taxol, but it still sucks...Here's hoping mine and everyone else's here continues to suck less and less til it is all but a distant memory. Sweet dreams everyone.

Reality

Taxol definitely sucks! Thank goodness mine was done 8/30. The horrific leg pains finally ended in the middle of Sept., but I still have numbness in my toes. The numbness is bad in the a.m., but gets better throughout the day - well, maybe not "better", but bearable. I am so disappointed,however, that the rads are starting to kick my butt. I will have treatment 12 today - I woke up with the same intense nauseau I have had all weekend. I know it is treatment or cancer related as it is not the same as being ill with the flu. Only people, like all of you, would know what I mean. Don't you just know the difference between a passing illness and the side effects of cancer and treatment? Many med profs do not believe we can tell the difference, but I truly believe that most of the time we can. In fact, IMHO, I believe that most of us wish the symptoms were flu instead of side effects. I will tell my rad nurse about the nausea today - but a part of me does not want to as I will get upset when she just fluffs it off.....oh well, here we go - I plan to listen to my book on tape as I make my hour journey to the hospital - my mantra for the day: "It's going to be a good day, It's going to be a good day".....

'My best to all- Sher 

jennyboog

Vent all you want Julie (and anyone else), we need a place to let down our "gameface", take off the "survivor t-shirts" and just be human....and humans get scared and cry.  I use to do it in the shower, it was my alone spot & the place I saw all my scars.  Everytime I hurt I try to remind myself I'm alive to feel it but the fear that goes with those pains can sometimes be the hardest.  I hit my year in July and will say it does get better, everyone says it and it's true.  I'll never be me again physically and mentally but I'm here.

kennylynne

I to cry in the shower........ what the hell is happening to us?????? Every time I think of where I have been and how far I have come and how much further I have to go I get so overwhelmed and scared, this sick feeling starts in my tumm, and I wonder what will happen to me and how will my family be ect ect ect...... I am tired of living and breathing cancer every day. Start rads in 2 weeks and am scared to death Glad for your support ladies. Have a very supportive family, my husband is fantastic. friends are great but they just don't understand the big C

Kay_G

Hang in there kennylynne. I just finished rads 11/11. Six weeks of every day txs sounded like a long time, but it went fast. Hope it does for you as well. I was allergic to taxol as well, but was switched to taxotere, interesting that you changed to abraxane. I can identify with what everyone is saying, I am still having neuropathy issues, having lots of joint pains, now I have a weakened heart. I feel more like 90 than 48. I think about it all constantly, but am glad to be here and hoping to stay for quite a bit longer. Thanks for the thread to vent!

kennylynne

Congrats on finishing your Rads Kay1963!!!!

theBCavenger

I just did a bad thing and read this thread before I have had surgery. Have no idea what my treatment plan is, but told it will include chemo. Having surgery sometime this week, I think...

Bless you all! I hope you are all feeling better! 

Side note * I have been planning to have recon done at time of removal... after reading what a lot of you wrote, maybe better to wait. Those that had the recon done at first surgery, were you told you weren't going to need radiation, then treatment plan changed??? 

One other question. Several of you talked about a frozen shoulder... is that what I have too look forward to after all my nodes are removed? 

OOOHHHHH MAN.... I should have waited to read all this  

Kay_G

I got LYmphedema from having my nodes removed. I am telling you this, not to scare you, but because there are things you can do to prevent it. Do not get BP or blood draws in the arm you have lymph nodes removed. Also be cautious with any kind of weight bearing activity with that arm as well (yoga, exercising, lifting). Hopefully your BS can give you info on this. Sometimes it happens despite your best efforts to prevent it, but if you follow the advice, you most likely will not have to contend with it.



I had immediate reconstruction followed by rads. The PS recommended DIEP flap reconstruction because of the rads. I just finished rads a few weeks ago and the reconstruction held up fine. Remember a lot of Hesse complications are pretty uncommon, but this thread is to gripe about them. You will be okay.

Denise2730

I had my visit with the new oncologist today. I'm still turning down chemo but he really wants me to take the Femara. It's sitting here next to me and I'm scared to death of taking it. I already have fibromyalgia and the last thing I need are additional and more severe joint pain.

And yes, I'm angry! I fully believed having a DMX was going to be the end of this crap, that I could put it behind me and make believe it never happened. I get my exchange surgery Dec. 16th but I will never look or feel the same.

thefuzzylemon

Oh my my my....I had a totally crappy day today and I loved reading "take off the survivor tshirts".  Yep, the shirt is off and I'm displaying my f-ing wounds today...

My apologies - I'm terribly emotional and trying to get my meds adjusted. 

I think I've chnaged how I look at this process - once you're in the Big C, that's when it all starts.  Maybe I'm just not far enough out of active treatment yet, but I don't see this as "easier"...but you all give me comfort and I really appreciate "our place".

nora_az

I guess I have been acting "too" strong. I am just finally done with a year of Herceptin. I had DIEP 10/13/10, A second surgery to correct an abdominal wall weakness that landed me in the hospital for 4 days in May. Taxotere and Carboplatin with Herceptin from November till March....then Herceptin only till just last week. I had my port out on Wednesday. Baked 5 pies by scratch for a Thanksgiving function and woke up early to do so. Stayed at their house till 8. Then the next day (Friday) I was to go to a friend's 40th birthday party. It was to start at 7.30 at the local pub. I knew I was in trouble because of the busy week and just having my port out. I lasted till 9.30. Now I am receiving messages from 2 of my dearest friends who have helped me through all of my treatments and surgery how I let the one friend down. I guess there is a case for acting too strong. People honestly don't realize what we been through. I suppose I was hiding it to a detriment but dang it, I am not one to let things get me down!

AnacortesGirl

Wow, Nora!  That was a heck of a week and to even last two hours at the party is amazing in my book.  I'm a year ahead of you but I've been of work for the last 4 months because the fatigue was too much.

I think it was that feeling of needing to be strong that tripped me up.  I remember, so clearly, the weekend before my dx and the work party that I was involved in (building a large deck).  So once I was through treatment I figured all I had to do was get back on the horse and I'd get healthier, stronger and feel like I did that weekend.  Instead of getting stronger I went the other way and feel like I used up all my reserves.  Part of it was my reaction to Aromasin but I think that I just didn't understand how mentally tired I was.  Even when I was off during chemo and surgery I was trying to work from home when I could.  But when things fell apart again in August I just walked away from work and didn't try to work from home.

So I'm about to go back and try again working again.  I think this time I'll have a better understanding of my limits.  Talking with a counselor sure made me appreciate how much I went through.  And I also just started a book, Full Castastrophe Living, that was recommended to me by the patient navigator.

I'm just not ready to give up on the idea of finding that person I was during that work party.

BlueCowgirl

((((Nora)))) I understand completely!!! Sorry your friends don't "get it", but I try to remind myself in situations like that, that my friends/relatives who don't understand are people I love, and I am so glad they don't know firsthand how much it sucks!

I was going like crazy up to Thanksgiving, spent a very long day with lots of family and *really* needed to sleep in the next day. I griped about it on another thread - was called lazy and moping by a visiting relative. Mind you, I just finished rads and feel like sh!t, but try not to complain about it other than on here...So I guess it seems like we are all "fine" since we don't let the "normal people" know what we really feel like.

So...since I don't really want to go the complaining to everyone route, maybe I'll just shave my head again - when I had visible chemo-hair, everyone thought I was very sick, even after chemo was done...yet I felt much better than I do now!  

And Anacortes, I hope you get that "work party feeling" back soon