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Can someone please help me?

mj_weis
Posts: 45
Joined: Sep 2013

I haven't posted much, but have been on every day for advice and support.  I had stage 2a with lymph node involvement, had chemo and radiation.  Had a terrible reaction to the chemo and they had to stop my treatment after 3 treatments instead of 4.  I had acute total body pain.  Now onTamoxifen and the pain has gotten better with Lyrica and PT.  Not gone, but I feel that's just something I will have to live with.

My question is when do we fell normal again?  I just had my one year mammo (all clear, yeah), and still feel pretty bad.

I guess I must mention that my Mom, who is my very best friend, is terminally ill and is in a nursing home under hospice care.  I spend ever other day with her, and it is a big stresser, but I've been under stress before and not felt this bad.

 

Can someone please help me?

 

MJ

 

GlowMore's picture
GlowMore
Posts: 363
Joined: Feb 2008

Hi mj................ I remember that total body pain alright............I think I took 2 of the 600 mg gel cap Tylenol high strength every 6 hours for at least a year.  My Oncologist said I was really blessed with perfect kidneys.  Didn't stop my chemo however unless my blood counts got too low.   I practised something I had read about years and years ago with pain....where you imagine that you take the pain and imagine that you place it into a triangle ...you close your eyes and imagine that you place it in that triangle ...for me it was a triangle I could see when my eyes were closed and I had it sort of up at the right top of my brain.  I know this sounds totally nutty..........but it did help me.  I just talked to that pain and told it I was not going to put up with it any longer and I was just going to put it in a triangular prison.    I'm sure that there are technical names for doing this....but I had read this in a story about what some of our soldiers did in Viet Nam...and anyway....it helped me.    Stress is a killer so another thing I have been able to do is to Let Go and turn things over to God.  We are only human and we can only take so much...you have the added worry of your Mom but she is in good hands and we are all going to die one day...we just don't know the time or the place....so it is best for us to let it go since all we can do now is live this day that we have been given ...NOW.    When you are tired REST   Take care of YOU first .... I was not able to use the Pain Meds because they just put me to sleep.  I am blessed in as much as my body reacts to meds strongly...so therefore the chemo did a good job (almost killed me but did not)  :)   We know what you are going thru.... hang in there.   Glo

RozHopkins
Posts: 477
Joined: Dec 2010

You know the stress thing gets us all in different ways and added other life problems that happen to us all increases our recovery time and how we react to things big and small.  Depression can hit also.  Some move on quickly some are never the same.  Depends on med side effects and your past treatment.  I battled aches, stiffness and joint pain with Pilates and Yoga.  It really works but be patient while your strength builds up SLOWLY.  I tire very quickly.  I stiffen easily.  Arthritis came on and jaw bone disease due to chemo probably.  Memory is terrible but wasn't great before either.  But this is YOUR time to get better and it can take years.  Try a few things.  Antidepressants, though some dread the thought of them, can help day to day until your feel perhaps you can reduce dose and see how things go.  Many of these are not now addictive.  It could help keep you on an even meal to care for your mum.  

 

I personnally think chemo and after meds make existing conditions worsen.  For me for sure.

 

Good luck and know this is very, very normal.  Just have to try and sort out each problem at a time.

 

 

mj_weis
Posts: 45
Joined: Sep 2013

I am bipolar and have been on anitdepressants for years.  I just didn't want to get the sigma of being bipolar as I think I have it pretty much under control.  The depression is another thing.  I worry all the time.....I worry about the cancer coming back, a lot.  I feel destined that it will, not in my breast  but somewhere else.  I spend 4 months with my sister who had ovarian cancer that was in remission for 10 years, and then just a tiny spot showed up on her lung.  Needless to say my 4 months were spent watching her die.   I was so glad that I could be with her, it was such an honor to me. 

I guess, now I am in sort of the same situation with my Mom, sitting and caring for her for the last months (Years) of her life.  Putting my life on hold until her life is finished....... I guess I need help, more than you all can give.

 

MJ

Pixie Dust's picture
Pixie Dust
Posts: 289
Joined: Jan 2014

MJ, sounds as if we are in the same shoes. I also have depression and anxiety about my cancer returning also, even that it was caught early and now am cancer free. I have a high recurrance rate. I am sorry to hear about your sister and your mother. My mom passed away with BC in 1996 and I lived in another state and then I quit my job to be with her in her last 3 months she had to live. Never ever would I wish among anyone with what I went through watching her die and knowing that she wanted to live. Since then I have been taking medication for depression and anxiety. And now it is even worse because their is never a minute that goes by that I do not think about by BC it seems. I will be starting Arimidex as soon as it comes in the mail for 5 years. Hope this will keep my cancer from coming back. I know one thing, I am going to have to change my attitude about thinking negative all the time and thinking positive things in my life. This is what you need to do too. What was your BC DX?

CypressCynthia's picture
CypressCynthia
Posts: 4017
Joined: Oct 2009

I believe that there is a new normal - maybe not exactly as before, but, with time, you will gradually begin to feel better. 

The stress of being a caregiver of a terminally ill loved one can not be overstated.  You may not even realize the stress that you are under until your mom dies.  This happened to me when my dad died.  I lost about 30-40 lbs and everyone was worried that I was too thin (only time in my life...lol).  I had no idea that this was from stress until my dad died.  Suddenly, it was as if a huge weight lifted - which sounds awful because I would have done anthing for him to have stayed with me in his healthy days.  But, at the end, he was not healthy and not himself, and I felt so impotent and wanted so badly to make him better.  When he died, I could finally grieve and put that worry aside.  Does that make sense?  My sister, who is a psychiatrist, had a fancy name for that kind of stress, but I can't remember it. But it is real and you may not realize it now, but you will understand it better later.

The type of pain that you had was probably related to a massive inflammatory reaction and will most likely slowly improve.  I would give it at least a year and look for small signs of improvement.

You have so much on your plate right now and I wish I could take some of that pain away!!!  Gentle hugs and prayers and please keep in touch and let us know how you are doing.

disneyfan2008
Posts: 5504
Joined: Oct 2010

so so sorry to hear of you and your mom. I know it sounds like trivial thought but a journal helped me , IN HIND sight. I thought it was goofy/ silly but afterwards I realized vent in writing helped me a lot.

 

HUGS

Denise

disneyfan2008
Posts: 5504
Joined: Oct 2010

yipppe for clear Mammo..doing the happy dance for you..

Denise

mj_weis
Posts: 45
Joined: Sep 2013

Betty, my BC diagnosis is Stage 2a IDC 2 nodes positive 2 nodes removed.  HER2 Neg.

Cindy, I have followed your story from the very start and you are one of my heros!  For what you have gone through I should be ashamed to complain.

I had a wonderful visit with my Mom today, she was very lucid and we had the best talk we have had in months.  I cherish this time.....I know I spend a lot of time with her, probably 4-5 hours every other day, my brother thinks I'm just making things worse for myself.  Sometimes when she's having a bad day I think that is true.  Who really knows.

I'm having one of those really bad body ache days.  I just wish this part of the cancer would just go away, I don't have time for it. Ha Ha.

 

Thank you all for helping me through this, I really don't have any friends to vent to and hate to dump on my kids.

 

And Denise.....Yes, Yipppeee clear Mammo that almost got lost in all the other stuff.  How lucky I am.

 

MJ

 

 

 

 

GlowMore's picture
GlowMore
Posts: 363
Joined: Feb 2008

Love your last post of "How lucky I am"............. that is a great attitude.    My BC Diagnosis of 3-A had 19 nodes with 6 that had cancer..........but that was TWELVE YEARS AGO**  I am HER2Neg also....  I am High Risk Triple Negative IDBC Stage 3a ........and I am still here.      I was with my little sister 4 years ago as she died from Pancreatic Cancer...inoperative kind.   She was 7 years younger than me and it was not right for her to die first.     You are blessed to have this time with your Mother............it is painful but you are there for her and that is a good thing.   Sending you good thoughts and prayers.  Glo

RosaC1201's picture
RosaC1201
Posts: 8
Joined: Jun 2004

I can feel your pain MJ, I was diagnosed in Feb w/IDC triple negative. This is my first time with Chemo even though this is my 3rd round with cancer. I had thyroid ca in 1986, then uterine ca in 2001. I had a lumpectomy this march and 1 lymph node removed. all was clear. I am having bone pain from the injections I am getting for my White blood cells,, after the 1st round of chemo my WBC was at like 1. and the pain was excruciating at times. I even went to my Dr and said no more, I am done. of course I was talked out of it. back in 1986 when I was diagnosed with thyroid ca, my dad was dying from skin cancer, so I understand what you are going through. It's hard to watch them dying and still have to deal with your pain. I sometimes feel like giving up, going through something else which doesn't help me at all. I also just had blood work done for the genetic testing and having to wait for those results is scary. I worry about my girls and my grandchildren too. all we can do is pray and hang in there and take it 1 day at a time. I try, although sometimes its not easy, I will pray for you and your mom

mj_weis
Posts: 45
Joined: Sep 2013

You are so very kind.  I am pretty much over my cancer s/e except for the body pain which comes and goes.  I have a lot of anxiety, but I atribute that to my situation, not my cancer.

Right now I am battling with myself because since my cancer, I have had an inner urge to go see my kids (2 are out of town) which include  5 of my grandkids.  They are growing so fast and I just want to be a part of their life.  With Mom in her condition, it makes it impossible to do this and leads to a lot of stress.

The hospice Social Worker says she is worried about me becasue I am spending too much time with my Mom (how can you do that?).  I spend about 4-5 hours every other day with her, most of the time she is  sleeping, but she knows I'm there, so.....

I am rambling on, sorry.

 

Thanks for all the concern and prayers, at this point I really need them.

 

MJ

 

24242
Posts: 1417
Joined: Mar 2001

Well I can tell you after 18 going on 19 years I cannot help think of risks.  I took a different approach to living and that was quit worrying about the things I had no control over.  I was stage 3 with 11 out 21 positive nodes and triple negative IDC at 36 and had less than a 40% survival rate back then.  I was one of the youngest at that time but within the year of being treated they came in at 20 years of age.  For those who spend their life worrying about anything let alone the reoccurance rob themselves of a better life.  Stress comes in all forms and seems to be the worst for us.

I have had years of pain and suffering and somedays much worse than others.  The only thing that I have actually found most affective is movement and I turned to working hard if i hadn't done that throughout my life already.  Movement is the thing that helps the most physically and mentally.  I have been an athlete my whole life and actually watched what I ate and now mud and tape drywall when the medical community mostly thought I would never be able to take working full time again with all the problems I had.

There probably is nothing normal about me and never has been.  My parents were right to teach me that life is hard and stressful and that one has to just keep pushing through.  I found trying to convince people I had problems was more stressful than anything so finally stopped and just got on with this thing called living.  Trying not to dwell on aches and pains I find one of the biggest challanges there is and learning to live with all these diseases after only having one.  But I can assure you that life gets a whole lot better and after all these years I feel quite human again.

Statistics are only there to be broken and worrying about things we have no control over is something we need to get perspective on.  After learning the results of the study I was in makes me realize how just lucky I am...

Being good to ourselves is the best we can do

Tara

mj_weis
Posts: 45
Joined: Sep 2013

Just to let everyone know that Mom passed away yesterday June 27, 2014.  I am more than devestated.  At this time I seem to be walking around in a fog, not believing that she is gone.  Her 95th birthday would have been July 5th.....  She suffered some and of course I was really mad at God, but I guess all thing come in his time and we have to accept that.  I will be going home with my son directly after the funeral, so I won't be alone the first week, after that, I'm not sure what I'm going to do with myself as I spent most of my time with my Mom.  I guess it will all work out.

Again, thank all of you for your support.

 

MJ

 

 

emilyw85's picture
emilyw85
Posts: 28
Joined: Jun 2014

I’m very sorry for your loss MJ, I can remember when my grandmother died which I was very close to her, my heart was broken, and I still cry about it when I remember even though it’s been a year since she passed away. May your mom rest in peace, please be easy on yourself. Hugs Emily.

Pixie Dust's picture
Pixie Dust
Posts: 289
Joined: Jan 2014

MJ, I am sorry of the passing of your mother. I know your heart is broken. You took very good care of her and also your sister. You seem to be a very good garegiver. Now it is time for you to go home and take care of yourself and remember the good times you had with your mother and sister.   Love and prayers,  Donna

camul's picture
camul
Posts: 2135
Joined: Dec 2010

I am so sorry for your loss. My mom passed from head and neck cancrr a few years after my first bout with bc. My mom was with me fir the first fewnyearsnafter suffering 2 massive strokes, then was moved to be by one of my sisters where she was til the end. It was really an honor to have been given the time with my mom and I kniw my sister feels the same. Our children were so blessed to have had the time to really get to know her. She was 2 months short of her 89th birthday. She was ready. She was an amazing strong woman, the mother of 12, yet most of the time was ablento make you feel as though she really heard everything I said. Now looking back,;she would have had to have been a saint, she could still make each of us feel special and capable. Believe me, you it wont take too mch time to find plenty to fill the time you would have been with your mom and that you spend it now taking care of you, It took me a while to accept that it was okay to take care of me. I hadbteenage boys at the time and the were great with my mom. But I always felt guilty that I wasnt spending enuogh time with Them. I waspretty good with the guilt trips then. Sendin you my heartfelt condolences,;hugs and prayers. Carol

idsde

GlowMore's picture
GlowMore
Posts: 363
Joined: Feb 2008

Very sorry to hear of loss of your Mother Mj.    I still miss mine and she died when I was 25....but I still miss her very much.  She would have been 100 this year.  I hope that you will soon feel better with all your pain and hope you can find peace knowing your Mom is not suffering anymore.  My goodness living to 95 is a wonderful thing.  I'm 78 and do not imagine I will make it to 95...actually I didn't think I'd make it to 70 either....but none of us know the time or the place.   You were a Blessing to your Mother and you can take pride in being there for her.

 

carkris's picture
carkris
Posts: 4529
Joined: Aug 2009

so sorry about your mom.

I ache all over too, but find it is worse when my diet is worse, if i eat sugar, or too much salt, everything hurts. I feel fantasic when I eat lots of fruit and veggies and avoid esp sugar. yoga has helped me too.

mj_weis
Posts: 45
Joined: Sep 2013

It seems when I'm under stress, eating is the last thing on my mind.  Since my diagnosis and after having my gallbladder taken out I have lost 50 pounds and did not try to.  I know I'm not eating well now and that should be an important thing for me to be thinking about, but I have no appetite at all.  I'm sure once I get over my grief, I will straighten out I will get better.  I am going to visit my daughter for 9 days and I'm sure her goal will be to fatten me up!

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