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Survivor- how long until I feel strong?

hope4thebest's picture
hope4thebest
Posts: 108
Joined: Aug 2012

Hi, I haven't posted in a long time, I have been on vacation and busy with life.  Going pretty good, I have been visiting friends all over and only got sick once with a virus.  It was bad and left me in bed for a few weeks, but otherwise it was nice to live again.  Leaving home allowed me to really get some distance from the cancer situation.  I have dealt with it on many levels, but am having a hard time with the physical pain associated with a bilateral mastectomy with reconstruction still lingering.

I am lucky to have had a successful reconstuction and still feel pain, I want to take pain meds, narcotics, and my Dr is putting the foot down.  Dr does not understand what kind of pain I have, and I try to explain that it is muscular, mostly in my back and the left shoulder, will go up into neck, etc... and Iapparently I do not seem authentic.  At least the oncologist also observed that the reconstruction is often harder than the mastectomy, confirming my challenge.  I have a general tightness in my chest that has gotten bad because I have been very emotional, putting alot of pressure on my lungs and all those muscles in there.  I am finally getting over anemia, so the genral weakness that I have had for the past 2 years is dissipating.

Dr says I may have fibromayalgia, I do not agree at all, I am just trying to recover the best I can.  Doing yoga and swimming and they make me even more sore.  Any advice from my pink ladies?  How long will I feel so uncomfortable?  SHould I just suffer and deal with the discomfort and get off the pain meds?  I am an emotional mess and starting to get upset with my Dr for not understanding that I am coping with these pain meds, and have been for over 2 years.  Do they just expect that I stop cold turkey?  Should I just do that and deal with my new life?

Confused, but doing much better than last year.  I went home to see my family and they were all nice, busy living their lives.  Mine has become so much different, but I am ok with that.  I go to bed early now!

 

 

 

 

 

 

 

 

 

 

 

Cricket64
Posts: 63
Joined: Sep 2013

One of the best things I've read about moving on as a cancer survivor, instead of a patient, is that we all have to do in our own way, and on our own time line.  There is no one answer, for me, in two weeks, I will be two years out from my last phase as a patient, lumpectomy, 8 chemos, 36 radiations, and side effects that probably are here to stay.  I have an extremely support cancer center, and medicial team.  If your doctor isn't listening to you, perhaps you want a second opinion.  My current 'lesson' is trying to master guided imagery, to both calm my mind, release tension, and deal with pain.  And the this CSN has been very helpful.  I only joined a month ago, don't know why I didn't join before, because it really does help to vent/share with others who have been there, done that, and trying to move on.

kamcat1962's picture
kamcat1962
Posts: 40
Joined: Mar 2013

As Cricket said there is no timeline each one of us is different but I do believe that if you get the support you need you will be strong. Strength will give you the courage and determination to decide what is best for you.  It is your body and your life. You have to be your own advocate  of the care you get. I keep learning the hard way and assuming that the doctors know what is best for me.  They are knowledgeable about the disease but I think sometimes they are less attentive about the after effects both physically and emotionally. This is where we need to step up and say: "hey, remember me, well I am in pain and my quality of life stinks or I can't work anymore becaise the neuropathy in my hands is so bad, or i can't sleep at night because i am so anxious about my disease.)  These I think are all the things that seem to get "lost in translation".  If your not happy with your doctor's opinion find a new one.  YOU HAVE EVERY RIGHT TO DO IT.  DON'T LET YOURSELLF OR YOUR MEDICAL TEAM MAKE YOU  FEEL LIKE YOU ARE BEING A BAD OR DIFFICULT PATIENT. YOU ARE TRYING TO BE A SURVIVOR!

I have an internal pain pump but it manages my cancer pain. However maybe it could be an option for you.  The medical facilities I go to have a Pain Management Dept., maybe you could seek out one in your area.  They are very in tune with the pain associated with cancer and it's after effects. I hope that you are able to find a solution to your pain issue.  I lived with pain for a better part of my life (degenerative disc disease) but it wasn't until I decided"enough is enough" and found something different that I finally got relief and with that quality of life and a bright new outlook on my world. I pray that you find the relief you need and the peace of mind you seek.It will come buT when you are ready  and not when someone else says so. Enjoy each day you have. Relish all the good things that happen and they will wash away the bad ones. Here is  a  little trick I started a couple of months ago.  Instead of journaling (which i find sometimes gets me down)) I write down 3 things thar happened that day that made me feel good or better about myself.  Then when I am feeling a little out of sorts or down I go back and look at it and remember a special day. It makes me remember that it is the little things in life that are usually the best and savor life one day at a time. Take care and know that prayers and hopes for you are coming your way.  Bless you, Cathy K.

VickiSam's picture
VickiSam
Posts: 8476
Joined: Aug 2009

fatigue after my multiple surgeries, and chemo therapy.  3 years out, no joke, I continue with fatigue - even tho it has gotten so much better.  There are still days that I am zapped of my energy -- but I fight on.  I found that walking  helps.

 

Vicki Sam

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