My body, this stranger

Anonymous · May 2012

DX was a major psychological trauma. Treatment was a major physical trauma. I now feel a disconnect between ‘me' my mind and ‘me' my body.

I used to be pretty comfortable and mildly satisfied with my body. I never consciously did anything to harm it in any way. I must admit though that I have been hard on my body, always believing it would take me to where I needed to go and do what needed to be done. I fed it well, never exercised as much as I should have, but then it has always been a very active and busy body.

And now, I want to do everything I can to help it out, to feed it well so that it can live a long pain and cancer free life.

But, I don't know this stranger anymore. I don't know what it wants or needs and don't know quite what to do with it. It seems to need and require so much attention these days !! I see it, but can hardly feel it. It's just there, my fingers typing, my legs walking. I do not feel a connection anymore.

Am I alone in feeling this ?

sewingnut · May 2012

You are not alone. ((((hugs))))

Anonymous · May 2012

((((Hugs back)))) Sewingnut

Kayb, I'm sure you're right - will have to ask the boss (the body). Am sure the answer will be a resounding 'out of the question!'

If only my will could win the battle to at least get on the rebounder.

It's still a weird unexplicable feeling though, almost unreal

Linda-n3 · May 2012

Maud, you are NOT alone! Hugs! Not easy to describe the disconnectedness. Am currently trying to do yoga (gentle yoga to start with) and just walking. Trying to do those things to get my arms strengthened, trying to get past the lingering variety of pains from chemo, surgery, deconditioning, depression, etc. Are you seeing a professional counselor? That can also be helpful if you find the right one- I see a woman who was an oncology nurse and she "gets it" even though she has not personally had cancer. And if you find any good way to get that body back into action, past the inertia and general sluggishness, please let me know!!! I can use some help, too!

Anonymous · May 2012

Hi Linda, yoga sounds really good. I feel that if I could get my body in the right place, then I'll somehow be able to reconnect. Like everyone else I guess, I had to detach from my body throughout treatments. My mind just went somewhere else when they stuck the IVs in my arm for chemo or when I felt claustrophobic during radiation treatments (I remember one day bursting into tears) the sound of those machines was so awful. I still feel like a robot before and during the damn scans or MRIs and after, waiting for results or when I have to march into the onco's office. Somehow, I manage to appear calm but I can barely put one foot in front of the other. I have been going through the motions, but my heart got left behind somewhere along the way. I guess it's kind of like a defense mechanism to not feel anything. I wish I could find someone to talk to, but I have a real hard time relating to people who are not in my shoes. That's why I'm so thankful for my sisters here.

The fact that there is residual damage to my brain - I can't help thinking that some critical neurons died and will never recover. Plus, I'm sure that the hormonal tornadoe our bodies are subjected to has a lot to do with our sense of well being or lack thereof. I'll be googling to find out exactly what could be SEs from anesthesia - I had to go down twice within two weeks for revision of margins. Second time around, they had a hard time awakening me, slapping me in the face and oxygen mask, god, I wish I could black out the bad memories.

Hugs to you for listening and caring

Linda-n3 · May 2012

Maud, I really get what you are saying about those neurons that either died or lost connections. Something I find encouraging is the research that has demonstrated that our brains have something called "neuroplasticity" and that new connections can be made all the time, that we actually strengthen parts of our brain by using them. I meet with a mindfulness-based cancer survivors group, and our leader was talking about this last night.

If you are the inquisitive type, I would suggest you read a book by Jon Kabat-Zin called something like "Full Catastrophe Living" where he talks about using mindfulness to get through stress. He doesn't address that "loss of heart" feeling that you describe - a feeling I know VERY well! For that I think professional counseling may be more helpful.

I spent 2 days reading a novel by Maeve Binchy this week, not doing anything that "needed" to be done, just not caring. But somewhere in that time lost in reading, I got a very small glimmer of light through the clouds, just enough to give me hope that MAYBE SOME DAY it will be just partly cloudy rather than cloudy with storms.

It is VERY hard to talk to others sometimes, and some days I just want to completely withdraw, curl up in bed, shut the world out. But I know this is not good for me, so force myself to get out and about, joined a study group (main point is fellowship and lunch out afterward!!) and made myself go to the support group each week. I was opposed to joining a face-to-face support group, but it turned out to be one of the better things I have done - I think it was an opportunity to offer support to the others, like here on the BCO boards, that was good for me. I think we all like to help others, and it is through this that we can learn to love ourselves again (not easy for me to love myself, as I suspect you are similar right now).

Now maybe I will go do a few yoga poses and just breathe for a bit.

Hugs back to you. We are in this together.

Anonymous · May 2012

Maud- I was scrolling through the active topics and the title of your thread caught my eye. What you wrote is exactly the way I am feeling. I am 2 years out from MX and still have yet to get reacquainted with the new me. There's a definite disconnect that's a combination of so many things- having a large portion of my body that feels numb to the touch, the unfamiliar (even after all this time) weight of the implants, LE complications, weight gain from now being in menopause and the inexplicable sadness I see in my eyes and face. I feel like I no longer recognize myself. I miss the days I took for granted walking around being comfortable in my own skin and wonder if I'll ever feel that way again. I think, like you said for you, it's changed more than my shell, though. I, too, have a hard time relating to other non-BC people. I think that's why I spend so much time on here. Living in the "real world" seems to take more effort than I have to give these days.

(BTW, I definitely believe, though, the anesthesia can do a number on you mentally. My doctor told me for every hour you are under it can take you a month to recover- physically and cognitively. I didn't do chemo but I'm sure that doubles the equation.)

Anonymous · May 2012

Linda, thank you so much for the title, will add it to my reading list. I don't know the author but mindfulness is right up my alley Have got to work on those brain plasticity exercises. Have you heard of Dr. Amen, a specialist in that field ?

Love not doing anything ! just getting lost in a book or movie. Part of the issue I'm facing I think is that all I want to do is escape my harsh reality, my mind just wants to wander and dream of a better place.

You say, we all like to help others, and it is through this that we can learn to love ourselves again. You are so right Linda, thank you so much for your thoughtful post, big hugs

Kate, hi, really glad you're sharing your thoughts, helps me put things in perspective, and I'm feeling less alone knowing other sisters experience the same, you sound so much like me, gentle hugs

I did google a bit re: SEs from anesthesia, not pretty....

Delirium from anesthesia - mental confusion

Mental confusion, usually temporary, may persist after anesthesia with possible long-term problems especially in the elderly. It may also progress to a more serious altered mental status called delirium in which the patient's response to the environment is severely impaired according to MayoClinic.com

Signs and symptoms of delirium usually appear in a short period of time, from a few hours to a few days. The symptoms often fluctuate throughout the day. Therefore, a person may have periods of no symptoms. The primary signs and symptoms of delirium include the following factors.

Reduced awareness of the environment - this may result in:

• An inability to stay focused on a topic
• Wandering attention
• Getting stuck on an idea rather than responding to questions or conversation
• Being easily distracted by unimportant things

Cognitive impairment, or poor thinking skills - this may appear as:

• Poor memory, particularly of recent events
• Disorientation, or not knowing where one is, who one is or what time of day it is
• Difficulty speaking or recalling words
• Rambling or nonsense speech
• Difficulty understanding speech
• Difficulty reading or writing

Other common symptoms

• Seeing things that don't exist (hallucinations)
• Agitation, irritability or combative behavior
• Little or no activity or little response to the environment
• Disturbed sleep habits
• Extreme emotions, such as fear, anxiety, anger or depression

http://www.mayoclinic.com/health/delirium/DS01064/DSECTION=symptoms

Post Operative Cognitive Disorder (POCD)

http://www.anesthesiasideeffects.com/Journal-Articles-and-Studies/

There was a lady who posted a while back about hallucinating, she was extremely anxious. I really really hope she is still here (I cannot remember her name) and reads this. To have an explanation of why we are the way we are now....is such a huge relief

cs34 · May 2012

Oh, you are so not alone in this. I've often wondered why I never began trying to lose the extra 60 lbs I have to lose and why I don't feed it better and what I came up with, for me, was that I am angry at my body. It failed me.

What happens if I treat it well, do everything I'm supposed to do and it fails me again? I just don't know that I have the composure to accept that. Staying at this weight is far more damaging and I have to get a move on it here (which I have started to do physically) but I do do it cautiously. It surprised/surprises me that I'm not running to every doctor or farm<being dramatic here, to buy all vegatables and feed it only good stuff but I can only say that it's taking time to accept all that happened to me.

It's actually three years ago today that I had my first chemo treatment. I've come so far but I can't say that the whole ordeal is at a complete mentally healthy level in my heart and mind. When I stop and think about how "normal" my life is now, I do get fearful but I quickly put it out of my mind.

Anyway, back on point here...I think forgiving our body that failed us may be the first thing to do. I try to and I dont' think I've quite gotten there yet but maybe others can do it quicker/better than me and it can help them.

Wishing you all a peaceful day.

Anonymous · May 2012

cs34- Struggling with motivation, eating poorly, not exercising, gaining weight, being depressed about gaining weight- I couldn't figure out why all this was happening so far out from treatment and then I read your post. I realized then that I, too, am angry at my body and feeling betrayed by it. So guess unconsciously I was punishing it also. Funny how someone's perspective about themselves can shine a light on us as well. Thank you.

cs34 · May 2012

hi Kate, how do we "forgive" it though? To forgive it, i believe, comes also with an acceptance that we have zero control no matter what we do and I just don't think that I want to work that hard at something, be gentle and kind, to have it betray me all over again. The betrayal would come at me a zillion fold and I would lose my mind.

I've had too much hard work to do already between the operations, chemo, rads, ooph, menopause, hot flashes, no boobs, rib pain, neuropathy, joint pain, leg aches and just my life being different. Just different.

Accepting the difference/"new normal" (GOSH, i hate those words) is just starting to happen for me. I guess the forgiveness will come next?

I went to Disney with my friends and was beyond scared of being "the sick kid" who couldn't keep up because of my leg pains, etc... Well, I succumbed and took the advils every four hours, spent a LOT of money on "good" sneakers, went to City Hall in the Disney park and told them I had cancer and have bad leg pains and they gave me a pass to skip the wait in line so I didn't have to stand there for hours. I cried when I asked for it because I had to "own it" but I must say that it was freeing for me to do it and I also rocked a strapless dress (with my port scar) hanging out like it was nothing! Felt pretty good. Maybe forgiving my body is just around the corner? :-) I certainly hope so.

Anyway, I am happy that it resonated with you and maybe it's something to work on now? I can only hope it helps you.

Anonymous · May 2012

cs34- Have to admit I'm still working on the forgiveness part. I guess I can look back on the past and tell my body- "Well, thanks for those first 50 years. Those were great!"

Glad you got some benefits even if it's just moving to the front of the line at Disneyland. I say we should take whatever we can get because the scorecard is still uneven. Smile

My body, this stranger

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