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some thoughts on the "battle" metaphor...and goodbye to this board

caedmon22's picture
caedmon22
Posts: 22
Joined: Apr 2015

i've been on this board for a while, posted a bit, read a lot of posts...haven't really seemed to connect with any of you beautiful women and you haven't connected with me either -- ie i don't get responses to my posts or comments. i feel excluded. i see other women being welcomed. nobody has welcomed me. maybe because even though my cancer was clear cell, i was 1a and may be done. maybe not but may be. 

today i had my 4-months-after-radiation check with my gyn onc. she said "you're fabulous." she believes we got it, even though it is clear cell. she believes i am done with cancer. i'll have a check with her and my regular gyn every three months, alternating. for a year. then every 6 months. 

i participate actively on another board. i won't be coming back here, because why would i? you girls have a clique. you have not welcomed me to it. but here is what i posted, and i'm leaving it here on the off chance it might inspire anybody.

from one of the most amazing and knowledgeable women on my hystersisters cancer board, just now, on the thread i started with the piece i posted here a few days ago, re our conversation about how the whole "battle it" metaphor doesn't work for us.

i wrote about how i didn't make a decision to fight and live, i made a decision to surrender and love.

we both wrote about how cancer cells are still our own cells. they are part of our body. yes. they need to be cut out or killed b/c if we don't do that they will kill the whole body. but they are still family members.

i wrote about how i had gotten, very early on, that these cells have forgotten who they are. they aren't intending to kill anybody. much as we humans have forgotten who we are (emanations of god on a beautiful planet). we aren't intending to kill the planet. but the outcome of forgetting is that we are killing the planet. just as our cancer cells kill us without intending to.

and because of that i couldn't "battle" and i couldn't "hate" these cells. i had to do what i had to do to get them out of the body. but hate and battle had nothing to do with it.

she wrote about how while undergoing treatment she didn't focus on "battling" the cancer cells. she focused on supporting the healthy cells. (which is what i did as well. sent love to the cancer cells. told them i'm sorry i have to do this to them. then focused on the healthy cells and said "go forth and multiply, lovelies...").

then she wrote:

"One way of being strong is to be a good fighter. But another way of being strong is to be a good healer."

pretty much says it all.

i wrote: "i want a t-shirt with that on it."

goodbye csn ladies. may you win your battles.

AWK
Posts: 364
Joined: Mar 2013

I feel terribly.  No one should feel alone or excluded on this journey which is already so lonely for so many.  I have read your posts and appreciate your sharing of your feelings and experience.  It means so much and I am sorry if I didn't respond directly.  

I am dealing with my journey with cancer as living with it, I am sometimes in a fight with it but really my focus is life and living fully.  I think of myself as a Thriver not a survivor.  Does that make sense?  Because I want to live fully and keep  stress levels down.

know that we are always here for you and I will keep you in my prayers.  Sending you the SS and T vibes or Stay Strong and Thrive.  

Hugs - Anne

caedmon22's picture
caedmon22
Posts: 22
Joined: Apr 2015

made me cry to see your response...i do appreciate you too. hugs back. and thanks. really didn't expect anybody to respond. glad i popped back in. i think the feeling so alone is almost the worst of it. xoox

melwithbooks
Posts: 12
Joined: Oct 2015

People need to hear stories like yours to know that cancer can be survived, I know your story gave me hope for my mom and that is hard to come by these days. She has stage 3 uterine cancer and she is in her second week of radiation. Are there any tips you could give me to give to her.

molimoli
Posts: 514
Joined: Aug 2014

caedmon22 please know that none of it was intended by me or anyone on this board, I am very sure of that.We have all gotten caught up in the Chemo vibe , who is starting ,who is doing well or struggling with it , mets and who is refusing, fighting the inevitable chemosabe title.We've been flooded with resent deaths  that robbed us of our usual mojo, it has been a weird period of time ,in that sometimes we check the board but can't muster up the mental energy to post or reply, yet deeply care about everyone's issues  but caring on our own.I vow to  care out loud in the future so no one will  again feel the way you expressed,no one else.

I have admired your smile ,not to mention your funky hair color, on two occasions wanting to let you know , too bad I didn't , I am confessing to feeling ashamed that I kept the thought to myself.brain lazy I  am truly sorry.

I haven't  noticed the clique factor here but I admit sometimes subject matter dominates.

Thank you for calling us out on this , You have voiced your disappointment, you have been heard ,feelings validated . We have dropped the ball but it is not heavy we will pick it up again , you'll see ,Please stay and accept our apology for the 'slight' you feel .

No doubt the other ladies feel the same as I do. I am hugging, hope you can visualize and feel it. Nuff love Moli. Come back please!!!

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1322
Joined: Jun 2015

Sorry you felt excluded. Like others have said, many of us are dealing with our own issues and have been doing our best to keep things afloat.

I think we all come and go on our responses to things depending on where we are in that moment of reading a post. Sometimes I read them, appreciate them, find strength in them but just don't have the energy to reply back. Always with good intentions to come back to that later!

Please know that there are many warm, compassionate, caring women on this board. I hope you stay with us.

Congrats on your great news from the doctor! We all celebrate that for sure.

Love and Hugs,

Cindi

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

All of you ladies are so sweet, understanding, calm and just plain nice!  I am not so much, just me.  I belong to several boards, but don't go to them because it's just not "home".  Some sites just "feel" more homelike to different people.  We don't exclude anyone and for the most part, we don't argue or take sides.  We all go through our own hell in our own lives.  I don't respond much, since I was dx in July of 2009, I fear giving someone "old" information on drugs, treatment, ect.  I am sorry you feel excluded, it was not intended.  As Moli says, Nuff Said!  Best, Debra

NoTimeForCancer's picture
NoTimeForCancer
Posts: 1950
Joined: Mar 2013

I apologize.  I would agree with your gyn onc you are FABULOUS.  I have very much appreciated your comments and support and am sorry you feel excluded.  It was never my intent.

I pray for all the warriors and never wanted to hurt someone.  I am sorry.  I do hope you stop back here just you can see you HAVE touched people's lives.  

There are times the threads get so long, with so many responses I have a hard time FINDING the new ones and the beautiful ladies get lost.     

ConnieSW's picture
ConnieSW
Posts: 1203
Joined: Jun 2012

A couple years ago the same thing happened with another new poster.  Luckily she did give us a second chance and became a regular.  When she could no longer post, her sister took over for her and we stayed together until her death.

like you, i am stage 1, more than 3 1/2 years NED, so I sometimes feel a bit guilty and figure I don't have anything useful to offer those less fortunate.  Also, sometimes I just need to take a break from posting.  So many ladies are gone and it hurts.

i, too, immediately responded to your picture and thought that you look like a fun lady I'd love to know.  Every time it pops up, you make me smile.  I hope you reconsider since I know your experience will make you especially sensitive to other newbies so the same thing doesn't happen again.

if you do decide not to stay, I appreciate you taking the time to say goodbye.  Many don't and I remember and fret about them

Cucu me
Posts: 214
Joined: Apr 2015

don't leave us, whatever and whenever you think happened no one did it by purpose.

You are one of us.

Wish luck to all of us

Abbycat2's picture
Abbycat2
Posts: 573
Joined: Feb 2014

 

Caedmon, I echo the sentiments of the other ladies who responded to your post.  Please stay and forgive me if I have been insensitive.  No one on this Board fighting cancer should ever, ever feel alone.  Like Moli, I wanted to tell you that I liked your funky hair style and your warm, friendly smile.  So often we think such kind thoughts and never realize how important it may be to the recipient to actually hear the words out loud.    I hope that you reconsider and remain with us here, as we need you, too.

Warm Wishes,

Cathy 

cleo
Posts: 145
Joined: Sep 2009

Caedmon you are not alone.  I joined many years ago and still keep an eye on the board but never have felt as though I am part of it.  Have wondered why and do accept that I do not live in the USA and treatments differ.   This journey is about learning...we are all different and who knows what may help an individual.  I wish you well.

Celia

Lou Ann M's picture
Lou Ann M
Posts: 987
Joined: Feb 2015

and so sorry that this happened.  I am sure that no one wanted or tried to exclude you.  I for one usually do more reading then writing.  I have read most of your posts and found them to be very imformative.  I am glad you came here to expressour feelings, and I am so happy that you are in the place with your cancer that you are.  You are doing awesome  keep it up girl.

I have had some hard times the last couple of months, and I had a few weeks were I didn't even feel strong enough to read posts and then was overwelmed when i checked and found many posts that I had missed so I didn't write on any for awhile.  I still have times when I just don't feel srong enough to post and then other times when I an not sure I can add anything to something already well said.  I hope you stay.  This is a great bunch of ladies.  Hugs and prayers, Lou Ann

Lily_Anne
Posts: 39
Joined: Aug 2015

I haven't been here long, I belong to quite a few forums and I am in the UK so not sure my posts are always understood as our treatment system here is so different. I received some lovely pm's from Moli but other than that I don't feel 'part of the group' either, but it takes time.  Cancer is so scary and when you visit often and write even without response, you know that someone still reads, and many do not feel comfortable writing. I find writing lets off the steam I can't share elsewhere, I'm a prolific blogger, so I'm a rambler. 

I don't believe your posts were ever unwanted or ignored for any reason other than this cancer lark is just so exhausting.  I was diagnosed 1C and it's back after 3 years of nothingness. It never goes away. I was also clear cell and doctor's pet, he is as shocked as I am.

However we all need each other whether we demonstrate it or not. So leaving helps nobody. Forums take time to build and so do the relationships on them. Stay awhile and see.

LA

HellieC's picture
HellieC
Posts: 524
Joined: Nov 2010

I'm so sorry to read that you haven't felt supported on this board.  As the other ladies have said, there are many reasons why a response to a post may not be forthcoming.  Sometimes we each need to take a break from the boards, we may be in treatment  or awaiting results, or we may have temporarily lost our mojo because we have lost fellow warriors and it hurts to come here for a while.  Or we may feel that we don't have the knowledge or experience to offer support for a particular question or problem.

But please know that this is not because there is some sort of clique.  The ladies here have the biggest hearts and I know that they will all feel, as do I, very sad that you should feel this way.

Kindest wishes
Helen xx

caedmon22's picture
caedmon22
Posts: 22
Joined: Apr 2015

hi beautifuls -- thank you all for your heartfelt responses. i am so sorry if my post made any of you feel bad. somebody messaged me and said "you're in a dark place and i think you've misjudged the ladies on this board." she is right. i am in a dark place right now. and "excluded" was not the right word. probably more accurate would have been to say "i feel left out" -- which is MY feeling and not a judgement on you all. good grief. we're experiencing cancer. some of us way more intensely than others. i am so sorry to have added even a smidgin to that burden for any of you. i was just expressing my feelings and the truth is, i would have done better to keep it to my journal. because it isn't a judgment on you all at all. anyway. i'm blathering again. truth is i am in a very dark place right now. and actually shouldn't be on social media at all. i'm a bit of a loose cannon. so instead i'm hiking mount shasta every day and signed up for natural horsemanship classes at a nearby ranch. i think i need to put the subject of cancer on the shelf for a bit. that is not a judgment on you all. it's just what i need to do. bless you all and thank you for the graciousnesses of your responses. lots of love and hugs -- caedmon

AWK
Posts: 364
Joined: Mar 2013

We do need those breaks.  No need to apologize at all.  I had some really dark days and started riding again, went  a light antidepressant and drove out to the beach for walks as needed.   hugs.  Anne

Double Whammy's picture
Double Whammy
Posts: 2805
Joined: Jun 2010

I'm so sorry you feel hurt and I hope we can encourage you to return.  I don't post a whole lot because I had the "good kind" of endometrial cancer but I check in often because I feel a connection with many of the women on this board.  I need to know how everyone is doing and I'm sure hoping your dark place will lighten and you will stay with us and I can see you're doing well.  Since I was diagnosed, I have lost 2 close personal friends to UPSC, and I have learned a lot about the trials and tribulations of the Type 2 endometrial cancers.  Without this group, I would  not have understood the difference in my Type 1 endo cancer and their UPSC.  I simply would not have gotten it.  I hope you will stay and learn and altho your cancer has a different name, I think you can gain a lot of knowledge, help and hope from this group.  Please give us another chance.

Now - hiking Mount Shasta?  I'm not too far away from Mt. Shasta.  Well, I'm by Sacramento, but it's not really that far.

Suzanne

NoTimeForCancer's picture
NoTimeForCancer
Posts: 1950
Joined: Mar 2013

Suzanne, type I, type II, you always have great things to add to the conversation!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 1950
Joined: Mar 2013

Oh caedmon, I think we do understand about the "dark space".  Mount Shasta and riding sounds like a better option than chatting on the board.  I only ask you check in with us every now and then as we really do worry about you if we don't hear from you. 

Hang on!  One of your cheerleaders. 

daylady's picture
daylady
Posts: 122
Joined: Dec 2014

Hang with us... I read the posts on this board, and sometimes posted/replied, a lot did not.  It was hard to reach out and touch something I was trying so hard to knock out of my life.  It was as though just being here sometimes gave energy to the very thing I was trying to avoid!  I am better, but it has taken time.  Sometimes I need to be away from "all things cancer" and that incudes the boards.  Other times I need to reach out, or have someone to share good news with who really, really understands how incredible good news is.  I never worry if no one responds.  I just tell myself that there may be someone out there who needs to hear my news and on that day I am speaking in a dialect they happen to hear.  It's all good.  I am sending you best wishes for a brighter place, a lighter time, and a speedy healing journey.  Warm hugs. - Helen

flyerette65
Posts: 65
Joined: Oct 2014

I know we all go to "that dark place" and we all have difficulties.  It has been a difficult year for me--October 2014-2015.  Just in the past 4 months I lost my mom to metatastic breast cancer, found out my estranged husband has prostate cancer and that he has gained about 75 pounds from whatever type of treatment he is receiving for whatever type of cancer he has, it may not be prostate but kidney or bladder. I don't know because he won't answer my texts or phone calls. One of my best friends has a recurrence of lymphoma.  Eight years ago she had a anogulous (sp) stem cell transplant after chemo and radiation didn't get rid of the lymphoma.  She will now have more chemo and IF she goes into a good remission she can then have a donor stem cell transplant which comes which a whole slew of potential problems.  She will need immuno suppresant drugs for 6-8 months and will have to wear a mask during that time whenever she goes out in public.Three year Survival rate for her aggressive lymphoma is only 30-40%. I was diagnosed with a pubic bone stress fracture 8 months ago which still bothers me, some days it hurts so much I can barely walk.  Of course, my mind goes to that dark place wondering if it's bone cancer since I had Stage 3A, Grade 4 UPSC 4 years, 5 months ago. I had a weird hemmorage back in December  forwhich I had to have cystoscopy under anesthesia to rule out bladder cancer, and life still must go on and sometimes gets complicated with problems my kids, grandkids or friends are having. I don't respond to a lot of posts because most of the replies have all ready covered whatever I would have said, and said it much more eloquently. Plus I have not had near the problems that a lot of you have had or have, but I feel for all of you and think you all are some of the bravest women I know. (At least not yet but sometimes feel like I'm sitting on a keg of dynamite). We don't want you to feel neglected or ignored or "left out".  We don't want you to leave even if you are a loose canon (me too)! Hang in there, girlfriend!

 

molimoli
Posts: 514
Joined: Aug 2014

Happy to see you some-what back , Thanks for not holding us to perfection.If you had left your feelings in that journal ,how would you have known that we  care? We really do care and wish you well, and I so  love your countenance. Sorry about the darkness,don't hug it or let it tarry too long , don't worry about the locked doors, open windows,the darkness will crawl away from you a little piece at a time.For you that's my prayer ,my hope, my wish.

You ain't  heavy sister,Nuff nuff love. Moli.

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