Bitter feelings

dixchi · August 2008

I identified with your feelings about people's responses. I have a friend of 30+ years who has
upset me more than once with her responses or lack thereof. She has been quicker with the digging reply than with a hug or positive upbeat
supportive word. I finally wrote her a note and
expressed my upset; it may be the end of the
relationship or a fresh start. But I could not
let it go on without saying something.

DanK · August 2008

Bitter Feelings
After my ileostomy was reversed, and the follow-up scans and tests showed no recurrance of my colon cancer, everyone acted like I was, or should be, back to my old self. After having an ileostomy for 12 months, and now 6 months into the reversal, I can say I am anywhere but being back to my old self. My Gastrointerologist suspects it might take me up to 2 years for my colon to be back to a new "normal." Which for me, normal now means manageable. Or predictable. Unfortunately I needed another surgery last week for a hernia, that was a result of multiple abdominal surgeries when my resection went bad. This has set things back at least several months, not to mention being my 4th surgery going through this. And all for what ended up being diagnosed as an early stage 2, or late stage 1 tumor. It can and does get one down at times, as no one can appreciate the lost quality of life like the patient themself. I am sorry not to have any answers, but I certainly understand your feelings. Dan

msccolon · August 2008

DanK said:
Bitter Feelings
After my ileostomy was reversed, and the follow-up scans and tests showed no recurrance of my colon cancer, everyone acted like I was, or should be, back to my old self. After having an ileostomy for 12 months, and now 6 months into the reversal, I can say I am anywhere but being back to my old self. My Gastrointerologist suspects it might take me up to 2 years for my colon to be back to a new "normal." Which for me, normal now means manageable. Or predictable. Unfortunately I needed another surgery last week for a hernia, that was a result of multiple abdominal surgeries when my resection went bad. This has set things back at least several months, not to mention being my 4th surgery going through this. And all for what ended up being diagnosed as an early stage 2, or late stage 1 tumor. It can and does get one down at times, as no one can appreciate the lost quality of life like the patient themself. I am sorry not to have any answers, but I certainly understand your feelings. Dan

Back to normal
Dan, you hit the nail on the head when you mentioned the cluelessness (i suppose a new word!)of people who expect us to return to normal as soon as the surgeries and treatments are over. As much as we try, that fear of recurrence and the daily struggle with changes that will never return to "normal" stays with us. While it certainly is WAY better than it was while on active treatment, the beast has left us battle scarred. I think in that way, only those of use who have traveled that road can truly understand just how hard and how different "normal" is.
Mary

Unknown · August 2008

msccolon said:
Back to normal
Dan, you hit the nail on the head when you mentioned the cluelessness (i suppose a new word!)of people who expect us to return to normal as soon as the surgeries and treatments are over. As much as we try, that fear of recurrence and the daily struggle with changes that will never return to "normal" stays with us. While it certainly is WAY better than it was while on active treatment, the beast has left us battle scarred. I think in that way, only those of use who have traveled that road can truly understand just how hard and how different "normal" is.
Mary

This comment has been removed by the Moderator

ccstinks · August 2008

So you have stage 1 and your
So you have stage 1 and your not getting enough sympathy. I will trade you for my wifes stage 4 dx where she gets plenty of tears from my underage children who worry about her. Please remember that there are many in those shoes on this site.

You may want to take time to be grateful for not having to go through chemo and the very real fear many of us have of not surviving.

I think your family loves you and thought that all would be well with you.

Sorry but kiss and hug your close family because they really do love you and your going to be fine.

Unknown · August 2008

ccstinks said:
So you have stage 1 and your
So you have stage 1 and your not getting enough sympathy. I will trade you for my wifes stage 4 dx where she gets plenty of tears from my underage children who worry about her. Please remember that there are many in those shoes on this site.

You may want to take time to be grateful for not having to go through chemo and the very real fear many of us have of not surviving.

I think your family loves you and thought that all would be well with you.

Sorry but kiss and hug your close family because they really do love you and your going to be fine.

This comment has been removed by the Moderator

spongebob · August 2008

OK, I'VE GOT TO CHIME IN HERE...
If you want to talk about lack of family support, I will be happy to share my story about getting served divorce papers in the hospital after stage III surgery...and then having to
fight a nasty divorce while in chemo... and having to get a second job to pay the massive legal and other bills while in chemo... but that's all water under the bridge.

More importantly, I know that there is probably someone out there who has an even crappier situation he or she can relate... But that's neither here nor there.

Gail - we're here to give you an opportunity to vent; that's part of the service this wonderful site provides. We're also here to give you support - when you ask for it (which I fully acknowledge you didn't in your post). And some folks feel compelled to comment or give advice anyway - comes with the territory of posting on an open forum like this - especially one where people's emotions might be pretty raw already due to circumstances in their lives.

I am glad you and your faily are talking. I won't tell you that different people express their emotions in different ways because you didn't want for me to say that. I hope that by talking with them it becomes evident to you that they do really care. I'm glad you came here and vented - holding emotions inside, in my opinion, is a great cancer-enabling practice that we need to put a stop to in our lives. I hope that the words folks have written you here have encouraged you to stand up and be a fighter against this dragon and not be its victim.

Love strong

- SB

2bhealed · August 2008

VENT AWAY!
Hi Gail,

Boy did you open an emotional can of worms for me! my kids were all youngish and dealt with this in their own young way. But the adults around me were what compelled me to write them letters of release.....to my in-laws especially. My MIL did not acknowlege to ME my dx. No flowers no note no nothing. Same for my FIL who was divorced from MIL. My own sister fussed at me for the way she found out and it became all about her. Friends drifted away.....good riddance then.

But, ladies at a church I hardly knew brought meals for my family. Neighbors took care of my 5 kids taking them to movies and out for dinner. My parents left their home and temporarily moved up to MN to take care of my family. And I was able to release many toxic relationships (mostly my in-laws) totally guilt free! yippee!

This forum was my life saver at the time. People on here "Got It" and I so appreciated that. So vent away anytime.

peace, emily

tootsie1 · August 2008

ccstinks said:
So you have stage 1 and your
So you have stage 1 and your not getting enough sympathy. I will trade you for my wifes stage 4 dx where she gets plenty of tears from my underage children who worry about her. Please remember that there are many in those shoes on this site.

You may want to take time to be grateful for not having to go through chemo and the very real fear many of us have of not surviving.

I think your family loves you and thought that all would be well with you.

Sorry but kiss and hug your close family because they really do love you and your going to be fine.

I'm really glad that I was
I'm really glad that I was out of town and didn't see your post until some very nice people had already told you that your remarks were rude. Yes, I know I was diagnosed Stage 1, and I know how lucky I was to have my cancer found before it got farther than that. If I'm lucky, the physical part is done for me. However, it COULD come back. The emotional part is what doesn't get removed as easily. You may or may not have read some of my other posts in which I referred to my husband's sudden cardiac arrest. We live every day with his heart problem and the fact that at any moment on any day he might have another rhythm disturbance from which they WON'T be able to bring him back. So I was already a bit stressed in my life before this.

Regardless, I am a praying Christian and usually very positive. If you knew me in my "real" life, I think you would see why I have lots of friends and am generally considered a good person. I just happened to be having a bad day that day and shared my feelings here, because I knew people would understand and help me. It's hard to talk about some things with people who haven't had cancer, because they just haven't experienced the same feelings.

I'm very sorry about your wife, and I know it must be terribly hard. I hope and pray that only good things will come in the future for both of you.

But I also hope you don't reply to anymore of my posts if you're going to play one stage of cancer against the other, because it's hard for everybody.

Joy1216 · August 2008

Another Stage 1 Survivor
I know how you feel. When I was diagnosed with stage 1 colon cancer two years ago after a screening colonoscopy, I felt like I had been hit by a train. My husband was a zombie until I got home from the hospital, then he was back to being his loving self. My family and church family tried to be loving and supportive, but at times I felt like "Calgon, take me away." A couple of months after my surgery, I became depressed when several of my eight lifelong friends couldn't understand that physically and psychologically, I wasn't the same person. I felt the same loneliness, confusion, and hurt that you talked about, but after a while I quit worrying about them and decided to become the person I wanted to be. I now spend a lot of time volunteering at my church and with church friends. For me, it took a lot of venting and time. You are strong and you are a survivor. You will find a way to get through this.
Joy

dixchi · August 2008

Bitter Feelings
Wow, this topic has turned into one of the longest ones it seems. Helps to know
that others have relationship problems during this time. I wrote a note to a
longtime friend who was upsetting me with her comments and behavior and got in
return a "goodbye, I don't wish to continue this relatioship" and no attempt
to work it out. In retrospect, the note was proabably too much but our friendship
had also deteriorated over time and she has a lot of personal problems, health and
financial as well so she has a problem seeing things from someone else's perspective.
It has hurt but it may be also emotionally freeing me up to find other friends rather
than just depending on her. I tend to have one or two friends and don't broaden
my support network enough. I want to put in a good word for the Wellness Community.
If you have one where one live please check it out. It is an organization that
offers programs and services to cancer patients and their caregivers for FREE.....
there are potluck lunches and dinners, programs on all sorts of topics, yoga and
tai chi classes, relaxation and guided imagery groups and so much more. Here is
the place to find friends who understand what having cancer is about and at the
same time learn and participate in healthy activities with others. I wish there was
a Wellness Community in every city in the country; it is such a great place!

dixchi · August 2008

Bitter Feelings
Just one more comment. My ex-friend made one of her lecturing remarks to me recently
and I said to myself, "that is not what I need.....what I need is a hug and some
encouraging words"......went to the relaxation and guided imagery group at the
Wellness Community last night (actually pushed myself to go) and there it was.....
the support, a hug and offers of prayers and thoughts as I start my chemo next week....
hooray for the Wellness Community!

mk1117 · August 2008

Bitter feelings
Gail -

Thank you for discussing a topic that obviously is on a lot of people's minds. Overall, I feel like I've been able to keep a decent handle on what's going on in my life (Stage 3 colon cancer - 13 of 17 lymph nodes positive), but sometimes I have to "go over to the dark side" for a bit. My 16 year old daughter (who was 12 at the time I was diagnosed), seems to have forgotten I was ever diagnosed with cancer. It's not that I want special treatment, but it would be nice if she wasn't so self-absorbed all the time. This may sound really petty - but I just cannot listen to the song by Tim McGraw "Live Like You Are Dying." She seems clueless as to why I want to change the channel when it comes on the radio in the car. Others in my life think everything should be back to normal, and that I should've moved on with my life. It seems no one really understands the anxiety and anxiousness that begins at least a month before each check-up with the oncologist. What I'm feeling now is almost like survivor's guilt. I feel guilty that others with similar diagnoses have not the same "luck" as I've had. Yes, I know that statement will probably make some people mad, but I'm just stating what I'm feeling - that's what these posts are for, right?

apache4 · August 2008

mk1117 said:
Bitter feelings
Gail -

Thank you for discussing a topic that obviously is on a lot of people's minds. Overall, I feel like I've been able to keep a decent handle on what's going on in my life (Stage 3 colon cancer - 13 of 17 lymph nodes positive), but sometimes I have to "go over to the dark side" for a bit. My 16 year old daughter (who was 12 at the time I was diagnosed), seems to have forgotten I was ever diagnosed with cancer. It's not that I want special treatment, but it would be nice if she wasn't so self-absorbed all the time. This may sound really petty - but I just cannot listen to the song by Tim McGraw "Live Like You Are Dying." She seems clueless as to why I want to change the channel when it comes on the radio in the car. Others in my life think everything should be back to normal, and that I should've moved on with my life. It seems no one really understands the anxiety and anxiousness that begins at least a month before each check-up with the oncologist. What I'm feeling now is almost like survivor's guilt. I feel guilty that others with similar diagnoses have not the same "luck" as I've had. Yes, I know that statement will probably make some people mad, but I'm just stating what I'm feeling - that's what these posts are for, right?

Interesting thread
I just read the entire thread. Very interesting experiences and comments. It is like a microcosom of life...all so different and yet similar.
I can relate on two levels. I had Stage I (might have been II) uterine cancer in 1999. The man I was living with went to bed for the night after the dr's phone call and I would have been left alone with the news if not for his 17 yr old son who hugged me and hung around to make sure I was OK. (Needless to say, I left this guy about six months later...another story) At that time, it never did sink in that I was or could be seriously ill. I had the surgery, did six weeks of radiation (while working) and generally poo-pooed the whole thing. The rest of my family were more concerned then me! It was appreciated at the time and in hindsight I did not give them credit for their love and concern.
This time around, with a Stage IV diagnosis, I am sure into how serious it is. The only one who had a strange reaction was my only sibling, my sister, who said "But, you're all I have" when I told her. I don't know where that puts her husband and daughter! Anyway, that reaction has bugged me even though she is so supportive and helps in many ways. Sometimes, things just pop out of people's mouths and they don't realize it.
I also must now acknowledge to myself, the lack of "cancer knowledge" I had before all of this. I had a dear friend who battled breast and ovarian cancer very bravely and when she told me that she had discontinued treatment, I know that I did not "get it" what that really meant. I also know that I have not given as supportive reactions to others who have announced a diagnosis in the past. It is so true that until you walk in the shoes it is difficult to have a "proper" reaction. I hope that makes sense.
Now, if I let someone know my situation I ask how much they kinow on the subject and if they are clueless I use my sense of humor and my own acceptance to kind of educate them. I wish I had been similarly educated so that I would not have seemed insensitive in the past.
This also works in other "touchy subject" situations. I have worked with sexual assault and domestic violence victims in the past and use my own unfortunate experiences to help promote awareness of these issues.
I hope some of this helps someone.
Hugs to all.

ccstinks · August 2008

tootsie1 said:
I'm really glad that I was
I'm really glad that I was out of town and didn't see your post until some very nice people had already told you that your remarks were rude. Yes, I know I was diagnosed Stage 1, and I know how lucky I was to have my cancer found before it got farther than that. If I'm lucky, the physical part is done for me. However, it COULD come back. The emotional part is what doesn't get removed as easily. You may or may not have read some of my other posts in which I referred to my husband's sudden cardiac arrest. We live every day with his heart problem and the fact that at any moment on any day he might have another rhythm disturbance from which they WON'T be able to bring him back. So I was already a bit stressed in my life before this.

Regardless, I am a praying Christian and usually very positive. If you knew me in my "real" life, I think you would see why I have lots of friends and am generally considered a good person. I just happened to be having a bad day that day and shared my feelings here, because I knew people would understand and help me. It's hard to talk about some things with people who haven't had cancer, because they just haven't experienced the same feelings.

I'm very sorry about your wife, and I know it must be terribly hard. I hope and pray that only good things will come in the future for both of you.

But I also hope you don't reply to anymore of my posts if you're going to play one stage of cancer against the other, because it's hard for everybody.

Tootsie,
Sorry to be rude.
Tootsie,

Sorry to be rude. It was not my intention. I just wanted you to savor the joy of the fact that it did get caught early and I am SURE your family loves you very much. I was not trying to pit stages against each other. I am sorry about your husbands condition. I am sure that makes you appreciate each day like I am trying to do while watching all the pain.

Forgive me.

tootsie1 · August 2008

ccstinks said:
Tootsie,
Sorry to be rude.
Tootsie,

Sorry to be rude. It was not my intention. I just wanted you to savor the joy of the fact that it did get caught early and I am SURE your family loves you very much. I was not trying to pit stages against each other. I am sorry about your husbands condition. I am sure that makes you appreciate each day like I am trying to do while watching all the pain.

Forgive me.

Forgiven
You're forgiven! Whew! I went to bed last night and wondered how I could erase what I had written, because I thought I had been too rude. Seems like the feelings have been flowing on all sides! *smiles*

Today's a good day for me. My youngest grandson started a toddler class at Montessori, and I spent the morning with him to help him get acclimated. How cute is it to spend time around a bunch of diaper-clad little precious people? Andrew was just 6 months old when I was diagnosed, and I'm very grateful to be here for the next stage of his young life.

Okay, let's all have a group hug and sing "Why Can't We Be Friends?" *winks and smiles*

Gail

DanK · August 2008

This has been a great
This has been a great discussion! I do believe it important to remember that this is just one of the many emotional and physical challenges each of of face as we go through this cancer journey. For each of us they are different. Things like stage, how our bodies handle the treatments, pathology results, etc. all impact our experience. For me, Gail's post hit a spot that had remained buried under all the other challenges that have taken a higher priority. Recognizing and supporting her in those feelings was important to me. Whether this issue is high on what has impacted me or not was less important. Although my cancer was an earlier stage than many, my resection surgery failed, an abscess resulted, and I nearly died from the resultant septic shock. I spent 34 days in the hospital. I had to go through 30 - 2 hour sessions of hyperbaric oxygen therapy to heal the abscess site, and spent a year with an ileostomy. The reversal has not been a stellar success. Since my 4th surgery last Monday, which is almost two years into my journey, I have encountered problems with internal bleeding at the original abscess site with few options to resolve if it doesn't clear on it's own. There are many days where I am just happy to be alive. But I also think it important for all of us to continually take the time to recognize emotional holes in our experience, however big or small they are for us, and not discount the feelings they bring to the surface.

Dan

wallyhc · August 2008

bitter feelings
Hi Gail
I am so glad you have been able to have the conversations with you son and Husband. I understand the reluctance with the daughter too. I know when I found about my cancer the firt time, everything went so fast. colonoscopy on friday, surgery on monday. zipe de do dah ! It was a shock to all. I have five kids and the reactions varied for all. My youngest daugter is a nurse, she was with me all the way as was my wife. My youngest son was in denual most of the time and my oldest son was devasted.. a Full range.

But Here was my philosphy. I realized if I was to get through this I had to keep a sense of humor, very important. Someone said: " I cannot always control the circumstances , but I can control how I react to circumstances" I din NOT want anybody to uncomfatable around me because I had cancer. I talked about it freely when people asked me about it, and if I felt they were uncomfortable I did not push it. but I chose to go on with my life , to play with my grandkids and dogs and cats as much as I could, I try to find humur in things when I can..

The fact that you have been able to sit down and talk to your husband and son Is a real Plus for you. Encourage them to keep engaged. It is so good .
I will be honest, I knopw that this places a great stress on my wife and I know this is hard for her.. We have been together for 48 years. If I try to be positive then it helps both of us.

Good luck to you

Cheers

wally

TY2HC · August 2008

WOW
Hello Gail/Everyone,
I am glad that you have had the opportunity to talk with you husband and family! It sounds like you have had to deal with a lot lately. How has your pain been by the way?

I am also glad that there was further discussion between you and ccstinks. When I read his comments it sort taken back for a moment. It brings up something that has been bugging me for 5 years now. I was diagnosed stage 1 5 years ago. Every Onc. appointment I go to I feel like I am in a place I don't belong. I don't feel like I have experienced "cancer", because to have cancer means you have to have chemo or radiation therapy. Understand this is my own feelings no one has made me feel this way. I have often felt it would be insulting to those of you that have had to endure so much to dwell on the fact that I was diagnosed with "only" stage 1 cancer. As irrational as it might sound. I do not mean to pick on ccstinks' comments but they sort of validate my feeling. Is this how others have felt that were diagnosed and did not have to have chemo or radiation? I do not mean to be disrespectful in any way and am not trying to pit one stage against another. I am just curious if I am alone in these feelings.

Thanks,
Chris

kimby · August 2008

TY2HC said:
WOW
Hello Gail/Everyone,
I am glad that you have had the opportunity to talk with you husband and family! It sounds like you have had to deal with a lot lately. How has your pain been by the way?

I am also glad that there was further discussion between you and ccstinks. When I read his comments it sort taken back for a moment. It brings up something that has been bugging me for 5 years now. I was diagnosed stage 1 5 years ago. Every Onc. appointment I go to I feel like I am in a place I don't belong. I don't feel like I have experienced "cancer", because to have cancer means you have to have chemo or radiation therapy. Understand this is my own feelings no one has made me feel this way. I have often felt it would be insulting to those of you that have had to endure so much to dwell on the fact that I was diagnosed with "only" stage 1 cancer. As irrational as it might sound. I do not mean to pick on ccstinks' comments but they sort of validate my feeling. Is this how others have felt that were diagnosed and did not have to have chemo or radiation? I do not mean to be disrespectful in any way and am not trying to pit one stage against another. I am just curious if I am alone in these feelings.

Thanks,
Chris

stages
I was diagnosed 5 1/2 yrs ago with stage II endometrial cancer. I had surgery (complete hystorectomy) and 5 rounds of internal radiation. My family was stunned and I spent quite a bit of time making them feel better. I, however, never felt like it 'counted' as cancer. Easily treated, radiation on my way to work (the only time I missed for work was surgery and I worked from home after 2 weeks - back full time after 4). I didn't tell people I had cancer, I didn't participate in the survivors dinner, etc with relay for life, I didn't feel like a 'survivor'.

I was diagnosed stage III cc 8/07 (surgery, chemo, etc.) and now mets to the liver and lungs. NOW I take my endometrial cancer seriously.

I think to be diagnosed with colon cancer at any stage is much different. More serious maybe. CC at a young age is more scary than my endometrial cancer was and I don't think the stage matters so much. I still have a (semi)colon. Removing the large intestine might slow things down but it wouldn't have prevented my mets. Colon cancer is complicated.

I'm not sure if this helps at all, as my experience is very different from yours. (You didnt have endometrial cancer did you? LOL) This journey is so personal and individual for each of us. Please remember that your cancer was VERY real. The need for follow up is VERY real. You are not a fraud. You're journey isn't less important.

I *hate* it when someone asks about my status and then underestimates their own problems. Suffering can't be compartmentalized in that way. My friend who still has permenant radiation damage to her lungs and heart, the friend who just got divorced, the neighbor who had triple bypass, my sister with ms...Mine isn't greater or lesser, it just is.

Bitter feelings

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