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Bitter feelings

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

This might turn out to be a long post. I'll try to be as brief and as pleasant as possible, but I'm having some rather dark feelings right now.

My cancer diagnosis happened so very quickly, and I was immediately drugged up so much, that I didn't really have time to process all my cancer feelings until recently (I was diagnosed last November).

Now that the dust is clearing somewhat, I'm able to sit back and think, "What the heck? Well, that was just unpleasant and scary." And in thinking back on the diagnosis, it came to me how disappointed I am with the reaction of my family at that time (speaking of my husband and two chldren). I suddenly realized one day a couple of weeks ago that not one of them cried while I was in the hospital and told me they were scared for me or worried, or even glad when it was done that things are looking good. They gave me good care, but there was none of the type of gut reaction I might have expected.

I've asked them all what went through their minds and why they didn't express the worry to me. Here's what they said:

My husband: He was trying to be strong for me and cried when he was at home alone. Big whoop-how was I supposed to know he was sad if he was all Mr. Sunshine around me?

My daughter: It all happened so fast nobody had time to get worried. Huh? A loved one gets cancer, and you need time to get worried? How about in the first second you see that look in the doctor's eyes?

My son: He's a radioloy tech getting ready to specialize in radiation oncology. He did have the grace to blink back a couple of tears, but pulled himself together very quickly. He said with his "insider information" he knew I was going to be okay when I told him the full diagnosis. I told him he needs to study more abour colon cancer. It's true it can be cured if caught early, like mine was, but it's still a major killer. And, HELLO, I don't care what you know, if you LOVE the patient, doesn't all that stuff go out the window? Don't I get to just be your mom and not a patient?

Since I've told them this, I've also been quite disappointed that not one of them has said, "Oh, my God. I didn't mean to make you feel like I didn't care. I was (and am) very worried about you. I love you more than anything." Any words to that effect would do.

I thought we'd always been a very close family, but right now I feel like running away from home and just being by myself. Might as well, because I feel really lonely with all my confusion and hurt, anyway.

If anybody feels they need to reply and reassure me that people deal with these things in different ways, blah, blah, blah, PLEASE DON'T! I really, truly couldn't take it right now.

Gail

Monicaemilia's picture
Monicaemilia
Posts: 455
Joined: Nov 2006

Hi Gail: It sounds to me that what you are feeling is pretty normal. I had a similar experience when my bowel perforated, my bsby was born c-section, and I was given a 50-50 chance of survival. After the dust settled, I was laying in my hospital bed at 5:00 a.m. when it suddenly occurred to me "what the #?$% just happened here?" and I started crying like I never cried before. My surgeon walked in to check in on me, saw me crying, and made a bee line out of the room. I started laughing hysterically because it was such a typical "man" thing to do. One thing I can tell you for sure, I am battling Stage IV and every time I turn around there is a new challenge, but my family has rarely broken down in front of me, and I, personally, really appreciate it. I sometimes have a hard time keeping it together myself. My mom goes around smiling and telling me things are going to be okay, and my husband likewise. I do have a friend who has gone through the cancer battle, and she is the one that I tend to unload off my more realistic fears, concerns, etc. This board has also been heaven-sent in that I have been able to express what I cannot to my friends and family.

I guess what I am trying to say is that I believe that although what you are feeling is totally understandable, it is more a reflection of the scare and after effects of treatment than the devotion of your family. Since my diagnosis a lot of people around seem to also be getting diagnosed with cancer, and I hear from family members that they are having a hard time knowing exactly what to do or say. Cancer is hard on everyone, and sometimes, I know that I get so caught up in my own fear and misery that I lose sight of what is happening on the other side. Keep talking, find a support group, and most of all, definitely vent on us. We understand what you are going through. Wishing you the best, Monica

impactzone's picture
impactzone
Posts: 531
Joined: Aug 2006

I'm sorry and I understand your feelings. Often it is like people who have gone to war together. Only they really understand the bond. Cancer seems to be like that where you get that thousand yard stare and you have changed while life goes on. Only from my perspective, most people, even loved ones, do not know how to deal with and act around people with cancer..it is awkward and they honestly don't want to make you feel worse. I just tell them no rain,,,no rainbow... It seems as if it is so ingrained even on sites like this that a positive attitude is critical to success. (Which it is).Perhaps we need to look at ourselves as well.. Oh well...sorry but please welcome back to life
Impactzone
stage4

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

I think we have all been where you are, Gail. The WTF comes when the numbness wears off, it just does. Your loved ones don't want to face their own mortality, much less yours. Their reaction was what it was and i doubt that even they understand it. I would imagine your anger and bitterness is more a stage of your adjustment to your diagnosis than it is a reflection of their love and concern (or the lack thereof as you feel now) for you. Continue talking about it with them, it will help you as well as them. I know my children try to be strong for me, but i know them well enough to see their concern (like when they freak when i don't answer the telephone!). Whenever i have a new symptom i try to let them see when the symptom goes away so they can have definite proof to use in the darkest of night when they worry the most. Keep tough and there will be better days ahead. This is a great place to get those feelings out because as i said before, been there done that, hate to see others suffer in silence.
Mary

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

Sprinkle in a bit of 'WHY ME' (remember, I faced the beast 2 times in 19 months), and you have me pegged in your post.

Now, 2 years after treatment on the breast cancer, I realize that cancer is a solitary journey...no one understands/can relate completely. Not even other survivors, although our advantage is we have taken that journey before you, and can offer guidance and sympathy.

Nuff said.

Hugs, Kathi

jams67's picture
jams67
Posts: 927
Joined: May 2006

I remember feeling the same way. I wanted a closer relationship with my husband. More hugs and instead he went on with life. I made sure when he had cancer this spring that I was there in a way that maybe he couldn't be for me. We all try to be positive, but cancer sucks.
I'm glad that I could rely on prayer when I was at my lowest.
Jo Ann

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kmygil
Posts: 881
Joined: Feb 2007

Hah! Gail, when I was in the hospital recouperating from my 2nd abdominal cancer surgery last year, my husband called my room one night and here is what he said. "I know it's going to come back, and you're going to be dead within 2 years. What am I going to do without you? (the "poor me" implied)." After I cried at his complete unfeelingness and the fact that my disease seemed to be all about HIM, then I started laughing. I have a lot of fun with it to this day. For instance, when he asks me if we need to do so-and-so for next year, I just answer, "It's up to you, Baby. Remember, I'll be dead!" OK. It's childish, but it sure makes me feel better.... I think the people around us have a harder time. We are occupied with the battle, but they can only do so much and spend the rest of the time wringing their hands and imagining the worst. So forgive. I forgave, but I still use the "Huh? I don't know. I'll be dead." line. LOL!!!
Kirsten

cjf2006
Posts: 84
Joined: Dec 2007

I was disappointed with my two sons' reaction to my cancer. They both said, in their own way, "you'll be fine Mom". That was it. Neither of them has ever been the type to open up about what's inside. I got more tears from a deacon at my church whom I hardly knew (I suspect he has had a past experience that caused him to react openly). Over the years, I have realized that it is not because my sons don't care. I have gotten over my disappointment. And I realize that only those who go through the fire understand the struggle. Just don't hold on to bitterness. It will only hurt you more. Forgive them and find someone you can talk to who understands. You're not alone. Many in this forum can relate to what you are experiencing.

brn2ride's picture
brn2ride
Posts: 32
Joined: Dec 2007

it would seem you need to get serenity in your life if for nothing more than your continued good health and recovery. don't ya suppose most people do the best that they can even if it isn't exactly what someone else thinks is the best they can do
best wishes

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Just so you know, I'm NOT bitter all the time. Most people find me amazingly okay with what's happened. I think I'm allowed to be down once in awhile. And I thought this was a good place to vent More power to you, brn2ride, if you can be positive all the time.

nowonderwoman
Posts: 8
Joined: Jul 2008

I am glad that I am not the only one with bitter feelings. My mother stormed out of my hospital room right after after my resection because she was not the center of attention. She later told me that she had posted prayer requests on the chat line she goes to and I had people all over the country praying for me. This after she never listened to me and knew very little about my condition. I felt like she was using my illness to get attention for herself. She has not supported me at all in the 18 months I have been battling cancer. I have really been scarred by this but I hope that it will make me more sensitive to others who are going through the same. Thanks for letting me vent.

TY2HC's picture
TY2HC
Posts: 49
Joined: Mar 2008

I think we have all had our life goes on moments and you are just a part of it. When I was in the hospital after surgery, my wife, whom I love very much, had our 1 1/2 year old at home and was teaching all day. Needless to say my cancer sort of got in the way of our lives. Anyway, we were refinancing our house during that time, so I was on the phone with the mortgage company from my hospital bed because that is part of my role in our lives. In fact, she would yell at me about the whole thing while I was there.

When I got home she told me that she didn't get a vacation, during one of our discussions. I remember at the time I was like WTF is going on. Do you really think I took a CANCER vacation from our lives? But I took a step back and looked at is her response due to the stress of the situation and the answer was yes. I tried not to make a big deal about the what ifs and to be strong and in turn so did she. Maybe that was the wrong approach because I didn't give her the chance to feel and deal with the situation. If you can't tell my wife does not deal with stress well, and this was the biggest stress we could have in our lives.

Gail, what you are feeling is what you are feeling for right now. You haven't had time to process what has happened because of all of your health concerns. You need to be able to deal with it before your family can. I believe our families/friends try to take cues from us. You get to be angry about the cancer, you get to have the feel sorry for myself moments. This is about you right now. If you would like to vent this is the best place to do it. I hope things get better for you soon and I am here for you.

Chris

pamness
Posts: 513
Joined: Nov 2007

Gail - if I remember correctly, you were diagnosed stage I. I wish that had been my diagnoses. I was Stage IIIA, not so horrible, but worse than yours. However, all that aside, I understand how you feel. My whole family rallied around and my relationship with my husband is better than ever before.

Just the word cancer is so scary that I think it is hard for many to deal with. Perhaps your family took comfort in the fact you diagnoses was the best it could be (cancer wise). Have you thought about seeing a therapist to deal with your feelings? I have been ned for a year, and I notice a difference in concern. My husband just asked what I was responding to, and I told him, his response was "life has to return to normal at some point." What I am trying to say is unless you have been here you haven't done that.

I totally understand.

Pam

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Thanks, guys! My son got home from a trip tonight, and we ended up having a good talk. I had a pretty good one with my husband, as well. My daughter is the tough nut to crack, because she does NOT like to show her feelings. All I'm looking for is a statement like, "I'm so glad you're okay. Life wouldn't be the same without you." Oh, well. Sounds like a lot of you have had some odd reactions from people as well. I don't think I've ever reacted like that to anyone before my diagnosis, and I sure hope I won't in the future. I took a long walk tonight and cleared my head a bit.

As I told my son tonight, I grew up in an era when cancer was an automatic death sentence, and people were stunned at a cancer diagnosis, so maybe it's a little different for me than my children. Progress has been made, thank goodness!

*hugs* to all of you!

Gail

Limey's picture
Limey
Posts: 447
Joined: Mar 2004

Gail, I am glad you are communicating with your family. when i was first dx. My daughter was 17. If I remember correctly, her reaction was hi, get better soon, who is cooking for us when your in hospital. then we moved into the can I still go to so and so's next week? bit unnerving for me.

today, she is great. Caring, loving and wants to help out. She was trying to deal with the whole package of my daddy is going to die and i can't let him know I am sad.

I find if I focus on the good in my day, the good in my day becomes my focus.
I wish you happiness today.
Mark

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

Mark, my youngest daughter was 17 as well when i was first diagnosed. On top of that, i had just separated from my husband and we were struggling to make house payments while we waited for our home to sell. She had always been a bit spoiled and had been acting up since her father left. But once i was diagnosed, she really stepped up to the plate. My mother was still alive then and was able to come and help care for me, but my daughter did a wonderful job of helping as well. A bad way to grow up, but i am thankful for her maturity in all of it. In fact, when i had the recurrence and both my children came to care for me (my mother passed while i was recovering), they had arguments because my youngest daughter felt she had taken care of me the first time and could darn well do it again! We worked everything out, but it was good to see that the beast had brought us all together rather than pulling us apart.
Mary

dn220's picture
dn220
Posts: 79
Joined: Sep 2007

Gail, i know esactly how you feel. But only one of my kids has done that. He was in Iraq when I found out I had colorectal cancer but he was not the first time when I found out I had kidney cancer. He never came to see me in the hospital and rarely called. Well that was a year ago this july, then when i got the diagnosis of colon cancer last nov, he was in iraq. I had surgery in march, he got home in April, came to see me for about 2 hours, then I have not seen him since, until this weekend! He lives about 2 hours away but to me, that shouldnt matter. I have cried more over him than anything else so believe me, I know what u mean. Its definitely tough to deal with.
Deb

Moesimo's picture
Moesimo
Posts: 1080
Joined: Aug 2003

This whole cancer thing is tough on everyone. I was lucky because my husband, children and family rallied around me. Both of my husbands parents died from cancer. As a nurse I see how sick everyone gets from treatment. My world was turned upside down.

I am sorry that you are having such a tough time right now.

Maureen

JMARIE66
Posts: 56
Joined: Mar 2008

Gail
I read your post with much interest. My husband was diagnosed w/cc 11/07~stage3b. I remember the doctor saying to keep a positive attitude, so he probably thought I was unsympathetic walking @ like Mary Poppins. Then, when I did ask what was wrong...I would get a reply like, "I have frickin cancer, what do you think is wrong." We have 3 kids and tried to make life at this time as usual as normal. I was trying to not make the cancer the center of our life and keep our usuall schedule as to not revolve everything aound it. Now, don't get me wrong, I took care of everything @the house, with the kids, meals, yard work, and warming his car in the am for him. I wanted him to just focus on getting better. I am going to talk with him and make sure that he is not hurt by our/my actions. It was hard on me too-more emotionally. I cried allot when by myself and prayed and found myself here on this message board. I did not want him to see that side though as I wanted to be strong for him. I am not making excuses for others, but I can tell you~sometimes you don't know what to say and do. I am sure in your families own way, they are all hurt and concerned~sometimes we all just don't know how to show it without breaking down.

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Your husband was diagnosed the same month I was. Happy Thanksgiving and Merry Christmas, too! I'm sure it was hard on you. I think it would be nice for you to talk to him now, though, just to be sure he knows that you were being strong, but that you're AWFULLY glad he's still around.
*hugs*

dixchi's picture
dixchi
Posts: 438
Joined: Jun 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's picture
DanK
Posts: 4
Joined: Mar 2008

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's picture
msccolon
Posts: 1956
Joined: Oct 2004

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

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ccstinks
Posts: 2
Joined: Aug 2008

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.

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tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

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.

ccstinks
Posts: 2
Joined: Aug 2008

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's picture
tootsie1
Posts: 5056
Joined: Feb 2008

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

spongebob's picture
spongebob
Posts: 2599
Joined: Apr 2003

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's picture
2bhealed
Posts: 2085
Joined: Dec 2001

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

Joy1216's picture
Joy1216
Posts: 293
Joined: Mar 2006

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's picture
dixchi
Posts: 438
Joined: Jun 2008

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's picture
dixchi
Posts: 438
Joined: Jun 2008

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's picture
mk1117
Posts: 44
Joined: Jun 2006

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's picture
apache4
Posts: 272
Joined: Jul 2007

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.

DanK's picture
DanK
Posts: 4
Joined: Mar 2008

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's picture
wallyhc
Posts: 6
Joined: Aug 2008

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's picture
TY2HC
Posts: 49
Joined: Mar 2008

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's picture
kimby
Posts: 804
Joined: Oct 2007

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.

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Hey, Chris.

The pain is still there, and I don't know what's going to happen. All the tests come back good, so I suppose it's just a very irritable bowel. VERY! For the moment I'm in a much better place emotionally. I think just getting those feelings out with my family helped tremendously.

I know exactly what you mean about being diagnosed Stage 1 and feeling like you haven't really "had" cancer. I feel sort of embarrassed sometimes to admit to people that I didn't have chemo or radiation. Stupid, huh? But I do know that it felt like an awfully big deal when I woke up from the surgery that took 2 ft. of my colon, and I still can't say that I feel like myself totally. I'm out there living life and doing everything, but I still feel awfully tired and like my energy level is not what it once was. I also cried like a baby the first time I went to the oncologist's office. That was just a place I had never expected to be in my life.

I think that no matter what stage our cancer was, we have to remind ourselves that cancer is a life threatening event, and that it takes a toll on you. I feel like it put an imprint on me, and while I won't always feel as tired and scared as I sometimes do now, I will never be the same person I was before. For that reason alone, even a Stage 1 diagnosis is a big deal.

Thanks, Chris, for being the wonderful person that you are.

Gail

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

Weird what cancer brings into our lives, huh? I have a similar situation in my family. I am the 2nd to the youngest in a family of 6 children (43 at diagnosis stage IIIB). I had resection, chemo, recurrence and surgery 2 years later, more chemo and then more chemo. It hasn't been pleasant, but hey, I am still here! My father was diagnosed with bladder cancer in 2000, has BCG treatments off and on, doing well. Then he was diagnosed with prostate cancer, had the seeding done. Last year he was diagnosed with stomach cancer and now was finally having to undergo chemotherapy, and using drugs similar to the ones I have had, but delivered in a different method. You know, there are actually members of my family that were glad he "finally" had to undergo chemo so he could "know what Mary was going through". I was appalled! I hated to find out he had to take some of the drugs I had taken and had a hard time with; he's 26 years older than I am! Luckily, he had an easier time of it since he got lower doses, although he did have continuous chemo so he never got a break from the pump for a month. I hope to never be so bitter that I wish what i have experienced on ANYBODY else, least of whom are fellow survivors! For all of you "just" stage I's, know that there is no need for guilt! I for one, and certainly not the only one, am glad you don't have to deal with chemo and/or radiation and hope that your fight will continue to not require it! Enjoy every day and I pray for continued health for us all at ALL stages of this beast! Mary

apache4's picture
apache4
Posts: 272
Joined: Jul 2007

You are correct...any stage cancer is a big deal. I wish that I had taken my first experience more seriously. Just maybe, I would have insisted on follow-up for it and not be in the situation I am in today. That is one thing I would advise anyone with an early cancer...make sure you have follow-up! I don't know why none of my doctors suggested it. I had annual exams every year and that first cancer was always listed. Oh, well...

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