Why does no one Understand ?

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Culinarycfo
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Why does no one Understand ?

Postby Culinarycfo » Fri Jun 27, 2008 11:08 pm

I was diagnosed on July 13, 2007 and have since had 6 months of Chemo after surgery. I had Stage II colon cancer and it did not spread anywhere else. It did invade the colon wall hence the decision to have Chemo. I have had my first set of 3 month tests and they are fine and I have been told that I will be fine. I am a worrier by nature and cannot get pass this whole thing. I am so afraid day after day and really have no one to talk to. My husband says I am fine, They cut it out, you are cured....then will not talk any further - says I am a nut for thinking about it so much. I cannot talk to my children because they are frightened, but usually change the subject if I bring it up. My mom does the same thing and the people I work with act like I never had anything wrong.... I want to scream and tell tthe world how angry I am and just how scared to death I am. It is ever so hard to get through the days and stay strong for everyone else. Just had to say this to someone... Am I really crazy for being so scared ???? Thansk for listening and for having this site to vent on.
Diagnosed Stage IIB Colon Cancer Friday, July 13, 2007
Colon Surgery August 10, 2007
12 Chemo - 5FU/Leucovorin/Oxaliplatin
No mets / 21 Lymph Nodes Clear

vancouver eve
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Re: Why does no one Understand ?

Postby vancouver eve » Fri Jun 27, 2008 11:42 pm

It is the case that no one understands the stress one is put under when dx. with cancer. It is always in the back of your mind.
Lots of people can't deal with the cancer you had so maybe a counsellor could help you vent. I believe you can probably get one at the cancer center.
Remember your feelings are normal.

; girl
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Location: Los Angeles

Re: Why does no one Understand ?

Postby ; girl » Fri Jun 27, 2008 11:49 pm

I'm stage ll as well and at first I thought , 'I'm glad it's gone'. I'm getting chemo too and as the days go by I seem to worry more about it coming back. You're not crazy for being scared, I'm pretty sure that everyone here feels the same way.

I don't dare get real around my mom or she will start yelling at me. I'm never allowed to express myself around her and now this, cancer, the scariest thing a person can go through. I could go on and on about my family but I won't as I'm very disappointed with them.

Anyhow...... Welcome. I'm new to this board as well and feel free to vent here anytime.
Stage 2b colon cancer
Surgery 3/26/08
Pronounced NED 11-28-08

patrickscribe
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Location: Cleveland, OH

Re: Why does no one Understand ?

Postby patrickscribe » Fri Jun 27, 2008 11:58 pm

Hi. My medical situation is similar to yours...I was diagnosed just a few months before you.

After chemo, the odds say there's a 90% chance we're cancer-free. That means a 10% chance it comes back. Everybody says to stay positive but there is a real chance we're dead or dying in 5 years. So yes, you're right worrying.

I'm struggling with how to respect that 10% and give it the proper weight as I plan the rest of my life. It is very easy to let that 10% dominate my thinking, so it's something I'm sorting out and working on.

I also learned this spring that your continuing testing will likely raise small issues that require tests to just be sure. I had one of those issues this spring and it ate at me big time. I'm OK and still NED but boy did it scare me. It really put me on edge for a month and I was pretty depressed. So I also have to learn how to give these little things that I'm sure will come up again the right attention without letting the worry take over.

We're probably fine. Nine out of 10 in our situation don't have cancer - they HAD it. But yes, it hangs over our heads.
Age 38, diagnosed and had right hemi-colectomy in March 2007
Stage 2A, no mets, 27 lymph nodes clear
Completed 8 doses 5FU/Leucovorin/oxaliplatin, 4 5-FU/leucovorin
NED!

weisssoccermom
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Re: Why does no one Understand ?

Postby weisssoccermom » Sat Jun 28, 2008 1:06 am

It's only natural for you to be scared and worry about it. When you were diagnosed, you were hit with something like a ton of bricks - a diganosis that isn't just cured with a pill or let to run its course like a cold. When you had surgery, you felt as though you were doing something to attack this intruder and when you were undergoing chemo, you realistically knew that no matter how yucky the treatments were , they were doing a very specific job - killing any stray cancer cells. The fact is, though, that when you are out of treatment it's YOU against the cancer and FEAR creeps in through every nook and cranny that's open. Surgery, radiation and chemo are crutches and we rely on them but once they are done, well, it's hard to let go and to not let our imagination and our worry center take over. If I am figuring correctly, you are probably out of chemo now for about 4 months or less?? You're scared because there's no more treatments, no more crutches to hang onto and you're worried that the cancer will come back. Well, yeah, it MIGHTcome back, but then again, it MIGHT NOT! You'll go through these doubts, these worry times from time to time but hopefully you'll notice that as each day passes and the further away from treatment you get that those worry days become less and less frequent. When you really think about it, you're missing out on a whole lot of quality time that you're spending worrying about something that has a low probability of happening.

As for other people, well that's hard. My own son (age 25) totally surprised me the other day. I was getting pestered about his upcoming wedding - could I meet with her parent's this weekend, how about this one, etc. and I was about to go beserk. My three month appt week (I schedule everything for the same week - onc, blood work, CT (if needed), surgeon and get it over with in one fell swoop) was coming up and I had just had it! I told my son about this and this very intelligent, college educated engineer was just astounded that I wasn't 'cured'. He assumed that since the surgery was a success - well what was I worrying about??? Here all along I had thought that he was rather insensitive and now I find out he was just ignorant. I spent so much time trying to shield my kids (now 27, 25, 23 & 17) from the day to day aspects of this disease that I guess I did them a disservice because they were totally out of touch. My hubby didn't and still doesn't know how to deal with it-mainly because I think it frightens him. Just this past week, I had to have an endorectal ultrasound because on my last visit the surgeon felt something. Turns out it was just scar tissue but I was still scared prior to the test thinking about all the 'what ifs'. You have to remember that every person reacts differently to the whole cancer journey. Most people who aren't going through it or haven't gone through something like this have a difficult time truly understanding what it is like.

You aren't crazy for being so scared, but you are letting life pass you by right now. It's easy for me to type this and tell you to try and relax a little. Tell me, is worrying going to change anything? Is worrying going to make it less likely for the cancer to come back or not to?? Is worrying and getting all freaked out about everything doing you any good - physically or emotionally??? NO, NO and NO. As you get further and further away from treatment you will find that you think about the what ifs less and less and start to enjoy life more and more. My best advice is try to take this one step at a time. Now that the weather is nice, try and focus on spending a morning or afternoon doing something that you really like - maybe something with your kids or maybe just something that you like to do and try to not think about treatments, your surgery, recurrence - nothing about cancer, even if only for a few hours. Try doing that each day and extending the time for 15 mintues or so each day and before you know it, you will find that you have spent an entire day just enjoying your life and having a good time. You may find that by trying to establish a 'normal' life again that you can find the quiet time at the end of day to talk with your husband or someone about your fears. You don't have to be strong for everyone else - just yourself right now. Those fears are always lurking and frankly, sometimes we want them to be - if for no other reason than to make sure we don't get too complacent about our health down the road. Don't be angry that you had cancer (notice I used the word HAD not HAVE). There's absolutely nothing that you did or didn't do that made you get cancer - it just happened. And yes, it sucks, but you can't go and turn the clock back. Don't spend your time letting anger rule how you live. Most importantly, do NOT let fear take hold of your life. Remember after 9/11 how so many people were afraid to go out and live - afraid to travel??? The terrorists used FEAR to rule our lives and almost won but we didn't let them. Don't let cancer be the terrorist and rule your life. Kick it in its butt and you conquer it! And when you have doubts or fears then you post here where you have friends who know how you feel because we have been there.

You take care and just know that everything you're feeling is totally normal and will pass if you will allow it to. You CAN get through this because you are STRONG and a SURVIVOR!

Jaynee
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

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Gaelen
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Re: Why does no one Understand ?

Postby Gaelen » Sat Jun 28, 2008 4:12 am

I agree with Eve, who suggested looking into getting a counselor to help you process what you're feeling. Everything that you describe (anger, fear, uncertainity) is completely normal. Since more people are surviving cancer for longer, researchers are now devoting more time to studying emotional after-effects of cancer. There's an on-going study isolating the aspects of post-traumatic stress disorder thqt have been observed in survivors--and it's about time.

I'm not really sure why we expect family and friends to help make us feel better in the NED/post-cancer world. To be fair, most of them either had their own emotional issues about our disease or we tried to minimize their exposure to what we were going through, so they didn't really understand it even when it was happening. Sure, we can expect them to be supportive (although that doesn't always work out), but we as patients can and do have big emotional issues in this dance with cancer. Talking to a professional counselor, or even a face to face support group, can be an amazing help in staying centered.

Most oncology practices have social workers/counselors on staff, or can put you in touch with counselors and/or patient/recovery support groups. But even if you don't want to go to your oncologist, your primary care doctor can refer you to the counselor of your choice, and your insurance probably covers it. If you can't talk to family and friends, and frankly, even if you can, having a professional counselor on board and in your corner can be a huge help at staying focused on living your life to the fullest.
Be in harmony with your expectations. - Life Out Loud
4/04: dx'd @48 StageIV RectalCA w/9 liver mets. 8 chemos, 4 surgeries, last remission 34 mos.
2/11 recurrence R lung, spinal bone mets - chemo, RFA lung mets
4/12 stopped treatment

babbo
Posts: 36
Joined: Fri Jun 08, 2007 11:12 am
Location: Ohio

Re: Why does no one Understand ?

Postby babbo » Sat Jun 28, 2008 8:51 am

Hi there:)

Just a line to let you know I understand too clearly what you are feeling...It is normal...

Remember until you have walked in someone's shoes, you don't know what they are going through...

I will be thinking of you...And sending good, happy, positive vibes your way...

Take care...Enjoy each day to the fullest...

YOU ARE A SURVIVOR!!

God bless...

Barbara :-)
Age 61..dx with RCC December 2005
Recurrence initial site mid 2006~Temp Colostomy
Mets to liver (3) Feb 2007
Successful resection Easter 2007..
Undergoing 12 mo~Folfiri w/Avastin
Progressed~3 Mets Lungs
Liver looks good so far
Doubled my chemo dosage 7/08

Culinarycfo
Posts: 3
Joined: Fri Jun 27, 2008 10:52 pm
Location: Florida

Re: Why does no one Understand ?

Postby Culinarycfo » Sat Jun 28, 2008 11:18 am

Thank you to all of you, your replies really helped....
Diagnosed Stage IIB Colon Cancer Friday, July 13, 2007
Colon Surgery August 10, 2007
12 Chemo - 5FU/Leucovorin/Oxaliplatin
No mets / 21 Lymph Nodes Clear

NWgirl
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Location: Battle Ground, Washington

Re: Why does no one Understand ?

Postby NWgirl » Sat Jun 28, 2008 5:45 pm

Just one more "don't worry - I get it" response. Just today someone said - "but you're fine now aren't you?" - well, no, I was stage 3 with 27 nodes affected. Just because they took out the tumor doesn't mean it isn't elsewhere in my body - in fact my oncologist assumes it is but just hasn't shown up on a scan yet and is taking a very aggressive chemo approach with me. And I'm not even done with chemo!! And even at stage 2, you still have every reason and right to be scared it will come back - we're all scared.

What has helped me is to find a few very good friends I can confide in and be open about my thoughts and fears. If you don't have someone close to you now that you can talk to, please find a support group or a counselor to help you through this. Sometimes you just need to talk about what really scares you, cry and know that the person you are talking to isn't judging you for how you feel or what you are thinking. You can find dozens of us here on this forum, but it helps even more if there's someone there to give you a hug and wipe away your tears.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

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justsing
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Re: Why does no one Understand ?

Postby justsing » Sat Jun 28, 2008 6:19 pm

My problem with people "getting it" is that I want to have it both ways.

I want to go on with my life as normally as possible and not have to deal with the constant "so how are you doing, REALLY?" conversations. And at the same time, I want people to understand that in spite of my can-do attitude, I'm going through life with an enormous emotional Albatross around my neck.

But if I don't talk about it, I can't expect everyone to "get it." And if I do talk about it, I spend a lot of time in an emotional swamp. It's a quandary!!!!!

The most important thing for me is that I have one or two friends with whom I can fall apart -- BRIEFLY -- and then be allowed to immediately return to normal without having to "process" anything. They never press me to "share" but are there when I need them. They are worth their weight in gold.
justsing, 46
Stage IV
colon resection 12/07
Liver resection 04/08
Phase I vaccine trial
liver, lung LN mets
tried Oxi, Iri and Avastin
now trying new chemo combos then sir spheres
College prof in theatre & voice
2 girls 18 & 14, one son 10

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mnw28
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Location: Mississippi

Re: Why does no one Understand ?

Postby mnw28 » Sat Jun 28, 2008 6:49 pm

I completely understand. I find myself questioning my sanity because one day I'm aggrivated because people keep asking me "how are you feeling" but don't seem to really want to know the answer or they don't ask at all..which irritates me just as much depending on the situation. No win situation. I keep telling myself that people who haven't gone through it don't know what to say and the fact that they care enough to be concerned should be enough. But some days I just want to scream! For some reason I am bothered the most when people say "Well you look GREAT." I don't know why that bothers me so much but it does. I think my closest friends understand that I will talk about it when I want and they will be there to listen. They call and check on me, but if I don't return their call they understand. No one however, except cancer survivors understand the fear that keeps us up at night. I think we all know how quickly those morbid thoughts can enter our minds.

Today is one of those days for me. I'm just really very depressed, sad, and discouraged. It seems like during each round of chemo, by Saturday (I start on wednesdays) I'm just really down in the dumps. I usually spend an hour crying to my mom on the phone and then somehow I wake up on Sunday feeling a little better and emotionally stable. Weekends can be so long when you feel so bad. I swear it feels like the minutes are going in reverse. It sucks being young with cancer. I feel so left out and so alone sometimes.
Age 29
Diagnosed Stage II Colon Cancer 03/27/08
Resection Surgery 04/03/08
Folfox Treatment 05/14/08 to 08/20/08
Completed 7 rounds
Miss January 2011 Colondar Model
https://www.caringbridge.org/visit/mistynwatson

Molly
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Re: Why does no one Understand ?

Postby Molly » Sun Jun 29, 2008 8:54 am

Culinarycfo,

Until someone has stood on the edge and almost fallen, they will never truly understand what it's like to have a life threatening illness. Survivorship is a wonderful thing...but can also very scary. You are COMPLETELY normal for feeling this way.

You have come to the right place.

:)

From one stage II to another...

xo,
molly

dx 2/19/99...my 23rd birthday
Stage II B

tcolitti
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Facebook Username: Todd Colitti Sr.
Location: Thomaston, Ct

Re: Why does no one Understand ?

Postby tcolitti » Tue Jul 01, 2008 12:11 pm

Culinarycfo,

Try not to dwell on the statistical end too much, but if you do remember that stas don't tell the whole story, - there are a lot of variables you may not think of. Your thinking is not any different than most of us here, try to find a way to block it out and be as positive as you possibly can. Just remember you could walk off the side walk and be killed by a car! odds are you won't - but do you want to dwell on that possibility too?

Good luck, and good health

Todd
Never give up HOPE and Always BELIEVE!
DX Age 35 1999
Stage IV CC with mets to liver (4lesions)
Colon & Liver resection (both lobes), removed appendix and gall bladder
5fu/leucovorin
2009 COLONDAR Model


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