What people say

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Lydia666
Posts: 676
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

What people say

Postby Lydia666 » Sun Mar 27, 2016 10:39 pm

I'm getting really annoyed by what people say to me when i talk about cancer, mortality etc. Either i am becoming very touchy about it , or they really don't know what to say so they say bullshit. So i tested positive for a mutation that explains the two cancers i had and makes me prone to others. What do i get as comments from people close to me? Oh, we probably all have stuff like that if we got tested! And : do u now just wait for something bad to happen, that's not living.
Am i crazy or is this really discounting how i might feel and my situation?
Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
August 2016- DCIS and decided post prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Dec 20 - 2 round of folfox
Mom to 4 & 7 yrs kids - at least i brought them to this level of independence.

User avatar
CRguy
Posts: 10245
Joined: Sun Feb 10, 2008 6:00 pm

Re: What people say

Postby CRguy » Sun Mar 27, 2016 11:38 pm

FEEL ya' sista'
Rants and Vents ARE necessary on this forum and on this Journey = WORD !

SADLY .... most peeps don't know shit from shinola !
Mouth is OPEN in overdrive .... BUTT brain is in NEUTRAL !!!!
" So exactly WHERE is your own life experience with a life or death diagnosis Einstein ???? "
" Sorry... I see they left the gate open at the stupid farm again !!! "
" @$&K off until you find your ^%$%#ing BRAIN "
Ummm.. Ok maybe these are my Go To's on certain occasions :twisted:

OR ..... :shock:
you and WE can just kind of accept that those NOT in the know
really .... DON'T KNOW SHIT,
givem' a pass and concentrate on the friends who DO KNOW SHIT from shinola ????

All depends on who YOU need to be right now with your own life and info ........
the rest .. will fall into place when YOU decide who and what is important to YOU

WHAT YOU NEED = WORD !!!!!!!!!!!!!

what others "send" you ............ yeah duh !!! whatever

Harmony sista'
Keep kickin' it harsh Ole SKULE !!!!

CR on the Journey witcha' :mrgreen:
Caregiver x 4
Stage IV A rectal cancer/lung met
13 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Soccermom2boys
Posts: 218
Joined: Tue Nov 10, 2015 10:29 pm

Re: What people say

Postby Soccermom2boys » Mon Mar 28, 2016 1:11 am

Ugh, sorry to hear that you not only have to deal with your gene mutation, but also people who just don't realize what they say can be so insensitive. At least you can always come on here and we will totally get your frustration and have no problems listening to you or anyone else let off some steam and share your thoughts. Your feelings seem about right on par for where they should be given your situation. In my opinion, we should never have to justify our feelings as we figure out our new path that life has thrown at us (sadly that is not always able to be understood by our family and friends, but doesn't mean we can't want it).

I must say that whole mentality of "no one is promised tomorrow, I could get hit by a bus, blah blah blah" just makes me want to say well thanks, now I have twice the amount of uncertainty--if I don't get hit by a bus then I always have cancer for my back up anxiety attack, thanks for reminding me of that!

We do go on to live our lives, just not quite the way we hoped or planned to before cancer intervened. Was just having a heart to heart talk with my dad tonight and try as they might, those without cancer just can't understand our new reality. I kept trying to assure him that I am living my life, but hell yeah there are some rough days and eventually I can get back to a closer version of my old self but just not able to see it while I am still stuck in the suck (aka chemo).

Again, I feel you on how hard it can be to interact with people who just don't get it and don't realize they don't get it so therefore proceed to say stuff that to you is insensitive. Maybe take a break from them for a while--give them the old "it's not you, it's me" (but we'll all know it really is them! LOL). We got you!
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox

Lydia666
Posts: 676
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: What people say

Postby Lydia666 » Mon Mar 28, 2016 4:50 am

Soccermom2boys wrote:Ugh, sorry to hear that you not only have to deal with your gene mutation, but also people who just don't realize what they say can be so insensitive. At least you can always come on here and we will totally get your frustration and have no problems listening to you or anyone else let off some steam and share your thoughts. Your feelings seem about right on par for where they should be given your situation. In my opinion, we should never have to justify our feelings as we figure out our new path that life has thrown at us (sadly that is not always able to be understood by our family and friends, but doesn't mean we can't want it).

I must say that whole mentality of "no one is promised tomorrow, I could get hit by a bus, blah blah blah" just makes me want to say well thanks, now I have twice the amount of uncertainty--if I don't get hit by a bus then I always have cancer for my back up anxiety attack, thanks for reminding me of that!

We do go on to live our lives, just not quite the way we hoped or planned to before cancer intervened. Was just having a heart to heart talk with my dad tonight and try as they might, those without cancer just can't understand our new reality. I kept trying to assure him that I am living my life, but hell yeah there are some rough days and eventually I can get back to a closer version of my old self but just not able to see it while I am still stuck in the suck (aka chemo).

Again, I feel you on how hard it can be to interact with people who just don't get it and don't realize they don't get it so therefore proceed to say stuff that to you is insensitive. Maybe take a break from them for a while--give them the old "it's not you, it's me" (but we'll all know it really is them! LOL). We got you!

Thank you! That thing that we could all get hit by a bus drives me nuts! We all could have anything happen to us, including me!! I could have other stuff hidden inside my body that i don't know now but right now, i am dealing with 2 cancers and am prone to more! Ugh anyway..,do u thinking explaining things to people would offend them or make any difference?
Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
August 2016- DCIS and decided post prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Dec 20 - 2 round of folfox
Mom to 4 & 7 yrs kids - at least i brought them to this level of independence.

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: What people say

Postby midlifemom » Mon Mar 28, 2016 5:06 am

Lydia,
I do try to explain - to some people. Others I know just won't get it so it's a waste of time.
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

JJ2212
Posts: 268
Joined: Mon Oct 14, 2013 3:54 pm
Location: Montréal, QC

Re: What people say

Postby JJ2212 » Mon Mar 28, 2016 8:35 am

You are definitely not crazy. A lot of people suck at being silent when they don't know what to say. Or they think that being encouraging and positive is always what you need.

I usually just nod, smile and change the subject if I think the person just won't "get" it. I'll explain more if it's someone i'm comfortable being real with, but even then, I've come to realise that it's hard for them to understand if they aren't in the same boat.

I'm sorry about your genetic testing results.

Janie
Rectal cancer dx 04/13 @ 42, MSS, KRAS positive
T3N2M1 (1 lung met)
5 weeks xeloda+radiation finished 07/13
APR 9/13 (permanent colostomy), 27/31 nodes positive :-(
12 rounds of FOLFOX 04/14
Lung met growth 11/14
26 cycles Regorafenib (Stivarga) from 11/15 to 01/17
New lung met and chest/neck lymph nodes 01/17
1 cycle Folfiri

Ragman
Posts: 22
Joined: Mon Mar 21, 2016 9:01 am
Location: Baltimore, USA

Re: What people say

Postby Ragman » Mon Mar 28, 2016 9:20 am

Agreed, definitely not crazy, Lydia, but this is a losing battle that none of us will ever really win, I'm afraid. The fact of the matter is that people don't really have a way of accessing or understanding in a real way the challenges of others. There is just no way for another human being to access the experience of another whose circumstance is different from their own. Just as I would be pretty much clueless in listening/understanding the plight of a blind person or a paraplegic who lost a couple of limbs because I've never experienced it before, the average person does not have the ability to completely understand or empathize with the challenges that a cancer patient goes through. It's human nature and there is no way around it. We can't take it personally because most people are just trying to help out and understand.

I'm 44 now with colon cancer and trying to get other people to understand the experience is something that I have more or less given up on -- I just try to stay positive and provide reassurance to the friends and family members who are interested. But when I was 20 years old and had cancer, a lot of surgeries, lost weight, lost hair, etc., it was very difficult trying to explain to my friends and other 20-year olds in the prime of their youth about something so foreign and "weird" such as cancer. To many I was an outsider, an alien, because of this disease. Ultimately, we are all alone in our battles and experiences. Ultimately, the fight for survival and dignity is ours alone, as individuals. The power to trudge onward comes from within. I am not saying that to make anyone feel worse or more alone, but only to point out that while there are similarities with different human experiences, we are all in the end alone in our particular circumstance (cancer). It might be different for others, but for me I never started getting better or healing until I realized that only I could drag myself up from the mud, and when I stopped looking for others to do it for me. Don't get me wrong -- I am alive today because of others (my family) but I am the one who made it happen. The strength and will to survive comes from within.

But on a lighter note, what I find most amusing is when people ask me if I have started a "foundation" or some other non-profit to help cure the disease. As if while on chemo or recovering from surgery I have extra energy to spare after getting my kids off to school, going to work, and somehow making it home and putting dinner on the table. In other words, just getting through the day can be a major victory and a job unto itself. "Healthy" people don't understand that. I do find it amazing how some cancer survivors DO have the energy to start foundations, etc. To me that is a super-human feat.
44 yr. old male w/family to live for
Rhabdomyosarcoma - Stage III -- dx 21yrs old -- 1991 & 1992 (surgeries, chemo, & rad)
Colon Cancer - Stage IIC -- 2014
Small bowel and Transverse colon resection -- 2014 (w/adjuvant chemo in 2015)
2nd primary discovered in colon - 2015
Total colectomy w/ileorectal anastomosis - February 2016
*More cumulative exposure to radiation in my life than a resident of Nagasaki in 1945*
"You are only as healthy as you feel" - Travis Bickle from Taxi Driver

Lydia666
Posts: 676
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: What people say

Postby Lydia666 » Mon Mar 28, 2016 11:43 am

Ragman wrote:Agreed, definitely not crazy, Lydia, but this is a losing battle that none of us will ever really win, I'm afraid. The fact of the matter is that people don't really have a way of accessing or understanding in a real way the challenges of others. There is just no way for another human being to access the experience of another whose circumstance is different from their own. Just as I would be pretty much clueless in listening/understanding the plight of a blind person or a paraplegic who lost a couple of limbs because I've never experienced it before, the average person does not have the ability to completely understand or empathize with the challenges that a cancer patient goes through. It's human nature and there is no way around it. We can't take it personally because most people are just trying to help out and understand.

I'm 44 now with colon cancer and trying to get other people to understand the experience is something that I have more or less given up on -- I just try to stay positive and provide reassurance to the friends and family members who are interested. But when I was 20 years old and had cancer, a lot of surgeries, lost weight, lost hair, etc., it was very difficult trying to explain to my friends and other 20-year olds in the prime of their youth about something so foreign and "weird" such as cancer. To many I was an outsider, an alien, because of this disease. Ultimately, we are all alone in our battles and experiences. Ultimately, the fight for survival and dignity is ours alone, as individuals. The power to trudge onward comes from within. I am not saying that to make anyone feel worse or more alone, but only to point out that while there are similarities with different human experiences, we are all in the end alone in our particular circumstance (cancer). It might be different for others, but for me I never started getting better or healing until I realized that only I could drag myself up from the mud, and when I stopped looking for others to do it for me. Don't get me wrong -- I am alive today because of others (my family) but I am the one who made it happen. The strength and will to survive comes from within.

But on a lighter note, what I find most amusing is when people ask me if I have started a "foundation" or some other non-profit to help cure the disease. As if while on chemo or recovering from surgery I have extra energy to spare after getting my kids off to school, going to work, and somehow making it home and putting dinner on the table. In other words, just getting through the day can be a major victory and a job unto itself. "Healthy" people don't understand that. I do find it amazing how some cancer survivors DO have the energy to start foundations, etc. To me that is a super-human feat.

very well said and i fully agree. But i still get pissed off once in a while, but i realize i would not have adequate words for other people's plight and the conclusion is to just listen instead of offering opinions, advice or comments. Even other cancer patients have different views on what they are ok with and what not.
Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
August 2016- DCIS and decided post prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Dec 20 - 2 round of folfox
Mom to 4 & 7 yrs kids - at least i brought them to this level of independence.

AnnClare
Posts: 241
Joined: Wed Sep 09, 2015 3:31 pm

Re: What people say

Postby AnnClare » Wed Mar 30, 2016 9:50 am

Ragman - well said.

Lydia - I'm sorry about your frustration, and like many others here, I can unfortunately relate. People either say stupid, inappropriate, or ridiculous shiz to you, or they clam up in moments of awkward silence. Like Soccermom said, that "any of us could get hit by a bus" line does NOTHING to mitigate what you, and all of us here, are feeling as we battle this faceless bastard. As if we're supposed to say, "Gee - you're right! Thanks! NOW I feel better. Silly of me for feeling so down because of cancer."

Another thing that bugs is when people ask how you're doing. I've begun to my keep response to this very superficial, unless it's a certain family member or friend. Co-workers don't want the nitty gritty. I've tried being real (since I've read multiple times that holding your tongue can be bad for your health). I find when I'm real with people who aren't prepared for it, or who don't TRULY want to know, there's that awkward silence, followed soon after by a change in the subject. Sooo . . . next time when said person(s) ask how I'm doing, I usually say, "Good," and change the subject for them. Because in all honesty, they DON'T want to know how we are honestly doing. (Scared, frustrated, tired, going broke thanks to endless co-pays, etc.) When I mentioned to someone recently that I was going to have to tap into my retirement savings, the response was, "It's good that you have one. I've never had a 401(k)." I felt like saying, "Yeah, and you've also never had cancer. I'd rather be in your shoes, bitch." (Yikes - there's that honesty and anger bubbling up again! Pardon my outburst.)

In short, I sadly feel your pain. We're often told that while we're going through this we shouldn't isolate ourselves, but more often than not, that's ALL I want to do - stay home with my husband and our dog. I find social situations mentally and emotionally exhausting because I have to 'act normal' and put on a phony happy face, pretending that it's all A-OK. Being around others who don't have this burden makes me sad, because I used to be one of them and wonder if I'll ever be one of them again. It's a sadness no one can access unless he/she has been in a similar situation (and I would wish that on NO ONE).

This board has been such a great discovery for me. It's like therapy (only way less expensive and time-consuming!) It's where we all honestly "get" one another. We can vent, joke, commiserate, and be totally, brutally honest. We are listened to and understood. We're not met with blank stares, awkward silences, or trivial complaints. We are not judged. It's an amazing community and sometimes, one of the few things that gets me through the day.
42 yr. old female
Rectal cancer Stage 3C T3 N1 M0 - Sept 2015
28 rounds radiation w/Xeloda - Nov - Dec 2015
2/17/16 - Surgery to remove rectal tumor, lymph nodes (2/20+), ovaries & fallopian tubes, temp. ileostomy
3/28/16 - 9/26/16 -12 rounds FOLFOX w/full oxi
Ileo reversal 10/27/16; Port removed 12/1/16
Lung mets confirmed 2/6/17
March-May 2017 - brain mets; brain rad. 5/9-5/29/17


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