Stupid Things People Say to Cancer Survivors

Lilypad50 said:

New here

I have been following your blogs for the past 6 months and feel like I know many of you.  I have found comfort here in the past, but not today.  I feel so angry, I registered so I could add my opinion as a caregiver for the 2nd time around.

My husband has just finished 10 rounds of modified folfox6 chemo...he has colon cancer for the 2nd time (1st time 5 years ago--plasmoblastic lymphoma (stage 4, with a surprise adenocarcinoma)...discovered during surgery where they removed 3 feet of colon...suspected was just Krohn's disease-related.  NOT!!!! (chances of being alive in 5 years - less than 10%)

Now 5 years later, he had another 2 feet 6 inches removed (suspected Krohn's-related--did not light-up on the PET scan)...surprise - adenocarcinoma in the small intestine, again.

He is the bravest person I know.  He does not look ill, just a little more tired.  He has great color - non-gray.  He will beat this - it is not his time - the children and I still need him.  He is a warrior - I'm not sure I could handle everything he is going through .  He goes to work everyday--not a desk job, either!  He needs to hear these things.  If we (as caregivers/friends/family) don't say these things, you complain that we don't care or that we are not sensitive.

Should I tell him that his dark circles make him look like a raccoon?  Should I tell him that he is thinner than ever?  Should I tell him colon cancer is a killer and his chances aren't great?  Do I pound into him that his risk for recurrence remains high because he has Krohn's disease?  Or should I let him live happy, feeling great, relieved this round of chemo is over and allow him to make future plans and feel excited about the future?  

What should people say to those with cancer?  Oh, wow, what a bummer?  Yeah, I thought you looked ill for a while, now?  So, how long do they say you have to live?  You look great bald?  

I find that people who have cancer become very self-centered and selfish.  Many of you justify this with "I don't have time for people who cause me stress...I don't sweat the small stuff anymore...I only do things I enjoy...and the list continues...

You want to wave the cancer flag, but you don't want people to try to interact with you.  We don't know what you want to hear.  We do know that people are beating cancer and/or are surviving with it.  We do still need you to care about us and what we are going through.  Our lives are not less important than yours!   When you were diagnosed with cancer, our lives changed, too, forever!!!!  

I am amazed by my husband and his strength.  He is my hero.  I tell him so every single day.  I admire his determination.  I gave him a high-five when his last treatment was finished.  We still high-five each other.  We still believe he is going to beat this.  He has many things he still wants to do.  Lucky for our family, they include us.  Many of you are only looking inside yourselves now.  Try to remember your friends/family/caregivers had hopes and dreams, too, before you got this awful disease.  You may only feel like doing what you want to do now, but we are still here, too.

I thank you for listening.  I expect many angry backlashes.  That's ok...I am pretty tough...I am a caregiver.

Best to all of you!

Lily

 

 

 

 

I Apologize

Not sure if you meant you joining or meaning me  Kidding aisde, if me, I am sorry, I usually try to be careful in comments, and I am not sure which post I made. But I think it is the former? 

I have tried to reduce stress and not get as worked up about things.  And I usually do not discuss my cancer that much.  People I told all are people who I know do care but will not be into talking about it.   In other words I know many people who like drama or will put it out on the gossip circuit.  Anyway, it is often, a quick "Hey you good," "Any recent news?" and move on.  There is really not much to discuss (for me) at this point.  The most I ever "talk" about cancer is here or if I meet someone in real life who just got diagnosed.  It has happened a few times.  I often have posted in the past about seeing the concern in my wife is tougher than the surgery and chemo in many aspects.

The one point I have found is that cancer survivors are far from self-centered and selfish.   I have been around many, many, many patients as both an volunteer EMT and a patient.  And I have found that the cancer patients have really helped me get through this, such as people on the board.  

It may be communication on posts cannot convey things completely, it may be in part the banter and the rest, coupled with sometimes just humor or discussing certain things that a cancer patient gets from a certain perspective of having things chopped out of the body and poison pumped in.  And I do not recall one person on this board ever showing less than complete support and respect for caregivers and families of cancer patients that are here. There are many here who are caregivers and not patients.

Anyway, hang out here.  Start a thread like Tru said to do, introduce yourself, ask questions and advice or just blow of steam in whatever manner helps (I like joking around often, but happy to curse from time-to-time )  I was about to post something, but opened this thread first

 

 

Lilypad50 said:

New Here - meant me, not you

Hi New Here:

I agree that survivors/patients are incredibly kind and supportive of each other...it's an exclusive club with way too many members...these forums testify to it.  I was simply trying to remind everyone that their non-cancer support system is still there, maybe in the wings, but still waiting for you to come back to us.  We don't know what exactly to say and we are very scared for you.  We're not sure what topics are safe and it's hard to ignore the elephant in the room, but unless you bring it up, we just stand next to it, not sure what to do, maybe just look down at our shoes.  Remember the people you loved before this horrible disease moved in and help them squeeze back into your lives.  Many say their friends have disappeared...they are still there, they're just not sure what to say/do/think. The thought of maybe losing you is overwhelming and it blocks our throats and puts tears in our eyes, whether you see them or not.

I wish you continued good health and much happiness!

Lily

Holy Moley.

 

Holy Moley.

Re: “NewHere” and “LilyPad50”......

What Sue and others are trying to convey to you is this:

You are replying and posting to a thread from 2009, not a thread from this year 2016. Many of the individuals are no longer alive. That's the reality of Cancer.

Normally on most forums, old, outdated threads are archived and “locked”. New posts cannot be made to the locked threads, you can read the posts but can not reply or post to them. Almost ALL forum software has that provision. The technicians that handle this CSN forum either do not understand the software, or do not care and the old posts are not archived or locked.

You have not committed a “crime” by posting to an old, old thread; we all do it unintentionally at times. But if and when we do, it reminds most of us that have cared so much about the health of those that have died, that they indeed have died. It reminds us of our own mortality, and just how much we fear this terrible disease. For some, it can destroy what hopes they had for their own survival.

I try to look at the date the original thread was started prior to posting to it.

Those that are commenting to your posts are simply attempting to alert you to the facts.

Welcome to the board! Everyone here wishes you well and will always attempt to be here for you.

We all care!

Best wishes,

John

 

 

 

Lilypad50 said:

New here

I have been following your blogs for the past 6 months and feel like I know many of you.  I have found comfort here in the past, but not today.  I feel so angry, I registered so I could add my opinion as a caregiver for the 2nd time around.

My husband has just finished 10 rounds of modified folfox6 chemo...he has colon cancer for the 2nd time (1st time 5 years ago--plasmoblastic lymphoma (stage 4, with a surprise adenocarcinoma)...discovered during surgery where they removed 3 feet of colon...suspected was just Krohn's disease-related.  NOT!!!! (chances of being alive in 5 years - less than 10%)

Now 5 years later, he had another 2 feet 6 inches removed (suspected Krohn's-related--did not light-up on the PET scan)...surprise - adenocarcinoma in the small intestine, again.

He is the bravest person I know.  He does not look ill, just a little more tired.  He has great color - non-gray.  He will beat this - it is not his time - the children and I still need him.  He is a warrior - I'm not sure I could handle everything he is going through .  He goes to work everyday--not a desk job, either!  He needs to hear these things.  If we (as caregivers/friends/family) don't say these things, you complain that we don't care or that we are not sensitive.

Should I tell him that his dark circles make him look like a raccoon?  Should I tell him that he is thinner than ever?  Should I tell him colon cancer is a killer and his chances aren't great?  Do I pound into him that his risk for recurrence remains high because he has Krohn's disease?  Or should I let him live happy, feeling great, relieved this round of chemo is over and allow him to make future plans and feel excited about the future?  

What should people say to those with cancer?  Oh, wow, what a bummer?  Yeah, I thought you looked ill for a while, now?  So, how long do they say you have to live?  You look great bald?  

I find that people who have cancer become very self-centered and selfish.  Many of you justify this with "I don't have time for people who cause me stress...I don't sweat the small stuff anymore...I only do things I enjoy...and the list continues...

You want to wave the cancer flag, but you don't want people to try to interact with you.  We don't know what you want to hear.  We do know that people are beating cancer and/or are surviving with it.  We do still need you to care about us and what we are going through.  Our lives are not less important than yours!   When you were diagnosed with cancer, our lives changed, too, forever!!!!  

I am amazed by my husband and his strength.  He is my hero.  I tell him so every single day.  I admire his determination.  I gave him a high-five when his last treatment was finished.  We still high-five each other.  We still believe he is going to beat this.  He has many things he still wants to do.  Lucky for our family, they include us.  Many of you are only looking inside yourselves now.  Try to remember your friends/family/caregivers had hopes and dreams, too, before you got this awful disease.  You may only feel like doing what you want to do now, but we are still here, too.

I thank you for listening.  I expect many angry backlashes.  That's ok...I am pretty tough...I am a caregiver.

Best to all of you!

Lily

 

 

 

 

Not angry backlashes.  But

HOLY COW.  I just read this post.  Lilypad, I understand you are having a bad day and a hard time but WOW!!!!  Not angry backlashes.  But you lack understanding in what it feels like to be "the one". Did you really just call cancer patients selfish?  Your post is rather insulting and "we could all get hit by a bus anyday" is what this post was about.  Light hearted what has made you feel bad posts.  It was a chance for us, those of us who actually have cancer, and are afraid of dying to let loose among each other.  I am not being critical in any way, shape or form when I say this but being the one WITH cancer and being the caregiver are two different categories.  Just like we don't know what you are going through, you have absolutely no idea how terrifying it is to have cancer in your body.  So sometimes it's better to just keep the negativity and criticism to yourself, after all, you're not the one actually dying.  When you are, feel free to judge "the selfish".

So will add, name something that hurts when you are the one WITH cancer and someone says something "stupid".  I'm putting that in quotes out of kindness...... see Lilypad's post. SMH