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Conversation with my coworker - cancer in a word

Helen321's picture
Helen321
Posts: 1393
Joined: May 2012

My coworker asked me how I felt now that I am post cancer.  I wanted to say, cancer doesn't really end, it may disappear out of your body but it often leaves behind body damage, permanent disability, and awareness of how fragile life really is, things we just don't talk about.  Instead I said . . . . in one word, during cancer I was scared.  After cancer I am humbled.  I hope one day to describe myself as mentally healed=)

 

 

BillO60
Posts: 72
Joined: Mar 2015

I like to talk and when my wife was alive we could talk about anything. We were both nurses, she an RN and I an LVN, and neither of was shy about discussing medicine, sex, psychology, life, etc.  When it came to work we had common ground and could relate to what the other was saying because we had shared experiences.

Then I changed professions and moved into I.T.  While we still talked about the nursing issues she was dealing with we rarely talked about things related to my work. When I did bring up a project I was working on she would politely listen but had no idea what I was talking about.  Because she had no interest in the topic and no experience in that field she couldn't relate to it.

When I was first diagnosed, even though on some level I knew better and tried to keep my mouth shut, I found myself mentioning I had cancer to a few people that didn't really need to know. It was like my mouth had a mind of its own.  Since then I generally try not to overshare about how I'm feeling, treatment, or upcoming attractions because most people have no frame of reference that will let them empathize with what I'm going through. 

Even for the folks in these discussion groups there are so many different treatments, stages, personal situations, emotional and physical issues, and other things going on with each and every person, both the person that has been diagnosed and their family and friends, that sometimes it's difficult to fully grasp what is going on and relate to it. 

I think it's a thousand times harder for someone on the outside. While they may be sympathetic, they can't really, truly grasp what it means to have cancer.  My wife died in 1999 after fighting colon cancer for 5 years. I was a nurse and all I could do was be there for her and deal with symptoms. Over the past 13 months, I can now say I have a much better understanding of "some" of what she was going through.  

The few people that know I'm going through cancer treatment don't really want to know the details.  They just want to know when I'm "cured".   They haven't said it but it's pretty easy to tell from body language, eyes glazing over, awkward silences.  These are not insensitive people, they just don't get it (and I hope they never will).  I can't even say these people are scared of it because it's one of those diseases that happens to "someone else, not me".  I think at one time I actually believed that as well (silly me Foot in Mouth).  Then I found out I'm not immortal after all Surprised...

So, when someone asks me how I'm doing I just say fine, or I'm a little tired, etc.  When someone says "You're looking really good" when I feel exhausted and want to crawl into bed and sleep for a week, I just say thank you, I'm doing better.  Just the usual meaningless polite response that makes everyone feel more comfortable. 

Cancer is the ultimate in negative personal experiences, one that is difficult to convey in words that others who have never had it or been around it will ever be able to understand.  That's not surprising because before Cancer had me it wasn't something that was on my bucket list to think about and try to understand.

You have a good attitude and you've got a better understanding of how cancer can make someone feel than most healthcare professionals and experts.

Bill

 

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Lookin' good....

Re:
"When someone says "You're looking really good" when I feel exhausted and want to crawl into bed and sleep for a week, I just say thank you"

I hear that way too much, and it's if I have absolutely nothing wrong with me. Even my physicians greet me with "You look great; your color is fantastic"!

My answer's always the same:
                       My urine looks great too, but it's still urine.

It gets a laugh, but it's to the point.

Looks ain't everything.

Be well,

John

Helen321's picture
Helen321
Posts: 1393
Joined: May 2012

John, you're a hoot. Even in your worst moments, you crack jokes.  lol Yes it is still urine.  I really hope there are days where you feel as good as you look.

beaumontdave's picture
beaumontdave
Posts: 997
Joined: Aug 2013

Made all the same mistakes, offering too much information, thinking people could relate. Lost Cindy 11 months ago to a brain tumor that we fought for 6 1/2 years. That scattered all the people we knew, leaving family to obligatory visits, except for a precious few, like my mom, sister, and niece, the best of people. What's lost is my faith in most folks, their need to be comfortable in the face of your hard reality, left me feeling cold about most of humanity. I'll have lots of friends if I make it to a "happy" ending, but what is lost, what I've lost, is a belief that most people care. They do to a point, then it's gestures, the proper words and see you later. Really caring involves investing of yourself, I'm not sure I would have before all this, so I can't be that angry, but I am just the same, at myself, at those I believed in, and the average fool who has no idea how hard, hard can be...................................................Dave

Helen321's picture
Helen321
Posts: 1393
Joined: May 2012

Dave, in a world where you feel lost and like most people don't care, I can't offer much but I can tell you that sincerely, I care about you and so many other people on these posts.  People I've never met but mean the world to me.  I really care what happens to each and every person on here.  I grieve for people I've only met through words.

I didn't actually tell anyone at work except a few close people, my ex boss did. I love him dearly but he worries about everything and he told 17 people within 24 hours of me telling him. Those 17 people told other people.  I work in a place with 1500 employees. He was worried about me and wanted to make sure I had support at work.  The funny thing is, thanks to him I had amazing support at work. Even better than I did at home.  I've known some of the people there for 22 years.  I love him too much to be mad at him. Even the guy that asked me the question is just a nice guy. He thinks I have some hidden insight but all I have is a bunch of broken, just trying to find stability.  It is hard.  3 years out and disfigured and don't know how to deal with it sometimes hard.

lp1964's picture
lp1964
Posts: 1238
Joined: Jun 2013

Went through the same stages. During treatment although feeling the real danger we are in survival mode which makes it bearable, because we new exactly what we were dealing with: cancer. After treatment starts the real adjustment and healing begins, because now we have options and uncertainties. Temporary or permanent remissions with a ton of physical and mental scars.

Post cancer is almost harder on me than the actual treatment. A few months ago noticed that my wife was still scared and exhausted and there were signs under the surface that she cant really deal with the things I was left with so I set her free. We are both disappointed in the failure of our marriage but we seem to be better this way and I believe the future will prove us right. 

I am very open about my cancer and post-cancer experience. I am proud of myself for myself the way I did my very best to handle it. But mainly I want to show people that if they or any of their loved ones may ever have to deal with this it can be done. They may not get it now but if God forbid it becomes relevant for them I want them to remember that guy (me) who handled it so well.

Laz

ron50's picture
ron50
Posts: 1721
Joined: Nov 2001

    Mate I am sorry to hear about your marriage, that too is one of the symptoms of cancer that I have experienced. I did not make it hard for my wife to leave , she was never able to deal with my cancer , could not even stand to go to chemo with me. Sometimes I think that cancer is a battle better fought alone. Sadly othes do not relate well to people afflicted with cancer and is it any wonder all that have posted here bear some truly wonderful reminders of the disease ,Helen and John please forgive my sarcasm. I am not scared of cancer , never was , but I have always hoped for a peacful end. I am out past 18 years now and if I could describe my feelings of life with and post cancer I would say that it is like travelling down an ever shrinking tunnel at the end of which I will finally dissapear up my own fundamental orrofice . I was at my gp on wed and he checked my breathing which has been causing me concern of late. A few years ago I was in hospital with parainfluenza. It hit me so hard that I wa leaking troponin , the heart attack enzyme. During tests they decided that I had severe asthma and sent me home with a ventolin spacer and a symbicort turbohaler. I have had a couple of acute attacks lately so my doc put me on the spirometer. Idid the mantatory four tests ,had four puffs of ventolin waited ten minutes and had another spirometer reading. There was little difference. My doc does not believe that it is asthma, he thinks that it is copd with options on a couple of other nasties like fibrosis and pulmonary hypertension. He prescribed a drug called spiriva. Alarm bells went off and I researched it. It can cause serious kidney problems including severe nephrotic syndrome. I already have severe nephrotic syndrome losing up to seven grams of protein a day thru my urine. I gave my nephrologist a call. I talked to his receptionist and she said she would call him at one of his travelling clinics. If she rang me back it would be to tell me it was ok to take the drug. If she didn't ring don't take it till I see him and discuss it. No phone call. That narrowing tunnel is one of ever decreasing options and for me that describes cancer survival.. Hugs to all Ron.

Helen321's picture
Helen321
Posts: 1393
Joined: May 2012

Ron you are now and forever will be my hero.  I know you don't think so but you are. You do things that none of us can even imagine.

janderson1964
Posts: 2215
Joined: Oct 2011

Laz I am so deeply sorry about your marriage. It really saddened me to read that. You have been through so much heart ache. Stay strong my brotber.

Trubrit's picture
Trubrit
Posts: 4859
Joined: Jan 2013

Thats not good news! I am sorry to hear it, though as always, you face your trails with aplomb. 

I hope you are both still friends and that she still supports and loves you as a friend.

Trubrit

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Laz, I am so sorry. I can't imagne going through this alone. I am so blessed to have a wonderful, supportive husband and an adult daughter who is my rock. I remember reading the stats about marriage break ups at the beginning and reading that the rate of men leaving women with cancer is much higher than the rate of women leaving men with it. Even women who were planning to leave will often stay after the diagnosis. I wondered if Jim would be able to hack it and he proved himself to be amazing and it has actually made our marriage better.

Ron, same to you. I'm sad for both of you. You've had a long, hard battle but you're an inspiration to all of us. I hope this latest crap will be resolved easily and you'll get past it quickly.

Hugs to both of you and to everyone else. We're a bunch of tough cookies and I pray we'll soon see something that will make our lives easier. Maybe the vaccine from Cuba I've been hearing about? Whatever it is, I pray that it will be something that can help us without doing damage elsewhere. Something easy to take like a pill and that works quickly and gets rid of cancer once and for all.

lp1964's picture
lp1964
Posts: 1238
Joined: Jun 2013

Hey it's not the end of the world. After cancer you realize how precious your life is and most things are not that critical. I really believe that we should be in a relationship if it only adds to your life and both of you can be better than you would be alone. If it's not the case there is no reason to continue. I'm optimistic about every aspect of my life until further notice.

Thanks for the kind words again.

Laz

BillO60
Posts: 72
Joined: Mar 2015

After over 30 years of constantly being in relationships I had to adjust to living alone and that was tough for awhile. What helped me to learn to like living alone was dating.  After the first three women, one of whom was a well meaning introduction by someone in my late wifes family, I really started appreciating how nice being alone could be. 

I moved from rural Arkansas to L.A. about 8 years ago and not only have I learned to live by myself, I discovered that I like it, at least for the time being.  An acquaintenance of mine has been dating a woman for the past 3 years and recently they became engaged.  He just turned 75 so I figure there's still hope. 

I absolutely agree with you that a relationship has to be good for both people. Kind of like the whole has to be greater than the sum of its parts and both people have to gain something good from the relationship.

Bill

 

 

Helen321's picture
Helen321
Posts: 1393
Joined: May 2012

Wow Laz, I"m really sorry to hear that.  As you may remember, I was getting divorced before cancer and put it on hold when I got sick. Afterwards it was easy for me to just say hey time to move forward with this.  Two years later I'm tryng to date.  It's pretty hard with the physical circumstances but I truly believe that one day, there's going to be that someone who accepts me for the intelligent person that I am with the physical "disability" that I bring to the table and looks right on past it. I've had some not so fun moments on dates where the subject comes up. One man was very understanding and okay with it but he just wasn't the right person for me.  It's really hard to have these issues at such a young age. We seem to be on a similar path.  Some days are up, some days are down.  And the goal remains, find that healthy mental place where the mind is at peace. I know it's coming.  

vtspa6
Posts: 172
Joined: Aug 2015

My husband always tells everybody that he feels great!  I give him that look like 'are you kidding me?'  I keep my mouth shut tho.  I am sure there is a reason why he says this. 

Lovekitties's picture
Lovekitties
Posts: 3327
Joined: Jan 2010

As I think back to before cancer became personal, I was among those who didn't know what to say or ask.  When you ask "how are you doing?" it is to show a measure of caring about the person.  When you say "you are looking well (better, good)" it is in the hope that you really are well, better, good.  When you ask "is there anything I can do", it is because they would really like to help but don't have a clue what is needed. 

Just as each cancer has its own individual characteristics, so does each person who has cancer.  You can't tell from the outside how a person will react to the total stress of the disease.  That also means you can't judge their reaction to well meant comments.

Granted there are total duffasses out there who, no matter what they say, could really care less.  But those are also the ones who don't show any different reaction to a person with the flu, broken arm, etc.  They just don't have the empathy gene.  I once worked for a man who would always ask "how are you doing today?".  I thought he was being kind and would speak the truth.  One day he finally told me, he really didn't care and was just being polite.  From then on when he would ask my response was "just peachy".

While we may get frustrated with the well meaning folks, we can't fault them for their ignorance of a disease that scares them silly.  They don't want to know what could happen to them or someone they love.  I never had a clue how life changing cancer is.  It is the same for so many things in life.  Unless we have personally been touched by it, we just can't comprehend what it really means.

It will only be better understood when more information is delivered to the public about the impacts cancer has, not just on the body, but on the mind, emotions, and quality of life.  The life after treatment ends, is often more difficult than what went before, just in a different way.

There will always be those duffasses out there who don't merit your stress or concern about their comments.  Just as there will always be the well meaning who are just too scared to know the real story.

Marie who loves kitties

Helen321's picture
Helen321
Posts: 1393
Joined: May 2012

I posted this without clarifying that my coworker seemed to be looking for the "meaning of life" as if I had some incredible insight.  He is a nice guy and definitely meant it with the best of intentions, I never saw it any other way.  Sadly, 3 years out and although the cancer is out of my body, the damage is powerful. Dealing with an ostomy, disfigurement, lack of ability to exercise without pain, prolapsed organs. I'm really ready for some physical answers and some mental healing after all of this. I didn't see this as my life at 46 and I'm ready to try to start to make heads or tails of it all and hopefully find some real mental peace.  I may never find the physical peace but I am going to fight for the mental peace.

beaumontdave's picture
beaumontdave
Posts: 997
Joined: Aug 2013

It would be great if going through this crap unvailed the meaning of life, but it doesn't. Suffering brings no answers, but it sure makes you ponder things. It also makes chasing your bliss seem so shallow, as many I know devote their lives to. I enjoy the moment, today, Easter was terrific, but there must be more, or life's just a cruel lottery where some win and most lose...........................................Dave

beaumontdave's picture
beaumontdave
Posts: 997
Joined: Aug 2013

Yeah disfigured, I look like I'm hiding a baby on my right side, from the belly button over. It's small potatoes on this board, but it bugs me. I have a binder, but I can barely stand to wear it, in cool weather only. If I make 2 years I'll push to fix it, but no matter what, I'll look like a road map, just the price of surviving, I guess.......................................Dave

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