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People Don't Know What to Say

ProfWagstaff's picture
ProfWagstaff
Posts: 98
Joined: Jun 2010

A lot of these posts have talked about finding humor where you can in this mess. I thought I'd share something that has become a punchline among ny cadre of PCa survivors. I mentioned before that my younger brother was diagnosed 7 months before I was. When my nephew was telling his girlfriend of his father's diagnosis, of course she tried to make him feel better but used the wrong words. I'm sure she was referring to the myriad of treatment options and lofty survival rates, but what came out of her mouth was, "It's not like he has REAL cancer." She meant well, but now we throw that line around all the time. When we talk about any of our experiences, one of us will always bring up how grateful we are that we didn't have REAL cancer.

luckyman2's picture
luckyman2
Posts: 54
Joined: Sep 2009

You're right, sometimes people mean well but just don't know what to say. I remember attending a funeral for the parent of a friend. He asked one of the guests, "How are you?" She replied, "Still living." He promptly walked away.

As for the girlfriend who said, "It's not like he has REAL cancer"... I guess my wife and I can be thankful that I didn't have a REAL prostatectomy!

ProfWagstaff's picture
ProfWagstaff
Posts: 98
Joined: Jun 2010

Now you're using that line the same way WE do. We have to make fun of this because the alternative is too depressing. When Dennis Hopper passed away a few weeks ago, I wonder if his family thought Prostate cancer was REAL cancer or not? Keep on smilin' folks. It beats the alternative.

griff 1
Posts: 114
Joined: Jun 2010

i think people do not think before they say things. yes i have real prostate cancer and it has sucked all the tests and then surgery. then the aftermath of needing pads and such, we need those people to get on this webite and read about the procedures and then maybe they would keep their comments to their selfs. you are right profwagstaff we have to laugh or it is worse. good luck to all griff

JR1949
Posts: 230
Joined: Jun 2009

People really don't know what to say sometimes about cancer. Some people do not know how to respond when you tell them you have cancer. My wife and I are both cancer survivors and we have experienced this. It is not a lack of concern or compassion or sympathy. I'm sure it has a lot to with the fact some forms of cancer are more serious than others depending on the stage and whether the patient is symptomatic or not.

I can tell you that a lot of people think skin cancer is nothing more than a mole and not serious. They just do not know about the various types of skin cancer. I confess when my wife told me she had skin cancer back in 1991, I was not aware of the types of skin cancer, especially melanoma which is what my wife had. She explained it to me from what the doctor told her. Now she was fortunate that she went to a dermotologist who was smart enough to take a biopsy and refer her to an oncologist. Long story short, the area around the mole was excised and lymph nodes removed. My wife was cancer free from April 1991 until June 2009 when she was diagnosed with stage 4 metatastic recurrent melanoma. We praise God that she continued checkups annually and since the melanoma was found early enough. Through the grace of God, prayers and the oncologists at the hospital, she has been cancer free since December 29, 2009.

I was diagnosed with prostate cancer and had radical prostatectomy March 2009. I am to date cancer free with a PSA of .008 and give the credit to God and prayers too.

I just wanted to tell you our story to explain we know how some people just do not know what to say.

JR1949
Posts: 230
Joined: Jun 2009

I agree ProfWagstaff, we members of this PCa club just need to keep on smilin' cause it really does beat the altenative.

JR

lion1
Posts: 239
Joined: May 2007

I know exactly what you guys are saying. 4 years cancer free, but incontinence remains. I constantly hear from friends and work mates all those jokes about Depends and diapers. Fortunately, they don't know I'm incontinent and if they did I'm sure they would hold their comments when I was around,(MAYBE) But I assure you when I wasn't around I would be the brundt of their jokes. Unfortunately, it's human nature and until people are affected personally, the jokes will just keep coming. I mean the viagra jokes are endleSs, but I don't like them. I take cialis and the spontaniety of my sex life is gone and it hurts. But, it's an insensitive world---what the hell could you do!

I just let it slide and don't encourage anything...afterall I'm living that nightmasre.

Lion1

bdhilton
Posts: 752
Joined: Jan 2010

Yes many people I treat me and my wife differently since I was diagnosed with this beast... I have 101 stories on this subject but my 2 favorites right now are (1) A neighbor hide in a display at Home Depot to avoid us about a month after I had surgery..Yes I went to the display and said “How are you doing?” ….Now that was funny…(2) a man I promoted to a VP about 10 years ago I asked for assistance in getting a job (been out of work 2 years) about 2 months ago and he told me he could not do that because I had cancer and was sick…. That made me smile as I am 50 pounds lighter than this man, I am still an athlete and my wife tells me I look about 10 years younger than him (and he is 5 years my junior)….

But at the end of the day the people that I have always cared about and are important to me nothing has changed… This is an interesting journey so make the best from it and learn like a child…

Best to all-B

ProfWagstaff's picture
ProfWagstaff
Posts: 98
Joined: Jun 2010

Those were good stories, B. I think the thing that took me a while to get used to is that once I was off the catheter, everyone outside of my closest circle stopped being concerned. I guess they figured the fight was over so no more cause for concern. I think we all know that it feels a lot different when you're the one still fighting. I had to learn that when most people ask, "How are you doing?" they don't really want to know about how my recovery is progressing, they just mean, "hi." Now, before I tell them how my recovery is going I wait to see if they still look like they're expecting more info when I answer, "I'm okay." I walk a fine line between wanting people to know what this is like and trying to avoid boring people who don't really want to know(or are uncomfortable hearing how it's going.

hopeful and opt...
Posts: 1282
Joined: Apr 2009

so instead of answering these people, I learned to say, "I'm hanging in there".

I find that , especially when I was diagnosed, I was very sensitive to reactions of people who I told......some were insensitive because of ignorance, but it still hurt. Also others who I thought were there for me, were not.

Ira

griff 1
Posts: 114
Joined: Jun 2010

yes i know what you mean, i have people that i have worked with for ten years and now my surgery is done its all ok and you,ll be up and running in no time, they really don,t want to hear about it and what is after treatment. i think most don,t even know about pads and such and what we have to do and go through. bd you should have told that vp that you are in great shape and he should go to the gym or running with you. ha ha. pro you are right our inner circle are the ones that count and they know, so to heck with the ignorant people out there. best to all griff

142
Posts: 169
Joined: Dec 2009

I generally answer "how are you doing" with "ain't see'n the grass from the roots side yet".
People ask if I'm having problems, since it isn't really cancer - have been known to reach down, pull out a wet pad, and put it in their hand.

griff 1
Posts: 114
Joined: Jun 2010

142 that is great, i might to that and blame it on you. ha ha griff

Trew
Posts: 891
Joined: Jan 2010

Then i guess I don't have "real" after effects of PC surgery and radiation, either?

Well, of course not since I never had real cancer.

This post did touch my funny bone a bit, but I don't suppose that is real either.

ProfWagstaff's picture
ProfWagstaff
Posts: 98
Joined: Jun 2010

Now you've got the idea, trew. I didn't have REAL cancer and I won't have REAL anxiety when my next PSA is due in December. I'm a little over a year removed from surgery and they just "graduated" me from three month PSAa to six month PSAs. That means I only stress out twice a year now as compared to 4 times. Knowing what I go through mentally with this, I think it'll do until REAL cancer comes around! Since so many cancers are survivable these days, I think people tend to overlook the other tolls this thing takes on its victims - the emotional tolls and the quality of life tolls. Even without chemo or radiation, this was WAY too real. Still I and several other friends of NED love throwing the "REAL" cancer line around. It shocks the non-victims around us.

Trew
Posts: 891
Joined: Jan 2010

With positive bladder neck margins I am in a little higher catagory for recurrance.

I must confess, after all I have been through and lost, I keep telling myself, this just CAN'T be real. Just a bad dream that doesn't end. So unreal!

hopeful and opt...
Posts: 1282
Joined: Apr 2009

Believe it or not, because I am on active surveillance , one of my family members insists that I don't have cancer. I'm also told that I am a hyprocondriac (sp) since I had frequently been going to doctors , physical therapists and support groups . I was also diagnosed with spinal stenosis. I simply do not mention my health issues any more.

When I was first diagnosed, and did not know what my treatment would be, I mentioned the prostate cancer to a clergyman, who told me that his brother was a urologist, and this was nothing......................about 3 or 4 months later he asked me how I was doing....I told me, well the same thing.....He didn't remember what I was talking about....At that time I was in shock and consumed with this.

Anyway this is my therapy session. I'm glad that I "REAL" y don't have cancer and am a hypocondriac

ira

NM
Posts: 214
Joined: Jul 2009

Not a real cancer? It put my dad in his grave and still might put me there, Early diagnosis for me gives me hope but this is a for real cancer.

Did my bitterness show hope not, peace to all survivors

Nick

luckyman2's picture
luckyman2
Posts: 54
Joined: Sep 2009

Even though some feel that it's not a "real cancer", the aftermath of my surgery has left me with a libido of zero while still having the ability for an erection, but with very little sensation, if any at all. It can't be real! I am now on meds just to be able to cope and I completely avoid any situation with my wife that will have even the slightest possibility of leading to a romantic encounter. She is very understanding and and we've talked about it many times. This is not a "real cancer"... and not making love to my wife isn't a "real" problem now is it?

ProfWagstaff's picture
ProfWagstaff
Posts: 98
Joined: Jun 2010

I recently took part in the Survivor Lap at our local Relay for Life. I saw several children under the age of 8 among the group. I also saw several people, including one of the kids, with no hair because of chemo. I seemed to be in pretty good shape except for the loss of some nerves during surgery. I almost felt guilty being among that group because I didn't go through a lot of what they did. What I learned by joining this site is that we're ALL victimes, just in varying degrees. As lucky as I feel to come through this (so far) as well as I have, I wouldn't wish ANY of the anguish I've gone through on my worst enemy. My brother and I throw the "Real Cancer" line around as a puncline but also as a badge of pride because we know what we overcame. It was and is all too real. The thing is...the general public has no idea what we go through. Symptoms, if any, and after effects involve bodily functions not generally discussed in casual conversation. They see us go to the hospital, come home, and resume what appears to be a normal life. In their minds, problem solved. Among ourselves, victims and survivors, we know that's not the case. I have a friend from college who was also recently diagnosed with very low grade stage 1. After much anguish, he has opted (for now) for active surveillance as well. Tough choice because PCa is what eventually took his father so that will weigh heavily on a daily basis. No, even undergoing active surveillance, you do have real cancer. As Dr. Walsh said in "Surving Prostate Cancer," don't understimate your enemy.

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