How "public" are you about your illness or its after-effects?
In my case, I'm a local band (meaning: financially vastly unsuccessful) musician, so I have a bit more "high profile" to begin with. It's my theory that people generally like their musicians at least a bit quirky or larger than life. In reality (aside from being a 53-year-old who goes around calling himself "Brian Krashpad") I'm pretty normal, but I have always been more than happy to do a bit of self-promotion and hyperbole if it meant another butt through the door at a gig.
As to having got cancer, frankly I was/am a little conflicted about it all. I didn't want to make a big deal out of it and somehow redefine myself as BK, CANCER SURVIVOR. At the same time, I didn't want to hide it either. It was and is a part of my life, and I'll be dealing (hopefully in smaller and smaller increments) with it forever. So I've just tried to be truthful about it and find some humor in it. (C'mon, a jaw bra is effin' FUNNY! Well, to me it is, anyhow.) If someone who gets a "Big C" diagnosis should have seen me dealing with it in a public way in a guitar forum (my more usual online haunts) or on facebook or somewhere else, and that person ends up being a little less scared out of their wits about it, then it will have been well worth sharing.
I write a music column for a magazine, and my editor is an old college buddy. He also writes his own column, basically a personal thoughts piece. His sister recently was diagnosed with cancer, so apparently in the next issue he is going to ruminate about cancer and life and death/health issues, including some reference to me (he asked my permission to mention me). Again, I was a little conflicted about this, as my own self-image is an equal split between aging local punk rocker/musician/"music journalist" (most real journalists will tell you that that last term is an inherent contradiction) on the one hand, and church-goin' family man on the other. With "lawyer" squeezed in there somewhere. Guess I'll hafta make some additional room for the story of Rutherford.*
Sigh.
*"Rutherford" was what I called the lump on my neck before my surgery.
And you?
Comments
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scarsDav1965 said:I have scars
I see people stare at my scars i was cut from ear to ear and had a trach plus i had 6 drains coming out of my neck and each one is about 3/4 inch long so i look like i have been in a knife fight and lost.
I have a relatively small neck scar, maybe just a few inches on one side. I made light of it (again, this is my scar, not anyone else's) on my facebook page as my "Hang 'Em High" and/or "Frankenstein" scar, so most people whom I know but whom I haven't seen in person since the surgery know what they're in for.
I will admit to a certain amount of vanity, but as a guy I figure there's always the "chicks dig scars" angle. Again, not to make light of anyone else's sitch, humor is how I deal with mine.
But I bet it's a LOT harder for women and our cultural obsession with females being "beautiful" as part of their self-image.\
Be well!0 -
PublicBrianKrashpad said:scars
I have a relatively small neck scar, maybe just a few inches on one side. I made light of it (again, this is my scar, not anyone else's) on my facebook page as my "Hang 'Em High" and/or "Frankenstein" scar, so most people whom I know but whom I haven't seen in person since the surgery know what they're in for.
I will admit to a certain amount of vanity, but as a guy I figure there's always the "chicks dig scars" angle. Again, not to make light of anyone else's sitch, humor is how I deal with mine.
But I bet it's a LOT harder for women and our cultural obsession with females being "beautiful" as part of their self-image.\
Be well!
Very Public
due to:
1. Small town, a lot of people pretty much knows
2. Work for one of the larger employers, and feel we all went through it together.
3. The cancer became a good measuring tool for me in prioritizing issues
4. Possible laziness..I posted my biopsy results on facebook because it was easier than
taking a lot of phone calls
STacey0 -
Chicks so dig scars, men in uniform, and accents.....BrianKrashpad said:scars
I have a relatively small neck scar, maybe just a few inches on one side. I made light of it (again, this is my scar, not anyone else's) on my facebook page as my "Hang 'Em High" and/or "Frankenstein" scar, so most people whom I know but whom I haven't seen in person since the surgery know what they're in for.
I will admit to a certain amount of vanity, but as a guy I figure there's always the "chicks dig scars" angle. Again, not to make light of anyone else's sitch, humor is how I deal with mine.
But I bet it's a LOT harder for women and our cultural obsession with females being "beautiful" as part of their self-image.\
Be well!
I think it is harder for women IMO. Women get old and grey, men get distinguished. Women get a scar and it's ugly, men get one and it gives them character. Anywho....
Public vs. Private. I have always tended to be an open book, heart on my sleeve, direct, take me or leave me kinda gal. For better or worse. Ain't going to change now. ;-)0 -
Scar TacticsBrianKrashpad said:scars
I have a relatively small neck scar, maybe just a few inches on one side. I made light of it (again, this is my scar, not anyone else's) on my facebook page as my "Hang 'Em High" and/or "Frankenstein" scar, so most people whom I know but whom I haven't seen in person since the surgery know what they're in for.
I will admit to a certain amount of vanity, but as a guy I figure there's always the "chicks dig scars" angle. Again, not to make light of anyone else's sitch, humor is how I deal with mine.
But I bet it's a LOT harder for women and our cultural obsession with females being "beautiful" as part of their self-image.\
Be well!
It's funny but this is something I've been thinking about a bit lately. My neck scar is not too bad and if the swelling will go down will be even more invisible. It mostly looks like another fold under my chin. But I am always willing to point it out if I am talking to someone about my cancer. It's the only obviously thing since I am no longer morbidly skinny. I try to combine pointing out that I had cancer but that I am cured or "all better" now. Kids particularly should know that bad things happen but also that we can do something about them.
But one thing I have been fairly upfront about is that my cancer was HPV-caused. As an athlete I am in contact with a lot of other men in the locker rooms (but not the showers, you understand) and I have been fairly out there that this is what HPV does to you (throat cancer) and that anybody who has any doubts should get himself to a doctor. Many of the guys I skate with on my several teams are younger and unmarried and in a heightened position to contract HPV. The estimation is that most everyone will get it at some point though not all will be cancer-causing and most will fight it off successfully. And the old guys my age are starting to run into all sorts of cancers. I guess I feel that I have a responsibility to help the next person if only to make it go easier on them.
What do you all think?0 -
HPVGoalie said:Scar Tactics
It's funny but this is something I've been thinking about a bit lately. My neck scar is not too bad and if the swelling will go down will be even more invisible. It mostly looks like another fold under my chin. But I am always willing to point it out if I am talking to someone about my cancer. It's the only obviously thing since I am no longer morbidly skinny. I try to combine pointing out that I had cancer but that I am cured or "all better" now. Kids particularly should know that bad things happen but also that we can do something about them.
But one thing I have been fairly upfront about is that my cancer was HPV-caused. As an athlete I am in contact with a lot of other men in the locker rooms (but not the showers, you understand) and I have been fairly out there that this is what HPV does to you (throat cancer) and that anybody who has any doubts should get himself to a doctor. Many of the guys I skate with on my several teams are younger and unmarried and in a heightened position to contract HPV. The estimation is that most everyone will get it at some point though not all will be cancer-causing and most will fight it off successfully. And the old guys my age are starting to run into all sorts of cancers. I guess I feel that I have a responsibility to help the next person if only to make it go easier on them.
What do you all think?
I think that's the position I would take too. Like sweetblood I'm kinda an "open book" type to begin with though.
In my case, my doc's position was that it could be HPV-caused, but since I'm married and not sleeping around, there was no real point in knowing one way or the other.
So honestly I don't know what the cause of mine is. Other than that it's not smoking.0 -
Hi Brian
Good subject, I am very open about my cancer and its type in hope that I can help someone else with the same cancer. To look at me after two treatments of radiation direct to the face it is very hard to hide it anyway. I did notices that people look at me in a funny kind of way sometimes, maybe wondering why I am so ugly or so thin not sure what one. But I really don’t mind because the people who know me know the kind of person I am and know the hardships I have came through. What really gets me down those is when I see young people destroying there bodies and doing thing that I know will someday give them cancer. The sad part is when you say something to them they ask you to stay out of there business because it will never happen to them.
All the best to you my Musical friend
Hondo0 -
hi HondoHondo said:Hi Brian
Good subject, I am very open about my cancer and its type in hope that I can help someone else with the same cancer. To look at me after two treatments of radiation direct to the face it is very hard to hide it anyway. I did notices that people look at me in a funny kind of way sometimes, maybe wondering why I am so ugly or so thin not sure what one. But I really don’t mind because the people who know me know the kind of person I am and know the hardships I have came through. What really gets me down those is when I see young people destroying there bodies and doing thing that I know will someday give them cancer. The sad part is when you say something to them they ask you to stay out of there business because it will never happen to them.
All the best to you my Musical friend
Hondo
I've had to bite my tongue (pardon the pun) many times, especially about smoking. I have one friend in particular who is kinda a "smokers' rights" fanatic, presenting himself as a poor oppressed minority. There are times I wanna slap him and yell "SNAP OUT OF IT!"
Unfortunately, I know that kind of advocacy probably won't do any good. One of my coworkers actually has both a degree in pharmacology AND is lawyer, yet still she smokes, as does a second coworker (who is also a drummer in 2 different bands I'm in). People gonna do what they gonna do.
Be well!0 -
open
Good topic Brian. I guess I'm both private and public but certainly open if someone asks. It's kinda necessary to say something in some situations. I'm still pretty slow eating so I feel I need to say something. Also, some places don't allow outside beverages, even water, so I tell them that I need it for medical reasons. The lady at the bowling alley seemed to think I was lying but let me keep my water bottle. I guess that's really about it though. Everyone who knows me knows but my neck scar is right on the crease and really not noticeable at all and I've got all my neck hair and facial hair back so they can't tell that way. I do get a few people who know someone I know calling when they get diagnosed and desperate for advice. I steer them here. Like you I like to help people feel less scared and slow down. I suggest alternative therapies to complement chemo and radiation. I'm always happy to talk about it with someone but I don't really volunteer the info. Cancer has been just a blink of the eye in my life and isn't who I am but just a small part of me. Not ashamed or proud of it. Thanks for the topic. It made me think.
Bob0 -
Good topic indeedadventurebob said:open
Good topic Brian. I guess I'm both private and public but certainly open if someone asks. It's kinda necessary to say something in some situations. I'm still pretty slow eating so I feel I need to say something. Also, some places don't allow outside beverages, even water, so I tell them that I need it for medical reasons. The lady at the bowling alley seemed to think I was lying but let me keep my water bottle. I guess that's really about it though. Everyone who knows me knows but my neck scar is right on the crease and really not noticeable at all and I've got all my neck hair and facial hair back so they can't tell that way. I do get a few people who know someone I know calling when they get diagnosed and desperate for advice. I steer them here. Like you I like to help people feel less scared and slow down. I suggest alternative therapies to complement chemo and radiation. I'm always happy to talk about it with someone but I don't really volunteer the info. Cancer has been just a blink of the eye in my life and isn't who I am but just a small part of me. Not ashamed or proud of it. Thanks for the topic. It made me think.
Bob
My husband of 24 years is HPV positive. Man, it is starting to come out of the woodwork!
We married older and, things being what they were, some things are catching up with us. Interestingly, as I am the communicator of the family (could you guess?), it is my husband who has shared his HPV status. Perhaps we can help spread the word. Our college aged kids know. As for the general public, outside of the hospital, I think people wonder why he isn't so "friendly". It is a reminder that many people have something going on and you can't always judge a book by its cover. Thanks for bringing this topic up!0 -
It has been evolving for meKareGiver said:Good topic indeed
My husband of 24 years is HPV positive. Man, it is starting to come out of the woodwork!
We married older and, things being what they were, some things are catching up with us. Interestingly, as I am the communicator of the family (could you guess?), it is my husband who has shared his HPV status. Perhaps we can help spread the word. Our college aged kids know. As for the general public, outside of the hospital, I think people wonder why he isn't so "friendly". It is a reminder that many people have something going on and you can't always judge a book by its cover. Thanks for bringing this topic up!
initially when the neighbors saw the banadages on my neck from the first biopsies I had to say something. It was natural to tell the truth and honestly it felt right and good to do so. While eating at resturants one sometimes needs more water or something chopped smaller and again it just seemed natural. Then while attending group meetings we talked about it in detail and again it seemed natural.
It has now started to feel not right in most settings because I seem much better, and the scars are not that visible. Around family I can bring it up but that is the point, I am the one talking about it. I just get the feeling healthy normal people generally try to avoid cancer conversation. It's not mainstream fodder and the reason we come here? Just thinking of how personal this disease can be.0 -
I agree...good topic of discussion.ratface said:It has been evolving for me
initially when the neighbors saw the banadages on my neck from the first biopsies I had to say something. It was natural to tell the truth and honestly it felt right and good to do so. While eating at resturants one sometimes needs more water or something chopped smaller and again it just seemed natural. Then while attending group meetings we talked about it in detail and again it seemed natural.
It has now started to feel not right in most settings because I seem much better, and the scars are not that visible. Around family I can bring it up but that is the point, I am the one talking about it. I just get the feeling healthy normal people generally try to avoid cancer conversation. It's not mainstream fodder and the reason we come here? Just thinking of how personal this disease can be.
Mark is a very private man. He does not draw attention to himself. Cancer diagnosis and the fight that followed brought more attention to him than he was accustomed. He has subtle remaining signs indicating that he has been trough something: thinner neck, not so noticable scars, a slight gurgle to his voice, some hearing loss, a spontanious head jerk (which he calls the herky jerky). I don't really think his physical appearance draws attention to the fact that he has been to battle. And I would have to say he does no soap boxing about his ordeal or HPV prevention. He would be happy to be in the wood work again.
That said, I am very proud of him. He showed tremendous strength and dignity as he went through a process that challenges both. I want to shout "This man is amazing!!! Do you know what he went through? Do you see how well he is doing?? Beware of this disease!!!" I speak of HPV, I have had my teenage son's vaccinated with Gardisil.
The dilemma of being private or public exists between he and I. I respect his style, and it is his experience, not mine. So only here do I so publiclly proclaim HE'S BEEN TO HELL AND BACK...AND LIVES TO FIGHT ANOTHER DAY...AND LOOKS PRETTY GOOD TO BOOT!!!!
Kim0 -
Public vs Privatesweetblood22 said:Chicks so dig scars, men in uniform, and accents.....
I think it is harder for women IMO. Women get old and grey, men get distinguished. Women get a scar and it's ugly, men get one and it gives them character. Anywho....
Public vs. Private. I have always tended to be an open book, heart on my sleeve, direct, take me or leave me kinda gal. For better or worse. Ain't going to change now. ;-)
I have to agree with Sweetblood on this one. Ever since my diagnosis in 1994 I have learned how to be brutally honest. Me...coming from a family of "ostriches" who like to stick their heads in the sand about any conflict of any kind.
I have come to view this as a Blessing because it made me priortize what is important to me. My husband, children, family and friends.
I don't advertise that I have brain cancer and am very cautious about who I tell. Need to know basis I guess. But I am quick to jump on the bandwagon about treatments, research, etc. if I feel I need to. I also wear my heart on my sleeve and am not ashamed of my emotions anymore. I laugh a lot, cry some too. Both are cathartic for my soul.0 -
Very Open
I have always been open....
We had an email group of family, friends and co-workers that consisted of a hundred plus names. We sent out updates freguently and after anything like scans, etc....
My wife actually started it, then I added to it, and started sending the updates and my thoughts and feelings later.
For me it was very therapeutic, I loved the communication as I worked from home nearly all of 2009 (the year I was Dx and Tx)...
I also had HPV derived cancer, have been married for 20+ years and both my wife and I have always been committed to each other, not an issue.
Just because it's HPV derived doesn't mean that it was sexually transmitted, they haven't definitly determined just how it is contracted or at what level of transference.
I'm not ashamed, nor am I embarrassed by having the cancer, HPV+ or any other aspect...""It is what it is", and I accept that.
Best,
John0 -
Having to eat in public it's harder to hide for me.Skiffin16 said:Very Open
I have always been open....
We had an email group of family, friends and co-workers that consisted of a hundred plus names. We sent out updates freguently and after anything like scans, etc....
My wife actually started it, then I added to it, and started sending the updates and my thoughts and feelings later.
For me it was very therapeutic, I loved the communication as I worked from home nearly all of 2009 (the year I was Dx and Tx)...
I also had HPV derived cancer, have been married for 20+ years and both my wife and I have always been committed to each other, not an issue.
Just because it's HPV derived doesn't mean that it was sexually transmitted, they haven't definitly determined just how it is contracted or at what level of transference.
I'm not ashamed, nor am I embarrassed by having the cancer, HPV+ or any other aspect...""It is what it is", and I accept that.
Best,
John
As I am going out and doing more things, I have found myself having to address more questions, so I do tell the truth. When you cannot eat what everyone else is eating, and people notice, they ask questions, so I answer honestly.
I don't bring it up first, but I just tell them I have a swallowing issue due to HNC radiation. I've also learned not to comment or joke about what other people are eating. Like I've had people say to me, "all you're eating is yogurt that you brought? No wonder why you're so skinny!" or "What's with you? Too picky to eat what everyone else is eating?" I would rather not mention it, but people seem to feel free to comment and say stuff, so I tell them why.0 -
Great topicsweetblood22 said:Having to eat in public it's harder to hide for me.
As I am going out and doing more things, I have found myself having to address more questions, so I do tell the truth. When you cannot eat what everyone else is eating, and people notice, they ask questions, so I answer honestly.
I don't bring it up first, but I just tell them I have a swallowing issue due to HNC radiation. I've also learned not to comment or joke about what other people are eating. Like I've had people say to me, "all you're eating is yogurt that you brought? No wonder why you're so skinny!" or "What's with you? Too picky to eat what everyone else is eating?" I would rather not mention it, but people seem to feel free to comment and say stuff, so I tell them why.
I think about this alot. I don't mention it to anyone unless they ask me or have heard a rumor. The treatment and subsequent side affects are a killer and people just can't grasp that we can't eat 12-20 months later. I have some close friends that I will tell about what is going on, but even my family forget what I went through and that I (we) still go through a tough road.
I heard a famous (some writer in NYC) HNC survivor say "we scoff at lesser cancers" because HNC is the toughest to get through. I don't scoff, but I know that other cancers are cut out, radiated, and then move on. No eating problems, no ear problems, no eye problems, so I keep praying for all of us here and the newbies who come to get back to 100% sometime, somehow.
I am happy to be NED at this time and I generally tell those who ask, "I'm doing great". I am, of course, but that's what they want to hear anyway. I'm not doing perfect, but I'm doing great. Each day is a great day as you all know, when compared to the first days after treatment.
So live on, tell all, or not, but treat yourself great. feel great and enjoy life, because that's why we went through this ordeal, right??
Keep pluggin you all,
Steve0 -
wowhawk711 said:Great topic
I think about this alot. I don't mention it to anyone unless they ask me or have heard a rumor. The treatment and subsequent side affects are a killer and people just can't grasp that we can't eat 12-20 months later. I have some close friends that I will tell about what is going on, but even my family forget what I went through and that I (we) still go through a tough road.
I heard a famous (some writer in NYC) HNC survivor say "we scoff at lesser cancers" because HNC is the toughest to get through. I don't scoff, but I know that other cancers are cut out, radiated, and then move on. No eating problems, no ear problems, no eye problems, so I keep praying for all of us here and the newbies who come to get back to 100% sometime, somehow.
I am happy to be NED at this time and I generally tell those who ask, "I'm doing great". I am, of course, but that's what they want to hear anyway. I'm not doing perfect, but I'm doing great. Each day is a great day as you all know, when compared to the first days after treatment.
So live on, tell all, or not, but treat yourself great. feel great and enjoy life, because that's why we went through this ordeal, right??
Keep pluggin you all,
Steve
This turned into a cool topic. Thanks everyone for your thoughtful responses!
Be well!0 -
Mostly I try not to discuss it.
Periodically, I will hit the wall over some issue, and then really cut loose and give someone an earful. They are usually so horrified, that I feel guilty for sharing. I've been dealing with this for almost a year and a half now, since diagnosis. I've kind of gotten used to it. My friends who lack 'cancer etiquette' will listen to my rant (or my really dark sense of humor), and then burst into tears.
Deb0 -
I think I love you hawk711.hawk711 said:Great topic
I think about this alot. I don't mention it to anyone unless they ask me or have heard a rumor. The treatment and subsequent side affects are a killer and people just can't grasp that we can't eat 12-20 months later. I have some close friends that I will tell about what is going on, but even my family forget what I went through and that I (we) still go through a tough road.
I heard a famous (some writer in NYC) HNC survivor say "we scoff at lesser cancers" because HNC is the toughest to get through. I don't scoff, but I know that other cancers are cut out, radiated, and then move on. No eating problems, no ear problems, no eye problems, so I keep praying for all of us here and the newbies who come to get back to 100% sometime, somehow.
I am happy to be NED at this time and I generally tell those who ask, "I'm doing great". I am, of course, but that's what they want to hear anyway. I'm not doing perfect, but I'm doing great. Each day is a great day as you all know, when compared to the first days after treatment.
So live on, tell all, or not, but treat yourself great. feel great and enjoy life, because that's why we went through this ordeal, right??
Keep pluggin you all,
Steve
Actually, I have 'scoffed at lesser cancers.' I'm not proud of it, but I acknowledge that I have done it.
Deb0 -
Hey Deb LewisD Lewis said:Mostly I try not to discuss it.
Periodically, I will hit the wall over some issue, and then really cut loose and give someone an earful. They are usually so horrified, that I feel guilty for sharing. I've been dealing with this for almost a year and a half now, since diagnosis. I've kind of gotten used to it. My friends who lack 'cancer etiquette' will listen to my rant (or my really dark sense of humor), and then burst into tears.
Deb
We are both Californians, we have to stick together! Keep strong, have fun, try hard, enjoy the day.
take care of yourself, you're special.
Steve0
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