What can I say to people?

CMGragain

This is a spin off of another thread.

Most of you know I have stage 4 metastatic cancer.  The tumor in my eye has become quite obvious in the past few weeks.  People I meet often ask me if I have an eye infection.  The tumor is sometimes the size of a plum under my eye.
If I say, "No, I have cancer." they are sometimes shocked.  I don't want to upset people.  They often come back with "I pray that you'll beat it."  It isn't curable any more.  We are treating the symptoms, but there will be no miracle cure.
What should I say?

holyguacamole79

I would simply say "thank you for the prayers." 

JCbride2015

If you don't want to tell them you have cancer, you could try, "It's not an infection, but thanks for your concern."

larrygaga

JCbride2015. I think that's a good way to explain/not explain. 

I would tell people who were rude enough to ask that it's an alien egg injected into my face and it could burst out at any moment. I find humor helps me through tough times, but I realize it's not for everyone so sorry if I offend you. 

IrishPirate60

"I've taken in some homeless spiders. Do you want to adopt?"

QueerFemme

CMGragain said:

This is a spin off of another thread.

Most of you know I have stage 4 metastatic cancer.  The tumor in my eye has become quite obvious in the past few weeks.  People I meet often ask me if I have an eye infection.  The tumor is sometimes the size of a plum under my eye.
If I say, "No, I have cancer." they are sometimes shocked.  I don't want to upset people.  They often come back with "I pray that you'll beat it."  It isn't curable any more.  We are treating the symptoms, but there will be no miracle cure.
What should I say?

I think it's ok to make people a little uncomfortable.  Cancer isn't a dirty word, and it's ok to say that you have it.  This isn't your cross to carry, so to speak, and you don't have to put it out there, but, I do think that saying it out loud removes some of the stigma. 

If they come back with the prayer line, you can just say thank you, or say "well, we are past that point, but thank you for thinking of me anyway" or some variation thereof. 

lurkergirl

I don't know what to say.  I'm still getting over the shock that anyone thinks it's okay to ask you about it.  What the hell, people?

FWIW, I always say prayers for knotties who ask for it or mention that they are going through something difficult.  I will definitely pray for your comfort and well-being, and the strength to not smack the jerks who feel compelled to comment on your condition.

CMGragain

Thank you, ladies.  This is a small western city, and I don't want to upset people.  If I were still back east, I could snark all I wanted.
My son loves to cosplay, and specializes in weird makeup.  Once he put on a prosthesis that covered his eye, then forgot he had an quick errand  to do at the grocery store.  He walked in wearing his monster make up.  A child noticed, and his mother said, "Oh, don't stare at that poor man." 
I'm starting to look like he did!  Oh, well.

theartistformerlyknownas

Does it really matter if people know it can't be cured? If these are just random strangers on the street who are rude enough to ask about your eye in the first place, I'd probably just smile and nod and walk away. Anyone closer I might say something like "I'd appreciate prayers for better treatments of all cancers" or something to kind of deflect it away from myself.

CMGragain

lolo883 said:

Does it really matter if people know it can't be cured? If these are just random strangers on the street who are rude enough to ask about your eye in the first place, I'd probably just smile and nod and walk away. Anyone closer I might say something like "I'd appreciate prayers for better treatments of all cancers" or something to kind of deflect it away from myself.

In a town like Grand Junction, CO, people do know each other.  The check out clerks often ask, as do church friends.  They mean well, and I hesitate to shock them.  Get well soon is not a good thought for me.  With Halloween coming up, I should dress like Quasimodo!

MairePoppy

Even if they are well intentioned, it's okay to make people feel a little uncomfortable for asking a personal question. Maybe they will think before they do it to the next person. It's also okay to say you don't want to talk about it. Your choice.

I would assume that those who say they will pray for you are sincere, so thank them for that. By the way, I'm praying for you : )

CMGragain

Some people have actually asked me "Why can't they operate and cut it out?"  Uh, no.  That would remove half of my face along with my eye.

MairePoppy

Oh my! That's very intrusive. I think a frozen, speechless, stare is the best answer to that question. Even if it's a small town in the Midwest.

Jells2dot0

I actually can't wait to tell people about my cancer now that my treatment is over. My treatment has left me extremely depressed about my self image. I'm extraordinarily self conscious right now with the bald head and being 30lbs heavier than I was in July. So, when I say "cancer" it makes me feel better about what others may be thinking about me. I'm usually not the type to care what people think, but for some reason, it REALLY bothers me that I look so different, even if there is a reason for it. I struggle to go out in public and I am scared to death to go back to work. I guess that makes me shallow, vain, and petty, but I need to get past this somehow.

southernbelle0915

I think if people ask what it is, you can tell them the truth. "No, it's not an infection. It's a cancerous tumor." If they're asking and looking for an answer, I don't see why said answer would be upsetting to them. 

If they say they'll pray for you, I'd just say "thanks". 

If they ask further questions like "why can't they operate and cut it out?" then I see no problem saying, "unfortunately, that's not an option. How about that bean dip?"

KatieinBkln

CMGragain said:

Some people have actually asked me "Why can't they operate and cut it out?"  Uh, no.  That would remove half of my face along with my eye.

I am just...so embarrassed on their behalf! What a thing to ask. Curiosity is normal, but it shouldn't be so difficult to understand that the person experiencing the tumor is perhaps NOT the one to grill with your questions on the matter. It's called Google, people.

I'm sorry you have to deal with people's insensitive questions on top of the illness itself. I agree with PPs that you're allowed to make people a little bit uncomfortable. They were the ones who violated the social contract by asking a rude question, so you don't have to bend over backwards to be overly polite yourself. However, I understand not wanting to spend emotional energy on sticking it to them--I like Lolo's idea of simply saying, "Oh no, it's not an infection" and moving on from there. You're going to get people who pry further, though ("So what is it then?"). Then you could perhaps do the icy stare and repeat: "It's not an infection" with all the steel you can muster. (Subtext: this is not up for discussion).

themuffinman16

I would never ask about your health if you had not brought it up. Bringing it up, themselves was immensely rude on their part, and in situations like that, i would not care if I made them embarrassed for mentioning it. 

    No one could possible know what you are going through, and I guess that is where we fail at being comforting.  But as far as your friends go that you are sharing your  ordeal with, could you tell us what you find is the most comforting thing to say or do for you? That way, we could learn from you and be more compassionate to people going through this terrible disease. I know saying 'Get well, or feel better" are about the worst things you can say. I just wish I knew what was helpful or soothing. And if we all knew from your perspective, maybe we could make a difference in how we treat people who are going through this. I hope I am not being too pushy. I just wanted to know so we could be more helpful to our loved ones.

thisismynickname2

I think that people may just be surprised, and blurt what they're thinking without applying a mental filter. I think it's perfectly appropriate to say it's cancer. Speaking as a Midwesterner, it's often nothing put pure concern: "Goodness, what happened?"  

If they probe further, I think it's perfectly appropriate to kindly say you don't wish to discuss the matter. If I blurted the question and got that response, I'd surely feel too awkward to say anything more.  

I'm sorry you're going through all of this. 

CMGragain

Stupid things about my tumor:  When I roll over at night, if my face bumps the pillow or mattress, it wakes me up.   I can't wear eye make-up, except for eyebrow pencil to fill in where I'm missing half my eyebrow.  My clothes are too loose.  In the morning my eyes are glued shut with the murky tears that are the result of the useless radiation treatment.  There is a bald patch in the back of my head from radiation, about 4" in diameter.

OK, now I got that off my chest!  No pain.  Just annoyance.

When somebody asks me "How are you feeling?"  I answer "Hanging in there."

CMGragain

Jells2dot0 said:

I actually can't wait to tell people about my cancer now that my treatment is over. My treatment has left me extremely depressed about my self image. I'm extraordinarily self conscious right now with the bald head and being 30lbs heavier than I was in July. So, when I say "cancer" it makes me feel better about what others may be thinking about me. I'm usually not the type to care what people think, but for some reason, it REALLY bothers me that I look so different, even if there is a reason for it. I struggle to go out in public and I am scared to death to go back to work. I guess that makes me shallow, vain, and petty, but I need to get past this somehow.

I soooooo understand!  I've lost 35 pounds.  People compliment me!  No, I wasn't dieting!

Jells2dot0

@CMGragain‌ I absolutely HATE drawing in my brows. My left brow stayed most in tact, but my right brow is mostly gone. I always draw it in wrong- too high, too low, too thick, too much arch. Ugh. Can't wait for that to grow back.

Spelling

loveislouder

I'm a bit snarky, so I'd probably answer with "What are you talking about?" then whip out a mirror and a "OMG!! I never noticed that before!!"

themuffinman16

Sending both of you ladies some hugs, right now.

princessleia22

I have a very noticeable 13" long scar on my back (about 1" wide) from spinal fusion surgery (plus 3 additional surgeries due to staph infection).  I used to hide it like crazy, even finding bathing suits that had full coverage in the back.  Then I decided that I had been through a lot and earned that scar. So, I started wearing stuff that may show it a bit. And people do often ask about it. I have two standard responses, depending on the person asking and my mood right then.

First response is the truth... "I have scoliosis, had 13 vertebrae fused in my spine, the surgery failed, I had a major staph infection for a year that resulted in 3 more surgeries, it all left me with chronic pain, but I'm dealing with it and my life is okay."

Second response, if I don't feel like getting into it all is... "I went skydiving, the parachute didn't open, I shattered my spine, but I'm so lucky to be alive and can't wait to jump again!" I love watching the responses people have to this one.

Sometimes, if I really want to bother someone and teach them a lesson, I go with the truth, but with the full graphic version.  Like mentioning the time my back incision split open and had green puss oozing out.  Yeah, they don't ask any more questions after that... unless they are 5 year old boys who love that type of stuff.

But, I don't think there is really a one size fits all explanation or response. I totally understand not always wanting to get into the truth with everyone or see that pity look on people's faces (my truth response always gets the pity look, even 12 years later). With some people, mainly those closer to you, the truth is probably the correct response.  And I don't think there is any way to say it without getting the pity look and the uncomfortable situation.  People aren't comfortable with sickness or cancer or death. And there's nothing you can really say to make them feel okay with it.  All you can say is that you are dealing with it and you appreciate their warm thoughts.

But for random strangers, I'd come up with a fun secondary response.  Depending on how it looks, maybe say, "I got into a bar fight.  He got a good first punch in and gave me a swollen eye, but you should see how bad he looks today!" or "I was abducted by aliens and they planted a baby in my face that is almost ready to hatch!".  Just something outrageous and crazy that will shock them... they won't ask any more questions after that.

Or it is Halloween week... this week I'd totally have fun with it and play it up.  Add makeup and fake blood and take advantage of it!  All day long, every day!  When I was a kid, I had to wear a horrible back brace, which had all these air holes in it. Every Halloween I took advantage and had knives or pencils or whatever sticking out of the holes... nobody else had a built-in frame to hold stuff like that, so I used what I had and made it rock.  And I totally freaked out people by jamming full length pencils into my stomach, which were really just sliding down into the brace. But, they it allowed me to turn that horrible brace into something good and fun on occasion. So, try to have some fun with the bad situation. 

Inkdancer

Prayers are all they know how to offer. I would thank them for thinking of you and move along. They aren't trying to be malicious.

CMGragain

Jells2dot0 said:

@CMGragain‌ I absolutely HATE drawing in my brows. My left brow stayed most in tact, but my right brow is mostly gone. I always draw it in wrong- too high, too low, too thick, too much arch. Ugh. Can't wait for that to grow back. Spelling

I hate to tell you this.  My eyebrows grew back five years ago, but all the hairs I used to have plucked were the first ones to grow back.  I was a unibrow lady.  Ugh.

AddieCake

I'm so sorry you are going through this.

doeydo

Sorry you have to deal with this.  I would probably just be brief like "It's a cancerous tumor" and then if they continue on just say "Thanks" and change the subject or give the tight-lips move (I do this thing with my face that I call the tight-lips, it is not quite smiling but it is like a thing I just do when passing someone on the street, leaving the cashier though I always say thank you, etc.) and leave.

NYCMercedes

You're in my prayers.

JennyColada

I know this totally isn't the same thing, but I have a pretty large birth mark on my inside leg. It's VERY dark brown and I have had multiple people think that it was dog poo (gee, that makes me feel really pretty!). I was very self conscious about it for YEARS, going so far as never wearing anything that didn't cover my legs fully (even in the dead of summer!). While I'm still not 100% comfortable with it, I feel like people don't really point it out much anymore.

BUT, this has really made me understand someone else's situation, and as a result I never ask about any weird marks or bumps or anything really. It's just not my place, and I hate the idea of making someone feel how I did with just a simple question. It was something that my ex mentioned to me after the first time we'd slept together (he has something with some blood vessels in his arm and neck that give him a rash-like appearance through most of his right arm and his neck and the left side of his chest): he asked me why I didn't ask him about his skin and I told him that I just didn't care. It is what it is and if he wants to tell me what it is then he can tell me, but if he doesn't want to then I'm going to respect that. I think I got major kudos about that from him.

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sophhabobopha

Ugh people. I have a birth defect,  schizencephaly, for you curious folks. It's a lot better than most people with it, I just hold my right hand a little

wonky. At work people always ask if I broke my hand. I say,"No, I'm disabled. Thanks for pointing it out!"