The insensitivities!!!

Terri B · 01-30-2009, 01:15 PM

I think I've heard talk here about the insensitivities of "non-cancer" people. Well, I'm starting to feel it.

At the beginning, I welcomed my friends and co-workers "cheering" for me throughout my surgery and chemo. "you can do it" and "you're almost done!" and "you are sooo brave" (ha)

Well now, I have 10 rads left and I get asked "so, are you almost DONE?" Done? DONE??!

I try to explain, "well no, the residual effects will continue for about 6 more months, I still have herceptin every three weeks til jun, I still have this scan, that scan blah blah blah"

I'm gonna hold my breath until I turn blue.

(

freyja · 01-30-2009, 03:03 PM

I have to remind myself, it's not that they're insensitive, they're just inexperienced and uneducated. Mostly what it comes down to I've realized in the process of continually explaining it to my little boy, is that things that are unfair are unacceptable and hard to understand.

Terri B · 01-30-2009, 03:13 PM

Boy Celeste, don't we all know that first hand?

It just frustrates a girl sometimes, yah know? When you ask "how are you?", I say "I'm fine"

F - Frustrated
I - Irritated
N - Neglected
E - Exhausted!!

Can I get a HALLELUJAH??!?!?!

dhealey · 01-30-2009, 03:38 PM

I am always asked " so are you cured" when I answer no I'm in remission" They look at me weird and I have to explain when you are herceptin positive there is a great risk of it coming back. Our I get told "my mother only had to have a mastectomy and she is fine. Why are you putting chemicals in your body." I get tired of the questions, but then I remind myself these people have no clue!

Becky · 01-30-2009, 05:07 PM

I think I've told everyone that I got Herceptin alone kind of later - 4 months after my last chemo and 2 months after rads were done. I thought I was done - scared out of my mind but DONE. Then I was able to get Herceptin - So, I went to my boss to say I was going to work but I had to get the Herceptin. I even brought all the articles about the great results of the trial.

He said - "Are you going to die?" I almost died! But I said "yes, and you are too. We will all die one day".

And they think we are dazed and confused from chemo. Humpff!

Laurel · 01-30-2009, 05:17 PM

Well, gals and guys, I know what you mean. It seems that because I have hair, eyebrows, and eyelashes that now I am to be FINE. "You beat it!" is what they say. I do not bother to explain that my future is not a certain thing, not that it ever was, but that it is perhaps less certain. Did that make sense?

I stopped wearing my wig and my hair is manishly short. It serves as a reminder to everyone that I just went through chemo, so for now I suppose I am allowed to speak of my cancer experience, but not for too long, too much, or too often. People in my office were surprised to hear I am having surgery on Monday (I am getting my expanders exchanged for big balls of silicone! Yeah!). Well, why does she need more surgery?

Ah well, I can only hope none of my friends and co-workers experience the BC blues. May they always remain ignorant of our deep suffering, loss, and fears.

I do think this is something that will ease with time as we move onward in our lives. Here's to hopin' anyway!

Rich66 · 01-30-2009, 05:44 PM

yeah..my mom's radiologist who was part of the team that advised aginst her getting adjuvant chemo told her at her last rad tx "It's a cured cancer!"
Now with mets, somehow even google can't locate that guy. Now my Dad's urologist is saying the same thing to my Dad regarding his PC.
At what point does "thinking positive" become simply misinformation?

chrisy · 01-30-2009, 06:13 PM

I've heard some doozies...and how I respond depends on how well I know the person and to a certain extent, what I think they want to hear. Or what I feel like saying.

Most people say that stuff out of ignorance, combined with actually wishing you well and sometimes with a dash of wanting to think it will all be okay because they themselves are fearful.

With casual acquaintances, I see it sort of like most people say "How are you" but they really mean "hello" and expect to hear "I'm fine". So I say that. Sometimes even when I know they want to hear "the truth", if I don't want to discuss it, I just say "I'm fine". or if I'm feeling really wacky, I'll say "still above ground!". That usually leaves them wondering!

Sometimes, if they sincerely ask me one of the hard questions, like "are you cured", I'll give them the best honest answer I can without breaking everyone's heart.

Seriously, I've had some very good friends say some really ignorant things...like how they always wanted to die before their spouse, too. Although that one shook me up pretty well, right after my Stage IV diagnosis, I really had to chalk it up to I know she meant me well and was coming from a place of love...and then something really stupid came out. I even made a pact with a group of very good friends who were worried they'd say the wrong thing that if they ever DID say the wrong thing, I'd just respond "I know you said that out of love". Because it would be true.

Mary Jo · 01-31-2009, 12:04 PM

Like I always say.........until "those" people walk a mile in our shoes they will never understand what we go through!" To them......we look fine...treatments over.......it's over!!!!!!!!! We know better but they don't get it.

Mary Jo

ElaineM · 01-31-2009, 01:17 PM

We somehow have to try to forgive the folks who "don't get it" about cancer and especially the kinds of cancer that require long term care.
The media may be partially responsible. We all see and hear various public figures talk about having cancer treatment for a few months, what they went through and now they are "cured". Maybe the general public thinks that is what cancer is all about with modern medicine.
I think back to the time before my diagnosis and remember my friends and relatives that got cancer before I did. I didn't really understand what they went through either.
That helps me cope with the folks who get impatient with me when I say I have a medical appointment for this or that or I can't do everything the same way I did things before. When I have to take some medicine and someone says I am putting poison in my body I just tell them the poison is keeping me alive. After 10 years I have heard almost every comment folks are likely to make and I can come up with an answer to almost any kind of comment from well meaning folks.
I pray those folks never "get it".

swimangel72 · 01-31-2009, 05:02 PM

I like your "FINE" answer to all the clueless people Terri! You go girl! People are shocked when I tell them I still go every two weeks for an infusion of Herceptin - because I look and act healthy (and truly I feel healthy except for this stupid cold and bone aches now and then). Fortunately I have excellent support where I work because so many women there have already been through BC. It makes a huge difference - they truly know what's going on, just like all of you and I'm so grateful for your support!

Soccermom · 01-31-2009, 08:20 PM

I think Elaine hit the nail on the head...one ad that really gets me is the one where the guy/gal says,"I am ready to begin my chemotherapy", like they are going out for dinner or a cruise! They are smiling for crying out loud and their hair is neatly coiffed and sometimes they are even painting!!(no offense ,Flori!)
Then it says in the fine print, (which no one but a patient ever reads)..." Important product safety information
Ruptured spleen (including fatal cases), serious allergic reactions, and a serious lung problem called acute respiratory distress syndrome have been reported. Call your doctor or seek emergency care right away if you have abdominal or shoulder tip pain, shortness of breath, trouble breathing, a fast rate of breathing, or any allergic reaction. The most common side effect of this injection is mild to moderate bone pain. If you have any questions about this information, be sure to discuss them with your doctor. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088".
Sheesh, its no wonder the general public thinks we should all be running marathons immmediately after finishing treatments..
Sorry, but thats my 2 cents...Terri my sincerest apologies for the the insensitivities of others!!
The next time someone asks you if your DONE...just tell them "no, I think I am just medium rare right now!"

HUgs,Marcia

Sherryg683 · 01-31-2009, 09:07 PM

The remarks that I have gotten that irritate me the most are "all you have to do is remain positive" and "you must have faith that you will be healed". I actually had one woman at church tell me that if I didn't have enough faith, God couldn't heal me." I use to nod and agree, now I've started saying, "so if I don't beat this, it's my fault for not being positive enough or having enough faith in God". Sorry, it doesn't work that way..sure being positive and having faith will help you through your battle...but it's not a cure. I've seen too many faith filled, positive people die from it. The next thing that bothers me is that most people don't seem to think breast cancer is serious. I've heard all about Aunt Mathilda and Grandma Mable that had breast cancer 20 years ago and is still doing fine. I then feel I have to explain the different stages and that all breast cancer is not the same. The "we all could get hit by a bus "remark is also one that sets me on fire. My usual reply is "if someone told you that you had an 80 percent chance of that bus hitting you, how would you feel". Sort of puts it into perspective for them. It's always just easier to say "fine" also. Every now and then I will find someone who is really sincere in wanting to find out about what I'm going and been through, but most of the time I feel people are just trying to make small talk and don't really know what to say..sherryg683