"It Could Be Worse"

[LizH]

What I have noticed is thst for most people brain tumour means brain cancer. TUMOR means CANCER and they give you a death sentence. I always have to explain what ANs are, benign and slow growing but dangerous.

[DeniseSmith]

Scott,
I did and still do get those comments.   I have feelings similar to you on the whole subject.   I don't have any answers, I just thanks and walk away.  I am well aware of how I look, I don't look great, but I look better than I did after my surgery.

My recommendation to any and all newbies are to take pictures right after surgery, so down the line when you are depressed and feel like the recovery process is taking forever, you can see that you are actually making progress!!

Denise

[HeadCase2]

  What should one say when someone tells you they have a serious medical problem?

[msuscottie]

I just appreciated when people were honest and said "damn, that sucks, is there anything I can do?" There never really was anything they could do, but it was a nice, sincere response. I think the only thing I ever asked of anyone was prior to my surgery I asked my best friend to make sure my wife had everything she needed if things didn't go well with my surgery.

[Cheryl R]

There is an article today in the Des Moines Register that is quite good about doctors telling patients about their diagnosis and how it is done can make a difference in how the patients do.     Some of it is at Univ of Iowa where I go.               I can see a difference in my surgeon over the 5 yrs I have been an ANer.             He was much better with my new tumor this spring than 5 yrs ago.   
You can read the article on the www.desmoines register.com    and it is halfway down on the home page.   I know there is a way to put that link in this message but that is beyond my computer knowledge.   
                                                                    Cheryl R.

[Gennysmom]

LMR...that's fabulous...you know, I really appreciated my "alternative" friends who said the wacky things like that because I knew that was them....and what they said was heartfelt.  When my doctor thought my CSF leak nausea was from an air bubble that was in my head, I got the "See, you really are a blonde air-head", and, of course the "so you really do have a brain" comments.  I really appreciated those (from the right people) because they made me laugh and that was so good for me.    I guess I never really thought about the "it could have been worse" kinds of comments because I know it was said to make them feel better, not me.  Phyl and I had a huge conversation about that last night, the people who find out and come find you just to alleviate thier own guilt that you have a serious condition and how I have no use for them.   As for the "what to say", I appreciated the "I'm really sorry to hear that, is there anything you need or anything I can do?" responses.

Life is interesting, it sure sends one on some crazy paths.  I wouldn't call it "lucky", because then you have to define the norm to which "lucky" belongs....and I think for everyone it's different.   Am I lucky because my tumor was not malignant, or am I unlucky because I wasn't born to Hilton-style wealth?  Or am I unlucky because I had a brain tumor, but lucky because I'm not Paris Hilton? 

[Patti UT]

Scott,

   I appreciate your frustration with "the others" out there and their lack of knowledge on what to say or do. But really, all we can do is forgive them. Because you see, they really don't have the knowledge of how serious an AN is, or how bad the post op problems are. We look Ok to them on the outside, but they don't have any idea of the nightmare going on inside.  They don't "GET IT" and they never will. That is why we hve eachother on this forum and your other patient site. Before my surgery, people would minimize it. If you asked some of them, you would have thought I was going in to have a mole removed. I think it's the only way they know how to deal with it. It doesn't make us feel better, but forgive them we must, they truely don't understand.
  When people ask me how I am doing. I always have to take a second to decide, am I really going to tell them, or just say, "I'm fine, or OK" and not go into it. Saying I'm fine allows them to stay in the dark about my situation, so I have come to say something like, " I'm doing the best I can with the limitations I was left with after my brain surgery" This really makes them think. I don't have to go into it all, but I also am letting them know in a nice way, that it does suck.
  One thing I can say though is that I really do feel grateful to be here and that it could have been worse.  Everywhere you look, people are having difficulties in some way or another. Shortly after my surgery the Tsnumi hit Indonesia. I couldn't walk across the floor, eat, blink my eye, sleep was difficult, work, take care of my kids,  etc, etc. But when I turned on the TV, my situation was put into perspective very quickly. I know Scott, it's hard not to get down and feel bad for ouselves, and wanting others to "get it". But regardless of them saying to you, It could be worse" we really need to realize, it could be.  I may fall down, can't ski anymore, etc, but I'm not in a wheelchair. I'm here able to watch mu kids grow up, and that I am grateful for.
   Check out a new thread, "It's been a while" from LoriW. She posted a site where you can get T-shirts that say,
     I" HAD BRAIN SURGERY, WHAT"S YOUR EXCUSE"

  We can wear these and won't have to say anything to "the others"

Take care, and try to think more postivie.  you know that saying, It's a guy thing, or a girl thing.  Well when dealing with "the others",  keep reminding yourself, "It's a AN thing"

Also, I applaud your wife for affirming your feelings on the situation. It's sucks for her too. This thing effects the whole family.

Patti UY

[msuscottie]

There is a book I read a few years ago by Suzy Becker called "I had Brain Surgery, What's Your Excuse." It's a pretty good read.

[Boppie]

I have tried four times to put words to the way I feel about other people's reactions to my AN.  So far, my writing always translates to, "They don't know how profound loss of hearing and balance is for me".  As soon as I get some help with hearing stuff that happens on the "other side"  maybe I'll face the issues that are bothering me about my AN.  I am old enough to accept the fact that, "It could be worse".  I have my life.  I can still forgive.

Last week, a woman of age 75 asked me how I was doing.  I answered, "Well, I am here!"  She nodded.

[Cheryl R]

Even doctors who don't deal with AN's don't "get it" either.         One of the doctors at where I work told me before my 2001 surgery that he knew an acquaintance who had had AN surgery.   He saif he "only" can't hear on the one side and his face droops some,he's not bad off!       Another doctor has told me many times how courageous I am.   I know he gets it as he has had some hearing loss and had his own MRI then to make sure it wasn't AN.
                                           Cheryl R.

[tony]

I think the re-curring theme here is that most "well" people
rather struggle with what to say.
Frankly, some are too polite or embarassed (or uncomfortable)
Western cultures dont really handle death - or its threat
very well - 100 yrs ago when life expectancy was shorter
- or infant mortality higher - it was closer somehow - and most understood it
These days its quite rare - and people dont cope so well
I dont think you can blame them - its just not something
they are very good at
Best Regards
Tony

[Crazycat]

Yes, I've had had some wonderful, eye-opening experiences in this realm.

 Ã‚    I had been going deaf in my left ear for six years prior to my treatment. I was ridiculed, laughed at and even accused of being a hypochondriac by people  that I thought were my "friends". Even after my official diagnosis I was still laughed at: "Now he's really got something wrong with him!"
Even after showing them my MRI photographs with a tennis ball sized tumor. They laughed at me and virtually left me for dead, trying to make off with my personal property like a pack of hyenas.
 Ã‚  When I bounced back as well as I did from the surgery - because I had kept myself in good physical condition before my ordeal - they were a bit miffed or should I say "crestfallen" because I had survived - they used to laugh at me because I weight trained and jogged five miles a day. They underestimated me. I will eventually destroy them after what they did to me. Like the Minutemen vs. the Redcoats at Lexington and Concord, I'll be taking potshots at them every chance I get. It's like Ahab vs. Moby d***: "From Hell's heart I stab at thee!"

Then of course, there are the customary, garden variety morons that shout back in your face "WHAT??" upon any mention of hearing loss. That just makes me want to spit in their face or pile-drive my fist with brass knuckles down their gullet.

 Ã‚ I've also had the glib and empty-headed "You're lucky" or "It could have been worse" remarks as well.

 The scary thing about the reactions is the frequency of them. It's like human beings are weird creatures spawned from larvae in a hive and all think, say and react similarly to stimuli. It's like an "Outer Limits" episode that you cannot escape from.

 Ã‚ Yours in disillusionment and horror,      Paul    

 Ã‚ 

[Jim Scott]

I guess I'm a bit of an exception....or my friends are. 

All of my friends and acquaintances expressed both sympathy and real concern when they learned of my AN 'condition' and no one made any dumb comments, at least not that I'm aware of.  My wife (who became my 'spokesman' for a few weeks before and after my surgery) had to reassure a lot of these folks that (a) I wasn't going to die within the month and, (b) the tumor was not cancerous.  I think some still believe that I was a just few days from imminent death, pre-op.  I can't really change their perception or what some may have wanted to think but when the subject of my brain tumor comes up (less and less, lately) I always emphasize that it was benign and once removed, does not metastasize, although there is a small chance that it could re-grow, which is why I underwent 5 weeks of low-dose 'fractionalized' radiation treatments - to prevent any re-growth.   Most folks I know seem to understand this.  They are happy for my recovery and tell me so. 

I still receive a lot of comments from friends I haven't seen for awhile about how 'good' I look - which I kind of enjoy, even though I know they expect me to appear sickly and weak, which I'm not.  A very kind, elderly acquaintance (82 years old) told me last week that my rapid recovery was a 'miracle'.  I didn't argue with her because maybe it was.  I just said that I was very grateful for her prayers (I am) and that I had a very good surgical team and was in good health pre-op, all of which were absolutely true.  I'm fortunate to have very few post-op problems and what I do have, I don't talk about very much, except to tell people I interact with that that I cannot hear out of one ear, my left.  I have to tell people that sometimes or they think I'm ignoring them when they talk to me on my deaf side and I fail to respond.  However, in my normal course, I never mention it unless the situation makes it necessary. My taste isn't always 100% and my balance, while good, is probably about 95% of what it once was.  I often get a slight case of 'dry eye' late at night but I just blink a lot, which helps, and usually go to bed before it gets too bothersome.  My energy level is about the same as it was before I ever knew I had an AN and my mental attitude remains optimistic. 

While there is certainly nothing 'lucky' in having a tumor growing on your brain, imparing many important functions, the fact that mine - and most AN patients - was an operable tumor (and, in my case, removed successfully) was a blessing for me.  I think that when friends call me 'lucky', they mean 'under the circumstances'.    Like being in a car accident that wrecks your car but that leaves you only mildly injured or even unharmed at all.  Yes, you were scared, possibly hurt and lost your car but under those bad circumstances, you were 'lucky' not to be killed or severly injured.  It's a relative term.       

[tony]

You know I am only guessing here - but there are some angry people here (?)
I dont blame any of them - I got the pie - and the T- shirt !
All I would say is - if any of you really feel that angry
Get some help with it - you may have 10,20,30 years left on the planet
no-need to feel like that all the time
I am not saying its easy (or I am immune) - it isnt (and I am not)
But that amount of anger may consume you, harm you
If you want to chat offline - please do
Otherwise, I say again - seek solutions
Best regards
Tony

[Gennysmom]

There was a thread on here before this that was removed because it became hostile...I hope that doesn't happen here.  I guess my main reason for contributing to it is because, for me, having to tell people is an extremely stressful thing for me, and I can't count the number of times that I've had to provide emotional support for the people I'm telling rather than receiving it myself.  I know I talk about it, like my "were you expecting it" comment, with you all because what I wanted to say to the person that said that is something I would NEVER do.  I don't want to talk about it with non-ANers because I don't want them to feel bad or worry about what they said.  I feel like this is a safe forum for me to say stuff I might not otherwise, and it's totally meant in a way to de-stress.  I know for the most part that people and their statements are very well meaning....and I am appreciative of that.  To be honest though, I feel like I'm now stuck between a rock and a hard place...I tell everyone who asks "how are you" that I am "doing pretty well", so what's happened now is that my co-workers expect that I should act and behave like I did pre-diagnosis/surgery and are taking the differences with negative intent...my cognitive function and balance keep me from doing things exactly like I did....and I'm being pegged as anti-social, non-teamwork oriented, etc. (got hauled into the boss's office last Friday).  Dealing with non-ANers comments is something we all have to deal with...good and not-so....and sometimes I need to talk to people who understand my reality so that it doesn't get me down.