ANA Discussion Forum
AN Community => AN Community => Topic started by: msuscottie on October 16, 2006, 01:40:24 pm
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1. "It could be worse"
2. "You're very lucky"
After being diagnosed with a life threatening brain tumor in 2004, these are the two things I heard over and over again from people. Now ... I'm fully aware that people really don't know how to handle that kind of news and that they don't really know what to say, but I heard these two things over and over again and I'm still hearing them. I appreciate encouraging words as much as they next guy, but to imply that "I'm lucky," or that it "could have been worse" didn't and doesn't really make me feel that much better. Luck and/or the severity of my diagnosis is all relative. Sure, I'm lucky that they found the brain tumor before it killed me, but no, I'm not lucky to be 1 in the 100,000 people that have this kind of brain tumor. Sure, it could be worse if I was dead, but really, it could be better if I was healthy like 99.9% of my friends are. Do I take solace in the fact that at least I'm not dead? Not really. I understand that people mean well, but the best reaction I ever got from anyone was once from my wife who just said "yeah, it really sucks, but what are you going to do?" That, to me, was honest. And I appreciated it.
Does this make me pessimistic? I don't really think so. Maybe I'm just a realist. If someone runs me over with a car, it really sucks. But I refuse to think I'm lucky that at least it was a car and not a truck that hit me. When you were diagnosed what did people say to you? Did anything help? What was the worst thing someone said to you?
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Interesting question, Scott. Mostly no one says anything to me.
"How are you doing?" they ask.
"Oh, hanging in there." I say.
"Ok, that's good." they answer.
Since it's "benign", and I've had treatment, then as far as they are concerned, it's over, I guess. I told my husband yesterday that I would like NOT to dwell or think about this anymore, but it's literally "in my face." I have facial numbness, a salty/metalllic taste, a cold nose (really!), hearing loss and tinnitis that are constant reminders that I have an Acoustic Neuroma brain tumor in MY HEAD!! How do you forget about it??
Yeah, I kind of like your wife's remark.
Sue in Vancouver
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I like your topic. People need to have their feelings validated and what folks tend to say, while well-intentioned, belittles your appropriate feelings. Your wife's response, on the other hand, validated them without wallowing in it. Kudos to her and to you for bringing up an important topic. I cannot count the times I have heard someone tell someone else "not to cry" Bunk, cry if you need to. Life is joyful, sad, hard, scary, beautiful. Good things happen to us, bad things happen to us. We don't need to compound our pain by denying it.
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What I find interesting are the people who use my diagnosis to self-diagnosis themselves. Asking how I knew, what was wrong, what kind of symptoms, what made you go in for the MRI? I just feel like telling them isn’t a cold people; it’s not contagious!
I feel like people don’t take this as serious as what it really is. Yes, it’s benign but to me that doesn’t diminish the severity of it all.
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My favorite was "so were you expecting that?". Nothing else, that was the only statement. In my head I said, "yes, I've been planning to have a brain tumor for YEARS". It's such a hard thing to tell people....I can't imagine having to say the words "terminal" or "metasticized" or the like, so I'm grateful for that, but.....at least I can say that it has turned me into someone who can probably say a pretty appropriate thing if someone gave me the same kind of news.
The issue I'm currently dealing with, at 3 1/2 months out, is people's assumption that I'm all fixed now. My co-workers are turning on me because I'm not the same person anymore, and I think they think I'm lazy, anti-social, and not a team player. They just don't get that I can't do things like I used to anymore. I wish I could put them through a machine like the one they have where you can see what it would be like to drive drunk, so they could see the world through my eyes and my brain.
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Oh Kathleen, that's almost funny! We're you expecting that? What an odd thing to say. Maybe you should say that answer out loud. I love it.
Sue
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Most people said the right thing to me..........THEN, the day before surgery one of my obviously naive co-workers said to me: "You will be fine. I had my wisdom teeth out a year ago and I woke right up."  ::)
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I, without knowing why, felt headaches and tiredness for a long time. I was a seventh grade science teacher. I thought my crummt, always tired feeling was because of my young daughters and full-time job. I often dreamed of not having to work. After my surgery my very good friend whom I know meant no harm said, "well at least you got what you wanted out of it." Meaning I am no longer a teacher. Patti
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Am I unique??  I was diagnosed almost 5 years ago and have been 'wait and watch' since then.
The only person I chose to tell was my wife...and I only made my grown up 'kids' aware 6 months ago when there was the first indication that the AN had shown signs of enlargement and  because I thought treatment might be iminent albeit I am still continuing with 'wait and watch'.
I was still employed in a high profile professional occupation when diagnosed and retired (on age grounds) in 2004 some  2 years after diagnosis.
It has personally been the best decision for me as I have not had to contend with any such problematic situations with work colleagues, relatives, neighbours and friends albeit it was tough in the early days re 'concealing' my balance problems and single-sided deafness which I have worked hard to counteract.
Maintaining a sensible diet, plenty of walking / regular exercise including riding my motorcycle and the love and understanding of my remarkable wife has to date enabled me to lead a fairly normal lifestyle.
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The most interesting comment I had I heard via my sister. She told me that there was a rumor going around that I had a brain tumor and was going to die. I decided to call one of the people that thought that and let her know it wasn't true. She was relieved to hear that.
I agree with you, Scottie, I don't care that it could be worse or that I should feel lucky. I already felt lucky in my life before the AN. I'd rather use my luck to win the lottery, thank you very much. :-)
Jean
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Most people will experience a serious health problem during their life. IMO it really sucks when you are young!. Us older chaps have had "our day in the sun" sort of speak and we just appreciate a little longer in this world. I find that 95% of most people don't know or understand any serious operation, life threaten or not till it hits close to home. I am thankful that I had insurance, thankful I am still breathing, thankful I can still work, thankful I had a loving and caring wife that made this much easier than it was. Anything else is secondary.ÂÂ
I like to throw people when they as me how I'm doing. My response is:  "I still breathing" A pause: then I say, everything else is secondary! that conversation ended.
I can feel sorry that I had to start working at 13, had no dad to guide me, teach me, and protect me from the evil world. Missed what really goes on in the teen years, didn't have the golden spoon and the yellow brick road to College or a well off family to baby me till I'm 40 and Little job opiniontunities where I grew up. Then, get lucky by having a problem that pledged me for years wondering why I couldn't get to the top of my mountain. No, none of this is bad luck, I am really lucky, you know why. I made the American dream, I'm on easy street, Have wonderful marriage, a wonderful child that has quadrupled my marks in society, First in my family and my wife's family to graduate from college with a PhD. So, you see my little petty problems are nothing compared to the big picture. Everyday I see somebody that's got it worse off than me. Yes, I am Lucky or grateful!!!! and "it could be worse" a lot WORSE!!!!
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I kept hearing...You're kidding right. Like someone would joke about that.
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Yea I got the same thing..."you're kidding right," i mean i was shoocked and didnt know how to answer them. For reals, like someone would joke around about having a brain tumor.
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I do actually feel lucky that I caught it early, grateful that I came through well. I should say that those comments would make me a bit mental. Fortunately, most of my friends are one stroke shy of being totally nuts so I heard great comments. My favorite being...
"So what are you going to do with all that new space in your head"
That, I must say, was an original and I got a good laugh at that!
Another...
"I watched the DVD of your surgery and I'll be damned...you really do have a brain!"
It is possible that since my friends were aware that I grew up in funeral homes and know me quite well, they stuck with my sense of humor and got back at me for all the "New York Italian" comments I tossed their way. We had a grand old time.
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There are 2 people I accepted the "it could be worse" comment from and they both are living with malignant brain tumors. Now yes, compared to them, my situation was a whole lot better.
Conversation I had SO many times in the months right after surgery....
random person "How are you feeling?"
me "I'm doing okay"
random person "But you look good"
Uh, really, when I looked in the mirror last my eye was wide open and didn't blink, the whole right side of my face doesn't move and my smile is more than a little crooked.
At my last facial therapy appt my face is a 59/100...so how can people say I look normal? I still smile crooked and when I talk one side of my face does not look like the other. I guess all those well meaning people would rather lie than be honest and say Yes I can see that you are different. Who do they think they are kidding? I know the truth, so it must be them!
The one thing I have learned thru all this is people say things to make themselves feel better and to reassure themselves that they are okay! Very few actually want to make you, the AN survivor, feel better.
Besides, it could be worse.......... 8)
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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.
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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
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What should one say when someone tells you they have a serious medical problem?
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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.
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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.
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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?
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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
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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.
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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" ;D  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.
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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.
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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
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Yes, I've had had some wonderful, eye-opening experiences in this realm.
  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.
 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.
 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.
 Yours in disillusionment and horror,    Paul  ÂÂ
ÂÂ
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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.
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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
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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.
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I have to agree with Tony. There seems to be some anger no doubt brought on by being hurt from things people have said. The interesting thing here is, I am hearing (reading) that many of you want the recognition of having gone through (and still dealing with) such a serious ordeal. But at the same time, if everyone was tip toeing around you, treating you with kit gloves like there was something wrong with you, I don't think you would care for that either.
Overall, I think when people have made deep scars by how they treated you, or what they said, like in Pauls case, they need to be confronted, in a nice way, to let them know it hurt you, so that you can forgive them. Otherwise these things will continue to fester and make you even more sick. Getting even si not going to make the AN problem go away. I'm sure you all are familiar with phycosymatic illnesses.
Right before my surgery a freind gave me a book to read called, "You can heal your life" by Louise Hay A pretty interesting book about how your thoughts create many of the physical problems we have.
Know what it said about tumors??? "Nursing old hurts and shocks, building remorse" interesting?hhhmmmmmm?????????
for tinnitus it says "refusal to listen, not hearing your inner voice, stuborness"
Of course I don't take any book I read ver batim, but it definetely gives one something to think about
Patti UT
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Yes it sucks very hard and still have trouble comphrehending what actually happeded. All of my family and friends have been very sympathetic and caring, but I'm still angry. From what I read, I was very fortunate. It's been 7 weeks since surgery and other than being DEAF in the AN ear and a loud contant ringing, I'm contantly getting better. I have daily bouts with the balance and dizziness problems, but I see it improving. I returned to my office job after 4 weeks. At first it was tough, but now I'm doing pretty good.
I have lost two of my more favorite pastimes; bowling and playing the sax. Bowling is self explanitory, but I haven't played my sax since I was diagnosed. Nothing is the same any longer. What I do hear is distorted so why throw salt into the wound? I've shared this personal issue with a few people and they say, "Just start playing again; you'll be fine". Yea right. Maybe some day, but I have some issues to work out on my own.
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I hear ya (er....read ya) TT
I'm a professional musician. Not only was my left ear taken from me, but the ability to play - left hand impairment - like I used to has been hampered. It's slowly coming back the more I do it. I'm working three nights a week right now and it's not easy! Don't let go of the sax. It will come back to you the more you practice.
Paul
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I live in a beautiful ski resort town and skiing was a passion. The mere thought of skiing scares me with the vertigo.balance and lack of hearing issues. But then I recall seeing blind people up there skiing, so I guess at some point maybe I will ski again.
Patti UT
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Sure you can. Just start out real slow. You'll get it back. Don't expect things too happen really fast though.
Paul
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Tony, I was angry for a long time. Now 2 years post op I have accepted that people say things because they are uncomfortable and are glad that it's me with the problem not them. If anything I hope I've educated people on what NOT to say. This is the only place where we can "talk" about these kinds of things and actually have people understand.
And to the person who asked what should you say when you hear really bad news from someone, just say I'm sorry and do you need to talk? (if you will really listen).
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Crazykat I find that true friends are hard to come by. Most are backstabing weisels seeing what the can get for you or what you can do for them, but have no time for you. A true freind wouldn't put you through hell, ask for anything, expect anything, and is there when you need them. I find when it boils down to it you have few if any true friends. Kind of like a divorce. Once you get burned, you have a hard time getting close to the fire again. I find that some famly member can be worse :o
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Yes RC. That is what struck me the most: the cold-blooded viciousness from people that I thought were "friends". You wouldn't really expect that kind of treatment from acquaintances or even total strangers off the street. That just blew me away. But that's alright because I'm mentally stronger than they are and I can put up with and deal with a lot of grief. More "grist for the mill" or "sauce for the goose".
The medical ordeal I went through probably would have killed them if they had to endure it, given their age and physical condition. Then, of course, there's the aftermath of having to live with the stigma and hindrances of having had an Acoustic Neuroma; not to mention the concern of the damned thing growing back!
On a different note: There's a woman I know that I met after my surgery a year a go. She worked in customer support for a hi-tech company. She had had an A.N. resection in 1977 and had so far, been doing just fine. We met for lunch in a conference room at her company. She was apprising me of what to expect during my recovery period. It was interesting to note that she had had her surgery long before there were even MRIs'!
Just recently she contacted us, reporting that she has a 2cm regrowth! After all that time. Can you imagine? That's the longest period of time I've heard of yet! I turned her on to this forum. Not sure if she's posted anything yet. I'll be contacting her again. I think her surgery is scheduled for sometime in November at Mass General, my old alma mater.
Only goes to show that we are in no way out of the woods yet!
Paul