"It Could Be Worse"

[msuscottie]

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?

[Sue]

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

[suelay]

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. 

[Laura]

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.

[Gennysmom]

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. 

[Sue]

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

[Obita]

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."   

[Patti]

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

[Derek]

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.



 

[Jeanlea]

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

[Rc Moser]

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. 


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!!!!

[Battyp]

I kept hearing...You're kidding right.  Like someone would joke about that.

[windinthesails]

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.

[littlemissrory]

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.

[Pembo]

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..........