A place to vent

[matti]

I also think people minimize our or anyones diagnosis/problems, due to fear and denial. First reaction is shock, second is to comfort and how most of us comfort is to say "it's not that bad, it could be worse or at least it's not cancer".  I am guilty of it, but IS it what I wanted to hear with my AN diagnosis, NO!!! Through my own journey, I found that I was the one doing the comforting with my family and friends and telling them it was going to be alright. I was scared, but so were they.  I really don't think people know how to react unless they are in your shoes.

Just throwing this out there, but before our own AN diagnosis and journey if someone where to come up to us and say "I have a brain tumor", what would you say?

Cheryl

[ppearl214]

Just throwing this out there, but before our own AN diagnosis and journey if someone where to come up to us and say "I have a brain tumor", what would you say?

Cheryl

Unfortunately, I was introduced to "brain tumors" far too young in life... I wish I could answer your question but now when I hear it, it's a true mix of emotions but I try my best (not always succeed, but do try my best) to be as supportive as I can since I/we are now in the same shoes.

Not enough coffee yet today....sorry.
Phyl

[sgerrard]

Just throwing this out there, but before our own AN diagnosis and journey if someone where to come up to us and say "I have a brain tumor", what would you say?

I might have said "I hope your surgery goes well", but been thinking "I hope you don't end up in a wheel chair speaking through a computer voice." I didn't know much about them, obviously.

One reaction I got was "just get really healthy and take supplements, the tumor might disappear on its own." Another was "that needs to come out", as if that were as easy as having a wart removed.

It seems to  help to explain that it is a tumor growing on a nerve. This helps convey that it is not growing inside the brain itself, but that it is in a very busy neighborhood, so treatment is not trivial.

[Windsong]

i like that phrase...."it's in a very busy neighbourhood"... thanks.. .that about sums it up doesn't it?

[Lorenzo]

Ya, a real spaghetti junction of nerves, with lots of traffic and little space to do road works without disrupting the rush hour.

[matti]

Lorenzo and sgerrard - Thank you! I am using both of your explanations from now on, hope you don't mind 

Cheryl

[Lorenzo]

LOL  Did I write that? Gees. 

[Captain Deb]

I like the analogy of the tumor being located in the major fuse box of the brain, or at Ernestine's "One ringy dingy, two ringy dingies" telephone snake nest of a station.

Capt Deb

[Larry]

yeah, I feel likee a ringy dingy most of the time.

Someone please invent a headache free day. I mean, I'll even tackle the sea monster with my bare hands. Just one day of no ringy dingies.


Laz

[Captain Deb]

No Spit! I haven't had a headache free day since I woke up from my surgery!

Capt Deb

[TP]

For people who blow this off and say it is not "really" brain surgery, that is when I grab their hand and place it behind my ear and let them feel the 4 inch long 1/4 inch deep scar. That usually grosses them out and I get a good chuckle. It is amazing how insensitive "some" folks are to the notion you've had brain surgery. Fortunately majority of my friends and family are very kind and sensitive and really do care but there are a few who I categorize as clods.

[Lorenzo]

At least you got the scar to prove it! I haven't that either. All I can say is that I probably glow in the dark, inside my skull. Without physical evidence it's harder to convince them that it was real and that we did get major treatment.

As for the morons, we all have ways to deal with them. Now, I just ignore them, or snap their heads off, verbally. Depending on the mood of the moment.   

Ciao

Lorenzo

[Mel]

Why do I say, "They call it Brain Surgery, but I don't understand why."?, when I talk about my upcoming
surgery.  Do I say this to make my friends and family feel comfortable?  Why do I pretend that I feel wonderful
all the time eventhough on some days I would like to be a mole and crawl in a hole?
Ooops! Got to get to work!!   
Thanks  Mel

[Brendalu]

I went to visit an older friend whose daughter (my age) had brain surgery two weeks ago.  I asked how the daughter was doing.  She said, "I don't know, all she does is cry when I go see her or call her so I don't bother."  I didn't want to explode at this woman, I was taught to respect my elders.  She further went on to explain that her daughter was afraid she was going to end up like her younger sister (deceased) who had brain surgery.  She then said all they did was relieve the pressure that a vein was creating on top of another vein.  The surgery was perfect and there is no reason for her to act this way.  I was amazed at this woman's attitude.  She totally and completely ignored her daughter's feelings.  I asked for her daughter's address and just on a hunch I stopped by to see her.  I let her cry for an hour with my arm around her.  She just wanted someone to understand what she had been through.  She, as I did, felt guilty because she survived the surgery. Her sister had not.  I got on her computer and showed her our forum and found some for her problem.  I gave  her my phone number and email address and will accompany her to her doctor's appointment on Friday.  Her husband found no reason for her to not go to work today!  I am just truly amazed by insenitive people.  Especially families.
Brendalu

[Betsy]

I do the same thing, Mel, especially with my mother.  With her, it's an "ear problem".  What I really want is to tell her how scared I am and have her tell me it's going to be okay.  I've come to the conclusion that it would be worse to see my own fears reflected in her than to bear them on my own, so it remains an "ear problem" that needs to be "x-rayed" to be "fixed".

Brendalu, you did an incredibly kind thing.  You're my role model!

Betsy