Author Topic: new here & need advice  (Read 2653 times)

barblk

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Re: new here & need advice
« Reply #15 on: April 08, 2009, 01:05:00 pm »
Patty,
Just a quick note.  This is my first time to write.  I have been reading this forum since my daughter, Liz, was diagnosed one month ago.  She is 28 and has a small an.  We went Mayo last week.  (We live in Minnesota).  Because of her young age they recommend surgery.  I was pretty devastated as I thought for sure since the an was small that they would recommend wait and watch.  Because of her schedule she did decide to wait until July for her surgery.  Her only symptom has been hearing loss. 

I have to admit that when she first told me, I did not get how serious it was.  After I started researching on the internet, I got it!  Her brother understands the seriousness, her step sister does not and has not even bothered to call her.  One thing I have learned is that support comes from different people for different things.  Someone who can support me for this event may not be able to support me for something else.  I encourage you to stop and know where you can find support now .  What is you need now and who can give it to you.  And know that at this time your brothers are not capable of providing support for what ever their reasons are.  (And they may not even realize it!)  However, I would not exclude them entirely....keep them informed...but do not expect anything from them.  They surprise you and do what they can. 

I will be interested to know what you find out at Mayo.  We were treated with a lot of respect and time to process.

Barbara

kathylittlejohncobb

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Re: new here & need advice
« Reply #16 on: April 08, 2009, 01:25:11 pm »
I really like what you said, Barbara.  Sometimes we don't understand where someone is "coming from."  And sometimes we may never know.  What makes some people respond readily and with great compassion, and others~~whom we expect to be there for us in a big way~~don't seem to respond well at all?  And it seems that this happens to so many people, too.  My own experience was that almost everyone responded so wonderfully, so that the couple of people who didn't respond stuck out.  One was a previously close cousin who to this day has not mentioned my surgery, even though she had my ear (oh, what a bad pun!) through her two hip surgeries and the death of her husband.
My sister, who was with me and my husband in L.A., acted strangely quiet and, to me, almost uncaring leading up to my surgery, but afterwards was totally compassionate and caring.  I still don't know why, but have mostly decided that she was struggling with it all.
The good thing about this forum is that people lucky enough to find it pre-surgery, or in w/w, can learn from all of the many experiences talked about here.  (I wish I'd known about it pre-surgery!)   :)
The best to you/everyone,
Kathy   
Retrosigmoid at House/St. Vincent's in Los Angeles 4-4-06; partial hearing saved on AN side;
Dr. Marc Schwartz & Dr. Rick Friedman, my heroes!

cherrypiper

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Re: new here & need advice
« Reply #17 on: April 08, 2009, 08:56:48 pm »
that's a hard one Patty it really is. My sister was so supportive b4 hand. she and her hubby have been thru cancer treatments and surgeries and i expected some help and support. my wife did too. we got nothing . not even a card or a phone call day of or after surgery.

so we move on. we seek and get support from where we can. this forum has helped me a lot. Old timers like Jim and some of the ladies. you can see all those stars by the names. they help .

Hang in there kiddo. get your support where you can. let the rest go ...........

10 mm x 2.4mm surgery date 12/03/07

glad to be here

madison

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Re: new here & need advice
« Reply #18 on: April 17, 2009, 02:30:13 pm »
hello. i am also new to this discussion group, but i am so glad i found it. not to skip the subject, but before i forget- i am assuming that's your cat in the picture and he/she is ADORABLE! i love animals-but especially cats(i have 2)
so anyway... i read your post and i am sorry about your family situation. the responses you got were great. i will not duplicate but theyt are true and hope they help you somewhat. i can relate in a way. i am very close with my family-HOWEVER- i have had some serious medical issues throughout my young life and i think my family has become somewhat desensitized. when you first have a problem, it's a huge ordeal. but as time goes on and you have more and more things happen, everyone seems to get used to you having surgeries, etc.. i am fortunate enough to have been able to work almost all the time and i really haven't looked sick either so that makes it seem even less of a big deal. but-it isn't to me-not that i want outpourings of sympathy, but sometimes i think HEY! ARE YOU ALL IN DENIAL OR WHAT??well, i wish you all the best:)
Pennsylvania:female: 40 yrs. old
R ACOUSTIC NEUROMA;GAMMA KNIFE FEB. 2008
multiple meningiomas
scheduled for translab @ Thomas Jefferson in Phila. Pa. on 6/18/2012