Conference quark::human_relations-v1

Many newspapers print, at least weekly, a list of local support groups.  Many
local phone directories also have a listing of "Human Services" agencies
in the front of the book.  Try finding one which seems as if it might be
helpful, call, and ask for more contact information.

				Steve

    Boy do I FEEL for you, and HER.  I was diagnosed with a brain tumor
    over a year ago and had it removed.  I went through similar
    experiences.  My father, sisters and brother lived several hundred
    miles away, and the girl I had been seeing had broken up with me at
    that time.  I had the doctors assurance tht everything would be fine,
    but my god, they were going to drill a hole in my head and extract a 
    tumor and werent' too sure about if the tumor were cancerous or not!
    (It wasn't fortunatly).  Support groups?  I found it was next to
    impossible to locate any group for the problem.  So I went around for 
    nearly 3 months while things were set up and taken care of scared to
    death about it.  All I wanted to do was find someone, anyone who would 
    stop and talk to me, and try to get my mind off the problem.  MAKE me
    do something that would destract me.  I found engrossing myself in my
    son helped a lot.  And talking with a neighbor who had a simular
    problem and turned out okay, helped as well.  
    
    Perhaps you could contact her doctor and explain the problem, asking
    him if he could contact some people who'd had similar problems in the
    past and come out okay?  Often, just talking to someone who had gone
    through it and can answer some of the questions from a "I went through
    it" aspect could be of more help and benefit then all the "You'll be
    okay's from people who havn't gone throught it at all."  Or ask her to 
    have him check with someone who COULD put her in contact with someone
    else.  Beleive me, the words "You'll be okay" carry a lot more weight
    from someone who went through a similar experience and came out okay
    then the words of any doctor.
    
    FWIW
    
    SKip

    >Perhaps you could contact her doctor and explain the problem, asking
    >him if he could contact some people who'd had similar problems in the
    >past and come out okay?  Often, just talking to someone who had gone
    >through it and can answer some of the questions from a "I went through
    >it" aspect could be of more help and benefit then all the "You'll be
    >okay's from people who havn't gone throught it at all."  Or ask her to 
    >have him check with someone who COULD put her in contact with someone
    >else.  Beleive me, the words "You'll be okay" carry a lot more weight
    >from someone who went through a similar experience and came out okay
    >then the words of any doctor.
    
    Skip:
    
    I don't want to put you on the spot, but:
    
    		How about you??
    
    Sounds like you described yourself to a tee in the paragraph above.
    
    To the basnoter:  You might try contacting the hospital, or perhaps
    the American Cancer Society.  Either organization may be able to help.
    
    					good luck,
    					 andrew

    Well, if the basenoter will send me mail, perhaps I can offer some 
    info.  But what she has and what I had, are two very different things.
    My tumor was in the area between the skull and the brain and applying 
    pressure agains the brain.  Her's is inside the brain and will require
    a lot more.
    
    Still, I can talk to her.  It's realy amazing how much has been learned 
    and accomplished with the brain in the last 5 years or so.
    
    SkiP

    "I AM" in this same situation with my sister... went to see my family
    during my vacations in mid September only to discover that my sister 
    was in the hospital with a slight stroke...
    I asked for a private consultation with her doctor only to find out
    that she had something much more serious than that; she has a tumor
    well inside her cerebelum (back of the head and just above the main
    central nerve system).  She was operated three days ago and is still
    at the intensive care unit of the hospital as we speak.  I know how you
    feel, I know of no support group or anything like that, and in this
    situation I truly rely on my family; my husband is my best support, I
    love my sister dearly, I am almost 6,000 thousand miles from her, I had
    to return to the U.S. and to my house 2 days before the operation, I
    talk to her family (husband and sons) daily... the support that we give
    to each other, and the help and support that everybody gives is more
    than enough to keep us going... I immerse myself in work to avoid
    going over and over the problem and... I have faith in GOD.  That helps
    us all immensely, it may not help to non-believers, but it does help us.
    We have faith in God, faith in life, and faith in each other...
    
    A cyst is a lot easier to remove than what my sister had, (she had no
    time to loose as it was inbedded in) so, I should say to you, not to worry
    more than necessary...
    we have great doctors here and good medical care, it should be a lot
    easier than what my sister just went through. In the meantime, we all
    pray a lot, keep a strong front, and trust, and trust, and trust! 
    I'll keep you posted on her development...
    
    Cheers, Ana
    
    

    Also check out womannotes, note 1010.  There is a woman there whose
    daughter just had a brain tumor removed.
    
    Karen

> .0  ...  will soon be going to see a neurologist in Boston.  

The neurologist's office should have the name and number of such 
a group.  Other sources:

 The National Spinal Cord Injury Assoc. might be able to give
 you a relevant phone number. They are listed as 617-964-0521, in 
 Newton, by my 1987 Boston Yellow pages, under "Associations".
 (I'm assuming she lives in the Boston area.)

 Also, call or visit a public library and ask the reference librarian
 to look for such an organization in the _Encyclopedia of 
 Associations_.

>  Her Dr. at the moment is very nice but doesn't 
>  really talk to her (kind of acts sorry for her, which makes her
>  more nervous of her health).  

Yes, this could certainly make one nervous. The doctor may be backing 
off here, expecting the neurologist to fill in the blanks. If the
neurologist is equally fuzzy, well ... encourage her to push them.
When I had what I regarded as a severe medical problem several years 
ago, my husband and I saw the doctor together; I knew I would be 
too nervous to remember to ask or hear accurately what was being said.
It helped having him there.

The best of luck to your sister.

    
    
    	Thank you *so* much everyone for replying to my note, she is
    	feeling *much* stronger now about the whole situation.  I gave
    	her all the advice that people offered in here and she is *very*
    	thankful.  Re: Anna, I also will pray for your sister. I pray
    	*every* night for my sister and that alone makes me strong so
    	that I can be strong for her.  She will be seeing a Neurologist
    	in Boston next week so hopefully he will find out more about what
    	is wrong and what has to be done to correct it.  She lives in Epsom
    	N.H. so supports groups may be hard to find in that area but shes
    	looking in the Concord area to see if maybe they have something.
    
    	It's so hard having someone so close to you in so much pain and not
    	really being able to fix but just to be there.  I really feel for
    	you Anna but I'm sure your sister feels your love just as strong as
    	if you where right there.  I live about an hour away and I think
     	thats far, but I call her everyday and see her almost every week.
    	
    
    	Well' that you again and I will keep up to date on her condition.
    
    	Zina
                                                                        

    Zina, thanks for your words...
    I did speak with my sister yesterday! she could only say two words
    before before she started crying... her voice is definitely changed,
    but she is alive, is recuperating, and hopefully she will be getting
    stronger and better as the days pass by...
    I did cry a lot when we hung up, it is so very hard to see or feel that
    someone who you really love is that sick... it breaks my heart!
    
    I must have hope and I must keep on prying and having faith in the
    future and I must think that I will SEE her again soon.
    
    Best wishes for you and your sister Zina.
    Ana

From the Boston Globe, 10/14/91, page 36:

Brain tumor support group. For adult brain tumor patients and their
families.  Meetings every other Thursday, 10 a.m., Salem Hospitial, 
Neurosurgical Unit, Davenport 9, 81 Highland Street, Salem. [Mass].
Free. Call: Wendy Way, 508-741-1215, ext. 3900.

 Meigs

    
    
    	Thank you Meigs for group and #, I will forward this onto my
    	sister.
    
    	She is doing much better now handling the situation, she has seen
    	a Doctor in Boston and for now they are still calling it a cyst and
    	have decided to just keep an eye on it for awhile and then go from
    	there.  Anna, I want to let you know that my prayers and good
    	wishes for you and your sister & family are with you.  I'm sure
    	with gods help your sister will be well soon.  Things like this
    	are so hard but you *have* to keep the faith and believe.  God
    	*does* answer our prayers, he has always been there for me and
    	I know he always will.  God bless your sister Anna and your
    	family...    
    
    	Zina
    

    Thanks, Zina, for your words...
    my report on my sister... she's at home, the operation was successful,
    but she had the right part of her cerebelum removed and that part
    controls stability and part of speech.  She cannot walk unassisted,
    cannot shower or dress unassisted and has a bit of problem talking, her
    mind though, is sharp and clear, and because she is so aware of her
    condition, she cries quite a lot... I've tried to talk to her over the
    phone but she just cries when she hears my voice and does not say a
    word... so I don't talk to her but to her family... it breaks my heart
    to know how she is, but at least, she is alive and with her family, at
    her house, and surrounded of the things she likes and is used to...
    life is hard, but life is life... I constantly think of her and I phone
    at least once a week, I'm thinking on going to visit her during the
    Xmas holidays... (just 3 months after being there, but I think that I
    want to see her while she is OK... I do pray that she lives as long as
    possible!)  I do love my sister a lot, in fact, I love my family so
    much I'd give or do ANYTHING for any of them...
    Ana
    

    My last entry ws 13 of Nov... and only 7 days later I enter another
    one... and not good.  I had a call this a.m. (5.30 am to be precise)
    from my nephew to tell me that my sister had a Dr. appt yesterday and
    was found with several tumors in her lungs... (those 'monsters' were
    not there a month ago!) so, what to do? I am against chemo-therapy
    because it play havoc to the patient, she'll have vomits, will loose
    her hair, will be greysh all over.... and for what?  What she's got
    cannot be CURED with chemo... so why put her thorough such a h*ll for?
    
    My thoughts and my heart are with her, what I'd like to see is that her
    doctor keeps her free from pain, and let her be... she is at home,
    where she wants to be, with her family... surrounded by the things she
    loves... what else can be done for her?
    
    I am sooo sad! to top it off, the flight fares are very high because of
    the holidays and not too easy to get... most of days in mid Dec are
    sold out... I could only find flights available on Dec 29th and that is
    to Madrid, then I have to worry to get me to Seville, probably by car,
    if I cannot get a plane... oh well, we'll see when the time comes.
    
    I'm sorry if I sound too sad... I am! I just had to write this and I
    feel a tiny bit better just because I know there is support around...
    
    God bless you all!  Ana
    

    My entry of November is followed by this one, just after I RETURNED
    from my syster's funeral...
    
    She died on January 27th, I was fortunate to be with HER at that time,
    in fact, I applied and got one month of leave without pay to be with
    her, then flew to Spain and was with her a full 11 days of quality
    time, 24 hrs a day, as I had my bed next to her and nursed her
    throughout the time I was there...
    
    Spent 9 days with my Dad and kept company to her husband and kids while
    in Spain, I am AWFULLY sad at her passing, but I am at peace with
    myself knowing I did the best I could for her.
    
    Life is hard, I've found that out for a loooong time.
    
    Best regards, Ana