T.R | Title | User | Personal Name | Date | Lines |
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1241.1 | | HOO78C::ANDERSON | Zeker is dat niets zeker is. | Fri Mar 06 1992 07:54 | 52 |
| This one I have personally experienced and I can assure you it is no
easy task. So with the benefit of hindsight I would recommend the
following.
Inform them that the docs are a bit puzzled and want to do some more
tests. There is no point getting everyone all upset in case it is
nothing.
If the tests prove that you are going to be OK then no harm has been
done.
On the other hand if things do not look good you must carefully quiz
your doctor on what your prognosis is. I would advise the use of the
word prognosis as it tends to elicit more detailed responses from the
doctors. Replies like "80% after 5 years" means that 2 in ten will die
within the first 5 years, and "The quality of your life will slowly
degrade", means you are going to die.
Next read all that you can about your condition. Large bookshops will
let you sit in their medical section for ages reading without you
having to buy anything. If any of your personal friends are doctors
pick their brains without mercy.
When you have the all facts, then is it time to start telling people.
Now no matter how carefully you choose your words some will totally
misinterpret what you said.
In my case I spent nearly an hour on the phone telling my mother that I
was going to have a heart transplant operation and the survival rate
from this was good, but less than 100%. I had a suspicion that she had
not taken it in and had a doctor friend phone her back a day later. She
was totally convinced that I was going to die and had given up the will
to live!
Actually at first your impulse will be to avoid telling people, after a
while this will fade and you will not mind talking about it. Be
prepared for some people to shun you, this is embarrassment on their
part as they do not know how to deal with death.
If your problem was along the lines of mine, I gradually wasted a way
until I was a living skeleton, then be prepared for anyone that has not
seen you for some time to have a bad shock. It will be your job to
comfort them.
Apart from that play it by ear.
I most sincerely hope that your diagnosis is a good one and wish you
luck. Should you wish to contact me by Email, my address currently
resides on the top left of your screen, please feel free to use it.
Jamie.
|
1241.2 | | VMSSPT::NICHOLS | conferences are like apple barrels | Fri Mar 06 1992 08:20 | 4 |
| I would feel obliged to tell my wife that additional tests are
necessary.
herb
|
1241.3 | | SCHOOL::BOBBITT | raging jubilation | Fri Mar 06 1992 11:22 | 15 |
|
Personally, I think I'd share completely with those closest to me
because I'D need THEIR support (yes, I'd need to comfort them too, but
primarily I'd probably be going crazy with worry and fear myself!)
And I feel relationships are richest when we are fully present to one
another (with nothing hidden). Complete relationships are not
necessarily the smoothest, but they're the most whole. It's hard to
really be with someone you love if there's something big you're not
telling them.
note, I've never been in this situation before.
-Jody
|
1241.4 | as everything else, it depends | PULPO::BELDIN_R | Pull us together, not apart | Fri Mar 06 1992 15:42 | 18 |
| Re: .0
The right thing is going to depend on the relative strengths of
the people involved, how much uncertainty they can bear, and how
much support the "patient" needs.
My principles would tell me not to burden my wife with the gory
details of the worst case analysis. I definitely would tell her
I have a problem and that the doctor needs more tests before
making any diagnosis.
Since my eldest son is pretty tough, I might use him as a
sounding board about how much to tell my wife and my younger son
and my parents.
It is a very good question.
Dick
|
1241.5 | from wish-i-hadn't-had experience | FSOA::DJANCAITIS | to risk is to live | Fri Mar 06 1992 17:07 | 23 |
| from personal experience with both my mom and dad, I'd say share at least
the basic known info with those close to you - let them know that there
is *something* wrong, but the doctor is unclear what until further test-
results are in. If the doctor told you any things of "might be XXX or again
it may be YYY", I'd also read up *personally* on those things so that I could
be aware of what they might mean and prepare myself to ask the doctor specific
questions based on the results of the testing. I probably *wouldn't* go thru
these things with others though, especially if there are extremes unless I
felt that they wouldn't "go off the deep end" with the extremes (by extremes,
I guess I'm trying to say one possibility says "3 month life expectancy", the
other says "easily treatable and rarely reoccurs" or something like that).
One very heart-felt request from me, basenoter - if you ARE going to tell
anyone anything, either before or after the results are in, PLEASE be
prepared to talk with them and listen to them and let them help you. The
hardest years of my life were knowing my mother was dying and being told we
couldn't talk to her about it because she "didn't want us to know". If you're
not willing to talk about it, don't tell !
Best of luck - I sincerely hope the results come back with minimal impact to
you and those you love/care about.
Debbi J
|
1241.6 | my own experience... | BERN01::LEBLAY | Here, where the world is quiet;... | Mon Mar 09 1992 09:50 | 18 |
| I was once in the same situation. Doctors believed that I had a brain
tumour. We did not yet know the results of the tests and had to wait for
them for 2 weeks. In the meantime I told my husband, not quite straight
away but a few days later when I could deal myself with the problem,
I suppose I wanted him to be prepared and he is also my best friend.
I did not tell anyone else and certainly not my parents, they would have
worried too much and it would not have been of any help to me.
During the 2 weeks I was waiting for the results, I thought of the
consequences quite often but I avoided talking about them, it was no point.
I did not feel nervous and was not over worried. I was fortunate enough,
the results were negative. I'm now partly deaf and doctors still do not
know the reason. I only told my friends and relations when everything
was over. I believe it was the best solution in my case.
Take care and try to get your mind occupied with the other things.
Valie.
|
1241.7 | | HOO78C::ANDERSON | Zeker is dat niets zeker is. | Mon Mar 09 1992 10:27 | 6 |
| Deciding who you should tell at this moment should mainly be judged on
the person that you are going to tell. Some are much more able to deal
with things like this than others. I would strongly advise against
telling a "born worrier" at this uncertain stage.
Jamie.
|
1241.8 | Wait till................... | MR4DEC::LSIGEL | That was just a dream | Mon Mar 09 1992 11:56 | 7 |
| I would wait till the tests are done before you tell your family, if
they are positive then you have nothing to worry about.
Good Luck!
Lynne
|
1241.9 | | VMSSPT::NICHOLS | conferences are like apple barrels | Mon Mar 09 1992 12:50 | 10 |
| 'before you tell your family'
if by family you are including spouse...
My wife would be furious with me for not telling her. Furthermore,
after 25 years of marriage she would know SOMETHING was wrong. I would
not be able to keep from her some sense of the anxiety I would be
feeling.
herb
|
1241.10 | Real question... | AYOV27::BCOOK | the only dance there is | Mon Mar 16 1992 09:04 | 12 |
| I've been there. When and what to tell to whom depends totally on where
you're at in relation to them and, more importantly, with yourself.
Like others here my first reaction was not to tell anyone outside the
family and I was quite annoyed when my wife broke the news. I needed
time to integrate my feelings. Recognise that what was happening to me
was the greatest gift I could receive. That was seven years ago. Please
send me mail off line if you wish to talk about it further. I'm in all
this week but sometimes don't have access to the network for some time
so please be patient.
Brian
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