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DARLENE'S STORY
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This story
and any others will be
added to as I receive them.
The words will not be changed in any way
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24th,January:2000.
The Beginning.
-----------------
My
father worked in the Naval shipyards for 10 years.
My mother died of mesothelioma in 1986.
My sister has just been diagnosed
with asbestosis.
We are all scared right now.
I have seven siblings total, and six of them
(including myself) would have
been exposed to asbestos.
Thank
you for posting your site.
The photos of your husband reminded me of my
mother -
WHAT A TRAGIC LOSS.
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25th: January, 2000.
Hi
Deidre,
Thanks so much for your response.
I was a little emotional when I responded
earlier and realized that I had
not commented
on something you had written.
You commented on the difference
between your husband's illness/diagnosis
and your sister's - in the ways they
were told and how it effected them.
I have to say the same was true for my mother.
She "lived" until she was told she
"could" live no
more, so I definitely understand
how it left your husband with no hope -
and how unfair that was for him, for you and your family.
Anyway, I just wanted to comment,
as I found your words and his photos
very moving.
--------------
Respecting
my mother's symptoms before diagnosis.
I would be more than happy to share
that information with you.
In fact, I have fairly good records -
both written and in my memory.
I was
only 19 when she was diagnosed,
and I took care of her until she died.
I will start compiling something for you right away.
------------
I
would like to start a support group.
In fact I was happy to find your site,
because I would like to create a
page in honor of my mother.
I just purchased a new computer,
and I have big plans for it.
I also would
like others to know about
all the needless pain and suffering .
After my mother's death I sort of
closed the door on an illness that
I didn't
know much about.
But things are different now.
I know more.
I know how to find out more
thanks to the internet.
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And
I am very angry.
- AND AFRAID.
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One
last thing - thank you for the advice on the xrays.
I had mine taken about
two weeks ago,
and it looks normal.
Additionally I am having a
pulmonary function test this week.
Thanks again for sharing your story
with the rest of us - Darlene
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5th; February,2000,
Deidre,
I apologise for not getting back with you,
But I have had a most difficult
week.
Last Friday my oldest brother's xrays
revealed asbestos damage
both
in the lungs and in the lining.
Yesterday,
I had my pulmonary function tests,
and I scored horribly low on
the lung
diffusion section.
The person that gave me the test told me
that it was a very strong
indicator of
asbestos exposure / damaged lungs.
In fact. she told me that it was the most important test.
And then,
somehow, I managed to fail it.
Anyway, I am writing today to find out
if you know anything about clear
x-rays and pulmonary tests
indicating damage.
I am very concerned about
this.
I fear that we have only caught something
before it is ready to show up.
Any information would be greatly appreciated.
Additionally, in all your research,
have you come across children
being
exposed in the home?.
And have you any information
regarding an entire
family?
Hope to hear from you soon, Darlene.
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8th February.2000
Hi
Deidre,
Regarding my comment about children
I did mean children who have been
exposed to asbestos in the home
(like myself
and my siblings)
Given what is happening in my family
so far it looks like three of the
seven have confirmed
asbestos related problems.
I was wandering if there were any current
or old studies of families.
Thanks for re-sending the info.
I have started my mother's site,
and would
like to link it to yours. Thanks, Darlene
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8th February;2000
Deidre,
I received am e-mail message from a woman
who saw my name on your
guestbook.
Her husband has mesothelioma.
I have to tell you that as
difficult
as all this is,
it feels so much better to be able to
reach out
to other people
going through it.
So, again, thank you.
I will start the
chat group too,
as I can see that so many of us need to talk.
love and peace, Darlene.
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11th February,
Hi Deidre,
Sorry for not being more
clear about our exposure.
Yes, my father brought
the
asbestos home on his clothes.
My mother did his laundry in the basement
- and very often my older siblings helped out.
My father has been ill for years,
but there has not been a connection
between the asbestos and
his heart problems.
Although, I do wonder.
I also know, though,
that he wore a mask at work.
I talked to him the other
night.
He said they were very careful about
the men wearing masks,
but it
puzzles him why
they were not smart enough to know that
they shouldn't have
been walking
home covered in the dust.
I will write more later.
Thanks, by the way,
for adding my story to your
site.
I will send my mother's symptoms -
I promise.
I have been keeping in touch with Liz.
I think this is what we all need -
a
forum, a place to share,
someone else who understands.
Thank you for
starting that process for me
- it's been long overdue.
You are doing wonderful work -
your husband must be so proud of your
strength. Love, Darlene
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11TH February;
thanks for what you are doing.
I have more to add to "my" story
-
in particular what is happening to my sister.
I will forward an exchange with a B reader
regarding her xrays and CT scan.
It will help you to understand
what she is going through. Darlene
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Hi Deidre,
I apologize for not writing.
But I have been so overwhelmed by all of this.
I have been reading the other
stories on your site,
and I am often reduced
to tears.
There's so much familiarity -
and it is so painful.
I have been trying to tell you
my mother's story and provide you
with the
information about her symptoms
prior to mesothelioma -
but what I have
found is that
I have to separate the two.
I don't know if that makes sense
- but the symptoms seem rather factual or
scientific and my mother's story;
well, that was anything but scientific.
I
hope you understand the delay.
Even
though she died 13 years ago -
her loss is still so close to me.
And now
with all the talk of family exposure,
I have been brought even
closer to
that very loss.
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Each day is a mix of fear and strength -
as I try to sort out what we have
already lost and what
the potential for the future is.
I often find myself trying to analyse
exactly how much asbestos an infant
of my size could have inhaled.
I have these horribly vivid pictures
of my
father coming home from work
and reaching out to hold me
- of my little
hands touching him -
and then those same little hands putting
a bit of
asbestos right into
my little mouth.
And then I think of my big sister
- so
afraid of "monsters"
that she always had to be near my mother
-
even when she did the laundry
in that darn basement.
And
I wonder and wonder -
how much was too much.
We were so small -
it's like
we didn't stand a chance.
And then I wonder,
do we have a chance now?
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And
yes, I have been keeping in touch with Liz each day.
She said yesterday
that they had not
started the radiation.
When I received her e-mail it
nearly broke my heart.
I don't know how much time Chris has left
- and I
had been encouraging Liz to help him
"live" that time.
I had shared stories of my mother and
how she would always want to do
things
"when she got better."
And I told Liz; honestly, that
"better" never came for my mother.
Anyway, I am hoping to meet up with Liz tomorrow.
I will pass along a hug
for you.
Thanks for being out there, Deidre.
Love, Darlene
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21ST
MARCH; 2000
Hi Deidre,
Sorry for not responding sooner,
but - as you might have guessed -
I have
been overwhelmed by
everything that has happened since December.
I am still going through tests myself
- and, as a result,
I am mentally and
emotionally exhausted.
I had my CT scan on Thursday
and will meet with my
pulmonary specialist this Friday.
Due
to an overabundance of fear and pain,
I guess I have sort of been on the
edge.
I'm starting to pull things together,
but I can see that it will take
some time before I feel comfortable
being myself again.
It's remarkable how much has changed
- since knowing - really knowing -
that we, as a family,
were exposed to asbestos.
I guess we all
"knew,"
of course, because we lost our mother
- but there was
also that feeling
that maybe it didn't enter our breathing space
- or that
maybe our mother took it all in.
Some days are just so difficult.
And everything feels different now.
Every
thought seems to come with a
darkened after thought
- the always present
reminder that
I may not realize my dreams
and my hopes because I,
as a very
small child,
was inhaling asbestos fibers.
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It
makes no sense.
I get angry just thinking about it.
And just knowing that
someone knew,
makes it all so much more painful.
I consider the thought
process that
someone must have gone through
deducing that profit was more
important
than a certain number of lives
my mother's, your husband's
and perhaps our own.
I know it happens all the time
a "few"
lives for the good
of something else.
-----------------
Unfortunately, I'm not seeing the good.
I just see that people knew the
dangers -
knew enough to make my father
wear a mask at work
but didn't
know enough to keep
him from bringing it home to his wife
and his seven
children?
Hard to believe.
Hard to imagine that a group
of people might
have been sitting
around a big table discussing
the risks, concluding what
we now know must have been concluded.
And hard to believe that -
even if my
CT scan is normal
I will spend each and every year
for the rest of my
life,
wondering if the asbestos I
inhaled as an infant,
and as we inhaled
as a family,
will one day kill me
or any of my siblings.
-----------------------
To
put it in perspective
when I went for my CT scan the technician
looked at
me and with a bit of hesitation
or confusion said, "Wow,
asbestos
exposure? On the job - at your age?"
I said, "Nope, just being a
kid - at home."
And she replied, "
Wow, rough childhood."
And
I guess that's really what is was for us
despite how it felt.
So, yes, my picture of my past
has changed, and, thus,
I struggle constantly
to regain
control of my present
and of my future.
Anyway, I apologize for not writing sooner.
I will keep in touch.
I hope
you are well.
Thanks for writing.
It's nice to know that you care.
Love, Darlene
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10th
April. 2000
Hi Deidre
Thankfully, my CT scan was normal.
A retake of the pulmonary function
tests
revealed also that the first tests
were not quite accurate
not humanly
possible, in fact.
From what I gather,
the person performing the tests
should have known that the
results were not quite right -
but she was new
at her job.
Bad timing for me,
I guess, as I figured I was well on
my way to asbestosis
or beyond.
Anyway, it was very scary.
I now have to decide how often I want
to
check to see if anything has changed
- every one or every two years????
I'm not sure what I will do.
I am still trying to find a place for
all of this mess in my consciousness.
Darlene
----------------------
Hi Deidre,
I had to have an emergency
laparoscopy on Wednesday.
After years of pain
(and two previous laparoscopes),
my doctor found endometriosis.
We are
still waiting for the
stomach biopsy results,
but I think it is safe to
say
that it is not peritoneal mesothelioma.
Thank God.
Anyway, I just wanted to let you know.
I hope you had a wonderful Easter -
surrounded by those you love.
Much love,
Darlene.
-------------------
February 2013.
I sadly lost touch with Darlene
but recently heard that
four of her siblings have
been diagnosed with an
asbestos related disease
Two of them passed away
in their forties
of mesothelioma
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