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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.

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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.

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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.

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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.

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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.

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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

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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.

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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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