Friday, December 7, 2012

The Same as a Broken Leg?

I don't think so.

I was just telling someone that my scans were clear.
He was telling me how much of a blessing that is.

He obviously didn't know how I have been feeling.

I tried to explain to him what the situation was.
I tried to explain that my mind may be affected for
a long time to come.  I tried to explain that just
because chemo was over didn't mean that suddenly
everything was OK.

He tried to tell me that I often sound fine.  That I
had to be fine, and now I could just move forward.

When I tried to tell him that he didn't understand,
that even though I could function in some ways,
there were things that are extraordinarily difficult.

He turned around and said that when someone
breaks a leg they don't just "sit there."  They get
up and and do something.

When someone breaks a leg?

It is NOT the freaking same thing.

Someone else I was talking to was looking online
to see what he could find out about what I am
dealing with.  He found something I didn't even
know about:  PCCI Post Chemotherapy Cognitive
Impairment.  According to good ole Wikipedia,
it can last up to 10 years!

While there are things I might be able to do to
help myself over the long run, over the short run
it is incredibly frustrating to work so hard to do
some things that before were practically effortless
for me.

I have always appreciated my brain.  I have often
been quick-witted and able to remember things.
Now it is very difficult, and it is even difficult
to read things, and retain what I read.

I had heard about "chemo brain," but it was never
explained to me like this.  Would I have wanted
to know?  Would it have changed the way I did
things?  I don't know.  But what I do know is that
this recovery may very well be more difficult than
the recovery from cancer.

This - in some ways - is much harder to cope with
and harder to accept.  I read that "many" people
think that when the chemo is over they will just
be able to get on with their lives.  So apparently
I am not the only one who thought that.

How the fuck am I going to deal with this?  It is
so hard to do anything.  On top of that, I heard
of one woman who had it so bad she had unpaid
bills piling up and didn't care.  I am not quite there,
but I can relate to the lack of caring.  You have to
care to do things - especially when it takes extra
care to do them, or they don't get done.

People talk about the fight with cancer.  This
feels like a much bigger battle to me.

I want myself back.

That sounds so tame compared to how I really
feel.  I am sobbing as I type.  I feel like I am in
this really strange state.  It is one that I think only
another who has had this could relate to.

If you know someone who is being treated with
chemo, please understand this is all too real.  It
is not stress.  It is not made up.  It is fucking real.
And it will change the person in ways that s/he
has absolutely no control over.

I have told people around me that I don't always
remember things.  I probably repeat myself more
than I want to.  I sometimes get lost mid-sentence.
I forget the simplest of words.  I can't always
communicate as effectively as I would like, as
I sometimes lose my way to where I was going.

At the same time, it would seem to those on the
outside looking in that it is no big deal.  That I am
just fine.  As I have explained before, I am
functioning mainly from my right brain.  I have
always been right brain dominant.

But the right brain is more intuitive.  It is easy
for me to write these blog entries when I DON'T
think.  But the problem comes when I do.

For me to plan my life, for me to plan work and
negotiate the things I need to for work, it is an
incredible challenge.   I wonder if those treating me
ever thought about how much it would challenge
me, given my circumstances.  I don't know that
it would have changed a thing, but I am in a very
different situation than most.

I don't have family supporting me.  No husband.
No kids.  I didn't have a job when this happened.
No benefits.  No disability.  I have the "wrong"
kind of cancer to get much of the help that is

Sure you can treat me.
But, hell...now freaking what?

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  1. You are going through a lot. You ask now freaking what? Have you contacted the center where you were treated and see what support they can give? I think also a support group and to be with people that are going thru the same thing can be very comforting. I think your sisters have been there for you and I think if you reach out I am sure they will reach back. I would also try asking your mum :) I love you.....

  2. This is the problem with being public about what is going on. You get feedback from people who think they know what would be helpful. Nothing against you Jane, or anyone else who says anything, but what you suggest isn't necessarily going to help me. I could itemize each thing you said, and why I feel as I do, but I don't have it in me at the moment to do. I realize that there may be other perspectives, and that the one I currently have may not appear to be empowering, but it is where I am, for whatever reason I happen to be here and logic is anything but helpful.