Dear Marcy..
Am happy to hear of your graduation ;o)
Understand exactly what you are saying about feeling a bit
lost. The end of
Herceptin chemo is in sight for me. Have the final 3 months
ahead of me.
That means my body will be on its own to keep IT from coming
back.
The unknown is scary.
You have accomplished a lot in the past months and living
with pain is
awful. Of course, the unknown ... will the pain always be
with me...is the
factor that is stressful, as well as co-ordination, fear of
falling etc, and
riding in a car could be a trauma too.
Know that the list is here for you always...and gentle hugs
are coming your
way from our hearts. Love Marion
----- Original Message -----
From: "M. Manning" <manningm MINDSPRING.COM>
To: <BREAST-CANCERCLIFFY.UCS.MUN.CA>
Sent: Thursday, March 30, 2006 12:30 AM
Subject: update
> Hi all!
>
> Last week, I graduated from going to PT for leg
therapy. While I realize
> that is good news, I'm not fully healed. In my darker
moments, I fear
> that I'll always have this level of pain. In better
moments, I'm more
> hopeful.
>
> I am not finished with PT really. I have to do a lot
at home and I still
> have to go for occupational therapy on my right hand,
starting in about a
> week. I do wish they'd tapered off the PT
appointments instead of
> abruptly stopping them. I asked them if that was
possible, but they said
> no, it wasn't how they did things.
>
> I recall feeling, after bc treatments, the same
lost-in-the-woods feeling.
> I knew then and I know now that it's a good thing to
graduate from one
> level to another. But the PT people were so good and
kind, and I liked
> everyone there. I was watched over and understood by
people working there
> and by other patients, and it had a vaguely social
component to it, on top
> of the fact that the whole place seemed,
good-naturedly, to be working
> together to help everyone.
>
> There's a let-down. Also, there's fear. Now that
I've come so far in
> terms of mobility but still have so much pain, I'm
scared. Today, the
> father of a guy down the street was telling me how he
had both knees
> broken about 20-30 years ago. Compensating for the
knees ruined his
> ankles, and then it got so that he could no longer
work. He talked about
> accepting the limitations.
>
> I was lucky (once) to be strong and able-bodied.
Everyone sees me as such
> a strong person (and I am, in a way, in that I work
really hard and do
> whatever I have to do; I cope). But inside, I'm
scared. None of us is
> owed anything on this planet, not the slightest thing
perhaps. If we're
> lucky enough to be alive, we cope with everything else.
I do miss living
> without pain, with effortless motion.
>
> They tell me I'll continue to heal for another 8.5
months, and then I get
> the feeling I'm stuck with whatever level of pain
and/or disability is
> left over at that juncture. The PT on Friday did
assure me that I'd heal
> a lot more, that I wouldn't always have this level of
pain. But how much
> will it decrease? Not 100%, in all likelihood (that
much they've told
> me); I'll probably always have pain. Will it go down
50%? 30%? 80%? I
> don't get the feeling that anyone knows.
>
> I still feel as though I have lots of pain and pressure
always around my
> knees. They say I can remove the metal via surgery at
some point if it's
> bothering me. But I don't want more surgery and I
don't trust that
> surgery will necessarily make things better, since it
isn't clear that
> it's the metal causing the pain. They had to deal
with a massive amount
> of tissue damage from the accident, and the doc who
operated had to damage
> more tissue in order to repair the bone breaks (he did
as little as
> possible, but still....).
>
> I did venture out to a couple of larger gatherings last
weekend and I did
> ok. I'm still working full-time, so I'm coping there
too.
>
> But behind and beyond the coping is the pain and the
fear, mostly of the
> pain. Pain is rough. I don't really know very well
how to explain how
> much this affects me. I guess I'm still at an
intermediary phase and I
> have fears about what my life will be like.
>
> At the same time, I'm restless. For what, I don't
know. I don't seem to
> be able to think clearly about what would make things
better or what would
> make me happy. As I did with bc, I wonder why I was
saved and allowed to
> continue to live, wonder if there's something I'm
"supposed" to accomplish
> in whatever life I have left, wonder if I'm already
doing it or if
> refinements are in order.
>
> I feel a bit as though I've been nudged out of the
nest and told, "Cope.
> Deal with it." Most people deal with me as
though I'm fully well, so that
> feels weird, when I'm not fully well. I know they
mean well; they want me
> to be well. I feel a bit as though I'm disappointing
people to say,
> "Well, actually, pain is a huge problem."
The people on this list have
> been the biggest help to me in the emotional realm of
dealing with this.
> I think everyone who's been through bc has a sense of
the
> life-changingness of it, of the gap between what others
say and what's
> really happening. So people here GET IT. I'm
grateful for my doctors
> and PTs, but right now, the majority of the time, I'm
on my own. I
> realize that the professionals have a whole new batch
of newly injured
> people to whom to tend. So I'm nudged out the door or
the nest, and I
> don't think they realize how abrupt it all feels.
>
> They said I'm ready for the world. I look ready. But
I don't fully feel
> ready.
>
> Love,
>
> Marcy
>
>
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