Hi Carolyn, first, I admire your courage to post an update. It is
difficult to deal with the situation when it is at the stage of your
John.

There are some of us, like myself, that are past the "curable"
treatments and are in life-sustaining treatment mode and I appreciate
knowing that there are still good things to find (like the hospice
Doctors and his smiling, etc), so thank you for the post and good luck!

Rich

Thanks for this Carolyn.

It may sound perverse, but we desire to know how things are at the end just
as much as how to delay the end.  Actually, sitting and watching TV is a far
sight better than how my father left us back when the meds weren't as good
as they are now and I am therefore given some measure of hope by your post.

Feel free to post -- or to lurk.  Your "gloom" is our knowledge.

You can count on my prayers and, lately, He has been listening to me for
some reason.

Steve

Carolyn, I too am praying for you and your hubby. As a person who has
lost two loved family members to this disease and now having to fight
it myself with the Lord's help, I can feel your anguish and pain.  As
Steve said, when you feel like it, post your feeling and experience
here so we too may know what our future may likely be when we get to
that stage. I've thought about whether I have the courage of continuing
to live once I get to be incapacitated, but hopefully I will not have
to face that. You are very strong and loving, and I praise you for it.

Our thoughts and prayers are with you and John and please know that your
post meant a lot to Larry & I.  As others have said, it helps to know as
much as possible about this horrible disease.  We lost Larry's brother to
prostate cancer a few years ago and he left this world quietly and calmly
with a contented smile on his face.  We wish the same for John.

Hugs,

Jean

Dear Carolyn,

I will put you and John on my prayer list.  I admire your courage.

Lisa

You and John are both in my thoughts and prayers, Carolyn.
I admire your courage.... and your loving devotion!

MikeH

Dear Carolyn,

I am so tired now that I am about to drop, but I wanted to send you
this letter ASAP, yesterday, by Priority Mail, Hand Delivery or
whatever..  I notice you posted a message at 3:08. So here we are in
cyberspace together in the wee hours of the night (It's 4:19 new york
time).   I was kind of  lonely being online at this hour so I am glad
for the company.

First I want to cite one of my favorite prayers and dedicate it to you
and John. because I think it applies to you, especially you, who are in
the role of a caregiver.

This prayer was reportedly written by St. Francis of Assisi who was a
great person who healed sick people, coommunicated with animals and
kissed lepers.  He was a true man of god.

Here it is:

      Lord, make me an instrument of your peace;
      Where there is hatred, let me sow love;
      Where there is injury, pardon;
      Where there is doubt, faith;
      Where there is despair, hope;
      Where there is darkness, light;
      And where there is sadness, joy;
      Grant that I may not so much seek
      To be consoled as to console;
      To be loved as to love;
      For it is in giving that we receive,
      It is in pardoning that we are pardoned;
      and it is in dying [to ourselves] that we
      Are born to eternal light.

I believe that you, Carolyn and John, have been true "instruments of
peace."  You have enhanced the world by loving and caring for each
other and by doing that you have inspired others to do the same.   I
hope you will be delivered from this lonely, constricted world of
cancer so that you can again live in an abundance with all the space
you need or want.  I assure you it will happen though it may take some
time.  As it is written...."In the straits I called to God and he
answered me with expansiveness." (Psalm 118:5).  I hope the relief
comes very soon for you both.

Pardon me for writing such a long message.  It's just that your post
triggered such strong feelings in me and it really moved me and I  was
also hoping to share some positive things with you.  I wish I could
reach across the pond and give you and John a big bear hug but I guess
I'll have to settle for this.  Just know that we are all with you.

My husband is a true believer in a "higher power"..  He prays every day
and he has read your post and has put you folks right at the top of his
prayer list.  I think that's good because he's a decent guy and he is
sincere about what he practices (bec. he acquierd religion in middle
age after actually studying and thinking about it for a long time)  so
hopefully his prayers  will get to  the right place.  I do not pray
regularly because i have some issues with God, we're not exactly on
speaking terms but I do make exceptions and I will pray for you both
anyway.  I hope we can both direct some positive cosmic energy your
way.

I wanted to tell you that I'm so glad you posted this message even
though it just about ripped my heart out.. I am sitting here trying to
stitch the pieces back together :-)

I can't imagine how horrible it must feel to watch the healthy, fit man
that you treasure so much waste away from illness.  I am so afraid of
this happening to me and JJ.  He has already been ravaged by two
cancers but even so he looks handsome and fit and I just can't handle
the thought of the "beast" (aka PCa) laying a hand on him again.  If
that happens I will enlist the help of all the courageous people and
brave soldiers here and we will arm ourselves and vanquish the pca
beast once and for all!`

The truth is that everybody here who is fighting this illness is
helping the next person, the next generation, because our treatments
provide a lot off valuable information that could someday lead to a
cure.  And for all we know it could be soon, any day, with the advances
being made in decoding the human genome.

Carolyn, you and John sound like wonderful, loving, devoted, brave
people and you deserve the best.  It sounds like you have struggled a
lot and done everything humanly possible to fight this illness. Yes,
there is sadness and gloom in your story but it is also uplifting
because of the spiritual communion you and your husband seem to enjoy.
This type of relationship is a rare but precious gift.

But, of course, the love you have for another another  makes the loss
even harder but you will get over it with time and my bet is you will
keep him close to you, in your heart, for the rest of your life.
That's what happened to me with my father.  That was the first time I
had lost a close relative.   My father passed 2 years ago and i feel
closer to him now than when he was alive.  Honestly, everytime I think
of him I feel a kind of a "warm glow". And it's not supernatural  I
just think of the nice traits he had which I would say outweighed the
bad ones and i just feel proud in a way to have had a father who was a
kind, decent, moral person, warts and all.  And he never uttered a
swear word in his entire life.  (Yes, it sounds prudish but believe me
there's more to it).

Your man sounds a lot like mine.  He is not a complainer and will
always put up a brave front.  I am sure John is concerned and
solicitous about the pain and suffering and he smiles to make you feel
better.  He sounds like a brave, decent and caring person.  But you
don't say much about him.

least comfortable and not in pain (correct me if I'm wrong).  There's
nothing bad about his resting and watching TV.  But i'm wondering,
since your wrote that you feel "confined by the four walls", if it
might be possible or helpful for you and John to go out at all if he's
able to.  Even sitting on a terrace or in a nice garden might cheer you
both up.  (I know it worked for my father who was briefly in a nursing
home and i took him out once in the sun and his face just lit up.)   It
is possible for you to get away from the "shrunken world" of cancer
even for a little while.  Maybe go on a short trip?

I have nothing but admiration for you, Carolyn. So don't feel guilty
about posting "gloomy" thing because in the darkness there is light.
And this is your group as much as anybody else's so you have a right to
express your feelings.  You actually did something courageous by
posting this message because yes, a lot of people might find this
illness gloomy and discouraging.  You post has a lot of relevance, to
me, anyway.

I don't know how much time John has left.  You didn't really give any
details but I'm curious.  It sounds like he visits a hospice but
resides at home.  It would be nice if you told us something about John
because I'm not familiar with his struggle with pca. But I am confident
that he will get good care in the hospice.  I hear that all the time.

Also, it sounds like both you and John have done your best to see the
"hope in despair", "the light in the darkness" and even find some "joy
in this sadness".  You have consoled each other and given love to each
other and know that every time you do that you are making the world a
better place.  I really believe that.

You wrote that the hospice is trying to help you both face John's
death.  All I can say is that if his time has come I wish him Godspeed
on his journey and for you, peace.  As it is written: "There is a
season for everything, a time to be born, a time to die, a time to
plant and a time to be uprooted? (Eccl. )  It's part of nature.

I'm not much of a theologian or even religious but I I believe there
is some order in the universe, maybe it's karma or whatever. According
to many religious traditions, if it's a person's time to leave the
world and it has been so ordained by destiny or karma or God then
there's nothing and there's nothing a person can do to change it.  The
late mystic Edgar Cayce (whom i don't know if you heard of out in
England), seemed to have some clairvoyant powers and he was a good man
who conducted himself well and and healed many people "telepathically"
while in a trance. I really believe he was "tuned into" some higher
power (energy).

Anyway, when he was asked by a disciple:  "How should one pray for a
sick person"? he answered, You should say, "Lord, thy will be done".
In other words, god or some higher power has a master plan for the
universe that we can't discern and so Cayce said basically, "Dont ask
God to heal somebody, because maybe it's just not possible."  Ask God
to "do his will" and just leave things in his capable hands.  (Pardon
this new-age digression).

You are a brave woman, Carolyn, and you will get through this alright.
I imagine the hospice would provide you with grief counseling of some
sort; otherwise it might help you to join a support group for people in
your situation.

My father, whom I was very close to, died two years ago after a
year-long illness.  At first I was depressed about the loss but now I
just feel really good about him, I kinda feel him close to me (not in a
supernatural sense) and I just think about what a fine, decent, kind
person he was and I am glad that he was my dad in spite of him having
been a poor parent in most areas.

When my father died I had an almost mystical experience.  He had had a
stroke and at the end experienced kidney failure and was in a coma for
the last few days of his life.  I went to the hospital to see him and I
felt bad because I hadn't been there in a week.  He just looked
completely out of it; his eyes were glazed.

I am embarrassed to relate what happened then because it sounds like a
Hallmark card,  but I said to my Father, "You will live forever in my
heart and if you want to "move on" you should not hesitate because
Mommy and the rest of us will be Ok."  (I've watched to many shows
about "crossing over" to the "other side"?)

When my father heard this, tears streamed down his face (in spite of
him being in a coma, according to the docs?).  So I know he had
understood me. Anyway, after that conversation i went out for 15
minutes to get some coffee and when i came back he was gone.  I thought
it was really nice of him to wait for me to visit before he died so
that I could say goodbye and he even gave me the courtesy of not
expiring right in front of my face bec. that would have been harder for
me to deal with!

You know i feel really guilty because it has occurred to me many times
that my husband"s and father's illnesses werer almost worth it -- I
repeat almost -- because they brought about so many acts of kindness by
strangers.  Of course my father and husband would not appreciate that
thought but there really is a silver lining in all this.

I could write a book about the help people in charitable orgs gave me
in helping me choose the right treatment for my husband and giving me
all sorts of information on how to finance his illness "creatively".
For example, many people want to go to Sloan-Kettering for treatment
but in order to do so they have to switch insurances.  I had already
ruled out MSK because of that but then I found out that it can be done
and so had another excellent option.  I would not have known about this
if the person at this org. didn't tell me.  There were a couple of
nonprofit orgs that i consulted and the people i spoke to were very
kind and helpful.  They offered me 24-hour emotional support, for
example. The volunteers gave me their cell phone nos. and said if I was
feeling bad or whatever to call them at any hour."  Fortunately I did
not need that kind of help.

But to me this was the most amazing thing: We live exactly 2.3 miles
from New York Hosp. where my husband was operated on and so I would
have had to take buses or taxis to visit him in the hosp because we
don't have a car and the traffic there is horrible (in Manhattan).
Nevertheless, although it was was inconvenient for us to get to the
hospital, it was certainly doable.  However, somebody put me touch with
an org. that helps relatives of patients in local hospitals  find
accommodation close by.   What happened was that this org had a
cancellation or something for a hotel room and they offered it to us.
It was a real blessing to be a stone's throw from the hosp.

I think this is the nicest thing anyone has every done for me in my
whole life.  My husband's op  was on Saturday morning and we stayed at
the hotel Friday night and my husband woke up at 9:00 a.m., took a
shower and made it to his appt. at 9:30.  Because the surgical unit was
closed on Saturday there was not another person in sight and I didn't
want to sit in an unlit waiting room so I went "home" and waited there
until the op was over.  It was a lot better than sitting in a dark,
deserted lounge.  I had lunch in the patio which was nice.

We were both very relaxed in this atmosphere -- it think it was just
the change of scenery that helped.  The suite they gave us was like a
real apt., (It was a converted apt. building) and it had a lazy boy
chair in the living room, even a patio (OK what you folks would call a
backyard")  I can't express how much having this hotel room for three
days meant to me.  My husband was in the hosp for a couple of days
after his RLRP because he had a fever.  So, naturally i spent a lot of
time with him but then I didn't have to worry about the trip home.  It
was really convenient.  Not only that but the staff at this hotel were
extremely nice and caring and were willing to do anything to
accommodate you.  They went out of the way because they know that that
most of the guests in the hotel are there to visit sick relatives.
Also, the room was very comfortable.  They even offered us a choice of
pillow: swedish, regular and buckwheat. And we had a nice king size bed
which was a big improvement over our "full-size" one that we have at
home.

Sorry to go on about this but this "gift" of the hotel suite meant so
much to me I just can't describe it. It made my husband's surgery
easier for both of us.

You have to understand that the prices of hotels near NY Hosp and MSK
are exorbitant (they wanted $350 for a 2-star hotel) and I happen to
know the retail price for the room we were given was $550 a night
(probably the org got a discount). I really hope the stranger who
donated approx. $1,500 so that I could be close to my husband in the
hosp goes to heaven or nirvana or another good place.  Amen.

Also, about the kindness of strangers:  I want to do something I've
never done before which is to praise the doctors, nurses and other
medical personnel who are often under appreciated or even reviled.  I
haven't encountered a whole lot of exceptional doctors but they are out
there.  I wish I knew how to find them.

As a matter of fact, everybody i know here in NYC has a litany of
complaints about how they or their loved ones were treated by medical
personnel.  So I just wanted to point out that there are exceptions to
this, there are actually loving, caring doctors and nurses who are true
healers and do what they do because it's a "calling."

Here's one beautiful story that somebody in this group posted a few
weeks ago about a caring nurse and I would like to cite it because
someday we will all end up in the care of strangers and this story is
really uplifting;  When I read it originally my husband had already
gone to sleep and I actually woke him up to read this to him.  But it
was so beautiful and moving that he actually thanked me for waking him
up!  We all need to know that there are good people around.

Here is the quote:

"The nurses, for example, were responsive, compassionate, and
consummately professional. My third day in hospital, a matronly Black
lady in whites came into my room and announced, "Come on! Get up!
You're taking a shower." She proceeded to give me the only shower that
I can ever remember being "given" by another person at any time in my
adult lifetime. What I found extraordinary was that I felt no
discomfort or embarassment with her as she washed my body as thoroughly

as I would myself under normal circumstances. I actually felt moved by
the experience, with a sense of gratitude that was more profound than
my simple "Thank you" could have expressed. I attribute this feeling
entirely to her kind and caring manner. It was simply part of what she
does with patients, I could tell. Even my wife, who was present in the
room when the nurse took me in the bathroom, commented afterward
"That's a REAL nurse."

Whoa! The part about washing the body sounds almost biblical.  Thanks
for sharing this with us and since no good deed goes "unpunished" I
hope you will pass on this praise to the hospital.

Here is another example of a dedicated, decent doctor who's not in it
just for the money.

I recently got a letter from a doctor I had seen some years ago.   I
didn't know him well at all but I remember him being courteous,
attentive and respectful and he is highly regarded in his field.
Anyway, out of nowhere I get a letter from him a couple of months ago
saying his health is failing and he has no choice but to close his
practice.  But instead of just sending a pro forma letter to his
patients he really seemed to put a lot of energy and thought into
writing a very special farewell note and I know it came straight from
the heart! I hesitate to quote it because it's a bit "touchy feely" but
I know it's sincere and that's what really grabbed me about it.  I have
to tell myself that there are doctors out there who are not just
moneygrubbing idiots but are genuine healers like Dr. S.  When you come
across a good doctor by all means advertise it.

Here is the letter from the doc:

To my patients:

It has been a great privilege and an honor that you have entrusted me
with helping with your personal health care and I thank you from the
bottom of my heart.  [It's with much grief that I write this but I
think it's best I cease practicing...]

This has been a difficult decision to arrive at because I have enjoyed
a wonderful and gratifying life thanks completely to you.  I have
agonized over this for quite some time it is not a snap decision.

[List other doctors for referral]

I hope you know how much I love you.

Sincerely,

E. Thomas Steadman, M.D.

Anyway it's unusual but I am very glad to have received it and admire
the doc for being so honest.

I just wanted to add one more thing about the kindness of strangers.
As I mentioned my father was critically ill for a year and was mostly
in the hospital ICU or a similar unit.  My father had a stroke that
paralyzed him on both sides, he had aphasia (language problems) to some
extent and worst of all he was attached to a ventilator.  He was in an
absolutely helpless position.  On top of this he was conscious, aware
of his surroundings.

I'm sorry to say that the care he received at two hospitals, Lutheran
and Maimonides, was really substandard. These hospitals in my opinion
were straight out of Dante's inferno.

The result was that my mother and my siblings tried to be there to care
for my father 24 hrs. a day, 7 days a week just to see that he got
basic care.  The alternative was that he could be seriously neglected,
as in, once they just didn't bother to feed him for a couple of days,
etc.  Everything was self-service:  My routine when I arrived to visit
him would be to go to the medical supply closet to see if I  needed
anything, then go the linen closet and so forth. .  My younger brother
was given an insrruction sheet from the physical therapist on how to do
the therapy ourselves because the hosp didn't provide it so my brother
and I became the de facto physical therapists.

Anyway, my point is that it was impossible for us to be with Dad all
the time and we couldn't afford a round the clock nurse the way some
people had.  The solution was that my sister found an organization that
would send volunteers to stay with patient in hospitals so their
families don't have to worry about them all the time (this kind of
neglect is prevalent).  ; They were all people who had families, who
worked all day and then came to spend the evening or stay overnight
with a sick person. I can't tell you how many of these volunteers
participated but it was a whole lot.  If we hadn't had these wonderful
people helping us we would have have had no peace of mind.

I'm sorry again to go on for so long but I got a bit carried away with
the subject.  I have wanted for a long time to talk about the goodness
of people rather than the other way around.  When I am down I think of
the kindness of strangers and it just perks me up.  It's the best
"spiritual" medicine for me.

I am signing off now @ 5:51 am and so I am just praying that any of
this will make sense when I reread it tomorrow.

The last thing I wanted to say was to try to lighten the mood a little
bit because we all need some humor.  Here is my favorite prayer:  It
goes like this (translated liberally):

"Lord, make me virtuous, but not just yet"

--Augustine of Hippo

I think this man had the right idea.  He wanted to enjoy the pleasures
of life for as long as he could (before becoming a saint?)  Likewise,
you and John should make the best of your time together to have fun and
create memories you will treasure.  You will want to remember him
happy, I am sure.

Finally, I offer you both a traditional blessing:.

"May God bless you and keep you and shine his countenance on you and be
gracious to you; May he lift his face toward you and give you PEACE."

I hope all goes well with you both.  Keep us posted.  And thank you
again for bringing up such a difficult subject.

(I can't apologize enough for going on so long.  But the truth is that
writing about these "kindnesses' of other people was a healing exercise
for me.)

Love to you both,

Leah and Jonathan

Carolyn,

My thoughts and prayers are with you and your husband.  I read this NG
sporadically, and just happened to "drop by" this morning and saw your post.
My husband was diagnosed with PCa in 1996.  His prostate was removed in Sept
'96 and all psa tests clear for 10 years.

He was diagnosed with non small cell lung cancer in June of this year and
died just 4 months later; Oct 17. 2006, one week after our 25th wedding
anniversary.  We too had Hospice and what a wonderful organization.  They
are all angels.

Carolyn, the reason I am posting is to offer prayers, friendship, and
support.  If you have questions or want to vent or cry, please email me.
Also, this is a wonderful ng filled with caring, supportive people, so if
you need to, please hang around.

Cori

My thoughts and prayers are with you both, Carolyn, at this time.   Your
post was very moving and I wish you peace.

Dora