Opinions, please

You all know that Don has been feeling weaker, coughing more, etc., and he
went to the doctor who said his lungs sound clear, his blood counts are
within normal ranges except for platelets, and that he doesn't have to come
back for three weeks except for the weekly blood count check.

My son took Don to the onc. so my daughter called the nurse yesterday and
read her my list of concerns. The nurse responded with, "It's normal for him
to still be weak from the chemo, and he might be weak two months from now,"
and that he probably won't have the CT scan for four more weeks and that
everything else is normal so not to be worrying because his blood counts
were up and that she thought he looked good when he was there.

I think I have rehashed this doctor thing too many times on here, but it
just disturbs me, and if there's something I don't understand, I investigate
it until I get answers. That's just me.

I can't see my husband too weak to take a walk, not hungry enough to eat,
losing weight (he was weighted at the clinic, so they know this), coughing,
hurting and be satisfied with "this is normal."

I don't like vague. It's not that I want to be told, "Your husband is dying,
deal with it," it's just that I want to know what's going on here, the
truth. If they are saying, which they are saying in so many of their wishy
washy words, that he is recovering and is going to be okay after his
weakness wears off, then I want them to say it.

I am so sick of hearing the word "normal" from them that I could scream.
Then if I say, "Normal for what," they say normal for someone that's been on
chemo since November. They never say normal for someone with extensive SCLC
or tell me what to expect.

I have come to the conclusion that they're all lying to my daughter and to
me, probably my husband's wishes, so okay, I will let them think I am blind
and stupid. Do they really think I am not intuned to the person I live with
enough to know how sick he really is? Give me some credit for having a brain
for God's sake, is what I want to say to them. Is there a confidentiality
thing between a patient and a dr. where even a wife can't be told the truth.

And then what happens if he dies? I know what I'll do. I will simply ask
them, "Is this normal."

Fig, J, Una, Alayne, Betsy and every other one of you are right ... I am
through worrying about something I can't control, and if they want me to
believe everything is "normal," then fine. I will. One cannot say something
is normal without giving a more detailed explanation of what normal is in
terms of any condition.

Don is getting very tired of being tired and is itching to get out and play
again. He was invited out yesterday, but he told me he didn't have the
strength, so he stayed home. I don't even know how to respond anymore except
for saying, "The doctor said that was normal."

Weirded Out,
G

Giuditta schreef:
>
> Don is getting very tired of being tired and is itching to get out and play
> again. He was invited out yesterday, but he told me he didn't have the
> strength, so he stayed home. I don't even know how to respond anymore except
> for saying, "The doctor said that was normal."
>
> Weirded Out,
> G
>
>
>
>
Getting out and playing is maybe a bit to much, but if Don sits around
in the house all day, that will certainly not make him feel any better.
He needs to get out, not for hours at a time at once, even if he doesn't
feel like it, he has to go. In a wheelchair maybe, with a walking aid,
or leaning on one of your kids, but sitting in a chair all say wiil only
make him feel worse physically and mentally. And maybe Don needs
something for depression now, that is not uncommon.

As for what is normal: the nurse had better say: We see this very often,
but right now, you can't tell if it's from the chemo or from the cancer.
That's the only honest thing to say. His bloodcounts are up, so he
should feel a bit better and his liver is function alright. But like I
said before, sitting around the house doesn't do him any good right
now. What does he do all day? Does he like reading or the computer, or
is he sitting in front of the television? Does he help out in the house
a bit, I mean really small things, just trying to find something to do?

Anne

Giuditta <jmarrs@myspeedworks.com> wrote:
> Is there a confidentiality
>thing between a patient and a dr. where even a wife can't be told the truth.

Absolutely, if that is what the patient wants.

Focus on palliative care. Has Don got something now to control
his nausea? And you mentioned not just nausea but also vomiting.
That alone is enough to cause loss of apetite, extreme weakness,
lethargy, and coughing (sore throat, may be raw even if morphine
eases the soreness).

Are the redbuds blooming where you are? Is the weather nice?

How about a car ride to some lovely spot not far from home that
you both like, with a picnic of his favorite goodies (caviar and
vodka, smoked salmon, ice cream bars, pizza, fritos, pretzels
and beer, pork rinds, BBQ ribs, chocolate, raspberries...?) and
some blankets and pillows. Think comfort. Comfort food. Feed
the body and the soul.

Good vibes to you.

Una

"starfleet" <starfleet1960@hotmail.com> wrote in message
news:4620fabc$0$719$5fc3050@dreader2.news.tiscali. nl...
> Giuditta schreef:
>>
>> Don is getting very tired of being tired and is itching to get out and
>> play again. He was invited out yesterday, but he told me he didn't have
>> the strength, so he stayed home. I don't even know how to respond anymore
>> except for saying, "The doctor said that was normal."
>>
>> Weirded Out,
>> G
>>
>>
>>
>>
> Getting out and playing is maybe a bit to much, but if Don sits around in
> the house all day, that will certainly not make him feel any better. He
> needs to get out, not for hours at a time at once, even if he doesn't feel
> like it, he has to go. In a wheelchair maybe, with a walking aid, or
> leaning on one of your kids, but sitting in a chair all say wiil only make
> him feel worse physically and mentally. And maybe Don needs something for
> depression now, that is not uncommon.
>
> As for what is normal: the nurse had better say: We see this very often,
> but right now, you can't tell if it's from the chemo or from the cancer.
> That's the only honest thing to say. His bloodcounts are up, so he should
> feel a bit better and his liver is function alright. But like I said
> before, sitting around the house doesn't do him any good right now. What
> does he do all day? Does he like reading or the computer, or is he sitting
> in front of the television? Does he help out in the house a bit, I mean
> really small things, just trying to find something to do?
>
> Anne

Anne,
He doesn't do anything but sit in his recliner in front of the tv. He wasn't
asked to go play but our friend was just going to take him for a ride to the
guitar center ... this is the seond time he has refused to go.

Mimi and I asked him today if he wanted to go to our grandson's birthday
party, which will be family only, and he can sit there but be among us...he
said he didn't feel like it, so Mimi and I are going, and Cheyenne will stay
here with Don.

I have been wondering about his energy level because I feel that sometimes a
person has to push to get that energy back, but I have been afraid to
mention it because this is cancer, not just a simple condition.

I have asked him to walk even if it's a few times down the hall, but he says
he doesn't have the strength. I was fussing at Cheyenne this morning about
cleaning up his room, nothing big just the normal mom saying your room looks
like Katrina hit it, and Don over heard us and said he didn't have the
energy to hear us going on about it...

It kind of irritated me because I feel that I can tell my son to clean his
room if he's let it go a few days...dirty clothes on floors, waste basket
needing emptied, the pathway filled with guitars, mics, drum stands, and
etc...the only thing that really bothered me was the waste basket where he
might throw a half eaten McDonald's meal, and I can't take a place with
odors like that...and the clothes that need to be in the hamper ...

Anyway, it wasn't even a big deal, but Don avoids any type of strife or
confrontation...he's the epitomy of peace, but I work my butt off keeping
things sanitary and am not letting my teenager's room scents of old food
float through to the rest of the place...

It's like Don doesn't have the energy for anything physical or mental. The
dr. has asked him if he needs antidepressants, but he says no, of course.
Then I don't push the exercise issue because I'm thinking maybe he really is
too weak.

G

"Una" <una@att.net> wrote in message news:evr1pg$m00$1@doliolum.localnet...
> Giuditta <jmarrs@myspeedworks.com> wrote:
>> Is there a confidentiality
>>thing between a patient and a dr. where even a wife can't be told the
>>truth.
>
> Absolutely, if that is what the patient wants.
>
> Focus on palliative care. Has Don got something now to control
> his nausea? And you mentioned not just nausea but also vomiting.
> That alone is enough to cause loss of apetite, extreme weakness,
> lethargy, and coughing (sore throat, may be raw even if morphine
> eases the soreness).
>
> Are the redbuds blooming where you are? Is the weather nice?
>
> How about a car ride to some lovely spot not far from home that
> you both like, with a picnic of his favorite goodies (caviar and
> vodka, smoked salmon, ice cream bars, pizza, fritos, pretzels
> and beer, pork rinds, BBQ ribs, chocolate, raspberries...?) and
> some blankets and pillows. Think comfort. Comfort food. Feed
> the body and the soul.
>
> Good vibes to you.
>
> Una


A picnic sounds wonderful. but he won't do it. His whole world revolves
around music, and if he were to go anywhere, it would be something music
oriented. Unfortunately, I'm not a picker, so the picnic wouldn't be fun for
him...A guy we know wrote a song once, "Music is my Woman," and I identified
with that.

If you know anyone in the music business, the pros, this is how they
are...the show must go on is for real...Don reads and watches tv, and I
think he's mourning his loss of strength to play even though he says he
isn't, but when he says he's not strong enought to even sit at electric
drums with headsets that don't take much effort...I know then that he really
is at his weakest point.

This is why I have had to make a life for myself, wrapped up in my kids,
teaching and writing through the years...it doesn't hurt my feelings, I knew
what he did when I married him and love him for being the kind person that
he is, but I do have my own life, too.

Hope I don't sound mean ... it's just the way I have made sure that I had a
life and was not just an extension of him because I can't do like some wives
and attend every gig like some groupie or fans ... it might sound odd that
we can be happy and care about each other when we seem to have been apart so
much, but it's worked for us. We respect each other so much and are best
friends through it all. I think he has loved me so much because I allow him
to be himself without nagging about it. Many couples in music don't make it
in marriage, but we have.

G

Giuditta wrote:

>
> Fig, J, Una, Alayne, Betsy and every other one of you are right ... I am
> through worrying about something I can't control, and if they want me to
> believe everything is "normal," then fine. I will. One cannot say something
> is normal without giving a more detailed explanation of what normal is in
> terms of any condition.
>
> Don is getting very tired of being tired and is itching to get out and play
> again. He was invited out yesterday, but he told me he didn't have the
> strength, so he stayed home. I don't even know how to respond anymore except
> for saying, "The doctor said that was normal."

Unfortunately, that's the way it is with someone who has such widespread cancer.

The chemo and the cytokines and probably feeling down about it all.
<http://www.cancerbackup.org.uk/Resourcessupport/Symptomssideeffects/Fatigue/Causes>

J

"J" <nexsw@nvalid,anon> wrote in message
news:46211C68.9A190C@execulink.com...
> Giuditta wrote:
>
>>
>> Fig, J, Una, Alayne, Betsy and every other one of you are right ... I am
>> through worrying about something I can't control, and if they want me to
>> believe everything is "normal," then fine. I will. One cannot say
>> something
>> is normal without giving a more detailed explanation of what normal is in
>> terms of any condition.
>>
>> Don is getting very tired of being tired and is itching to get out and
>> play
>> again. He was invited out yesterday, but he told me he didn't have the
>> strength, so he stayed home. I don't even know how to respond anymore
>> except
>> for saying, "The doctor said that was normal."
>
> Unfortunately, that's the way it is with someone who has such widespread
> cancer.
>
> The chemo and the cytokines and probably feeling down about it all.
> <http://www.cancerbackup.org.uk/Resourcessupport/Symptomssideeffects/Fatigue/Causes>
>
> J


I read it all. I assume he's weak from a combination of cancer and chemo
from what I read. He's just sick and tired from everything. I asked him
again if he needed any antidepressants, and he said no that he wasn't
depressed...

Mimi and I went to the bd party, and Cheyenne made it home soon after we
left, and Don was fine with it...truth be known, he was probably glad to
have some time to himself for a change.

Thanks again for the info.

G/J

Giuditta wrote:

> "J" <nexsw@nvalid,anon> wrote in message
>
> > Giuditta wrote:
>
> >> Don is getting very tired of being tired and is itching to get out and
> >> play
> >> again. He was invited out yesterday, but he told me he didn't have the
> >> strength, so he stayed home. I don't even know how to respond anymore
> >> except
> >> for saying, "The doctor said that was normal."
> >
> > Unfortunately, that's the way it is with someone who has such widespread
> > cancer.
> >
> > The chemo and the cytokines and probably feeling down about it all.
> > <http://www.cancerbackup.org.uk/Resourcessupport/Symptomssideeffects/Fatigue/Causes>
> >
> > J
>
> I read it all. I assume he's weak from a combination of cancer and chemo
> from what I read. He's just sick and tired from everything. I asked him
> again if he needed any antidepressants, and he said no that he wasn't
> depressed...
>
> Mimi and I went to the bd party, and Cheyenne made it home soon after we
> left, and Don was fine with it...truth be known, he was probably glad to
> have some time to himself for a change.

Thanks G.
I was thinking, which can be a dangerous thing.
First of all there's a bad case of "nerved up" in your family.
I think I recall Cheyenne having a panic attack, just as he was leaving the house, a while
back.
And you seem very jittery. And you mentioned your husband's hands shaking.

In addition, your home is like when someone's husband retires. Since he was on the road so
much, each person finds their space(s) encroached on and routines changed. X10 with the
cancer diagnosis and trips. So maybe that is part of the answer. Giving him some time
alone, every few days and better for you to get out somewhere where there's babies, if
that's your idea of pleasure.

Try not to think too far ahead, G. If his affairs are in order. (and if they are not,
you'll muddle through it if/when required).
Remember that he could have had a vehicle accident or plane crash or heart attack with no
warning (when he was on the road, all those years).
We only have today, so go out when possible. You can't always control what happens by
staying closeby.

Hugs
J

On Apr 14, 6:26 pm, "Giuditta" <jma...@myspeedworks.com> wrote:
> You all know that Don has been feeling weaker, coughing more, etc., and he
> went to the doctor who said his lungs sound clear, his blood counts are
> within normal ranges except for platelets, and that he doesn't have to come
> back for three weeks except for the weekly blood count check.
>
>
> Weirded Out,
> G

Hi G,

My opinion 'normal' means normal for someone who has had chemo and has
extensive cancer.
Have you tried high calorie food drinks for Don, they come in nice
flavours are easy to digest, and go down easy. I don't know how Don
feels but my sensation re food is that I feel both hungry and full at
the same time, I can only eat very small portions and try to do this
frequently. If someone places a large portion of food in front of me,
my ability to eat anything just goes. High protein drinks help me.

As far as sitting in front of the TV all the time, one can easily get
stuck there - but on the other hand socialising can be really
exhausting. Short quite undemanding breaks outside in the fresh air
are helpful to lift the sprit, and seeing, smelling, touching, some of
Gods creation can bring an inner feeling of peace. It can be hard to
just get out the door, putting on outdoor clothes and shoes, preparing
for the world, is tiring in itself, however if Don can get it together
just for a short time 2 or 3 times a week, without feeling he has to
'switch on the lights' for friends or others, it may boost quietly
his feeling of participation in life. I don't mean doing too much,
going to gigs and so on, that can come later, as his strength grows,
now is the time to slowly try and rebuild a little strength - baby
steps -

Sitting in front of the TV is a great escape for the mind,
unfortunately it saps physical energy.
Reading between the lines I guess he is very disappointed that he is
still ill, he had so much faith that the chemo would heal him, thats a
tough call for him to deal with.

Would it help if you sat down and talked together, explain to him that
you need to know what the doctor is saying and ask him to give
permission for the doctor to talk to you. You need information so you
can do everything possible to care for Don, some of his symptoms may
be nothing to do with the cancer or the chemo. Your not knowing these
things, just makes it harder for you to understand what is going on
and to do the best you can for him, and possibly causes you more
stress and worry about the unknown than if you had the straight
facts.

Just my take on things.

Take some time for you.

Blessings
isi

"J" <nexsw@nvalid,anon> wrote in message
news:4621FF2E.940A07D9@execulink.com...
> Giuditta wrote:
>
>> "J" <nexsw@nvalid,anon> wrote in message
>>
>> > Giuditta wrote:
>>
>> >> Don is getting very tired of being tired and is itching to get out and
>> >> play
>> >> again. He was invited out yesterday, but he told me he didn't have the
>> >> strength, so he stayed home. I don't even know how to respond anymore
>> >> except
>> >> for saying, "The doctor said that was normal."
>> >
>> > Unfortunately, that's the way it is with someone who has such
>> > widespread
>> > cancer.
>> >
>> > The chemo and the cytokines and probably feeling down about it all.
>> > <http://www.cancerbackup.org.uk/Resourcessupport/Symptomssideeffects/Fatigue/Causes>
>> >
>> > J
>>
>> I read it all. I assume he's weak from a combination of cancer and chemo
>> from what I read. He's just sick and tired from everything. I asked him
>> again if he needed any antidepressants, and he said no that he wasn't
>> depressed...
>>
>> Mimi and I went to the bd party, and Cheyenne made it home soon after we
>> left, and Don was fine with it...truth be known, he was probably glad to
>> have some time to himself for a change.
>
> Thanks G.
> I was thinking, which can be a dangerous thing.
> First of all there's a bad case of "nerved up" in your family.
> I think I recall Cheyenne having a panic attack, just as he was leaving
> the house, a while
> back.
> And you seem very jittery. And you mentioned your husband's hands
> shaking.
>
> In addition, your home is like when someone's husband retires. Since he
> was on the road so
> much, each person finds their space(s) encroached on and routines changed.
> X10 with the
> cancer diagnosis and trips. So maybe that is part of the answer. Giving
> him some time
> alone, every few days and better for you to get out somewhere where
> there's babies, if
> that's your idea of pleasure.
>
> Try not to think too far ahead, G. If his affairs are in order. (and if
> they are not,
> you'll muddle through it if/when required).
> Remember that he could have had a vehicle accident or plane crash or heart
> attack with no
> warning (when he was on the road, all those years).
> We only have today, so go out when possible. You can't always control what
> happens by
> staying closeby.
>
> Hugs
> J


Yep, we're nerved up here. What is that line of Jack Nicholson's in As Good
As It Gets? Sell crazy somewhere else, we're all stocked up here ... that's
us.

You really remember a lot. How do you do that? I had forgotten about
Cheyenne's panic attack, and now that I think back on it, he might have
wanted sympathy so I wouldn't be more interested in the disaray of his room.
He's a smart little fox. He hasn't had any "panic attacks" since.

You are soooooooooo right about what you said about when someone retires and
going through that sort of thing. I think Don is doing better at this than I
am. He's a people person although he likes his time at home when he can
chill out and not have to "entertain," but he has made the comment that if
I'm in the room where he's watching tv that he feels like he has to
entertain me...that's the dumbest thing I've ever heard. Maybe he's just not
accustomed to being home and that makes him feel that way.

I'm a person who will help anyone out, I have fun at work with my coworkers,
we laugh and talk, my kids and nieces and nephews are always acting goofy
and laughing with me, but the other part of me is a loner (not the type
loner that kills presidents), but I think most writers are loners.

My relaxation is coming back here or out on the balcony with a book or pad
and pen...not being with babies although I love them. And movies. While
writing movie reviews for the paper, I got into them and even joined a
screenwriter ng and wrote one last year.

I like my space, too, but I don't have that anymore any place I go. I
realize how horrid that sounds with the condition my husband is in, but our
marriage has been more long distance than all up on each other, but we have
managed to stay close in other ways.

Don is more comfortable being around a lot of people than I am. Even on the
road, the bus was a nice customized vehicle. but the whole band was there.

He has the whole day to himself now, even though Mimi is here she stays in
her room most the time where she can read, be online or watch her season tv
DVDs...Cheyenne is usually in his room recording...Donnie is out of town
most the time...All this rambling...sorry.

But we did go to the party, the birthday boy spent the night with us, and I
could hear him and Don up all hours chatting away in the tv room...He's
taught Daylen to play drums, he's only 9 and thinks his grampy hung the
moon.

Maybe it's me. For real, maybe it's me that Don feels uncomfortable around.
Mimi told me yesterday that he doesn't like for me to look all sad and
concerned, that it makes him feel worse. I didn't realize that I had been
looking that way. She said that I have, but if I do, I think it's because I
have so many things on my mind even besides the cancer.

I can't run from responsibilities and feel that I need to be constantly
figuring out what to do that's either job related or home related. I've
always done these things, but with this cloud hanging over us, it's harder.
I pray myself to work many days after not sleeping much. I even felt angry
when she said that because Don doesn't have a clue what it's like to be the
one here, taking care of a big family and dealing with day-to-day things
that come up.

I thought, if they're so not wanting to see me with a concerned expression,
I could do what many women have fleeting thoughts about, running off to
Kansas and working as a waitress at some obscure diner, hiding from the
world. As crazy as I sound on here, I have had to be the one here on call
24/7, being sensible, raising children, etc. And they don't like me looking
concerned?

I wish I had gone to Florida with my son's band Friday and hung out on the
beach for three days ... I thought about it but knew I was needed here.
Sorry for the long post, J. I'm going to become a new me.

Have a blessed Sunday,
G/J

"Giuditta" <jmarrs@myspeedworks.com> wrote in message
news:4BoUh.39$X05.77@eagle.america.net...
>
>
> Maybe it's me. For real, maybe it's me that Don feels uncomfortable
> around. Mimi told me yesterday that he doesn't like for me to look all sad
> and concerned, that it makes him feel worse. I didn't realize that I had
> been looking that way. She said that I have, but if I do, I think it's
> because I have so many things on my mind even besides the cancer.
>
> I can't run from responsibilities and feel that I need to be constantly
> figuring out what to do that's either job related or home related. I've
> always done these things, but with this cloud hanging over us, it's
> harder. I pray myself to work many days after not sleeping much. I even
> felt angry when she said that because Don doesn't have a clue what it's
> like to be the one here, taking care of a big family and dealing with
> day-to-day things that come up.
>
> I thought, if they're so not wanting to see me with a concerned
> expression, I could do what many women have fleeting thoughts about,
> running off to Kansas and working as a waitress at some obscure diner,
> hiding from the world. As crazy as I sound on here, I have had to be the
> one here on call 24/7, being sensible, raising children, etc. And they
> don't like me looking concerned?
>

Maybe we are living parallel lives in a way. I'm also the one taking on the
responsibilities here, though in my case I've been delegating a lot lately.
I put my daughter on laundry, cat care, and back up for Rob. Mike is on
kitchen clean-up, bill paying (new, he doesn't even realize it yet), and
back up for Rob. Each know how to give him his insulin shots, when to give
them, and how much and where his medications are kept. The rest of the
household chores are either divided up or not done. My house is a mess.

Privacy here is also at a premium, though we've had almost 5 years to adjust
to Rob being at home 24/7. Before that, being in the military, he was often
gone for months at a time, and even when he was in garrison, he was often at
work until after 7 pm and on call for the weekends. We still have friction
moments, but we're getting through it.

Pam S.

"Tanada" <tanada@earthlink.net> wrote in message
news:LjrUh.1142$j63.482@newsread2.news.pas.earthli nk.net...
>
> "Giuditta" <jmarrs@myspeedworks.com> wrote in message
> news:4BoUh.39$X05.77@eagle.america.net...
>>
>>
>> Maybe it's me. For real, maybe it's me that Don feels uncomfortable
>> around. Mimi told me yesterday that he doesn't like for me to look all
>> sad and concerned, that it makes him feel worse. I didn't realize that I
>> had been looking that way. She said that I have, but if I do, I think
>> it's because I have so many things on my mind even besides the cancer.
>>
>> I can't run from responsibilities and feel that I need to be constantly
>> figuring out what to do that's either job related or home related. I've
>> always done these things, but with this cloud hanging over us, it's
>> harder. I pray myself to work many days after not sleeping much. I even
>> felt angry when she said that because Don doesn't have a clue what it's
>> like to be the one here, taking care of a big family and dealing with
>> day-to-day things that come up.
>>
>> I thought, if they're so not wanting to see me with a concerned
>> expression, I could do what many women have fleeting thoughts about,
>> running off to Kansas and working as a waitress at some obscure diner,
>> hiding from the world. As crazy as I sound on here, I have had to be the
>> one here on call 24/7, being sensible, raising children, etc. And they
>> don't like me looking concerned?
>>
>
> Maybe we are living parallel lives in a way. I'm also the one taking on
> the responsibilities here, though in my case I've been delegating a lot
> lately. I put my daughter on laundry, cat care, and back up for Rob. Mike
> is on kitchen clean-up, bill paying (new, he doesn't even realize it yet),
> and back up for Rob. Each know how to give him his insulin shots, when to
> give them, and how much and where his medications are kept. The rest of
> the household chores are either divided up or not done. My house is a
> mess.
>
> Privacy here is also at a premium, though we've had almost 5 years to
> adjust to Rob being at home 24/7. Before that, being in the military, he
> was often gone for months at a time, and even when he was in garrison, he
> was often at work until after 7 pm and on call for the weekends. We still
> have friction moments, but we're getting through it.
>
> Pam S.
Yes, our lives are quite similar aren't they. You're smart to delegate,
which I have also been told to do. I guess we just do what needs to be done,
but some things get left out like you said. I should become more organized
about it like you are.

It's strange when they're suddenly home all the time. I used to think that
when we got to that point in life where he would be home that we would have
time to enjoy things togsther, but now he's too weak. Honestly, he probably
wouldn't want to do those things anyway like picnics, walks, etc. He would
be dragging me to a gig somewhere...and now I am praying that he will be
here to drag me...

Hugs and peace to you and yours, dear.
G

<islavision2004@yahoo.com> wrote in message
news:1176637000.071090.129650@b75g2000hsg.googlegr oups.com...
> On Apr 14, 6:26 pm, "Giuditta" <jma...@myspeedworks.com> wrote:
>> You all know that Don has been feeling weaker, coughing more, etc., and
>> he
>> went to the doctor who said his lungs sound clear, his blood counts are
>> within normal ranges except for platelets, and that he doesn't have to
>> come
>> back for three weeks except for the weekly blood count check.
>>
>>
>> Weirded Out,
>> G
>
> Hi G,
>
> My opinion 'normal' means normal for someone who has had chemo and has
> extensive cancer.
> Have you tried high calorie food drinks for Don, they come in nice
> flavours are easy to digest, and go down easy. I don't know how Don
> feels but my sensation re food is that I feel both hungry and full at
> the same time, I can only eat very small portions and try to do this
> frequently. If someone places a large portion of food in front of me,
> my ability to eat anything just goes. High protein drinks help me.
>
> As far as sitting in front of the TV all the time, one can easily get
> stuck there - but on the other hand socialising can be really
> exhausting. Short quite undemanding breaks outside in the fresh air
> are helpful to lift the sprit, and seeing, smelling, touching, some of
> Gods creation can bring an inner feeling of peace. It can be hard to
> just get out the door, putting on outdoor clothes and shoes, preparing
> for the world, is tiring in itself, however if Don can get it together
> just for a short time 2 or 3 times a week, without feeling he has to
> 'switch on the lights' for friends or others, it may boost quietly
> his feeling of participation in life. I don't mean doing too much,
> going to gigs and so on, that can come later, as his strength grows,
> now is the time to slowly try and rebuild a little strength - baby
> steps -
>
> Sitting in front of the TV is a great escape for the mind,
> unfortunately it saps physical energy.
> Reading between the lines I guess he is very disappointed that he is
> still ill, he had so much faith that the chemo would heal him, thats a
> tough call for him to deal with.
>
> Would it help if you sat down and talked together, explain to him that
> you need to know what the doctor is saying and ask him to give
> permission for the doctor to talk to you. You need information so you
> can do everything possible to care for Don, some of his symptoms may
> be nothing to do with the cancer or the chemo. Your not knowing these
> things, just makes it harder for you to understand what is going on
> and to do the best you can for him, and possibly causes you more
> stress and worry about the unknown than if you had the straight
> facts.
>
> Just my take on things.
>
> Take some time for you.
>
> Blessings
> isi


Have you been a fly on the wall around here, you got it all right. Do you
really think it's possible for Don to get strength back? I have thought
about pressing more about him taking a walk even a few times down the hall,
but he is perched in his chair with the electric throw on him, snuggled in
front of the tv.

I haven't been in his situation, so I don't know how he feels. I've always
been the type to trudge on even when I have been sick, had C-sections, other
surgery because I've had to. In fact, from being a kid, my mom never let us
give in to sickness...I remember having our son and Don was on the road...I
could barely walk, but she made me come to the table for dinner...no meals
in bed for me...it was maddening, but now I'm glad she did it.

But what Don has is more serious than anything I've ever had to deal with,
so I can't identify with it. I just take him at his word that he's too weak
to do anything. He's not enjoying this rest at all, and I can feel his mood
getting tired of being tired.

I have offered him drinks for energy, but he doesn't have much of an
appetite for anything now. I do put smaller portions on his plate because he
has suggested himself that I do that since he doesn't eat much.

Mainly, he drinks orange juice and milk, and that's about all we can get him
drink. He thought he wanted a McDonald's burger today, so my daughter got
him one with fries, but he said it didn't taste right, and he didn't touch
the fries. Just recently has he quit eating much.

I told him about taking baby steps to get back strength, but he said he's
too tired.

He just called me from his end of the place to come watch the Sopranos with
him, so I'm going...back at you soon...thanks for the feedback.

Giuditta

"Giuditta" <jmarrs@myspeedworks.com> wrote in message
news:aBzUh.56$X05.368@eagle.america.net...
>
>
> It's strange when they're suddenly home all the time. I used to think that
> when we got to that point in life where he would be home that we would
> have time to enjoy things togsther, but now he's too weak. Honestly, he
> probably wouldn't want to do those things anyway like picnics, walks, etc.
> He would be dragging me to a gig somewhere...and now I am praying that he
> will be here to drag me...
>

We were going to travel and see some of the places that we've talked about
over the years. Now a 2 hour drive to Raleigh means that we book a motel
for the night. Not only that, but we have some totally different
activities. I love to walk, Rob has always hated it, though he helped me
walk when I was first diagnosed with diabetes. As soon as he thought he
could do so, he gave it up.

We both love to read, but usually different types of material. Rob is
currently reading the 4th Darwin Awards book, and I'm reading a
history/fantasy anthology. I used to drag Rob kicking and screaming to
historical sites and he used to drag me kicking and screaming to every
aviation thing he could. We've reached a sort of accomodation, we would
still drag each other to these things, but now we admit that we enjoyed it
in spite of our initial opposition. While Rob is not too weak, he still
tires enough that I hate to put him through all that.

I'm with you, I love music, but not being there with the stuff booming in my
ears and not necessarily being the type I want to listen to. Besides I like
to read while listening to my Zen MP3 player.

Pam S.

"Tanada" <tanada@earthlink.net> wrote in message
news:sRAUh.745$Ut6.55@newsread1.news.pas.earthlink .net...
>
> "Giuditta" <jmarrs@myspeedworks.com> wrote in message
> news:aBzUh.56$X05.368@eagle.america.net...
>>
>>
>> It's strange when they're suddenly home all the time. I used to think
>> that when we got to that point in life where he would be home that we
>> would have time to enjoy things togsther, but now he's too weak.
>> Honestly, he probably wouldn't want to do those things anyway like
>> picnics, walks, etc. He would be dragging me to a gig somewhere...and now
>> I am praying that he will be here to drag me...
>>
>
> We were going to travel and see some of the places that we've talked about
> over the years. Now a 2 hour drive to Raleigh means that we book a motel
> for the night. Not only that, but we have some totally different
> activities. I love to walk, Rob has always hated it, though he helped me
> walk when I was first diagnosed with diabetes. As soon as he thought he
> could do so, he gave it up.
>
> We both love to read, but usually different types of material. Rob is
> currently reading the 4th Darwin Awards book, and I'm reading a
> history/fantasy anthology. I used to drag Rob kicking and screaming to
> historical sites and he used to drag me kicking and screaming to every
> aviation thing he could. We've reached a sort of accomodation, we would
> still drag each other to these things, but now we admit that we enjoyed it
> in spite of our initial opposition. While Rob is not too weak, he still
> tires enough that I hate to put him through all that.
>
> I'm with you, I love music, but not being there with the stuff booming in
> my ears and not necessarily being the type I want to listen to. Besides I
> like to read while listening to my Zen MP3 player.
>
> Pam S.
If wishes could be horses, huh. You sound like us, doing our own things just
not together, but isn't that real life. Who likes to do everything their
spouses like to do anyway with no identity of their own. I know some like
that but I think it's all an act sometimes. They appear to be bored.

I'm used to doing things alone or with a friend or my kids, but it's still
good to know I have my best friend (hubby)around...it's not so much the
doing things, it's their presence in our lives, don't you think. I dreamed
of doing things like a real vacation to an island, but I think I knew deep
down that it would never happen because he's been everywhere, so that's not
his thing.

I'm glad that I have had interests and know who I am as a person and
actually don't mind doing things alone...even a movie or eating out and
taking a book...is that weird? But then on the other hand, I remember when
we got together and had those picnics and did everything together when he
was home...and I'd ride for hours to some concert just to be with him. Then
I had college, more kids, job and he was on the road more. But we still
managed to stay close like a pair of old comfortable warm socks folded
together.

Have a good night, dear.
Hugs,
G

"Giuditta" <jmarrs@myspeedworks.com> wrote in message
newsUzUh.58$X05.468@eagle.america.net...
>
> <islavision2004@yahoo.com> wrote in message
> news:1176637000.071090.129650@b75g2000hsg.googlegr oups.com...
>> On Apr 14, 6:26 pm, "Giuditta" <jma...@myspeedworks.com> wrote:
>>> You all know that Don has been feeling weaker, coughing more, etc., and
>>> he
>>> went to the doctor who said his lungs sound clear, his blood counts are
>>> within normal ranges except for platelets, and that he doesn't have to
>>> come
>>> back for three weeks except for the weekly blood count check.
>>>
>>>
>>> Weirded Out,
>>> G
>>
>> Hi G,
>>
>> My opinion 'normal' means normal for someone who has had chemo and has
>> extensive cancer.
>> Have you tried high calorie food drinks for Don, they come in nice
>> flavours are easy to digest, and go down easy. I don't know how Don
>> feels but my sensation re food is that I feel both hungry and full at
>> the same time, I can only eat very small portions and try to do this
>> frequently. If someone places a large portion of food in front of me,
>> my ability to eat anything just goes. High protein drinks help me.
>>
>> As far as sitting in front of the TV all the time, one can easily get
>> stuck there - but on the other hand socialising can be really
>> exhausting. Short quite undemanding breaks outside in the fresh air
>> are helpful to lift the sprit, and seeing, smelling, touching, some of
>> Gods creation can bring an inner feeling of peace. It can be hard to
>> just get out the door, putting on outdoor clothes and shoes, preparing
>> for the world, is tiring in itself, however if Don can get it together
>> just for a short time 2 or 3 times a week, without feeling he has to
>> 'switch on the lights' for friends or others, it may boost quietly
>> his feeling of participation in life. I don't mean doing too much,
>> going to gigs and so on, that can come later, as his strength grows,
>> now is the time to slowly try and rebuild a little strength - baby
>> steps -
>>
>> Sitting in front of the TV is a great escape for the mind,
>> unfortunately it saps physical energy.
>> Reading between the lines I guess he is very disappointed that he is
>> still ill, he had so much faith that the chemo would heal him, thats a
>> tough call for him to deal with.
>>
>> Would it help if you sat down and talked together, explain to him that
>> you need to know what the doctor is saying and ask him to give
>> permission for the doctor to talk to you. You need information so you
>> can do everything possible to care for Don, some of his symptoms may
>> be nothing to do with the cancer or the chemo. Your not knowing these
>> things, just makes it harder for you to understand what is going on
>> and to do the best you can for him, and possibly causes you more
>> stress and worry about the unknown than if you had the straight
>> facts.
>>
>> Just my take on things.
>>
>> Take some time for you.
>>
>> Blessings
>> isi
>
>
> Have you been a fly on the wall around here, you got it all right. Do you
> really think it's possible for Don to get strength back? I have thought
> about pressing more about him taking a walk even a few times down the
> hall, but he is perched in his chair with the electric throw on him,
> snuggled in front of the tv.
>
> I haven't been in his situation, so I don't know how he feels. I've always
> been the type to trudge on even when I have been sick, had C-sections,
> other surgery because I've had to. In fact, from being a kid, my mom never
> let us give in to sickness...I remember having our son and Don was on the
> road...I could barely walk, but she made me come to the table for
> dinner...no meals in bed for me...it was maddening, but now I'm glad she
> did it.
>
> But what Don has is more serious than anything I've ever had to deal with,
> so I can't identify with it. I just take him at his word that he's too
> weak to do anything. He's not enjoying this rest at all, and I can feel
> his mood getting tired of being tired.
>
> I have offered him drinks for energy, but he doesn't have much of an
> appetite for anything now. I do put smaller portions on his plate because
> he has suggested himself that I do that since he doesn't eat much.
>
> Mainly, he drinks orange juice and milk, and that's about all we can get
> him drink. He thought he wanted a McDonald's burger today, so my daughter
> got him one with fries, but he said it didn't taste right, and he didn't
> touch the fries. Just recently has he quit eating much.
>
> I told him about taking baby steps to get back strength, but he said he's
> too tired.
>
> He just called me from his end of the place to come watch the Sopranos
> with him, so I'm going...back at you soon...thanks for the feedback.
>
> Giuditta

Oh great! If you caught the Sopranos tonight, Johnny Sac had SCLC ... just
what Don needed to see. But the writers made an error because they said he
was in stage IV SCLC, but it isn't staged. Someone didn't do the research
....and they had him smoking while rolling an oxygen tank ... I thought any
minute he would blow himself to bits.

G

On Apr 16, 4:00 am, "Giuditta" <jma...@myspeedworks.com> wrote:
> <islavision2...@yahoo.com> wrote in message
>
> news:1176637000.071090.129650@b75g2000hsg.googlegr oups.com...
>
>
>
>
>
> > On Apr 14, 6:26 pm, "Giuditta" <jma...@myspeedworks.com> wrote:
> >> You all know that Don has been feeling weaker, coughing more, etc., and
> >> he
> >> went to the doctor who said his lungs sound clear, his blood counts are
> >> within normal ranges except for platelets, and that he doesn't have to
> >> come
> >> back for three weeks except for the weekly blood count check.
>
> >> Weirded Out,
> >> G
>
> > Hi G,
>
> > My opinion 'normal' means normal for someone who has had chemo and has
> > extensive cancer.
> > Have you tried high calorie food drinks for Don, they come in nice
> > flavours are easy to digest, and go down easy. I don't know how Don
> > feels but my sensation re food is that I feel both hungry and full at
> > the same time, I can only eat very small portions and try to do this
> > frequently. If someone places a large portion of food in front of me,
> > my ability to eat anything just goes. High protein drinks help me.
>
> > As far as sitting in front of the TV all the time, one can easily get
> > stuck there - but on the other hand socialising can be really
> > exhausting. Short quite undemanding breaks outside in the fresh air
> > are helpful to lift the sprit, and seeing, smelling, touching, some of
> > Gods creation can bring an inner feeling of peace. It can be hard to
> > just get out the door, putting on outdoor clothes and shoes, preparing
> > for the world, is tiring in itself, however if Don can get it together
> > just for a short time 2 or 3 times a week, without feeling he has to
> > 'switch on the lights' for friends or others, it may boost quietly
> > his feeling of participation in life. I don't mean doing too much,
> > going to gigs and so on, that can come later, as his strength grows,
> > now is the time to slowly try and rebuild a little strength - baby
> > steps -
>
> > Sitting in front of the TV is a great escape for the mind,
> > unfortunately it saps physical energy.
> > Reading between the lines I guess he is very disappointed that he is
> > still ill, he had so much faith that the chemo would heal him, thats a
> > tough call for him to deal with.
>
> > Would it help if you sat down and talked together, explain to him that
> > you need to know what the doctor is saying and ask him to give
> > permission for the doctor to talk to you. You need information so you
> > can do everything possible to care for Don, some of his symptoms may
> > be nothing to do with the cancer or the chemo. Your not knowing these
> > things, just makes it harder for you to understand what is going on
> > and to do the best you can for him, and possibly causes you more
> > stress and worry about the unknown than if you had the straight
> > facts.
>
> > Just my take on things.
>
> > Take some time for you.
>
> > Blessings
> > isi
>
> Have you been a fly on the wall around here, you got it all right. Do you
> really think it's possible for Don to get strength back? I have thought
> about pressing more about him taking a walk even a few times down the hall,
> but he is perched in his chair with the electric throw on him, snuggled in
> front of the tv.
>
> I haven't been in his situation, so I don't know how he feels. I've always
> been the type to trudge on even when I have been sick, had C-sections, other
> surgery because I've had to. In fact, from being a kid, my mom never let us
> give in to sickness...I remember having our son and Don was on the road...I
> could barely walk, but she made me come to the table for dinner...no meals
> in bed for me...it was maddening, but now I'm glad she did it.
>
> But what Don has is more serious than anything I've ever had to deal with,
> so I can't identify with it. I just take him at his word that he's too weak
> to do anything. He's not enjoying this rest at all, and I can feel his mood
> getting tired of being tired.
>
> I have offered him drinks for energy, but he doesn't have much of an
> appetite for anything now. I do put smaller portions on his plate because he
> has suggested himself that I do that since he doesn't eat much.
>
> Mainly, he drinks orange juice and milk, and that's about all we can get him
> drink. He thought he wanted a McDonald's burger today, so my daughter got
> him one with fries, but he said it didn't taste right, and he didn't touch
> the fries. Just recently has he quit eating much.
>
> I told him about taking baby steps to get back strength, but he said he's
> too tired.
>
> He just called me from his end of the place to come watch the Sopranos with
> him, so I'm going...back at you soon...thanks for the feedback.
>
> Giuditta- Hide quoted text -
>

Hi G,

In my experience this cancer related weakness and strength moves up
and down, another roller coaster.

My Mother was a brilliant nurse, whenever I was ill and she tucked me
up in bed with loads of TLC, feeding me and bringing me drinks until I
got better. Now I have to do all that for myself, get food prepare
it, clear up and try to keep the place together (well almost :-) ) so
that forces me into slow activity.

I don't know if Don will ever get his full strength back. I do know
that if he does not move, his muscles will waste away, he will lose
strength and feel more tired than he does now. It will then be harder
for him.
I hope that does not come over as being mean, it's just that from my
experience that's what happens. I do understand it's hard to move
when feeling too tired, the trouble is if one does not move (I did
not) things do get worse. Then one has to start from a lower baseline
and it's even harder to move and more exhausting.

To move, to do anything, to fight the cancer, he has to try and eat.
A little and often. The cancer eats food faster than our bodies can
assimilate it so deprives our bodies of the nourishment we need, so we
get more and more tired, eat even less, and then body starts to eat
itself to feed the cancer. It's great that he is drinking milk, is it
full fat? Thats the best one for people with cancer it has more
energy. You can boost the calorific value of his milk by adding dry
milk powder to it, (blend it well and he may not notice. :-)

Eating is a big problem, when one does not feel hungry.
What I do is set my phone to remind me every 2 hours to eat - I don't
want to eat - but force something down. Not a lot or I will feel too
bloated, for example, a small apple cut up into slices with some
cheese, or a slice of toast with loads of nut butter, a yoghurt. It's
hard, and a case of 'mind over matter' the end result is a little more
energy and my digestive tract keeps working. Occasionally I even
enjoy a small meal now. Meals are easier if moist, have a sauce or
gravy so they can slide down, can't cope with dry foods at all or
fries. This is not about me it's about Don and you, I just am trying
to give you ideas from a cancer patient point of view.

It's really hard to do the things that ought to be done, eat, move,
and some days impossible, but the only way to keep any sort of quality
of life is to push oneself through all the resistance and do it. The
pay back is worth it.
This week I am going to the beach for a look at the sea, this entails
my getting a taxi, sitting in taxi for 3 hours and hopefully a short
slow walk for about ten minutes on the beach, that's what turns me
on. If I had not been doing my little baby step walkies, and forcing
myself to eat and move this would be impossible - a month ago it was
impossible! Going to a gig would bring Don joy, he may be able to do
that, if he takes control, eats a little and walks a little, builds
up some energy.

Sorry if I sound like I am nagging, it's just that doing these things
has improved my quality of life and I want to share that.

I do hope that Don gives his doctor permission to talk about the
cancer with you.

Remember to give yourself 'me time'

all the best
isi

<islavision2004@yahoo.com> wrote in message
news:1176717081.914692.109110@d57g2000hsg.googlegr oups.com...
> On Apr 16, 4:00 am, "Giuditta" <jma...@myspeedworks.com> wrote:
>> <islavision2...@yahoo.com> wrote in message
>>
>> news:1176637000.071090.129650@b75g2000hsg.googlegr oups.com...
>>
>>
>>
>>
>>
>> > On Apr 14, 6:26 pm, "Giuditta" <jma...@myspeedworks.com> wrote:
>> >> You all know that Don has been feeling weaker, coughing more, etc.,
>> >> and
>> >> he
>> >> went to the doctor who said his lungs sound clear, his blood counts
>> >> are
>> >> within normal ranges except for platelets, and that he doesn't have to
>> >> come
>> >> back for three weeks except for the weekly blood count check.
>>
>> >> Weirded Out,
>> >> G
>>
>> > Hi G,
>>
>> > My opinion 'normal' means normal for someone who has had chemo and has
>> > extensive cancer.
>> > Have you tried high calorie food drinks for Don, they come in nice
>> > flavours are easy to digest, and go down easy. I don't know how Don
>> > feels but my sensation re food is that I feel both hungry and full at
>> > the same time, I can only eat very small portions and try to do this
>> > frequently. If someone places a large portion of food in front of me,
>> > my ability to eat anything just goes. High protein drinks help me.
>>
>> > As far as sitting in front of the TV all the time, one can easily get
>> > stuck there - but on the other hand socialising can be really
>> > exhausting. Short quite undemanding breaks outside in the fresh air
>> > are helpful to lift the sprit, and seeing, smelling, touching, some of
>> > Gods creation can bring an inner feeling of peace. It can be hard to
>> > just get out the door, putting on outdoor clothes and shoes, preparing
>> > for the world, is tiring in itself, however if Don can get it together
>> > just for a short time 2 or 3 times a week, without feeling he has to
>> > 'switch on the lights' for friends or others, it may boost quietly
>> > his feeling of participation in life. I don't mean doing too much,
>> > going to gigs and so on, that can come later, as his strength grows,
>> > now is the time to slowly try and rebuild a little strength - baby
>> > steps -
>>
>> > Sitting in front of the TV is a great escape for the mind,
>> > unfortunately it saps physical energy.
>> > Reading between the lines I guess he is very disappointed that he is
>> > still ill, he had so much faith that the chemo would heal him, thats a
>> > tough call for him to deal with.
>>
>> > Would it help if you sat down and talked together, explain to him that
>> > you need to know what the doctor is saying and ask him to give
>> > permission for the doctor to talk to you. You need information so you
>> > can do everything possible to care for Don, some of his symptoms may
>> > be nothing to do with the cancer or the chemo. Your not knowing these
>> > things, just makes it harder for you to understand what is going on
>> > and to do the best you can for him, and possibly causes you more
>> > stress and worry about the unknown than if you had the straight
>> > facts.
>>
>> > Just my take on things.
>>
>> > Take some time for you.
>>
>> > Blessings
>> > isi
>>
>> Have you been a fly on the wall around here, you got it all right. Do you
>> really think it's possible for Don to get strength back? I have thought
>> about pressing more about him taking a walk even a few times down the
>> hall,
>> but he is perched in his chair with the electric throw on him, snuggled
>> in
>> front of the tv.
>>
>> I haven't been in his situation, so I don't know how he feels. I've
>> always
>> been the type to trudge on even when I have been sick, had C-sections,
>> other
>> surgery because I've had to. In fact, from being a kid, my mom never let
>> us
>> give in to sickness...I remember having our son and Don was on the
>> road...I
>> could barely walk, but she made me come to the table for dinner...no
>> meals
>> in bed for me...it was maddening, but now I'm glad she did it.
>>
>> But what Don has is more serious than anything I've ever had to deal
>> with,
>> so I can't identify with it. I just take him at his word that he's too
>> weak
>> to do anything. He's not enjoying this rest at all, and I can feel his
>> mood
>> getting tired of being tired.
>>
>> I have offered him drinks for energy, but he doesn't have much of an
>> appetite for anything now. I do put smaller portions on his plate because
>> he
>> has suggested himself that I do that since he doesn't eat much.
>>
>> Mainly, he drinks orange juice and milk, and that's about all we can get
>> him
>> drink. He thought he wanted a McDonald's burger today, so my daughter got
>> him one with fries, but he said it didn't taste right, and he didn't
>> touch
>> the fries. Just recently has he quit eating much.
>>
>> I told him about taking baby steps to get back strength, but he said he's
>> too tired.
>>
>> He just called me from his end of the place to come watch the Sopranos
>> with
>> him, so I'm going...back at you soon...thanks for the feedback.
>>
>> Giuditta- Hide quoted text -
>>
>
> Hi G,
>
> In my experience this cancer related weakness and strength moves up
> and down, another roller coaster.
>
> My Mother was a brilliant nurse, whenever I was ill and she tucked me
> up in bed with loads of TLC, feeding me and bringing me drinks until I
> got better. Now I have to do all that for myself, get food prepare
> it, clear up and try to keep the place together (well almost :-) ) so
> that forces me into slow activity.
>
> I don't know if Don will ever get his full strength back. I do know
> that if he does not move, his muscles will waste away, he will lose
> strength and feel more tired than he does now. It will then be harder
> for him.
> I hope that does not come over as being mean, it's just that from my
> experience that's what happens. I do understand it's hard to move
> when feeling too tired, the trouble is if one does not move (I did
> not) things do get worse. Then one has to start from a lower baseline
> and it's even harder to move and more exhausting.
>
> To move, to do anything, to fight the cancer, he has to try and eat.
> A little and often. The cancer eats food faster than our bodies can
> assimilate it so deprives our bodies of the nourishment we need, so we
> get more and more tired, eat even less, and then body starts to eat
> itself to feed the cancer. It's great that he is drinking milk, is it
> full fat? Thats the best one for people with cancer it has more
> energy. You can boost the calorific value of his milk by adding dry
> milk powder to it, (blend it well and he may not notice. :-)
>
> Eating is a big problem, when one does not feel hungry.
> What I do is set my phone to remind me every 2 hours to eat - I don't
> want to eat - but force something down. Not a lot or I will feel too
> bloated, for example, a small apple cut up into slices with some
> cheese, or a slice of toast with loads of nut butter, a yoghurt. It's
> hard, and a case of 'mind over matter' the end result is a little more
> energy and my digestive tract keeps working. Occasionally I even
> enjoy a small meal now. Meals are easier if moist, have a sauce or
> gravy so they can slide down, can't cope with dry foods at all or
> fries. This is not about me it's about Don and you, I just am trying
> to give you ideas from a cancer patient point of view.
>
> It's really hard to do the things that ought to be done, eat, move,
> and some days impossible, but the only way to keep any sort of quality
> of life is to push oneself through all the resistance and do it. The
> pay back is worth it.
> This week I am going to the beach for a look at the sea, this entails
> my getting a taxi, sitting in taxi for 3 hours and hopefully a short
> slow walk for about ten minutes on the beach, that's what turns me
> on. If I had not been doing my little baby step walkies, and forcing
> myself to eat and move this would be impossible - a month ago it was
> impossible! Going to a gig would bring Don joy, he may be able to do
> that, if he takes control, eats a little and walks a little, builds
> up some energy.
>
> Sorry if I sound like I am nagging, it's just that doing these things
> has improved my quality of life and I want to share that.
>
> I do hope that Don gives his doctor permission to talk about the
> cancer with you.
>
> Remember to give yourself 'me time'
>
> all the best
> isi
>
>
I agree with you. If you don't use it, you lose it. I called the nurse today
and told her that he is weaker and about how he coughed all night last night
again and threw up a lot, when there wasn't much on his stomach.

She told me that when he comes in Wed. that she'll have a talk with him
about being honest about how he's feeling. She said that he came in Wed.
with our son and that he seemed energetic, his color was good and that his
blood counts were improved, so she determined that he was doing better.

Then she said she was shocked when our daughter called Friday (which I
didn't know about) to tell her how weak Don is, and then me called today
further confused her. She said they can't help him if he's not honest with
them.

I agree. He's up and acting like he feels fine at the dr., but then he comes
home and crashes. She is going to give him some kind of drinks Wed. that
will spark his appetite. He just ate chicken soup and toast and so far has
kept it down. He's never been a big eater, but was eating better than normal
for a while.

I can't make him get out and walk and feel like an ogre if I try to push the
issue. The nurse also said he could be depressed since he's not out and
providing for his family or doing much of anything. He says he's not
depressed.

I feel that if he's going to fight this like he says then it's time to put
the boxing gloves on even if it is baby steps...it won't happen in that
chair.

Thanks for the suggestions.

G

Giuditta schreef:
>
> I can't make him get out and walk and feel like an ogre if I try to push the
> issue. The nurse also said he could be depressed since he's not out and
> providing for his family or doing much of anything. He says he's not
> depressed.
>
Maybe it helps if Don is aware that he can even get thrombosis or a
lung emboly (sp??) if he stays this inactive. He really should get up
and walk around a bit. And he can do that because he manages to go to
the doctor's office and act energetic. He is not energetic I know that,
but if he can get up to go to the doctor, he can get up and walk around
a bit, at least in the house, every hour or so for a minute or two to
start with.

I agree with the nurse , from what I read, Don is weak, he is very ill,
but he's also very very depressed and I think that is taking a high toll
now. Have you tried printing out some of the posts here for him to
read, f.i. the one Isi wrote? Or don't you want him to know you are
discussing the situation in this group? I understand how you must be
feeling, it's very hard, you can't keep on nagging all the time, but if
it was me I would get very angry for starters. He's depriving himself
and you of every joy there is in life + he doesn't want to get help,
that would make me angry, I don't say it would help ;-)))

Al the best Anne

Giuditta wrote :

.... snip ...

"I agree. He's up and acting like he feels fine at the dr., but then he
comes home and crashes. She is going to give him some kind of drinks Wed.
that will spark his appetite. He just ate chicken soup and toast and so far
has kept it down. He's never been a big eater, but was eating better than
normal for a while.

I can't make him get out and walk and feel like an ogre if I try to push the
issue. The nurse also said he could be depressed since he's not out and
providing for his family or doing much of anything. He says he's not
depressed."

Hi Giuditta,

I read your recent posts about Don's condition with concern for both of you.

As someone who's had quite a bit of experience with "depression" personally,
and also as a former psychiatric social worker in medical settings, I'd like
to share a few things with you I believe.

Your observation of how Don "brightens" and reports himself feeling better
and stronger when he goes to the doctor, is, imho, an important one.

First, I think "depression" is a 'bad word' (perhaps like the word 'cancer'
?) in that it covers such a wide spectrum of conditions, states, phenomena.
And 'depression' is used in so many different ways to describe everything
from feeling sadness and grief at some 'failing' in life (which in the long
run may be trivial) to describing the complex grieving an older person feels
at the loss of their spouse. The term is used to describe the 'down' side of
the powerful mood swings of people who are manic-depressive where there is a
bio-chemical (lithium) disorder instrumental in extremely fluctuating
biological-mental states. And we use the word in everyday conversation to
describe even mild feelings of sadness, regret.

Deep "endogenous" clinical depression can literally be a life-threatening
medical condition in which catatonia and withdrawal can be accompanied by
biological distintegration even when a person is in otherwise good physical
health. Even 2500 years ago in India Vedic medicine recognized that some
form of surprise threat to the life of the person (shock treatment) was one
of the only things that could impact this form of depression. Clearly Don is
not in 'this' form of depression.

When someone is sick a long time, is physically weak, is involuntarily
prevented from enjoying the pasttimes, social roles, challenges of work, I
think you have to ask : "how can they not be depressed ?" If someone is
facing a life-threatening illness, being told devastating bad news about
their future : how can they not be depressed ? And how can their caregivers
and familiy members and significant others not be depressed when they see a
loved one hurting, inc