Question for you all

We met a young woman while waiting for the Oncologist who was doing
Rob's military evaluation. Every two years or so the army evaluates
those who are disabled to see if they still need disability. It is a
formality more than anything with Rob, but we still have to go through
it.

The young woman had recently been diagnosed with cancer. I won't
state where, because it isn't relevant to this post. She and her
husband were still in the shell shocked stage where they don't know
what to think.

After we got done with our appointment, I went to the family waiting
room and asked her if I could give her a hug. When she said yes I
gave her the biggest gentle hug I could and told her that she can and
will get through this and that she was going to make it. I wish I
could have done more.

Now to my question. What would you as patients and care givers want
your friends, family, acquaintences and so forth to do for you. What
can we do to let you know that we love you and that we want the best
for you. What practical measures can we do?

With Rob it is easy for me. I take him where he wants/needs to go. I
drive for him, play cards and other games with him, I look out for
things that will help him feel as though he were still a part of
things, I tease him, hug him, joke with him, I do my best to help him
feel as though the world hasn't thrown him away, Some days I feel as
though I'm doing a good job and some days I'm not doing enough.
Somedays I wish someone would take care of me.

What can, should, must, we do to help the other patients, family, and
caregivers who are riding in this leaky boat with the rest of us.

Pam S.

"tanadashoes" <tanada@earthlink.net> wrote in message
news:842f3649-c2e0-4fe5-a311-8058f41b189e@q77g2000hsh.googlegroups.com...
> We met a young woman while waiting for the Oncologist who was doing
> Rob's military evaluation. Every two years or so the army evaluates
> those who are disabled to see if they still need disability. It is a
> formality more than anything with Rob, but we still have to go through
> it.
>
> The young woman had recently been diagnosed with cancer. I won't
> state where, because it isn't relevant to this post. She and her
> husband were still in the shell shocked stage where they don't know
> what to think.
>
> After we got done with our appointment, I went to the family waiting
> room and asked her if I could give her a hug. When she said yes I
> gave her the biggest gentle hug I could and told her that she can and
> will get through this and that she was going to make it. I wish I
> could have done more.
>
> Now to my question. What would you as patients and care givers want
> your friends, family, acquaintences and so forth to do for you. What
> can we do to let you know that we love you and that we want the best
> for you. What practical measures can we do?
>
> With Rob it is easy for me. I take him where he wants/needs to go. I
> drive for him, play cards and other games with him, I look out for
> things that will help him feel as though he were still a part of
> things, I tease him, hug him, joke with him, I do my best to help him
> feel as though the world hasn't thrown him away, Some days I feel as
> though I'm doing a good job and some days I'm not doing enough.
> Somedays I wish someone would take care of me.
>
> What can, should, must, we do to help the other patients, family, and
> caregivers who are riding in this leaky boat with the rest of us.
>
> Pam S.

I don't think there's a specific answer to that one Pam, I think that people
deal with cancer in differing ways and therefore have differing needs to
help them through. I think you are an absolute angel with your caring for
Rob and honey you are doing everything that you can. I understand your wish
for someone to take care of you, I read between the lines of this and read
it as I wish Rob was the man he was before and then the partnership would be
equal instead of your shoulders carrying full responsibility, it's a heavy
load. Or I might just be speaking from my own experience.

I think carers need a big hug, it means far more than words can say. I
remember giving complete strangers a hug in the hospice, it was comforting
for all and almost like a bonding of those in the same club.

Warm Hugs

Alayne

On Feb 14, 4:34*am, "Alayne" <totallyf...@email.com> wrote:
> "tanadashoes" <tan...@earthlink.net> wrote in message
>
> news:842f3649-c2e0-4fe5-a311-8058f41b189e@q77g2000hsh.googlegroups.com...
>
>
>
>
>
> > We met a young woman while waiting for the Oncologist who was doing
> > Rob's military evaluation. *Every two years or so the army evaluates
> > those who are disabled to see if they still need disability. *It is a
> > formality more than anything with Rob, but we still have to go through
> > it.
>
> > The young woman had recently been diagnosed with cancer. *I won't
> > state where, because it isn't relevant to this post. *She and her
> > husband were still in the shell shocked stage where they don't know
> > what to think.
>
> > After we got done with our appointment, I went to the family waiting
> > room and asked her if I could give her a hug. *When she said yes I
> > gave her the biggest gentle hug I could and told her that she can and
> > will get through this and that she was going to make it. *I wish I
> > could have done more.
>
> > Now to my question. *What would you as patients and care givers want
> > your friends, family, acquaintences and so forth to do for you. *What
> > can we do to let you know that we love you and that we want the best
> > for you. *What practical measures can we do?
>
> > With Rob it is easy for me. *I take him where he wants/needs to go. *I
> > drive for him, play cards and other games with him, I look out for
> > things that will help him feel as though he were still a part of
> > things, I tease him, hug him, joke with him, I do my best to help him
> > feel as though the world hasn't thrown him away, *Some days I feel as
> > though I'm doing a good job and some days I'm not doing enough.
> > Somedays I wish someone would take care of me.
>
> > What can, should, must, we do to help the other patients, family, and
> > caregivers who are riding in this leaky boat with the rest of us.
>
> > Pam S.
>
> I don't think there's a specific answer to that one Pam, I think that people
> deal with cancer in differing ways and therefore have differing needs to
> help them through. *I think you are an absolute angel with your caring for
> Rob and honey you are doing everything that you can. *I understand your wish
> for someone to take care of you, I read between the lines of this and read
> it as I wish Rob was the man he was before and then the partnership would be
> equal instead of your shoulders carrying full responsibility, it's a heavy
> load. *Or I might just be speaking from my own experience.
carers need a big hug, it means far more than words can say. *I
> remember giving complete strangers a hug in the hospice, it was comforting
> for all and almost like a bonding of those in the same club.
>
> Warm Hugs
>
> Alayne- Hide quoted text -
>
> - Show quoted text -


Hi T,

This was one of my first questions when my mom was diagnosed with
stage 3 lung cancer. How would I know when she wanted my company and
when is it time for her to rest or for me to encourage her. I was so
afraid of not doing the right thing or not enough. The bad thing with
me is I was so sad that this has happen to my mom, I was crying all
the time and afraid to let her see me, I knew that was not the right
thing and I had to be strong to walk with her through this journey.

I had to reach out to others for a sanity check.Here on this group I
got great advice and have since been better. It is so hard as
everything changes, your conversation, whats important and even the
things you do together.I think the greatest thing we can do is to keep
showing our love just as we always have and walk WITH them through
this journey as they would for us.

I think it is easier when a stranger or someone we are not close to,
not because we don't care, but it is so hard when it is someone we
love and may loose and not see again in this lifetime.

You will be in my thoughts and prayers, take care,

Irishgirl

On Feb 14, 4:34*am, "Alayne" <totallyf...@email.com> wrote:>
>
> I don't think there's a specific answer to that one Pam, I think that people
> deal with cancer in differing ways and therefore have differing needs to
> help them through. *I think you are an absolute angel with your caring for
> Rob and honey you are doing everything that you can. *I understand your wish
> for someone to take care of you, I read between the lines of this and read
> it as I wish Rob was the man he was before and then the partnership would be
> equal instead of your shoulders carrying full responsibility, it's a heavy
> load. *Or I might just be speaking from my own experience.
>
> I think carers need a big hug, it means far more than words can say. *I
> remember giving complete strangers a hug in the hospice, it was comforting
> for all and almost like a bonding of those in the same club.
>
> Warm Hugs
>
> Alayne- Hide quoted text -
>
> - Show quoted text -

I think you're right on your assessment of my mental state. I want my
hubby back. Tuesday we went to get our taxes done and Rob found a
copy of Army magazine to while away the time. It was the aviation
issue. For a while there it was like Rob was himself again, then the
bittersweet hit and I knew that he would never be able to be the
person he was and that hurt a lot. For both of us I think.

Pam S.

On Feb 13, 3:48 pm, tanadashoes <tan...@earthlink.net> wrote:
> We met a young woman while waiting for the Oncologist who was doing
> Rob's military evaluation. Every two years or so the army evaluates
> those who are disabled to see if they still need disability. It is a
> formality more than anything with Rob, but we still have to go through
> it.
>
> The young woman had recently been diagnosed with cancer. I won't
> state where, because it isn't relevant to this post. She and her
> husband were still in the shell shocked stage where they don't know
> what to think.
>
> After we got done with our appointment, I went to the family waiting
> room and asked her if I could give her a hug. When she said yes I
> gave her the biggest gentle hug I could and told her that she can and
> will get through this and that she was going to make it. I wish I
> could have done more.
>
> Now to my question. What would you as patients and care givers want
> your friends, family, acquaintences and so forth to do for you. What
> can we do to let you know that we love you and that we want the best
> for you. What practical measures can we do?
>
> With Rob it is easy for me. I take him where he wants/needs to go. I
> drive for him, play cards and other games with him, I look out for
> things that will help him feel as though he were still a part of
> things, I tease him, hug him, joke with him, I do my best to help him
> feel as though the world hasn't thrown him away, Some days I feel as
> though I'm doing a good job and some days I'm not doing enough.
> Somedays I wish someone would take care of me.
>
> What can, should, must, we do to help the other patients, family, and
> caregivers who are riding in this leaky boat with the rest of us.
>
> Pam S.

This is such a compassionate question, that speaks so loudly for who
you are! This was what I wanted to know for myself as a cancer
patient. Which is why I have started a coaching business for people
who are facing, living with or are in recovery from cancer. It is
also my vision to have a non-profit organization to help those in
financial need who can't afford to hire a coach. I also have open
coaching forums for patients to call in and be coached.
Bonnie

I think it is easier when a stranger or someone we are not close to,
not because we don't care, but it is so hard when it is someone we
love and may loose and not see again in this lifetime.

You will be in my thoughts and prayers, take care,

Irishgirl

Does you Mom have two cancers, breast and lung cancer ? Or does she have
breast cancer that spread to the lungs? They are two different diseases.

"tanadashoes" <tanada@earthlink.net> wrote in message
news:5d4b537a-11fc-42e3-bc08-4bcec416837d@70g2000hsv.googlegroups.com...
On Feb 14, 4:34 am, "Alayne" <totallyf...@email.com> wrote:>
>
> I don't think there's a specific answer to that one Pam, I think that
> people
> deal with cancer in differing ways and therefore have differing needs to
> help them through. I think you are an absolute angel with your caring for
> Rob and honey you are doing everything that you can. I understand your
> wish
> for someone to take care of you, I read between the lines of this and read
> it as I wish Rob was the man he was before and then the partnership would
> be
> equal instead of your shoulders carrying full responsibility, it's a heavy
> load. Or I might just be speaking from my own experience.
>
> I think carers need a big hug, it means far more than words can say. I
> remember giving complete strangers a hug in the hospice, it was comforting
> for all and almost like a bonding of those in the same club.
>
> Warm Hugs
>
> Alayne- Hide quoted text -
>
> - Show quoted text -

I think you're right on your assessment of my mental state. I want my
hubby back. Tuesday we went to get our taxes done and Rob found a
copy of Army magazine to while away the time. It was the aviation
issue. For a while there it was like Rob was himself again, then the
bittersweet hit and I knew that he would never be able to be the
person he was and that hurt a lot. For both of us I think.

Pam S.

Oh Pam, my heart feels for you it truly does, when I read your posts I
almost feel myself writing them. I wish that there was some answer but the
only one is that cancer never existed in the first place.

I wonder if you need a break honey, a bit of "me" time, a time to yourself
to rest relax and be pampered, a couple of days away some where. You
wouldn't completely switch off from the situation but you wouldn't be quite
so front line either. Or perhaps you need a damn good cry. Watching a
loved one and living with cancer to me is like the grieving process but
tears are the last thing that we want to show because we always want to
appear strong, the trouble is if we don't let them out they bubble away
inside.

Warm Hugs Pam

Alayne

On Feb 14, 7:12*pm, "xela56" <noacco...@nw.nl> wrote:
> *I think it is easier when a stranger or someone we are not close to,
> not because we don't care, but it is so hard when it is someone we
> love and may loose and not see again in this lifetime.
>
> You will be in my thoughts and prayers, take care,
>
> Irishgirl
>
> Does you Mom have two cancers, breast and lung cancer ? Or does she have
> breast cancer that spread to the lungs? They are two different diseases.

Mom was diagnosed with breast cancer last summer and they removed the
tumor on her breast, then it spread to her lungs. Her doctor said it
was non-small cell
> lung cancer . They are asking her to consider a new trial medication called Stimuvax (L-BLP 25). We are just learning about this through research on the web and a appointment with the Oncologist next week. How are they different ? Are you familiar with Stimuvax (L-BLP 25) ?

Irishgirl wrote:

> On Feb 14, 7:12 pm, "xela56" <noacco...@nw.nl> wrote:
> > I think it is easier when a stranger or someone we are not close to,
> > not because we don't care, but it is so hard when it is someone we
> > love and may loose and not see again in this lifetime.
> >
> > Does you Mom have two cancers, breast and lung cancer ? Or does she have
> > breast cancer that spread to the lungs? They are two different diseases.
>
> Mom was diagnosed with breast cancer last summer and they removed the
> tumor on her breast, then it spread to her lungs. Her doctor said it
> was non-small cell lung cancer .

Well, then it's metastatic breast cancer, not lung cancer and probably Adenocarcinoma of the breast (which is the most common of NSCLC)

>
> They are asking her to consider a new trial medication called Stimuvax (L-BLP 25). We are just learning about this through research on the web and a appointment with the Oncologist next week. How are they different ? Are you familiar with Stimuvax (L-BLP 25) ?

Most places I look say the following about the treatment.
http://www.bioportfolio.com/february...ine_Phase.html
"MUC1 is over expressed on many cancers such as lungcancer, breast cancer and colorectal cancer. "

I don't know why they're adding that in, if she got a good response from the first 2 treatments of just chemo.
Up to you and your mother to ask the questions.
If you're not happy and/or would rather, get a 2nd opinion at a different treatment center.
J