What does it for you?

tootsie1

I've been thinking about something lately. As a cancer patient, what makes you feel most vulnerable? For me, it's any test where I have to stretch my arms over my head. It makes me feel like I'm giving up control of what's going to happen to me. It's a feeling of submission that makes me feel very small and scared.

I'd be interested in your thoughts on this.

*hugs*
Gail

damama24

what does it for me?
I guess that knowing that no matter how hard you fight and how much you do and advocate for yourself, in the end it might not be enough. It's the fear of woulda, coulda, shoulda and knowing that you can't turn back time and make it all better. Deb

maglets

damama24 said:

what does it for me?
I guess that knowing that no matter how hard you fight and how much you do and advocate for yourself, in the end it might not be enough. It's the fear of woulda, coulda, shoulda and knowing that you can't turn back time and make it all better. Deb

mmm interesting
Gail that is such an interesting question. Any medical, dental test at all frightens....not paralyze but I know I am anxious.

I really don't like 8 lane highways anymore....I don't like all the very fast aggressive traffic and I always think..please don't let me die in a car accident after fighting cancer so long and hard.

And I have to agree with you about lying down....not the arms up so much but lying in a medical room waiting for a nurse or doc or tech to come in. It does make me feel small and I want to hold my hands up and cover my face or body in a defensive position....good question

mags

msccolon

catheters
the normal urinary ones really get me going. Just finding out I have to be cathed gets me crying like a baby. Of course, so does any new procedure I have to undergo, so maybe I've just turned into a crybaby!
mary

John23

I miss the prostrate exams.


(Ooops. Can I say that?)

I guess nothing can make me feel more helpless, than being
told that my bills won't be paid by medicare or my insurance.

Take a limb or an organ, but please don't take my bank account.
They take it anyway. They probably sell the organs on Ebay, but
won't cut ya' some slack with their bills..

When my ostomy supplier (Edgepark) called to tell me that they
weren't going to ship any supplies for two months due to Medicare's
requirements, and then finding out from Medicare that Edgepark never
submitted a request to them for payment for supplies.....

Having Edgepark show no sympathy with the fact that an ileostomate
can not do without supplies, and offer no alternative to having
to wait for two months with only a week's supply on hand...

That was a feeling of despair and anxiety that is almost undescribable!

So yes Virginia.... there is indeed a sanity clause.

When they tell you things will get better..... They're usually lying.


It's all downhill from here!

lizzydavis

John23 said:

I miss the prostrate exams.


(Ooops. Can I say that?)

I guess nothing can make me feel more helpless, than being
told that my bills won't be paid by medicare or my insurance.

Take a limb or an organ, but please don't take my bank account.
They take it anyway. They probably sell the organs on Ebay, but
won't cut ya' some slack with their bills..

When my ostomy supplier (Edgepark) called to tell me that they
weren't going to ship any supplies for two months due to Medicare's
requirements, and then finding out from Medicare that Edgepark never
submitted a request to them for payment for supplies.....

Having Edgepark show no sympathy with the fact that an ileostomate
can not do without supplies, and offer no alternative to having
to wait for two months with only a week's supply on hand...

That was a feeling of despair and anxiety that is almost undescribable!

So yes Virginia.... there is indeed a sanity clause.

When they tell you things will get better..... They're usually lying.


It's all downhill from here!

I am going in tomorrow at 8:30 am for a sigmoidoscopy.
I am going in tomorrow at 8:30 am for a sigmoidoscopy by my colorectal surgeon. I dread it. End of story.

lizzy

tootsie1

lizzydavis said:

I am going in tomorrow at 8:30 am for a sigmoidoscopy.
I am going in tomorrow at 8:30 am for a sigmoidoscopy by my colorectal surgeon. I dread it. End of story.

lizzy

Oh, me.
Oh, me. I would be anxious, too. I'm just reading this, so I'm assuming the procedure is done, but I pray it went well.

*hugs*
Gail

Sundanceh

What Makes Me Feel Most Vulnerable?
SURGERY

It's all out of my hands at that point.

After that, we try to put Humpty Dumpty back together again - only I don't have all the King's horses and all the Kings's men.....LOL:)

-Craig

Shayenne

Sundanceh said:

What Makes Me Feel Most Vulnerable?
SURGERY

It's all out of my hands at that point.

After that, we try to put Humpty Dumpty back together again - only I don't have all the King's horses and all the Kings's men.....LOL:)

-Craig

When...
Nurses bathe me, I hate that! If I'm hooked up to cathethars, and can't shower myself..I had my husband do it for me instead of them..

Hugsss!
~Donna

maglets

Shayenne said:

When...
Nurses bathe me, I hate that! If I'm hooked up to cathethars, and can't shower myself..I had my husband do it for me instead of them..

Hugsss!
~Donna

in the same vein
oh and getting catheters out.....when you haven't showered for two weeks....yikes!

lisa42

availability of treatments
Knowing that, due to the size and number of lung nodules, I'm not a surgical or radiation candidate for what's in my lungs & so my getting well or not right now depends upon what treatments are still left for me. I've "used up" all the FDA approved usual treatments & it will be experimental drugs and clinical trials from here out. It's scary that I've done so well (only one surgery and no cancer or chemo complications in almost 3 yrs), but that I could end up expiring one day because there's no more treatments available to me. Yikes!
Scans, of course, are very nerve wracking. You know you've had a lot of scans when you go in for one & the receptionists there all ask you how you are, how are the kids, etc. I've lost count how many I've had! My first onc was very scan-happy. I got scanned every six weeks for the first 6-8 months of treatment. I thought it was good at the time, not knowing any better. My case was bad at first, though, and that's the only way they could know what was going on inside of me, so I guess I won't complain. If I live long enough though, I hate to think of what all that radiation is going to do to me.

Lifeisajourney

lisa42 said:

availability of treatments
Knowing that, due to the size and number of lung nodules, I'm not a surgical or radiation candidate for what's in my lungs & so my getting well or not right now depends upon what treatments are still left for me. I've "used up" all the FDA approved usual treatments & it will be experimental drugs and clinical trials from here out. It's scary that I've done so well (only one surgery and no cancer or chemo complications in almost 3 yrs), but that I could end up expiring one day because there's no more treatments available to me. Yikes!
Scans, of course, are very nerve wracking. You know you've had a lot of scans when you go in for one & the receptionists there all ask you how you are, how are the kids, etc. I've lost count how many I've had! My first onc was very scan-happy. I got scanned every six weeks for the first 6-8 months of treatment. I thought it was good at the time, not knowing any better. My case was bad at first, though, and that's the only way they could know what was going on inside of me, so I guess I won't complain. If I live long enough though, I hate to think of what all that radiation is going to do to me.

Paranoria
Spelled right?? I should be happy happy to be ned, remission, but waiting for other shoe to drop. Have learned to take one day at a time now, and enjoy breathing each day. But paranoia still lurks. I am stage 3 and onc is talking about next scan to be 1 year, because of those effects. But don't know if I can go that long. PARANOIA. I can't believe I have even started liking the taste of the orange barium for c scans. When I start like colonoscopy preps, I'll know I am crazy......I preach to others positive thinking and I go out a buy our burial plots and headstone (which is really being practical).....then my husband has to have a stent for 99% blockage within a week. Kids think we are tempting fate......Pat the Paranoiaaaaaaa, but being practical really.....at least I should be delighted not to be facing those wonderful tests/procedures they give us. Thank goodness they have them..

Nana b

Lifeisajourney said:

Paranoria
Spelled right?? I should be happy happy to be ned, remission, but waiting for other shoe to drop. Have learned to take one day at a time now, and enjoy breathing each day. But paranoia still lurks. I am stage 3 and onc is talking about next scan to be 1 year, because of those effects. But don't know if I can go that long. PARANOIA. I can't believe I have even started liking the taste of the orange barium for c scans. When I start like colonoscopy preps, I'll know I am crazy......I preach to others positive thinking and I go out a buy our burial plots and headstone (which is really being practical).....then my husband has to have a stent for 99% blockage within a week. Kids think we are tempting fate......Pat the Paranoiaaaaaaa, but being practical really.....at least I should be delighted not to be facing those wonderful tests/procedures they give us. Thank goodness they have them..

Scans
Yes waiting for scan results, like I am now.......but during chemo I hated walking with that pole to the bathroom everyone that looked at you, had the look of sympathy on their face, "oh your a patient, not a caregiver."


But getting ready to head out for a scan and the family shows no concern, it's like....okay, this is not okay, some attention would be nice! lol

khl8

Nana b said:

Scans
Yes waiting for scan results, like I am now.......but during chemo I hated walking with that pole to the bathroom everyone that looked at you, had the look of sympathy on their face, "oh your a patient, not a caregiver."


But getting ready to head out for a scan and the family shows no concern, it's like....okay, this is not okay, some attention would be nice! lol

My most vulnerable moment is
My most vulnerable moment is when my colorectal surgeon says he needs to examine me. I start crying immediatly. He has this horrid table that most of you have seen, wehere you bend over and thenthe table raises your butt in the air!!!! I have sucessfully talked him into ettingm e lay on myside and him doing the exam this way. And to all out there, make sure your surgeon does not have HUGE hands!!!!!
Kathy