So, are we unfeeling wretches, or just used to it all?

DrMary

I was telling someone about having my mother-in-law here for Thanksgiving and remembered a Kodak moment:

Doug was steadily improving (after losing over 30 lbs in 3 weeks and having had a life-threatening allergic reaction to PPN in the hospital) but still had a touchy stomach.

He was already sick of Boost Plus and wanted to try some soup - on the first sip, he gagged, subsequently barfing up everything he'd just drunk. The kids and I didn't interrupt the conversation - one handed him a nearby basin (they were scattered all over the house at that point), one got tissues and I got him some water. We looked up to see her shocked face. "Don't worry - he does that all the time."

I realized later that sounded pretty cold - how do you tell someone that you had to stop crying every time he threw up because it was several times an hour? Or that throwing up because of a gag reflex (rather than from chemo nausea) was an improvement?

What nasty side effects have you become used to? Do you get those looks from friends, relatives and neighbors (the one that says, "how can you just stand by and let this happen to him?")?

Noellesmom

nothing yet
But I'm pretty stoic. I believe there are few actual crises that go along with cancer or many other illnesses, barring the ultimate crisis we all work to avoid. You just deal with whatever is in front of you at that moment, except it as part of the disease or its treatment and go forward. At any time, ANYTHING can seem like a crisis if you don't put in perspective.

I'm sure, however, Doug's mother was appalled at what her child experienced trying to just drink soup. Got to be hard for her. Can't even imagine.

Barbara53

it's so biological
Unless you're in it, you can't get the biological realism of advanced cancer. But you know, just being accepted, puke and all, is probably one of the biggest gifts we give day after day. Mom belches all the time, which is kind of funny to me, and we've both gotten used to it, but it's a matter of time before she does it in the wrong place at the wrong time (she's getting fuzzy on the details of what's appropriate).

Her cancer affects just about everything in the abdomen, and as her first-line caregiver, I'm the one that gets to hear ongoing BM reports (breaking news!). Often more than you wanna know...

Pennymac02

Barbara53 said:

it's so biological
Unless you're in it, you can't get the biological realism of advanced cancer. But you know, just being accepted, puke and all, is probably one of the biggest gifts we give day after day. Mom belches all the time, which is kind of funny to me, and we've both gotten used to it, but it's a matter of time before she does it in the wrong place at the wrong time (she's getting fuzzy on the details of what's appropriate).

Her cancer affects just about everything in the abdomen, and as her first-line caregiver, I'm the one that gets to hear ongoing BM reports (breaking news!). Often more than you wanna know...

so biological !
Bodily fluids have certainly become the norm at my house, too. The treatment for Mikes high ammonia level is a super laxitive called lactulose. Poop conversations are frequent and colorful. We also have emergency emesis basins around the house that formally were dollar store waste baskets.

debbieg5

right there with ya
I just signed up on this board a few days ago and just now discovered that there was a caregiver thread(guess I was too wrapped up in the particular cancer threads).

But as soon as I saw the title of your topic, I knew exactly what you were talking about.
there are way too many bodily functions that go into overdrive (and don't they all revolve around some kind of secretion??). The latest in my husband's cancer journey was a laryngectomy. Right after the surgery, any kind of little cough or noise was a matter of great concern. Now, I barely take notice of the coughing. I felt the same way when my family was here at T-giving. You feel the looks they give you when you are not jumping up and running to his side at each choking noise.
Debbie

mswijiknyc

debbieg5 said:

right there with ya
I just signed up on this board a few days ago and just now discovered that there was a caregiver thread(guess I was too wrapped up in the particular cancer threads).

But as soon as I saw the title of your topic, I knew exactly what you were talking about.
there are way too many bodily functions that go into overdrive (and don't they all revolve around some kind of secretion??). The latest in my husband's cancer journey was a laryngectomy. Right after the surgery, any kind of little cough or noise was a matter of great concern. Now, I barely take notice of the coughing. I felt the same way when my family was here at T-giving. You feel the looks they give you when you are not jumping up and running to his side at each choking noise.
Debbie

Debbie - right there with ya
My husband also is a lary now so I know about the coughing. You have to check all sorts of stuff with that, he still has his PEG in so keeping an eye on that, his nose runs so keeping an eye on that, and once a week he gets a 24 hour bug so now I'm watching that secretion too. Oy vey it's a lot!! If you ever need a sympathetic ear look me up. Also if you have a question, talk to Silver Foxette. She is a lary also and I get great advice and questions answered from her.

None of us are unfeeling, but even the horrible things or the weird things become mundane and commonplace after a while.

mswijiknyc

debbieg5 said:

right there with ya
I just signed up on this board a few days ago and just now discovered that there was a caregiver thread(guess I was too wrapped up in the particular cancer threads).

But as soon as I saw the title of your topic, I knew exactly what you were talking about.
there are way too many bodily functions that go into overdrive (and don't they all revolve around some kind of secretion??). The latest in my husband's cancer journey was a laryngectomy. Right after the surgery, any kind of little cough or noise was a matter of great concern. Now, I barely take notice of the coughing. I felt the same way when my family was here at T-giving. You feel the looks they give you when you are not jumping up and running to his side at each choking noise.
Debbie

Debbie - right there with ya
My husband also is a lary now so I know about the coughing. You have to check all sorts of stuff with that, he still has his PEG in so keeping an eye on that, his nose runs so keeping an eye on that, and once a week he gets a 24 hour bug so now I'm watching that secretion too. Oy vey it's a lot!! If you ever need a sympathetic ear look me up. Also if you have a question, talk to Silver Foxette. She is a lary also and I get great advice and questions answered from her.

None of us are unfeeling, but even the horrible things or the weird things become mundane and commonplace after a while.

SamsWife

You're comment caused me to
You're comment caused me to reflect on some of these things. My husband passed last March - he had colon cancer. It is truly amazing how those things do just become commonplace - I would stop and think about it sometimes and it would kind of freak me out how much we learn to deal with without panicking or being grossed out by all that we deal with - it's all just being part of a caregiver and trying to make them feel as comfortable as possible with dignity and respect. Another thing I remembered was this: my husband was having an affair the last year of his life (some of you already know this). I found letters from her after he passed (he was always an extrememly difficult person to be with) where she stated that she wanted to give up her family and job and relocate to our town so that he could leave us to be with her and she could care for him and he could die in her arms. Sounds very romantic right?! Well, last January he had to have emergency surgery (he was already on hospice) because a tumor had blocked his small intestine (he had an ileostomy) and his stomach was ready to explode (for real). He was in so much pain and he puked all over the bedroom. After the ambulance took him to the hospital, I had to make arrangements for the kids and clean up the bedroom before I could go to be with him. I felt two things: one - how sorry I was for him and how I hurt for the suffering he was enduring - very sad, and two - intense anger and wondering where was this little b****! She thinks this is all so glamorous and she wants to rush in and save him! If I had had her phone number I swear I would've called her to come and clean that mess and just show her how much hard work and how unpleasant this all was and that the kids and I WERE THERE for him - for three years we took excellent care of him and hurt for him.

Thanks again for the opportunity to vent! Through it all though the kids and I took very good care of him and we feel very good about that.

God bless and take care,
Tina

I found the letters after he passed but he sent me an e-mail from his blackberry on New Year's Eve last year stating that he wanted to die in the arms of another woman. I didn't hold him back - I just told him if he, as the kid's dying father, wanted to leave them to go be with another woman that he'd better man up and make the choice for himself and he could tell his children why he wanted to move away from them. He wanted me to do all of the dirty work and I refused. Needless to say, he never left! He just wanted to play the game - the loving family that did take excellent care of him and the doting mistress. Good times! Good times!

DrMary

SamsWife said:

You're comment caused me to
You're comment caused me to reflect on some of these things. My husband passed last March - he had colon cancer. It is truly amazing how those things do just become commonplace - I would stop and think about it sometimes and it would kind of freak me out how much we learn to deal with without panicking or being grossed out by all that we deal with - it's all just being part of a caregiver and trying to make them feel as comfortable as possible with dignity and respect. Another thing I remembered was this: my husband was having an affair the last year of his life (some of you already know this). I found letters from her after he passed (he was always an extrememly difficult person to be with) where she stated that she wanted to give up her family and job and relocate to our town so that he could leave us to be with her and she could care for him and he could die in her arms. Sounds very romantic right?! Well, last January he had to have emergency surgery (he was already on hospice) because a tumor had blocked his small intestine (he had an ileostomy) and his stomach was ready to explode (for real). He was in so much pain and he puked all over the bedroom. After the ambulance took him to the hospital, I had to make arrangements for the kids and clean up the bedroom before I could go to be with him. I felt two things: one - how sorry I was for him and how I hurt for the suffering he was enduring - very sad, and two - intense anger and wondering where was this little b****! She thinks this is all so glamorous and she wants to rush in and save him! If I had had her phone number I swear I would've called her to come and clean that mess and just show her how much hard work and how unpleasant this all was and that the kids and I WERE THERE for him - for three years we took excellent care of him and hurt for him.

Thanks again for the opportunity to vent! Through it all though the kids and I took very good care of him and we feel very good about that.

God bless and take care,
Tina

I found the letters after he passed but he sent me an e-mail from his blackberry on New Year's Eve last year stating that he wanted to die in the arms of another woman. I didn't hold him back - I just told him if he, as the kid's dying father, wanted to leave them to go be with another woman that he'd better man up and make the choice for himself and he could tell his children why he wanted to move away from them. He wanted me to do all of the dirty work and I refused. Needless to say, he never left! He just wanted to play the game - the loving family that did take excellent care of him and the doting mistress. Good times! Good times!

I want to go slap her myself
Glad you vented - while it is probably best that you took the high road, I think we all would have understood if you had dumped a few tons of manure on her doorstep, once you found the letters.

I do hope life is better now, both for you and the kids.

ketziah35

iz
We are desensitized to a lot of things.

debbieg5

mswijiknyc said:

Debbie - right there with ya
My husband also is a lary now so I know about the coughing. You have to check all sorts of stuff with that, he still has his PEG in so keeping an eye on that, his nose runs so keeping an eye on that, and once a week he gets a 24 hour bug so now I'm watching that secretion too. Oy vey it's a lot!! If you ever need a sympathetic ear look me up. Also if you have a question, talk to Silver Foxette. She is a lary also and I get great advice and questions answered from her.

None of us are unfeeling, but even the horrible things or the weird things become mundane and commonplace after a while.

lary support
good to find out there's another lary around here. How recently was your husband's surgery?
Ours was Sept 16. The constant nose running is unbelievable. It's those kind of things that no one mentions ahead of time. It looks pretty gross, but a lot of time, my husband just shoves a tissue up in there and lets it hang out.
Unfortunately, he has now developed a fistula just inside the edge of the stoma. He realized a few days after T-giving that he had "sprung a leak". NOw he can't take anything by mouth or he coughs even more.

I'll have to look up silver Foxette.
Thanks,
Debbie

mswijiknyc

Case in point
Once a week, hubby gets violently ill (vomiting everything up, chills, fever, sweats). Please bear in mind he has not had either chemo or rads as of now. And the sick days keep getting longer in duration.

Anyway . . .

Today is hubby's sick day. So I'm rubbing his back while he vomits into the toilet bowl, giving him tissue to wipe his nose and mouth, plunging the toilet so it flushes (don't ask), bringing him water and fluids, tucking him into bed, giving him forehead kisses, telling him to call me if he needs anything . . .

. . . and then coming downstairs to finish my dinner. Icky bodily fluids (vomit, feces, mucus) used to make me so sick to me stomach.

Did I mention that the vomit looks the same color as the gravy? Yummy.

mswijiknyc

debbieg5 said:

lary support
good to find out there's another lary around here. How recently was your husband's surgery?
Ours was Sept 16. The constant nose running is unbelievable. It's those kind of things that no one mentions ahead of time. It looks pretty gross, but a lot of time, my husband just shoves a tissue up in there and lets it hang out.
Unfortunately, he has now developed a fistula just inside the edge of the stoma. He realized a few days after T-giving that he had "sprung a leak". NOw he can't take anything by mouth or he coughs even more.

I'll have to look up silver Foxette.
Thanks,
Debbie

complications (
Oh no! Fistulas SUUUUUUUUCK!! His surgery was October 1 of this year and surgery was first, not after any other treatment. Keep your head up - I'll be thinking of you

Also have you looked up WebWhispers or IAL? They are great resources. You may even be able to find some local larys.

Hugs,
April

Pennymac02

mswijiknyc said:

Case in point
Once a week, hubby gets violently ill (vomiting everything up, chills, fever, sweats). Please bear in mind he has not had either chemo or rads as of now. And the sick days keep getting longer in duration.

Anyway . . .

Today is hubby's sick day. So I'm rubbing his back while he vomits into the toilet bowl, giving him tissue to wipe his nose and mouth, plunging the toilet so it flushes (don't ask), bringing him water and fluids, tucking him into bed, giving him forehead kisses, telling him to call me if he needs anything . . .

. . . and then coming downstairs to finish my dinner. Icky bodily fluids (vomit, feces, mucus) used to make me so sick to me stomach.

Did I mention that the vomit looks the same color as the gravy? Yummy.

How Awful?
How awful am I that this post made me laugh?

I seriously think that my sense of humor, while twisted to begin with, has sunk to an even lower level.

DrMary

mswijiknyc said:

Case in point
Once a week, hubby gets violently ill (vomiting everything up, chills, fever, sweats). Please bear in mind he has not had either chemo or rads as of now. And the sick days keep getting longer in duration.

Anyway . . .

Today is hubby's sick day. So I'm rubbing his back while he vomits into the toilet bowl, giving him tissue to wipe his nose and mouth, plunging the toilet so it flushes (don't ask), bringing him water and fluids, tucking him into bed, giving him forehead kisses, telling him to call me if he needs anything . . .

. . . and then coming downstairs to finish my dinner. Icky bodily fluids (vomit, feces, mucus) used to make me so sick to me stomach.

Did I mention that the vomit looks the same color as the gravy? Yummy.

Vomit Gravy
Yeah - the kids noticed that. And kept eating their gravy. One night, he threw up in his soup bowl and it really didn't look any different from the soup I'd served. They finished their dinner while I cleaned up, but the older one mentioned later that it disturbed her a bit that she was able to do that.

Yes, I gave her the "we need to keep ourselves strong for Daddy" talk. Then I put them all to bed and hit the vodka.

No one knows the "why they were in the bathroom so long and why Mommy needed the rubber gloves" story yet. Suffice it to say that: 1) he has sworn to never get that constipated again, and 2) if he EVER had any doubts that I really, really loved him, they could be put to rest.

I am currently thanking my stars. No bowel impactions for several weeks. Likewise, no vomiting. His nose drips, due to the lack of nose hairs, but that is at least clear. He is not longer having to spit mucus all the time. He did shove his naked butt in my face today to show me some sores, but at least I did not need to dig out poop or insert something.

The toilet is still slow, however. The plunger is close at hand, as always. At least I don't need the vodka so much any more.

I hope it gets better for you - we all have seen the heart of darkness so many times. I know it's good to face our demons, but there are a few that I could have gone without seeing. . .

3Mana

mswijiknyc said:

Case in point
Once a week, hubby gets violently ill (vomiting everything up, chills, fever, sweats). Please bear in mind he has not had either chemo or rads as of now. And the sick days keep getting longer in duration.

Anyway . . .

Today is hubby's sick day. So I'm rubbing his back while he vomits into the toilet bowl, giving him tissue to wipe his nose and mouth, plunging the toilet so it flushes (don't ask), bringing him water and fluids, tucking him into bed, giving him forehead kisses, telling him to call me if he needs anything . . .

. . . and then coming downstairs to finish my dinner. Icky bodily fluids (vomit, feces, mucus) used to make me so sick to me stomach.

Did I mention that the vomit looks the same color as the gravy? Yummy.

Vomit and gravy??? YUK!
You sound like you love your husband alot to be rubbing his back while he vomits! I think that is "for better or worse" in the marriage vows. It's good that you can joke about it.
My husband passed away this past March from lung cancer and I know I would've done the same thing for him. Keep letting him know how much you love him. My hubby died so quick we never got to say goodbye and that makes me sad. He was getting better, the tumors were shrinking and then he had a rare side effect from Avastin & hemmoraged. So it was a traumatic thing for me to go through. These holidays are very hard, but have to try and get through them for my kids and grandkids. Good luck to you!! Carole