wrong decision? =(
was very happy to hear to GI doc who did the procedure say that i was a very smart daughter and he agreed.
rad/onc doc then told us several hours after installation that they are only radiating one side and she'll prob never use it. ( i guess we'll see)
needless to say mom is in a lot of pain =( cramping after she tried to eat a bagel. she looked at me with those puppy dog eyes .. i felt like she was saying " you did this to me. " after lymph node removal and tonsillectomy she never asked for pain meds.. now she wants pain meds.
my heart is breaking
Comments
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Better now than later
First of all, no one can predict how well someone will eat with a sore throat - even one side can be bad enough to slow you down. The radiologists do prefer to keep swallowing going, but your guy should know that he can't promise she'll be able to continue eating.
Second of all, since your mother is so slight, she might need to slowly feed at night just to keep up with the damage even one-sided radiation will do - she probably doesn't normally eat a lot or fast, so this really could be necessary.
Lastly, even though I was quite "anti-tube" in my husband's case, if I had known how badly the chemo would hit him, I might have gone with the tube earlier to pump calories in while we could, so that the weeks of throwing up would have taken less of a toll. Once he'd lost 30 lbs or so and was still throwing up, a tube really wouldn't have helped (and probably would have hurt, as he would have had to do the cramping and adjusting just as he was starting to be able to keep food down again).
From what I've read on this list, the discomfort should not last long - if the cramping keeps up, the tube might need to be adjusted. I suspect that you will be very glad in a few weeks - it's just tough to get through this week.
If she is finally asking for pain meds, great! She will need them later anyway, so it's not your fault. It's better to find out now what works best for her.
If you haven't already, go on to the caregivers discussion board - you will meet some amazing folks who can help you with some of the emotions you are feeling right now, as well as giving practical advice.0 -
My radiation oncologist said the same thing...
He, however, turned out to be completely wrong. In my case, I really needed the tube. I was completely dependent upon it for the final four weeks of my treatment and for a couple of weeks after.
I concur with the other statements here about the chemo also being an issue. I used a feeding pump with my tube, and when the chemo made me nauseous, I was able to slow the rate of the pump to almost a drip, and take in three or four cans of nutrition overnight without becoming ill. Sometimes it can be a lifesaver. Some folks here have it installed and yet never use it. In no case was it a mistake to have it installed.
Stop over analyzing, and stop beating yourself up. It's tough enough to survive this as a caregiver, without causing yourself unnecessary pain.
Deb0 -
Need Sweetblood to chime in here
I'm sorry your mom is hurting, bpell, but I still think you did the right thing. Absolutely.
Can't tell when she had the procedure so don't even know if the cramping is related but relax and breathe and know you are doing the very best for your mom.0 -
I've only had my PEG for a
I've only had my PEG for a couple of weeks so the cramping phase is still very fresh for me but only lasted for the first few days (maybe 3 or 4). After that, the cramping subsided and by the end of the first week, it wasn't too uncomfortable either. I found that eating more solid food caused more cramping. Soups, yogurt, etc did not seem to cause much if any cramping. I also found that sleeping with a pillow between my legs seemed to take some of the "strain" off those muscles while I was sleeping which lowered the pain/aching a great deal. Unfortunately pain meds (of any kind) make me extremely nauseaus so I didn't take any at all but would say that if she needs them, it's definitely a better option than being in pain!!
Just as a side note, neither my chemo or rad oncologist were pro-PEG. I basically had to tell them that I WAS getting it and they need to send the referral. I'm 5'10 and weighed 140 pounds... I don't have much to lose either! In the process of the PEG/Mediport placement, collapsed lung, and my first week of chemo/rads I have already lost 13 pounds. Amazingly, they are all now suggesting that I start supplementing with tube feedings at night. Sometimes you never know how things are going to happen, but I certainly believe it is better to be prepared for the worst and be happily surprised than to find out you were unprepared!!
Hoping that this is a temporary bump and she's up and running soon!0 -
THANK YOU ALL!Jamie_Ann said:I've only had my PEG for a
I've only had my PEG for a couple of weeks so the cramping phase is still very fresh for me but only lasted for the first few days (maybe 3 or 4). After that, the cramping subsided and by the end of the first week, it wasn't too uncomfortable either. I found that eating more solid food caused more cramping. Soups, yogurt, etc did not seem to cause much if any cramping. I also found that sleeping with a pillow between my legs seemed to take some of the "strain" off those muscles while I was sleeping which lowered the pain/aching a great deal. Unfortunately pain meds (of any kind) make me extremely nauseaus so I didn't take any at all but would say that if she needs them, it's definitely a better option than being in pain!!
Just as a side note, neither my chemo or rad oncologist were pro-PEG. I basically had to tell them that I WAS getting it and they need to send the referral. I'm 5'10 and weighed 140 pounds... I don't have much to lose either! In the process of the PEG/Mediport placement, collapsed lung, and my first week of chemo/rads I have already lost 13 pounds. Amazingly, they are all now suggesting that I start supplementing with tube feedings at night. Sometimes you never know how things are going to happen, but I certainly believe it is better to be prepared for the worst and be happily surprised than to find out you were unprepared!!
Hoping that this is a temporary bump and she's up and running soon!
within 20 minutes i go from being scared and feeling alone to feeling comforted! i was almost about to break ... thank god for this place, thank god for the internet to allow for such immediate feedback!
your kinds words always put me at ease. your stength is remarkable.
i will have her try some soup in yogurt in the morning, thank you jamie. Mom too gets very nauseous with meds and will only take tylenol
She is trying to sleep now.
she did have the peg placed this morning. has had two rad treatments so far... 28 to go!
I love you all0 -
Slow Breathsbpell0402 said:THANK YOU ALL!
within 20 minutes i go from being scared and feeling alone to feeling comforted! i was almost about to break ... thank god for this place, thank god for the internet to allow for such immediate feedback!
your kinds words always put me at ease. your stength is remarkable.
i will have her try some soup in yogurt in the morning, thank you jamie. Mom too gets very nauseous with meds and will only take tylenol She is trying to sleep now.
she did have the peg placed this morning. has had two rad treatments so far... 28 to go!
I love you all
I was unhappily surprised at the level of discomfort after my PEG installation, too. It took longer than I expected,but the discomfort did subside. WOW - no pain meds after tonsillectomy? I've always been a big girl when it comes to pain, but I couldn't imagine no pain meds - nurse told me to take some as soon as I got home, and stay on schedule, and skip no doses - I followed her orders to the letter.
I hope your mom doesn't need to use the PEG tube, but I'm glad it's in up front - I'd much rather have it and not need it than not have it, and wish I did. My nutritionist told me that 95% of folks getting the treatment I got need to use the PEG (this was part of the "just shut up and get the PEG" talks I had with my team - I knew I'd get the PEG - I just ended up getting it a couple of months before we'd planned at first. Hope your mom gets used to the tube soon. It took me a while - I really resented it at first.0 -
Chiming in...bpell0402 said:THANK YOU ALL!
within 20 minutes i go from being scared and feeling alone to feeling comforted! i was almost about to break ... thank god for this place, thank god for the internet to allow for such immediate feedback!
your kinds words always put me at ease. your stength is remarkable.
i will have her try some soup in yogurt in the morning, thank you jamie. Mom too gets very nauseous with meds and will only take tylenol She is trying to sleep now.
she did have the peg placed this morning. has had two rad treatments so far... 28 to go!
I love you all
I think that you made the right decision and I would like to whack the dr who said that, and second guessed you, right upside his head. how can he say that she probably won't use it? Let me make this perfectly clear. Even if your mother never puts a drop of food thru that tube, and swallows the entire time, you made the right decision based on the facts you had. With your mom's weight, and I believe it was you who said that she wasn't the best eater to begin with? (Could be wrong, I have a lot of people to try and keep track of in my little pea brain.)
The cramping should probably go away in a few days. Mine hurt like an SOB for a while. I also remember that it hurt when I got hungry. I tried not to let my belly get empty and growly cause it was then that I would get spasms and that hurt. It about killed me getting out of the car when I got home on that first day. Man it hurt. About brought me to my knees. Gah! Also that damn bumper was too tight at first.0 -
My gastro doc deliberately set my bumper really tight at the start, to facilitate healing of the incision. I was told to come back in three days and he'd loosen it up. It's supposed to spin freely, and mine was clamped so tight that I couldn't spin it. It did cramp, as I recall. After it was loosened, it was a lot more comfortable.sweetblood22 said:Chiming in...
I think that you made the right decision and I would like to whack the dr who said that, and second guessed you, right upside his head. how can he say that she probably won't use it? Let me make this perfectly clear. Even if your mother never puts a drop of food thru that tube, and swallows the entire time, you made the right decision based on the facts you had. With your mom's weight, and I believe it was you who said that she wasn't the best eater to begin with? (Could be wrong, I have a lot of people to try and keep track of in my little pea brain.)
The cramping should probably go away in a few days. Mine hurt like an SOB for a while. I also remember that it hurt when I got hungry. I tried not to let my belly get empty and growly cause it was then that I would get spasms and that hurt. It about killed me getting out of the car when I got home on that first day. Man it hurt. About brought me to my knees. Gah! Also that damn bumper was too tight at first.
Deb0 -
PEG & 107#
Here's the short and sweet version, in my opinion..
At 107#, you definitely made the right decision. This soon into it you or your mother just don't realize it.
As for pain meds, take them if needed. No use induring pain when you need to be concentrating on making it thru threatment and healing.
Thoughts & Prayers,
John0 -
Hi bpell
No wrong decision here, my daughter was a lot like you when I was going through treatment. All she could do was to be there for me, and that was what I needed the most. Hold her, Hugger her, and Kiss her, and just be there when she needs you.
All the best
Hondo0 -
Do not second guess...Hondo said:Hi bpell
No wrong decision here, my daughter was a lot like you when I was going through treatment. All she could do was to be there for me, and that was what I needed the most. Hold her, Hugger her, and Kiss her, and just be there when she needs you.
All the best
Hondo
As I type this, my husband is taking his first tube feeding. He still is eating (with no taste) but he is losing weight and hydration. Thank God the PEG was put in right off the bat. He was given no choice - and he did have discomfort with it at the beginning. By the way, my husband - who started out alot more than 107 pounds - is only getting radiated on one side as well. He finally told me (the proud man that he is) that it was time to start the feedings and just this morning was scolded a bit from the nurse to really increase his calorie intake. Thank God you are your mother's advocate. You are doing well for her. Hang in there!0 -
Increased calorie consumption.KareGiver said:Do not second guess...
As I type this, my husband is taking his first tube feeding. He still is eating (with no taste) but he is losing weight and hydration. Thank God the PEG was put in right off the bat. He was given no choice - and he did have discomfort with it at the beginning. By the way, my husband - who started out alot more than 107 pounds - is only getting radiated on one side as well. He finally told me (the proud man that he is) that it was time to start the feedings and just this morning was scolded a bit from the nurse to really increase his calorie intake. Thank God you are your mother's advocate. You are doing well for her. Hang in there!
I was going to talk about that in my above post and because I was too fired up wanting to whack the dr, I forgot. Radiation and Chemo are so taxing to your body that patients may require a large increase in calorie intake just to maintain the weight that they already are. I was getting in 24oo calories a day and I was 87 lbs for an entire year! Through rads I was doing 2000-2400 calories a day and I maintained my weight. My normal daily cals is about 1600 a day for me, so that's a lot of extra calories to try and consume.
It's about impossible for me to eat all those calories by mouth when I can swallow. Very difficult. The tube can accomplish this need for extra cals while you sleep, even. Easy peasy.0 -
thank you allsweetblood22 said:Increased calorie consumption.
I was going to talk about that in my above post and because I was too fired up wanting to whack the dr, I forgot. Radiation and Chemo are so taxing to your body that patients may require a large increase in calorie intake just to maintain the weight that they already are. I was getting in 24oo calories a day and I was 87 lbs for an entire year! Through rads I was doing 2000-2400 calories a day and I maintained my weight. My normal daily cals is about 1600 a day for me, so that's a lot of extra calories to try and consume.
It's about impossible for me to eat all those calories by mouth when I can swallow. Very difficult. The tube can accomplish this need for extra cals while you sleep, even. Easy peasy.
for your input and support.
so glad to have a place to vent.
We were in the hospital alllll day yesterday. Her pain kept getting worse so i took her in and they did a CT SCAN. CT scan was all clear ( thank god)! I am just really still so surprised she has so much abdomnal pain.
crossing my fingers it subsides in the next couple of days0 -
Feeling your pain...bpell0402 said:thank you all
for your input and support.
so glad to have a place to vent.
We were in the hospital alllll day yesterday. Her pain kept getting worse so i took her in and they did a CT SCAN. CT scan was all clear ( thank god)! I am just really still so surprised she has so much abdomnal pain.
crossing my fingers it subsides in the next couple of days
I posted a comment in early April - "peg pain" - about my husband. We ended up in the ER a week after it was put in! They determined all was clear for him as well, as far as the cancer, but from the day the PEG was put in, he has had pain in his right thigh (sciatic nerve--did I spell that right?). Truly, that has been his biggest complaint since receiving the cancer diagnosis. SAYING THAT, now that he is using the PEG, as mentioned earlier, we are so glad it is there. Hang in there!0
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