Help

Your wife does need hydration and nutrition.  If she has a PEG, by all means use it for both but she also needs to work on chewing and swallowing to keep muscles and joints working properly for the wonderful day when she can and will eat and drink again.

Recruit the nurses/doctors to help you with this and don't fail to take advantage of the help home health services can bring.  Probably a bit early for swallow therapy but remember, when the time is right, it does exist.

Your wife definitely needs to use her PEG tube.  She needs the water to stay hydrated and help push the chemo out of her body.  She also needs the nutrition to fight this beast.  If she doesn't she is going to end up in the hospital on IV's.  She definitely needs to understand this.  Head and neck radiation, as we were told when my husband started his treatment, is the worse when it comes to radiation.  Get the radiation doctor to talk to her and her oncologist and the nurses.  And she also needs to swallow to keep her muscles working to swallow.  At this point in her treatment, and I hate to say it, it will only get worse. 

Try to talk to her honestly and maybe other members of the family can too.  See if she will read the messages on this forum.  Hydration, nutrition and even pain medication is needed to get thru treatment for this beast.  I am sure she is down right now and it is very understandable but she has to help herself to get thru this.

Wishing the best -- Sharon

and LOTS of hydration....in the past a good meal was something to look forward to.....these days, it is her job.  She's not working for a pay check, she's working for her life.  Eating for pleasure is passe, eating now is an occupation, be it via her mouth or her tube.  She absolutely needs to take in as much water as she can....if she can still swallow, then that's the way to do it.....gotta keep those swallow muscles working for future use.  This is TEMPORARY.....she will finish treatments, and start to get better just like the rest of us. 

Sometimes our caregivers had to take a hard stance, even when their hearts were breaking that we felt like crap, and we were in pain....if she doesn't want to take in nutrition and hydration, let her know you're going to tell the Dr., and don't back out.  Let the Dr. tell her what the consequences are for holding out.  "It doesn't have any taste"....and "I'm not hungry" don't cut it during treatment.  It took me 11 to 14 swallows to get down a can of Ensure Plus....I didn't have to have another for 4 hours.....it took 15 minutes tops, to pour it down the tube....just saying it doesn't take much to get what you need in. 

If she's having other problems, like nausea....the Dr. needs to know that, too.  There are MANY drugs out there other than what she might be taking.  If she has mouth sores (or her mouth and throat are super tender), there are meds to handle that also....Her Dr.'s need to be kept in the loop in order to make this treatment as comfortable as they can.  It's no walk in the park, as I'm sure you've noticed while reading posts....but so far most everybody has made it to the end of the tunnel and come out into the light. 

p

PS....glad you finally posted....it's nice meeting those who come out of the lurking tent....LOL

fishmanpa said:

Magic isn't real

Hi Inspector,

I wish there were magic words to suddenly make your wife want to eat. There aren't any. Telling her she needs to eat won't change anything and just irritate her. I know because I was there.  She's at a point in treatment where the pain and side effects are peaking and she'll feel this way or worse for the next 6-8 weeks. 

She has a PEG so now is the time to use it. A bag of water on slow drip will do wonders to make her feel better. If you have liquid nutrition, that along with some extra water will help. I was unable to eat from about the 4th week on. I lost too much weight and had a PEG put in the same day I rung the bell. I can tell you I felt much better getting some food and hydration into me. However, it's vital that she continue to sip water to keep her swallow working. A call to her team to light a fire under her butt can't hurt either.

Positive thoughts and prayers.

"T"

I so totally agree with T

IV fluids is a must at this stage, all you have to do is ask for them and they will give at any time. i suggest the 2nd, 3rd and 4th days after chemo each time. 

sipping helps with the swallowing long term, she does not want to loose that automatic swallow by not doing so for several weeks. 

i did not have the peg tube back when i did mine treatments as it was not an option. i can say i wish i had. 

john 

Unfortunately, the only magic wors are these.... Harsh and simply put... "If you don't eat and drink..., you die".

Taking in calories and hydration at the point she is in isn't for taste, enjoyment, t anything like that.

It's purely for recovery and survival....

Like others have mentioned, if she has the PEG she has got to use it, and she needs to exercise her swallowing muscles occasionally as well. It would totally suck to go through this ordeal, and come out the other end cured of cancer, but not be able to swallow....

You need to help her resolve this issue as best you can as soon as possible... Involving her, you and her medical team, or be what means neccessary to make her realize that it's a matter of living or dying...

Best

John

I completely understand from your point of view as I'm going through the same thing with my dad.  I ask if he can't taste anything, why not just chock down this nasty ensure crap anyhow that doesn't taste good even with tastebuds?  But... he insists he can't.  He has tried, but just can't.  I'm sure it has to be very difficult to love food and not be able to enjoy it at all.  It's something we can only imagine.  The only thing keeping him drinking fluids is knowing that he doesn't want his organs to shut down.  It is crucial for your wife to sip fluids and be monitored by docs.  My dad was using sweet tea, until the docs said nothing caffeinated (I guess it can dehydrate).  He tried unsweet tea, but cannot drink it. Now he sips water, but still complains that it doesn't taste good at all.  He may be getting a PEG tube and he will use it.  We should find out something today Hopefully your wife's doctors can stress the importance of hydration and nutrtition.  She needs to know she has to do this to survive.  Things aren't going to taste the same for awhile she has to push through it! Wishing you luck and praying that she strives to get bettter! Hang in there!