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Caregiver in need of help

KimStG
Posts: 2
Joined: May 2010

My boyfriend has been diagnosed with head and neck cancer. Is in week 3 of chemo and radiation. He has a PEG tube but refuses to use it and I can not get him to use the ENSURE drinks or even Instant breakfast shakes. He now has fungus in mouth and is very sore. He gets rads Mon-Fri and Chemo every Mon for a total of 7 weeks. His chemo is Cisplatin. How do I get him to take the nutrient suppliment since he can not eat solid food? He is very stubborn and about to drive me nuts because I am so worried. He did so well the first 2 weeks but this past week has been really bad as he can not eat anything. He can still drink ok but says that everything tastes like sh--!

Mb731
Posts: 12
Joined: Apr 2010

Kim,

I think what will happen is he will see his weight drop drastically once he won't be able to swallow. My husband has a peg tube and has lost about 35 lbs due to not being able to tolerate the formulas. So now he has a PIC line and is getting TPN directly into the vein. He was very sick and ended up in the hospital due to a ton of complications! If there was a complication to be had- I think he got it.

After 19 days he will be coming home FINALLY! He had to take a 2 wk break in the radiation and chemo. All I can say is nutrition is essential to keeping as healthy as possible. I would give him a week but I would think that he will come around soon because of the changes he will be seeing.

After 2 wks into radiation my husband could barely swallow his own saliva. Keep me posted...best wishes.

Marybeth

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Spell out the facts, Kim- Nutrition gives the body the ammo it needs to fight the good fight. He's got the PEG- so use it. I started getting all my Nutrition via the tube at the end of week #1- Jevity formula. Best road for him to take, now, is with pouring the good liquids down the tube. Marybeth, above, described a worse way, and what he's looking at if he continues to opt-out of the PEG feedings. I used the most concentrated Jevity formula out there, rather than the 1.5, and got by okay. Sure, I still lost 17% of my body weight, but I got all my Nutrition thru the PEG for seven weeks, including the 1 1/2-month time of morphine and ice; however, I returned to work a month after my last rad, and am now on the verge of being an 18-month Survivor. HE CAN SURVIVE THIS AND GET BACK TO AN ENTIRELY ACCEPTABLE LIFE, Kim- but he has to fight the good fight, and the way to get that done is by PEG feedings. That is the best route for him. He has to give himself a chance by getting as much Nutrition as possible- the body needs it to fight the good fight.

He ain't nowhere most of us have not been, Kim. Let him know all of this is fact. He's got it easy compared to some, here, who are many-year Survivors. He's got the tube, so use it. Kim, this is battle with the Big C. This ain't no walk in the park. He's in a fight for his life- a fight we have all fought and won. He has to help himself win this battle. And, Kim, refusal to use the tube does suggest a problem that goes beyond the physical. Yes, there are "regularity" problems, etc., but everyone in C&R experiences those hassles. That's all just part of the battle. Humility is known by all of us, though every one of us knows it for what it is/was= necessary to win our battles with the Big C.

Kim- reckon it's time for him to roll-up his shirtsleeves, take his belt in a notch or two, re-tie his shoestrings, and find himself a kinda-mean grin to be wearing. If he chooses not to do that, Kim, and use the tube he went thru the hassle to have installed, then he really does need to talk to someone. He has C, as we all have, and have done what is necessary to win our battles. Could be a time for you to lay down the law with him. He can, and will, survive this- if he wants to. And do check-into the Jevity. AND, KEEP US INFORMED.

Believe

kcass

KimStG
Posts: 2
Joined: May 2010

Thank you for the info and the advice. He had a good day today. He actually ate! Had oatmeal for breakfast and then a donut, ate a piece of very soft pizza bread for luch and then had some fish, boiled potato with butter and corn for dinner! Even had some really creamy cheesecake for dessert! So now it's back to chemo and rads tomorrow and hopefully can get him to do a couple of ensures while he is up there!

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

Hi Kim, Kent Cass pretty much covered it. I have had a peg since I started treatment, and I'm still using it 6 weeks post treatment. I eat some now, and am beginning to try and move more toward regular eating, but certainly my taste buds are still not back to normal, and nothing I've tried yet tastes very appetizing.

As suggested, you can't make your boyfriend eat, but he does need to understand how important it is to get the nutrition so he can make a decision, because he's making a decision now by not acting.

Maybe you could print out a few of the posts on the subjec and leave a couple, or one, where he can see it. Everybody loses their tastes, most everybody used or is using a feeding tube, gratefully. There is a long thread on the peg tube that's current you might look over. Best to you and your boyfriend.

Hal

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi Kim,

The guys have said everything above. Maybe tell him to email or talk to us via this site. There are dozens of us here who have been there and WE DO KNOW what is going in with these treatments.

My PEG saved my life. I had it installed in week 3-4 of treatment. He needs the nutrition to survive. His body is being battered by radiation and poison (Chemo & medications) and must have sustenance to get through the next couple of months and then recover. Advice is often best to come from outside rather than those closest. Ask him, "what would happen if he stopped eating for 4 weeks ?" What would happen ? Now add the beating he is getting and go figure.

Don't take it personally as he is no doubt going through emotional stuff and may have difficulty even talking about it or maybe even identifying these issues. This a normal situation for those in his predicament. Note also once his treatment is over, he will still have a long way to go and it can even get worse before it gets better so the faster he wakes up and starts using the PEG, the better.

Wishing you all the best getting the message across.

Scambuster

rozaroo
Posts: 667
Joined: Apr 2010

I am sorry that you are going through this. I gave my hubby a hard time with the Peg
when it was first put in. I had no appetite & was sick to my stomach every morning. My
nutritionist & hubby scared the hell out of me then the lightbulb went on. I am now two
month's post teatment & survived 38 radiation treatment's & 3 Cisplatin. I only lost a
total of eight lb's. I am lucky to have my hubby as I could not have made it without him.
Don't give up some of us are just so stubborn. I just wanted you to know I truly feel for
you.
God Bless
Roz

Hondo's picture
Hondo
Posts: 5670
Joined: Apr 2009

As a caregiver this is one of the hard parts for you both, I was not the best of person when going through treatment my first time, gave my wife and everyone else around me a very hard time. I believe this was because there was so much changing in me, I did not know how to deal with it and there was no one who I could ask for help that I trusted.

There is a lot of very good advice here on these post, I believe the best help is like Scambuster is saying get him to talk to others who have been through this treatment. Somehow there is a command bond that forms between people when you can talk to someone who knows what you are going through.

Also like Kent is saying the stronger his body is the better he will be able to fight the cancer and get back to normal. If we can help please let us know.

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