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At My Wits END! Argh....

kimmygarland's picture
kimmygarland
Posts: 313
Joined: Aug 2009

My husband has hypopharyngeal cancer and is currently in the middle of rads and chemo. Has completed 23 of 33 rads, may or may not have another chemo session, depending on how his labs hold up. Does not had a feeding tube (his stupid choice), but was doing ok with hydration until last weekend. On Monday when we went in to chemo clinic, his potassium was way high, kidney function down and he was dehydrated. Doc immediately sent him to hospital.

They spent the next 48 hours (Monday and Tuesday) hydrating and getting his labs back in line. Hydration did most of it. Then they started talking about putting in feeding tube. He agreed. This was Wednesday. They came Wednesday afternoon to discuss and said the way they do it is to place NG tube in nose, blow air in stomach and then insert tube. Well, when they tried to get the NG tube down in nose/throat it would not go. There was blood everywhere, apparently he was not anesthetized enough and was in great pain, etc. So then they say, tube must be placed surgically. Husband not happy, but said he would do it, as of Wednesday afternoon. This was going to involve full surgical "stuff" - ventilator, general anesthesia, etc....

This morning when I arrived at hospital husband is dressed and pacing the hall, saying he has changed his mind about the feeding tube and he is leaving. I told him he may want to wait and see a doc before he just up and leaves! He said he had been up all night thinking about having major surgery for an implement he will possibly only need 6-8 weeks. We had already been told they could hydrate through the port and feed through TPN (again through port) if necessary.

So, we talked to 3 doctors and they agreed that he makes a little sense, as there is always risk with surgery and he is diabetic, has COPD, etc.

Tomorrow a home health nurse will come to the house and teach us how to hydrate through the port. They delivered all the "stuff" tonight and I am a nervous wreck. At this point he is still able to get enough liquid nutrition down, just not enough water to stay hydrated. I am not a nurse, but I'm also not stupid, so I can learn to do this - it just scares the krap out of me.

This has been a long, terrible day and I'm glad it's over. He is settled, had his nutritional shake, a bottle of water and a little diet coke and seems to be ok for the moment.

Ten more treatments... they can't be over soon enough for me.

thegirlfriend's picture
thegirlfriend
Posts: 147
Joined: Sep 2009

My boyfriend is 2 weeks post treatment tomorrow. He just had the tube put in surgically.
discomfort same day and yesterday, didnt mention it today. My point is, that what you plan on and what really happens as far as treatment and side effects are two things alot of the time. He thought that after all 6 weeks, 42 rads and 6 chemos, still has his port, that he would be able to get thru it. His throat feels like shredded raw skin and swallowing chards of hot glass against it. My point is that he finally broke down and decided he couldnt do this food thing alone, he needs help. Even after all this time, he didnt care how long he would have the peg, he just knew he needed help now with nutrition or he would never start to get better with no fuel in him. He has lost 40 pounds and not eating. He is now adjusting to feeding himself this way, and at least he is getting 2 "meals" that he wasnt able to get down before Wednesday. Dieticians want him up to 4 feedings a day at least. Im rather relieved to be honest. I know he didnt want to have to do it, but he did and he will use it for however long he thinks he needs to have it. There are so many other side effects and things he needs to worry about, but now he is not as stressed to make sure he gets food in him. He did say that its kind of weird to get that full feeling and not have done anything with solid food to feel that way. very unsatisfying he said. you see, my boyfriend also went to culinary school for a while and loves to cook. unjustly poetic isnt it?

pmfennell's picture
pmfennell
Posts: 28
Joined: Jun 2009

Boy, it sounds like you have been through hell. I had a feeding tube put in before I started tx and was glad I did. It was uncomfortable to have it done and I had to have it move from my stomach to my lower intestine, so I went through this procedure twice. I had it done at a large hospital in radiology. They gave me pain killer as I needed it, as I was awake for the procedure and it did hurt, but I was glad to have it. As I went through tx I kept loosing weight and kept using the feeding tube and whatever I could swallow which was not much. I really started to loose weight after tx ended and my body was trying to repair itself from all of the tx. After tx, I was taking in 4000 calories a day and still loosing weight. I stopped loosing weight at 170lbs and began to put weight back on. I would use the feeding tube overnight so the food would go in while i slept. I had to wake up once every night for 3 months post tx, but it worked out well. I began tx at 235 lbs and went to 170lbs. I am now at 193 and doing well. The method you described sounds awful. Perhaps you should consider another tx center . . .

kimmygarland's picture
kimmygarland
Posts: 313
Joined: Aug 2009

I think I must not have been very clear about the feeding tube situation. The doctors did everything they could to convince him to get it - it was his decision not to get it, and then they basically said ok... then we will proceed in this direction. We are at a major university hospital and have gotten great care. No way would we consider changing hospitals/doctors.

We have completed chemo/erbitux, and have 2 treatments tomorrow and then finished. He weighed on Thurs at RO doc and he had not lost any weight for the week prior. This last few days he hasn't been getting all his nutrition in due to having 2 treatments per day and he is totally exhausted, plus he is nauseated, and doing a bit of vomiting, they think from the blood and mucus he is swallowing down his throat (upsetting his stomach). We are trying different nausea meds. Docs say this should subside soon... I hope so. This is his worst issue right now. We are hydrating at home daily via his port.

Ready for tomorrow and final treatment to be over. We realize we will still have a couple of rough weeks but at least he will be past the actual treatments and not have to have his head bolted to that table anymore. I think that has also been causing him much stress.

Bottom line - he is experiencing all the normal krap from this awful treatment. Good news is that RO doc scoped him Thursday and said he sees no tumor at all. Of course PET scan will tell the definitive story - but for now that was good news.

pk's picture
pk
Posts: 192
Joined: Aug 2009

Hang in there. My husband went thru 8 Erbitux treatments and 35 rads. He is now 7 weeks out and doing pretty well. No more feeding tube, eating and drinking - altho food doesn't taste too great yet. He is getting his energy back too. He meets with his ENT every 4 weeks and will have a PET the first week in Jan. So keep on keeping on. It does get better!
PK

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

kimmygarland- I had/have NPC, so my cancer might have been more nasal than of the throat. I hope you and your husband become as amazed as I was about tissue getting healed- it will. I had two tumors on the left side of my neck, and got 34 rads in full head and neck treatment. Recovery, for me, did not take long- returned to work a month after my last rad in early-April. Yeah, I still have swelling, and my gum tissue still is a constant reminder, but things are great in comparison to how bad things got. You and your husband believe that recovery will be quick-it just might amaze you on how quick it can happen. Believe.
kcass

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