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Slow Recovery

MLC53's picture
MLC53
Posts: 109
Joined: Sep 2007

I feel like I've hit a plateau in my recovery from tonsil cancer. I am almost 3 1/2 months post rad/chemo treatments. I can sip water and eat light soups, but still need the peg tube for adequate nutrition. My problem is that my throat and esophagus hurt quite a bit when I swallow and my saliva is still a little thick. Can anyone tell me if they went through this? And can you tell me if my saliva and eating will ever get back to normal? I have been without eating regular food for so long (6 mos) that I can't even imagine myself ever eating normally again. Even a small burger looks scary to me...like it will always be too big for me to swallow! I am scared of that!

cuzzy
Posts: 15
Joined: Sep 2007

I am sooooo relieved to know that I am not the only one having a slow recovery. Every step forward is followed by half a step back. I have never had a feeding tube (had a tube in my nose in the hospital), but since I'd learned to eat with half a tongue previously, I was able to eat solids, enough to be released from the hospital out the nasal tube. My surgery was May 10, a total neck resection which cut the nerves going to the left side of my mouth and throat and cut my vocal cord on that side. The surgery was followed by six weeks of radiation. And that was the worst...now, 10 weeks post treatment, I cough and hack my way through the day and although I've been able to eat a few solids, I too can never picture myself eating normally again. The doctors tell me I will, but since they have never actually been through this, I don't think they really know. The thick saliva is a huge problem...now I have thrush and it's not responding to treatment. Do you realize how many TV ads are about food? Each meal takes me an hour and I feel tied to the house since I have to eat at certain times to get enough calories to maintain my weight. I've been without eating like a normal person for almost six months (had trouble swallowing before my surgery) and often feel discouraged. My main hope and prayer is that the docs are right and things will get better...hope it at least helps to know there is another person out there that is feeling that she's reached a plateau and is scared about what the future holds (no more dining out?). Food used to be a joy for me, both cooking and eating...it is no longer, it's a chore and a mountain to climb.

MLC53's picture
MLC53
Posts: 109
Joined: Sep 2007

Cuzzy, thank you for your reply. Sounds like you've had it rough! I'm surprised the docs never gave you a feeding tube. My oncologist has them installed for all of his head and neck cancer patients. Thanks for being able to empathize with my slow recovery phase, too. It can be a drag...literally! I hope the docs are right for both of us. Good luck to you and keep us posted on how things are going for you.

launicahog
Posts: 6
Joined: Aug 2007

It will get better, you can work through this and yes you have ever right to be scared. We all are scared. We have not done this before. What should we expect, what is normal and what is'nt? Will it get better? When? All questions that weigh on us mentally on top of the physical issues we are dealing with.

But understand this. You can work through the discomfort of swallowing and eating. It will be uncomfortable, but that will begin to lessen as you continue to push yourself alittle further each week. Yours is a natural reation. I'm in pain and I don't want to hurt myself anymore than I'm already hurt. Push alittle. See what happens and back off some if you need.

As to the saliva. At first it would'nt turn off. Then it was as dry as straw. It now is OK. Not great but OK. I drink fluids during a meal and of course some food "goes down" better than others.

You can do it. Feel good about the progress you've made and look forward to the continuing progress ahead.

BugHunter's picture
BugHunter
Posts: 152
Joined: Oct 2007

Hello, My name is Bill and I am living in the nashville Tennessee area.
Sounds like you are getting liquids down your throat sooner then I did! My last treatment was 3/28/2007. I had to go back to work 06/01/2007 and was still fully on my tube (nutren 1.5). It was around the 1st of july that I started getting anything down me and here it is October 11th and just today I ate at Taco Bell for the first time post treatment! (chalupas rock!) Sounds like you are on track, so don't get down, the light at the end of tunnel is NOT a train!

P.S.
My hunny got sick of me in late May trying to convince her I would never again be able to eat solid food, to this day I keep hearing "I told you so".....................glad she was right!

3_Putt
Posts: 19
Joined: Sep 2007

Hi everyone. This is my first post here. I had tonsil cancer and am 14 months post treatment for stage 3/4. I had surgery, radiation and chemo (Erbitux + Cisplatin).

Things will get better. At 6 months post, I was able to eat, but not enjoy it. Now I'm pretty much back to normal. So much so that I've gained back the 50 pounds I lost :( Once I was able to taste again, I ate like there was no tomorrow.

I looked at the rules and regs about posting URL's and didn't find anything saying I couldn't, so here is a link to my treatment diary. I think my rate of recovery were pretty typical.

www.howstom.com

Mods, if this is against the rules, pull the post. I thought I'd post it because I've received a lot of email telling me it's helped.

Everyone, hang in there. I thought I'd never live a normal life again, but (knock wood) things are going pretty well.

I hope to get to know everyone better,

Tom

carol59
Posts: 2
Joined: Oct 2007

My husband is about 6-7 weeks out from completing chemo and radiation treatment and his story sounds very much like yours. I cannot wait to share this site and the comments I am seeing with him! I am also getting some much needed insight into what is going on for him. I am a breast cancer survior but what he has gone through seems to be so much worse.

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