Is my husband going to be able to eat again?
I don't post here very much (only once before), but I read, read, read. The knowledge and support I've gotten has given such relief. Thank you all for that.
My husband just had robotic surgery in his throat and on his tongue last week. They removed 2/3 of the base of his tongue, and a lot of cancer/damage to his jugular, and a nerve that helps with swallowing, and several lymph nodes. The surgeon did a neck dissection to remove the lymph nodes and to remove some of the cancer that the robot could not reach.
Two-thirds of the base of the tongue sounds like a lot to me. The doctor said he is "hopeful" that my husband will be able to swallow again. He will be getting speech and swallow therapy, but we've already accepted that he won't speak the same again. Fine, whatever. I'm glad he's alive.
My husband and I are gourmet cooks and also public speakers on several different topics for both work and civic activities.
What kind of quality of life will he have if he can never swallow or eat again?
And with 6 weeks of radiation coming up, how much more damage will that do? The chemo prior to the surgery nearly killed him sometimes. Radiation sounds awful. I've read in some places where people refer to it as "cooking", and it scares the hell out of me.
I'm trying so hard to hold it together for him, but my God, I'm scared. He's already losing his confidence because of his loss of strength and the speech impediment. He says keeps apologizing for leaving me married to "an old man who sounds learning disabled". Those are his words not mine. It's his anger coming out, I guess. He's only 15 years older than me, and I don't care what he sounds like when he talks.
But food and wine have been so much a part of our lives. Will he ever be able to enjoy them again?
Comments
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Hi Em
I am so sorry to read about your husband. There is really know way any of us can answer your question for you. My doctor was also hopeful that I would one day be able to eat again. I have not gone thru all of what your husband has and will deal with, radiation side effects have caused me many eating issues. I was on a peg tube for 18 months and have been clawing, scratching, biting my way, fighting tooth and nail to eat again.
As a person who lived to eat and also enjoyed cooking immensely it really has been a hard road. (i have done catering and worked in a bakery) Just be aware and patient. I was very, very depressed and had to increase my meds for depression. Some people bounce back quicker than others.
It's not easy and it can take time, but there is hope.
I wish your husband only the best. Hope you will continue to post. I can really be great support. I'm glad your husband has you by his side. Take care of you, too.
Blessings,
Sweet0 -
Look at Steven Hawkinssweetblood22 said:Hi Em
I am so sorry to read about your husband. There is really know way any of us can answer your question for you. My doctor was also hopeful that I would one day be able to eat again. I have not gone thru all of what your husband has and will deal with, radiation side effects have caused me many eating issues. I was on a peg tube for 18 months and have been clawing, scratching, biting my way, fighting tooth and nail to eat again.
As a person who lived to eat and also enjoyed cooking immensely it really has been a hard road. (i have done catering and worked in a bakery) Just be aware and patient. I was very, very depressed and had to increase my meds for depression. Some people bounce back quicker than others.
It's not easy and it can take time, but there is hope.
I wish your husband only the best. Hope you will continue to post. I can really be great support. I'm glad your husband has you by his side. Take care of you, too.
Blessings,
Sweet
Would you say he has a speech impediment? Yet I think he is a fabulous public speaker and quite successful at that. As far as enjoying food and wine again he might find that his ability to eat the old way is no longer possible nor pleasureable and will adapt as necessary. My diet is much more guarded and restricted than it used to be but I get along. I personally don't think "wine" is going to be a priority any longer and think he will arrive at the same conclusion. Alcohol, especially wine just dries out the mouth lining so much that he just won't enjoy it any longer.0 -
it won't let me edit mysweetblood22 said:Hi Em
I am so sorry to read about your husband. There is really know way any of us can answer your question for you. My doctor was also hopeful that I would one day be able to eat again. I have not gone thru all of what your husband has and will deal with, radiation side effects have caused me many eating issues. I was on a peg tube for 18 months and have been clawing, scratching, biting my way, fighting tooth and nail to eat again.
As a person who lived to eat and also enjoyed cooking immensely it really has been a hard road. (i have done catering and worked in a bakery) Just be aware and patient. I was very, very depressed and had to increase my meds for depression. Some people bounce back quicker than others.
It's not easy and it can take time, but there is hope.
I wish your husband only the best. Hope you will continue to post. I can really be great support. I'm glad your husband has you by his side. Take care of you, too.
Blessings,
Sweet
it won't let me edit my post.
It is supposed to read, "hope you will continue to post. IT can really be great support..."'
I am not sure I can be such great support.
Lol 0 -
Enjoy
Hi Em, sorry to hear of the tough treatment your husband has to go through. Mr. Face is right--don't like to call him Ratface because he's a great poster. The subtle tastes of wine will likely be overcome by the harshness of the alcohol. Only time, treatment, and patience will tell how much and what he will enjoy eating. I'm enjoying a lot of food tastes now 9 months after treatment of rads/chemo/neck dissection. Radiation treatment will be rough, but it will pass quicker than you think. Nothing for your husband to apologize for, none of us ask for this. Keep your heads up, it will get better, and food and wine notwithstanding, he will be able to enjoy life again.
And Sweetblood, it reads right either way.
best, Hal0 -
Hi Em,
Hi Em, I am relatively new to these boards also and I'm sorry about your husbands diagnosis. I have undergone 15 our 33 radiation treatments and it is awful. In fact some days I want to give up, but that would be stupid of me. A 30% chance of the cancer returning or 5 to 10% chance of return. I do feel "cooked", but what is the other option? Death is just not an option for me right now. Also I love, love, love to cook and eat. I may not be gourmet, but I'll tell you that is the hardest thing for me, but I have found that there is much more to quality of life than swallowing and eating and I hope your husband does too. I also talk funny, I have a speech impediment and a giant scar across my neck, but you know what I where my scar proudly, I'm a cancer survivor. I have to repeat myself alot when ordering stuff, but who cares, We are survivors! He needs to get mad at this disease, it does not have the right to make him feel the way he does. He needs to find a way to take it's power away. I do that everyday when I go to radiation and count those zaps of the rads, I rejoice knowing it may be killing those cancer killing cells. If he can't ever enjoy food or wine again there are a billion other things to take it's place. I have found that out. It is a journey and a new way of life. Your right in the thick of it, give it time and once treatment is over then life really begins and we find our "new normal" Happy Holidays, Shelly0 -
god bless caregivers
EM, The "new normal" is a phrase we use a lot here. We all have one, but everyone's is slightly different. We have all changed since we have dealt with cancer, both inside and out. God gave us the grace to stay when a lot of others could not. I think cancer is so hard on our soul because it causes a death of the future we hold in our minds for ourselves. We greave over that. Your husband is greaving over that; maybe you, too. We all admit the walk through treatment was hard. Surgery sucks. Chemo sucks. Radiation sucks. But we are still here and doing darn well, if you ask me. Caregivers have such a special role in all this. When you have specific question about some phase of this, just ask. You are his caregiver; we will be yours.0 -
treatment
Em, My wife has base of tongue cancer which spread locally to 2 lymph nodes in her neck and her doctor ruled out surgery from the beginning. Connie (my wife) has been doing her chemo for past 4 weeks. She has struggled with it also but she is hanging in there. Her treatment is 9 weeks of chemotherapy, she does 3 week regiments of induction chemo ( Cisplatin, Doxetaxel, Cetuximab on 1st day followed by 5-Fluorouracil delivered with a pump over the next 4 days at home) the 1st week, followed by cetuximab ( the 2nd week) followed by 3rd week off. This 3 week regiment is repeated 3 times which adds up to 9 weeks of chemo. Then she will be doing 7 weeks of radiation following the completion of chemo. She may also be doing Carboplatin once a week during radiation. She has been in the hospital for the past 3 days because the diarrhea after chemo has been so bad causing severe dehydration but her tumors really shrunk after her 1st treatment of chemo . My question to you Em is whether your husband's tumor was not responding to chemo forcing your doctor to do surgery because it just sounds like a lot of surgery which has affected your husband's quality of life in such a negative way. I thought that chemo was supposed to shrink the tumors, base of tongue and lymph nodes so radiation could finish off treatment. Radiation does cause serious burns but if you can survive these treatments (chemo and rads) you should have better quality of life than to just try to remove so much in surgery. I am not a doctor or an expert but it just seemed like our doctor would not have elected to do that much surgery with that much collateral damage. Your friends, Homer & Connie Price0 -
Charles55 wow, talk about profoundconnieprice1 said:treatment
Em, My wife has base of tongue cancer which spread locally to 2 lymph nodes in her neck and her doctor ruled out surgery from the beginning. Connie (my wife) has been doing her chemo for past 4 weeks. She has struggled with it also but she is hanging in there. Her treatment is 9 weeks of chemotherapy, she does 3 week regiments of induction chemo ( Cisplatin, Doxetaxel, Cetuximab on 1st day followed by 5-Fluorouracil delivered with a pump over the next 4 days at home) the 1st week, followed by cetuximab ( the 2nd week) followed by 3rd week off. This 3 week regiment is repeated 3 times which adds up to 9 weeks of chemo. Then she will be doing 7 weeks of radiation following the completion of chemo. She may also be doing Carboplatin once a week during radiation. She has been in the hospital for the past 3 days because the diarrhea after chemo has been so bad causing severe dehydration but her tumors really shrunk after her 1st treatment of chemo . My question to you Em is whether your husband's tumor was not responding to chemo forcing your doctor to do surgery because it just sounds like a lot of surgery which has affected your husband's quality of life in such a negative way. I thought that chemo was supposed to shrink the tumors, base of tongue and lymph nodes so radiation could finish off treatment. Radiation does cause serious burns but if you can survive these treatments (chemo and rads) you should have better quality of life than to just try to remove so much in surgery. I am not a doctor or an expert but it just seemed like our doctor would not have elected to do that much surgery with that much collateral damage. Your friends, Homer & Connie Price
"I think cancer is so hard on our soul because it causes a death of the future we hold in our minds for ourselves. We grieve over that."
You have managed to put into two sentences what I feel everyday. Yes I grieve everyday just as you have stated. I'm estatic to still be alive but a part of me is kind of dead, being that, "future" part you speak of". I'm working on comming to terms with that and realize that tomorrow is not guranteed to anyone but we do have a heightened awareness of the concept. Thanks for putting the feeling into an identifiable concept.0 -
Challenging Life Itselfratface said:Charles55 wow, talk about profound
"I think cancer is so hard on our soul because it causes a death of the future we hold in our minds for ourselves. We grieve over that."
You have managed to put into two sentences what I feel everyday. Yes I grieve everyday just as you have stated. I'm estatic to still be alive but a part of me is kind of dead, being that, "future" part you speak of". I'm working on comming to terms with that and realize that tomorrow is not guranteed to anyone but we do have a heightened awareness of the concept. Thanks for putting the feeling into an identifiable concept.
Our chemo guy says H&N cancer treatment "challenges life itself - eating, drinking, breathing and speaking." On the other hand, he points out that we can hit H&N cancer so hard because of the lack of nearby sensitive organs, so it is one of the highest cure rates.
We worried about some similar things - Doug speaks several languages well, and 3 fluently. This is important to his work and to who he is. He also has a second (sometimes) career as a voice-over actor. We knew he might lose some or all of this with treatment.
I am not a gourmet cook, but I have my moments. He liked eating what I cooked, moments or no. He also travels for his job and we used to travel a lot when we lived overseas - a lot of our memories are of the "remember that great little restaurant. . ." type. We knew that might never happen again.
When he almost died in the hospital, our priorities changed. I was happy to have him be able to put more than 3 words together without having to spit or cough. He celebrated the day he could eat soup (couldn't really taste it, but he swallowed it!). We then worked our way up. We are at the stage where he can talk on the phone for minutes without clearing his throat. The other night, all the kids were at sleepovers and I made pots of hot crab dip to go with some very soft bread. He could taste much of it. Yay. In two weeks, he is off to Mexico for his first work-related trip in months. I will try not to panic too much.
This is the time we realize we are more than we have been. It is very much like growing up all over again, except without the toys.0 -
Eating & Speaking
After radical neck dissection and radiation and chemo for my cancer I have been left with severe swallowing problems and my speech is also affected by the radiation scarring that occurred during treatment. I had a PEG in for about six months to allow me to survive. I lost a total of fifty pounds from a very muscular body. I to speak in front of groups of people and feel very apprehensive about my voice when I am speaking. I am unable to socialize with people so far as going out to eat in restaurants etc.. All my food has to be specially prepared. There is no enjoyment in eating anymore as I eat only to survive. I go through bouts of depression and feeling sorry for myself at times and also apologize to my wife who is also younger about having to be with a old disabled man. She just tells me that she loves me the way I am and is thankful I am still alive. Time does heal things however and I now have less pity parties than I used to have. I am about four years out of treatment now and thankful for every day I have.0 -
Dittoratface said:Charles55 wow, talk about profound
"I think cancer is so hard on our soul because it causes a death of the future we hold in our minds for ourselves. We grieve over that."
You have managed to put into two sentences what I feel everyday. Yes I grieve everyday just as you have stated. I'm estatic to still be alive but a part of me is kind of dead, being that, "future" part you speak of". I'm working on comming to terms with that and realize that tomorrow is not guranteed to anyone but we do have a heightened awareness of the concept. Thanks for putting the feeling into an identifiable concept.
Charles,
Ditto what ratface says. What a great thought Charles!!
Another quote from this site that I've put in my "quote book".
Happy Holidays everyone!
Greg0 -
Everyone is differentsportsman said:Eating & Speaking
After radical neck dissection and radiation and chemo for my cancer I have been left with severe swallowing problems and my speech is also affected by the radiation scarring that occurred during treatment. I had a PEG in for about six months to allow me to survive. I lost a total of fifty pounds from a very muscular body. I to speak in front of groups of people and feel very apprehensive about my voice when I am speaking. I am unable to socialize with people so far as going out to eat in restaurants etc.. All my food has to be specially prepared. There is no enjoyment in eating anymore as I eat only to survive. I go through bouts of depression and feeling sorry for myself at times and also apologize to my wife who is also younger about having to be with a old disabled man. She just tells me that she loves me the way I am and is thankful I am still alive. Time does heal things however and I now have less pity parties than I used to have. I am about four years out of treatment now and thankful for every day I have.
Em,
I am also sorry to hear about your husband's tough treatment. I am a bit different in that I had SCC to tonsil. I too had mets to several lymph nodes including 2 that were "attached" to each of my jugular veins. One jugular was removed along with a lot of muscle and nerves. ENT initially said swallowing may be tough and talking might be "off" a bit along with possible problems with shoulder movements. I am 8 months out. An old friend of mine is 4 years out from base of tongue cancer. We went out to dinner the other night. Nothing gourmet, but we both ate (he more than myself) and enjoyed it thoroughly. He had a couple glasses of wine (I'm abstaining til I'm a year out). I still can't eat bread and doubt if steaks or most meats will ever go down easy either, but I can always find something to eat when I'm out. We both speak a lot as part of our jobs, giving presentations and managing large groups of people. We talked about that and besides having to have a bottle of water when we talk, we both do as well as we did pre-c. My voice can be a bit scratchy at times but those times are farther and fewer in between lately. Plus my shoulder is 100% compared to pre-surgery. Having said all that, you'll hear this a lot on this site - "Everyone is different". Some have it worse than others. I consider myself right in the middle. Treatments were tough, but recovery for me has gone pretty well. The docs are going to give you the worst case scenario and the worst may happen. Then again my "new normal" is not near as bad as the docs said it might be and I'm getting better every day. Don't be too discouraged (it's easy to get that way though) and here's hoping your husband can beat the docs swag (scientific wild **** guess) on how his "new normal" will be.
Good luck, keep positive and let us know how things are going.
Positive thoughts headed your way!
Greg0
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