Ive been done with radiation for a month and I still can't eat anything other than boost shakes with benecalorie. While I'm not looking for nutritional suggestions I am seeking details. Constantly someone will reply to someone's topic, answer but leave out the details that make their answer comforting to the person who posted it.
Why, exactly couldn't you eat post radiation?
How long before you were able to eat normally again?
What was the process like and how did you get back to solid foods? Did you work up to it or wake up one day and could eat again?
I KNOW everyone is different but the absolute worst part of all this is the not knowing which makes comfort in the details.
Right now I have 2 issues going on (besides the fact I can't speak because of the amount of thick salvia). The first is kind of hard to describe and if anyone has had anything like this happen to them post radiation please share your details with me. At first I thought my tongue was getting stuck to the roof of my mouth and in my sleep I was ripping it off but now I kind of think I may be sucking hard on my tongue to the point of me waking up. I am not sure which but this makes the top of my tongue unable to tolerate the touch of anything. The top of my tongue is raw
I'm also dealing with my tongue seeming to have no clue what to do with the food once it is in my mouth.
I tried a piece of pizza last night out of desperation and besides the fact it tastes completely different then how it use to it was do hard to manipulate.

Just tell me now if boost is all I have in my future. I'm beginning to come to terms with the fact that my quality of life is zero.

John,
I wish you felt better, but I do not think you are coming to terms with the fact that your quality of life is zero, because you are reaching out.

Anyway, I could not eat very much for the first 4 weeks. I made myself eat through treatment so that helped my transition. Soft foods like pudding were too thick for me. Some soup I could eat, pureed really well. People brought over food. I wanted to say, "Is this for me? I can't eat it AT ALL." I guess it was for my husband, which was ok, he needed it too. Lots of things hurt my mouth & tongue. It was frustrating but I believed what people said about getting better. I worried about other things, but not about being able to eat again.

Yes, one day, don't know which one cause I did not write it down, I got up and went to the refrigerator and pulled out a casserole dish someone had left, and I slightly heated it, so it would be softer, and I just knew I could manage it somewhat.
Oh, it took me over half an hour to eat half a dozen bites. But that was progress.

It just very gradually got better. It took me a long time to eat a meal for months. I did not write that down either, so don't know exactly.

The tongue thing you described, I can't say I understand that. Might be because of lack of saliva, and it is dry. Can't say for sure.

I can't imagine me eating pizza at one month out for sure--you are braver than you know. Of course it will taste differently! Your taste buds are probably not working very well at present. They will improve over time. You probably don't have saliva, that makes it tough too. I started getting some back before I was at the year mark, but have much more now at 18 months out. IMO it is ok to be drinking Boost right now, along with trying small amounts of foods, easy foods to eat.

This reply may not be just right for you, but it is as good as I can do without making the post really long. Recovery is an exercise in patience (we're called patients, aren't we?).

Best,
Anne

Hi John of arc,
After we have been through so much we want everything to go back to normal right now. I still am on a peg tube in which they told me 2 months ago I would never eat again. I paniced and started to do a bunch of research. I was able to get another opinion outside my hmo who worked with my ENT and found another option for me. I just had botox shot into what they call bars (muscles that are hard as rock is the best way to explain it). This is day 3 and I can swallow water much easier, but I do understand I have to keep doing my swallow excersies provided by my speech therapist and this could take a couple of months to actually eat. It has been over year since I have been able to eat, but I use this site and have a lot of people to support me to keep me going. There have been days I wish I could just give up but realizing that it would be selfish of me due to all of the people who have supported me. Please just take time to heal and know you will be able to eat and listen to these peoples stories to give you hope.

Anne- thank you. That was exactly the kind of info I was looking for. I've noticed a change in my appetite too. Instead of having 3 boosts a day with benecalorie added, which was a chore, I'm now having at least 4 if not 5 or 6.
And as for the pizza- I just wanted to taste it, ya know? It was one of my favorite foods before all this happened and I was determined to get a bite down.
I just feel like i'm at a stalemate. Nothing is really getting worse but nothing is really getting better.

John. I have a colorful history similar to yours as I tried to recover from my treatment. In short, I ended treatment on May 27, 2011 and really couldn't eat for the next two fo three months. I did get some Boost down and some soup but mostly it was the feeding tube that kept me alive. I swallowed water every day to keep my swallowing muscles working but it was very painful and a real chore. In late August I started to puree my food and just did my best to "drink" a normal meal. It was another month before I could even try to eat, say, a bowl of cereal but from September on I started to swallow better. It was 3 full months of hell AFTER my treatment before I could eat even somewhat normally. I had the feeding tube removed in late September and have been doing better ever since.

Jon, I hurt for you. I am a VERY angry survivor. And I sense in you the need to get right down to it, so this is what I can offer re your tongue not knowing what to do. That is exactly how I describe my inability to swallow food. I just can't get most things (and I haven't tried much) to go anywhere unless I wash it down with water. First off, I want to remind you that I'm a bit ahead of you in recovery. And things HAVE improved. Even though I hate where I still am (still have PEG tube) they continue to improve. I had c couple tests done early this year and results basically were that my throat and tongue were still irritated fom radiation. This was 7 months post radiation. I FEEL your frustration. I have issues with liquids and food going up my nose. My ENT says my tongue just isn't working right YET and it's pushing crap up my nose. But he says my anatomy looks good.
So, I hope this helped some. There's probably a lot more I could tell you that'll come to me later. But, honestly, it has gotten better. Not at my pace and that's hard to accept when you don't have control like you used to.
Shoot me more questions if need be. Good to be here with you all finally. If only I had known about this website a year + ago. I might've done some things different.
-Wendy

And, Wendy & John, it is that lack of control you alluded to that contributes to our anger! All of us lost control of some of our most basic functions to this disease, such as eating food without having to do so much planning and thinking, or having to use a PEG. And so on . . . which is why I think it is important to find an outlet whereby we regain some control.
I am angry at times too, believe it or not, but I recover from that when I get busy with a project or do some exercise or take a walk.

It's a work in progress for me.
Anne

I checked the timeline Journal I kept for John. One month out of treatment he wasn't getting any nutrition by mouth it was all through the PEG. He was drinking water every day and the mucus was still pretty bad. The following is from the journal:

June 10, 2009 � I can�t believe it has been a month since I wrote anything in this journal. John is 8 weeks out of treatments today. John is continuing his slow recovery but doing (I think) a lot better. John is finally talking again, YEAH! I really missed being able to have �conversations� with him. His voice is weak but getting better each day. Thank God the debilitating mucus has for the most part gone. He is no longer taking the Zofran for the nausea.

I remember John having a couple of sores on his tongue that seem to take a while to heal. John had zero appetite for a while after treatments ended.

Please don't take this personally as I know you are ANGRY and frustrated. As a caregiver who worries about recurrence and losing their husband to cancer I find it offensive when you make statements that your quality of life is zero. A lot of us have lost friends over the years to this cancer and I'm sure those people would trade places with you in a minute just to be here.

Lets face it we are all on borrowed time - cancer or no cancer and all we can do is deal with the hand we are dealt and make the most of each day.

Wanda- I am sorry. Believe me when I say that I would NEVER wish this upon anyone - having cancer OR watching someone you love with all of your heart go thru it. I don't know if you read my introduction, but I've been where you are too. Too many times in too short a time! I am angry at cancer.
And I am angry at myself. After all, I am ALIVE. And so many others have things much worse than me. And I have a support system to envy and some people have no one. I am aware of how lucky I am and all that I have to live for. Hence the anger. I'm angry at myself for being angry!!
I'm not looking for pity - YUCK!! I KNOW that only I can make this better. And I will. But I still struggle every day with a slough of emotions, not to mention the physical pain I'm in daily, and depression and anger, unfortunately, is where I find myself.
If we can't be brutally honest on this Forum, then I think we're wasting a great resource. We all need encouragement. But some of us also need honesty. It has made such a difference already for me to read about others going thru exactly what I am. It's made me be a little easier on myself - those feeling of 'why am I not well yet?' and 'what am I not doing that I should be?' -questions that leave me feeling weak and angry at myself.
I feel that Jon is right where I've been and still struggle not to go. And, like I want others to do for me, I only want to let him know that I feel his pain and am here to share honestly with him. And hopefully help him cope. I wish I would've found this site a year ago.
Respectfully,
Wendy

Hi Wendy. My reply was to Jon who has asked many of the same questions over and over and we have all replied to him over and over with the same responses.

You, me, everyone is allowed to be angry. I am pretty stressed and angry waiting for the results of my husband's biopsy from last Tuesday. I was mainly responding to Jon saying he has zero quality of life. That is very offensive to those on the boards who have severe physical deformaties and limitations due to this cancer but always offer their support and information to all on these boards. I will respond no more. Have a good day - none of us are guaranteed our next breath.

[quote=slim]Hi Wendy. My reply was to Jon who has asked many of the same questions over and over and we have all replied to him over and over with the same responses.

You, me, everyone is allowed to be angry. I am pretty stressed and angry waiting for the results of my husband's biopsy from last Tuesday. I was mainly responding to Jon saying he has zero quality of life. That is very offensive to those on the boards who have severe physical deformaties and limitations due to this cancer but always offer their support and information to all on these boards. I will respond no more. Have a good day - none of us are guaranteed our next breath.[/quote]
My name is John and if my questions had been answered I wouldn't post different topics. Please don't make this a negative place. I'm entitled to judge my quality of life. Support is what I need, not criticism or complaints about what I post and who I receive answers from. This is a SUPPORT group of sorts. Support is the goal

[quote=slim]Hi Wendy. My reply was to Jon who has asked many of the same questions over and over and we have all replied to him over and over with the same responses.

You, me, everyone is allowed to be angry. I am pretty stressed and angry waiting for the results of my husband's biopsy from last Tuesday. I was mainly responding to Jon saying he has zero quality of life. That is very offensive to those on the boards who have severe physical deformaties and limitations due to this cancer but always offer their support and information to all on these boards. I will respond no more. Have a good day - none of us are guaranteed our next breath. [/quote]
Thank you Wendy. I think slim needs to understand why we're here and that if I felt I was recieving the answers I saught I would not post different topics. I appreciate your support.

Lets all remember why we are here, to help sick people with correct medical info, advice and support. Thats what this forum is for and when emotions run high things can be easily misinterpreted since its being read instead of a face to face discussion. I am speaking up as an admin I am reading some tension expressed in this thread.

That said, all too often newer members do not understand the history of long time members. We have watched far too many good people suffer and die while struggling to prolong the inevitable. There are many here who would do anything to be able to sit down and eat a real meal as that is never going to be an option. Others are never able to speak again due to losing their voice box and larynx and must live a life of silence. Yet others here are permanently disfigured yet they do not hide inside the house. To another member who lost their spouse, these problems seem minor as they still have their loved ones with them. Everyone is different and has their own set of hardships which when compared to another member it may seem trivial but can be devastating to that individual. Compassion is not always easily given towards others when facing your own major life threatening problems but is always a good thing to receive. When reading posts dont forget to not read so much into things as trying to interpret the writers tone or inflection.

I can understand how the zero quality of life could have been considered offensive. I can also understand why questions are asked more than once. While there are over 8000 members of this forum, its mainly the same individuals who continue to always give back year after year. Many topics have been heard over and over. There are very good search functions on both the forum and main OCF pages which will yield years of info that could help to satisfy even the most curious who seek more in depth answers.

Lets show all each other some courtesy and not jump to negative conclusions over a couple posts. Please, no more posts which are not civil or this thread will be locked. Remember, we are all in this together!

Well I won't let one bad apple or experience ruin it for me. This is the only negative non-supportive answer I've had.
If carefully read, of read at all really, I don't ask the same exact questions.

My first boss said something to me that has always stuck with me. She said "everybody's has a Meter and everybody's meter is on high. For someone it might be they discountinued their shade of lip stick, for others it might be they missed their morning cup of coffee, and for others it could be they've been diagnosed with a terminal illness. But no one has the right to judge anyone else's meter"

I feel horrible that one of the first communications I've had here has gone south some how. I apologize to anyone I offended. That was not my intent.
My intent, in a nutshell, was to let John know that he could count on me to be honest. And I felt I could possibly help him as I've been right where he is and I got the feeling he really wanted straight answers. His referral to the quality of his life was honest. And I hurt for him because I've felt that way.

I really did have good intentions.

Christine,
You are very wise and you certainly hit the nail on the head. Jon, this is still relatively new to you and you are young, so it is no wonder that you are impatient. Everyone's situation is different, and we all have negative feelings from time to time. I understand Slim's feelings as well. This is such a horrible disease, and most of us had no clue what was involved until we, or a loved one got it. Remember, we are all here to support each other. There are days that I feel that the quality of my life sucks, too. But I just keep on keepin' on; that's all that any of us can do. Hang in there.

John,

Some of the answers you are seeking nobody here, nor anywhere will be able to answer for you, as in the timeline of when you will be able to eat this or that, even "if" as is often the case with many other survivors. You're a month out and can't eat a piece of pizza...that news will not surprise your medical team nor anyone who's had any contact with this disease and the treatment for it. Give it time and be patient, I understand that being from NY that may be hard for you, especially when it comes to eating pizza.

Now as far as this being a "support" group, you are very correct in that fact that it is and be assured that OCF is the best anywhere when it comes to getting the correct information from people who've been there and done that. This network of survivors and caregivers that continue to plug in year after year are an amazing wealth of knowledge, experience, and compassion. Sometimes support is tough love too, and we'll give that when called upon.

I remember when I was a year out of treatment and tried to go to a restaurant for the first time, this when I was still able to eat solid foods, an ability I've since lost. I was made to feel very uncomfortable by just about everyone in the place as I was severely disfigured from my experience, and was being stared at and having comments made by rude, disrespectful people when I was just trying to eat after a HBO session. I didn't think I was ever going to go out in public again after that and came on these boards for support and to share my experience of just trying to eat a soft cinnamon roll with loads of milk.

I was very upset obviously when EZJim posted something I'll never forget and will always thank him for as he was an example of someone who had/and has since been through more than I could even imagine yet still looks at life with an attitude I hope to achieve one day. He told me that if he could just eat solid foods he wouldn't care who looked at him, in fact he would probably have his meal paid for several times over if people just watched him try to eat anything. After that I understood that someone else not only understood what I was dealing with, but had a tougher path then I, yet chose to walk it with a different outlook. That support Jim offered me that day changed the way I looked at life and I think of him often now that I've lost the ability to eat solids myself. I'll always cherish that wisdom and thank Jim for helping me be the man I am now, along with the others on these forums, a few of whom have responded on this post of yours.

My advice to you John would be to start to work with a Speech and Language Pathologist as soon as you can for any swallowing and eating difficulties to preserve as much function as you can. The taste comes back eventually even though nobody will be able to tell you exactly when.

[quote=EricS]John,

Some of the answers you are seeking nobody here, nor anywhere will be able to answer for you, as in the timeline of when you will be able to eat this or that, even "if" as is often the case with many other survivors. You're a month out and can't eat a piece of pizza...that news will not surprise your medical team nor anyone who's had any contact with this disease and the treatment for it. Give it time and be patient, I understand that being from NY that may be hard for you, especially when it comes to eating pizza.

Now as far as this being a "support" group, you are very correct in that fact that it is and be assured that OCF is the best anywhere when it comes to getting the correct information from people who've been there and done that. This network of survivors and caregivers that continue to plug in year after year are an amazing wealth of knowledge, experience, and compassion. Sometimes support is tough love too, and we'll give that when called upon.

I remember when I was a year out of treatment and tried to go to a restaurant for the first time, this when I was still able to eat solid foods, an ability I've since lost. I was made to feel very uncomfortable by just about everyone in the place as I was severely disfigured from my experience, and was being stared at and having comments made by rude, disrespectful people when I was just trying to eat after a HBO session. I didn't think I was ever going to go out in public again after that and came on these boards for support and to share my experience of just trying to eat a soft cinnamon roll with loads of milk.

I was very upset obviously when EZJim posted something I'll never forget and will always thank him for as he was an example of someone who had/and has since been through more than I could even imagine yet still looks at life with an attitude I hope to achieve one day. He told me that if he could just eat solid foods he wouldn't care who looked at him, in fact he would probably have his meal paid for several times over if people just watched him try to eat anything. After that I understood that someone else not only understood what I was dealing with, but had a tougher path then I, yet chose to walk it with a different outlook. That support Jim offered me that day changed the way I looked at life and I think of him often now that I've lost the ability to eat solids myself. I'll always cherish that wisdom and thank Jim for helping me be the man I am now, along with the others on these forums, a few of whom have responded on this post of yours.

My advice to you John would be to start to work with a Speech and Language Pathologist as soon as you can for any swallowing and eating difficulties to preserve as much function as you can. The taste comes back eventually even though nobody will be able to tell you exactly when. [/quote]
As I've said before I don't need a speech or swallowing therapist. As I've said I can speak fine when all the salvia is cleared out and my swallowing has never been an issue. Thank you for taking the time to reach out to me. But I'd truly appreciate it if I didn't have to keep responding to people's replies that spin any users negativity directed at someone else as ok or justified. Some days I feel like my quality of life is zero. Offended by that? Move on to another post. Sometimes it takes asking a question in different ways to get the right answer. Don't like how I post? Don't respond to my topics instead of trying to seek them out. I DO NOT have time, the patience, or inclination to deal with ANY negativity outside of what is going in my head, in my body, and in my life and anybody who thinks that anyone on this forum SUPPORT group should have to for ANY reason should keep to their own posts as well.
The last thing I want to do or have the energy for is to defend myself or feelings or cause drama and the poster who thoughtless ignited this flame should feel that way too


Now- can we all just move on and get back to the great support and information system I've been seeing or do I need to leave this forum because everytime I come on here someone else is going to try to rationalize someone else's misdirected and inappropriate negativity? I'd like to go back to looking forward to reading replies, not cringing when I get an email notification. If this can't be accomplished can an admin or mod erase or close the topic? Because if it doesn't stop this entire thread is a useless waste of time.

This thread is now locked, no more responses will be allowed to be posted.


I tried to tactfully neutralize this situation and requested everyone to move on. This was NOT optional or up for discussion! There is NO reason for anyone to become upset or angry over anything that has been written. Expecting members to behave in a civil manner is not too much to ask for, its part of the rules we all agreed to when we signed up. I do NOT want to see anymore posts relating to this thread or any post with even a hint of attitude. OCF is to help sick people and their caregivers. The admin of this forum work very hard to maintain the integrity of this site. As a volunteer, I spend a minimum of 3 hours per day here reading every single post and making edits and corrections where necessary. Im not asking for any appreciation or even a thank you but I do expect respect for not only myself but for every other admin on this site.

I will leave the above post visible for a couple days then it will be deleted. In my opinion, it is not very nice to lash out at an admin for attempting to offer support. I do NOT want to see any more posts of this nature. Of course I am not saying its not ok to vent, we all do it and the members are here to listen. Lets remember not to direct things at someone who was reaching out to help. We all must show respect towards other members and admin. Everyone is an individual who has their own good and bad qualities, we all have something to offer others of this forum. We are NOT each others enemies, everyone is in this together. Lets all get along!!!