Wonder if I'm that weak or can others share similar stories
Comments
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Ha!
No you're not weak, you have CANCER! We all have different physical aspects (genetics etc)and a multitude of different treatments that react on an individual basis. I am 53 and when I was younger, a professional athlete before becoming a professional soldier with two bronze stars a the base of my jump wings. Nothing in my life ever came even close to the pain, exhaustion and mental taxation as this cancer has afforded me.
I am now three months out of Chemoradiation and facing doing at least part of it all over again. Unfortunately, a small portion of everything I eat still goes to my lungs and my mouth still develops blisters whenever I eat anything that has most any spice or pepper even in the smallest amounts. I have lost over 40 lbs and am not gaining weight and in addition the act of taking out the trash might as well be running a marathon because my daily allotment of energy is spent.
Don't sell yourself short. You're only weak if you let it break you.0 -
Hi Stevenson
As you know the side effects are different for everyone and the time it takes to heal because the radiation is still going on in side of you for months after the treatment stops. But you are at a spot now where things should start to get better, just hang in there a little longer. I was 47 when I did my first treatment and did it with out a PEG, but like you it was very hard on me. About two months out things really started to get better and taste started to come back little by little, Oh the blister I had come and go for almost two years, but nothing like when in treatment.
Hope this helps my friend
Hondo0 -
It will get Better
I know it is hard, but it will get better. It may not get to where you were pre diagnosis. 28 was the magic number for me, they called the ulcers and I said why, doc said because they are the size of quarter. I had 28 in my mouth, they hurt like hell. I too lived on chicken noodle soup for weeks and most of that time it was noodle less. That was 9 weeks post treatment, I remember that well as I had my surgery at 10 weeks. Surgery did not help either as the eating was not easier, but at least the surgery pains took over for the mouth pains for a short bit. It was 3 months later that other food was easier.
I can not say it is the pre treatment norm, hell I can not taste... but i can smell. I have added weight, gray hair and slowed way down. That was almost 16 years ago.
It will get better, give it some time. Prayers for you and your wife, wisdom, strength and understanding.
johnvg0 -
Wimp? . . ..riiiiiiight
No one who survives cancer is a wimp.
I do hope Doug comments (busy lately) as he remembers the pain much better than I do. He had mouth sores pop up after treatment that were really bad - he took to putting straight lidocaine on one that was really deep (sort of where the tongue meets the jaw). It did heal, but eating was very hard for a while. That can be frustrating, especially if you are trying to gain back weight lost or get off the PEG.
Hang in there.0 -
You are not a weak whimp!
Honestly, I was so unprepared for what this cancer thing was going to do to my body. I just never expected it to hurt so much, and be so bad. I never expected to be left with so many side effects still, at 2.5 years out of rads.
I had something with tomato and poblano pepper last night. I have a blister in my mouth today. I should know better, but every once in a while, I still try, and eat stuff that burns, stings, hurts or other wise cannot swallow.
It's NOT in your head. Good grief, I HATE it when people tell you stuff like that. My step mom was trying to tell me that after rads, when I could not swallow, that it was probably just stress, and I was over thinking it, that it was just in my head, that I needed to relax, and then I could swallow. HUH? At that point, I had not eaten any food in 4 months. Trust me, if I could have swallowed and eaten I would have, since just looking at a KFC or Pizza Hut commercial made me cry with hunger and frustration. After the swallow study, and they showed that I had radiation damage, and a stricture, I at least felt vindicated that I had actual physical proof. That I was just not being a cry baby. Which honestly, they really should have warned me about the swaloowing thing, and that I had a pretty good chance of having swallowing problems after treatment, given my history with Fanconi Anemia and having had a dilation prior to even getting cancer.
The mouth sores. You would not even believe the bloody mess that was my mouth. I had blisters every where. The roof of my mouth was one big blister, and one day, on the way home from rads, the roof of my mouth came off in a sheet. I was in so much pain that I wasn't sure what was happening. Step mom had to pull the car over, wasn't pretty.
Some people do not react as badly, and their side effects are not as severe. I pray every day that others who have to walk this road, have an easier time than I did. Cause lemme tell you, it sucked.
I had never taken anything stronger than an ibuprofen prior to this mess. Even when I had a biopsy on my tongue, I did not take narcotics. I am not a whimp, and I remember being on all that fentanyl and being in more pain than I could hardly stand.
Alll, I can say is, for anyone who has not been through it, you could never understand. You are not a whimp, and it's not in your head. I get it hon, I really do.
~sweets0 -
Thank you all...sweetblood22 said:You are not a weak whimp!
Honestly, I was so unprepared for what this cancer thing was going to do to my body. I just never expected it to hurt so much, and be so bad. I never expected to be left with so many side effects still, at 2.5 years out of rads.
I had something with tomato and poblano pepper last night. I have a blister in my mouth today. I should know better, but every once in a while, I still try, and eat stuff that burns, stings, hurts or other wise cannot swallow.
It's NOT in your head. Good grief, I HATE it when people tell you stuff like that. My step mom was trying to tell me that after rads, when I could not swallow, that it was probably just stress, and I was over thinking it, that it was just in my head, that I needed to relax, and then I could swallow. HUH? At that point, I had not eaten any food in 4 months. Trust me, if I could have swallowed and eaten I would have, since just looking at a KFC or Pizza Hut commercial made me cry with hunger and frustration. After the swallow study, and they showed that I had radiation damage, and a stricture, I at least felt vindicated that I had actual physical proof. That I was just not being a cry baby. Which honestly, they really should have warned me about the swaloowing thing, and that I had a pretty good chance of having swallowing problems after treatment, given my history with Fanconi Anemia and having had a dilation prior to even getting cancer.
The mouth sores. You would not even believe the bloody mess that was my mouth. I had blisters every where. The roof of my mouth was one big blister, and one day, on the way home from rads, the roof of my mouth came off in a sheet. I was in so much pain that I wasn't sure what was happening. Step mom had to pull the car over, wasn't pretty.
Some people do not react as badly, and their side effects are not as severe. I pray every day that others who have to walk this road, have an easier time than I did. Cause lemme tell you, it sucked.
I had never taken anything stronger than an ibuprofen prior to this mess. Even when I had a biopsy on my tongue, I did not take narcotics. I am not a whimp, and I remember being on all that fentanyl and being in more pain than I could hardly stand.
Alll, I can say is, for anyone who has not been through it, you could never understand. You are not a whimp, and it's not in your head. I get it hon, I really do.
~sweets
My wife and I sat and read this together as tears stream down our face all she could say was how lucky I am to have found this site and how amazing these people are that respond and wonder if they know how much it means and how much it helps. I will fight the fight as I have a wife of 32 years that won't put up with negative and a GOD that walks with us through all this. Again thank you......still reading and more encouraged.....0 -
Out of Control
You have no control, so whether you are a whimp or not is of little consequence, LOL...
It's purely physical and genetics for the most part. You'd have to have some serious mind over matter or pain tolerance to control how you are reacting.
I had no PEG, and didn't have mouth sores, but it still hurt to swallow. Especially the last three weeks of rads, and the next four post rads. But never to the point I couldn't deal with it. For whatever reason, I could tolerate it...must be the Marine Corps Training, LOL. Just teasing, it was as described above...genetics, tolerence, low pain threshold, not sure.
So I used the lydocaine mixtures, drank a lot of water, Ensure Plus and slid down a few sliced peaches in light syrup just to make sure the muscles were working a little any ways. Chased that with a ground up Percocet and a warm shower, then repeated in a few hours.
You'll get there...when your body tells you so...LOL.
It's a very slow process at times.
Best,
John0 -
Weak? Heck no,your a survivor
Weak? Heck no, your a cancer survivor. When i read your post, the thing that struck me was that i could have written it myself a few months ago. The blisters will lessen with time, i promise. Hang in there. I lived on noodle soup also. it was the only thing that would stay down and didn't cause blisters. I had a peg but couldn't use it without throwing up.
I know its easy to get disheartened, but keep going forward , it will be worth it.
Also remember, those folks that were able to keep eating the whole time, may not have had the rads aimed in the exact same places with the same intensities that you got. It just may be that their treatment left them in a better position to be able to eat better. I guess what i mean is, don't judge your progress by someone elses yardstick. Best wishes to you, Tony0 -
Thought I'd add my best wishesMstevenson said:Thank you all...
My wife and I sat and read this together as tears stream down our face all she could say was how lucky I am to have found this site and how amazing these people are that respond and wonder if they know how much it means and how much it helps. I will fight the fight as I have a wife of 32 years that won't put up with negative and a GOD that walks with us through all this. Again thank you......still reading and more encouraged.....
This will pass. The body heals forever. There's no way you will continue to have these blisters indefinitely. BTW, you have gone back to your treatment team for symptomatic relief of this as often as you needed to, and gotten good responses from them, I hope?
Keep the faith0 -
You are not weak at all.
You are not weak at all. It's so hard dealing with all the pain that cancer sends our way every day so I completely get why you say that. I give myself 5 minutes every day to just have a melt down and let myself mourn for all of it. That's all I get. And believe me I make the most of that 5 minutes. Stay strong and heal.0 -
strong
Every single one of you who have battled head and neck cancer is anything but weak. Yes, some weak moments but, in the end you are the strongest of them all. This has to be one of the toughest treatments there is for any type cancer. (IMHO)
UGH...Mouth sores. Only good thing about them is that they eventually go away. Lots of great suggestions on this site. One more...Ulcer Ease. It's recommended at MD Anderson and it appealed to my husband more than some of the other mouth rinses. You might want to add it to your arsenal.
Best wishes,
Robin0 -
Cooking
Mstevenson,
Weak? H*LL NO, your not weak, you went thru the treatments didn't you? When I went thru the treatments, there were several people that didn't return for the rest of their treatments.
"Cooking"- we all go thru a period which we call "Cooking" the treatments are acculumative and it takes some time for the radiation and chemo to leave our bodies and it is after the last day of Treatments that we feel the full affect of the treatments for several weeks which may last as long as 4-8 weeks according to my Radiation Oncologist. So, you basically are roughly still about a week away from the beginning of your road to recovery. As mentioned before by many, we all recover at a different rate. Some people bounce back fairly quick, others take a bit longer and hopefully, you fall in the middle.
Measure your recovery not in days, but by weeks, it is a little slower for us to recover mainly because we do so much during the day with our head and neck, constant use and only rest and recover when we sleep. We forget that part sometimes as we get so involved in trying to get back to normal. If the blisters are bothering you, try the Baking soda and salt solution to rinse and gargle if you haven't already done so. It really worked for me and I swear by it. The Nurses told me to do it 3 times a day, but I tend to over do things and rinsed and gargled as often as every 30 minutes if I felt I needed to.
My Best to Both of You and Everyone Here0 -
Getting sore at all thisrobinleigh said:strong
Every single one of you who have battled head and neck cancer is anything but weak. Yes, some weak moments but, in the end you are the strongest of them all. This has to be one of the toughest treatments there is for any type cancer. (IMHO)
UGH...Mouth sores. Only good thing about them is that they eventually go away. Lots of great suggestions on this site. One more...Ulcer Ease. It's recommended at MD Anderson and it appealed to my husband more than some of the other mouth rinses. You might want to add it to your arsenal.
Best wishes,
Robin
I suppose I should have appended this to DrMary, (my wife’s) post but this is the latest one. The mouth sores from the radiation were general and widespread and made anything thicker than milk impossible for a while. I just checked our journal for confirmation, by the way. I used Magic Mouthwash generally and also topically with a Q-Tip when it was reduced enough to go after specific ones. I would do this just as everyone was sitting down for dinner (in the dining room) and it would last long enough for me to get something down. This went on for a few weeks. Liquid (milkshakes) and near-liquid nutrition (thin soups) were the only way to get in calories and nutrients then.
Short story here: Every day on our way back from tanning in the last month my job was to get down a small (8 oz) bottle of Boost Plus before we got home. (My wife was driving me by then because I couldn’t function well enough for this.) The trip home was about 45 minutes, largely through beautiful Rock Creek Park in the fall. It was such hard work to try to get this down because my body was just refusing to do what would be so painful to its throat and stomach. Many was the day when I would manage a small sip or two by will power alone along the way but found myself sitting in the driveway with the bottle in my hand having been unable to drink it. But I was also unable to go into the house without finishing it and so would eventually force it down, ounce by ounce. And then I could go in and collapse. What small triumphs these were!
The sores were greatly aggravated also by being in the way on the way back up. I vomited for a few weeks and was in terrible pain from that but also the sores got a dose of the stomach acid on the way by and found that a few minutes after I finished, if I rinsed out and then used the MM it quieted this pain down as well enough so that I could just lay down and be wiped out.
The second long episode with the sores was more frustrating because they weren’t obvious. They cropped up after the neck dissection which seems odd since the dissection was all from the outside in, but apparently while propping me open for breathing tubes and whatever else they did (I think they changed the spark plugs, too) they also sort of ripped open the very back of where the tongue joins. Or maybe it had a different cause but this was the timing anyway. Even the ENT guy couldn’t find it but finally the rad onc did and was at least able to say that this was a bad sore that was just going to have to heal from the inside out, sort of filling in from below. It took a couple of months and did require sticking a swab of lidocaine right on it before eating or it would be just too sore to chew even the softest of food.
And, yes, the doctors say that “our” treatment is the worst because it strikes at the most basic of functions – chewing and swallowing – and because it is incredibly painful and debilitating. On the other hand, we have a great success rate and the long-term prognosis is very good. I’ll take a couple of months of he#% and more month of bad times for those odds. In fact, I did and do every day.
You are not a wimp. You are, in fact, proving yourself stronger than you ever thought you were. Adelante. Doug0 -
I know your all right !!MarineE5 said:Cooking
Mstevenson,
Weak? H*LL NO, your not weak, you went thru the treatments didn't you? When I went thru the treatments, there were several people that didn't return for the rest of their treatments.
"Cooking"- we all go thru a period which we call "Cooking" the treatments are acculumative and it takes some time for the radiation and chemo to leave our bodies and it is after the last day of Treatments that we feel the full affect of the treatments for several weeks which may last as long as 4-8 weeks according to my Radiation Oncologist. So, you basically are roughly still about a week away from the beginning of your road to recovery. As mentioned before by many, we all recover at a different rate. Some people bounce back fairly quick, others take a bit longer and hopefully, you fall in the middle.
Measure your recovery not in days, but by weeks, it is a little slower for us to recover mainly because we do so much during the day with our head and neck, constant use and only rest and recover when we sleep. We forget that part sometimes as we get so involved in trying to get back to normal. If the blisters are bothering you, try the Baking soda and salt solution to rinse and gargle if you haven't already done so. It really worked for me and I swear by it. The Nurses told me to do it 3 times a day, but I tend to over do things and rinsed and gargled as often as every 30 minutes if I felt I needed to.
My Best to Both of You and Everyone Here
I do live by the salt and soda rinse it for me also has been a huge comfort. I was not prepared for this long a torture after treatment was over. thanks to you all I am feeling better about the fact that I am and have improved in the last few weeks and will embrace the little things instead of wishing for the way it was. As I read so often better days ahead and I THANK YOU ALL for taking your time to respond I really needed your help !!!0
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