treatment day 8 - taste beginning to leave

I remember well
My big gripe was I had Throat cancer, and the Phlem thing going on, I didn't quite realize what they said when they keep saying the weeks of treatment would get worst. I remember the room always cold, having to removing my shirt, and then being strapped. The times I got the phlem problem, and started to choke, or had a big wade build up, they would have to stop the session and let me up, but the group I had where aware of this and said it wasn't uncommon. During the end of my 7 weeks, my neck was cooked, red, open sores, they gave me a new drug on the market for my sores in my mouth and on my tongue, with out insurance, it cost over $500.00, and comes in a cardboard suitcase, the 2 vials are mixed, swished and spit out, but what a great prouduct, and the sores healed quickly, CAPHOSOL, was the name, it is new and was great!!! ask for it. my neck is finally healed and looks great, feels like babys skin, the taste buds are coming back, I struggle in the night and morning with my sore throat still, thats what the pains meds are for, I take them, to get me threw the day, I am happy I gained 10-lbs, 170, from 160. i ate my first piece of chicken and fish this week. Everyone will go threw cancer different, I remember freezing and then having heat waves as you do, I always seem cold still. I still await the return of my voice..it seems to get a little stronger, but dies out after the day progresses, take care, it does get better, I hope we never have to return to this disease again, Once was enough for me..Good Luck. Dennis

you
Hi, Mick. My nose would always itch me, not sure if I caused it thinking it would happen b/c i couldn't scratch it or what. YOU ARE SO RIGHT, THIS PATH IS DEFINITELY A LONELY ONE, that is why I don't think I would be recovering as well without this site. People here know what you mean when you say you can't taste something or you spent the night coughing. Our family and friends, like you said, mean well, but they honestly don't have a clue about this, and I pray they never do. Sorry to hear you're losing taste already, it only gets worse from there as far as taste goes. I definitely undersatnd about the mask too. I have 2 treatments when I had to make the girls take it off me and wait a few minutes. After those 2 visits, I started taking a nerve pill to calm my nerves. I wish you the best thru the rest of your treatments and when you feel alone, come to this group of family/friends and we will listen to you and perhaps help you also. God bless you, Mick.

Debbie

debbiejeanne said:

you
Hi, Mick. My nose would always itch me, not sure if I caused it thinking it would happen b/c i couldn't scratch it or what. YOU ARE SO RIGHT, THIS PATH IS DEFINITELY A LONELY ONE, that is why I don't think I would be recovering as well without this site. People here know what you mean when you say you can't taste something or you spent the night coughing. Our family and friends, like you said, mean well, but they honestly don't have a clue about this, and I pray they never do. Sorry to hear you're losing taste already, it only gets worse from there as far as taste goes. I definitely undersatnd about the mask too. I have 2 treatments when I had to make the girls take it off me and wait a few minutes. After those 2 visits, I started taking a nerve pill to calm my nerves. I wish you the best thru the rest of your treatments and when you feel alone, come to this group of family/friends and we will listen to you and perhaps help you also. God bless you, Mick.

Debbie

Steve and Mick

I'll be thinking of you 2 while you travel this road. Understand how you feel. Although we are surrounded with caring people, we are alone as we are the ones that feel the effects of the treatments. The discomfort, which in turn makes us a bit edgey and inpatient. We have to remember that we are Loved and they are trying to make it as easy as possible for us. Keep that sense of humor.

Mick, you are doing better than I did with the taste part. I lost my taste around treatment number 4. Food tasted like cardboard and liquids tasted like aluminum. I relied on the smell to get it past my mouth, not the taste. Eventually, I had to do most of my nutrition thru the PEG Tube and alittle thru the mouth. Remember as hard as it might be, try to swallow at least some water orally so you don't loose the swallow motion.

My Best to Both of you Gents and Everyone Here

MarineE5 said:

Steve and Mick

I'll be thinking of you 2 while you travel this road. Understand how you feel. Although we are surrounded with caring people, we are alone as we are the ones that feel the effects of the treatments. The discomfort, which in turn makes us a bit edgey and inpatient. We have to remember that we are Loved and they are trying to make it as easy as possible for us. Keep that sense of humor.

Mick, you are doing better than I did with the taste part. I lost my taste around treatment number 4. Food tasted like cardboard and liquids tasted like aluminum. I relied on the smell to get it past my mouth, not the taste. Eventually, I had to do most of my nutrition thru the PEG Tube and alittle thru the mouth. Remember as hard as it might be, try to swallow at least some water orally so you don't loose the swallow motion.

My Best to Both of you Gents and Everyone Here

Long and winding
Hey MarineE5,

Hope everything finds you well today. Thanks for writing, remember you are one of my heroes.
Thanks,
Steve

micktissue said:

What I ate today so far
Scrambled eggs and toast - painful, but no PEG so down it goes
Banana Berry Smoothie from Jambajuice - cold is good so far
Leftover pepperoni pizza - painful, but no PEG so down it goes
Potato salad - my all time favorite comfort food tastes like nothing still going down
Veggie barley soup - my wife makes amazing soup, but this tastes like nothing still going down
2 ginger cookies from Trader Joes - the most delicious thing I've had since losing some taste - wonderful
A lot of apple juice - I can taste this and it seems to give taste to the foods with little taste. It makes the potato salad taste better - weird.

I feel pretty fortunate that I can eat like this. Basically we're just trying to keep the weight up until such time I can only manage liquids. It's a marathon.

Best,

Mick

The Rads
Mick- sounds like you are doing reasonably well. By your stage, my friend, I had "scalding" of my tongue, and the morphine was starting to get real popular with me!

The mask time is a struggle we all have. As I've stated before, I found that if I held my teeth together in an overbite position, breathing thru my mouth and nose, I had far-less trouble. And, I did do 1/2-tab of Xanax about a half-hour before the start of every rad session. Was a big struggle at first, but it did get a lot easier for me. Hope it does for you, too.

As I didn't take-in anything but water and ice for the two worst months, not sure what it'll taste like to you, but I must remind you about the Ensure and Boost. You gotta keep them calories coming-in, Mick. Such gives your body the ammo to best fight the fight.

Glad to hear you are doing okay.

kcass

Hondo said:

Mick
As you know the ride starts to get bumpy from hereon out. The cranky short tempered is just a side affect that will go away, I ran all my children away the first time and none of our friends would visit because I was so bad. I have no idea why the wife stayed because I was just not easy to get along with, but I love her so much more now because she was there when I needed her most, she never gave up.

People care and for the most part don’t know what to say when someone is going through treatment so they are always asking, how you are doing. Sometimes I just would wish they would shut up, because what I needed was someone to listen to me or just hold me and say nothing.

I love the part about the itch, I would use my mind to scratch it and after a while it would really work, amazing how powerful the mind is when we focus it on something. I had the hot flashes all through treatment and for sometime after.

Hang in there and keep your focus on the finish line up ahead my friend

Hi Mick
It ok to be cranky. I am not even near the place you are and I am cranky already!
I know family and friends want to be helpful. I have had my sister tell me that it is nothing, that I just worry too much. I have had a nurse friend tell me that I shouldnt even believe that I have cancer.. that doctors can be wrong, I have heard so much, and I havent even had surgery yet.
I hope I can be as stong as you and the rest of you on here... but I know you all will help me through it.
Mary

Hondo said:

Mick
As you know the ride starts to get bumpy from hereon out. The cranky short tempered is just a side affect that will go away, I ran all my children away the first time and none of our friends would visit because I was so bad. I have no idea why the wife stayed because I was just not easy to get along with, but I love her so much more now because she was there when I needed her most, she never gave up.

People care and for the most part don’t know what to say when someone is going through treatment so they are always asking, how you are doing. Sometimes I just would wish they would shut up, because what I needed was someone to listen to me or just hold me and say nothing.

I love the part about the itch, I would use my mind to scratch it and after a while it would really work, amazing how powerful the mind is when we focus it on something. I had the hot flashes all through treatment and for sometime after.

Hang in there and keep your focus on the finish line up ahead my friend

sorry it's getting tough
i lost my taste within a few days. i went for a couple of days in there that i was eating like crazy because i could not taste and nothing was satisfying my cravings. eat while you can, that's good that you gained some weight. this is when it is going to start to get hard. i would be so thankful for friday, then on the way in on monday i would cry.

i am living with my gram, and she is pretty senile. you want to talk about someone driving you nuts through treatment. at least your family is sane. mine cannot remember that i have been battling cancer. i would be so miserable cause i was in so much pain, and i could not eat, and she would be asking me if i wanted orange juice and a bagel.

i finally started feeding myself with my peg in private because every single day she would ask me what i was doing. i could hardly speak and she would insist on speaking to me, but then could not understand me. i just wanted her to leave me alone. i still hide in my room most of the time because she drives me nuts. i had to get a frige for my room, because the only thing i could get in me and eat for a while when i could not swallow and my throat was closed was ice cream. i was living on shakes. she would eat it. i would go in and have nothing to eat. she would then tell me she did not touch it, or she did not know she could not have it. she lies when she thinks she is in trouble. she complained and laughed to my parents that i yelled at her cause she ate my ice cream. yeah, real funny that i am 88lbs and you are insisting on eating the only thing i can swallow. i was not driving and the closest store is 12 miles from me. so, ya, i am mad when i go to frige and my food is gone.

when the techs would line me up, they would move my bra and blouse or dress and whatever i was wearing. they would never put stuff back right, and it would be bunched or twisted and bugging me the whole time till i could get off that table and fix myself. itches are bad, but half your boob caught in your bra is worse. lol. i was happy there was only one guy. i only hard him twice.

i had to have a 'blanket' during treatment, it was freezing in that room. my hot flashes did not kick in until after rads were done.

hang in there. i know how grumpy you feel. but really be greatful that you have family there to help you. it is really hard alone, even when you want to be alone.

GRAVEY said:

The temperature thing was an
The temperature thing was an issue with me Mick. I found that if I was up and moving, I didnt experience it as much, although I do think I was colder when I walked around. But when I would lay down, I could be naked or fully clothed, and I would be burning up. I would toss and turn in my bed to find the cool spot. I never sweat when I was burning up, it was kind of an internal temperature thing. But I could never get comfortable, showers were miserable because of the temperature changes between inside of the shower and outside. Luckily we have a fan than blows heat in my bathroom, so I would turn it on and let the outside of the shower warm up, and then get in the shower so that there wouldnt be a great temperature difference. This helped, but I still didnt enjoy showers, I just knew I had to take one because of necessity.
The temperature thing went away about 3 weeks after my last rad treatment.

Good luck Mick, and dont feel like your alone man, your friends and family may not know what your going through, but them asking you constantly if your okay or if there is something they can do is there way of showing that they care. And dont feel that your taking advantage of them by taking up their offers of help, you would do the same for them if this was happening to them.

GRAVEY

Temperature thing
Gravey
I was about the same way during my radiation also. I wore joggin suits just to stay warm and at night when trying to sleep would ask for extra blankets.
Mick
My throat started about my second week of radiation on the 3rd week my voice went and still having changes with it. Asked rad/onc why and he show me the endoscopr and one of my tumors was right next to vocal cords. Good luck and stay strong

know there is others out there that have been there
I thought we were the only ones out there with this crappy throat cancer . We got told in Dec.09 and just finished up Feb.26th/10 with 30 rad & 2 chemo w/cisplatiumn given. We have been thru hell. My husband has the same cold & hot flashes - why we say? No one will tell us why. We waited to long on getting the peg tube in and are having extreme problems with finding a formula that will not upset his stomach , and not come back up in the throat that makes extreme flem! We have had to get dehyrated several times now as he can not keep alot down due to a severe sensitive stomach. We have just been given a pump for contanst feeding due to lack of nutrition. But again untill we can find something he can tolerate we are not yet doing so well. We lost over 35 lbs that we had to get a 2nd mask made.They recalculated the treatments, seemed more intense as we got closer to the end. Yes you will lose your voice but only temporary. The burning from the radiation was not so bad as we thought - use the sav inside of the leaf of a aloe plant. We cut off a piece daily & rub it on. Our nausea was so bad we had to go with a patch that I found on the internet. Also we went with a pain patch. Constipation is horrible for us due to the amount of pain medicine given. Watch how much meds you take. Advanti has helped keep him calm so he doesn't cough his brains out. We are so thankfull to finally have a break from driving 45 minutes just to get to out cancer center. You will have good days and bad. Let yourself reach out and get to know others as it will help you form a bond. Trust me it will happen and you will be a different person for it. Yes we were scared and still are as we hope they got it, but it will be allmost a month before we can test to see were we are. So be brave, I am so glad this is out there so we also do not feel alone. I hope we also will get help with issues were having. Hang in there - remember also everyone does not know what to say or do as untill they & ourselves get use to hearing the word cancer, it is very hard to talk about. Some people act as if you have something catching, others don't know what to say, some say prayers for us, others make food, others offer help, some call and some stop by or send a card or call. Even though sometimes you think you have no one in your corner, you will find out they are all in different ways.