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treatment day 8 - taste beginning to leave

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

This is starting sooner than I expected, but of course not a total surprise. 8th treatment today and the sides of my tongue feel a bit numb and food is losing its flavor. I also notice I'm getting a bit cranky - short tempered, irritable, not very nice - especially when I am getting asked a barrage of questions like "how do you feel?" and "what can I do?" from very well meaning people (friends, family). This is quite the lonely road. I have no idea what to say to people when I'm asked these questions and I'm tried of giving the same report over and over.

This, I've realized, is a marathon, my first. And I see that my preparation for it has been when I have sucked it up in the past - school, work, life - just to get through a bad day. I am drawing on those experiences now and making good use of them. Tonight was a case in point.

I'm strapped to the table under the mask (not yet use to the claustrophobic feeling) focusing on my breath, counting the passes, counting with the music of my CD (Traveling Wilbury's tonight - "I'm so tired of being lonely . . ") when I get this intense itch on my right shin.

Now, if I move, I risk having to skip the treatment because I will get out of alignment. So I go right into the itch, feel every microscopic nerve cell screaming for attention, knowing there was no way I was going to jeopardize tonight's treatment for a little itch. There was a lot of power in that and in a practical kind of way very meditative. Maybe a little strange too.

Oh, another thing - chills and hot flashes. Anyone get those during rads? I start shivering (about 30 minutes after rads) and now boiling (about 3 hours later).

Best,

Mick

cwcad's picture
cwcad
Posts: 117
Joined: Nov 2009

It is good for you to speak of these feelings. Apparently, I remember very little of my treatments. I was talking to the brother that stayed with me the first week of treatments and I told him that I thought that I had participated in eveything that I wanted the first few weeks. My brother told me that I mostly slept. It must be the dreams that I am remembering.

dennis318's picture
dennis318
Posts: 349
Joined: Feb 2010

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

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hey Mick,

I am glad to see you even feel up to writing. Oh is there anything I can get you? Are you O.K? Are you hungry? how bout an ensure? All well meant from those I know love me the most but yes, now that you mention it, may I sew your lips together?. ARGH! The only way I get through it is to remind myself, JUST EXACTLY, what would I do without em? Doesn't help every time but does help.

As far as sucking it up, what other choice do we have man? I am in construction and have had to travel and be away from my kids and family for months. That is what I think of when the loneliness starts creeping in. Really glad I am not alone!!!

Sorry the mask bothers you Mick. I go for an amiphostine infusion about 1 hour before I got to rads. The amiphostine makes me feel strange don't know how to explain it. But I leave there and walk to my rad and take a little anxiety pill before I get there. Ahh the shelter of a mothers little helper. Clonazepam helps me through my day.

I have been listening to SADE'S new one, not my style but man does that woman relax me. Gonna surprise em next week I think with some Procul Harum Or Johnny Winter or something.They may refuse to play Winter, I don't know.

All the best Mick,
Steve

debbiejeanne's picture
debbiejeanne
Posts: 2224
Joined: Jan 2010

Steve, I'm so glad to c u have a great sense of humor going thru this. I laughed outloud when I read your post. I understand how the questions sometimes make you crazy and I believe you're looking at it the correct way, what would we do without them. Anyway, stay strong and hang in there, there is light at the end of the tunnel. Oh, yeah, is there anything I can do for you???.....lol.
God Bless,
Deb

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

May I sew your lips together? I can't stop laughing. Things are better today. I gained a bit of weight so that makes people happy. Throat is dry and everything tastes like paper today. I'm not getting the amifostine because they are sparing much of the left parotid and I still have enough saliva to eat. So what am I complaining about?

Best to everyone,

Mick

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hey Mick,

Do you think I should seek counsel after the lip remark or do you think I have finally found my center? I mean I could have just thought of some tape or something ya know?

Steve

debbiejeanne's picture
debbiejeanne
Posts: 2224
Joined: Jan 2010

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

MarineE5
Posts: 744
Joined: Dec 2005

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

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hey MarineE5,

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

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

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

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

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's picture
Hondo
Posts: 5608
Joined: Apr 2009

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

MaryRC's picture
MaryRC
Posts: 114
Joined: Feb 2010

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

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

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.

ratface's picture
ratface
Posts: 1231
Joined: Aug 2009

Hi Mick

Good Lord man you just may gain weight on this fabulous diet. Just BYB Mick. Eat everything in sight. Hey what happened to the sugar phobia? cookies? I ate to about week five and then even breathing caused pain on the right side. Cold and hot stuff will start to bother you. Careful with hot as it can cause immediate water blisters down the line. Also be careful with that cayene you like so much. Hang in there, rooting for you all the way!

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Hey Ratface. My days as a mid-level glutton ended today. I think it was Jim who described the throat pain as a "sore throat you've never had before". Mine feels like the skin is peeling away! My 9-year-old daughter was the one advocating for cookies, so you know when you're needing to gain weight you just gotta eat. The cayenne has been gone for a while - Drs orders!

The throat pain will mean more liquid meals. Fortunately I took Hondo's advice about frequent rinsing with salt/baking soda solution because swallowing is not hard and not a problem (yet?).

A rough road doesn't really describe it. Traffic accident is closer.

Best,

Mick

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

More like a trainwreck, Mick!

kcass

GRAVEY's picture
GRAVEY
Posts: 84
Joined: Jan 2010

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

Fire34
Posts: 350
Joined: Feb 2010

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

lfjeep
Posts: 2
Joined: Feb 2010

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.

dennis318's picture
dennis318
Posts: 349
Joined: Feb 2010

Well, Throat is sore and time to get the phlem up, this is becoming a regular thing, I go to the new oncolgist to have him take alook to see, what the radiation and chemo did.Be on 6th week on recoup from radiation next week, been able to get food down easier, but some foods seem to feel like it stretches my throat which hurts, the pain seems in the back, and not as much as it was in the throat where the tumor was,my ears are burning as well when swallowing don't know if this is good or bad. I know I have to work and talk daily, so I think this has caused a slower recovery, my voice has gotten better, but tires and harder to understand at the end of the day. The pain pills have helped alot to eat. Any related stories would be appreciated so iI feel I am on the right way to recovery, Thanks Dennis

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

Hi Dennis,

Sounds like you are on the right road, it's just a long slow one unfortunately. I have not experienced the burning ears sensation, but much of the rest I have and still do at times.

I'm about eight months post treatment and I still tend to get hoarse and dry after and during long conversations or days of a lot of talking.

Take the meds as needed and just hang in there, I believe that most of what you are encountering will subside significantly in another few weeks or months.

It seems most of my changes and improvements are measured more long term (weeks and months) versus days and weeks...

Take Care,
John

denistd's picture
denistd
Posts: 483
Joined: Apr 2009

What you got there Mick, looks like a fender. I still have my original 1963 fender precision bass, fender customized it for me to look like a telecaster. Also had one of the first bass amps made by Jim Marshall when he had a small guitar and amp shop in Soho, London. We all knew that Marshall amps would be popular, he designed all of his amps to complement Fenders, I moved here from England in 1974 and finally gave up playing in 1990. Denis

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Hi Denis. That's a made in Mexico Fender Telecaster I got new last October. I sold my 1986 '52 reissue Tele a few years ago and have missed that Tele sound since. Wow you were in London during a pretty amazing period for rock music over there. Did you gig?

denistd's picture
denistd
Posts: 483
Joined: Apr 2009

Sure did, had a couple of hits in England and Europe, did a lot of travelling throughout England and Europe from 62 onwards, had a great time. Did a lot of recording and session work for those bands that really could not play that well as well as for my own bands. Denis

bluesguy's picture
bluesguy
Posts: 1
Joined: Mar 2010

Hi I'm a newbie here. Just reading the stories and its bringing back some memories. I've been done with the radiation now for 3 1/2 weeks, and just had my first follow up appointment. The doctor said I was doing great so far.

I still have some side effects, minor ones, my mouth usually gets dry during my 2nd helping, but heck I overeat anyway. The food still tastes funny, but my mouth is no longer sore, my tongue is almost back to normal.

The good news is I can eat whatever I want. I love cajun and Mexican food. Last week I treated myself to some homemade shrimp creole.

My keys to the treatment I guess were to have a good sense of humor, good spirits, heck I live in Nebraska and was going through the treatments in the worst winter we've had in ages.
They beat me up pretty good. I had a tough time eating, drinking and even talking.
Just stay strong and optimistic. It will get better.

And to those musicians. I bought myself a resonator guitar, learning some Delta Blues. Music is great therapy.

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

Welcome to CSN, and glad to hear t you are a survivor, Take care and keep posting

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