Yep its me and I am in one lousy mood. I need to vent so here is my vent.
I HATE cancer!
I am SICK of liquid food!
I am TIRED of hearing everywhere I go "Where there is breath there is hope."
The skin is coming off my neck or the fat. Whatever those stringy gobs of white stuff are.They come off on the cloth I try and dab my neck off with after it gets some water on it in the shower.

I haven't had a really good nights sleep in a month even with medication. I was ready to move out of this THING they call an apartment complex in April but no I had to get sick as a dog and all my saved money went for doctors apts. and medication. My sugar goes up and down from 135 to 210. There is nothing I can do about it either. I feel like I have a gnat flying around in my throat and it makes me want to scream!

Its been so hot I am sure my electric bill will be half my check next month. My throat hurts and if I still had my house I would go out there and bust every dish in the house upside the shed and then lay down in the grass and cry myself to sleep.

There! I have said it!

I am so sorry that you are experiencing this. I truly can say I have been there. I pray that you will find comfort in God's word. Mary

Oh Barbara! Did that bring me back. How I hated liquid food! I couldn't stand Boost or Ensure. I prefered Carnation Instant Breakfast, Espresso flavor - but you can only get it in the multiple flavor packs )I threw out all of the strawberry). I also ate a lot of milkshakes. It was a LONG time until I enjoyed a milkshake again. The good news is the the skin on the neck is the fastest to heal. Hang in there - you'll have a new appreciation for patience when you are done (just like Job).

I was pretty pissed off too after it was over - it's healthy to vent your anger.

I dread getting that mask on. It hurts my neck now so bad I can't stand it! Yesterday they had me dab some 5% cortisone cream on it and I slid down the wall silently screaming. I swear it hurt so bad I couldn't scream out loud. Well I am never using that lousy stuff again!

I am glad my neck will be the first to heal. They say it may ulcerate by next week. You all better pray if it does I make it the last week. I have a high pain tolerance but this is a whole new ball game. I thought it was bad when I tore the cartlidge off my knee but at least after surgery it was better in a week. This seems to go on and on and on.

Okay. I am counting to 5 or maybe 10. I can do this I can. TG for this jelly thing I have on my neck. It keeps falling off though. It is hard to sleep with a scarf tied around your neck to keep it on. I want to wear it forever.

I love you guys.

What kind of pain meds r u taking? If u r still in pain ask if the dose can be increased. I know towards the end of treatment my mom was put on pain patches and then a liquid oxydose for breakthrough pain. I remember being told by several docs and nurses that there was no reason to be in pain when it can be controlled. How many more treatments do u have left?

I wish we lived a little closer then maybe i could help u out some. At least this hot humid weather we had broke. It was actually kinda chilly this morning. Hope today u r feeling a little better.

Gary,

I have the same "liquid food" memories as you -- I couldn't deal with Ensure, but lived on Carnation Instant Breakfast (other than strawberry)!

Barb,

The "silent screaming" thing also took me back years. There were times toward the end of radiation when I wanted to do a blood-curdling scream at the radiation center, but since I wasn't hearing them from anyone else there, I held it in. I also held it in at work, for obvious reasons. But when I got home, I had to let it out - it was part pain, part frustration. Every time I told my RO I couldn't take any more, he told me I could and I needed to.

I pray that you'll have the strength it takes to get through this last part of your treatment -- I know it's tough, but we're here for you.

Cathy

I am back once again. As soon as I removed the jelly wrap my neck dried up and got stiff. One laid me on the table while the other one held my head straight. Infortunately the ulcer has begun to develop. Its about the size of a half dollar now. I hope it does not get to big. What I hate is the mask goes right on top of it. Ugh.

I only have the pain when the gel thing is off. They gave me 8 more packs today. I cut them in half and each piece lasts 2 days so that means I have 32 days worth TG. If not for those things I would be in a drugged state 24/7 I can assure you of that.

I have liquid Hydrocodone right now and Ambien to sleep. Also Xanax to take if I start to get an anxiety attack and of course my Zantak 150 for my ulcer in my gut. I have muscle relaxants also for my disc disease but there is no way I am taking that with everything else right now. I just keep trying to hold off on the pain meds cause they make me sick as a cow. Today I did 2 minutes of meditation on the table before they put the mask on so it helped. I love them guys. They give me more hugs I swear.

I love you guys too and Karen I am so thankful the humidity is gone for a spell. It was terrible those two days. Whoooo.

Blessings,
Barb~

Hi Barb, unfortunately some get an ulcer and some get a mild sunburn. You must have very fair skin. If it gets itchy DO NOT scratch it. They gave me some stuff called Desonide Cream 0.05% (it is a sythetic corticosteroid).

I think Karen hit it right - you may be undermedicated for pain. Your anxiety is understandable but that can be managed as well. I took Zanax during the entire process.

I lost so much weight that the mask actually loosened quite a bit. It shouldn't be tight around your neck anyway - it is actually your nose that they use for guaranteeing accurate postitioning (along with the tatoo of course).

Hi All
My Mom is on the only ward in a big city hospital that says you cannot have a glass of warm milk, you can have cold but not warm, the microwave is for the staff not the patients, I only have one word to say how I feel and I wont post it here.
Sunshine... love and hugs
Helen

Well my marks are all on the mask and none on the skin. The point of entry must be the hollow of my neck because that is where there are globs of fat like stuff and melted skin. It looks like melted skin to me. If I dab it with a cloth it comes off in blobs and strings that are like gum. I do have dark hair but I have pale blue eyes and fair skin. If I go out in the sun I am burned in 15 minutes tops unless I start out with a really heavy sunscreen.

They gave me a script for the 5% cortisone cream and that stuff set me on fire. I put it on there and slid down the wall all the way to the floor so they said skip using it. I am still on the Biafine cream and the gel pads. When I first put that gel pad on after my skin has dried it feels like a billion mosquitoes stinging me at the same time for around 3 or 4 minutes. Its horrible and more horrible. I don't scratch it but if I started I truely believe I would dig my entire throat right off to the bone.

What I want to know is 1. How can keeping the skin moist ever result in healing and 2. Five minutes without the cream or the gel pad and my neck is dry and stiff as a board. It even feels like a board. How long will this last after treatment? It is horrible.

Oh (((((((Helen)))))) I love you and my prayers are with your mom and you too sweetie. I am so sorry.

Barb,
This was 8 years ago, but I was told no Biafine on open wounds. They must be closed for it to work. They gave me a couple of days off at the end of treatment because they were not targeting the same area. I think 3 between the last final 3. I had XRT, but then I spend my summers on the beach. I also only had 36 treatments and no chemo and my recollection is you are having many more. See if they can find some cream that will help you heal better. I feel so sorry for you.

Take care,
Eileen

Hi Barb, I often wandered the same thing about how keeping it moist would help it heal. I did a little looking online and i found this related to open wounds.
Keep it moist.

Well they must not consider it an open wound because of the oozing maybe? They asked me again today if I was still using the Biafine WDE. I just read it and it says for wounds, abrasions, ulcers and donor sites. I am totally confused now but then again I always was.

I am hoping to get some relief this weekend so they won't "break" for two weeks since I only have 6 treatments left. I am having XRT also Eileen. I really only have a problem with that one lousy spot which is the hollow of my neck. The rest is dark red but hasn't bothered me to much of an extent.

Bless you,
Barbara~

Dear Barb
You are having a Helluva time of it!
I used to get a bandage for sprained limbs, it kind of sticks to itself, and wrap Pete`s neck with that. It held in place really well.
Hang in Barb , not long to go now, you can do it!
Think of that island and the BB`s.
love
Marica

Ugh it is getting soooo hard to hang in there. I would just like to sleep all weekend and forget about it. My neck is bleeding tonight. Will it get infected do you think? Infection scares the crap outta me because I am a diabetic and the radiation is doing nothing to help me control that along with all the carbs I am drinking down each day.

It could very easily get infected so be very careful. Maybe the burn unit nurse at the hospital can give you some help. If they do put you on antibiotics then you will very quickly have a thrush bloom as well. Have the Diflucan (or other anti-fungal) ready if that is the case. All of us have compromised immune systems for a time. I had small infections just erupt on my neck and not even where the radiation was aimed.

Wash your hands constantly, especially when touching or changing dressings on the wound site.

Barb, one more cliche-"when the going gets tough, the tough get going" Keep fighting, you are needed, gal. Amy

Oh man I didn't know antibiotics would cause thrush. UGH! It must be like the vaginal infection you can get from taking a stron antibiotic for another infection. Geeze what a two edged sword.

I think Dr. Levy better have plenty of time for me Monday because I certainly have a lot of questions for him this week. Oh well I am lucky I never had to go to the Barrett Center though I have read many good things about it even from the BDS site and some friends who were treated there I feel glad to be in the Kenwood rad center.

Sorry I am rambling on. I am taking extra care of my skin this weekend. Treating it with kid gloves so to speak. I really do not want to "break" with only a week and 1 more day of treatment.

Oh gosh Gary. Cancer stinks. I guess the rad goes everywhere in our necks is why you got the small infections huh? Now is this Diflucan perscription? Seems like every time they give me a script its a "formulary or non-formulary" and costs me more money as my co-pay goes up if its not generic. I am lucky to have insurance and I will never complain again everytime they raise my premiums so I am shutting up now.

Love you all,
Barb~

I reread this page and I am noticing I am repeating myself. Please forgive me. I am either 1. An emotional mess or 2. I suffer from oldtimers/CRS disease.

Barb,
That's exactly what it is.

The radiation is very penetrating. I lost the hair on my neck in 360 degrees permanently. The radiation also zaps the red blood cells during treatment passing through the carotid arteries and that doesn't help much (in addition to some chemos damaging the bone marrow - although not Cisplatin so much). The red blood cells replace themselves every 120 days. It was almost 2 years before my WBC got to wothin normal range.

I would exchange the kid gloves for latex ones!

The Diflucan would be prescription.

My insurance costs $1200/mo and my copay is $5. $10 for name brand prescriptions, chest x-rays and lab work and $50 for PET/CT or MRI scans.

I had these tiny moles on my neck which were barely noticible and now they are black! There seem to be more and more of them too. I hope they go away but I bet not. Just another crappy cancer thing.

OMG you poor man! My insurance is through the USPS as an annuitant from my late husband. That would be civil service. It costs me $140.00 a month. If he were alive it would be around $45.00 a month. Go figure. My generic meds are $10.00 and then the formulary is $20.00 and the non-formulary is $30.00 All my X-rays, scans, doctors, surgery and radiation treatments are paid in full. The meds they give me there such as the Biafine and the Vigilon pads are paid in full also.

I paid the ENT $10.00 for the first apointment and that was it other than the Miles, the cortisone, the Ambian and the Hydrocodone. The Xanax is from my primary care doctor.

I am never complaining again! Now what is this thing that my ear is hurting. Feels stopped up like it has water in it. Only one ear..the left one.

Gary,

i think it's extremely unfair that you lost your beard, but I still have to pluck mine!!! However, the hair I lost at the back of my head has grown back, so i should not complain.

Barb,
I had an earache of and on for a month after the radiation treatment. It never got really bad, and my ENT said it was nothing to worry about, although he did take a lot of time studying my ears with his little light. - I also actually had a vaginal infection at the same time I had thrush, all part of the same misery...
You know, moles do get darker when you get a suntan or burn, so I expect it's the same thing, and they'll probably turn lighter again when your neck heals.
Your venting reminded me of my whining messages last year, and how wonderful it was to hear from others who had survived the same thing. I am amazed at anybody, included myself, who can live through the treatments, returning day after day to be tortured, and even remaining grateful to all those people who developed the treatments, so we can live through all this, and survive. And the nurses, who try their best to be gentle and respectful while they torture us.

Helen,
And then there are some nurses who shouldn't be. What are they thinking about???
Leena

Leena the nurse said they will stay black. Ugh. Two many "beauty marks" are not a good thing.

Yeah' my ear hurts sometimes and sometimes not. It never lasts more than a day or two and then its fine for a week. How weird. Oh I gotta pluck my "beard" too. Seems like I have hair sprouting all over my chin. How weird is that? Maybe I may think seriously now of a circus job. Wadda ya think? hahahahahaha

Sorry but I am rowing on dry land tonight. Must be tired out.

hugs and blessings,
Barb~

Oh the nurse gave me some triple antibiotic cream. She says it will help the healing. I does feel better already. I still have most of the Hydrocodone left. I just do not like meds. If I can manage without them I am okay. The Hydo is left from when I had the surgey in May. The doc offered me any kind of pain killer I wanted today but I say no thank you. I can do it!
Blessings,
Barb~

I didn't lose my beard - at least nor all of it, but the hair on the neck was toasted. It also killed of of the skin tags and i think some moles as well. The hair follicles on my neck literally fell out.

Barb, I should have mentioned that the insurance bill is for my wife and I (I am 58 and she is 52) and now the company I work for picks up the bill every month as part of my compensation package.

Don't be a hero, pain will NOT make you heal faster. Pain management is an essential part of the healing process.

Ear pain is pretty typical when the eustacian tubes that drain into the throat get fried. They will regenerate in time. I had trouble hearing for a while - like I had a cold or something.

Well I am glad to hear your company picks up the slack. Health insurance if a must these days. My friend lives in Denmark and health care is free and so is education. Thing is taxes are around 40% of your income I believe she said, I'll have to ask her again to make sure, and sometimes you have to wait months to see a doctor unless its an emergency.

Her mother was visiting there from N.Y. a couple months ago and ate lobster and went into shock. She took her to emergency and they wouldn't even treat her until my friend drove home and grabbed her credit card since her mom was not a resident. It could be worse for us I recon.

Gary to tell you the truth my skin is only painful when it dries out, right before treatment mainly, since I have to take the Vigilon pad off. As long as I am slathered with cream and have a pad opn its really tolerable. If it ever goes over my threshold I will definately ask for the dope.

I wish my moles would fall off! They are gross looking. I am one of those people who have spent a lifetime taking care of my skin and now these tiny black moles are popping out all over my neck. They must have been there all along just not big enough to see.

Oh well my life is much more important than a mole so let the fun begin! : I am in rare form today even if my ear feels like it have water in it and my neck feels like a tree trunk. hahaahahahaha

God bless us everyone,
Barb~

"Tiny black moles" or hair follicles falling out?

UCSF sent me bills for RT even though my HMO paid the bills - it was over 300K just for that.

My wife is an licensed esthetician so we're really into skin care over here - wear your sunblock every day - even when it's raining outside. We have a lifetime risk of skin cancer due to the amount of radiation we have received. I got a letter from the doctor to allow me to have darker window tinting on my driver and passenger doors with 99.5% UV filtering.

She told that most creams will dry out your skin so the doctor was right.

Actually it was my Pharmacist who said creams dry out the skin. Weird huh? I told my rad nurse that and she just gave me a "duh you do not know what you are talking about" look.

Nope its moles. Teeny tiny black moles. Excuse me but what is a "esthetician?" I could look it up most likely but I am so tired tonight. Feel like I ran a 6 week marathon race all of a sudden. Its just now 5 p.m. and I am ready to go to bed.

I have my air on 71 and I am burning up. My legs and hands are swelled up. I am having, quite frankly, a lousy night.

I wonder how much my treatments are? I don't get any kind of copies of bills or anything. I would be curious to know though.

Well I think I may go lay down and put the fan on me. Blah.

Bless you,
Barb~

Hi Barb,
my individual treatments were $5K a pop. It was an additional 20K for programming & simulation.

Estheticians (skin care technician AKA beauty therapist) deal with the skin, do facials, microdermabrasion, chemical peels, waxing, etc. They are often employed by dermatologists as an in-between. They are trained to identify and refer to doctors issues involving the skin.

Please tell your wife I need Botox forthe frown lines between my eyes. My skin is fine and almost wrinkle free which for a 60 years old is pretty good if you ask me. My hair aint gray either. Must be a good gene floating around in my family somewhere. hahahahaha

My treatment was cancelled today due to the hydrolic bed beinbg out of whack. I guess I am luck though to go all this time and this being the first really bad maching breakdown. Week before last the machine was down but it only was a 20 minute delay which wasn't all the bad I didn't think.

Now I am going to have to find out how much my treatments are or I will go nuts. Maybe one of the guys there knows. I will ask them tomorrow. I ask them everything so I doubt it will surprise any of them. TG for insurance.

Well I am tired again. Blah. Ready for bed at 2 in the afternoon. Pretty sad. I need to put that Miles stuff on the inside of my lip too and hopefully it works and takes some of the discomfort out of it.

God bless,
Barb~

You need to go to a doctor for Botox - that's a prescription injection.

The machine I was treated on broke down several times as well. They were in constant use so downtime really screws up their schedules.

Yeah' its sad to say they are in constant use. I feel like an oldtimer there so many new ones come in for simulation everyday. I cry all the way to the car. I am such a cryer. I am glad there are no children there. My husband went to some CC and he had his treatments on the upper floor and on the lower floor were the children. I cried so much he finally asked me to stop coming. I cannot take other peoples pain and sorrow as well as I can take my own.

Maybe I will just forget Botox and use Preparation H. I hear it works for under eye bags. hahahahahaha

Ignore me. I am swelled up and hot and tired. I am also whining.

Blessings abound,
Barb~

Barb
Jerrys RO gave him silvadene crm.I know it works wonders on burns and I know it helps his Rad burns.

This triple antibiotic seems to be doing the trick. Its not a script either. Just over the counter standard. Shriners Burns IOnstitute is pretty well know so if they recommend it then I am all for it.

Blessings,
Barb~

Barb, when you are tired---sleep! It doesn't matter what time of day or night it is. The only time clock you have to worry about is getting to treatments. Otherwise, qiut watching the clock and do what your body feels like it needs.My hunch is lots of rest CA Amy

My body feels like doing nothing. It does feel like eating but it doesn't want to walk into the kitchen to make anything. It doesn't want to sleep and it doesn't want to stay awake. I believe it is getting a tad depressed as all it wants to do is cry all the time.

Barb, you amaze me! I find it very encouraging that you are able to be up and around. But, Please sleep when you need to and cry if you want. I slept the whole time during radiation. I assume it was the drugs and pregnancy that caused me to be so tired. Don't worry what others think if you are in bed or if you are crying. You need some type of outlet for your emotions. And if you don't mind taking more medications your Radiation oncologist will prescribe an antidepressant. Of course, I couldn't take one because of the baby ( I don't understand that though, I was taking so many pain meds and going through radiation what was one more drug!)
Take care and get some rest there will be plenty of time afterwards to do anything you want. Mary

Well once again I am better. Last night I packed 3 boxes and took a ton out to the dumpster since I am moving at the end of next month and I want to get some stuff into storage this month.

Go ahead and yell at me. I am ready.........

<<<<<<YELLLLLLLL>>>>>>>


:-)

Cindy

Why am I surprised? hoho

Please don't laugh at this, but my radiation therapist told me to use "Bag Balm" (yes, as in a cow's udder bag) to aid in the soreness of radiation burns and ulcers. It took my wife going to four or five places, but at a local feed store, they had the balm and I have been using it since. It is wonderful, scentless, and lasts for hours and hours. My wife says her hands are much softer after helping apply my stuff to me. You might give it a try. Good luck and God Bless!!

You know I was thinking about that for a while. I did get the Cow cream at the drugstore but I am sure thats not as intense. I could go to the feed store in town I recon and get some.

I have one more rad to go tomorrow. I am so glad its finally done. Now just the wait to see if it worked. I am hopefull so now if I can avoid getting hit with a truck I should be fine.

GB,
Barb~

My family has used bag balm for generations now, we use it for every and anything! Comes in a green tin can with one size being perfect to keep in your purse. It's pure magic.

I am going to get some this week Minniea. I am kind of a "helper" at the center. I try stuff and let them know how it works. Of course they tell me what ingredients not to get bur otherwise its up to me.

Have a great day!
Barb~

You know you are an OCF member if you have Bag Balm rather than Vasoline Intensive Care Lotion on your bedside table. Amy

Barb,

I am so sorry you are going through this! You have every right to vent... :-) If there is anything I can do for you, let me know. If I was in Ohio, I would come over and give you a hug...So I am sending you a hug over the internet. Hang in there. It will get better.
Love
Stephany

Barb,

I haven't been around for a bit but I still wanted to tell you how sorry I am for the rough road you are on. It sure brings back a few vivid memories that I haven't thought of lately. I ran across a couple of pictures my uncle from Japan took when I surprised him on his visit to the states. He wanted to take a bus from Houston to Dallas after a cruise from California through the Panama Canal. I didn't want to alarm him so I didn't say anything until I picked him up at the bus station. My hair was thin, wrapped and my neck was one solid red oozing mess. He was shocked and until I saw the pictures he emailed me, I didn't fully understand. When I saw them a few days ago, I reminded how bad it really was.

I remember the last few treatments and just hoping it would soon be over. I could smell a chlorine-like smell somewhere in the back of my brain that got more foul towards the end of treatment. The last 3 were the roughest for me. We found some stuff called Domeboro that cleared up my neck in 2-3 days. I just soaked a washcloth in it and applied it (directions on the box) and it was like magic for me. You might give it a try. Nothing else they suggested did much of anything except burn like hell.

I sure got tired of the insurance hassles, too. My insurance was about $1,000 per month and I still paid for a bunch of stuff out-of-pocket. I don't think I will ever recover financially but I won't give up easily.

I just finished a 9 month computer certification class. When I enrolled, I honestly did not think I would live to complete it yet I knew I had to plan more than the 4 weeks between doctor visits.

It will get better but not immediately!

I am hoping for the best for you and the journey to soon be behind you.

Ed

Sorry Ed but I just saw this. Oh you had a horrible time. I am soooo sorry and so glad its over for you now. This is one nasty disease and the treatments aren't much better.

God bless,
Barb~

It could very easily get infected so be very careful. Maybe the burn unit nurse at the hospital can give you some help. If they do put you on antibiotics then you will very quickly have a thrush bloom as well. Have the Diflucan (or other anti-fungal) ready if that is the case. All of us have compromised immune systems for a time. I had small infections just erupt on my neck and not even where the radiation was aimed.

Wash your hands constantly, especially when touching or changing dressings on the wound site.

Barb, one more cliche-"when the going gets tough, the tough get going" Keep fighting, you are needed, gal. Amy

Oh man I didn't know antibiotics would cause thrush. UGH! It must be like the vaginal infection you can get from taking a stron antibiotic for another infection. Geeze what a two edged sword.

I think Dr. Levy better have plenty of time for me Monday because I certainly have a lot of questions for him this week. Oh well I am lucky I never had to go to the Barrett Center though I have read many good things about it even from the BDS site and some friends who were treated there I feel glad to be in the Kenwood rad center.

Sorry I am rambling on. I am taking extra care of my skin this weekend. Treating it with kid gloves so to speak. I really do not want to "break" with only a week and 1 more day of treatment.

Oh gosh Gary. Cancer stinks. I guess the rad goes everywhere in our necks is why you got the small infections huh? Now is this Diflucan perscription? Seems like every time they give me a script its a "formulary or non-formulary" and costs me more money as my co-pay goes up if its not generic. I am lucky to have insurance and I will never complain again everytime they raise my premiums so I am shutting up now.

Love you all,
Barb~

I reread this page and I am noticing I am repeating myself. Please forgive me. I am either 1. An emotional mess or 2. I suffer from oldtimers/CRS disease.

Barb,
That's exactly what it is.

The radiation is very penetrating. I lost the hair on my neck in 360 degrees permanently. The radiation also zaps the red blood cells during treatment passing through the carotid arteries and that doesn't help much (in addition to some chemos damaging the bone marrow - although not Cisplatin so much). The red blood cells replace themselves every 120 days. It was almost 2 years before my WBC got to wothin normal range.

I would exchange the kid gloves for latex ones!

The Diflucan would be prescription.

My insurance costs $1200/mo and my copay is $5. $10 for name brand prescriptions, chest x-rays and lab work and $50 for PET/CT or MRI scans.

I had these tiny moles on my neck which were barely noticible and now they are black! There seem to be more and more of them too. I hope they go away but I bet not. Just another crappy cancer thing.

OMG you poor man! My insurance is through the USPS as an annuitant from my late husband. That would be civil service. It costs me $140.00 a month. If he were alive it would be around $45.00 a month. Go figure. My generic meds are $10.00 and then the formulary is $20.00 and the non-formulary is $30.00 All my X-rays, scans, doctors, surgery and radiation treatments are paid in full. The meds they give me there such as the Biafine and the Vigilon pads are paid in full also.

I paid the ENT $10.00 for the first apointment and that was it other than the Miles, the cortisone, the Ambian and the Hydrocodone. The Xanax is from my primary care doctor.

I am never complaining again! Now what is this thing that my ear is hurting. Feels stopped up like it has water in it. Only one ear..the left one.

Gary,

i think it's extremely unfair that you lost your beard, but I still have to pluck mine!!! However, the hair I lost at the back of my head has grown back, so i should not complain.

Barb,
I had an earache of and on for a month after the radiation treatment. It never got really bad, and my ENT said it was nothing to worry about, although he did take a lot of time studying my ears with his little light. - I also actually had a vaginal infection at the same time I had thrush, all part of the same misery...
You know, moles do get darker when you get a suntan or burn, so I expect it's the same thing, and they'll probably turn lighter again when your neck heals.
Your venting reminded me of my whining messages last year, and how wonderful it was to hear from others who had survived the same thing. I am amazed at anybody, included myself, who can live through the treatments, returning day after day to be tortured, and even remaining grateful to all those people who developed the treatments, so we can live through all this, and survive. And the nurses, who try their best to be gentle and respectful while they torture us.

Helen,
And then there are some nurses who shouldn't be. What are they thinking about???
Leena

Leena the nurse said they will stay black. Ugh. Two many "beauty marks" are not a good thing.

Yeah' my ear hurts sometimes and sometimes not. It never lasts more than a day or two and then its fine for a week. How weird. Oh I gotta pluck my "beard" too. Seems like I have hair sprouting all over my chin. How weird is that? Maybe I may think seriously now of a circus job. Wadda ya think? hahahahahaha

Sorry but I am rowing on dry land tonight. Must be tired out.

hugs and blessings,
Barb~

Oh the nurse gave me some triple antibiotic cream. She says it will help the healing. I does feel better already. I still have most of the Hydrocodone left. I just do not like meds. If I can manage without them I am okay. The Hydo is left from when I had the surgey in May. The doc offered me any kind of pain killer I wanted today but I say no thank you. I can do it!
Blessings,
Barb~

I didn't lose my beard - at least nor all of it, but the hair on the neck was toasted. It also killed of of the skin tags and i think some moles as well. The hair follicles on my neck literally fell out.

Barb, I should have mentioned that the insurance bill is for my wife and I (I am 58 and she is 52) and now the company I work for picks up the bill every month as part of my compensation package.

Don't be a hero, pain will NOT make you heal faster. Pain management is an essential part of the healing process.

Ear pain is pretty typical when the eustacian tubes that drain into the throat get fried. They will regenerate in time. I had trouble hearing for a while - like I had a cold or something.

Well I am glad to hear your company picks up the slack. Health insurance if a must these days. My friend lives in Denmark and health care is free and so is education. Thing is taxes are around 40% of your income I believe she said, I'll have to ask her again to make sure, and sometimes you have to wait months to see a doctor unless its an emergency.

Her mother was visiting there from N.Y. a couple months ago and ate lobster and went into shock. She took her to emergency and they wouldn't even treat her until my friend drove home and grabbed her credit card since her mom was not a resident. It could be worse for us I recon.

Gary to tell you the truth my skin is only painful when it dries out, right before treatment mainly, since I have to take the Vigilon pad off. As long as I am slathered with cream and have a pad opn its really tolerable. If it ever goes over my threshold I will definately ask for the dope.

I wish my moles would fall off! They are gross looking. I am one of those people who have spent a lifetime taking care of my skin and now these tiny black moles are popping out all over my neck. They must have been there all along just not big enough to see.

Oh well my life is much more important than a mole so let the fun begin! : I am in rare form today even if my ear feels like it have water in it and my neck feels like a tree trunk. hahaahahahaha

God bless us everyone,
Barb~

"Tiny black moles" or hair follicles falling out?

UCSF sent me bills for RT even though my HMO paid the bills - it was over 300K just for that.

My wife is an licensed esthetician so we're really into skin care over here - wear your sunblock every day - even when it's raining outside. We have a lifetime risk of skin cancer due to the amount of radiation we have received. I got a letter from the doctor to allow me to have darker window tinting on my driver and passenger doors with 99.5% UV filtering.

She told that most creams will dry out your skin so the doctor was right.

Actually it was my Pharmacist who said creams dry out the skin. Weird huh? I told my rad nurse that and she just gave me a "duh you do not know what you are talking about" look.

Nope its moles. Teeny tiny black moles. Excuse me but what is a "esthetician?" I could look it up most likely but I am so tired tonight. Feel like I ran a 6 week marathon race all of a sudden. Its just now 5 p.m. and I am ready to go to bed.

I have my air on 71 and I am burning up. My legs and hands are swelled up. I am having, quite frankly, a lousy night.

I wonder how much my treatments are? I don't get any kind of copies of bills or anything. I would be curious to know though.

Well I think I may go lay down and put the fan on me. Blah.

Bless you,
Barb~

Hi Barb,
my individual treatments were $5K a pop. It was an additional 20K for programming & simulation.

Estheticians (skin care technician AKA beauty therapist) deal with the skin, do facials, microdermabrasion, chemical peels, waxing, etc. They are often employed by dermatologists as an in-between. They are trained to identify and refer to doctors issues involving the skin.

Please tell your wife I need Botox forthe frown lines between my eyes. My skin is fine and almost wrinkle free which for a 60 years old is pretty good if you ask me. My hair aint gray either. Must be a good gene floating around in my family somewhere. hahahahaha

My treatment was cancelled today due to the hydrolic bed beinbg out of whack. I guess I am luck though to go all this time and this being the first really bad maching breakdown. Week before last the machine was down but it only was a 20 minute delay which wasn't all the bad I didn't think.

Now I am going to have to find out how much my treatments are or I will go nuts. Maybe one of the guys there knows. I will ask them tomorrow. I ask them everything so I doubt it will surprise any of them. TG for insurance.

Well I am tired again. Blah. Ready for bed at 2 in the afternoon. Pretty sad. I need to put that Miles stuff on the inside of my lip too and hopefully it works and takes some of the discomfort out of it.

God bless,
Barb~

You need to go to a doctor for Botox - that's a prescription injection.

The machine I was treated on broke down several times as well. They were in constant use so downtime really screws up their schedules.

Yeah' its sad to say they are in constant use. I feel like an oldtimer there so many new ones come in for simulation everyday. I cry all the way to the car. I am such a cryer. I am glad there are no children there. My husband went to some CC and he had his treatments on the upper floor and on the lower floor were the children. I cried so much he finally asked me to stop coming. I cannot take other peoples pain and sorrow as well as I can take my own.

Maybe I will just forget Botox and use Preparation H. I hear it works for under eye bags. hahahahahaha

Ignore me. I am swelled up and hot and tired. I am also whining.

Blessings abound,
Barb~

Barb
Jerrys RO gave him silvadene crm.I know it works wonders on burns and I know it helps his Rad burns.

This triple antibiotic seems to be doing the trick. Its not a script either. Just over the counter standard. Shriners Burns IOnstitute is pretty well know so if they recommend it then I am all for it.

Blessings,
Barb~

Barb, when you are tired---sleep! It doesn't matter what time of day or night it is. The only time clock you have to worry about is getting to treatments. Otherwise, qiut watching the clock and do what your body feels like it needs.My hunch is lots of rest CA Amy

My body feels like doing nothing. It does feel like eating but it doesn't want to walk into the kitchen to make anything. It doesn't want to sleep and it doesn't want to stay awake. I believe it is getting a tad depressed as all it wants to do is cry all the time.

Barb, you amaze me! I find it very encouraging that you are able to be up and around. But, Please sleep when you need to and cry if you want. I slept the whole time during radiation. I assume it was the drugs and pregnancy that caused me to be so tired. Don't worry what others think if you are in bed or if you are crying. You need some type of outlet for your emotions. And if you don't mind taking more medications your Radiation oncologist will prescribe an antidepressant. Of course, I couldn't take one because of the baby ( I don't understand that though, I was taking so many pain meds and going through radiation what was one more drug!)
Take care and get some rest there will be plenty of time afterwards to do anything you want. Mary

Well once again I am better. Last night I packed 3 boxes and took a ton out to the dumpster since I am moving at the end of next month and I want to get some stuff into storage this month.

Go ahead and yell at me. I am ready.........

<<<<<<YELLLLLLLL>>>>>>>


:-)

Cindy

Why am I surprised? hoho

Please don't laugh at this, but my radiation therapist told me to use "Bag Balm" (yes, as in a cow's udder bag) to aid in the soreness of radiation burns and ulcers. It took my wife going to four or five places, but at a local feed store, they had the balm and I have been using it since. It is wonderful, scentless, and lasts for hours and hours. My wife says her hands are much softer after helping apply my stuff to me. You might give it a try. Good luck and God Bless!!

You know I was thinking about that for a while. I did get the Cow cream at the drugstore but I am sure thats not as intense. I could go to the feed store in town I recon and get some.

I have one more rad to go tomorrow. I am so glad its finally done. Now just the wait to see if it worked. I am hopefull so now if I can avoid getting hit with a truck I should be fine.

GB,
Barb~

My family has used bag balm for generations now, we use it for every and anything! Comes in a green tin can with one size being perfect to keep in your purse. It's pure magic.

I am going to get some this week Minniea. I am kind of a "helper" at the center. I try stuff and let them know how it works. Of course they tell me what ingredients not to get bur otherwise its up to me.

Have a great day!
Barb~

You know you are an OCF member if you have Bag Balm rather than Vasoline Intensive Care Lotion on your bedside table. Amy

Barb,

I am so sorry you are going through this! You have every right to vent... :-) If there is anything I can do for you, let me know. If I was in Ohio, I would come over and give you a hug...So I am sending you a hug over the internet. Hang in there. It will get better.
Love
Stephany

Barb,

I haven't been around for a bit but I still wanted to tell you how sorry I am for the rough road you are on. It sure brings back a few vivid memories that I haven't thought of lately. I ran across a couple of pictures my uncle from Japan took when I surprised him on his visit to the states. He wanted to take a bus from Houston to Dallas after a cruise from California through the Panama Canal. I didn't want to alarm him so I didn't say anything until I picked him up at the bus station. My hair was thin, wrapped and my neck was one solid red oozing mess. He was shocked and until I saw the pictures he emailed me, I didn't fully understand. When I saw them a few days ago, I reminded how bad it really was.

I remember the last few treatments and just hoping it would soon be over. I could smell a chlorine-like smell somewhere in the back of my brain that got more foul towards the end of treatment. The last 3 were the roughest for me. We found some stuff called Domeboro that cleared up my neck in 2-3 days. I just soaked a washcloth in it and applied it (directions on the box) and it was like magic for me. You might give it a try. Nothing else they suggested did much of anything except burn like hell.

I sure got tired of the insurance hassles, too. My insurance was about $1,000 per month and I still paid for a bunch of stuff out-of-pocket. I don't think I will ever recover financially but I won't give up easily.

I just finished a 9 month computer certification class. When I enrolled, I honestly did not think I would live to complete it yet I knew I had to plan more than the 4 weeks between doctor visits.

It will get better but not immediately!

I am hoping for the best for you and the journey to soon be behind you.

Ed

Sorry Ed but I just saw this. Oh you had a horrible time. I am soooo sorry and so glad its over for you now. This is one nasty disease and the treatments aren't much better.

God bless,
Barb~