I know this is probably not a new subject, but it is new to me. I am 7 weeks post treatment (tonsil,neck cancer) and doing pretty well. I have quite a bit of energy and really the only thing physically I have to complain about it is this resistant Thrush. I have been dealing with. This has been of and on for a couple months. I have had Fluconazole in May which seemed to help, then 6/23 I got it back and got Diflucan which seemed to help for a while then 7/20 I realized I had it back again and started Diflucan again ( I had a renewable perscription and called the nurse) I finished that but still had thrush so I called the Dr and he started me on it again 8/02 till I came down there to see him and then he changed it to itraconazole. this stuff is nasty. I am to swish and swallow 20 ml on an empty stomach once a day. nothing to eat for 3 hours before and 1 hour after. Well I do it and then spend 1/2 hour or so wretching. I can't eat for like 2 hours after and then its iffy.

I can't really eat, I am still on the feeding tube cause my throat hurts too much from the thrush. He also suggested eating yougurt so I started that too. for pain I am on Morphine 10ml every 6 hrs and a fentnyl patch.

OK...now for the rest of the problem. I feel like I am crawling out of my skin. I live in a pretty big house that feels too small, like claustiphobia, I get out and walk quite a bit which helps a little. I feel anxious. Mostly I feel like what is the point of life. I have a job which I am on leave from and can't really get back to for a month or two. I need to get rid of this thrush and the feeding tube. But in the meantime I am shaky,and depressed probably. I have never questioned what we are alive for before as a serious question. It like so what's the point..get up do some pointless things go to bed. I imagine this is pretty typical depression talking.

I read what some of you have gone through and then I feel guilty. I had stage 4 tonsil cancer which according to the PET scan I took 8/6 is gone. The surgeon wants to do another one in another 6 weeks or so and is still talking surgery. To take out the knodes. I guess there is one "persistant" node that doesn't show any cancer in the Pet scan but he'd like to take out., MY feeling is I've been hurt enough I just would like to get back to being able to eat normally and not have my throat hurt all the time. I am thinking if I can just get back to work and start drinking and eating I can get past this anxiety

Meanwhile I am a wreck. What is kinda getting me through the day is trying to find anything to keep me busy physically. Watching TV or reading gives my mind to much time to wander.

Anybody got other ideas, a good book on this problem ( other then the bible thanks)

Hi Mica! Hey man, don't despair! Your'e right on track. Just keep going through the motions & you will find your way. Your throat will gradually feel better & if you keep trying different foods you will discover you can manage to get them down. I floundered around for a few weeks asking myself the same questions & I'm not sure if I found all the answers, but my outlook improved incrementally with each small improvement. One day I realized I was slouching & moping around & decided to stop. It was really that simple. Chin up, shoulders back, chest out, I walked proud! I know it sounds silly but I was so tired of feeling bad that I just tried it. It worked for that moment. I've had to tell myself the same thing & then do it many times since. It was one of those small improvements. For me it's the small stuff that eventually adds up. So much of our battle is mental! Of course the physical knocks us down too. I had thrush a few weeks ago, but luckily it cleared up with 10 days of drugs. Ae you doing physical therapy? That has been real good for both my physical & mental state. If you can stand it, get off the pain meds! For me they caused more problems than they helped, constipation, fatigue, sleepiness. I just plain felt better all around physically without the opiates. You have to force yourself to keep swallowing to keep those muscles in shape. The old saying of use it or lose it does apply! The longer you WAIT for it to get better the longer it take to get better. Hey, thats been my experience. I hope you can use something from my rambling. How old are you? Do you have kids? Do you have access to some ? Go hang out with them! Kids have special powers of healing if you'll let it in! Your post touched me today cause I felt exactly the same way you do nat long ago! Take care! Erik

Hi Mica,
Your description brought back a lot of memories. I too struggled with thrush for quite a while. I was was taking massive doses of Diflucan - 200 to 400 mg/day for months! If you take enough of it, it can actually suppress your white cell count (I think they call it nuetropenia) -it does recover. That itraconazole stuff sounds pretty nasty. Tossing your cookies is not a good thing - tell the doctor. I tried yogurt too but I didn't find it to make much difference. Besides you have to find yogurt with acidophilus in it for it to be effective at all.

Depression is pretty normal at this stage - ask your doc for some meds for that. I would also get some anti-anxiety meds as well.

It sounds like you are doing pretty well over all, everything considered. It's about the same place I was at at seven weeks (and it's not a happy place).

Watch the constipation stuff - I took fentanyl and morphine also and it really dogged me -spent a lot of time curled up in a fetal position on the bathroom floor.

It will get better! I haven't had thrush problems now for over a year and life is pretty much back to normal. Hang in there - you are really close to turning the corner.

The book I used as a reference was "Living Well With Cancer" by Katen Moore and Libby Schmais. At about 7 weeks I also read "It's Not About The Bike" by Lance Armstrong which was really cool.

If you want these books (or any others for that matter) order them through the Amazon link on the OCF homepage and a small portion will go to support OCF.

Mica,

It sounds like you are going through about the same thing I did at about the same time, unfortunately. I happened to be about 400 miles from home, living in a motel trying to work. I spent literally all day long coughing up thick, brown goo and vomiting my lunch and breakfast. It's hard to believe it was that long ago but it was nearly 6 months. I had thrush pretty much all the time for 4-5 months. I think the burning in my throat and on my tongue was some of the toughest pain I remember. Even trying yogurt burned so bad I could hardly take it. If the medicine is making you that sick, try to go back to the Diflucan but take it a bit longer, if possible.

When you feel like getting out of the house, just do it. Getting a bit of fresh air and just walking to circulate the blood is not bad at all. I had some of the restless anxiety as you describe it. The shakiness could very well be side effects from the narcotics, too. It all takes time and even though it is tough right now, you still have a little more to endure. Hang in there, it will get better a little at a time.

Ed

Mica,

Thrush was my best friend - couldn't imagine life without it. I wake up, it's there. I try to eat, forget it. The pharmacy was probably getting a wholesale discount from me alone!!

I bought a tongue scraper (looks like a plastic triangle on a tootbrush handle - $3.29 at a pharmacy near you), and that seemed to help a bit. Don't go crazy and scrape until you bleed (tried that, wasn't pretty), but it helps.

As for the depression, I'm right with you Mica. One minute I'm crying from happiness because I saw a cardinal fly by. The next minute I'm crying because life seems pointless (whole get up, go to bed, and do it again the next day). It DOES get better. Definitely talk to the doctor about some happy pills to get you through this. There's nothing wrong with it.

As for the anxiety, my first two weeks back at work my chest would constrict, I'd be terribly anxious, my hands would start shaking, etc. Eventually I reminded myself that I went through hell, and no one and nothing there could compare to it. I haven't had that anxiety feeling since (point being, try to identify what's causing your anxiety), and I've stood up for myself when a particular guy there's being a jerk. Boy has it been nice to get back that "sass" I loved(the last three years of my life I sadly noticed it had disappeared. It was a trait I had loved about myself and couldn't get back until now)!

Mica, sometimes venting honeslty does the trick. I'd whip off emails to friends - the ones who innocently asked how I was doing - and I told them EXACTLY how I was feeling. Just typing it out, hitting those keys with anger, to someone other than my doctors/immediate family/other patients made me feel so much better. And my friends were happy (believe it or not) to be my ventees. So many told me how helpless they felt not being able to help, and surprisignly, confiding in them made them feel like they WERE doing something. And it helped me! ALOT!!

So vent here, vent there, kick something givable and not alive, get some happy drugs, and keep trucking. It WILL get better.

Sabrina

Hi Mica. I don't believe there IS any point to our existance. But that's ok, it's the only game in town and it sure beats the alternative! I agree with Erik: If you can, get off the morphine. The one time I had it, it made me horribly depressed. If you still need the pain meds, maybe you should try something else. Codine worked pretty good for me and I stopped taking it as soon as I could. Erik also makes another good suggestion: Find some grade-school kids to hang out with. Kids can be as much fun as a box full of puppies. Maybe you could find some puppies to hang out with? I'm getting a little silly now. In any case, hang in there as it does get better.

-Brett

Mica,

Same heew. The depression is a side effect of the Radiation. It goes away after a while. Talk to your doctor about Paxil or another anti depressant. It really helped me. I would cry all the time. I am a 6.0 250 (200 at the time) lbs man. Consider myself pretty tough. Doc told me it was normal. The neck sugurey is a piece of cake dude. It will not be like anyhtng you have gone through with the Chemo/Rad. It really didnt hurt bad at all. I only had a selctive however. If that is what you are getting forget about it! You will handle it easily. Keep on trying to eat you will start to get that taste back pretty soon.
Oh yea great job getting through it dude. You rock! We are all proud of you. Keep on taking care of yourself. Your gonna be fine.

Rock on!

Robert.

PS Sorry about the spelling I am on my way out the door for a steak dinner baby!!!!!

Oh yea Sorry. I am 6 months post and just stopped taking Diflucan for the thrush. Kept coming back on me.

Later

Rob

Hi Mica, your experience brings me back to the time when I was so depressed after the treatment. Ventilation is important but unfortunately those around us don't really understand our situation. Of course we don't want them to have first hand experience with this evil.Don't ever suppress your emotions. I remember the worst time I had was when I didn't cry, didn't get angry and was just a stone. I was somebody else, which scared my family and friends. Anti-depressant and professional help can be a workable solution. Reading helps a bit in lifting your spirit. I read a lot of stories about cancer survivors, mostly in Chinese. Two English books that helped me through are 'Tuesdays with Morrie' and ' The Art of Happiness'. By the way, don't push yourself too hard to get all your energy back. I got mine after one year post treatment. Still it is not 100%! Be patient and take care,

Karen.

Mica, I finished my rad and chemo on May 22 and had a neck dissection on July 26. I'm still recovering from the dissection. stiff neck, frozen shoulder, depression etc. You know when you think of it we've been through a lot!!! I can't compare it to anything else!! My main job now is to get better, everyday I try to do a little more, a little more. Don't listen to those thoughts about What's the point??? We do the work we get results.. Keep working to get better everyday. Keep talking with us!! WE need your experiences... I had a the thrush problem for months too...one morning it was gone, that quick. on to the next problem and we solve that one too. Keep Trying!!!Tom

Thanks everyone for your replys. What a great group that takes the time to reassure each other!. I am doing better. Today I took the Thrush meds and for the first time I didn't gag!!. Its been several hours now so I am going to try eating next.

I went to my regular Dr for my Thyroid meds and told him about the anxiety and he just wrote me a prescription for low dose zanix(sp) Just having the prescription actually made me feel better! I've only taken it a few times but it did help. I also found out that for some reason my thryoid instead of getting worse was actually working the other way and I need to reduce my synthroid from .175 to .1. I have had experience with too much of that stuff before and that could very well effect my anxiety level.

The other thing I did was agree to volunteer when the Dems called me. It was funny, cause my husband had just said why don't you try going down to the democratic headquarters and offering to do something and they called the next day. I can't do any phone calling I told them ( I still don't talk that much) but they had other things for me.

I am 55 and have grandkids. They live in Iowa City where my medical treatments are which is 80 miles from here. I always get to visit the 3 and 5 year old when I go down there which of course like many of you said is very good for depression.
And like some of you said I just decided to quit thinking about how bad I feel. When I start getting anxious I try the walk and try real hard to find some thing to get my mind off my self.
I am so fortunate to have many many friends and I have been keeping them all informed through out my ordeal. I am surprised how many people appreicate you keeping them in the loop. When ever they write or call and ask I tell them and it does help.

I was at the radiology Dr yesterday and he says I am doing good for as baddly as they beat me up. He also said that I am not going to be able to go back to work at the end of Sept like they had originally suggested, he is now talking first of November. and then part time. I am a letter carrier for the USPS. I am not sure how I feel about that, I really do miss work but I know I am not ready now. He also got on me about losing too much weight. My goal today is to drink all my food, no tube, and to get more down. Good to have goals eh!

Thanks again for your help everyone

Mica

Mica,

I'm very, very, very glad to hear you're doing much, much better. Good for you to find a place to volunteer at. I'll bet that helps you get into the swing of things when you return to work. I'm still adjusting to work life - started working four hours a day and have added an hour/day each week. It seemed to really help - just a suggestion when you return.

Sending good thoughts to get that weight on, keep cheery, and continue getting better.

Sabrina

Keep on top of your TSH level. Do you know what it was before you had radiation? Also, you are not supposed to take calcium, iron and I think zinc until 4 hours after the synthoid, or the synthroid has a lesser effect. I get my TSH level checked every 3 months and more often when it goes off my normal 2.5. I can usually tell because I either start eating everything in sight (too low) or I start falling asleep while driving (too high). Out of whack thyroid as a zillion different side effects.

Take care,
Eileen

Mica,
It is an odd thing, but most of us don't get depressed when we are going in every day or even twice a day for radiation. I recall ringing the bell to signify the end of radiation and thinking that I now I would be happy. Instead, I found myself sitting around the house, feeling lousy and depressed, with nothing to look forward to but the next tube feeding. The only thing that made me happy was thinking that I had enough pain pills that I could end it all if need be.

Then I started taking a 2 mile walk in the neighborhood each day. I made sure that I had a couple of errands to run, even if they were just little trips to the grocery store or drug store, and I would have at least one friend a day stop by. It was at this time that I was lucky enough to discover the OCF forum and that really helped too! I also contacted the social worker at M.D. Anderson and found out about a men's support group.(Unfortunately there are not many oral cancer support groups since our type of cancer is not that common.) The social worker also turned me on to an organization called Cancercare, that provided 6 free sessions with a psychologist for cancer patients. I went only once because within two weeks I was feeling so much better. Don't worry about the feeding tube. I kept mine for another 9 or 10 months after treatments ended. It was really no big deal.

Anyway, it is quite normal to feel depressed when treatment ends. It sounds like you are right on schedule. I learned a lot of patience during recovery, and that is not a bad thing.

Hang in there...you have so many wonderful things to enjoy as you feel better.

Danny G.

Hi Mica:
Danny is right on with his commentary above. He was extemely depressed (but still humorous for a Texan!) for a long time post-treatment. It took a village but he is in a really good place last I heard from him. Please take your inspiration from honest guys like Danny-depression is part of the deal and it does get better.

Kim