I was debating whether or not to post and if I did post under what section to post. I sort of need to vent. My last treatment day was last Friday, the 11th. So I'm six days out, but cannot understand why these are the worst days and nights EVER. I don't mean to be a whiner about all this crap, but the iressa drug seems to have kicked my ass good. My neck and back are nothing but a huge scab of goo from this horrendous violent outbreak of acne. It was quite incredible actually. It seemed like overnight my skin became a pebbly beach of scabby stuff. It even spread to my throat area. The last week of treatment, the nurses were kind enough to wrap petrolatum dressings on it and gauze wrap my neck so I could get home okay without it all dripping onto the seat in my car. Now that I'm out of treatment. I pretty much just keep the area clean as possible, but I am not wrapping dressings on anymore. THey get gooed to the gauze and when I try to remove the dressings, the scabs just begin bleeding.

Tomorrow I have an appointment with my surgeon who I'm sure would like to set up the appointment in the next few weeks for the neck dissection. He refused to answer any of my questions earlier about it because it was too soon to be answering my questions about the neck dissection. For the past week I have had NO, and I mean NO voice at all. I cannot speak. It hurts too much. I got mad yesterday because I gave my spouse the number for the liquid food people to deliver and an order to deliver two crates of Ensure and gravity feed bags. He called the order in, and the idiot people called me at home trying to discuss this order and I cannot speak. I really pissed me off as I had tried to head this off at the pass by getting my spouse to order and talk to them.

Anyway, I still don't know how I'm going to communicate with the ENT guy tomorrow. Nothing makes sense. My mouth is so dry, swallowing hurts, and I can't talk at all. One day I can have a voice, and then it will disappear for a week? I'm still battling the mucous situation and everytime I do sit down for feeding with the PEG, I just know I'll be at the sink throwing it up in a few hours.

What I need to hear is when did the corner turn? People have told me to expect bad days after treatment. I thought I could handle it, but it's been almost a week and they just seem to be getting worse. I feel like I'm getting weaker and not stronger. I don't even know why I'm going to be talking neck dissection tomorrow when I can't even imagine my skin healed up enough to handle it.

Additionally, I just really need to hear some positive news. Does this generally come AFTER they do a neck dissection and have pathology to read? I don't know when I'll know where I stand in this fight or if I'm succeeding.

Well, I'm going to go see if I can't get a nap or something in. I'm just having a rough time. My patience is wearing thin and I just feel like I'm treading water here.

Thanks for listening.
Jen

Jan, this sounds pretty typical for this stage of treatment. It might a little worse even before you start to turn the corner. The full radiation effects continue for several weeks post Tx. So the burns, mucositus, etc. will continue. The skin on the neck is the first to heal, last being the tongue and tissues in the throat. There was an FDA "Dear Doctor" letter issued about Iressa - ask your oncologist. I posted more detailed information in another area of the site.

Figure about 3 weeks to turn the corner and progress measured in three increments for a couple of months. Patience!

Jen,

Calm down, Relax and try to understand radiation in culmitive. What your feeling is the build up of several weeks of intense radiation.

You will "turn the corner" as Gary said. I felt exactly the same way. I thought ok it's over time to get on with my life. Boy was I wrong.

It took a good 4 months before I felt normal (relative term). I did feel better after about 3 to 4 weeks as things started healing. I have said this on several occasions. I used to look back on the week that passed and say man, I really felt bad last week. This went on for several months. Next is the depression and over emotional cycle. This is where you cry at the drop of a hat. Another fine result of radiation. Then of course you cant forget the withdrawl from pain meds cycle. Then you hit the 1 good day 4 bad day cycle. That turns into the 4 good day 1 bad day cycle. Then you just feel better. You will get through this.
Stay hydrated what ever you do.
Drop me a line if you wanna talk.
Robert

That stupid company that delivers my gravity bags and canned food finally made a delivery today. The man was an asshole. He called twice before delivering... called yesterday to find out when to deliver. This entire order I wrote out for my husband to call in and set up so I could "spare" my voice. Then I had that pig of an idiot in my house this afternoon without the order I had placed. Even after I explained to him that I cannot TALK.... ooooo... I want to curse so bad. All I wanted was another order of the gravity bags, and two cases of the Prosure. The idiot man shows up with two cases of the high fiber nitrogen stuff, one case of prosure, one case of syringes, one case of gravity bags.

I was disappointed. I told him to leave only the prosure and the gravity bags.

Logical question? How do I start getting off the PEG tube feeding thing? Every time I try to eat normal food, it tastes terrible and gross. Should I start with soups and applesauce?

Either way, I'm going to need to quit dealing with this company that delivers the liquid food. The guy is a stupid ape.

Jen

Hi Jen, sorry things have been such a challenge. I found that it took me about 3 weeks before things stabalized and a few after that before things started to improve. From that point it has been a constant improvement with the difference from week-to-week getting smaller because you are getting closer to recovery. After a year I still look back a few weeks and say "you know, I feel better than I did a few weeks ago".

The good news for me was a couple of days after the surgery when the pathology report showed no cancer left. The chemo/rad had killed it all. I started to almost float from the good news. Had to ask the doctor to repeat it as I wasn't sure I had heard right. What a blessed feeling.

As far as the peg went, I got off it in late June, 4 months after treatment ended. After rad I couldn't talk either and used and etch-a-sketch type thing to communicate. Couldn't even swallow my own saliva. Now, like Ed I'm watching my cheeseburger intake as 20 pounds more weight is about enough.

Food taste is something I am still waiting for. Some of the folks have gotten their taste back within months. I'm a year out and still waiting. I taste some things, sort of, but generally I eat because I know I have to, not for the taste. Then again, my appetite came back and I do get hungry, just not much taste yet.

Hang in there, it will get better and better as the effects of the rad start to ease a bit.

Hi Jen,
You're in the worst time right now. I remember feeling SO dissapointed because I had expected to feel better as soon as treatment ended. I hadn't found this message board yet so I had no idea what was normal and what wasn't. All I knew was that after two weeks I still didn't have a voice, I still had an open area on my neck and I felt horrible. I marked off on a calender, religiously, each and every radiation day, a big old X, waiting for the last day so life would pop back to normal. Didn't happen that way. After about three weeks to a month I started feeling improvement. Eating was a slow process so have patience with it. I gave into the "tube" and used it to my advantage. It gave me the nutrition I needed to heal quicker. Don't be to quick to get it taken out.
I hope you turn that corner we all describe to you very soon.
Minnie

Jen, I often said that days after treatment could be more difficult than those during treatment because the side effects are cumulative. I also lost my voice for about 3 weeeks and gradually recovered. Since I didn't have neck dissection or PEG tube, my reaction might be different.The maximum dose of radiation (48 times) and 4 rounds of cisplatin led to the complete loss of my saliva. I could still whisper and swallow. After treatment, I kept my appetite and the taste didn't completely disappear. I only lost my sweet taste bud and it has never returned.Things could still get worse for a while but you will turn the corner soon. No one can tell you exactly when because we react very differently. For me, I suffered from depression when I was 3 months post treatment. So I needed a further 3 months to recover from my mental illness. From diagnosis to my cure, back to my previous job, it took me about 8 months. Be patient and be strong, you will soon get out of the tunnel.

Karen.

Jen, babe, I was right with you. Everyone's post have been spot on; it's cummulative but you WILL turn the corner. I remember turning REALLY bitter shortly after treatment b/c my body wasn't the 100% I wanted it to be WHEN I wanted it to be. Those feelings are normal and you will get by them.
As for communicating, I had a laptop to IM my husband all day who sat feet away. I rolled my eyes and threw my hands in the air when people left voicemails saying "I wanted to see how you're feeling, give me a call when you have a chance." People just don't get it b/c they've never been through it. It's kinda funny months later when they realize the mistake and say something resembling an apology to you.
I also used a notebook, especially when I was in the hospital for brachey and they put in a feeding tube that I didn't want. As I read your posts, my face screws up in that nose wrinkle, eye squint, and dagger stares remembering the frustration. I would write as fast as my little hands would go, underlining and circling words, pointing my pen furiously at what I wrote. I know you don't beleive it now, but I look back and laugh at those times.
Just think - when you get your voice back, you can call and yell at them ALL you want. I find an especially detailed letter to the company's president does the trick, even better when you say "I would like to know this is addressed and that future patients don't have to go through the....(Lay it on)".
My surgical oncologist explained recovery in these terms "Each day or week you may not feel better and better, but each quarter you'll notice a big improvement". He was right.
Even now, 9 months out of treatment, I'm going incredibly strong, yet Monday my body was exhausted (you know that feeling where your mind is fine but your body is saying "Nope. Sorry. I'm calling the shots right now, thank you"), and I went to bed at 8. My good friends' baby goes to bed between 9 and 10. Again, it makes me laugh.
When your voice comes back, it may sound a little rusty, so don't get frustrated. Most people that didn't know me thought I had a cold, and you can easily explain it away to that.
And don't EVER feel like you're whining to us. We've been there and know what it's like. Feel free to vent any and all frustrations!
Sabrina

Well, still no voice. I'm still pissed off about the man who kept calling to give me the delivery of food. Guess I could write them a nice letter. I suppose the fool I was dealing with OWNS the company? Nothing in this surreal world will surprise me. The surgeon performed one of those painful scope and chokes on me despite my radiated and scabby flesh. After blinking off the tears he says that the tumor is no longer there, but they will need to do the neck surgery on the nodes. I don't want surgery scheduled at all until I've turned some sort of corner. As it is now, I don't have ANY good days at all or good nights. We also spent another two hours because he wanted a CT scan of the nodes anyway.

I forgot to explain one other thing. My one close local friend sort of ran off on me as soon as she found out that I had cancer. I tried to make excuses for this thinking she couldn't handle the news, but have since come to a different conclusion. She's upset because I can't DO anything for her at the moment. She called me up wanting to know if I was mad at her, and then I asked her if she got the card from me for her birthday. Can you believe she was upset with ME? because I hadn't sent her anything for her birthday? She finally found the card and the gift certificate, but other than that I've pretty much forgotten what she looks like. She just doesn't give a crap because I cannot go out for lunch at Chili's and rip some mudslides or margaritas with her. In fact, despite the fact that I eat through a tube, she wanted my spouse and me to accompany her and her boyfriend out to dinner so we could what else.... celebrate her and her birthday. She also called, talked to me for one minute with the customary how are you doing? and then asked to speak with my husband about this computer she wanted to buy. She spoke to my husband for 30 minutes without even mentioning me, or asking about how I was doing, it was all about what she needed in a new computer system. When he hung up the phone, he shook his head and went "Geeze, what a piece of work."

Anyway, I'm dealing with alot. Mucho pain, not much relief. I just want to hop around the corner to mending and I still feel like I'm just putting one foot in front of the other and getting through it. Guess I could grasp the "no tumor" as good news.

If I got my voice back, I'd feel a major victory here. The dr. told me today I won't feel good for another four weeks. That's exactly around when I go through the neck dissection. I don't think I'm going to make it to "feeling good" before they toss me in the hospital for the next step. I just know I won't survive it if they do it when I'm feeling this poorly.

Jen

jen,

email me the phone number and I will happy to curse them out for you. I am ripe for ripping someone these days and all I need is an excuse. :-)

I have a very elaborate vocabulary and I am sure that I can get through to them without any ambiguity at all.

Also keep in mind that there is an advantage to having the mucos as thick as it is. Just spit on him. He will spend a week trying to get it off. Oh and tell him it is radioactive.

Revenge is sweet my friend.

Cindy