This is Miss Vicki, The cancer on the floor of my mouth had moved into my jaw. I had my jaw replaced with the bone from the lower left leg. I had a skin graff also to make the flap.WHich still is not healed. I still have my upper teeth. My tongue is the size of a dime. I had radical neck dissection on feb 04. No radiation for I had radiation twice already. My cancer was first diagnosed in 1989 as tongue cancer. It came back again in 1999, this time it was worse than before, I had to have 6 weeks of radiation plus surgery to remove half of my tongue. Now this in Feb. What I need help with is this, since the surgery I have had no theraphy with my mouth. I can hardly open it at all. I go to 3 different doctors every two weeks. I cannot talk, I also have a trache and a feeding tube..I have begged, on paper, for help. I feel like I am just here wasting away. I didn't have all this done to just sit here now and do nothing now!! However I do not know what to do. I am so pissed as I am reading all the posts on how well everyone is doing after there sugeries which is aswume, and then there is me. My Doc says that since I have been radiated twice it is taking longer for things to heal and for me to be patient. However my mouth feels like a rock and my breath, omg, does it reek because I cannot even get anything in there to clean it with. Which is about to drive me nuts..I started using some tongue compressers to open it up. Each day I have added another one to it so far I am up to 7 of them taped together to force my mouth open, I told my doc this and he said that that was okay for me to do..So what gives here. It has been 6 months since I had the surgery, shouldn't I be doing something other than nothing by now???The trache cannot come out because the neck is still to swollen for my to breathe on my own. The flap is hanging down back into the throat. They want to wait to see if this will go down on its own. Well hell isn't 6 months a long enough wait??? I live in Las vegas and it is dry as a bone out here. So I am constantly using the bullets to wet the trache. I spend all my time with it. I can hardly go do anything because of it. I still cannot lay flat to sleep, that is when I do sleep. Which is another problem. I am ready to scream here. All my doctors say is Vicki don't push this, you have had a major surgery and it is going to take time to heal. I realize this, but I just feel that I should be doing something to keep the mouth opened, that #1. Number 2 is that I should be doing some exercises to help me to learn how to swallow again. I would think anyway. They were doing some things in the hospital with me. But nothing since then. Please someone give me some pointers to help me along here,.I don't know what else to do...Vicki Lynn

Miss Vicki,

I can feel your panic coming through in the post. Do what you can to relax

Sabrina, I am sorry that I sounded like I am in a panic, I am not. I am frustrated, but not in a panic. They have given me sleeping pills, however even with those I am up every two hours. So needless to say I don't take them, I can sleep that long on my own. I have changed doctors. They are in California, these is why I don't think I am getting the attention that I need. My husband and I both have just done everything short of cursing to get these people on the ball. They just keep telling us that I have to be patient, well my patience is running thin. I am bored to tears, and yes I have tons of hobbies, what I want tho is to get better. I am at home everyday, doing nothing to get any better than I already am. I feel like I am all alone in this. I mean that the doctors are not telling me what I need to be doing. I had a problem with the feeding tube. I told all the of my specialists that is it infected and what can I do. They looked at it and said no it wasn't just to keep it clean. Well I already knew to do that. So I went to a doctor that I have known for some time and got a referal to a gastroenterologist, what a long word, anyway, he took one look at it and was very upset that it was that infected. Plus the feeding tube they put in me was for a child. So I had to take anitbotaics to clear up the infection plus put this cream on it, once it was cleared up he then put in a adult size feeding tube. I am just so upset about all this. No I have not considered flying out to another state, my doctors are all ready in another state, plus the money is at this point running thin. As far as a bath or a shower are concerned, cannot take them either. I have to sponge bath, because of my left leg, the feeding tube and the trache. I just needed to talk to someone. I don't want to do anything to hurt what the surgeon has done, so I don't know what exercises I can or cannot do. The speech and swallow were to contact me for over 3 months now. They just keep telling me that I am not ready yet. Well how am I going to get ready if I don't do somthing more than sitting here...So I thank you Sabrina for you taking them time to read my post, however your suggestions I have already done and am doing,,,,THanks Vicki

Hi Miss Vicki
I surely wish that things had gone better for you, I wish I could wave a magic wand and sort it for you.. As you problely have read my husband is blind and so he doesn't do notes, so I have borrowed a laptop and down loaded some free software.. www.readplease.com. just maybe this would help you to feel a bit more in control of at least one part of your life, I don't like ever to lose control of my life so I'm not looking forward to the next few months, and I really admire your fortitude and courage in facing and dealing with all that OC has thrown at you.. Your are in my prayers
Sunshine...love and hugs
Helen

Miss Vicki,

Inappropriate health care is absolutely frustrating. We've all had it at one time or another, and it's not fair that yours is coming at such a crucial time. Other than up and moving to another state with different medical care standards, I cannot think what else to do.

I've found that a hot washcloth over my eyes and/or lilac (or other pretty smells) essential oils are soothing. I remember someone's suggestion of smashing things, like dishes they didn't like, seemed to help.

Vent all you need. It's difficult to go through so much for so long, and still feel that the end simply isn't coming fast enough or at all. If there's are people that understand your ordeal, it's certainly going to be the people here.

Sabrina

Hi Vicki! Your posts made me cry. I have felt all the same things you are feeling, just in smaller amounts and for a shorter period of time. I have always felt I have fought my doctors on almost every point about timing of treatments & pushed & pushed & pushed. I drank water a week before the speech & swallow therapist said it was ok, I continued to eat as much "real" food as much as I could stand through rad & chemo, I hated the peg tube & the formula so much that I wouldn't use it to the doctors dismay. I stopped taking the pain meds during radiation because I couldn't take the constipation anymore. On & on & on I was rebellious. It sure seems to me that you have a right to be frustrated & push like hell to get some action. Why are things taking so long to heal? Is it low nutrition or something else? If that flap isn't right, demand they fix it so you can get the trach out & start using all those muscles again to swallow. The more that time goes by the longer it will take to get them working again. I'm sure you know all these things & are trying to get resolution. I feel your frustration! Were you originally treated at a comprehensive cancer center? Are you being treated at one in California now? Force that mouth open. Stretch, stretch, stretch!! Fight like hell! Get as much excersize as possible & stay as physically active as possible. Turn up the music real loud & dance by yourself! Get strong! Use that anger! Do you have a laptop computer so you can use speech software to make yourself heard? Don't give up! Try, try, try!! My thoughts & hope are with you!

Hello Miss Vicki,

You have come a long way on this most diffucult journey. I admire your strength. It is normal to feel frustated at less than acceptable medical
treatment. It kind of makes you want to scream!!!!! Hopefully "Let the Healing Begin"

I don't have any magic answers to your frustations. What I can offer is support. You are not alone. My new life sucks, BIG TIME.
I hate to complain about it because I'm still here, alive and kicking.
There were several members who fought the good battle only to lose in the end. They are my heros.
When I compare my pain and sufferung to others it makes me take a step back and evaulate my status. I hope you can somehow find some comfort in this storm we call cancer.

Your Friend, Danny Boy

Oh isn't it the truth. I hate to complain as well but there comes a time when you have to just to be heard. Everytime I start to with the doctors about this or that, they remind me of how far I have come and what all I have already done,,,but Danny is it so wrong to what it all. As much as we can get back?? I don't think it is. Danny I know this can get worse, I know it because it already has for me twice, but I want to do something for myself. Even my little grandboy's are asking when is nana getting better..I just feel like you said ready to scream!!!!!!just sitting here waiting, for what, I ask. Hell it something new does pop up, I am still trying to recoupe from the last...Thanks for talking and listening to me Danny, for I know how full your plate is, that sadens me to no end, I thank you for your time and you input, Always Vicki Lynn

Hello Erik, I will try to answer some of your questions. I am 47 years young. This is the third time I have had oral cancer. So here we go,,, I am not healing because I have had to seperate treatments for radiation. This has ruined all the tissue in the neck and throat area. So the skin, right now, is as hard as a rock. You can litterally knock on it. It is that hard. I have been trying to do things on my own. I did try to swallow some water, I about choked to death..Scared the life out of me and I am not a baby. I am a tough cowgirl from Oklahoma..This time, it is the death of me..My doctors say I am doing great,,however I feel like a failure..I slobber all over my clothes because I cannot swallow my spit even. I cannot close my lips to swallow. The flap is too big, however, they do not want to put me thru another sugery since I have had so many allready. He said he wants to let it reduce itself on it own time...And yes I am with comperhensive cancer center of america here in las vegas and in california...Thank you for listening to me,,,,always vicki lynn

Miss Vickie,

I'm sorry that things are so frustrating for you. I know just how you feel because I had to be Scott's advocate when he couldn't speak for himself. He would write messages that doctors sometimes took little time to read, then he used the free software from readplease.com that Helen mentioned and that was at least a way for him to have a voice. He was so frustrated because it seemed that the doctors weren't really capable of him after they had done their surgical responsibility. What they didn't seem to understand is that even the small things mean a great deal when you've had so much taken from you. He hated his trache, hated the feeding tube, but he tried not to complain. Doctors kept promising to take the trache out but they would then come up with a reason not to. They told him he would be fitted for a prosthesis to replace the roof of his mouth, then they never did. They never once suggested exercises to keep his jaw working properly after they had to break it during surgery. They just left us to our own devices on so many things. He wanted to drink a cup of coffee so badly that he could have cried, but there was no way he could with the trache and no hard palate. I felt guilty having even a sip of water in front of him.

I used to dip those toothette mouth swabs in water, juice, coffee, coke...whatever, then put them back in their wrapper and store them in the freezer. He could barely squeeze one into his mouth, but the coldness was at least refreshing, and the taste was better than using them plain. When he couldn't sleep we tried so many different things from Benedryl to old fashioned sleeping pills. Even when he did get to sleeping well, he'd choke because of that damned trache and have to sit up to sleep. It was one thing after another. It's like what we explored in the Activism forum with Gita's posts....it just seems like there should be more to patient care than cutting you up and sending you home.

I haven't said a thing to help you here except maybe to say, Hey, I'm listening and I understand.

Christine

Dear Vicki Lynn

My heart goes out to you. You are helping yourself here by acknowledging how you feel and getting it out to people who understand. You sound like such a wonderful person who has had such a tough deal.

I'm glad you have an extensive medical team on your side. Do they have a specialist nurse who could visit and help with the practicalities?

You are in my heart Vicki, with love from Helen

Hi Vicki! Again, my heart goes out to you. I hope my tone didn't come across as if to say you weren't trying, cause I know you are! I understand about the radiation damage to your throat & neck, but what about the site on your leg? You said it wasn't healing either & you couldn't take showers because of your leg & peg site. I was showering early on with my peg & forearm surgery & skin graft taken from my thigh. I could only shower from the chest down for a few weeks until the trach hole sealed up. That was a challenge & I did get water in it a couple of times & choked like hell! I wasn't suggesting you drink water with the trach in. I was talking about my rule breaking bad attitude! Keep yer chin up!

Erik, no no. I am so sorry if I sounded upset with you. I truly am not. I can't get the leg wet. The site where the skin graff was taken has ulcerd so I have to keep it dry and clean. Yes I could wrap it up and all that but why go to all the trouble..I will just sponge for now.. I will get this all taken care of tomorrow!!!!I will not stop until I do. Thanks for listening to me..Always, Miss Vicki

Miss Vicki,

You must be a very patient person. I have read many of your posts to other people, but I didn't realize you had these things for yourself to deal with. I would ask your doctors one more time with your husband or another friend to communicate that you NEED to have progress. It seems they are ignoring simple things and to me that means switching doctors (or at least threats of that) Demand a referral if you are not satisfied. I think it is a shame that they didn't help you with mouth opening issues. That is such a common side effect and for them to ignore it is simply poor care.

You are a remarkable person.

Miss Vicki,

Wow, what a long road you have had to travel! My heart goes out to you. Push your doctors to referr you to physical therapy asap!! There is no reason why they can't help you work those neck muscles. Deep tissue massage can make the hardness in your neck losen up a bit. Although it hurts in the beginning they can work wonders for you. Message can also help losen up the jaw. Give it a try! - Kris

Miss Vicki,

As I read your post, I am angry! There is absolutely no excuse for the treatment you are receiving. Six months is way too patient for you to just sit around and (quietly) ask for help. You should have your medical team set up some home health care agency to come and do everything you are asking for. You deserve to have physical therapy to begin the process of excercising your mouth/jaw muscles. They can provide some type of assistant to help you bathe, help you clean your mouth to prevent further complications from infections/bacteria, etc. You should not have all the responsibility to monitor your progress and develop your own plan for rehabilitation. I know the squeaky wheel gets the grease but do you think your lack of squeakiness is keeping you from getting the grease? You have a sense of where you should be by now and if you think you should be working with a physical therapist to re-learn the process of swallowing, opening your mouth, etc., demand it.

I can not imagine how you have made it the last six months. I know you have been through so much since 1989 and the doctors want you to heal but your number 1 and number 2 in the your first post seems very reasonable after waiting patiently for 6 months. You were told 3 months to PT and you should hold them to this. I am incensed at the PEG tube story as well. Do not settle for this type of treatment from anyone in the medical community.

That is my two cents worth. I know how tough you are and all you have been through but I do not want to sit here and hear you suffering so. I would be glad to make some phone calls for you if you need it. Just let me know.

Ed

Well I thank everyone for their input. I guess I just had to get mad. I felt so bad for always telling the doctors that I wanted more, when they were always telling me to be patient. Well no more, I am pleased to tell you that my speech & swallow theraphy starts thrusday. YEAH!!!! I just needed to get mad I guess. Thank you guys and gals for giving me that extra push I needed. Perhaps now I can get on with my life instead of sitting here watching everything and everyone pass right by me.....Love to all, Vicki Lynn

Yes Vicki, get mad..........kick some ass and take names. It's your life, you're the one that has to suffer for their ignorance. I remember when I was in the hospital I had a raging urinary tract infection, which brings alot of pain. My husband had to work that day so my mom stayed with me. Not one soul at that hospital was listening to my mother so I called my husband. I'm a former nurse so I knew that a simple perscription from the inhouse pharmacy would take care of my pain. My husband spent one hour calling, NONSTOP, the nursing desk on my floor. They had the prescription but just would not go get the meds. When they finally figured out that he was not going to let up I had my meds and within a few hours had such relief. The nurse was even begrudginly nice about it, laughed with my mom about how I was the talk of the nursing station and that I had best get good care or my husband would BE there, lol. I've had to have one biopsy since my surgery, it was in October. They told me the results would take 3-5 days. When that 5th day came you can bet I had my results.
We must always remember that our doctors WORK FOR US AND ARE RESPONSIBLE FOR OUR CARE. I'm thrilled that you got the speech and swallowing taken care of, keep at it until you get EVERYTHING

Thanks Minnie, Well those that know me, before this, I never waited at a doctors office, i would give them 15 minutes after my appt. time if they didnt have me in a room with a doctor, I would leave. I don't mean to sound like a snot but my time is just as valuable as theirs is. I do not apprecate it when they double book appts. But since I have now voice now, there is only so much I can do, you can give them the paper that I have wrote on, WhOOPIE!!!!!!!I am just so tired of all of this. Feeling like crap everyday but trying to keep moral up. Including my own. Trying to function in the new world I now live in. My husband GOD BLESS HIM. Working non stop, we have our own business plus he works full time. I don't know what I would do without him. I was in love with him before all this, I love him more and more everyday. He is scared tho he tries not to show it, I am scared but I do tell him..God Bless us all. ALways, Vicki

Hi Vickie,

I am SO glad that you'll be starting speech / swallowing therapy! That's a big step in the right direction. I just "graduated" therapy after spending 16, 1 hour long sessions with my speech therapist who became a very special person to me in my fight in trying to live a new "normal" life. I know it will be a lot of work and will take a lot of patience, but believe me when I tell you it's all worth it. I'm living (and talking and eating) proof!

Hugs,

Nancy

Good for you Vickie! I tell you, my speech therapist made a HUGE difference in my life. She helped me get the confidence to start eating soft foods again, etc. We took it step by step and I left each visit feeling better about myself. God Bless you, I think about you often! Love, Carol

Miss Vickie,

I am so joyous to hear the great news! I have been praying so hard for you and He has come through again. I am now praying for great results from the speech and swallowing therapy. If there is anything I can do to help you just let me know. I am so looking forward to meeting you in Las Vegas.

Ed

Dear Miss Vicki,
So glad you are now going to get speech and swallowing therapy, but you should also DEMAND a script for PT. Intra and extra oral facial massage should help with the trismus plus help somewhat with the dry mouth. Massage of the neck should reduce some of that hardness. See if they can recommend a therapist that specilaizes in Head and Neck problems. Keep stacking up those tongue depressors. You gotta get the mouth open to be able to eat.

Ask your doctor about this first, but another thing that might help is going for a facial. I had one about 4 months after radiation and the heat and moisture were wonderful, not to mention the massage. Also all that moisture is good for the trach. If nothing else, the relaxation alone is worth the money.


As to showering with a trach, mine is permanent so don't know if you temporary trach guys can wear any neck gear. Inhealth makes a shower guard that is good. email me if you want the details. Personally, most of the time I don't use it. If you have a shower that is large enough, stand with your back to it so that the water hits you below the shoulder blades. Cover your trach with your finger and turn and get the front of you wet or when you want to rinse. To wash my hair, I take a wash cloth and fold it triangular and roll it, then fold it in half and lay it in a circle just above the trach. Lean backwards and get the hair wet, put the cloth down, shampoo, and then reapply the cloth and rinse. This means you are shampooing with one hand and the other is holding the cloth. Tricky but it works. Hopefully that was 'clearer than mud'.

Now if I could only get up enough nerve to go in the ocean again.

Keep those drs on their toes.

Take care,
Eileen