hi Vicki, if you send your photo to Krishan he will put it on for you also ask him about your story.
Paul I do hope your ok
Cheers to both Maurice

THANK YOU MAURICE I SENT THE PICTURE AND IT IS ALREADY ON THE SITE ,WOW , THAT WAS FAST,, ,THANK YOU, KEEPING THAT HEAD UP,,, RIGHT????, ALWAYS VICKI LYNN WHERE ARE YOU PAUL???? YOU OKAY THERE BUDDIE??LET US HEAR FROM U,,K

Hi Vicki Lynn, nice photo, did you also ask about your story? I heard from Paul today he sounds to be feeling a bit better
Cheers Maurice

WHY THANK YOU KIND SIR,,THAT WAS BEFORE THE SURGERY,,OF COURSE,, YES I SENT A STORY FROM 1989 UNITL NOW,, HOPEFULLY IT WILL GET POSTED AND HELP SOMEONE OUT THERE LIKE US...THANK YOU FOR ALL YOUR HELP AND TO KRISHAN FOR SUCH A FAST REPLY..I LOVE THIS SITE...IT HELPS TO KNOW, REALLY KNOW THAT WE ARE NOT WALKING THRU THIS ALONE...IT WOULD BE AWFUL IF WE WERE,,THANK YOU SO MUCH,,ALWAYS VICKI LYNN

Greetings everyone. My experience with head & neck cancer is as caretaker for my husband. He was diagnosed with base of tongue cancer stage 4 in the fall of 2002. After radiation/chemo treatments, 3 separate hospital stays & a neck dissection to remove 24 lymph nodes he remains cancer free to date. He has had 2 gut wrenching biopsies since his treatments but all were clear. He has lost 60 lbs and all his muscle mass & uses a g tube for 6 daily cans of food. It has physically aged him. People have asked if he was my father. Cooking/eating/entertaining was a hobby and now he cannot swallow anything without coughing, choking. It embarasses him but he gamely tries eating daily. I have to calm myself, remind myself. He doesn't need the Heimlich manuever because it's not a blockage... it's his epiglottis, it's hard & slightly shrunken from radiation and doesn't 'close the hatch' as food or liquid pass down the throat. The tissue is permanently fried from radiation, it's lost that graceful wavelike motion that moves food from mouth to stomach most of us take for granted. To add insult to injury my husband seems to have permanently lost his powerful rich baritone voice to hoarseness & squeakiness. It's been hard to watch him lose the respect he used to command with his physical presence. He has changed much on the inside though, on a spiritual level. Struggling with my own loss I've thought of Beauty & the Beast but I've wondered if the Beast isn't actually me.

Welcome aboard Arizona, very nicely put. Your husband has been through a WHOLE lot, to say the least. But you still have him with you. You fell in love with the whole man, not just his looks or his size. Though I know that that did have something to do with it. Though I will say that it is hard, horrible, sad and all those words to watch someone who you love so dearly and so much have to deal with this daily, as well as yourself, you have to deal as well. Your life stops because our lives have stopped. I know I see my husbands face. All that he hasn't been able to do now that the cancer has came back again. The worst with this I have found,, it doesn't take our minds. We still think, feel, want, remember,, that is the hardest part of this disease, I don't know is the hardest is the right word, but it is up there. Please feel free to vent, to talk, to ask, we are here,,just a keyboard away...always Vicki Lynn

Dear Arizona, As always Vicki Lynne speaks straight from the heart and the brain and I think I am going to call her the Oracle! I go along with everything she says. At the moment my eating is as catastrophic as your husband's. I have lost about 42 lbs since my laryngeal cancer was diagnosed five years ago. I too have really fried tissues from 35 doses of radiation and it is a constant fight to keep my weight from going below 98 lbs. I call it my 'job' really as I can't interview people in my journalism until I get my formerly best asset, soft Scottish voice, in proper working mode again. If ever. But I have to say that I count myself lucky that, so far, I have not lost my voice box as so many laryngees do.
These 6 build-up packets your husband has daily will keep you alive for ever if need be! But they just do not add the weight. Hence the muscle loss. I bless the person who made the pashmina fashionable as it hides a multitude of sagging sins!
Have you thought of adding softened bran, wheat, oats, whatever, to the feeding tube to add weight? I started doing that six days ago and was delirious tonight to find I'd put on three lbs. And I'm sure you know about all these liftine exercises your husband can do, very gently, to firm up his muscles.
Chuck impatience out, along with dwelling on the beautiful past. Getting back on top of oneself, well as good as it will get, is a long and sometimes depressing business, food being such a vital part of one's life force, anticipation, fulfillment.
When you say he chokes and is self-conscious I take that to mean, Arizona, that he can actually swallow, even with difficulty. That is me. I really can't 'perform' with others around, even my dearest ones. I like to splutter happily with a wee bag beside my plate, undisturbed, with all the time in the world. I had a bit of an upsetting time at the weekend going to see a [a party of old friends who had rented a house by the sea and had huge feasts every night. Of course they understood that I could only manage blended soup and ice-cream but as the evening went on and the wine flowed they kept trying to tempt me with little tastes. I felt numb with uneasiness and was so glad to drive home through the night rather than have people persuading me to have 'lovely scrambled egg' in the morning.
Which, as you know, is just impossible to get downstairs.
I suppose your husband is doing all these voice exercises? They are a huge help. Especially the breathing and the humming. Any actor friends are full of tips for this.
Well I supose this hasn't helped, Arizona, as your husband's case and mine are totally different. As is Vicki's and everyone. But we share this care and love for each other, and understand what we are all coping with as best we can in our own fashion.
He is lucky to have such a super, suportive wife. Remember, be kind to YOU too!
Regards Ishbel

Thanks for the kind replies, Vicki Lynn & Ishbel. I was lucky enough to go away to the mountains with one of my daughters (sans computer). My husband was able to go off fishing with some friends. Nice break for both of us. Funny you should mention voice lessons Ishbel, I signed my husband up for a singing lesson this week, hoping it might rehab his throat muscles in a different way. It was fun after he got over his selfconsciousness! The teacher was very thorough and tried to get him to focus and use his voice more efficiently. She pointed out the way he was attempting to force volume in his speech could scar his vocal cords. There isn't enough space to express my frustration with how it seems my husband is being punished for not dying! Cancer patients are on their own to heal from the devastation the cure brings... I am grateful my husband's life was spared but wow, now the work begins. Insurance argues about paying part (we pay the bulk) of specialized physical therapy 1x weekly that keeps throat & shoulder tissues flexible & stretches his jaws apart to be able to eat a sandwich (if he could). This week the dr. recommended a dilation procedure to stretch & widen the inside of the throat and that it be performed every 4 mos. for 2 years. There was no joy at that news, it's not a pleasant procedure. I'm searching for any alternatives for him. He really isn't bothered by this as much as I am. He has a lot more serenity than I do. Well, peace & blessings to all it is a beautiful day here in the desert.

Hi, I have just found this site after searching for some kind of help for my mother in law...... She had surgery for cancer of the tongue in september 2002, which involved half tongue being removed and replaced with skin and tissue and blood vessels from her arm, then skin from stomach was grafted onto her arm, she then had radiotherapy,
Nearly 2 years on she is not producing her own saliva, so has to use artificial, and is limited to what she can eat...She is so depressed but wouln't see her Gp, we are all made to feel extremely guilty when we eat or make any signs of enjoying our food. To be honest I'm sorry to say that it is getting close to one of us losing our temper with her...
I myself have health problems but have learned to move on and grieve for the old me and to make the most of the future, I have tried to tell my mother in law that she needs to look forward, but she seems so stuck in the rutt.... can anyone please offer me any guidance.
but I fear that unless she realises herself that its time to move on, that it will be like this always.....
:banghead:

Hi Tanya

The mouth is often dry as a result of the radiotherapy. You can get Biotene samples of products that help with the dry mouth for your mother-in-law. She could also try sucking SST lozenges.

The swallowing problem is best analysed by a speech therapist to determine what the problem is. Often the reconstructed tongue is not capable of the movement necessary to push the food against the roof of the mouth and squeeze it back to the throat for swallowing. A removable plate fitted in the roof of the mouth may help.

Some of the others will have more advice about these problems.

Best wishes
Vinod

This message has been edited. Last edited by: Dr Vinod K Joshi,

Dear Tanya, I must say after reading your post, I was very bothered by your mother-in-laws actions..She shouldn't make you or the rest of the family feel bad for not having cancer!!! This is crazy, yet it sounds like it is what she is doing..I am sure that she is depressed by what you wrote. She is playing the blame game I call it..Where if I feel bad so is everyone else. This is not healhty for any of you. This disease knows no limits, no right or wrong, it doesn't care, it's sole purpose is to make one so miserable that death is almost a blessing. This is the disease, what she needs to do is to fight this disease. To stop letting it take over, instead she needs to take control of her body back, how ever much she can,,,you are not helping her by letting her attack you or the rest of the family. Even though we are sick does not give us the right to be disrespectful towards others. Doesn't mean that we stop being human beings. I will not tolerate being nasty just because I am having a bad day or I don't feel good. Didn't take that from my own kids, I don't expect others to take it from me. She has to stand up on her own..Unfortunatly that is another side to this disease, it is all up to the person who has it,,,we are the ones who hurt, suffer, cry and so on. You the care giver, have to be ready for what ever the patient dishes out...You have a tough job, I know I have also been a care giver with my own mother, now I have cancer so I have been both. My mother was nothing like your mother-in-law tho.. She was always consoling us kids...How she did this I will never know...I wish you the best with this,, you have your hands full,,,come and talk to us anytime, you need to,,we will be here, if God is willing that is,,,,always vicki lynn

Dear Vicki Lynn
What a beautiful, eloquent letter that was to Tanya. You understand the cancer patient and the family and everything in between and I think you should have your own column in a health magazine.
I am serious. You would be so marvellous at advising people, so genuine, caring, that sometimes I forget the terrible times you have been through, survived and still come back thinking about others. That is a rare gift.
You are a gutsy princess! Love Ishbel

WOW!!! I am at a loss for words here,, yes me,,I know, it is a shock...THank you so much for those kind words,,,you have touched my heart...I love it,,,,Always, Vicki Lynn

Hi Vicki, Ishbel has summed up what I think we all think of your postings. Keep it up
Maurice

Why I thank all of you for your kind words and your thoughtfulness to me...I feel like I have a family here, I love it. THere is so much to say and to do. Since I have been silenced for a while, seems like I have more and more every day. This has been the worst of it for me though,, not being able to talk...Oh here I go on and on,, when this was a thank you to all of you,,,THANK YOU SO SO MUCH, Vicki Lynn