It has been 60 days since my last of the 36 wacks from the radiation squad. Since then I have extreme damage in my mouth and tongue (Burns). I just started eating 3 meals a day (last week), this week I am recommended the ''Plug'', and this is breaking my spirit. I am taking in about 2000 cals a day, Dr. say you need to push start your nutishtion forward and get past the LAG. I am now 71 Kilos, down from 86 on July1.

Is the food bag terrible and do I really need this spirit breaker...? Your Views are welcomed!!

Just been to France to see a friend who had a stroke, champagne and red wine, tried sips like battery acid.Ugh, the TUBE, I was threatened with that if I lost too much weight. The whole of my mouth and right side of my tongue had been cooked by the rad treatment, painfull as it was to swallow, I drank gallons of water, and eat three times a day rice very soft done in rice, with out sugar just rose water, everything I tried the taste was deformed, everything tasted of salt,had to wash the mouth with stuff for the terrible ulcers, ice cream tasted like lumps of lard. I went down three sizes; but am now gaining; but can only manage bland foods. I would not have the tube if you can swallow. Bises Garance

"""To peg or not to peg""" Some of us had no choice - except whether to have a nasal tube or a stomach peg. I opted for the peg (as there would be enough discomfort going on in the facial area!) Having the peg inserted was a bit uncomfortable but once I was used to it I found it became my """security blanket""". Sounds odd I know. Immediately after my operation and for some months afterwards the peg was the only means of nourishment, but even when I could take liquidised food by mouth I still kept a peg feed going for the last meal of the day. I was often too tired to force food down come night-time. I also put medication through the peg and lots of cool, boiled water to flush it through. The peg is handy if you have to be away from home and can't find pureed food, although finding somewhere to actually """feed""" is not always easy!

The peg needs weekly attention as water inside the balloon has to be replaced to keep the peg firm. Some people can do this themselves but I rely on the District Nurse as I have a """difficult""" valve on mine.

If you can eat normal food maybe there are other options open to you. But if your doctor says you have to have a peg fitted then this is no big deal and, as I said, it can become a friend! - at least you know that you are getting all the right nutrients with the minimum of hassle - and it won't be forever.

I'm hanging on to my peg until after my next operation to reduce the flap. I was in hospital last week but the op was cancelled. I take a very small feed last thing, just to keep it patent.

Good luck

Hello to all, The FEEDING TUBE: I will be honest with all of you, I don't know what I would have done without it. I really don't. I now know I can swallow some. But I still am afraid to. It is soar the first few days. After that you cannot feel it, or I can't. Plus I get all the nutrition that I need to keep my weight up so I can fight off the infections and the disease. Don't be afriad of it, this is the least of the pain. Plus you can still eat by mouth if you can that is. This is just the little push that you must need to help you thru this time. I am like Brenda,,,It is my security blanket.....Always Vicki Lynn

Thank you all,

I left the hospital last night, without notice :bomb: , I have had enough. I took my pills with me and ate like crazy. Monday I will likely ask for the peg, the doctor says I am to weak to fight infections even with eating food. I beg to differ, but what do I really know :boxedin: .

I just cringe :ashamed: thinking about anything hooked to me at night, I am SOOOO tired of it.

The review board of doctors (3) said I need it, so either I do it immedaitely or give myself 6 days to see if mouth feeding works. What choice?

Again, your experainces are nearly better than what the doctors say, whataa day' know?

Got the bill for August... 33,000$, keeping me in the hospital is profitable, I have been there 92 days.I'm a math guy I know :thinking: .

Greeting from Snow capped peaks this weekend! Vines are turning red and winter is coming.
Chris

Chris, the feeding tube is really not that bad. You need the nutrients in the food they give you to fight on the inside. Trust me. I am not HOOKED up to anything. I feed myself. It was 5 times a day. Takes about 20 minutes. Now I am down to 3 times a day. I didn't like the BOLO feed they call it. Where you are feeding while you sleep...I just didn't care for that at all. You can request the one you want. I am like you, I don't want to be HOOKED up to anything. I hate I.V.'s for that very reason. You can't do anything...With all those tubes hanging from you. I know you are scared, I was too at the beginning. I was terrified. To be honest. It isn't every day you see a tube hanging from your stomach. But I can't eat so Thank God there is the feeding tube or I wouldn't be hear today... Like I told you the first few days you know it is there, honestly, after that you don't feel it at all, I don't. It is a a lot of trouble for me getting dressed and things. For I have to find a place to put it. Remember to never let it hang. Always have taped up. What I did was get a wide ace bandage. I wrap it around my waist area with the feeding tube facing towards my chin. This way it doesn't pop the top open. They used to make a device that held it, but I haven't been able to locate one as of yet. Anyone know about one please let me know...Also I should be getting the THERABITE in this next week. I am so excited about this. This is a device to open the mouth up,,,there is another one that is called a DYNASPLINT. I haven't been able to locate this one yet....Best of luck to you Chris, you are not alone.....Always, Vicki Lynn

Hi Vicki
The Dynasplint is for the knee . You will find the Therabite effective - use it a little often through the day to stretch the muscles and improve the mouth opening better than it is.

Best wishes
Vinod

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

Hi Chris welcome to the grey skies of London, re your bill, life has no price, and if you come out O.K. in the end it will have been well spent; you would not cringe at the price if it was an ultimate motor of your dreams, you would be proud, so be glad you have the cash to spent on your ultimate self; and here is hoping things will go better for you. Garance xxx

Dr. Joshi, No there is another Device that a ORAL CANCER patient on the other CANCER site used as well as the THERABITE. She said it was called a DYNASPLINT it is for the mouth as well. She said that the DYNASPLINT helped her more than the THERABITE, however she could only RENT it and she couldn't afford to. It was 90.00 a month....I have emailed her for more information on it....I told her that all I could find was things for the knees tooo....Will let you know as soon as I find out....Vicki Lynn

Aetna considers the Therabite Jaw Motion Rehabilitation System medically necessary to treat mandibular hypomobility in irradiated persons with head and neck cancers. So it is worth checking if your health insurance can cover the cost of the Therabite.
Aetna is a U.S.A. leading provider of health, dental, group, life, disability and long-term care benefits.

I found th eplace for the other device called DYNASPLINT. It is the USA at LAndmark MEdical. Nancy said she used if for about 3 months, until she couldn't afford to rent it any longer. SHe also has the THERABITE. She liked the DYNASPLINT a lot better tho she said than the THERABITE. However the insurance paid for it and not the other. I am looking into this right now. Ric called them on friday. They are sending me some information about it....Vicki