Can I suggest you try a good acupuncturist? There was a study one by a cancer hospital that offered 6 weeks of acupuncture therapy to peg dependent patients - a high number of them (87% I think) were able to get off the peg by treatment's end- its worth a try. It has really helped with the stiffness and range of motion in my neck.

Good luck with your sister - and take care.

Oh, Kathie - I'm so sorry your sister is having such a difficult time. I can understand her reluctance to get on this forum. She has so much to handle now. When my son was in treatment, he only posted a few times because he said it depressed him and I can understand that but we still got lots of help for him because of what I learned by my being here. Sometimes when I read something I thought would help him, I would print out the pages and just leave them someplace where he was sure to see them and it did help him a lot. Maybe it could help your sister until she is ready to come see us herself. I do hope for some better days ahead for you and your sister.

Thanks cheryld - I will put your suggestion to her - it will give her something to think about and as you say is so much worth a try.

Thanks for your good wishes and you take care.

Kathiex

Thanks Anne-Marie...I also have printed out things I have read which I think may help Jo and I am sure as she progresses and comes to terms with today's news she will feel more able to become involved - I really do hope she will as like yourself I am always trying to get across to her how this forum would be such a good place for her to be and also perhaps her contribution will be of help to someone. I hope your son is doing well love and all the best

Kathie

Kathie

What a wonderful sister you are. Despite not being able to swallow, Jo is lucky since she has a sister like you. (but let's keep that between you and I).
Now to the "problem": it is a real disaster not to be able to eat or drink permanently. It's not clear that this is Jo's fate, since she can try not only accupuncture but also VitalStim (or one of the other Electrical stimulations).
Before Jo does anything else, she should have her doctor write a prescription for a barium swallow test administered by a qualified speech therapist which is the definitive medical exam to show what is exactly the problem. Lots of cancer patients cannot swallow at first but bounce back.

But it is indeed my karma to be on a feeding tube for life, so I hope what I have learned the hard way may help Jo if she too is consigned to a similar fate. I fought against accepting it for over a year taking VitalStim and swallowing therapy sessions three times a week for a year until I failed the 4th Barium Swallow test . If this is Jo's lot also then:
First, Jo should and must grieve for what is lost
Second, Jo can discover life goes on and is still worth living
In that regard, you can print out the columns by Roger Ebert that were here on on OCF - I've hit the links to make it easy.
Nils by Mouth
and its follow up column
The way to one's heart is thru the stomach
Third; for her birthday, Christmas, whatever, buy Jo a Vitamix. Then she can do a blenderized diet, here's an interesting OCF thread on that
Blenderized diet recipies with a free offer for tube feeders.
I use my Vitamix to "eat" dinner with my wife each night. The exact same meal she cooks with love, I put into the Vitamix and my tube. It's like a cyborg, with the Vitamix as my teeth and the tube as my throat so we can still share the exact same dinner. It really helps me psychologically.
Keep the Faith
Charm

What great suggestions, above - for you, Kathie and for your sister.
Charm - I'm so glad you re-posted the Roger Ebert columns. He is really something, isn't he? And so are you, - with your words, and your empathic compassion, you and the others offering your experiences, give not only practical, useful advice, but you also give "Hope" and that in itself is a very precious gift!

Thank you Charm for your kind words (will certainly keep it between you and I!)

Jo has been through all the tests barium swallow etc. etc. but with the same prognosis each time. However, after her last procedure her doctor spoke to her and again she was told that this was how it was going to be. She was so upset at first, as she did think there might be some light at the end of the tunnel, but this was not to be. She came across yesterday evening and seemed much more at peace and spoke of how she must accept that this was how it was going to be...There was even a little bit of the old sparkle in her eyes and June being the strawberry season in England we had some strawberries in and she just, got the taste, which she said was wonderful, and when she had finished just spit the residue into a tissue and rinsed her mouth...it was so good to see her doing that. She did the same with some fresh boiled ham we had just cooked....and when I made a cup of tea I made one for her along with everyone else and she just washed her mouth out with it and the taste made her feel good...So I am sure she feels so grateful that at this moment in time she still has her taste. Also she has now been given a mask to wear at night for her Rx induced sleep apnoea... I did try to get her to write something to you folks while she was here but she would not...I will keep encouraging her to do so without becoming a pain in the backside and hope that it will not be too long before she will as I am aware that even just a little thing someone writes or contributes can help someone else on the forum and just might make a difference to someone's life.
Will print out Nil by Mouth/The way to one's heart is thru the stomach. Roger Ebert and all he folk who get in touch are such remarkable and wonderful people.

Thanks to all
God Bless
Kathiex

Kathiex

Hi Kathie,
I also have extreme dry mouth from two rounds of treatment of both chemo and radiation (70 radiation treatments in all). My salivary glands were completely destroyed. I was unable to swallow for several months but can swallow now after months of swallowing exercises, a small surgical procedure on my esophagus and dilating my esophagus several times. However, the condition of my mouth (not just the drying but all the cells on my tongue and the whole interior of my mouth are out of balance) feels horribly wrong all of the time.
The only thing I have found that helps is swishing my mouth with Biotene mouth wash and spitting it out. I also do this constantly (not every minute but frequently). Sometimes when I am sitting quietly, not opening my mouth or exerting myself in any way, I can go for a half hour or so without swishing my mouth, but if I am talking or walking or really doing anything at all, I must swish my mouth more frequently.
My heart goes out both to you and your sister.
Patricia