Hi All:

My brother, Fred, age 57 now was diagnosed with tonsil cancer in 2005. He went through tonsillectomy and radiation therapy at time of diagnosis. aHe now has late side effects of radiation including inability to swallow without aspirating (dysfunctional layrnx). He had PEG tube inserted over weekend and has been told that he cannot use his mouth, espophagus for obvious reasons.

Any tips on coping from being sociable to how does his family adapt to this change would be appreciated.

Many thanks.

Brother Ray

welcome to the OCF ray!
cancer....the gift that just keeps on giving.
this is certainly a tough break for your brother, fred.
was he eating normally before and just developed this side effect??? my hubby still has his feeding tube (PEG) although he can eat orally. did fred ever have a PEG--during his treatment??
there are others on here that have permanent PEGS--charm will hopefully chime in here.

Thanks for the note. The swallowing dysfunction is new, blamed on late effects of radiation--apparently pretty rare.

Ray

Your brother must be devastated. It is frightening that something so severe could happen 4 or 5 years after treatments. Did it happen gradually over a long period of time ?

I would definitely go and get 2 or 3 more opinions if he hasn't done that already. I hope it is a temporary situation and there is some swallowing therapy or something that can help him.

Karen

What type of radiation did he have?

Ray

While I briefly responded to your private message on this subject, I wanted to share my thoughts on the public forum so the other OCF members can chime in.
First and foremost, only your brother Fred can make the decision to come to peace with his PEG and have an active social life and deal with being literally excommunicated from the social fabric of eating & drinking. I've been struggling with writing a piece for Brian for a long while and am still not satisfied with it's whining undercurrent plus it's just not polished and witty enough to be a final product I can be proud of. Still here are some thoughts on this.
The PEG may not be permanent for Fred. He needs to be seeing a speech and swallowing therapist and should consider getting VitalStim electrical therapy and perhaps he can pass a Modified Barium Swallow test.
If Fred falls into the chosen few of us who never pass a MBS, it is devastating but hardly fatal although he may feel like he'd be better off dead sometimes due to the social isolation. The kindest thing you can do is to fully Understand that and not downplay it or minimize it. Most of the OCF posters only had a PEG for less than a year so they are more sanguine about it but I hate my PEG and always have.
I assume that right now Fred is on a gravity bag dripping food into his PEG or worse, stuck with a pump. In either event, Fred should try and use "bolus" feedings with a syringe as often as possible. Over a year later, my stomach is slowly transitioning and it took time. But I can assure you that it is so much easier to go out to restaurants with just a can of Jevity and a syringe instead of lugging a 6 foot pole and a feeding bag. (And YES, I have done it both ways, setting up my pole and bag in a corner where other diners did not trip over it.)
Your timing is perfect. Just yesterday my caregiver wife was feeling "guilty" about my plans for a lovely Easter Brunch at a Georgetown restaurant since I couldn't eat. I reassured her I loved to see her happy and that it did not bother me. I noticed on the Oprah show about Roger Ebert that his wife eats alone at the dinner table every night while Roger sits in his den with his feeding tube and feeding bag all alone and refused to let the camera take even one shot of him hooked up to the PEG. That seems awful lonely to me . So don't cut Fred off from the family dinner table.
A few months ago, I bought a VitaMix blender at a medical discount and now for most lunches and dinners, my wife just takes my plate of the same food she is eating and we liquefy it and I put it down my PEG tube. Psychologically and nutritionally it is much better. Long term, thing about a blenderized diet for Fred to supplement the canned corn syrup solids prescribed by so called dietitians in the medical profession.
Last but not least, consider an apron at home with a slit in it for Fred's feeding as nothing is more humiliating and frustrating then when something leaks and spills over your clothes. I have two of them and it's easier to laugh accidents off this way.
So my advice to Fred is : Keep your sense of humor and learn how to syringe your food in so you can join people out. Yesterday my wife ordered the shrimp biryani while I told the waiter my "entree" was the bottle of Taj Mahal beer.
That's my final hint: wine or beer (wine is much easier and less messy) down the PEG tube. No alcohol hits the oral tissues. Life can still be good and Easter is a wonderful time to contemplate rebirth and going foward
You are a great brother to worry about Fred
Charm

Ray:
What a nice, caring brother you are to write for Fred.

A productive life can be led with having a feeding tube. I have had one for 1 1/2 years was free from it for 6 months and now have it again for 8 months. Life is what you make it. We all need to learn to come to peace with our limitations. While I detest relying on a feeding tube, I do it since its necessary. It doesnt mean I like the situation at all, I hate it. Im sure your brother is very upset about what has happened. Late effects do happen to alot of radiation patients. Sorry to hear it happened to him after 5 years.

It is not necessary to lug the cans, syringe, bags around with him. For me the pump works since its something that is scheduled. I know that evenings Im on the couch with it running then it runs overnight while I sleep. All it takes is planning in advance to do the feeding before or after any events or dinners. Ive already ordered a glass of water and soup and sat there pretending to eat. Now I no longer bother with the charade. It will take your brother time to adjust to this new routine.

Best of luck

I'm with Christine on this. I just go to the meal and don't have any food. I'm not embarrassed by my new normal, but others at the table might be uncomfortable.

I do my feeding at home, hooked up to a pump usually, while I sleep. IF I needed the nutrition badly when others are eating, then I would use the syringe method, but I don't, so I don't.

I still have my PEG and use it from time to time. I still have it as I can not chew any food without pain. When my family goes to eat I take my food with me and "eat" along with them. It took my a long time to get to the point that I coudl do that. Yes, I do get stares and people look at me, I just politely smile at them. It is amazing how many changes your body goes through. For me I can swallow fine one day and then the next day I can only get down water, because everything tlse stays at the top of the throat, but then the next I can swallow pudding again. Radiation, the gift that keeps on giving. It will get easier with time or at least it did for me.

Thanks to all. Hopefully Fred will join this great support group. As a physician, I am truly impressed with the level of support you can and do provide. As a brother, I am most grateful.

I'm glad you learned of this website so you can share it with your brother. There are many supporters here to help. I'm also glad you asked your questions because Charm's reply helped me. My mother has had her PEG in for almost a year now - nothing by mouth. She uses the syringe w/Jevity but uses it at home before/after an outing. I wonder sometimes if she will ever be able to eat/drink again. I will keep your brother in my prayers that this will be a temporary set back for him! Take care.

The swallowing isn't anything rare. A lot of us have had this problem. I have more trouble everyday and have to force a swallow even for water but it is a necessity to live. I have lost another 8 lbs this past week after regaining it the week and a half before. You are a great brother to take care of his needs as you do. Good luck to both of you. I have no peg either but by a bad choice so it is my fault and mine alone.