help please, 3 weeks since treatment finished

longtermsurvivor said:

hey Robyn

Be of good cheer.  None of this stuff is set in stone.  There are plenty here who have their PEg for a long time after rads end.  Months or even a year isn't that uncommon.  If you are swallowing liquids now you will eventually get there.  Obviously the general principal of rehabilitating the swallowing mechanism is to gradually increase the consistency of things that you are swallowing, but they have therapists who can help you with this.   You don't have to reinvent the wheel.  Others will chime in, but be reassured your experience isn't uncoomon.,

 

Pat

Robyn you are doing just fine. Probably right in the Norm. I still had pain when I swallowed and you don't. Keep drinking liquid and start drinking your supplements. This was my egg drop soup period. Can't stand it now! There are recipies in the super thread for smoothies and such. It's fine to still be on the Peg. Mine was in for 9 months. I lost fifty pounds from diagnosis and during my first year. How is your weight?

Robyn64 said:

thanks for replies.

I have lost about 10 kgs which I know isn't much. I'm just wondering that I'm getting all this pushing to start eating. Husband is listening to Dr's who say I should be eating at least soft foods by 6 weeks, so he is now pushing this and I dont think i can and it's making me very upset.

The smell of food, makes me really miss it but have no urge to eat it.

Coming off morphine I think I can feel the sore throat more now and this is upsetting me, I didn't sleep well last night. I just wish it was all over.

Very very upset,

Robyn

Robyn, well done so far. Never had a peg. Take this at your own pace. You can drink so why not start on broths or soups and slowly increase thickness. You can then add small pasta pieces or dip bread. Only do what you are comfortable with. Porridge or smooth cereals may work with whole milk? Good Luck, Gary

I'm always amazed when people have questions like this, and their Drs haven't answered them...has your Dr mentioned speech therepy, it's not only for speech, but, teaches you how  to swallow a new way. I had my epiglottis removed and recieved appointments and explaination right away...it took me almost 3 months to be able to swallow any food and then it was very difficult...I drank ensure and boost to get calories and started with egg yolks and tomato soup as first foods...for 1 year I ate nothing but soft food...I am now 2 years,10 months out and back to eating anything I want. 

Don't be hard on your self, I thi nk you're doing good...I didn't have a peg, but, I had a feeding tube down my nose for about 3 months.....your Dr has no idea what you're feeling, he's never gone through the actual scariness of swallowing food again...and 3 weeks is nothing..ask him about speech therepy..you won't regret it

Robyn, it's good to hear from you and I have thought about you often and glad to hear you are through with treatments.    It's only been 3 weeks so it will take time and it sounds like you are doing well since you've already weaned yourself off of the pain meds.

I had my PEG tube removed at about 3 weeks post treatment but in hindsight it was too soon.   You should keep it as long as YOU think you need it but if you can supplement the PEG tube with some softer foods with lots of protein like scrambled eggs, yogurt, grilled fish, baked potatoes, etc, it will help.   For several weeks after fiinishing treatment I was never hungry and only ate because I knew it was time to do so and forced myself.   Eventually the appetite came back but it was still pretty tough to eat (my throat and tongue were sore for months) and eventually I got back to a place that is now my normal.... Pretty much what I want but nothing spicy.   You can also drink protein shakes, although really cold (like ice cream or a milk shake) was painful, cool stuff like a protein shake mixed with milk was ok.

Your husband's just trying to help and I think about his comment (don't think about the inbetween but the end point) often.   I know I would get frustrated with my wife as well but all she was trying to do was help.

sounds like you're right on track with most of us but some are sooner to eat and others later but you're only 3 weeks out so doing great.   I do think at some point you do have to force yourself a little to eat and you build from there.

Keith

Take your time because we are all different and all heal different. It might be 3 week or 3 months just keep giving it a try and little by little it will come back, just don’t try to force it because you don’t want pneumonia. The main thing is that you are healing and in time you will be able to eat again.

Tim Hondo

Robyn,

Congratulations on finishing treatments, be it beat-up a little.

I too had a PEG, which was removed at 2 weeks post.  I wasn’t even close to being able to eat normally, but my swallowing was more than ready for a 95% liquid (smoothie, protein drink) diet AND I liked it!  I tried all the H&N hints available, but could not overcome my extreme distaste and feel of food.  I remained in said condition for 7 months, always sampling foods, always going to Sunday dinners with my parents always prepared to have a liquid blast.  Then out of the blue I was confronted with eating a turkey sandwich for lunch and it was great.  My 7 month ordeal was over.

Today, at 2y5m post I can eat anything I want and my taste buds and saliva (while different) are still improving.

Relax and find your own way (the right way).

Matt  

Don't rush Robyn. Your body still has an awful lot of healing to do, and you will still have a massive amount of inflamation on the inside. It was about 10 weeks before I could take my Ensure shakes orally. Keep trying with liquids, but be very careful and very gentle with everything. Keep opening your mouth, as that will try to stay shut and things will stiffen up. You will move along and get better as time goes on... but it does take a long time. Be patient and compassionate to yourself x x x x

Every body has it's own pace with recovering. It is a slow process, one step at a time. Remember yesterday doesn't matter, only today. If you can drink then start with liquid first. Cream of chicken soup [if you like it] is great and full of cal. 300 in the hole can. Milkshakes are 500+ for a med. and over 700 for large. Pudding goes down easy as well. Scrambled eggs are good. Remember you are learning all over to swallow so go slow and drink lots of water. Take a small bite and sip some water. Go carful with orange juice and soda or coffee. instead use Water, grape juice, apple juice, and more water. Eating will take time to finish a small meal so don't get frustrated. It takes me on average 40 min to eat 5oz steak and bake potato and I've been swallowing fine for 8 months. Just remember everyday you wake up, it's a new day and yesterday no longer matters, only what you're going to do today. You'll get there.

Bill