loads of questions

Kent,

Welcome and what a great post.

I had 2 PEG tubes, one very painful and did not work and one very good and unpainful and always worked.

It may be uncomfortable to start, but it becomes like a hanging appendage which people go to great lengths to tie up, tape, clip, etc…

You should flush it every day whether using it or not.

Dress normally, maybe a loose fitting shirt.

You get used to it. I used jevity, hang it high and drip away most of  the times, but there does come the times when you want to syringe it in and plunger away your meal.

Matt

Kskokko said:

Question 2

THe radical tonsilectomy and neck dissection was 2/20.   On 3/13 I had my last meeting with the ENT surgeon who was happy with the surgeries.  May not see her again until after chemo/rad

How long will the stiffness and numbness remain?    My range of motion is getting better and I massage and stretch several times a day, but the neck still feels like a rock.   

out of my neck dissection...it is still numb. I think that is something that stays. Keep moving your neck once you start rads....as radiation will stiffen things up. There are stretching exercises to help keep your neck limber. 

p

I wasnt diagnosed with HPV but I did have partial glosectomy and left side neck dissection. One year out and my neck is still somewhat numb and stiff but much much better. It all seemed so depressing early on and the healing process is slow but I feel better all the time. I hated all the tubes and every needle. Just thinking about them gives me the spooks. The main goal is to put the weight back on and keep it all in check. I've visited my surgeon for exams and scans and I've followed all orders. So far so good for me. I wish you a speedy recovery and keep up with the humor.

Eat, eat eat. Anything and everything you want, high calorie  foods especially. If you gain weight it will probably be temporary: radiation will burn the calories up.

My husband reminds me to tell you things will taste differently so branch out and eat different things if your favorites start tasting off to you.

Stay hydrated. Enjoy Gatorade.

Go to your favorite restaurant and have your favorite meal and then do it again.

This is a most excellent group of people who will be here for you with great information.

I won't worry about gaining weight.  It could happen, but in +95% of cases it doesn't.  If you gain weight they will write medical papers on how you did it.   I think they start getting worried when loss gets to greater than 10% of initial body weight, and from what I can gather that ends up being most of us.  It won't just be your throat, your appetite goes too.  And I am discovering it's not coming back.  I am 3 months post, eating most things, and not gaining an ounce.  My stomach shrank, small portions are very filling.

I was overweight at 220, my primary care was on me at every exam.  Now I am 180, and my vitals and blood ox are perfect.  Cancer may have added years to my life.  Now I see Dr. Pudgebucket walking in my neighborhood at lunch, trying to keep his under control.

Kskokko said:

gaining weight

To the contrary, I understand the risk of losing weight and have been trying to put weight on.   Yes I have been eating lots of high cal 

foods for the first time, but have only gained 5 lbs.    It will be challenge to keep weight on.   

 

Kent,

It just comes down to getting enough calories by eating, drinking or by PEG.  It is nice to see a fresh face (which I was one once) and watch as you try to understand what happens.  I did not get it when my doctor said my taste buds were going to disappear?  BUT, they truly go on a weird and wacky adventure which most all of us have been on.

Remember, hydration and nutrition will keep you out of the hospital and will make most everything run smoother.

Good luck,

Matt