Well I get my Peg tube and port tomorrow. Did not know where to post this. Just FYI. Had 2 chemos and 7 rads now, and I can tell pretty much some saliva loss and taste reduction.
I am still eating everything and haven't lost weight, yet...
I asked them if I could mow my yard Saturday after getting the Peg Friday, they said perhaps Sunday would be better?
I have friends from Church that want to help mow (1.4 acres) but I told them I think I can do this One more time and I will most likely call them next week... Still working and going to treatments but then less than 2 weeks out.
I am still lurking at this great site and reading up on things, it is a blessing!
Mickey

Mickey, sounds like you are doing very well so far. Keep up the good nutrition and hydration and you will get thru this alot easier. Every single day take in at least 2500 calories and 48 oz of water. If you can get more in thats even better.

You may not feel like doing the yard for a few days. I hope you feel up to it but you must be careful once you have the port and peg tube. No heavy lifting, at least keep it to under 20/25 pounds. If you have a volunteer to mow this week it may be a good plan to take them up on it since its so close to your surgery.

You are doing the right thing by sticking with us. We will get you thru this. Im happy to see you have friends lined up who are willing to help you. There may come a time when driving to treatments gets to be too much. I quit driving when I was around the 2 week point. If taking pain meds it may not be get behind the wheel.

If you dont have it already, ask about some prescription cream for your neck. After you get finished with your treatment you should be dabbing the thick cream on to help keep your skin from getting sores. Dont rub it in, just pat it on. Many have used aquaphor which is over the counter, I used prescription beta-val cream. There are many kinds you can use.

Make sure even with the tube you still swallow water every single day. Also flush the tube a couple times per day. If you need pointers please ask, I can help you. I have lots of tricks to help you adjust to the liquid formula. Usually stomach or digestion problems can be solved by slowing it down and watering it down. If that doesnt work, there are hundreds of different prescription formulas on the market ask your doc for a different one.

If you havent done so already work on exercising your jaw muscles too. Do the 7-7-7 exercises. Stretch your mouth open as wide as you can and hold it for 7 seconds, repeat 7 times and do 7 sessions.

Hope I didnt overload you with helpful info. Best wishes with your surgery tomorrow!

Well Got the Peg and Port. The peg site is a little sore and I can tell I won't be mowing the yard tomorrow... maybe Monday..

I almost talked myself out of the port, but I asked my Doc how many more chemos, he said 5, I went ahead and did it.

When We got home, there were two boxes of jevity 1.5 waiting on us. Since it was so late, I decided to just try water thru the tube today and they want me to start with just one can per day since I still can eat anything and drink normally. Once I start eating less they want me to build up to 6 to 7 cans per day.

Oops, when I decided to flush the tube the first time, I was freaking out a little because it just would not go down the tube, I said, first time and the thing is clogged. When I disconnected the syringe, I noticed I did NOT pull the cover off from the tip.
I removed the tip cover and the flush went fine.

The tube site is clean, changed the bandage. Took 1/2 can this am, and 1/2 this pm, flushed..

I thought they were going to put the tube a little to the left of mid-line on the abdomen, I don't know why I thought that. The only thing that worries me (a little) is that I have a hernia about in the exact same place. I think the tube is above it, but not much..

It is more sore than I thought it would be, but I have a few pain meds and that seems to help, and it only has been 24 hours... Hope it feel better tomorrow...

Glad to hear you are practicing with your tube. It does take alot of trial and error to get the hang of using it. Did you get a pump? I found it easiest to set up a bag of formula and let it run overnight while I am sleeping. Even with having a feeding tube make sure you always swallow something everyday, even if its only a few sips of water.

It can take a couple days to feel better after getting the peg and port. Take it easy and you should feel better in a couple days.

Thanks Christine, very comforting words. My wife rubbed my back and I feel a lot better.

I asked about a pump, but the nutritionist said I might not need it as she wanted me to do 2 cans in the morning, 2 at lunch and 2 at dinner and one before bed. But if I need it they have no problem with that.

I timed the first 2 oz. using gravity only it took 8 mins. Kinda slow I thought but the water flush went very fast.

Guess I will take it easy.
Get to shower tomorrow and take the port bandage off.

Chin up!

When you do your feedings sit in a chair and stay seated for a little while after you do the feeding. This will help make it easier to tolerate.

Stick with us and you will get thru this. It will get better, everything takes time. The better your nutrition and hydration the easier this will be.

Mickey,

Also keep in mind that some PEG users end up becoming lifetime dependent on the PEG because their muscles forget how to swallow. My RO at Moffitt told me 5 years ago they experienced a 30% lifetime dependency rate for H & N patients using a PEG. Point is you must continue to swallow each and every day so use the PEG if you have to but don't let those muscles go to waste.

Thanks for the tips... My nutritionist said that if I haven't lost weight I could hold up on the 1 can a day until I start to notice I am eating less and/or lose weight. still hovering around 198. Still use water to clear it up and keep it free, every day.
Stretching the jaw
Drinking water, using the mouth rinse... (1 teasp. salt 1 soda 1 quart water)
Gums at the teeth line getting a little sore, I think it is too much fluoride in the trays....could be the RAD TX...

26 Rad to go... 4 chemos to go.

Thanks for all you guys do, God Bless You!

EAT EAT EAT AND EAT some more. EAT till you drop. EAT while you can. ENJOY your favorite foods NOW as long as you can. Your nutritionist is an idiot and probably has ZERO experience with OC patients because very soon you will loose your taste and your desire to eat and then the pain comes and then the feeding tube starts and more pain and more side effects and then the weight loss so enjoy your somewhat normal state before this Tx takes control.