Okay, the PEG tube is in, the radiation mask is made (it went well and wasn't an issue with him), the dentist gave him an extra stitch and so we are waiting for him to be cleared before we start. They will speak to the hemo-onc about cisplatin-hearing loss concerns next week.
I realized this is all really happening when the pharmacist handed me a BOX of supplies and scripts...Like the kind you would use if you were moving house.
Also I've done my homework on everything ahead of time because I cope better with knowledge but I should have looked at a pic somewhere of a PEG tube because I was a little bit shocked by it..It's just so low tech looking and I didn't expect the dried blood around it, or the gastric juice. Reminded me of "Dune". I just do so much better when I know about these things and have bad dreams about them ahead of time and essentially just get over it.
Also I want to say hello and that I am so glad this site is here but deeply sad that we have to meet this way.

Hi Mariam

well looks like you are all set for the off.
good luck and safe journey.Remember we are all here to help.

Miriam,

The PEG site will get better. Hubby is 4 weeks from his placement and his belly looks healthy. Just make sure the area is cleaned daily with gauze and water (saline is OK too) especially under the button where all the gunk builds up. You will get used to it and it will not be tender in a couple of weeks.

Good luck with everything. Once treatment starts, some of your anxiety will be better..still there, but better.

Much luck, Deb

Hi Miriam, Jack found that warm showers softened the gunk and then he would just damp it off with a wet qtip. Eventually the skin was fine and he got used to it.

It was very surreal during treatment, some days felt like it was happening to someone else but then you get a jolt of reality like the prescriptions and you realize it's for real.

There's great information on this site and you will find it useful.
Good luck, JoAnne

Hi, Mariam, Here's a "some do-some don't" athought. John's Doc told him to always have a gauze drain pad between his skin and the peg button and change it frequently to protect his skin. [I have read that some folks here did not use the gauze. [it is a little square with a slit running toward the middle] Altho we all know it is natural to "stew over things", hopefuly you will express your worries and concerns here so that we may be able to head some of them off before you lose too much sleep or wrestle with those bad dreams. You, as the caregiver, will need to rest when you can. Amy in the Ozarks

Hello, Miriam. Amy is so right about the gauze square, cut to slip around the tube. I used that from from the beginning and never had any skin problems. I also did not have bleeding, and just little dampness until it healed a few days later. It looks worse than it is, and in my case was truly a lifeline. That is where I got food, water, and most importantly, much needed pain meds. Yes, it certainly is low tech, but it does a wonderful job. After a few days, the PEG will not be an issue. You can cross this one off your worry list.

Miriam,

My sister had the PEG tube in for 8 months and never had a problem with it. She kept it really clean, easy to do in the shower. Need to stay on top of it everyday. Also using a couple of ounces of pure cranberry juice or coke after the last feeding (before retiring for the evening), helps to keep the tube unplugged. My sister felt most comfortable with food and meds and liquids heated to body temperature. If it was too cool she would vomit. My best to your dad and you.

Nancy

Oh my goodness! Nancy just posted something very important. NEVER, EVER, under ANY circumstances introduce anything cold into the PEG! I am the Voice of Experience here. I did not vomit, but it hurt like the devil. I guess I had forgotten that because it only had to happen once for me to figure out that was a bad move on my part.

Hi everyone,
Week one is finished!
Dad has had Erbitux twice and radiation each day. I am surprised that he is already having pain/swallowing difficulty (even with water) but they said it's normal for the cells to swell when first getting treatment. He also is complaining about taste. He accepted his 1st nourishment thruogh the PEG on friday.
Thank you for the PEG advice, we put the gauze underneath etc thanks to this advice, and also did not put cold stuff into his tube (which I know I would have done).
Mariam

Hi, Miriam, now that youall have started the journey, here are a few more hints. Get a couple of bottles of unflavored Pedialyte [baby section in gro store] to keep on the pantry shelf. Anytime your Dad gets a little low on the amount of hydration he gets each day, put that down his peg. [someone will need to start charting all the ounces of peg food and all liquids he gets daily. And the water used to flush his peg tube or flush pain meds counts as hydration too]The Radiation Doc or his nutritionist should have given you a goal for him to meet daily in both areas. We also kept Welches grape juice, apple juice, etc. handy for liquids. Some things may burn his stomach so you may have to start experimenting. Let us know where we can help you with more ideas. Amy in the Ozarks