hi i am new to all this i have had mri scan ,pet scan and ct scan my right tonsil removed and three biopsys the found the primary at the base of my tongue just above my voice box , i have just had the mask made and i am about to start 7 weeks of chemo and radition .. i see my surgeon tommorow to discuss the fitting of the peg , slightly panicing about peg insertion , and wondering how the treatment will go but it has been a great help reading other peoples problems . ps i am from england and being treated there hope you wont hold this against me ..bye for now

How great that you found this site! And welcome! There are lots of wonderful, compassionate and knowledgeable people here to help with whatever questions you have. There is a wealth of information on this site (starting with the home page) so you can put together whatever questions you have for the doctor. My son did not have a PEG but lots of people here have and if you do a search (from home page) for "PEG" you will get all kinds of encouraging information. Let us know what happens with the doctor tomorrow.

Allan,

Welcome to the site, but sorry you had to join our club.

I had a PEG tube during my radiation so if you have questions about the insertion, care, etc. let me know.

Set your mind to fight this and you will be surprised at how you can handle the treatments.

Fight hard and Keep in touch.
Jim

Hi Allan,

Welcome, Yes your Peg tube is very important. It will help you keep up with nutrition and fluid intake during treatment. They will show you how to use. Don't worry it's not that bad to have put in.

As far as treatment everyone is different. Some have gone through it with out to much trouble and others all kinds of side effect. I was one that had hard time with the Chemo. The radiation was OK, but there are side effects such as dry mouth, and mouth sores.

Try and just take one day at a time and ask your Doctor any and all questions. Feel free to post here if you can not find an answer by using the search at the top.

Take care
Diane

Welcome, Allan. We're here to help. No matter what your question is, I promise that there will be somebody here with the answer. And no question is too small or too large to ask. This is a caring, safe place.

Welcome Allan,

Sorry you are here, but glad you found this board. As the folks above have indicated ask anything of us and I'm sure you'll get an answer. Just keep in mind the treatment effects all of us differently and it's amazing to see that some folks barely suffered while others had very serious side effects.

Where abouts in England are you from?

Tim

Hi Alan

This is a wonderful site and will help you though your journey. My husband is only 3 rad treatments from being done. This site has help me to know what to watch for and when to talk with the doctor about things.

Marvin had a peg put in also and it has been a live saver for him. We use it for all of his nutrition right now and even for his daily med.
It took us a few tries to get the timing down of putting in the food but once we figured it out its been easy. The trick was for us not to put it in to fast. Marvin had to go though my putting it in to fast and then it came back up. So slow and easy is the best. Make sure to get enough water, food and rest though this.

We also have a stronger prayer group. If I can help you just let me know. There are alot of people on here with good wisdom on getting though this. You will be in my thoughts and prayers as you start your journey.

Hi Allan,

We hate to see you here but as long as you are you might as well settle in and keep this site close to your side. I did not even find it until I was a month out of Tx and only wish I had known about it earlier.

I was close to where you are now just about a year ago, also with base of tongue, right side, Stage III/IV. I also had a PEG installed and even though I rejected the thought I was told that I had no choice if I wanted to be treated at Emory Univ. Hospital in Atlanta. The tube was a royal pain in the "arse" but it didn't take me long to find that it was necessary. Trying to eat by mouth starting around the 3rd or 4th week of treatment was like trying to eat through a garden hose. The biggest problem with it in my case was simply keeping the darned thing taped up to my stomach and chest area. I went through a lot of adhesive tape and eventually pulled all hair off stomach and chest from the tape. My tube was removed almost 8 months ago and I still have what looks like a small navel to go along with my real one. Acutally, it looks like a healed small caliber gunshot wound but and is one of the battle scars I will always have to be a reminder of this horrible disease.

Sit back, relax and be ready to accept whatever they throw at you to attack this monster. It is somewhat of a dark journey and it seems as though it affects everyone differently. The best part is that it's over before you know it!

Check in often and keep us updated on your progress as well as any questions or concerns.

Bill D.

Hi Allan from one brit to another
Rob and i live in Grayshott in Hampshire and attend The Royal Surrey Hospital in Guildford and the wonderful St Lukes Cancer Centre that is attached to it.Like me you will find differences in treatment and medication between America and England but feel free to E-mail me if you have any USA/UK questions i might be able to help you with.I sourced all the biotene dry mouth care products on line and got them delivered to the house in 24 hours.My single best buy was aqueos cream for his face and neck which to date has stopped his skin breaking down,and is readily available from any pharmacy for very little money.We also found that the recommended baking soda and salt mouthwashes were better than any commercial product we found.
Rob had his PEG fitted in hospital but only after two weeks when he hadnt eaten for three weeks ,and got so he couldn't drink either.I dont think they fit PEGS in the UK before treatment as they do in the USA unless they know that you will definately be unable to take fluids orally post surgery and of course you are having chemo as well which Robin didn't.Rob didn't remember a thing about having his PEG fitted,and it has been no problem to manage since .
All feeding products and syringes are delivered monthly to the house and are covered by NHS prescriptions,so if you dont have an exemption certificate get a prepayment certificate straight away.You can apply and pay for this online.I got Rob one and it cost

fantastic thanks everyone for your support this is just a quick reply its 1500 hours friday the 13th i am just going to see my cosultant for the next step in the treatment ,hope the 13th is luckey for me bye for now Allan

Hi Allan,
13 has always been my lucky number. May it be yours too. Good luck in your treatment and YELL when you need help.

Take care,
Eileen

hi again back from the consultent my cancer is squamish cell at the base of my tongue just above the voice box they have said i have 7 weeks of radition starting 30th april and my chemo starts 23rd of april they have not made up ther minds when i have my peg fitted i have been told not to take this lightly as it will kill me within 3 years ( happy people these surgeons) and i have been told if my lymph glands donot go down during treatment i will have surgery about august time to remove them if i respond to the treatment , i do not know if this info is helping anyone else but it is helping me i can keep any one posted if they want but as i am new to all this do i follow on this forom or start a new one ? can any one help , Allan

sorry still new to this i live in barrow upon soar in leicestershire 6 years now before that the isle of man ,cancer stage three , very heavy drinker steady drinking through the week and binge at weekends also smoke 20 a day now it looks like i must pay the ferryman since i have been told the news i have not had a smoke for 2 weeks and have barley touched a drink ( i know horse ,stable door and bolted springs to mind but its never to late ) to be truthful i am finding it as hard with the smoking and drinking as it is coming to terms with the cancer , I'm rambling so bye for now , Allan

Allan
No need to apologize...we were all "new" to this at one point.

The drinking thing I have no issue with. I avoid it one day at a time, and have for nearly two decades. The smoking, I've been a non smoker since June 5, 2006; the day I had surgery.

It is still tough on occasion, but it is worth it on both counts. You will find a world of help here with the cancer issues (and there will be a lot of them).

For the drinking...don't do it alone. The quitting part, I mean. AA is an amazing group, and they can help you too. If you want to send me a private message, click on the 3rd icon on the top of this post. Hang in there...you'll get through this
Wayne

Hi, Allen,If we were sitting together in your favorite pub and having a conversation, I would simply tell athis. "Today is the first day of the rest of your life- good circumstances or bad- make of it what you can and will". Go forward from here - backward gets you nowhere. Best wishes. Amy in the Ozarks