Hi everyone. Paul had his peg fitted on Thursday. Has to go to Barts next week for final mask check and some blood tests then all kicks of Monday 10th. Sandra cooked xmas dinner for all the family last Sunday and they all had a lovely time. Think he is definately ahead of the game.

L o L

Joan xxx

Dear Joan,
I have been on purely peg feed for eight years now and now cannot even remember what is was like when I was eating orally as everyone else. One of the reasons I adapted pretty well was because of the diet I am given which is not excatly as what the doctors or hospitals advise. I started off on that ensure bit but the reflux was so bad, I just could not even think about having it.
My mother and wife put their heads to gether and decided to give me the same food everyone else at home were having - only difference being my food was pureed really well with the help of either water or milk but yet remained full of all the vitamins and more. Whenever, I get the urge to eat orally, I do so. I get whatevery I want - say a burger or a pizza etc. and just chew it until is no longer tasty and then just bin it into the dustbin that I have kept only for this purpose. The taste buds get their fill and the food fills my stomach and keeping the same in mind - I got back all the weight I had lost. I even reched a point where the doctors asked me to reduce.
Joan, everyone has their own attitude towards the upkeep of both the peg and the tracheostomy tube/button. I used to be very careful initially and follow the instructions very carefully. I would never let water touch the area - but just clean it with betadine etc. I found that even doing so much I would get infections and so I decided to forget everything and get on with life as if the peg or the stoma was just a part of the body and began taking showers withbothering to cover either of them and well - eight years down the line - nothing serious has ever happened. The most serious thing that happened was when a few months ago the tube (my second one) decided to deflate and out it jumped and I had to go all over to find a doctor to refit a new one.

I am just mentioning this not because I feel all the mantainence details the hospitals and doctors recommend are wrong. Its just the way one looks at things and as you say Paul is ahead of the game. Just thought it would come of use sometime and wish Paul all the very best with his new "addition" as it will be very beneficial for him. On that issue I have no doubts.

Take care,
Warm regards,
Ananth

Hi Joan andd Paul, just read Anaths reply, couldn't agree more, you become adapted to everything to aid recovery.

I just found it challenging not to spill the Ensure liquid everywhere, they gave me such a small bore 50ml syringe, six times perday. After we didn't need so much water, to reduce the viscosity, so it would sink in. Three months after treatment, I can swallow an Ensure in one go.

Take care,

Its a journey,
Nigel

Thanks for replys. Bit of a set back as peg tube badly infected. Had a job to get the tube in as Pauls stomach muscles very strong so had to give him a General part way through. Was fine until Saturday, then surrounding area very red. Should have gone back straight away but was really loathe to go through casualty as wait at local hospital usually horrendously long. Went back on Monday and fitted with cannula (? spelling) for IV antibiotics. Backwards and forwards since for doses. Cannula removed yesterday afternoon, continuing AB by mouth now. Off to Barts today for mask check and kidney function checks. Still not sure whether kidney tests are for Chemo or IMRT. Wish they would give out some leaflets or some information about stuff as just leaves you wondering. All starts Monday, roll on christmas eve.

On a lighter note. Had a lovely weekend. Friends cooked a meal Saturday evening - we didn't stay too late as Paul was tired (and infected!). Paul and Sandra stayed the night. Had a little drive out Sunday morning, then both Pauls went to the pub while we cooked Sunday lunch. Was a nice weekend, Sandra had day and a bit away from cooking, visitors and the phones. Think that was nice for her.

L o L

Joan xxx

I had terrible problems with my peg and loathed it at first - but it was needed as that was the only way I could eat for 4 months. It righted itself eventually and there were 3 attempts to put it in!!!!! I got really upset as I thought it would go through my stomach coz I was too fat - then the Doctor pointed out a larger lady that they did manage it on. Ended up und general anesthetic in the end to get it in.

I am so pleased to be free of it now though as it was sore on and off throughout the time I had it. Now I just have a little scar!

Love Chloex

Dear Joan,

Its really sad when goes through all that pain of getting the peg inserted just to get the area around it infected. I had the same problem but was cleared up with some antibiotics and antiseptic cream and of betadine.

If the doctors feel that Paul has to be on peg feed - just for your information there is a new peg tube in the market.Its just a button which one closes when not in use and when you want to do so - just attach the tube part and viola! you got your tube. I am using this tube as of almost six months since my last peg popped out and its so comfortable that I hardly even feel it.
However, Joan - I have always found almost all those who have been fitted with peg tubes do get a certain amount of infection which does clear up. It also depends on the way the peg wall rests against the stomach. I used to always put a layer of smooth gauze to avoid the friction and found that the infection got okay and has never been that bad ever since.

Just thought I would bring it to your notice. Take care of Paul - am sure he will do alright.

Take care and lots of arm regards,
Ananth

Hi,

Definately hasn't been too good since peg fitted but has been determined to work. Was off Thursday, day it was fitted and Friday but Monday and yesterday was back at work popping back to hospital for AB top up. Don't think there was any discussion about type of peg and thought it was going to be Dr or surgeon who would do procedure but was a specialist nurse. Hopefully will settle down, had a lot of AB's so maybe that not making him feel too good. Have just heard first treatment starts on Monday a 2p.m. Will mention about peg you have Ananth, in case it becomes a nuisance. Don't know if available here or if he wants to be pulled about anymore at the moment.

Thanks will pass on messages.

L o L

Joan xxxx

Day one of radiotherapy for Paul. Pretty uneventful am glad to say. One down, 32 to go. Loads better now since peg infection getting better. We all had peg feeding instructions on Friday, apparently you can go on line and if you complete all of the on-line course, you end up with an ology. Can't wait to get that one!

L O L

Joan xx

Day 3 for radiotherapy, only 30 to go. Chemo day tomorrow, bit anxious about what to expect. Paul saw dietician today who was very helpful. Staff at Barts really nice. Praying it all continues. Peg settled down now.

L o L

Joan xx

Hi everyone,

First week under the belt. 5 radio's, daily dose, and first chemo yesterday. Sandra and I have shared the week to accompany Paul to Barts. Sandra did Monday and Wednesday, I did Tuesday and today, we both did chemo day yesterday as didn't know what to expect. Been a good week for Paul. We are all relieved to be getting on with it, especially Paul of course. He worked today and was absolutely fine, so hope this continues.
Speech threrapist has given him lots of mouth and tongue excercises, lots of advice and help coming now.

L O L

Joan

Hi Joan, I'm glad Paul's managing to get on with things while he's having his treatment. It's good you are all getting plenty of help and advice too. Hagg.

Hi Joan,

Great to be getting on with it and first week over. Reminded me of how I use to tick off the treatments daily on a post-it stuck on the wall.

Which cream/lotion are you using for Paul?

Best wishes to all

Ken

Hi Guys,

Paul ok, week two and counting. He wasn't too well yesterday, stomach pretty upset but didn't feel sick. Has decided to go up without minders this week as said there is no point in anyone going with him. Am so pleased he is able to do that for his sake. We can slip back into routine if need be. Kenny, Paul has been using radiance gel on his neck for about the last 4 weeks, his skin all looks fine at the moment. The radio girls checked out the ingredients and said it was fine to use. They had never heard of it before and are interested to see how it goes. Also the dentist made him up some trays which he fills up with a fluoride paste and puts them in his mouth for about 3 minutes daily. He then sleeps with the trays filled with a different paste that re-mineralises the enamel on his teeth. When he has finished his radiotherapy, he rinses his mouth with solution of Bicarb and salt, then uses a mouthwash that helps protect the soft tissue and slaps on the radiance gel. I guess we will know if it all helps as time goes on.

We are just doing our best.

L o L

Joan xx

Hi Everyone,

Paul over stomach upset but bit tetchy. Was quite upbeat until that happened, was surprised to feel so well initially after 1st chemo last Thursday. Saturday went out with friends to fish resturant, had prawns, oysters, crab etc. Sandra didn't think it was such a good idea, then I said it to, so both went in the dog house. He was ill all day Sunday, couldn't get off the loo apparently. Still dosen't look great and not sure if shellfish or chemo the culprit. He said today he has a very bitter, metal taste in his mouth. Does anyone know what if anything, will help that?

L o L

Joan xxx

Hi! Joan & Paul,
The "metal, Bitter taste" is the norm with R/T & Chemo and when I was having the teratment I was having problems with my eating and when I had the PEG fitted things did improve even though the having to put everything down the tube was frustrating and at times it used to give me the S*&ts, BUT I survived and kept my weight on.
So hang in there and I'll be thinking of you during your ordeal.
"Stay Strong"
TREV