Hi Irene,

From my experience the PEG removal is nothing to worry about. My first one was held in by a disk about 5/8 of an inch in diameter.

The doctor did just yank it out , a bit of blood but no pain. Since then the following ones had a small deflatable baoon for retention.

They deflate it and the tube comes out easliy.  I now gave one called a button which has the baloon. This has no external tube, just

a port onto which a tube can be locked. I can swim or do almost anything with no problems.  I change this myself when necessary.

I have mine for life and apart from the drag of sitting there for about an hour three times a day it has no drawbacks.

Good luck.

Colin

Hi Irene, hope your parents etc all good and glad to hear you had a jig/drink and you are getting back to work. Met a few people who said pegs coming out were no probs.Im on week 2. Early days but little jog today, little bike ride yesterday. The first chemo last week doesn't seem to have hit me and had a curry last night but not complacent as early days. Still eating a lot so far! Discussed peg with Dr. She said as they were only zapping one side if I couldn't eat she would have me in the ward with a nasal tube to suppliment what I could get down with pain meds but does not seem for the peg in my case. Have been stocking up on softer foods high in cals. Who knew that a can of mac cheese has 400 cals or cream of chicken soup 300? Weight being maintained but at a push can lose a few stone although this would make me skinny? Trying to say as active as poss without overdoing it. Thinking of you Simon. There are people on CSN who have got through this really well and a guy who is just about to have surgery (US site Leo from Branchial thread used for research). They are a friendly bunch and may be able to give you some experience. Rooting for you.

Nicola you hit Paris yet! In waiting for your report! Colin where in France are you? I always imagine you on a terrace in the South somewhere! G.

Hi all

It's good to hear that you are all doing ok.

I hadn't realised you weren't having a peg tube! I only had treatment on one side but perhaps it depends on the particular spot the rt takes place.

Nicola, I hope you start to feel better soon. I too started to improve after 4 months after the treatment ended and by 6 months I felt pretty good. I suppose the fact that you are so slim may mean it will take a little longer.

My friends dad had mouth cancer 10 years ago and is still doing fine. However my friend asked me if I too had been told not to drink again! Eek! No one has ever said that to me nor to Irene with her Bacardi! Were any of you told that? I don't want to give up my vodka, lime and soda!!

Keep going all of you - it does get easier!

Debbie

X

Im sure if its well diluted its fine! It would only have the same Alcohol as a beer? Ive been told to keep away from neat spirits but even in treatment I can have the odd beer if I feel like it. Had one with my curry last night before my buds get frazzled!

If I get over there next year with family will drop you a line and shout you lunch! How do you cope with the heat after radiotherapy?

Hi Debbie,

No one told me not to drink.

As Guzzle mentioned, I think that neat spirits are best avoided (not that I could manage a neat spirit at the moment anyway). I have a couple of small beers most evenings and they slip down okay. I have had the odd whiskey or Jack Daniels and non-cold coke and that is fine too as long as it's not mixed too strong. The last few days have been really positive for me - mouth just a little sore and the usual issues with a lack of saliva but I feel more awake than I have since the treatment finished. I haven't had night-sweats for 5 days now and I really hoping that I've turned the corner. The mouth/facial consultant looked at my osteradioecrosis issue (dead bone in the jaw, apparently) today and said that it appears to be slowly resolving itself.

Take care everyone.

Simon XX 

Simon truly delighted for you my friend!That is excellent news. Im at the end week two. Been for lunch/bike ride. Been invited with family over to Munich for Xmas markets in December. What do you think based on your recovery? Doable? I know the worst is yet to come but all OK so far. Feeling ravenous all the time!  So glad you don't have to get your jaw fixed buddy. G.

That's great news, Simon. You do get used to the dry throat - I wake up in the night, have some water and am then ok. It hasn't got any worse.

You'll be fine by Christmas, Guzzle! You may struggle to get affordable travel insurance though!

Keep going !

Debbie

Hi Guzzle,

I agree with Debbie - based on my progress you should be fit enough for the trip by December. You might not be able to manage neat spirits or wine but you can make up for that with the beer!

Cheers (hic),

Simon.