Hello there, especially to the people who where so kind to take an interest in my case of mouth cancer. Well appreciating some time has elapsed since my last log on, reasons I think are explained that no news was forthcoming so what can say and then going to hospital for surgery for just over two and a bit weeks, here is some news.

The operation and subsequent treatment went well, and I found that I felt quite OK for a week before matters took a turn for the worse. I gained an infection which made matters difficult, certainly in the respitatory sense, however things came to ahead once I started coughing and the wound in my neck opened up to gush out poisons, what a mess. Since Thursdays escapade, I had another drain fitted to my neck,removed before being discharged yesterday (22nd) and today, here I am writing.

How do I actually feel. In all honestly I feel great, I am briming with self confidence and am trying desperately to keep busy to accelerate the healing period.

Whats different then. Well I am on a PEG, this takes some getting used to and its the hunger and sight of food, quite common on Britsh telly, which sometimes gets to you. Then there is the new tongue. I was unfortunate to have 75%removed due to 6cm tumour, and this new tongue is constructed from a section taken from my thigh. There exists a lot of numbness, although I can communicate a lot better that everyone feared. (think its fair to say most people anyway!) My taste still exists from initial thoughts to date.

I have a month now to heal in prep for radio. During this time can any one who has undergone a silmilar operation shed any light on the following.

How long is a typical PEG for. How long before swelling of tongue recedes to a comfortable level.

I rekon I can speak 5/10. How long does an improvement take.

Summary of my operation and the subsequent 16days. These are only my inerpretations.

The most important point to take note of is a patient will have good days and bad days after such an operation. When balanced out this is simply the bodies recovery mechanism.

Positive outlook and enthusiasm are a major factor in healing.

Try, when truly are able, to keep as busy as you can reading, puzzles, music tele etc. This accelerates the time passed.

My list that kept me going.
1). COULD BE WORSE.
2). STARTING TO SWALLOW.
3). FRIENDS AND FAMILY SUPPORT.
4). TIME WILL HEAL.
5). NHS STAFF CONPETENCE.
6). SUMMER COMING.
7). CASE HISTORIES.

I will endevour to update regularly. In the meantime all the best to anyone about to embark on such an experience and to all the members of this site.

Nigel, I am so pleased you are doing just great. I don’t have any experience of op so can’t comment, no doubt there are others here who will be able to assist. All I would say is try to keep your strength and your weight up, you will need all your stamina to get you through r/t but you have exactly the right attitude, which will carry you through.

Good man! Keep it up.

Hi Nigel
I took speech lessond for about 4 months afterwards and found this helped.

They can do laser surgery later which they did to me to free up my tongue some 12Months later.
Did not have peg nasal tube was in hospital 7 weeks

Its frustrating the eating and talking but it does improve

Take care
Dave and Sue

Hi Nigel,
Great to hear you are feeling better.
When my wound broke down for the first time the gunge was horrendous and stank to high heaven. Even though you are feeling good, still take it easy. That level of infection takes it toll on the whole system so you need to make sure you get plenty of rest, espiecially with RT coming up.
I didn't complete my full session of RT due to tissue damage, the wound kept opening. It did affect me in different ways, although I'm sure that the members here who have had the full monty will be able to advise you better than me.
Speech wise, I had part of my jaw removed, one tonsil, my soft palate rearranged and a neck dissection. My tongue has been left intact but because of clamping it to one side during my op's, cutting on the floor of the mouth there is significant nerve damage/numbness and movement restriction. I had my initial op in Oct 06 and most of half of my tongue is still numb.
I'd say my speech is now about 6/10. I still go to the speech therapist, I follow a regime with the Ora-Light excercise tools (what I call my torture impliments!)and sing my head off (when there is no one around to hear me)(well it's better than talking to yourself!!ha ha)
Some days I sound OK, some not so great and some bloody awful. It's really easy for the progress you make to drop back again if you don't keep at it. I think of course that individuality comes in to it too, what surgery, healing abilities, other complications. Remember too that how you sound in your head is not how others hear us, you could very well sound better than you think!!!
As for the peg, ah hell, from the experience of a previous serious foodie, I've found mine torture at times but hell, I wouldn't be here today without it!! I still use mine 2/3 times a week, I can't quite manage to get enough grub into me to keep me going otherwise. I can put up with that though. I went back to college last September, go to the gym about three times a week and am generally feeling good. As a back up to being 'normal' I'm not complaining.
I don't know if I'll ever be able to manage without it but I'm not giving up on the idea. I've also another op coming up and in that case I'm glad I still have it incase I can't eat/drink again for a while. I absolutely hated the nasal tube I had for the first week after my initial op.
It all takes time, yeah it can be frustrating but you sound as if you are doing really well, well done and stick at it.
I've had a chat with Charly and I'm hoping to be able to meet up with you all when you come over for the wedding. We can burble at each other over a Guinness or two, or as you will be in Cork, the local brew of Murphys. Yum!
Keep us posted on your progress.
SusieR