Hi,unsure what to say, but have been wanting to join in after reading the jokes, as well as the advice. I have picked a picture that looks absolutley nothing like me but one I would have liked to have looked like before! I will be going for a chech up Friday so I will try to remember to ask exactly what I have had done in the correct terminology. I have had 2thirds of my tongue removed and at present struggling to take anything by mouth, I have to rely on peter the peg. But at least my lodger has been evicted. I may well need advice about eating, no maybe about it actually, I need advice that that will only come from people that have done it. Any offers?

Hello Elaine
Welcome aboard. You've obviously been checking us all out, so you know what you're letting yourself in for by coming onto the forum! You will get the truth, the whole truth and nothing but the truth from the members so ask away.
I'm glad that you have a PEG. So many people don't seem to get the option and I just don't understand that. Why make something harder for someone who is already having to deal with so much after surgery and with chemo and r/t. At least if you aren't up to eating you can maintain your nutrition with a PEG. There were times when Trevor was struggling so much that I actually gave him his 'meals'. Now, I couldn't have eaten it for him, could I? He would've been a total wreck without that PEG. Actually the r/t registrar at the time wasn't in favour of him having it and with a slap on Trevor's back, said 'a big, strong fella like you will be able to handle it'. Yeah well, I'd like that bloke to have a taste of 'handling it' and see if he doesn't change his patronising attitude a tad. Fortunately we had a very supportive, pro-active dietician who got it all arranged, and just in time too.
Enough rambling. I look forward to reading your progress Elaine. This forum is our life line. I hope you are able to find all the support you need (and I'm positive you will).
Cheers from Down Under
Deborah

Hi Elaine, I didn't need surgery, but because of the radiation treatments, I have been unable to eat and rely on my peg. I was one of those who told my Doc. at the beginning of treatment that I did not want to be on a peg. That attitude didn't last long though when I couldn't eat a thing and was dropping a lot of weight.

As Deb pointed out, this is a fantastic forum and you'll get honest answers from it's members. So welcome, even if it is a forum that none of us want to belong too, but are lucky to have.

Best of luck to you, Cricket

Hi Elaine, I didn't need a peg but there's plenty of people here who can help you on that one. I've had a lot of surgery, hyperbaric treatment and RTs. Sorry you had to join us but welcome anyhoo. Hagg.

hi elaine
welcome to the site,i too have a peg after having tongue cancer but i did not have surgery chemo and rt did the job.after nearly 2 yearssince treatment finished i am getting some taste buds back only savoury at present but i am eating a little bit of food but it's hard going.thank goodness for the peg.do you have any taste buds?my only advice is keep trying different things to eat.i can just tolerate spicy food now but only midly spiced as some things still burn.hopefully if you have a dietician they may be able to give you some ideas of what to eat.my aim now is to try and eat enough to get rid of my peg but it is so much better than the n.g tube i had before.good luck.love shirl xxx

Thank you all very much for replying so quickly to me. It was a lovely surprise when I tuned in. It makes a big difference to know that you care enough to respond and you don't feel so cut off.
I should have been at work this morning, it's my first week back, but the school is closed because of the snow.(I'm a school cook!)
I had my op August 12th 2008, recovered very well, it's only the eating that is slow. Very frustrating and it is the only thing that has got me down. I lost 3stone and half a tongue in about 3 weeks. I have handled it, like you have with humour. At least they didn't take that away from us.
I shall definetly be coming back for chat's and hear how you all cope. I am hoping to spend half term in Dartmouth, I always come home feeling great from there.
So TTFN love Elaine j

Hi Elaine

My picture looks absolutely nothing like me, either. I just liked it.

Congrats on making it this far.

I had an NG tube for a few weeks post op, so I'm not at all familiar with a peg. I didn't get much advice about eating after surgery, either, although I was told to tilt my head to the opposite side (Flappy the tongue flap is on the left, I had to tilt to the right; I must have looked like a puzzled dog) when I started using my mouth again.

As far as actual eating is concerned, I ate a lot of baby food--at least three per meal--and was single-handedly responsible for increased sales of Boost and Ensure in the state of Michigan. I also switched from cow milk to soy milk, and drank a lot of chai.

Even though it's been four years, my flap still senses things differently from my native tongue. At first, it felt like food was still on my tongue long after I'd swallowed it and cleaned my mouth.

One of the things I liked to do before cancer came along was to go a Mexican restaurant in my town for their monthly hot sauce tasting. As much as I'd like to do that now, I'd be too afraid of getting a chemical burn on my tongue. I still like spicy food, but I have to be really careful (although I do find the tingle on my flap not altogether unpleasant).

Go out and enjoy the snow! We have quite a bit here, too, but it's SOOOO cold (windchill in the negative teens F).

Hi Elaine, Welcome to the site, not a site I supposed you would choose but you can get real facts and answers on here by people been there done that
I had a peg for nearly 3 years and I was so glad of it in the early years and I could not eat at all just sip water.
But even when I was feeling a bit better it was a godsend when I was feeling bad and unable to face food.
I also lost alot of weight went down to 7st and could not understand why nobody else had this problem.
Well ask away on here and remember Dr J is there or you can private message members if you need advice.


Paul

Hi Elaine
Glad you found this site and are already finding it helpful. It was a godsend to me when I joined just over a year ago. I had about one third of my tongue removed, so not as much as you, and only needed a PEG for a couple of weeks. However I continued to lose weight over the next six months - something to do with eating a lot more slowly and carefully, I think. I lived on ice cream, soup and chocolate custard for a while.

Keep us in touch with how you are doing.

Love

Gwyn

Hello Elaine

You will find much information in the Recipes and Food Tips forum and previous posts about PEGS.

Best wishes
Vinod

I didn't put my picture up in case it frightened people off .

Dartmouth is really nice but at the moment I think you'd have trouble getting there. I really like it there too, stunning area. Keep your chin up Elaine. Hagg.

Hi everyone,
I have just returned from Derby hospital after my check up and MRI scan results. The scan has shown that my "lodger" has definetly buggered off and took all his belongings. I have NO cancer remaining in my mouth or neck. Apparently I had stage 4 cancer. I have to return for monthly checks and I have to have a videofluoroscopy on the 23rd Feb. I just thought you may like to know.
Dear Hagg, I'm sure you can't be that scary! Yes Dartmouth is beautiful even when it is cold and raining, which it is a lot. We are actually moored on Kingswear side of the river and have to have a dingy to get to the boat. We are on the council estate bit, can't afford the marina. We may go just for the weekend because I have to go on a course from work on the Thursday.
When I write on the site where do I go? Or do I just continue on this bit?
Thank you all for thinking of me. Elaine x

Wooh wooh, Congratulations on your eviction, things can only get better from now on!

Great news, Elaine. Congratulations!
Onwards and upwards
Deborah

I really like Kingswear, I love the houses overlooking Dartmouth but they're a tad over our budget even in these recession hit times. At least you would never get flooded though.

You can write in/on any topic you want Elaine. Hagg.