Hello-I posted a few weeks ago about FIL who has been diagnosed with cancer of the mouth-under tongue and part of tongue-things have moved very fast-had MRI scan and CT scan-thankfully chest is clear-due to have peg tube inserted and op within the week. He is frightened of the tracheostomy afterwards.he is going to have reconstruction etc. I think he was shocked at the extent of the op. probem is-FIL is not a big man and has been told to fatten up over the next week. I got him some fortisip vegetable soups which he liked but Doc could not prescribe as not on FP10-only tomatoe and chicken which he does not like-has anyone got fortisip veg on FP10? (prescription) I managed to get them from where I work which a rep had left. Can someone tell me how his speech will be and whether it comes back quite quick? What help will he need at home when op is over and he is well enough to be discharged-he lives alone. This has all happened in the space of a few weeks. Must add we have had fantastic Consultants. Met the Macmillan Head and Neck nurse-Speech therapist. Quite scared about it all though as I know it is major operation. Thanks for reading and I will keep you all updated. Love to all x

Hi, I had a tongue reconstruction (and neck dissection) exactly a year ago. I'm also a naturally skinny guy, so was told to 'beef up' as much as possible before the op. If he likes Indian food, that's ideal - tons of calories and fat!

I had the flap to reconstruct my tongue taken from my abdomen, but others have it taken from the forearm. I had half my tongue (the whole right hand side) replaced.

Personally I found my speech was a lot quicker to recover than my ability to swallow and eat. It will depend a lot on the exact details of his operation. Certainly I could speak well enough to make myself mostly understood before I left hospital (I was in for just under 3 weeks).

I was able to look after myself at home on release from hospital - if he is on a PEG tube, all his supplies etc should be delivered. Also a district nurse will probably come and visit him once a week or so. I just used to text if I needed anything, I was fortunate to have friends & family living nearby.

Good luck, and hope all goes well with his op.

John

Hi John

Three weeks? I feel like I got brushoff compared to that. My hemiglossectomy et c were on a Friday and I was back home the following Thursday. Should I take it personally?

quote:

Originally posted by Julia:
Hi John

Three weeks? I feel like I got brushoff compared to that. My hemiglossectomy et c were on a Friday and I was back home the following Thursday. Should I take it personally?

LOL Julia, perhaps you're just made of stronger stuff than I am

Initially they said two weeks, but it wound up being a few days more than that - I think because I was unable to swallow properly at that point, and they wanted to do a swallow test/video fluoroscopy before they let me leave. My tumour went right back to the base of the tongue, which made the op and subsequent recovery more complicated so they said.

Minimum of two weeks seemed to be standard though in Scotland at least.

You can buy a product called build up from the chemist which might help

I used Maxijule (prescription) in the early days and it seemed to help quite a bit. It's a tasteless (ish) powder that you sprinkle in drinks and food. I left hospital after 4 days but I didn't have a problem with eating/swallowing. Hagg.

Thanksfor al your replies-wil keep you updated-FIL very nervous now x

FIL operation booked for Friday 14th March-having peg tube fitted on 10th........nervous

He'll be fine this is the easy bit so just relax and think positive.

love liz

Dear Ebony,
Though I did not have tongue cancer, I still have a peg and its been in use for the last eight years as I have not been able to eat or drink orally since this period. I also have a tracheostomy which ,however, the doctors were careful enough to keep it open with a silicon rtoma button. As far as peg feed is concerned - everyone has different opinions, In my case I eat everything - even pizzas pureed down with milk or butter.I keep my taste buds alive by chewing on all the goodies and then binning them. I do everything a normal person can do and as far as speech goes, I am not to sure but I was able to talk by putting my thumb to block the stoma and though it felt odd at that time - with passage of time and creativeness I have hands free talk with a very normal voice.
Do ask your doctor every question you have doubts on regardless if you think if its a small issue. Its better to understand everything rather then be at a loss later.
Love,
Ananth

Thankyou everyone-Peg tube inserted ok-out of hospital for the night -back in tomorrow and op Friday-i may be posting under wrong heading? he is in quite good spirits-Im amazed as FIL was not going to say anything about what was wrong with him-just suffer in silence!- thankfully that was not to be and now he has the best chance ever to survive this and enjoy more life yet!!

Hi John, Was that painful having them take it from your abdomen rather than your forearm? My husband had his forearm. His G tube is really hurting his stomach. Did you have chemo or rad? You must feel so good having one year behind you. We can't wait.

take care,.

jilly

quote:

Originally posted by JohnD:
Hi, I had a tongue reconstruction (and neck dissection) exactly a year ago. I'm also a naturally skinny guy, so was told to 'beef up' as much as possible before the op. If he likes Indian food, that's ideal - tons of calories and fat!

I had the flap to reconstruct my tongue taken from my abdomen, but others have it taken from the forearm. I had half my tongue (the whole right hand side) replaced.

Personally I found my speech was a lot quicker to recover than my ability to swallow and eat. It will depend a lot on the exact details of his operation. Certainly I could speak well enough to make myself mostly understood before I left hospital (I was in for just under 3 weeks).

I was able to look after myself at home on release from hospital - if he is on a PEG tube, all his supplies etc should be delivered. Also a district nurse will probably come and visit him once a week or so. I just used to text if I needed anything, I was fortunate to have friends & family living nearby.

Good luck, and hope all goes well with his op.

John

Morning Jilly, you say Hubby's G tube is hurting. Is this a new pain.? If so, he could have an infection. Please have it checked out. Fran.

Hi Jilly, thanks - I was a bit freaked when I saw the size of the incision on the abdomen, but it never really caused any pain thankfully.

I had what seems to be standard over here - 35 days of radiation treatment with some overnight chemo (cisplatin). In truth, it doesn't seem like a year since surgery, time has flown by - but I'm very pleased with the progress given where I started from. Having cancer has certainly taught me the virtue of patience and taking one day at a time!

How long has your husband had the tube in? My first tube was called a 'RIG' and settled down real quick. I had that replaced after a few months with the 'balloon' type which I found more prone to causing discomfort, although by that time I was beginning to wean myself off it anyway. If it doesn't settle down maybe you should see about getting it changed or adjusted, might just be the position it is in.

good luck,
John

quote:

Originally posted by jilly:
Hi John, Was that painful having them take it from your abdomen rather than your forearm? My husband had his forearm. His G tube is really hurting his stomach. Did you have chemo or rad? You must feel so good having one year behind you. We can't wait.

take care,.

jilly

Howdy
When Trevor had pain and difficulty using his PEG it was because it had shifted and was embedded sideways into his stomach. I'd get your husband to have his checked. With everything else that he has to deal with, the last thing he needs is hassles with his feeds.
Cheers
Deborah