Hi all,

I had my 4th partial glossectomy on 2/11. Usually by this time I'm back to my old self. I don't know if I was lucky before but I'm still feeling awful and in a lot of pain. My tongue constantly burns. I have some pain medicine called Altram and that helps but makes me constipated, not to get too graphic. I'm feeling very frustrated and need some support. Do you think it's just taking longer because it's the 4th time? My wedding is less than 2 weeks away and I'm scared I will still feel this way then. Everyone keeps telling me this is supposed to be the best time of life but it's really hard to enjoy it right now.

Ray is so womderful but I no I'm no fun to be around right now and I feel bad.

Any thoughts, suggestions and wisdom would be appreciated.

Suzanne

I feel so bad for you. Im so sorry you are still feeling poorly. Make an appointment and see your doc, let them know you still feel lousy. Maybe a different pain med would be better.

Sometimes it just takes a while to bounce back from surgery. Rushing into getting back to work and running around planning your wedding are probably adding alot of stress. Try to rest and relax and you will feel better, but check with the doc.

Thank you Christine. You're going through so much yourself. I feel so upset and sad and that usually is not me. I feel like I need a hug!!!

Of course you are sad and upset, you are worried about all this having an impact on your special day. Who wouldnt be upset about that? Very soon is the day all little girls have dreamed of and it needs to be perfect. That alone is enough to stress you out.

Hope I helped, maybe even just a little. Call your doc and go see them, it will make you feel better.

I would give you a big hug if I was closer. I do plan on seeing you in May at the Bethlehem walk. I will give you a hug then and you can tell me all about the wedding. This whole thing will be a distant memory very soon

((((((((( BIG HUG ))))))))))

Thanks so much Christine....you are so sweet. I can't wait to meet in you May. Hopefully we will both doing better then.

You did help...a lot. You made me cry and I'm not crier!!!

((((((((((((((((((BIG HUG))))))))))))))))))

Suzanne, I would bet it hurts more because it's the 4th time. Mine burns all the time when i try to eat and sometime when i get arid dry mouth. Like christine says, get on your Dr fr something that will help you more and as for the constipation, I think that's just part of pain pills. Hers a hug from a dirty old man too, (((((((((((((((((((HUGGIN BIG TIME)))))))))))))))

Christine and Suzanne............I just gave each of you a big big hug..........Did you guys feel it ? I hope so. Love, Claudia

Suzanne...I know how important your wedding and your man are to you. It is written all over your posts!!! I am not sure about the pain and symptoms of your surgery but I can give some support and send out my very best vibes, great wishes and hugs!!!Please I know it seems repetitive but try to relax and seeing your doc couldn't hurt....Rest heal and soon you will be Mr & Mrs!!!

Hi Suzanne,

I am so sorry you are not feeling better. I am thinking of you! Just focus on your wedding day and your husband to be ! You will be fine by then and once you walk up that aisle, you will feel only happiness!

I am looking forward to meeting you at the Bethelem walk!

Take care of yourself!

Susan

Suzanne

Okay for you I will assume the risk of not being Charm but "Mister Seltzer water " (I'd prefer to just be associated with Seltzer like David with VHC and HPV )
Seriously although this is my first one, already my tongue burns and the Salt water rinse they gave me in the hospital made it worse. Something about the fizz in the Seltzer resonates with me and I picture it like in the TV commercials with little "scrubbing bubbles" scouring my tongue clean with no damage to tissue or stitches.
The key is to buy only single use cans no larger than 12 fl oz. Be sure not to get "tonic" water which is similarly packaged or the sugar flavored versions, - just plain old Seltzer. Pop one open, pour into glass and swish and spit. I have to use a syringe this time around. It can't hurt to try.
If that doesn't help then you have to go with the old punk song standard that came out just about when you were born: "Sex and Drugs and Rock n Roll" plus suppositories (better than any laxative)
Best wishes and fervent prayers heading your way

Soda water as we call it here in blighty is a good old ocf remedy.It helps to cut through the mucous and slime and when you drop a teaspoon of salt into it it helps the healing process without drying the mouth out to much.Rob swore by it,and used it about 4 times a day.when he couldn't have a beer in the evening because it burn't his mouth too much,he mixed soda water with white wine.(trust a drinker to adapt!!!).

Its unfortunate Suzanne that you are setting your benchmark on previous recoveries.I don't want to sound harsh sweetie but i think thats a little unrealsitic all things considered.Your body has been on the equivilant of a marine training assault course,and recovery is always going to belonger and harder the more punishment you have to endure.

You really do need to step back and relax and take time out.is there any chance that your medication could need changing.Sometimes the meds make you feel worse than the disease.

Getting married is an emotional time for everybody and for someone who has been through what you have, it will be trebally so.Let other people do as much as they can to give you a break,while you concentrate on getting well.Plenty of nutrition plenty of sleep perhaps something to help lift you mood.

take care honey you will make it down the aisle in style.

love liz

You are all so kind. Charm and Liz..I am going to try soda water today. I've never heard that before and I'm always willing to try something new. I did call my doctor yesterday and they should be calling me to make an appointment soon. Liz, you are right. I think I am being a bit unrealistic. I think sometimes I'm still denial. Like I don't want to admit what the surgery was for and I should be better asap. I guess I need to work on my patience.

EzJim...lol I don't picture you as a dirty old man!!! I love all hugs!! Claudia...thank you...you are so sweet.

Dianne...you're right....I do love my man!! It's a good thing since we're tying the knot!!

Love, Suzanne

I think I am going to get some Seltzer water today and try it. If it helps this mouth, I will place a star on both sides of Charms name.

Oooo...good idea. Charm and Liz will both gets stars!!