Hello all,
I just found this site this weekend. I am a shy person so it is hard for me to open up to people I do not know but I thought hey we all are going through some what of the same thing. And that we need to support each other. I mean when I have told people what I have they just asume I am a smoker but no I am not never have been, but even if it is still a sad state to be in. Thank God I have my family they have been great and my husband has been a God send. I have tongue cancer and have had 3 surgery's and now I am starting my radiation. Today was my first day. I was hoping to get some feed back on what to expect and what might help me along the way?
Like taking care of my skin and how long til my throat gets all irritated.I would like to hear any advice you are willing to share.
thank you,
mbt
P.S.REMEMBER TO KEEP THE FAITH -FOR IT WILL TAKE YOU THROUGH IT ALL

Hi, Welcome mbt.

My husband Andy does not smoke either. He has tongue cancer also. He had surgery and has had one chemo and 5 radiation treatments. His taste buds are gone already. His skin is fine so far. But 28 more to go + 2 more chemo's. Can I ask why 3 surgerys? HANG IN.

Jilly

HI,

Thank you for responding and sure you can ask. The first was a biopsy and to take the tumor, the second was after they said it was cancer and they took more of the tongue and some of the saliva glands and some of the lymphnods.
Well, as I was healing I noticed a bump we thought it was scare tissue but 2wks went by and it started hurting and I just knew at that time that it was back and sure enough there it was again so in I went again and now I am doing the radiation.Today was my first treatment and wow that mask makes me feel real confind.
please keep me updated on you husband and tell him and you to keep the faith
take care hope to hear from you again
mbt

REMEMBER TO KEEP THE FAITH -FOR IT WILL TAKE YOU THROUGH IT ALL

hi mbt
glad you found the site,as you say we are all going through the same thing.yes the mask does make you feel confined i dont know how folks who suffer with claustraphobia get on.make sure you keep your skin moisturised,i used aquaeas cream and the only place that was blistered and sore was behind my ears.others on here have used other products.make sure you use something mild like baby shampoo for your hair.i expect you have been given all the information on that though.i dont know how many sessions of radiotheraphy you will be having but good luck with the treatments.nice to meet you although i'm sorry that you find yourself in the same boat as the rest of us. love shirl xxx

Hi mbt,
Another none smoker here! It's just one of those things right?!
You do get used to the mask - mine was so tight i couldn't even blink! & i'd was left for lattice marks on my forhead and cheeks for some time afterwards. Thank goodness the treatment doesn't last that long though. Sometimes those 10/15minutes would seem like eternity. When the radigraphers leave the room and you're left alone with just your own thoughts. I tryed some visualisation techniques, imagining the radiotherapy waves burning the cancer cells.
With all your family and doctors around it's amazing you can still feel so lonely isn't it? Cuz when you're on that table you're alone. But now you've found us here you can share your worries here!
Watch that area behind your ears - like Shirl, i wasn't warned about that and it got quite sore.

Keep us posted.
Michelle

Hi mbt, sorry you have to join the forum but welcome now you're here. I got quite attached to my mask and still keep it in a cupboard, my wife's not so keen or it would be on display.
It's good that you've got support but never be afraid to ask for more. Good luck. Hagg.

Hagg...
I wanna do a paper mache of my face using my mask (which is in the wardrobe ) But Amir's having none of it!"!

Hi,
Thanks again to you all for your support We all need it!!Chelle you had Mentioned behind the ears nobody has mentioned that. what is your advice on that?yes my mask is tight to I have the webbing too I told my husband it was the new fad Yes it is a lonely time in there my mind goes wild but then I pull myself together thinking about my kids and family and having faith!! I have only been in 2 times now and at times I just want to say forget it cause of the things that I know are coming, but with you guys here giving my advice and support It is making it alot easier. my family is great but, you guys have been there and are so supportive I know that I will make it through this..Sorry if i sound a lil down don't mean too.
Shirl no one has told me about the shampoo and my scalp being affected?? why what is going to happen? see you guys are teaching me so much thank you. and as for claustraphobia yes I have a lil bit of that but I just keep telling myelf I have to do it it is soooooo hard. by the time I am done and they take the mask off I am sooo stressed that they are like are sure you are ok. They told me that the could give me a relaxer but I don't like the way they make me feel sooo i deal.
I hope to hear back from you guys to let me know about behind the ears and the hair. and yes I will keep you updated
hagg I know I will be like you in the end wanting to display my mask!! it becomes a part of you..
take care
mbt
REMEMBER TO KEEP THE FAITH -FOR IT WILL TAKE YOU THROUGH IT ALL

Chelle, I'd like to that with mine but Haze would freak out.
MBT, it certainly becomes part of you. Dont worry about sounding a little down, we've all been there. Hagg.

Hi,
Thanks Hagg I have been feeling a lil down lately I guess I've been on my own lil but talking with you guys and family is helping. again thanks to you all
Take care
mbt
REMEMBER TO KEEP THE FAITH -FOR IT WILL TAKE YOU THROUGH IT ALL

Hi Mbt, Sorry you had to come on here butthe best place to be when things not right.
The Radiotherapy I really try to forget , Had 36 sessions and after 1 week kept telling them it was not my mask far too tight as they screwed it down.
I do wish you well and keep appling the Aqua cream by the bucket full it helped me.
Where in the US are you/

cheers good luck, keep us posted

Paul

mbt,
i'm sure you must have been given something to help with the skin burns? Makesure you take it right behind your ear lobes and the back of yourneck. thats where the radiotherapy exits the body. 95% aloe vera gel is amazingly cooling. Dont use anything butter based.
My mum was prepared and got me a tub of the radiance skin gel which i began to apply about 10days prior treatment. Aswell as in the car there and in the car home. My skin was good despite how raw i was inside my mouth and such.

Hagg,
If i were able to make the walk this yr i'd make a model me with the mask especialy

Hi
thanks Paul for your support.I live in Tacoma, Washington (T- town)
yes I have been apply the cream to my face I probable shine I put so much
I was wondering if you all could give me some advice on working well doing radiation? (I work with the public)do you think I will be able to do it ?I would apperciate your in put thanks
take care
mbt
REMEMBER TO KEEP THE FAITH -FOR IT WILL TAKE YOU THROUGH IT ALL

If you can take some sick leave, then it would be better for you. I carried on studying one morning a week for the first few weeks, but was off work completely from the beginning of the radiotherapy. You will find that you get progressively more tired and need to rest as much as possible.

I found being driven there and back was helpful and was lucky enough to have a rota of volunteers.

Keep telling yourself, "It's only a few minutes. I can do this".

~"In all things, it is better to hope than to despair"


Good luck


Chris

Chelle, that'd be classic . I dont think I can make the walk this year either unfortunately or I'd do the same. Life's getting too busy, but I definately shouldn't moan about that .