Dear Tracey Take one day at a time - or even one hour at a time! Like you I have the scars from ear to ear, plus lip to neck, frozen bottom lip and "pins and needles" in neck but, unlike you have been spared radiotherapy (up to now at least). Take whatever you need to get you through all this - it won't last forever. You will get lots of advice from those on here who have gone through radiotherapy and surely your doctors will provide you with all the help there is available. Get loads of sleep and tell yourself that each session is getting you through that "tunnel" and out the other end. Like you I also have a wonderful hubby called John - it's so hard on them but they do want to be in there with us - and we want to shield them from it! I guess if it was the other way around we would want to be sharing all the downs too. As Lena Martell sings "One Day at a Time" (so sing that song to yourself whilst it's all going on!!!) We're all with you. Love Brenda x

Hi Brenda

My day at the hospital lasted from 10.45 til 3.55 can you believe that!
Saw the consultant first he told me the treatment I have recieved (2 neck disections,both salivary gland removal & neck lymph nodes removed)is the first time he has peformed this on a patient with non-malignant tumours,because they are very reccurant and aggresive that in under 12 months they WILL be malignant He has never seen anything like it!
Oh well at least I am a challenge!
My speach problems are coming from my tongue because the right side is not working it has been damaged in the last surgery, so I have exercises which hopefully will help repair the damage.
I was then sent to see the top ENT consultant who deals with the voice in particular. He proceeded to put the endescope up my nose
but the good news was that my larynx was in good condition

My GP wants to see me again in 2 weeks to discuss the anti-depressants again, I am still unsure, but as they said at the hospital I am going to feel alot worse before I start to feel better, so as you say Brenda I will just take it one day at a time.

Love & Best Wishes
Tracey

Tracey, you hang in there little lady. There is just NO way that anything could happen to your beautiful voice....I am praying like crazy for you about this...Please know that you are nor alone, NEVER.....You have me.,,,Always,,Vicki Lynn

Hi vicki-lynn

How are you, not heard from you in a while.
I so hope your prayers work!
I am doing my exercises so much my face hurts, I must get this tongue moving.It is so frustrating.I am about to leave for my simulator appointment, dreading wearing this mask again, I didn't realise it would be so tight, when I had my fitting it was so tight that my jaw was throbbing with pain.It was only 11 days since my surgery and having this mask pressing on my wound was quite painful.

Please keep praying Vicki-Lynn and don't be a stranger, I hope everything is going well with you.
Love
Tracey

I have been on must just be missing you. So the surgery went well then. What all did they do to you. I must have missed that posting. How is the radiation going? Let me hear from you...ALways Vicki Lynn

They did another neck disection on the right side and removal of the lymph nodes and salivary gland so there is nothing left now and I have a scar from ear to ear.
I now have the problem most of you have with lack of saliva and constant dry mouth,and the problem trying to eat (soup is fine!)
Radiotherapy has been delayed again because of the hurried surgery. It will now begin in two weeks time, this delaying is really frustrating I was ready to go on the 6th but instead went to theatre!

Keep in touch
Love

Tracey

A bit of indulgence food that slides down - melt a Galaxy ice cream (or similar choc ice bar) in the micro for a few seconds, to melt the chocolate a bit then add a small pot of fromage frais. Yummy and full of calories!!! Love B x

Hi Tracy, the dry mouth is a killer, have you got the gel to plaster the gums with before bed, and loads of water to drink, I wake up with my tongue glued to the top of my mouth, the pain wakes you up.Re speach, and tongue, hope you haven't got too many mouth ulcers, as all the mouth washes are so painful, I used a Homeopathic remedy MYRRH ( like the three wises men) as a mouth wash, Ainsworth,36 new Cavendish Street London W1G 8UF tel 0207 935 5330.Just a few drops in water,Big Bear Hugs

I love galaxy ice-cream so this is my excuse to eat loads of it
My dentist has told me about the gel, Garance I just have to go and pick it up, does it work though? coz the sprays I have been given are useless

I have had a good day to-day felt really well
and everyone noticed how cheery I was which is good, I hate feeling down so it made a big difference, hope it keeps up.

Lots of love & smiles!
Tracey

Hi Tracey,
my solution to dry mouth problem is BIOTENE - an American mouthwash. It is very mild and contains no alcohol which is painful. It was recommended to me by my radiotherapy doctor. Another medicine is German produce - Aldiamed. I am sure you have got sth like this in England. Unfortunately I have got to use 'private import' strategies - my friends are great help here.
Keep on, Jola

Thanks Jola and welcome to our site, I will look into Biotene and see if we have it over here.

Love
Tracey

Hi Tracey, you can get Biotene oral gel from an independant chemist, & if it works for you, it can be prescribed for you.
There is also Biotene toothpaste & mouthwash.

Which Hospital are you having your treatment?

Thanks for the info. Fran

I am having my treatment at the Beatson, Glasgow Western.
Where are you? its a pain because I live in Alloa so it is a bit of a trek everyday.

Love
Tracey

Tracey

i've got two bottles of the Biotene Mouthwash (not the gel) going free if you're interested.

See my post on General Chat

http://rdoc.org.uk/eve/forums?a=tpc&s=29910697&f=55510549&m=202109891

spouse

Thanks Spouse

I would be interested if you want to send me an e-mail direct we can sort out postage.
I appreciate the reply and I will try anything.

Love
Tracey