Hi Lynn Thank you agree tepid water isn’t the new soda water ,we should open a yuppie bar !!!!! Selling tepid water !!!! Charge a fortune and make ourselves rich , will have to ask. At home to join us and Paula !

Am on chemotherapy ward as I type  needing a drink but got to wait for tea lady as my water is now too cold !!!!!!!

hazel x 

Hello everyone! 

My name is Veronika, i’m 29, from Kyiv and I was diagnosed with SCC of tonsil (T1N1M0) this April. And even now, after 5th chemo still shocked and can't believe it's really happened(.

Now I’m after 5 rounds of Taxol/Carbo (Paclitaxel + Carboplatin) and looking for a good radiation treatment, thinking of Germany or Turkey (cause don't trust in radiation treatment here). 

I’m really scared because of numbers of fractions (I need 33-35 with 3-4 cisplatin as my Dr says). Guys, I’m really happy I found someone who can understand me and can give really great advices

Try not to be too scared, I know that's easy to say, your cancer sounds early stages, is it HPV positive, I would suspect from your age that it is? Your hardest decision would appear to be where to go for treatment! I would think Germany but add I have not lived in Europe for many years I am not sure. Statistically I would think Germany would be more up to date and current with treatment. Most people you meet on this site have been through 30-35 radiation sessions and it does seem to be the standard world treatment for this type of cancer. Google world care standards for radiation therapy and see who comes highest up the list where you can go.

I wish you lots of luck and hope you find a centre that you feel confident about.

Paula

Hi hazel how's it going, what stage are you at? Are you about finished or completely done with treatment? ive been a bit self focused of late and lost track! 

Tepid water is still my go to drink for months post. Last week I had two glasses of wine but have two new ulcers to show for it!! I have total dry mouth and think the tissues are just too fragile to cope with anything acidic... I'm so sad. 

Sorry I haven't been around much... Paula..xx

Hi Vatch, 

I was wondering are you private messaging John just wondered how he is haven't seen him in here for a while? 

How are you? 

I'm doing ok, for months post treatment now, still virtually no taste I think it's a goner! Dr thinks so too but in holding onto a little hope....

Still getting small mouth ulcers that seem to heal in about five to ten days, just a result of dry mouth I think? Did that happen to you? The ulcers I mean? My dry mouth is total, how is yours? 

Still with the questions! Lol

Hope this finds you well.....

Paula...xxx

Hi Paula 

i have 9 more radiotherapy sessions yeah yeah plus poss one more chemotherapy session 

I have a blog 

www.radioactiveraz.wordpress.com

my neck is sore got radiation burns always thought I would as I have sensitive skin. But re your dry mouth I have read it can take up to 2 years .

so don’t give up just yet biotene dry mouth wash is supposed to be very good.

i still have some saliva on left side as all cancevin right tonsil area so left side just getting slight blasts .

sat drinking a glass of bovril at minute haven’t had one since I was a child at swimming baths ! Still struggling with water but had a nasal feeding tube fitted last week me n hubby nearly murdered each other all over a boiled egg !,,, so at least pressure over food is less.

try the mouth ulcer company online they have lots of different stuff and will post worldwide

take care

dont dispair

hazel xx

Thanks hazel, glad you are so closed to being done. Just be prepared to baton  down the hatches at the end. The feeding tube will be very helpful! Mine failed miserably as they stick it through my liver as was abdominal not nasal so had to go without and I had bilateral rad so I'm hoping yours will be better, intact I'm sure it will!!! 

I will look up your blog and the mouth ulcer company! 

Cheers

Take care be thinking of you..xxxxxx

Hi Paula

i am certainly prepared for the next 4/6 weeks of hell after reading everyone’s posts and vatchs blog . Don’t know aboutbin NZ but here in ukmwe don’t get much advise some say 10days u may feel ill right ok think it wrong that we don’t get proper truthful as is even but hey ho that’s how it seems to be we have to support each other . Like you had lynn I’ve got a great girl in Middlesex nikki whomis suffering  she vomits constantly hercdrs say get over it !!

my consultant is lovely Andy I can ask him anything 

enjoybthe blog

Take care Hazel x

I was sick for four weeks after... Just hibernated..xxx