Hi Lynn, your path is almost eactly the same as mine, how exciting!....but i have to say i think my hole sounds bigger! lol, only joking. Mine is tonsil and soft pallet and you beat me with lymph nodes i only have one...

yes apparantly i have to have xrays of teeth etc and i have so many fillings i think they will pull my bloody teeth out just to add insult to injury and i just had a bridge done a couple of years ago that cost $5000 about 2500 pounds, dentistry expensive in NZ.

I am a nurse and have been doing lots of reading which can be grim enter the world of google cautiously if you havent already...the viral type of tumour is apparantly much more responsive to treatment and a positive viral element has been my only high since this thing started...it gives me much more hope , so try to think of it as a positive thing! 

yes I get the sad looks thing, being a nurse i keep encountering colleagues when im at the hospital and they all get that look and then cry! so now I think sod it and show them the hole in my mouth and that tends to get them moving along rather rapidly, sick sense of humour i think...lol..

on a more serious note I dont know if i said it before it makes me feel "diminished" in some way less myself, but I plan to kick that into touch very soon, I just want to wallow a little but longer...x

I entered the world of google to find out more and instantly regretted it so I am steering clear of it now as I found it to be rather negative and it scared me a lot , spent the whole of that night in tears after reading stuff on there! I’m dreading dentist too! I have a terrible fear of having my teeth out so fingers crossed it isn’t going to come to that! It will be so nice to have someone to swap stories with of our treatment and journey x

oh yes radiotherapy and chemo for me to, the tteatment from what i have raed seems quite standard , there dont seem to be any flash easy fix trials happening at the moment not that i have searched much , conventional means first..x

I’m wondering if they might operate and remove my lymph nodes ? I guess I’ll find out soon xx

sorry Lynn i flick about all over the place at the moment with different social media trying to keep family informed as i am so far from home and my typing gets crazy! sometimes i just cant be bothered to spell check...lol...i like Vatch's idea with his blog...but he is far wittier than me! have you read it ? Gamma Ray Gary its called , its sacry but funny and full of hope...x have to go walk my dogs now ..its day time here and you must be exhausted if you feel like i do so go and try to get some sleep...x

not sure Lynn , my Dr and another person I have spoken to who had this disease and is now 2 years clear said they dont they just radiate them...i like the idae of chopping stuff out but my Dr says NO!

Hi Vatch, 

Was carted back into hospital for 8 hours of drips - due to magnesium and other metallic deficiencies. There was a silver lining, however, as a friend of mine had a horse running, which my idle fingers backed at 25/1 via tablet. Got some strange looks  in chemo ward when involuntary whoop marked its victory.  Felt better afterwards, but pain has been getting steadily worse and am now interspersing oramorph with cocodamel. No sign of any solid-taking, but get the occasional craving for chips with salt and vinegar. Not happening anytime soon, I guess. Planned activity has been pruned to one hour a day in the summerhouse Sat/Sun/Mon for the annual RSPB birdwatch. 

Patience may be a virtue, but it is also a pain.

John

Hi...i get the burning in my ear all the time but not on my head so much... It's just the nerves being jangle...i now have a numb tongue which is interesting! It may get better as swelling changes or it may stop if the nerve stops working. It's all veto frustrating!