At the beginning of the marathon

Hi Mandy

Sorry to hear about your diagnosis

Same here, p16+, right neck lymph node taken out, they didn't know where primary was so told me 4 tonsils have to be removed, got them taken out, then a week later was told primary was in base of my tongue. A lot, a lot of pain after the op, lasted just over 2 weeks, lost good 10 kg as I couldn't even swallow a tea spoon of water, couldn't eat :-( In prep for radio and chemo treatment also was told 8 teeth must be removed! 8! In the end they taken out 6, all wisdom teeth and 2 back lower molars :-( I'm only 35 y.o :-( Was super fit until this nightmare started, ran a lot, gym, football, saunas, was not expecting cancer! Went through therapy, 2 chemo and 30 radio. Weeks 4, 5 and 6 were painful, therapy ended by end of march this year. Feel free to reach out if you have any questions, happy to answer, there is a light at the end of this tunnel!

Best wishes

Hi Mandy. 
you’re right about the brick in the face bit. Must if us here were like just falling says perfectly fit and healthy till the doctors got hold of us. I don’t want to interfere with your consultants opinion but do ask if those teeth really need to come out. The rationale behind it is that if unhealthy teeth need to be extracted at some future date and your jaw circulation is compromised by RT it leaves you at a greater risk of osteoradionecrosis. The most recent research seems to suggest that if you are going to get jaw necrosis you get it whether you have teeth out or not. See if you can have a chat with a maxillofacial consultant. Just a thought. 
My MDT We’re perfectly amenable to leaving teeth in and mine are heavily restored. 
I did have to have one maxillary molar out subsequently and it was all quite uneventful. 
As for questions the most important maybe are regarding treatment. What is it? How long will it take and are there alternatives? 
Good luck with your surgery. Make sure you are armed with decent analgesia. Tonsillectomy in adults is pretty painful. 
PS you won’t get staging till your tonsils are biopsiedv 

I agree about the teeth chat, challenge it if you can, I had so many mixed opinions, one consultant said only 4 can come out (wisdom) and rest can stay, another consultant said 8 need to come out, then between them they somehow agreed on 6! Wisdom are fine to come out, miss my molars a lot though, uncomfortable chewing chewing gum for instance, or some foods, thinking of implants now but have to wait a bit, plus it's quite expensive!

Hi 

thanks for the info..all gratefully received. My CNS nurse phoned me today and max fax are not available at the same time so they are just taking my tonsils on Tuesday. Later date for teeth.. but I will definitely have a discussion beforehand to make sure it’s absolutely necessary. 
I’ve  stocked up on painkillers, ice pops, humidifier, soup and ice pack for my throat... hopefully I’m as prepared as I can be.

Hi

Ive already had my wisdom teeth out and the dentist then said I had a jaw like a boxer and had a difficult time with the extractions.. so I will definitely be challenging it if I can

thank you

Hi Mandy

paracetamol should see you through tonsillectomy but do ask them for a prescription for the higher strength Cocodomol. There’s no need to suffer. Anticipating a complete inability to brush my teeth during RT I bought a waterpick but I was pleasantly surprised that I managed to use an electric toothbrush with a sensitive head. 
There’s lots more advice once you know exactly what they are going to do to you. 

Hi Mandy 

can only echo what everyone else has said recently teeth extractions like Dani says press for answers quite often they do things routinely inwas kucky I had no extraction s it’s bad enough everything else going on having teeth out just seems a step too far so please question .I had amalgam fillings and still kept my teeth. Yes I was 61 never been an ill person was the fittest I had been in years and wham bam .After my biopsy I git by in paracetamols but do ask for the codine as well just to be prepared .Think you've ready my blog if you want to send a friend request please do.Dont stress it’s doable ,i has I have said many times  am a true wimp cry at a broken nail but I squared up to this it wasn’t beating me and to date almost 2 years post treatment and living my life .

Hazel xx

Thanks Hazel

its just good to get the views and help of people that have actually gone through it..I’m not sure anyone else understands fully. Part of a club that nobody really wants to join xxx

Thank you

Hi Mandy That’s so true ,my poor hubby must be fed up of me repeating I’ve got a dry mouth ! Lol. Baby steps is the way forward take it in bite size chunks don’t look too far ahead ,we are all different even though the diagnosis is similar we all react differently. 

Hazel x

Hi Mandy

As you know you and me are at exactly the same stage in this nightmare. Good luck with your tonsillectomy and let me know how you get on. I’ve got to keep self isolating for two weeks before I get my date for op. Just want to get this bit out of the way and pray the primary is in the tonsil. Best of luck x