Hi Shaun , I am currently post treatment at the end of recovery week 6 . Your treatment plan is the same as mine was . I had left tonsil as the primary area and 3 areas of lymph’s requiring treatment on the left of neck , one of which that was prominent , early on through treatment the largest one shrank quickly followed by the other 2 , to physically see and feel these shrinking almost daily was a huge boost so I imagine this will be the same for you . Regarding pain relief I was and still take co cocdomol daily and some Oromorph only when required between co codomol , my worse pain was in the first 2 weeks post treatment . I was T2N2 and my consultant took one look in my mouth and said “ we can sort this , 6 weeks treatment , job done “ . 

Its a tough battle but you will be fine . There are so many helpful people like Hazel on this forum , all of them a great source of support and information . 

Best wishes , Peter 

You 

Thanks again to you all for taking time to reply, will post periodically to keep you updated.

Sorry one last question. I cant tell where neck lumps start and stop. Particularly my right neck has a hard lump but the surrounding tissue has recently become soft, swollen, and tender to touch. Did anyone have it similar, is the swollen tissue part of the lump or some sort of lymphodema. I’m sure will have it answered tomorrow but it’s scaring me now:)

Think it all varies person to person Shaun to be honest. Don't worry, some peopel have small lumps, some larger, some harder, some softer, they will sort it starting tomorrow, but worrying won't. 

it won't be lymphodema as you haven't started radiotherapy yet. Lymphodema is a side effect of radiotherapy nuking your lymph nodes that drain away fluid, leading to a swelling in the affected area. I asked to be referred to the lymphodema clinic after my treatment (as some swelling under chin); They said it will fade away over time, and gave me some exercises to do if I wanted to speed things up. 2nd appointment they said its now so minor we're signing you off. Nobody in my medical team seemed overly concerned about lymphodema, more of a minor side effect it seemd to me.

Hi Shaun

like markbsats everyone's lymph lumps are different some days mine was soft some days hard some days both. What the lymph nodes do is kind a waste disposal system catching the dead cancer cells and holding on to them. Likewise lymohidema doesn’t start until radiotherapy gets well on way sleep well tonight hold head high in morning. Today had lunch with 2 guys n wife’s whi went through treatment a year ago n niw we are well enough to eat out and laugh about our radiotherapy sessions  a year ago we were all in your boat wondering all the negative thoughts hazel 

Hi Shaun , Sorry for not writing sooner , lifes been a little hectic since hubbys diagnoses !.... anyway here whats been, happened & gone! "BRIEFLY"!! "could never tell you everything on here ! ... Hubby was diagnosed with stage 4 right sided tonsil cancer which had spread to the soft pallet & lymph nodes on both sides of his neck ... think that looks a bit like this : T4-N2-M0. .. Treatment was initailly 6 back teeth out , followed by peg tube being fitted prior to treatment "if your advised to have a peg ..please do so!".. it really is a life saver !! .. ok onto the chemo ... Hubby had to be admitted for his treatment  as he had 5 consecutive days with a two week gap followed by 5 more consecutive days ... bit harsh but hey he was still smiling through it all ... prior to radiotherapy he was admitted for one overnight chemo then as soon as it ended he was sent straight into the radiotherapy unit to get his first session done , from there on he attended radiotherapy daily for 30 days , two weeks before the end of the radiotherapy he had another chemo which was also overnight in the hospital ... he started getting pain 4 weeks into radiotherapy & swallowing became impossible by the end of the radio , unfortunetly he did get pnuemonia twice after the treatment had finished , this was due to him aspirating his feed from the peg as he just couldnt tolerate it being done overnight when he slept .. we tried propping him up & slowing the dose ! but it still happened ... we had to adjust everything & ended up bolus feeding the small fresubane bottles into his peg ... he lost 4 stone in weight  ... but hey nobody said it was gonna be easy !  ...its a hard journey & theres no hiding that fact!!.. things do go wrong & youll be tested to your limit!!...but its  so worth it when they tell you that your looking good & theres been a COMPLETE RESPONSE TO TREATMENT!!! :)))... so dig deep  ... you got this sh#t!! ...  take anything your offered Shaun ....theres no badges for being a hero when this guy comes to town!! ... keep strong .. cant say be positive cos I hated that saying lol ... last thing you feel deep down is positive!! ..but try !!! ...you got this!! .. sending lots of Cwtches!..."hugs! "

Also you can discuss with your Oncolgist which type of feeding tube will suit you best (for those newly diagnosed), PEG or RIG.

I had a RIG and it was fine, easy to use. This is put in direct throught your stomach not down your nose/throat.

Hi Cariad, thank you so much for taking the time to reply. It sounds like you’ve both been through so much but you have come out the other side and things now on the mend. Tomorrow marks half way through treatment for me and lets say no surprises so far :) mouth is already pretty sore but my oncologist is not shy with the pain control. No feeding tube yet so we’ll see how it goes. I’m certainly no hero and will take what’s offered to get through this. 

So glad your coping well so far Shaun , Yes its been a tough one & still a few hurdles to go but fingers crossed! itll all be ok soon ! .. sorry I couldnt reply earlier as we have bought a motorhome 6 weeks ago & have decided to just travel & enjoy ourselves so internets a bit naff on my phone ! ...we're home for today &  we're off  down to Amroth in the morning , got a nice little pitch besides the beach waiting for us !.. definitely enjoying the R&R after all this last year has thrown at us! ...sending you our best wishes !.. take care ! .. 

Hi ShaunW,

Hope your staying strong, I know it’s not easy, I'm in my 11th day recovery as I had it in the base of my tougne & in both lymth nodes so I had a PEG fitted then 4 all dayers of chemo & 6 weeks of radiotherapy. Believe it or not I have had more pain sense the end of my treatment that I did going through it & the one saying that is getting me through it is ‘it doesn’t last forever’. Good luck lovely & you got this x