At the beginning of the marathon

Hi Mandy

Sounds like we’re at a similar stage in our treatment/investigations. It’s a terrible shock isn’t it? I’m 61, had a tonsillectomy and panendoscopy on Tuesday (no teeth out though). I was discharged with difflam (anaesthetic spray), codeine and ibuprofen also taking paracetamol and it’s not been too bad. The thought of swallowing is worse than the actuality. I got lots of soups, yoghurts etc in anticipation but they actually recommend things like toast, chewing gum, pasta and pineapple. I had bangers and mash last night! Gargling with boiled salty water is good, also drinking fizzy drinks. I’m trying to eat as normally as possible- just about to tackle pizza! Good luck, hope it all goes well for you. 

Hi 

I’m sorry you have found yourself here.

I know we are speaking separately but wanted to reply to your post.

Sending hugs

Sharon xx

Hi Knitty

I hope I cope with the tonsillectomy as well as you have. They are not taking teeth at same time now, it’s going to be at a later date as  max fax were not available at the same time .However, after speaking to the great people on here I am going to challenge whether  it’s absolutely necessary!! 
good luck with your results.

Best wishes  xxxx

Hi everyone, just a quick update. Had the tonsillectomy, where they found the primary...both tonsils. I’ve had 8 teeth extracted.. not a pleasant experience!! Had Mike the mask made and had CT and MRI in mask for planning. It’s been a whirlwind of appointments and I’ve not even started treatment yet.  6 weeks radiotherapy and 6 chemo to start next Tuesday. 

Hi Mandy, it’s good that they’ve found the primary but a pity about the teeth. Still, better to be safe than sorry. Good luck with the treatment, if you feel up to it, it would be great to know how you get on. As I mentioned before, I’m a couple of weeks behind you in the process, currently waiting for my mask appointment but I will be having exactly the same chemo and radiotherapy combo. I’ll be thinking of you xxx

Just remembered waking up without 6 teeth :-( what a horrible horrible experience! I'm still annoyed now too, I should have said no to 2 lower molars, really miss them :-( O god 6 chemos! what a mare! I had 2 and they destroyed me, absolutely destroyed me. Some tips

1 - do not eat in the hospital, do not eat before chemo or during it, I made that mistake, was sick beyond recognition for 2 weeks at least after, had chicken sandwich, bad mistake, any thought of chicken sandwich even now makes me sick, last it out, try not to eat

2 - get your hands on lots of gelclair and start using it probably week 2 onwards from starting radio, radio burns everything out, geclair will definitely help sooth things down, i started using it few weeks after finishing RT, it helped a lot but I wish I started using it a lot sooner, definitely get that and start using it early, don't delay

3 - it'll be hard to eat / swallow / taste foods, probably starting towards end of week 3 of radio, so get fortisip shakes, they saved my life, drink them through a straw, i was going through 6-8 shakes a day for about 4 months! tried all other shakes, they're no good, fortisip is the best!

Feel free to reach out if you have any quesitons

Best wishes

I’ll second the gelclair. I had that from the end of the third week when the RT hit me and drove a nasogastric tube up my nose! I’d recommend Caphosol too if your doc will prescribe it. Some won’t 

Good luck Mandy for this week with the start of the battle!! You can do this

Well, here I am week 5 of treatment nearly complete. Chemo has wiped me out with bad reaction and only done 4 , due another next week but not going to have it so will have done 4/6 chemo. Radiotherapy now taking its toll with cocodomol and oramorph for pain relief. Neck redness not too bad. Feeding though NG tube which was fitted week 4 has been a lifesaver, no more fighting to get the calories in. Dani, Hazel, Sharon, Lindsay, Anita, Carol, Paul and all the others that have given advice...I owe you from the bottom of my heart.. your advice is invaluable... the stuff they don’t tell you in hospital ..and your kindness immeasurable. 
I reckon I’m getting to the sharp end of the treatment now, so will keep you updated when I can. To anyone just starting on this treatment, take advice from all the lovely people on here that have come out of the other side, there is light at the end of the tunnel

Mandy, thank you. You are the perfect patient who does what she's told ;) 

Seriously, you are doing brilliantly on the treatment home stretch with Christmas dinner in sight!

Keep going xxx