Thank You all so much!!

Hi Fancyacuppa. Many of us on here have had what you are about to have, as we are all different  it affects us in different ways. There are many side effects but we don't get them all, some people get very few, but they are all manageable and your team will give you any pain killers that you need, make sure you tell your team of any issues you have along the way. It's great that you have a PEG it will be one less worry if you have trouble eating. The treatment is doable and you can and will do it. Let us know how you are getting on with it, if you have any questions, just ask someone will always help if they can. Great name by the way. All the best.

Regards Ray

I can't tell you how bad it will be as everyone is different and I did not progress to radio/chemo. 

I had surgery, just like you and was Cancer Unknown Primary (CUP).  They searched for 15 months for it having found it in a lymph node.  Eventually they found it in my tongue - only for it to disappear again!  Being CUP can be quite a stress.  There are a few of us on here so if you need to talk about that aspect just shout out.

Hi Fancyscuppa. Welcome to our small community group sorry you’ve round yourself on here. Ism 3 years post radiotherapy for tonsil cancer with several affected lymph nodes now am happily living my life. I was 61 when diagnosed if I can do it anyone can. It’s not easy snd yes it’s brutal at times but the alternative was worse. Take everything one day at a time don’t think k too far in advance the list of side effects is long we don’t get them all. Keep off dr google stick on here. Tell your team  any issues you may have you see them every day. 
Ask on here usually one of us can help. 
My blogs below it may help you theres links to other trusted sites as well .

Hazel 

Hi Fancyacuppa ( great name ) and a big welcome from me too. 
Im afraid your mouth and throat are going to get pretty painful. There’s no hiding that fact. Most of us end up on morphine or even fentanyl. The odd person seems to get by with only minor analgesia but not many. 
Effects are manageable but it will be a rough ride, don’t despair it ends and recovery starts  

HPV driven HNC has an excellent prognosis, in fact oncologists are fond of saying that if they were to have cancer that’s the one they would choose. I’d settle for cancer of my little toe  to be truthful  

I had base of tongue cancer, 30 days of radiotherapy and relied on my nasogastric tube for nine weeks yet here I am chasing three years and practically back to normal so if I can do it so can you.

Stay with us and ask any questions as they arise. There will be somebody with an answer for 

Both Hazel ( RadioactiveRaz and I have blogs you could look through linked at the bottom of our posts. Also MarkEL has an excellent diary here https://community.macmillan.org.uk/members/markel

Best wishes. 

Hi Fancyacuppa 

Sorry you are here, but the tips and support on here got me through it. As others have said, follow what your team advise. Do the exercises they give you to keep everything working as best as possible, don't be afraid to ask for more pain relief if needed and take it on time, really keep on top of mouth hygiene, and tell your team about any worries. 

Take care, Ronnie 

Thank you xx

Thanks xx

Hi hope treatment went ok the journey has started please be patient with yourself you can do this best wishes   

Hi as others have said it impacts everyone differently

..I had all the usual mouth taste and swallowing issue's...but in truth you adapt and manage the issues till they improve...and it will improve. Just try and maintain a positive outlook...as that really helps....I refused to hide away and. Even went down the pub even when I couldn't eat and drink. You don't know how strong you are until you have no other choice.

3 years on I live a normal life and enjoy every day.... you've got this 

1. Chas