Hearing and swallowing problems

Thanks Peter, I do hope so 

Elaine 

You’ll get through. Radiotherapy is pretty rough on your mouth and throat but your team will look after you. No need to be brave. Tell them how you feel every day at RT. Take your pain killers by the clock, keep hydrated and fed properly. Take each day one at a time and you’ll get through 

Thank you

Sounds like good advice. I must say the team do appear very supportive thankfully  Elaine 

Hi Elaine

I completely understand with what you write.  I had radiotherapy because it was recommended that I have it as my tumour was quite extensive and I still had a positive margin. For me it made sense to go ahead with it.

We make these tough decisions, and I have made a few over the years. It is so good you have done your research and now reached your decision. Well done as the more informed you are the better, though I know it is difficult with all info in abundance.  I am coming up to 13 years with Acc and one thing is once I make a  decision, I make it and don't look back. 

Hope you get your ear problem sorted out soon too. We are here to see you through this.

Best wishes

Nicky x

Hi Elaine yes once the ulcers start and the pain when trying to  swallow a sip of water. The mucosal lining of our mouth and throat. Then the fatigue if radiotherapy combine it all and it’s a vicious circle. Some get by with paracetamol not many but it’s been known. As we all say we are all different. But if you do need painkillers it’s best to keep on top of the pain instead of waiting for it ti hit. If yiu do that yiu never get on top of it. As my oncologist said cancers bad enough cancer and in pain no way xx

Hazel xx

Thanks Nicky 

gosh 13 years with ACC ! That’s fantastic and sounds very positive. The oncologist said can’t have radiotherapy twice in same place but there are other systemic drugs other than chemo they can use, should it return. Did your cancer recur in the same place at all in those 13 years? Hope it’s ok to ask?? Elaine 

Ok thanks, to be honest I still get a bit of discomfort and I take paracetamol and ibuprofen but doesn’t help really, don’t know why I keep taking them? Having said that the discomfort is more of a stretch discomfort rather than pain as such. I like oramorph but I get badly constipated despite masses of laxatives lol . But I’ll take your advice and when the soreness hits I’ll take whatever is suggested regularly 

thanks Hazel

Hi have you tried  laxiodo or movicol as they aren’t harsh like  laxatives it’s what I snd many others are prescribed when  on opiates. They are still softeners . At my worst I was in 8 x 30 mg co codomol and 40 mil if oramorph a day xx

one day at a time you’ll get there. 
Hazel x

1. Yes tried both and take regular even though not on morphine !! I ended up in hospital with impaction about 3 weeks after my op, was horrible, so keeping them going and really helping x

Good evening Elaine, i must admit my Maxillofacial consultant recommended me to have radio and chemo after my first operation as a belt and braces approach, plus my approach was i just wanted the cancer gone so I could get on with my life plus i did not have the facilities to research as we could not afford a computer back in 2008 and i was not a member of any cancer support groups. I think with radiotherapy the side effects are gradual and the further the treatment goes on then the side effects increase, with me it was mainly soreness and redness of the skin due to the radiotherapy burning my skin, a bit like a bad sunburn. Again it depends where the radio is being targeted as mine was the floor of the mouth i managed to cope fairly well and just took things a day at a time having good and bad days. I think you have made the right decision because of your cancer history. I wish you all the best for your treatment, take care.

                                                                                                   Chris x