Hello All

Hi JMango 

I too had 35 radiotherapy and chemo 2 out of planned 3. We are all different with regard to side effects. In my case it was towards the end if week 2 eating became difficult by end of week 3 thjngs ramped up. But as we say we are all different a few sail through with very little side effects 

Are you having  a peg fitted ? I had no org but agreed if need be to a n g tube which I needed from start of week 4 j had it for 6 weeks. 
Hazel 

Debating the PEG. I said no but might have changed my mind on that. I have the weekend to mull it over. 

Thanks for responding so quickly 

J

You’re welcome. I have a blog give it a read might help. Difficult choice my n g tube was a lifesaver for me all my medication went through it. It became almost impossible to sip even water the tube takes the pressure away and  leaves you free to try to eat or drink without having to struggle . But the choice is yours. 
Hope this helps Hazel 

Hi. You can expect some irritation from the end of week two. This gets progressively worse. I wasn’t offered a PEG and was quite pleased I could avoid the surgery. I had an NG tube like Hazel for 8 weeks. Couldn’t swallow anything for a while but the tube saved me. Had it put in very quickly and painlessly in week three

It does thanks. I'll chat it through with the oncologist.  I'm finding eating difficult at the moment and appreciate it'll get worse.  Did you have a lot of pain relief?

Thanks.

Week 2 sounds like the week when it kicks in.  I know I'm going to be sitting around waiting for it all to start ...

Hi to start with paracetamol then by end if week 3  30 mg co codomol  4 times a day then added oramorph some  days up to 40 mil. Some Also  have m s t  a long  lasting morphine.   As long as a phased withdrawal is  done when you no longer need it you are fine. Again we are all different this was my pain relief 

Hazel 

Hi JMango and welcome to the forum.  I too had base of tongue cancer.

You should be offered all sorts of pain relief from mouth washes to anaesthetise the mouth/throat to paracetamol, oramorph etc.  If you find the pain relief you're taking isn't working for you you can change to something else as the same things don't necessarily work for everyone.  It is important though to take the pain meds regularly to keep on top of the pain.

Lots of us here who have been through similar and still here to tell the tale.

All the best.

Pain relief was paracetamol liquid (for heavens sake don't get the effervescent tablets) four times a day and 7.5mls (that's 15mg) Oramorph every four hours. When I started waking in the night for analgesia I got long acting morphine (20mg MST) to take morning and night. That was at its height. Pain relief is better taken proactively before pain is bad.

If that is insufficient there are Opiod patches available which are changed every three days. 

A heck of a lot of people get by with much less than I did.

As an aside I've seen research that seems to in dictate that having your radiotherapy early in the morning leads to less mucositis.

Thanks Linda.  Very positive session with oncologist I've just got to get my head around this treatment. I'm already on painkillers,  cocodamol and ibuprofen.  And when the treatment kicks in, do you just sleep all the time, did you go out at all?