Radiotherapy nightmare

Hi Bodhiprem,

I think that most of us have suffered with the mouth ulcers and it will probably be worse before it gets any better. Your case seems to be in the extreme and you really should be considered for admission for additional treatment.

Please remember that there is always a light at the end of the tunnel. We have all been there and the light will get brighter for you.

Take Care,
Bob

Hi Bodhiprem. 
If your pain isn’t under control you need to tell your radiographers 

I had long acting morphine for background pain instead of fentanyl but the idea is the same. I topped up with oral morphine alternated with paracetamol through the day. There is a pain management system to help everybody  

I was admitted for a few days to get a nasogastric tube and to better manage the pain  

Your team should be giving you something like Flamigel to manage your burned skin. There is a dressing called polymem that some people use if those burns are severe. 

Get back to your team and lay it on thick. 
Best of luck 

Good evening Bodhiprem, just to reassure you that there is light at the end of the tunnel, it sounds as if you have had similar surgery to me with the jaw, dissection, and skin grafts, i tend to agree that the treatment afterward is a lot more uncomfortable and painful but with proper pain management it should be more bearable. I had my operations and treatments done 12 years ago so things have improved with pain management and skin care all i was offered was Aqueous Cream which in all fairness did help soothe the skin. At one time i was on pain patches and morphine to combat the pain so please let your consultant/oncologist know how you are feeling as they will try their best to help, maybe adjust your mask so it's not too painful. I know it's not easy but hang on in there, take care.

                                                                                    Chris  

Hi Bodhiprem. I too burnt badly on my neck area the last  2 weeks if treatment I was wrapped up in a polymem bandage apart from treatment when hospital grade cling film was used around my neck and chest. As soon as treatment finished it took a few weeks to clear up but it did clear. Do you have gelclair for mouth ulcers it’s on prescription if you find it too strong you can dilute with water. Please ask about long lasting morphine tomorrow at hospital. There is light at the end of the tunnel it’s dim at the moment but lots of us here testify to that fact. 
baby steps snd one day at a time.

Hazel x

Hi Bodhiprem as bad as it seems now  it will all pass. Tell everyone concerned of your issues and get each one addressed asap. Cream everyday helps on neck and chest . There is no stoping time and thats what you need to get through this which you will . Just take one day at a time helps instead of looking at the big picture. All the Best minmax

Hi Bodhiprem

So sorry you are in such pain, it can get bad from week 4 on. I was admitted to hospital with dehydration in week 4 and was in for a week and that was the best thing that could have happened. They took me to my daily radiotherapy session and I was on a drip for a couple of days.

I have also had 3 surgeries for my jaw and definitely found the ops much easier than the radiotherapy.

One thing I did find out the hard way was that 4 HOURLY PARACETAMOL was really helpful and kept the pain much more under control along with the morphine and fentanyl patches.

Don’t underestimate the PARACETAMOL as I thought it would not be that helpful and did not use it initially but when I was in hospital they put me on it and it made a big difference. I used the dissolving one as it was easier to get down with such a painful mouth.

Also found the Movicol great helping with the constipation as nothing else seemed to work.

In the end I just had to grit my teeth and take it a day at a time.

You will get there but definitely talk to your team about your concerns.

Lyn

Sophie66 said:

One thing I did find out the hard way was that 4 HOURLY PARACETAMOL was really helpful

Same here. Paracetamol is a hugely underestimated pain killer.

I couldn't cope with cocodomol for some reason and was on Paracetamol only for three weeks before it all came crashing down. When I was admitted for my NG tube and put on a drip oramoroph was introduced and it changed my life. I was on oramorph five times a day and paracetamol four times. When I started waking in the night to top up the oramorph I was given Long acting morphine...again a game changer. Fentanyl patches do the same thing, just keep on top of background pain. 

Totally agree about Paracetamol.  I used to take 2 tablets about 30 minutes before I wanted to eat - had to grind them up in my mouth as I did not have the liquid form.  After those 30 minutes I was just able to swallow.

I bought a grinder and it was a joke the amount of huge tablets I was taking all day when I could barely swallow water. That was my roll for the day trying to swallow tablets 

Subsequently I brought a grinder, but first time through the "mill" the only option I had as I learned what worked was my teeth   Getting a bit of an expert on operations now!