base of tongue cancer

Susie said:

Is this normal half way through ? I have tried steaming over a bowl and the macmillan nurses have gave me a nebulizer but i think im meant to put a capsule or something into it ..Any tips would be much appreciated...Do i give up trying to talk ?

Yes all normal. The mucositis is the ulaceration and inflammation the RT causes. Just keep your mouth as clean as you can. Salt and sodium bicarbonate mouthwashes are good. The nebuliser is to try to relieve the sticky saliva and plain boiled water is perfect for that. You don’t need any capsules in it. It’s just to give you moist air. 
I gave up swallowing but talking was ok. 
Up the pain relief and take it by rote to stay ahead of the pain. 

I had long acting morphine twice daily and oromorph and paracetamol alternating every two hours. I fed by pump overnight. I must say it was a challenge as I was very very tired but the pain was manageable and I dozed a lot 

Thankyou Dani ,i thought i had to put some sort of capsule into the nebuliser so i will try that now, when i try and speak it feels like im clogging up ( sorry hope you arent eating) i was speaking to a neighbour for more than a couple of minutes and had to cut it short as i was feeling sick..I have Morphine but after taking it yesterday i felt so groggy i think i wont take that now till i need a sleep.i will keep putting the liquid paracetamol down the rig..I have just got to say to myself half way there and keep with it as there's light at the end of this dark tunnel. Many thanks for your advice xx

Hi Susan all perfectly normal. I had a nebuliser I was given saline sachets. But I also used plain cooled boiled water. You   must boil the water first to get rid of impurities. Never use aroma therapy stuff in it. 
I nebulised up to 6 times a day. 
Keep on top of pain relief by rote that way you’re not chasing  pain remember laxido if you’re taking opiates as constipation isn’t fun on top of everything else 

 hugs 

Hazel 

Thankyou Hazel im at radio this morn and will ask for saline to put in it.i never imagined my mouth would be this painful ,tongue feels red raw and talking hurts.i hope im not frightening anyone by writing this,i have been given hi fibre liquid sachets by the nutritionist nurse as ive a history of constipation .i have gave up on trying to eat the pain at the back of my throat is just too much to bear I am going to use the nebuliser more often thankyou for the tip :) 

Yes the pain is really something, after all the RT is destroying a lot of healthy mucous membrane as well as the cancer. Have another go at the morphine. Yes it makes you sleepy but it reduces the pain and your body will get used to it. Better feeling sleepy than being in excruciating pain. If you really don’t get in with it there are alternatives. Beware opiates slow down gut transit time so if you are prone to constipation you need laxatives right from the outset. I had a laxido  sachet twice a day and that kept me right. Hi fibre will likely not be enough. You need something to help your gut constrict to move things along. 

hya

i have started a pain meds diary ,i did take more Morphine yesterday and 2 Laxido through the rig. They want me to take Morphine even if its through the night.She said eventually the Morphine will build up in my system and battle the pain,if it gets to the stage when that and the paracetamol is not enough they will give me slow release patches, Right now she said let the radio and chemo do their stuff and i should concentrate on pain management and making sure im having plenty of protein and water.

Hi Susie. That is good advice. I was told that if I was waking to take morphine at night they would put me on long acting pain relief. It really did the trick. there is no analgesic apart from local that will relieve the acute pain of swallowing but is does dull background pain pretty well. The patches folk have are fentanyl or buprenorphine. They will really help. Further down the line when you've finished and can reduce the pain killers ask about how to because you will have to do it slowly over a few weeks. Hope you get on well with it.

Thankyou Dani  you really are a big help probably more than you realise..xx