Hi all need advice
Suffering with terrible nausea, they've changed meds twice. Im now on ondansetron and cyclizine its a bit better but im struggling as weight is dropping off me.
Im at beginning of week 3 so almost ½ way through .
My tongue and mouth is extremely sore now and anything I can manage to eat is a struggle. Im doing all the rinses aspirin mouthwash etc which helps a lot, but finding it hard.
When did everyone who had them,start to use their pegs . A nurse last Friday said its too early. Yet on Monday another said thats what it's there for. Getting conflicting information. But if I loose anymore they said I'll have to go onto the ward , which I don't want.
I have been using my peg the last two days , twice a day, but im disappointed really wanted to eat normal for as long as possible .
The radiographer said theres a chance im getting full blown effects early and it may not necessarily get any worse for me, but think she was being kind.
Thanks Tracy
I have been using my peg the last two days , twice a day, but im disappointed really wanted to eat normal for as long as possible .
You’ve done the right thing. Use the PEG. It’s not a competition with the treatment regarding eating. Do your swallow exercises and you’ll be fine.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
The radiographer said theres a chance im getting full blown effects early and it may not necessarily get any worse for me, but think she was being kind.
I must say I plateaued at the end of week four but that might have been down to correct titration of pain relief. Don’t panic. Just don’t be frightened of industrial quantities of powerful analgesia.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
What are the swallowing exercises, nothing has been mentioned.
Here are some from The Christie. www.christie.nhs.uk/.../1109-swallowing-exercises-for-pts-receiving-radiotherapy-to-the-head-and-neck-speech-november-2021.pdf
I found the hard effortful swallow easy to do. Another way of doing it is to put your tongue between your teeth then swallow.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
They've given me dissolving paracetamol and oromorph. I've not started the oromorph yet
When you start the morphine make sure you take laxido or Movicol with it. Oramorph may let you eat for longer, by the way, if you are really keen.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Thanks Dani.
Yes im taking lactulose already with being on ondansetron.
Thanks for the exercise link
