Week 3

Hi Anna.

Couple of things that helped me were Difflam mouthwash, and sucking ice pops.  I got the Difflam on free prescription.  It was a bit too strong in the early stages so I used to dilute it with water.  I know Difflam has helped other people too.  Not so sure about the ice pops. They definitely helped me but I don't think I've ever heard anyone else say that, so perhaps it's just me!

Best wishes for the rest of your treatment.  xx

Good advice from Margaret Anna; make sure you make yourself heard as well, ask your team about any issue you may have, no matter how small it may seem. If you keep quiet they'll probably assume you're OK.

As far as pain relief goes there are loads of options available to you/your team up to and including oramorph (morphine) and fentanyl patches if it gets bad in the later stages. Again, don't suffer in silence; if/when the paracetamol/ibuprofen aren't working tell somebody!

Hi Anna, 

I echo mike,s response ,you'll be  at the hospital every day I take it,so definitely speak up and get them to bring out the big guns ,I,m starting Thursday so yeah 3 weeks down the line  I expect to be where you are.

Dont forget keep drinking plenty of water and the mouth/swallowing exercises 

Have you checked out radioactive raz aka hazel blog tons of info on there also Anchor1707 on cancer uk I've bookmarked them on me phone and will keep referring as my symptoms occur 

Good luck 

You're on your way  !

Thanks..I will ask tomorrow!!!..x

Oral hygiene is paramount. Keep your mouth as clean as you can. I had severe mucositis but still managed to brush my teeth. Don’t suffer pain and take your pain meds in a strict rota rather than as a response to breakthrough pain. I was on Oromorph and Paracetamol with long acting morphine overnight by week three. 

Hi Anna

Like Margaret, I was also prescribed Difflam mouthwash which helps to anaesthetise the mouth.  The other thing to help with pain while swallowing is Antacid and Oxetacaine Suspension.   You take it 5 minutes before eating and it anaesthetises the throat.  It has a slight minty taste - you can get it on prescription.

Another tip is to ensure you take your pain killers 30 minutes before eating so they're at maximum efficacy.

Good luck Anna.

Linda

Thank you x

Feeling a little sorry for myself...asked my team for the next level of pain relief..and got co-codamol but it hasn’t touched the pain...the mouth wash is good for relief of soreness in my mouth though asa are the pop ices...so back in the morning and see what else they have!..

its just a moment in time.....

Hi Anna. I get the feeling sorry for yourself completely. You don’t want to “use up” all the pain killer options too soon and it’s depressing when something doesn’t help. But your team will want to assist and get you out of pain.Definitely keep going with the cocodamol for a few more doses, just in case. But if that doesn’t help then no matter - go back tomorrow and ask for something else. Might be oramorph next (yum - it’s delicious) but there are plenty of options left - don’t worry that you will be left in pain. Towards the end of my treatment I had a syringe driver containing Morphine going 24 hours a day, topped up with oramorph and a couple of ordinary painkillers for good measure. Then later I went on to a fentanyl patch.....there’s really so much you can have but you do need to communicate clearly with your team.  There’s a world of pain relief out there, so don’t despair.

Hilary

Why did they waste yours and their time giving you co-codamol , they should be looking into Oramorph or oxy -codone  as the main painkiller , pleased the other items are helping the soreness in the mouth . Don't let them fob you of AnnaLJ , Best wishes ,

                                                                           Chris x