Lidocaine/pain relief advice - week 3 of RT

Hi Kelly unfortunately weeks 3 is when the side effects start to kick in. He needs to be on top of pain control dont wait until in pain keep taking it by rote i was  on co codomol plus oramorph taking it to a timetable. The lidocaine suspension shouldn’t   be irritating him agree it’s not pleasant it there ti help him swallow

the nebuliser only put plain water or a saline solution in pkease don’t use anything else. It may be that his  medication needs to go in via his peg as well make sure he is also putting water in via peg. The mucus is also a normal side effects I used boxes and boxes if tissues just get him to spit it out. Plus if he’s on co codomol he may need a stronger pain relief as well   Something to ask his e n t consultant. Yes the pain will get worse so needs a discussion with his team. 
He needs at least 6 ensures a day in via peg plus anything he can take orally.

Mare sure  he is also on top of oral hygiene as oral thrush can set in which is very painful. Plus his he taking laxido or movicol ? Has bowel movements must be maintained.

Hope you can go with him to appointment 

Hazel x

Hi Kelly. Welcome back.... sort of. You know what I mean. Pain is best controlled proactively and it sounds like your dad is ready for morphine. Get him to tell the radiographers on Monday. Three weeks is just when the pain ramps up and I’m afraid he has 5/6 more weeks of this. 
I took oral morphine every four hours with paracetamol in between. When I started waking at night to take pain relief I was put on long acting morphine morning and night as well as the four hourly dose. This made a huge difference to breakthrough pain. This all went in my NG tube. 
Take the analgesics by rote regularly. Pain is better controlled before it hits. It won’t eliminate it entirely but make it bearable. 
Morphine is constipating so he will need laxatives every day. Most of us got laxido or movicol. It really is important that he take these. 
Thick mucous will disappear after treatment ends. Taking lots of fluid helps. 3 litres a day. 

There is a drug called Carbocysteine that some people get. It's supposed to thin mucous. It helps some people. I never tried it.

I hope this is a help. 

Thanks for your reply, it really helps to know that there are people out there who have been through this and come out the other side, and who are willing to support others through their journey. I will share this information with dad and speak to the hospital tomorrow about morphine. I will make sure he does not put any medicine in the nebuliser.  In terms of his bowels, the lack of solid food is making him loose.  I guess he needs to get through each day at a time at the moment and figure out a regime that helps most with the pain.. 

Thanks so much for your reply, means a lot and is a really really big help. I can relay this info to dad and I hope that knowing that there are other types of pain relief will help him. Good to know about the long acting morphine, i think night times and mornings are particularly difficult these last 2 days. I think the pain is not feeling bearable at the moment, so that seems like something to aim for. 

Hi Kelly. As my oncologist used to say the clue is in the name pain killers, to kill the pain. Plus he said hsvjng csncer is hard enough never mind us putting you through pain as well. 
Am sure you’ll get sorted tomorrow.

Hazel

Good luck Kelly. Getting  pain management right can be a little hit and miss at the start but when you get it right its a revelation. If one thing isn't working try something else. Your Dad's radiographers are the point of contact at the beginning and he is seeing them every day. Don't be frightened of telling them something isn't working. 

Hey kelly I'm jen and my dad has also had to have a PEG fitted about a week ago now but before this was done my dad was also struggling with hes pain meds as he said the Oramorph was making him feel like he was "out of it " and he was losing days so he stopped it and carried on with co codamols soluables as he was having trouble swallowing but sadly my dad had to be admitted a week and half ago and hes still iin hospital cos he was dehydrated and hes blood pressure was very low. He thought he was having enough to drink but he wasnt having the nutrients he should be and he lost a lot of weight so hes had hes Peg fitted and hes pain meds are being taken at regular times so he dont feel quite so lost with it now so I hope the Peg your dad has fitted will really help him and make him more comfortable with hes meds hun? But I'm here if u ever need to talk ok it's hard isnt it when we have to watch our loved ones going through so much pain and suffering so stay strong my sweet and take care sending big hugs to you and your dad xx

Hi Jen. Sorry to hear your dad had to be admitted, hope the PEG helps with managing nutrition and meds. Any idea when he will be discharged? Hope they're taking good care of him. It's such a worry isn't it. My dad lives on his own and I think understandably, this is all overwhelming. I've been worried my dad hasn't been getting enough nutrients, he only managed 2 ensures through the peg yesterday. he's struggling to keep up with the streaming, creaming, mouthwashes, different medication and pain killers. I'm trying to encourage him as much as possible. 

Thanks so much for your message, it means a lot. Its such a difficult and lonely time. So so hard to see them in pain. Sending hugs back and also here if you want to talk xx

Oh my goodness it sounds like your dad is going through exactly the same as mine and it is so heartbreaking to see them struggling day to day but you know what hun? They have 2 amazing daughters who will be there every step of the way! And like your dad mine also lives alone and has always been sooo independent bless em and my dad didnt "do" doctors or dentists but when he started having a burning tongue and starting talking weird I knew somethings was defo wrong so I said dad I know u dont want me to worry but I need to have a look in your mouth and when I did I was horrified of how my dads tongue looked but I tried to put on a brave face and said fomt worry dad we'll get this looked at and from that day to this hes been the most bravest strongest man I've known hes my hero honestly he never complains just tried to get on with it but the weight my dads lost was so upsetting but you try to be strong dont you for them? But yea I vant wait for him to go home so hes back in hes own comfort but they cant let him home until hes got hes care package in place where he will have district nurses and carers go in every day to make sure hes having hes feeds properly. Hes on 84ml an hour and a litre a day has to go through hes PEG tube every day and I saw him friday when we had some Peg training and the sparkle in hes eyes and how well he looked in hes eyes was amazing! The Peg is the nest thing hes had done hes walking round the ward slowly now and he says he feels a lot better but like you say it's the pain managing isnt it? But my dad also is having LIDICANE soray for hes tongue to numb it a bit and chlorexdine mouthwash and co codamols and Oramorph 4x a day so hes a lot more comfortable which is lovely to hear off the drs. But he may be home next week hopefully so will let you know and I really really pray that your dads pain gets under control my sweet sending love n hugs to u both # our dads xx