Pain management

Hi. This sounds urgent. I’d call his CNS to get seen ASAP 

Dies your husband have a feeding tube he can use instead of struggling orally? 

Good evening TurboTrace08, i would agree with Danis's advice at get an urgent appointment to see your husband's consultant or one of the team, if he has not got a feeding tube then i would strongly recommend having one, Either a PEG or an NG tube as it will make life a lot easier and help him build up the calories which are much needed during the recovery period. Im afraid to say recovery does take time we all recover at different speeds with different side affects, slowly but surely you will get there, take care.

                                                                                      Chris xx 

Hi. I contacted Macmillan when I had such thoughts & received 6 phone counselling sessions. It was a great relief to talk to someone about my fears & dark thoughts without burdening my husband with them. I just cried through the 1st 2 sessions. I would highly recommend it. I had a PEG & it was a lifesaver as I couldn’t eat or drink from week 4. 
I would echo the advice  from the others & contact his team asap for pain relief/feeding advice. I was on liquid paracetamol, Codeine & Morphine. 

chris2012 said:

if he has not got a feeding tube then i would strongly recommend having one,

Hi Chris. It's so distressing to hear from patients here who for one reason or another have struggled through this awful treatment without a feeding tube. My NG tube saved my life and paved the way for an uneventful recovery. I could concentrate on things other than food to make my life easier.

TurboTrace08 I hope your husband gets some help with this soon. 

Thank you. We're going to put a call in after the weekend. 

No feeding tube and he's made it clear he doesn't want another one.

Thank you x I don't think I'll be able to get him to have a feeding tube again but I'll try. He's a stubborn bugger.

Thank you. I've suggested seeing a counselor but again he's stubborn about seeing her ' what can she do?'! I'm  constantly bashing my head against a brick wall

I know they'll probably up his morphine which I know he doesn't want either! Stuck between a rock and a hard place

Thank you x

Hi am sorry to hear your dilemma. Sadly if he won’t listen you are going to have an uphill struggle as we all have said our feeding tubes were a lifesaver. Ok a few do manage to force themselves to eat but even they admit to struggling. If I may ask what’s is issue I know many especially the guys think it’s a sign of weakness honestly it’s not. Our treatment is brutal due to the fact our mouths are a life line to our mere existence we talk we eat we breathe we drink through our mouths. He is going to find recovery extremely difficult with aid ,no amount of morphine can make up for the nutrition he needs. I was told quite firmly I needed daily 85 gram of protein and 2500 calories plus 2-3 litres of water each and every day to aid recovery. I’m not being harsh just being truthful. It seems post covid the aftercare isn’t what it was. Please try to get him at at least have some counselling a different approach from a stranger may be the trigger he needs. 
I hope you are at least getting out of the house as I made my hubby go see a friend just to get away from me and give him some space. It’s equally as hard for our carers 

glad the humidifier has helped try to get him to either read our posts or point out bits if our blogs to him  he’s stuck between a rock and a hard place at the moment  

Hugs Hazel 

Just had a chat with him

Absolutely no to the tube. Luckily his weight is stable and he's seeing a nutritionist a week Wednesday. 

Pain is constant so he's agreed we're upping the patches to 125mg as I'm due to change them later.

When he takes the morphine tablets, the pain relief lasts 30 -45 minutes that's all

He's seeing ENT next Wednesday for a nasoendosocopy so hopefully we'll see what's happening with this sore patch which is causing him all this pain. I'll also get them to listen to his chest as I'm not sure if the cough is an infection. 

Thank you for all your advice and support  - it is much appreciated x