tonsil cancer

Silvergoddess said:

Anybody out there????

Hello and welcome. There are lots of us. Have a read through some of the posts elsewhere in the group. 
It’s really early days for you and there’s going to be a fair bit of pain to cope with. I was on two hourly pain meds and coped very well. Morphine every four hours with paracetamol in between. In addition I had long acting morphine twice a day which was a game changer. 
Yiu should have been given Difflam. Try that ten minutes before trying to swallow anything. 
Try Ice cream or custard to start with. They won’t taste very nice but that’s what this treatment does to your taste buds. Slowly slowly try things. You will get there. Recovery is a marathon not a sprint. 
Stay with us. Others will pop in to lend you a hand. 

Hi Silvergodess, welcome to the group. You are still very early in recovery, and everything you have said is normal for 7 weeks post. Unfortunately recovering can be a long-drawn-out thing, it often feels like 1 step forward and 2 back. I remember thinking the same as you, that I would never eat again, but you will, it takes time, your body has a lot of healing to do, but you will get there. You are not alone, we are all here to help, any worries or questions just ask.

Ray.

Thank you thank you !!!!! for answering me.  Your words are saving my life and feeling so much calmer.  Honestly been thinking the staff are not telling me the truth that I will feeI better at some stage.  I am taking 2 x effervescent paracetamol with 5mls morphine 4 hourly along with the 4 x fortisip + 1 x fibre fortisip.  Strangely enough Difflam was given to me yesterday (maybe due to me loosing it and shed a tear or two).  Thanks again !!!!!

Thank you.  You are so kind taking the time to speak to me and your words are extremely comforting.  I have certainly read and re-read your kind understanding words.  Thanks again Ray !!!!!!!!

Hi yes there’s lots of us out here. I’m 5.5 years post treatment for tonsil cancer. Keep in top of pain killers take them by rote use your peg mine was a lifesaver I had ng tube fitted. It’s very early days for you recovery can’t be rushed uts a marathon nit a sprint. My oncologist said he would  cure me he did he also said he would take a year out of my life he did that as well. Listen to your body there’s no quick fix some days z2 forward one back but You'll get there. Read my blog below there’s links to others as well

Hugs 

Hazel 

Silvergoddess said:

Thank you thank you !

Honestly you’re welcome. Everybody is different and all our recoveries are individual, there is no pressure to get well soonest, but we do get there. So will you 

Hi Silver

T2N1M0 tonsil cancer HPV+

Finished chemoradio June 2023.....3 molars removed 

PEG removal in September.... thought that l would never enjoy proper food again.... but healing takes a wee bit of time.... now eating chippy food and mild Indian/Chinese dishes.....tea and chocolate biscuits are a daily treat....

Take care and best of luck

Peter 

Hi, finding this site will be one of the best things for you... I am 24 weeks post treatment and honestly, starting to feel like me again. Your are still in the deep end of things but light is coming.  It's a slow process but you will get there. I had my ENT appointment today and saw a different consultant.  When I was describing what I'd been through, I was reminded that I never thought I'd get to the stage I'm at now. So don't lose heart, it will improve... but it will take time.

Good evening Silvergoddess, i promise that all these side effects will ease with time, i always recommend 6 months as a good indicator,. I remember watching my family tucking into a Christmas dinner while i was using a PEG but the next year i was sitting with them enjoying the meal and company. I was on pain relief (oxy-norm) but not for the radiotherapy it was more for recovery from the surgery, im afraid most of us have gone through similar to yours, as you can see from their replies they have come through it all and made a great recovery. Hang on in there we are with you and know how you are feeling, it will get easier, wishing you all the best, take care.

                                                                                     Chris xx

Was at the same stage 4-5 months ago so know it is not a lot of fun. Now, the pain is mostly gone, taste is coming back, RIG tube is out (It fell out actually but was due out anyway), some fatigue. Had a PET scan mid January with a bit of a scare (they saw a signal on my liver but MRI was fine) so as good as it gets at this stage. Feeling like I'm coming back to life after a long hibernation. It's difficult but not impossible, and it gets better (with some ups and downs).