curious

Hi Connor. My cancer was in a slightly different place but the side effects are similar. 
The radiotherapy has a residual effect for 2/3 weeks so that’s where you are. Early days. 
My NG tube was in for 6 weeks after treatment by which time I could eat soft food. I was still on morphine up to 12 werks which is when we usually turn a corner. 
I managed a steak at 12 weeks…. Couldn’t taste it though 

Connor96 said:

Wondered if you wonderful people had any advice xx

A day at a time. Don’t be dismayed if some days are backward steps. We all heal at a different rate but all of us heal much better if we keep our weight up and keep “eating” one way or another. 
Add butter and cream to everything. I started with Ready Brek poached eggs, tinned peaches, tinned macaroni cheese, All stuff that didn’t need much chewing and slid down. Experiment but don’t be discouraged if sometimes you can’t manage something you did previously. 

Okay thank you that’s reassuring I was just worried but now i know this is expected I’ve just gotta carry on fighting. How long until you got your taste back?

Beautiful advice thank you

i can really relate to the sometimes feeling as if I’ve gone back two steps, but I’ve come so far i can carry on this journey 

even if it feels like a never ending battle at times xx

Hi Connor well done in completing treatment. It’s early days for yiu. Best advice I can give is forget about enjoyment of food for a while treat food as fuel. If yiu can eat it just eat. I was n g tube fed until week 3  then I got calories in by orally drinking 6 ensures a day leaving me free to experiment. If yiu can do soups  add double cream or cream cheese extra calories. For now it’s all about the calories. Custards Kellie eggs thjnk nursery food some days 2 steps forward ine back but you’ll get there. 
Hazel x

Connor96 said:

How long until you got your taste back?

Six months and kept improving for three years. 

Hi Connor - Yes, sounds 'normal', it's such a bore but take it a day at a time. I remember the 2 steps forward and 1 step back period in the first couple of months - it was frustrating! Keep watching your calorie intake for a faster recovery. I had a few times where I thought I could reduce the pain meds then the inside of my mouth went through another renewal or a scab came off (yuk!) leaving raw skin exposed... Take your pain killers by the clock in the early days. I used my RIG for about 4 weeks and then started drinking Fortisips and tried porridge, ready break, yoghurt & honey, poached or soft boiled eggs, overcooked pasta with grated cheese and overcooked packet noodles. Crap food but keep counting up the calories!

My taste buds would come and go over the first 4 months - also quite frustrating, but the mouth goes through constant renewal. I'm now 8 months on and taste is pretty good! My oncologist said taste buds and saliva improvements can still happen up to 3 years on, which is very promising considering my taste is already pretty good.

Keep on ploughing ahead, take it one day at a time, be prepared for setbacks and you'll do well!

Helen x

Hi Connor, you are still in what I found was a difficult phase. Post recovery is so very hard and as you say, quite miserable! Like others on this site, I was PEG fed only for weeks after the treatment finished. My first food was chicken soup. Everything tasted vile! I sometimes cried whilst forcing soup down, I wanted to eat and one mouthfall could either make me sick or just tasted foul. Trust me, it very slowly gets better. I would say 6 months post treatment the taste very slowly comes back but it can be intermittent , good days and bad. That’s a big turning point and such a relief. Now at nearly 8 months my taste is good. I’ve just started going to restaurants again. So as the others have said, eat to get your calories and the rest will follow. Good luck and all the best. Debbie x

Thank you all for the advice, it’s a long road of recovery ahead 

thanks for making me feel like I’m not on my own with this. You’re all amazing 

and when I was having treatment I met people who were having head and neck cancer treatment and i recommended this amazing support network. 

Connor96 said:

and when I was having treatment I met people who were having head and neck cancer treatment and i recommended this amazing support network. 

Thank you Connor. The doctors fix us but they don't really know how we are feeling. Peer support helped me through the darkest times. This place really is the best.