Hi guys, hope you don't mind me tagging in here. 

I'm really sorry you are going through this

My husband completed his 20th Radiotherapy session on Friday, 10 more to go. He had a cancerous tonsil removed at the end of Jan with 47 lymph nodes taken (only one was found to be cancerous). Pain/discomfort level is quite high, every day his ability to eat is less and less. Yesterday he had to completely shave his beard as there are patches, think ZZ top pre op to a couple of inches to stubble pre Radiotherapy, now clean shaven. Not a biggy in the grand scheme of things but this and the lack of eating is really bringing him down. He's just announced he's going to have Ensure only from now on but he hasn't had any so far today, I really think he's going to try and avoid having them. I'm really worried.

Can you tell me did you both ed up with a feeding tube, and a what point? 

Cheers in advance.

Hi everyone

I'm 14weeks since my last radiotherapy session and it does get better! I have muscotosis which is painful but manageable. 
make sure you keep on top of pain relief as this will help you swallow, try and challenge yourself with eating - I liked custard & ready brek (still eating now) I also likes sloppy omelettes with cheese (easy to swallow!)

I used my feeding tube for about a month, during and after radiotherapy - it's a pain but dilute your fortisips with a little milk and they go through easy - I had 4 in the morning & 4 in the evening + pints of water throughout the day - it's really important to stay hydrated.

I think I started to turn the corner at around 9 weeks post treatment - life's not perfect but it's a million times better than it was and I feel human again. 

im now eating prettty much anything (as long as I accompany it with water) apart from dry things like crisps or nuts, cereal or chips! Also my tastebuds feel as if they have been reset - everything tastes concentrated - spicy, salty or sweet I'm currently avoiding - I'm a chef so it's going to take some getting used to!

also try and eat meals together I found myself isolating myself at dinner times try and eat something together I found routine really helpful.

Thank you so much James,

I've just read this to Steve (the hubster), I'm not going to lie he was a bit shocked at the length of time it took for you to start feeling better, but now he knows he's better prepared, and the info about the feeding tube helped because I'm sure he thought he would be able to get away with not needing it. Now I think he's reconsiling himself to the fact he will have one.

Thank you again, thats really helped us today.

Hope your recover continues to go well.

Best wishes 

Like your husband I have 10 more radio to go and just don't know how I'm going to deal with them. I haven't been given fortisips or any meal replacements and just liquid codeine in for pain. I'm at the hospital for my last chemo and 16 th radio tomorrow  and they are going to have to do something. This weekend I haven't eaten and hardly able to drink. I've bought back my chemo tablets too so that's a worry. 
 

on a positive note , my d in l had the same cancer as your husband.  Dreadful effects of treatment but a total recovery and cure 

in my innocence I thought I would be better as soon as the treatment finished 

Hi Maggiepd,

Really sorry you are having such a tough time, hang in there.

Steve's on Oramorph and Paracetamal, he's also got a spray for the dryness and something else for the gunk in his throat, at the begining they were reviewing him weekly, but its been daily since last Thursday. Ask to speak to your assigned nurse on Monday and get them to sort it out for you. 

Like you we thougt Steve was going to be OK after the op, so the Radiotherapy was a bit of a shock.

I really wish you the best with your treatment.

No worries any time!

with regards the tube I was exactly the same - adamant I wasn't going to use it!  In the end i Accepted it &  it really helped, I'm waiting for mine to be removed - hopefully in a couple of weeks...

best of luck

Hi, 

Thes posts are really informative. My partner completed 30 x radio and 6 x chemo, 3 weeks ago. He had a tube fitted before treatment. He still can't eat but has started to swallow watered down fortisips over the last week. He's currently having 5 a day, some swallowed and some via the tube. He was on the up for a few days as he was coping well with smells, etc. Then all of a sudden, yesterday his smell went haywire again, so lots of things he can smell is making him nauseous. He's now on a downer as he feels like he's going backwards. Is this normal?

thank you 

Hi Shellb123,

I'm going to say yes unfortunatley.

Steve (the hubster) completed Radiotherapy the end of April and I'm not going to lie its been a bloody rough ride. He didn't need a tube in the end but he hasn't resumed eating. He's lost 2 and a half stone, looks and feels rough, he didn't really have enough to lose. Ironically as a couple we've stayed the same lol, I eat to cope with stress. The poor thing has had 2 lymph infections (he could be on his third right now) and has developed mouth Thrush. On any given day he can feel OK and the for the next 7 feel rubbish, sleepy and in discomford. He's on a 10mg Morphine patch, tops up with Oramorph 10mg and Effervescent Paracetamol 500mg. Although his only intake at the moment is Ensure (x6 per day, if its a good day and he's awake) he needs Laxido to keep him regular. He's now been perscribed with Penicillin for the suspected 3rd lymph infection and Nystan for the Thrush.

Heads up the Thrush presents as a white coating in the mouth and the lymph infection Steve looks like a pelicon with a swollen, sagging jawl and muck in the throat.

We have a face to face appointment with his consultant this week and a PET scan next Monday. I'm hopeing that when he gets the clear from the scan he may turn a corner as he's struggling to stay positive right now.

I'm sorry we don't have a better experiance to share with you but fore warned and all that.

Big virtual hug hun, I know how tough it is for you right now as well x