Hello everyone ❤︎

Hi Bert’s Daughter. Welcome to the community. What you describe is par for the course. I didn’t have chemo but the RT was enough. Chemo makes the side effects worse. 
Has your husband got a feeding tube fitted? I had a nasogastric tube placed in week 4 because I couldn’t swallow. It saved my life. Adequate analgesia taken by the clock helps tremendously. I was in long acting morphine oramorph and paracetamol. 
Day at a time got me through. 
The nasty taste is caused by the platinum chemo. Eating with plastic cutlery is said to help. 
Has he got lots of stuff for his mouth? I had Caphosol Gelclair and Difflam and they all helped. 
Generally I can say that my pain plateaued at the end of week 4 and I think that’s a common theme. 
The ulcers didn’t go for around four months but they became less painful. 
My treatment was over four years ago and I’m now fine. The only lasting side effect is reduced saliva but I can live with that. 
There are a few people here just starting on this road and I’m sure somebody will be along to give you a hand 

Best wishes 

Thank you for your helpful message Dani, I'm glad to hear you've recovered so well Xx 

Most of us do. It’s a horrid treatment to get through but there is a light at the end of the tunnel. It’s a very curable cancer. 

I've just been devouring your blog Dani. Great advice much of which we'll try to implement. I did mention to husband that he needs to be drinking more. He tries, he really does, but so difficult when even plain water tastes so disgusting that he feels nauseous.

He does have a RIG fitted (just another horrendous procedure to endure, along with the tonsillectomy, MucOsectomy and neck dissection) but his Oncologist told us IF he needed to use it, it would likely be for the last 2 weeks of treatment and for 2 weeks after it ends. Sooooo, we have been hugely taken aback that it's looking like he will need to use it much sooner than that. He lost 4 kilos in 12 days (last weigh in, probably more now). 

We do have Caphasol, but he hasn't used it regularly enough. So many meds, so much time taken up at the hospital every day, trying to run a business, and with primary school aged children.... we are routineless and running around like the proverbial headless. 3 months post diagnosis and still shell shocked I think Xx 

Ignore the estimate from your oncologist. Use the tube when it’s needed is my advice. Speech and language make so much of swallowing being lost if you’re not eating. It’s just not true. If you do those swallow and jaw exercises religiously, that’s enough. 
We all approach these things differently. I know if lots of guys, especially, who have come and gone through the community and really stuck it out and refused to use their tubes. It’s control isn’t it? We are so out of control with this, all the awful things that are done to us. I just put my head down and did as I was told…. Mostly. 
The mouth stuff is a bloomin chore. I made a list of all the things to be done and the meds to take. I put it up in the kitchen and ticked them off through the day. I couldn’t face bolus feeds through the tube so I fed at night slowly via a pump. It left me free through the day to try stuff I could do. 
Tell him not to be brave. Tell the radiographers how he is feeling and take his meds. Proper analgesia is a game changer. It makes all this doable. 
There are people who sail through this. So don’t assume he’s going to have a really bad time. 

Thanks for looking at the blog. I wrote it because it was the one thing I could control 

If you look up RadioactiveRaz  she has an excellent blog. 
Also if you click on MarkEL and go to his profile he has a very informative diary of his treatment 

Hold on. You’ll both get there. Hugs 

Hi Welcome from me.  As Dani  says the feeding tube is there for a reason please please get him to use it. It’s hard enough chemo and radiotherapy without being unable to eat or drink I know like others from experience. Ignore oncologists estimate the pegs there for a resin. Plus his he on adequate pain relief by end if week 3 I was in 8 x30 mg co  codomol plus up to 40 mil,of oramorph.which went in via my feeding tube. Water went in through the feeding tube we had a spreadsheet that kept track of how much liquid I was having I aimed for 2-3 litres every day. Tell him to forget about taste of food it will demoralise him so using the peg takes away that worry. Accept any offers of help nows  not the time  to be superwoman if you fall ill he will be in a worse position. So remember to take care of you as well. Loosing weight isn’t good I was weighed weekly and told I couldn’t afford to loose 10% of my weight. Tomorrows Friday make sure you’ve the supplements for the  peg plus medication as it’s always tge weekends when trouble hits. Plus if on opiates regular laxatives are needed movicol or laxido. Try to maintain a schedule for oral care as that’s vital otherwise oral thrush could  happen p, nit wanting to scare you just being honest. 
hugs Hazel xx

Can't thank you enough for your support. I hope you don't mind me picking your brains as we go along. 

We don't actually know how to use the feeding tube yet. Assume everything goes in to the syringe? II'll get him to ask the dietician tomorrow Xx 

We are all here for our brains to be picked. Ask away. Somebody will have an answer. Yes get onto dietician asap. Stuff always happens over the weekend! 

Hazel, thanks so much, to you and Dani. It's chemo day tomorrow so plenty of waiting around and time enough to check out the pain killer situation. It doesn't get done unless you ask. Can you believe he was sent home after his first chemo without the Metoclopramide or Dexamethasone he needed? Really grateful for your help and support Xx 

Hi Bert’s Daughter That’s incredible in fact unbelievable I’m so sorry. Yes be pro active we are finding post covid times it’s a case of having to try to pre empt everyone. As fir feeding tube mine was a ng tube and both me snd my hubby were given a lesson in how to use it. My hubby used to syringe water inti mine regularly to keep ne topped up. Do you have the feeds already? Get into dieticians Tommy 

Hazel xx