Help!

Oh dear. Poor you. It’s hard being a cater with a recalcitrant patient. 
I was in an awful lot of pain at end of week three. I got fitted with a nasogastric tube and had proper pain relief then never looked back. 
He has to help himself. Not eating and being in constant pain is a recipe for disaster. 
Getting proper help from his team is not admitting failure   
If I was you I might be tempted to take a break away from home for a couple of nights to knock some sense into him

Hello. I had bilateral tonsillectomy followed by 6 weeks of chemoradiation. I had a PEG & used it from week 4 for hydration, meds & feeding overnight. What pain meds is he taking? I was started with paracetamol, then also was prescribed codeine & morphine. Keeping on top of the pain is essential. My PEG was a lifesaver as I could not eat from week 4. I had counselling via Macmillan & it was extremely helpful - would he be up for that to help cope with the situation? You can also contact them for help - you need to look after yourself too. 
Show him this forum so he can read other people’s experiences. 

Hi oh dear so sorry for you.  I remember my oncologist sayIng sometimes it’s men who won’t take advise and refuse the feeding tubes they do take Longer to recover. He must be in horrredous pain what pain meds is he  on ? Am surprised he hasn’t been admitted to be honest. I would be tempted like dani says  book a few night away leave him to stew if he is being so recalcitrant. Give Macmillan help line a call they do offer a counselling service. His is team aware of how he is feeling ? Often head n neck patients need a mild anti depressant. Cancer is a horrid disease and when it affects our mouths snd throats st times it’s unbearable.
I’m not proud to say I was on the odd occasion pretty nasty to my hubby. He did everything for me. As the old saying goes you always hurt the one you love, the one you shouldn’t hurt at all. 

He’s a long way to go am afraid to say the pain will progress I can’t lie it won’t get easier. His team needs to be made aware. As times goes on he may not be able to swallow then he will be admitted. 
sending  hugs 

Lots of us have been through this and it’s not at all easy. Like Blod says, make sure he’s getting the right painkillers and stay ahead of the pain, don’t chase it. At one point I was on MST, Oramorph, paracetamol, ibuprofen, Difflam and Oxetecaine and kept a daily checklist religiously to make sure I was taking the right drug at the right time. As for eating, I didn’t have a PEG but I only survived by ‘eating’ copious amounts of double cream in Ready Brek, porridge, custard, scrambled eggs, Fortsips and milkshakes. My wife was really instrumental in helping me get through and I could only see in retrospect just how brilliant she was.  It’s tough for both of you but will eventually get easier. Thinking of you both. M

Hi Moog, as the other replies have stated being the partner of someone undergoing this treatment is a tough role and I am eternally grateful for the support of my wife during mine. You are doing a great job and sometimes you are the only one we can off- load on. I did have a RIG tube inserted and it was a lifesaver as I was unable to eat. It was initially uncomfortable but soon settled down and made getting my nutrition possible. 
The unpleasant effects of treatment will be kicking in but it DOES get better with time. Maintaining some kind of food and medication is vital to cope with his treatment and just as important, his recovery.

Hopefully some of these positive experiences will help him realise he will get through this.

All the best

John

 The Moog 

I just talked to my husband. He says….Ask him what he wants you to do. 

Then make sure his radiographers know how much pain he is in. I was on two hourly morphine and paracetamol alternating and when I was prescribed twice daily long acting morphine to control the background pain it was a game changer. 
His team won’t let him down. If he gets too ill he will be hospitalised to continue his treatment so don’t give up on him and yourself. 
This cancer is curable though the treatment is rubbish and recovery long. 

Thank you so much. Today is a better day. I feel so much better reading everyone’s reply’s and advice, particularly ‘keep ahead of the pain, don’t chase it’ excellent advice. I feel your experience Markel is very similar to my partners, he is also on the Pathos trial and know reading your blog will help him so much. The last few days have taken us both by surprise, I think we thought naively that he was going to sail through it! I now feel equipped to deal with this crazy situation we find ourselves in, I cannot thank you enough x

If he needs a calorie boost to maintain weight you might want to try him on this 1400 calorie chocolate and peanut butter milkshake! (You can buy the Carnation sachets online.) Naturally I added a little double cream to mine!  Here’s the link….   allshecooks.com/.../