sorry to hear that Laura and given he is now in a lot of pain am surpised he is not prescribed morphine.

Anno all different but ive have been on morphine since middle of week 3 and only now starting to reduce dosage but still on. At peak I was on 40mg MST tablets twice a day. They are meant to last 12 hours in system so rationale is that you would have morphine helping you 24 hrs a day. This can also be topped up by oral morphine. Only a suggestion but might be worth speaking to team re morphine. Painkillers there for a reason and no need to be in pain if morphine can help alleviate.
Im still on morphine end week 11 post treatment and on half dose now. Was also given soluable paracetamol in addtion.
Again only my experience but the Difflam in liquid mouthwash is nice and pleasant and might be worth a try. Does he have Caphasol tablets?..I was told better than difflam but I have been using both throughout treatment and has helped. Was told oral hygene really important and to keep using these.

Sorry dont mean to come across as know it all, just sharing my experience and doesnt sound like Mick is being prescribed very much when by the sounds of it, maybe he should as doubt paracetamol and codine gonna kick in much at this stage of his treatment.
I also feel for him re appetite as its really hard to eat when you dont feel able. How many supplement drinks is he taking a day. I was told at my peak to drink 6 a day but I struggled with that amount and most I can manage is 4 plus one small meal at dinner.

Hope Mick can find some respite with his pain and wish him well. Hope the next update has Mick in better place.

kind regards
ian
 

Hi Ian. I've just joined this forum, yet I have been following your story since December.... just a bit at a time.... eventually got to the end so it's time to say hello! My partner has just completed his 4th week of radio and chemo. Even though I've been reading about throat and neck cancer nothing prepared me for how difficult it is (and he didn't/doesn't want to read about it so I can only assume it's a shock to him too). My partner feels constantly ill from the chemo and the radio has affected his tastebuds. Everything tastes vile to him, even water (and I've bought bottled waters and various fruit squashes), he detests everything. I admire you being able to drink litres, when he's not even drinking a cup a day. It's so hard to get him to drink more and he's getting quite angry with me, he says I just don't understand. But I realise how important it is to remain hydrated and I'm sure he's probably feeling more poorly due to lack of food and drink!! He does actually have a PEG (since last week) but until yesterday he'd only had one Ensure through it at home. I can't attend the appointments but today I phoned the dietician and they're under the impression he's having 2-3 Ensure a day and more water. Apparently he had a lecture today to up the ensure as he's losing weight and dehydrated, and Monday the dietician will talk to him. This isn't easy. Fortunately he's not complaining about mouth pain, but he's really withdrawn into himself and probably not telling me everything (very down). Anyway, sorry to start on such a negative note, but that's how it is at this stage. I look forward to reading further posts and I hope that I have jollier things to report in time!  

Hi Louisabel this treatment isnt nice, I believe it’s one of the worst areas to treat with radiotherapy because theres so much going on in that area, but drinking water is a must to deal with it and eating.

I asked my doc why losing weight is such a problem, he said its because your body goes into starvation mode and it wont cope as well in that state, Iv lost a stone though..we all lose weight.

To get round strange and horrible tastes I got some swimmers nose clips so I couldnt taste anything to get food and drinks down and that really helped.

Dave

Hi Louisalbel

Am sorry to say hi in the cicumstances and hear about husbands symptoms around his treatment

As Dave says, treatment for throat cancer can be quite debilitating and its unpleasant as well as prolonged. 
The treatment itself you can cope with but the side efects can be really bad as you get hit with so many and sometimes all at once.
It is really important to drink as much water as you can. I was told by my team this is one of the best medicines during and after treatment. Its not only keeping you hydrated but its also using the throat muscles which is also important. All helps recovery process.
I cant really respond and lecture saying he should be does this and doing that because at the end of the day he is going to have to find a way somehow. I really do sympathise with him as ive constantly stuggled with weight loss and am still on Ensures and probably will get a telling off at this weeks appt.

Yout team will monitor his weight and will prtobably have to deal with as he is obviously not getting enough water and fuel in his body.. One Ensure a day is definately not enough and neither is one cup of water. At week 4 I was told by my team to drink 6 Ensures a day and am still on 4.

So i wish i could help more and if there is anything I can do then please let me know. If you want to request a friend Id be happy to chat one to one if it helps.
We are all different and react different to treatment in terms of recovery but as you can see by my thread the recovery period can sometimes be a little worse when the treatment stops.
Lets hope the Dietician can explain the benefits of more Ensures and water and at least that part is taken care of.
Its very difficult to remain positive and cheerful thoughout horrid side effects but Ive always held on to the fact its one of the most treatable and highest chances of cure albeit the worst treatment. so the odds are in his favour and light at the end of the tunnel.

Again, please let me know if I can help in anyway and I hope for both of you, that a resoluation, at least for body fuel intake, can be found asap.

Another note on water and eating - it doesnt have to be enjoyed and look upon it as medicine. Not all medicines taste great but you have to take them to help you. Its no different to food/Ensures and water. They are all vital medicines for the body during and after treatment.

kind regards
ian

H Louisabel

Thus is Hazel also on here as radioactiveraz I have written a blog detailing my experiences on www.radioactiveraz.wordpress.com ut seems to have helped a lot of people.

i am now 24 weeks post radiotherapy and still have some problems 

will pass my oncologist s words in to you this cancer is the worst if all cancers to treat the mouth and neck are used by out bodies 24 hours a day eat drink sleep but in a plus side we have the best chance of recovery. I was given the all clear in the 14 January oknall clear cancer free doesn’t mean I’m free still have hospital visits for nextb5 year s but in his words go swim in the sea ride my bike live my life. That’s what I am doing as I type this in Spain living. 

I couldn’t drink plain tap or mineral water for almostb2 months but I had a feedeingbtube and Jihn put that through  my tube younvpcan domthensame withbthe oeg make a cup of tea put honey in ut he can’t taste it but uts ex calories.

one guy who was being treated same time as me thus isn’t easy tinsay needed uo dangerously ill due to dehydration his kidneys were hours from failing  he onky needs sips through his mouth to keepmswallow fiction inended uo only on soda water but it worked  

please please get liquid into him  I Lost 2 stone and am inkyn5 foot I wasn’t taking 5/6 ensures he will need his strength as treatmentbis tough and he needs to be strong for the recovery phase 

Hazelhope i haventbscared  you keep in touch 

Hi Dave!! Thanks for your reply!! That's interesting using the swimmers nose!! So if you hold your nose you can't taste something disgusting?.... interesting! I'll suggest that tomorrow. 

Thank you for your reply Ian! I was overwhelmed by all the responses! My partner had a low BMI to start with and now weighs 60kg with clothes and shoes on, so you can imagine he's like a skeleton (almost 6ft). Well he had 3 ensures into his PEG today and a bit of water. Hopefully the dietician knocks some sense into him on Monday.  He's looking very frail.

Hi Hazel. Well done on the all clear!! Thank you for your reply and advice. I'm wondering if they might keep him in on Monday as he's very underweight and looks very frail (but only 46). Don't worry about scaring me, it's all very important stuff that needs to be taken seriously. Good idea about tea and honey. He tried green tea today, that was disgusting too. 

Hi Hazel. Well done on the all clear!! Thank you for your reply and advice. I'm wondering if they might keep him in on Monday as he's very underweight and looks very frail (but only 46). Don't worry about scaring me, it's all very important stuff that needs to be taken seriously. Good idea about tea and honey. He tried green tea today, that was disgusting too. 

Hi Louisa bel

as well as sparkling water get soda water it’s no minerals in it unlike sparkling water. You may guess over last 8 months become a water connoisseur! I found Schweppes soda too hard but supermarket own brands fine you’ll find soda in with the tonic waters and mixers. Another one to try is aloe water it’s expensieve from Holland n Barrett n needs dilutingvagsin try supermarkets. 

Also try almond milk in UHi cartons less gunky than cows milk. 

Push water through his peg John did 500 mil a time into me plus another tip keep a daily record or liquid and calories if u can. 

Hubby yours same weight as me 60 kg but he is a foot taller so understand your concerns. He really needs his food Ensure fresubin upping as later on in treatment it really hits hard

take care keep in touch

hazel