Hi Paula thank you have been using them on and off s full one us too much so I cut them in half n put one in when I go to bed n one when I wake up. Am ok in daytime it’s night time saliva thickens n sticks. Thank though for thinking about me. 

Hazel x is arrived in Spain today some r n r and bit of gentle biking xx

Hi Paul 

Pain has all but gone now and was controlled with paracetamol syrup, Fentanyl patches and Oramorph. 

I still take the paracetamol about 30 mins before food.  i do get dry mouth that makes talking difficult after about 5 mins but it is much worse at night when I start to breath through the mouth. Thickened saliva is also an issue, bought some OTC Saliva spray that helps then prescribed Biotene Gel which I didnt find as good as the spray, so will try again with your tip of rubbing it in.

I didnt have a feding tube and went from 91kgs to 77kgs, the main problem for me was the muscle tone loss and things going south and I suppose that will take a long time to build back up. 

My taste has started to return but as im sure you know it is not consistent and a bit up and down and different shall we say. 

All the best to you 

Ron 

Ron,

Thats a heck of a weight loss and, as you state, including muscle! I sincerely hope you manage to turn that around.

I figured I needed to focus on the  fluid intake to 'survive' but still fell well wide of the mark for what the dietitions asked. I actually avoided them at my last assessment visit. They are so encouraging and cheerful. I just couldn't do it.

I managed to put on a good a bit of weight leading up to treatment by eating like crazy. Somehow and despite not eating enough since my weight has hardly dropped and still a bit podgy. Maybe dropped 6-7 kg but then had put much of that on just before in anticipation. I think I have been so inactive in the last few months I havent burnt it off. My clothes still fit but maybe better now with a little room to spare.

I was a bit wary of the opiate type pain killers as they tend to mess up my guts and slow everything down.  One week I went for assesssment and was weighed. The assistant remarked that my weight was the same. I told her that was probably because I was so full of ****.  

I too had a dry mouth at night on account of finding a good side position sleeping with my mouth open. However not been a problem recently. Nothing but bubbly sputum and phlegm at the moment.

Do try rubbing in the Biotene Gel. The pharmacist was most insistent that it  was important and would make a difference.

I am interested in how others recover their taste. It certainly worries me that people are well into recovery and still having taste issues.  Everyone says its a matter of settling in to the new 'you'. I do gather it comes and goes. I am hoping for the 6 -12 month taste recovery suggested by my consultant. I am building up a long list of almost everything edible that I want to eat again.
Losing taste is really weird. My wife was making a batch of christmas cakes and I tried a dollop of the icing sugar. It tasted of nothing. No sweetness at all and maybe a little salty.  Very strange.
 

I was flexitarian before all this and to try to get nutrition in now have just found over the weekend that some meats seems to work.  Although it takes ages to get my mouth sorted afterwards. I need to experiment more but finding mouth ulcers the biggest problem. That and barely being able to talk.

Post treatment  (about 10 days)  assesssment tomorrow.

Paul 

Hi Paul,

You may find that the weight loss is still to come! I lost almost 16kg starting about ten days to two weeks after treatment stabilising after about ten weeks...i hope that isn't the same for you you sound like  you are doing amazing...

Good luck

Hi Paula 

Nice to know not the only one to lose a fair bit.  I was not surprised to be honest from the amount I was eating prior to treatment to what i can manage now. I have put a couple of kgs back on so seeing any food as medicine really. 

Good Luck 

Ron 

Hazel!!!

That's fantastic! I am so happy for you! Can't wait to hear that myself.

You have been so helpful and given us all good advice and support. Run free and be happy!

Allie x

Hi Allie

certainly am doing wecare in Spain living our life’s likevthe Oncologist said ,ride your bike swin in the sea sunbathe safely and live. 

Goid luck to you as well Hiw far down the road are you. ? Any questions or if I can help just message

Hazel 

Hi Allie

just a quickie I had the tube fitted on week 4  apart from the food issue I was having great difficulty taking the tablets in liquid or tablet form and I needed the painkillers as it’s around this time the pain set in. 

I am 5 ft and weighed 11 7 lb at start of  treatment. Ok piled 10 lab on while waiting but the main advantage of the  tube Allie is liquid and more liquid . I took the decision to be in charge of the dieticians and asked for the tube before they took it out of my hands. I found I still lost 2 stone and now 9 st 7 lb am niw 21 week,post radiotherapy and still 9 st 7 lb. honestly Allie not everyone needs the tube but if all you are  getting His nutrition from soup it’s not a balanced diet and the radiotherapy does take it out of you later combine s with the chemo I had 2 sessions if chemo oncologist took decision that the 3 rd session would do more harm than good as my lymph nodes had disappeared.

the first tube was in  1 month and the second 15 days . The only thing I can say for the tube apart from feeding me saves my life and stopped the hubby worrying that I wasn’t drinking enough as liquid is just as important as food .

if you go for the high calorie drinks I had Ensure couldn’t stand chocolate or toffee or coffee ones  but again individual tastes another tip e quite gloopy and thick I diluted them with wayer after i came off the tube 2 fold u get extra hydration as well 

nit meaning to lecture just telling you what I did ,hopefully you don’t have to go down that route  but it’s not that bad if it save s you later 

Hazel

Thanks Paula,

Latest weigh in yesterday revealed another kilo drop. This new year diet seems to be working too well. 

A few things from my latest 10 day post treatment assessment with the oncologist and dietitions:

I have been using my PEG quite a bit over the last month as the radiotherapy was biting hard into my throat.
But this last weekend was great. The painful throat was much better and so could swallow ok without too much agony. So I had a day without using the PEG and got a few meals down together with lots of fizzy water and no caffeine diet coke. 

The oncologist said that if I could maintain my weight without using the PEG for two weeks then it can be removed.  I dislike the PEG very much so will set about this week aiming to do exactly that.  Of course my next follow up with ENT is in late February so I am now on my own in that respect. But if I can get to that point and show I am good then can see the possibility of getting shot of it.

The dietitions seem happy for me to do my own thing. Their advice is great but somehow found my own way through so far. I mentioned the use of Huel and one of them had not heard of it. As a complete food I have been using that as meal replacements down my PEG using the Flocare pump they provided.. They said they do not recommend unapproved feeds. However they acknowledged that many patients really dislike the Fortisip drinks. For me they caused nausea, slight reflux and occasional vomiting. I found them too sickly and gave up on them fairly quickly.
There is another plain tasting feed that they would have switched me to but as I kept a low profile with them I had already organised a few big bags of 'original vanilla'  Huel to mix with milk. My daughter had been using it before and just seemed like a good option. Huel have a page on their website for patients suffering from dysphagia.I mention it here as I feel from my experience that it has worked well for me and recommend to others. I think I put the dietitions noses slightly of out of joint as was not following their recommended treatments. But everyone finds their best solutions and strategies. They thought it a good idea to switch to oral Huel for any additional meal replacements now I am going to try to quit the PEG habit.

So here goes. Week 3 post treatment and going to give it my best shot.

Good to read the updates from the people on here and hi from Cambridge.

I will have to try Allies recommended French Onion soup.

Paul