trouble eating and drinking after radiotherapy

Thankyou for your kindness Kayleigh,it means a lot. I've just been talking to my GP and she said I mustn't be in pain,she has told me to use as much oramorph as I need,within reason of course,and has sent a scrip for slow release as well.

I'm so glad I got it together enough to post on here,I feel less alone.

I can't manage fruit in any form as the acidity is too painful but I'll try exploring smoothie recipes for one that I can maybe manage. Thanks again x

What good news for you,and thanks for the helpful information,Amanda. I don't know whether the medicine you had would help me,as I am okay to swallow,it's when it hits the rtx site that the trouble starts:intense painful burning that goes on for some time,but if you can find the name I could ask the team if maybe it would help.

So good to read that it was worth it for you,thankyou x

Ah,thanks Rosiee I can ask about Xantocaine x

I'm really pleased to hear that you have spoken with your GP. I do hope the increase in oramorph and also the slow release does ease the pain to a more manageable level for you. Do not be afraid to go back though if the dose they have prescribed is not hitting the spot. 

This is a sad and terrible disease and your not alone fighting through this tough journey so reach out as much as you need. Someone on here will always try and give advice which is heartwarming to see. 

Do take care of yourself and keep in touch. 

Kayleigh x

Thanks again Kayleigh. I can't say how much it helps to be able to call for help on here,because that of course is what I was doing in desperation,I really felt like I couldn't carry on but this has given me some hope and some very useful information. I guess none of us like to make a fuss and I know how busy people are and that we all have problems of one sort or another but this really is something else isn't it?

Painful and terrifying in equal measure and it makes me feel ungrateful to complain as the NHS is definately trying its' best for me. xx

Hi

I've been through my cancer files but I can't find the name - essentially it's the same product Rosie's mentioned, Xantocaine. My tumour was mid oesophagus, I'm guessing yours is lower down? 

Keep messaging, about anything and everything, we're all here to help.

Take care,

Amanda x

Thanks Amanda,I think Rosiee probably had it right. My tumour is also midway and it's neuroendocrine,I don't know how much difference that makes to treatment but the one bright spot is that it was very small when found and then shrunk to invisible with chemo. Unfortunately I had to stop chemo after 2 cycles as I got sepsis. Hence straight to RTX..x

god we are all going through it, thinking of you all, so treatment kicks off next week, found out quite quickly after chasing for an update, currently sitting here plugged into food pump, for jpeg line, mixed advice on what liquid meds i can squirt down the tube, its worse than watching paint dry, but is making me sleepy which will probably help as hardly any sleep again last night, just the amazon bags being used again.

dont know why i am so scared and worried about new treatment, few people have said well you had chemo and radiotherapy before, this will be fine, (well, apart from some horrific seizures that got me a blue light to A&E after 3rd chemo, and last time i could still eat. sure this wont be a walk in the park)  any one had any chemo at the churchill oxford, if so any tips, will do little recky when in monday for rtx, before chemo

try to explain to people its going to get even worse before it gets better, apparantely the oral thrush i have explains the really sore throat, tongue and ulcers, another med for the kitchen work surface.  such confllcting information given from the experts that are assigned to us, compared to the breast cancer, but then this oesophagus cancer is so more complicated and painful.

least the phone call to the bank reporting fraudent activity on our account killed an hour and 100 calories from percy the food pump, (thats the pc name people!)

god its a jules downer today so apologies, thank you all again for your support and just being there, means so much, this time next year ...............

x jules

oh jules,you poor thing,why wouldn't you be scared? Especially as it sounds like you have been through it before.sending best wishes and hope it all goes as well as it can. They are a lovely lot on here and it's so good if we can help each other.x

Someone recommended Biotene mouthwash in one of the discussion threads. I told my husband this morning because his mouth is becoming increasingly sore. He gets some relief from the 49p mouthwash he got from Tesco's. When I got back from work he was over the moon with his top end Biotene he'd bought from Boots. It was about £8 but worth every penny. Apparently it's moisturising.

Whoever mentioned it, thank you for the tip!