Help and advice needed - Radiotherapy/Chemo

Hi Sue I had first n g tube in forc3 weeks a few moments discomfort putting it in but otherwise never felt a thing. My cancer hospital s policy sss ti change every 3 weeks so that was taken out quite painless s matter of seconds thrn next one fitted. I preferred to feed during daytime so had a rucksack thst pump went in and fed as I wanted to. To be honest it was a lifesaver for me. After the next  3 weeks I was able to feed myself and took it out under supervision from Macmillan nurse. What the tube did for me was take away the worry of trying to eat while allowing me to try to eat small amounts   
My husband used to check my p h level before every feed an easy thing to do with syringe.

Hazel 

Hi Sue. I’ll follow Hazel. The other alternative is to give the feed yourself bottle by bottle ( they say you need six) through the day which is what I did till I got a pump delivered. I had mine at night so I didn’t have to bother with it during the day and just played with what I could eat without worrying I was getting enough calories. Of course you can achieve the same protocol using a stomach tube. Like Linda I didn’t have a choice. Hospital policy is reactive NG tube. I don’t envy your decision but I hope you get there without too much angst. Good luck. 

Hi Sue, its a hard one but i have always been fitted with a PEG and have had to use it on every occasion, personally i think its advisable to have one fitted just in case you start to struggle with swallowing and if the pain gets to much plus they are more discreet. As the others have said there is always the option of an NG tube which  Dani and Hazel had fitted and i believe it is quicker and easier to fit . Its nice to be offered the option of having a PEG fitted as some dont get the option and have struggled. Hopefully you will not need a NG or a PEG feeding tube and the side effects are minimal. Wishing you all the best with your course of radio and chemotherapy, take care.

                                                                                               Chris x

Sue.....One last thing. Please ask how quickly you are guaranteed a nasogastric tube if you need it? I know of people here who have had to fight to get one when they ran into trouble.......... maybe due to Covid constraints........who knows?

Thanks Dani yes another valid point I am due to speak to the team on Thursday so I will ask about it then.

Thanks again to everyone for their invaluable help and advice.

Sue

Hi Sue. I have just finished week 2 of 7 chemodadiotherapy. I was advised to get a PEG tube fitted ahead of trreatment starting and I did so, three weeks ago. I would say that it is uncomfortable and a bit of a nuisance. I haven't needed to use it yet but I am glad I have it in case I need it later on. I wouldn't have liked to have the procedure done after starting treatment as I think it would have been a lot on top of feeling less than 100%. I was told I could have it later though. My team tell me most people use it at some point - some earlier than others..I guess there is no one size fits all answer for any of this ! For me, the procedure to insert it wasn't too onerous and I didn't have a lot of pain, just a bit of discomfort, and maanged without any pain meds.  Hope this is of some use. I didn't hesitate but I do feel well advised by my team. 

Best, John

Hi Sue

Hope your chat/appointmernt went well and you are step closer.

Hi, Sue

I hope your treatment goes well. I went to Teesside for my treatment and they were not inserting PEGs due to covid and I am glad as I desperately didn't want one. At week 5 I'd started to struggle and lost a lot of weight so the dietitian had me go for an NG tube. It wasn't nice, didn't always work and I had to go to A&E to have it removed as it had moved. That being said, it probably saved me from being hospitalised as I was in a bad way for a few days. Given all that I would still say to anyone, if the medical team say you need it, do as they say. It will help get you through the hardest period I I believe it helped me recover quicker. 

Thanks for everyones help with this. I discussed with the team last week and they were pretty much on the fence with either option but felt it likely I would need something to help with food etc.So opted for the PEG which is being done this week and then I start treatment next week so I hope it all goes to plan!  Chose the PEG as a bit of an insurance option so that I hopefully can avoid admissions whilst undergoing treatment and also I am a bit concerned on how things will be in the next few weeks with COVID situation. 

Thanks again to everyone - the support and advice on here is marvellous.

Sue

Thanks John for your help. Sounds like you are doing well with your treatment which is reassuring to hear.  I have just posted to say that I am going for the PEG too ahead of treatment, good to hear the procedures isn't too bad as having it done this week and starting chemoradiotherapy next week.

All the best with the rest of your treatment I hope everything goes well.

Sue