Hi , first post

Hi Sharon. I'm so sad to see you here again.

I had an NG tube from week four

I found feeding by syringe five or so times a day laborious and time consuming so I fed slowly by pump overnight. These pumps are small and fairly quiet ands easy to set up. Nutricia delivered a box when needed. I plugged the giving set into the bottle attached it to my NG tube and away it went through the night. It left me free to get on with life in the day. 

You have to check the tube is in place every day but it's easy and you'll be shown how to do that

The tube is squash able and doesn't affect the mask

Taste? for me six months but a year before I could really say I enjoyed my food. For a good few months I had no appetite and could have forsaken food entirely

Thank you so much for your reply

my husband wakes up every hour during the night with mucus he has to get rid of so might be wise through the night 

Did you have just radiotherapy? Not sure why they didn’t do surgery on husband ?

Also, how long did you have the tube in for ?

Thank you in advance 

Sharon

Hi Sharon. 
Tube was in for 8 weeks. 
I just had RT. 
Properly targeted RT does the job, so don’t worry about it not working. . He’s lucky he didn’t have a neck dissection. That leaves long lasting problems. 
Im fit and well four plus years after treatment 

Hi Sharon

I had an NG for about 5 mths, i now have a RIG.The NG takes a little to get used to, but it's easy and becomes second nature.

The length of time it takes to feed can vary, depending on what suits you.

You can feed during the day and break it up,... lunch, dinner etc, if you want or, as i do i feed at night. I set the machine over 10hrs so it runs in the evening and over night while i'm asleep. I could set it for a shorter period if i wanted to.

You can also ask for a special rucksack that you can put the feed, and pump in so you can feed while you are out and about, it just looks like your carring a rucksack around. People will stare anyway at the tube, i had that, but i'm famous for my  'death' look' which soon stopped them !!!!!... not that i gave a monkeys anyway, i just liked doing it to see their reaction .. !

Some people find they feel sick and bloated after a feed. In which case you can slow the feed down over a longer time and or feed  2/3 times a day which will help. Your dietitian will be explain everything. You'll get everything you need delivered to you, usually a months suply of tubes, syringes , feed etc. you won't need to get anything yourself.

Have a look on Youtube, i'm sure there's videos on there showing them.

It doesn't effect the mask either. I had two weeks of palative radiotherapy whilst mine was in.

Unfortunately taste... is how longs a bit of string, everyone is different and radiotherapy can effect people differently.  

Please feel free to ask me any questions.

Good luck.

Cat x

Hi Sharon sorry you’re here for your hibby no issues with ng tube and mask. My tube was fitted end of week 3 o had it gif 6 weeks in total. Calories are important I fed during the day gif me that was my choice I had a ruckdsk and pink. Not all of us hsve surgery ud hubby HPV positive? Chrmo radiotherapy I’d the good standard tres. As for food we are all fifteenth food is fuel was my motto forget about pleasure and he will get there eventually. My oncologist said he would cure me he did he also said it woujd take a year out of my life he fic. I’m 5 years almist snd happily living. Look at my blog 

Hazel x

Hi Cat

Thank you so much. That’s really informative. Gosh 5 months is a long time .

They have told us he should sit up whilst feeding but you sat you did it overnight ? Did you have to sit up sleeping ?

So glad you are now recovered and living life .

We were hoping ti go on holiday beginning of November or December but not sure how realistic that is ? 

Thanks again 

Sharon 

Hi Hazel 

Thank you for your reply .

sounds similar to my hubby . Hpv involvement, 35 radiotherapy but no chemo 

Glad you are now Ned and living life . I will take a look at your blog later for sure 

Sharon x

Hi, sorry, forgot that bit, yes you do have to sit propped up to stop reflux. Again it takes a bit of getting used to. I use feather cushions and pillows, snuggly !

It is a long time, but mine is one of the exceptions and is a permantant arrangement, that's why they changed it to a RIG. 

I was diagnosed Sept 22,  I'm not able to have the operation because my lungs were stuffed due to a fungal lung infection, Aspergillosis, back at the start of our first lock down,  i wouldn't survive the lengthy operation, so i am just having palliative care.

I have a short wheel based transit that i have just finished having kitted out as a camper, I had my first proper weekend away in it a couple of weeks ago. so your holiday shouldn't be a problem at all.

Cat x

Thanks so much. I find the experience of fellow patients invaluable and so helpful /informative.

So glad you got away 2 weeks ago and hope you have many many more adventures

Sharon 

Catmarel said:

I have a short wheel based transit that i have just finished having kitted out as a camper, I had my first proper weekend away in it a couple of weeks ago. so your holiday shouldn't be a problem at all.

Cat x

Wow Cat. That’s amazing. You should post us a picture of it. Have you given it a name?