Hi, my husband is in week 3 of his treatment and having great difficulty eating, we put Ensure through his tube slowly but he brought it up again. Does anyone have any ideas or suggestions as to what we could try fir him to eat please? Thank you

That can’t be right. What hospital is your husband at? I’ll have a look for a Macmillan clinical nurse specialist for you. 

Re the pump. I didn’t have anything by mouth for six weeks. Everything went into the tube either by pump overnight or through the day. I could never manage a whole feed via pump. Just took 500 to 700 mls and topped up in the day if I felt like it 

Hi I didn't have the pump so can't really help on that I'm afraid .. I am really sorry that the dietician is being unhelpful.

I never saw a nurse either, just a dietician to be weighed and given a grip strength test each week. But I was given a Macmillan nurses number to use if I had questions... Have you not been given a number?

I really hope your husband gets to grips with his tube

Trev

Do you know Trev I feel so sorry for folk going through this right now. So many short cuts. Not to treatment but to support. Pre Covid I was lucky enough to see full support staff once a week with guaranteed CNS contact by phone or email. 

When i read the experiences of those who went through this before covid it seems a different world dani.

I know how hard the NHS staff work but i didnt really have any support other than this board if i am being completely honest. Actually that isnt quite true, i called the emergency number when i first coughed up blood and the nurse on the line was lovely and called me back to check on me the next day. The radiographer was brill too 

But other than that it was very brief meetings with my consultant and equally brief visits with my dietician to be weighed 

And of course my initial misdiagnosis of tonsilitis cost me several weeks time because the doctor i went to at the walk in centre decided to examine me from about 6 feet away due to covid  (i had to kick up a fuss to get re-referred)

I know the reasons, covid pressure and cant be helped.

Hi! I stopped eating after 2 weeks treatment and have had varying success with the PEG and pump. Are you using the plunger or just letting gravity allow the food to go through the tube? When I stopped “forcing” it in and just letting it go in slowly, I felt much better. Think of it - your body is used to food being chewed and swallowed in the same way for years. This is all new with it going in through a small hole in your stomach! 

This sounds so familiar. The radiographers were my first call and I couldn’t get in touch with anyone else when I needed it. You are always having to be proactive - not easy when you’re ILL and have had a devastating diagnosis. I’m one week post treatment and am only having telephone contact which is difficult if you can’t speak! 

According to what I have read on here, it is a different world to pre 2020. The help on here can be invaluable and it’s given by people who have been through similar things and say how it feels. Best of luck! 

To be honest Dani I discovered support was patchy depending on the hospital before Covid.  It's even more difficult now.

Linda x

He has now been put on a pump for his feed which he is on all day

That’s why I have been trying to talk to people that have been ir are going through the same cancer as my husband as I don’t seem to be able to get support from anywhere else