Advice for mum re food/drink wk4 RT

Hi Kate, don't put off the inevitable.. get the tube fitted, and pump feed overnight.. there are no badges to be won by 'toughing' it out.. things are going to ramp up now that you are this far down the line.. I certainly wish that I'd have started pump feeds when I first felt the need.. 

Hi. And welcome. If determination through the awful pain is what is going to get your mum through then you sound just the loving daughter to help her so well done coming here. 
The internet is full of high protein high calorie shakes so you could start there. 
A good one to have a go at is Avocado/Banana/ peanut butter and whole milk or ice cream. Sounds awful but I suspect your mum can’t taste anything anyway. 
Me? I had an NG in week 4 and fed by pump overnight leaving the whole day free to try to be with the rest if the world rather than a cancer patient. 
RT continues its effects for 2/3 weeks after she finishes is something to bear in mind. 
Hugs to you and mum. 

Beau Chapeau said:

there are no badges to be won by 'toughing' it out.

Yep. Having that NG and pump made it so much more bearable. I couldn’t imagine having to force food down me 

Hi Kate, your mum really does need to consider having the NG tube sooner rather than later. Not getting enough nourishment will only hinder her treatment and slow down her recovery.

Ray.

. 

Hi Kate,

As someone who has very recently come through tonsil cancer, with tonsil removal and 6 weeks of Chemo and RT, I do not think that determination alone will do it.

I was also keen to try and not use my PEG tube and to take shakes and Fortisips orally, but there comes a point (for me a week after RT finished), that oral intake was as good as impossible. Just too painful.

For about 4 weeks I got into the routine of PEG feeding 3 x fortisips in the morning and then 3 in the evening, totalling 2,400 calories a day.

As this is relatively pain free, it allows you to concentrate on resting rather than extensive pain management at meal times.

Highly recommend you advise your mother to take this approach to the final weeks of treatment and the weeks immediately following.

She should be back orally feeding 3-4 weeks after treatment finishes.

Best wishes for her recovery and best wishes to you as her support.

And please do come back with any concerns during this tough time for her.

MickyC

I’ve had a good chat with her today and she is going to speak to the team on Monday about the tube. She will be guided by them but I think she knows a corner has been turned and it’s time to at least get more information about it.

i didn’t realise that she would have to be admitted for a time when she gets it done. To be honest she would probably benefit from the company and the constant care! Thanks for all your words x

Katej5833 said:

i didn’t realise that she would have to be admitted for a time when she gets it done.

A lot of us don’t. It depends on the circumstances.Some patients can be taught how to care for the tube as outpatients and it takes minutes to fit.  I knew I would have to have one but I didn’t realise how quickly things would come crashing down. On a Friday morning I had my RT and things weren’t too bad. By nighttime I couldn’t swallow anything but razor blades. I didn’t have any decent pain relief , just co codomol, and as a result I swallowed nothing at all till my next RT on the following Monday. I was pretty dehydrated so I had to be admitted for a drip. It was New Year’s Eve so no dieticians about and ward staff have no clue about feeding tubes even in a cancer ward. It was the 4th ( my birthday) before I got home. Armed with a feeding plan, waiting for a pump and a bag full of morphine I was a changed woman and in my way to a proper life. Hugs to your mum. .

That sounds awful.. mum has had pregablin , liquid paracetamol and the mouthwashes from the start and recently given oramorph (used once so far) so she’s had her pain managed (ish). They’ve weighed her every Monday and so far she’s been fine but I can’t imagine that 1 weetabix and 1 egg scrambled a day will suffice and even they aren’t going down now!! 
…she is using the fortisips and hopes that tomorrows weigh in will be ok. We’ll see what the experts say. Don’t know about the admittal to hospital other than that’s what we were told. Maybe her age? 

I had a PEG feeding tube put in place prior to starting my treatment, I hated it but it was a life saver and certainly helped my recovery. Eating is difficult and painful to start with, I was advised to take Oramorph 30 minutes before eating by my dietitian and CNS, swill the Oramorph around the mouth and throat area before eating. Tinned macaroni was one of the things I found that I could do...Heinz variety had a runnier consistency and was a bit easier to swallow along with a drink of whole milk...some honey was also tolerable...anything with a calorie boost was a blessing.

I was on/am on pregabalin for restless leg syndrome, a legacy from antiemetics, the drug causes my dry mouth to escalate, I still use it, albeit very sparingly