The scan results are in

MEKKIE said:

just getting the supplements via his PEG doesn't seem enough to mentain the weight.

Hi. He should be on 3000+ Calories a day. That is 8 bottles of Ensure or Fortisip. It seems a heck of a lot if he is bolus feeding so maybe he could ask for a pump to drip feed overnight. I did this and it left the day free for me to try to be more human

How far out of treatment is he?

Depends on how much he is awake,between 4 and 5 bottles of Ensures or equivalent, we also got 120ml bottles of 3  shots, which have more calories, we can mix one of those shots with Ensure,(if this makes sense).I have been getting him HAUL protein ready made drinks, which his body tolerates and they go through the PEG with no problem. But as I said, it does depend on wether he is awake,still very tired.

Great news that the Lymph nodes have stopped the spread.

Hope treatment goes as well as it can , can be very tough to get through but it is doable for most of us.

Lots of support from your team (never a daft question).

Take one day at a time x

Debbie

Thanks Debbie,don’t think I’ll ever take anything for granted again. Will be avidly following this fab forum for advice and tips from people who know just what they are talking about.So grateful for the support as we enter the challenging months ahead x

I had awful constipation which caused me pain and anxiety, I had to get some fybogel off the Dr and he also prescribed me some cream as it was painful for a while after each bowel movement.it seems to be getting better slowly. I came off pain meds far too quickly which upset my system a lot.

Lots of things are thrown in our way , which can bring us down but we have to battle on , recovery is tough I'm into my 12th week post treatment and still using my feeding Rig but trying to eat bits along the way.

Hello Spider, my husband seem to be constipated at the moment,not been to toilet for a couple of days,went today to get him some Fybogel, had to get him the sachets,so he can take it via his tube,swallowing is still a nono. You guys need a medal for what you are all have to deal with. All the best for your recovery.Mel x

Thank you Mel x

MRSMM said:

my husband seem to be constipated

Has he not been given laxido or Movicol? 

Hello, wasn't even aware that you can get anything like this on prescription, having said that, our GP seem to think we are asking for the world if we need anything, more then once I had to chase my husbands medication. My hubby really only just started to feel constipated,that's why I went to get him some relief,Fybogel did get mentioned to me in the past,so I thought he should try it,we have an appointment Tuesday with the nutritionist/speech therapist,I will bring it up then aswell. X

If your husband is on tube feeds they can prescribe a fibre one also , but I've started to use fybogel ,start slowly .Dr told me to start with 1 packet a day then increase as needed