Bowel and Tonsil cancer update

Oh Amanda you have been through the mill. What a very difficult time you have had and yet here you are upbeat and still going strong. You are a real role model. Glad to hear things are progressing well for you and congratulations on being able to eat again that is amazing progress. Wishing you continued good health and hope that the difficult days are behind you now.

Lyn

Thank you.Like I say I still have my PEG and put the Ensure drinks through.I really don't like the taste of them.wish I did as I ask to have my PEG removed. Its just frustrating that I cant eat properly at the moment  but then I'm trying to run before I can walk as people keep telling me.

Hi there Amanda,

What a fantastic attitude you have, especially considering everything you've been through.  Amazing.

Did you meet Debbie in hospital or online?  Whichever way you did, it's great that you've struck up a friendship through something that would have made a lot crumble.  I've also made great friends with folk here, as we share a common bond with our experiences and find it helps enormously to share them with each other.  It's really kind of you to offer help and support when you could probably do with some yourself from time to time.  But hey, Debbie sounds like she's filling the bill there.

I echo Lyn's words on how well you're doing with eating - maybe hang on to your PEG a little longer till you're further down the road to recovery?  And slow down; you can't do everything at once.

Anyway, lovely talking to you, Amanda and I'm wishing you all the best in your continuing progress.  Please do keep us updated on how you're getting on.  You're an inspiration.  Well done you!

Gill xx 

Thank you Gill for your comments. I met Debbie on here.she has been an amazing support for me.Yes I think my PEG will be here for some time yet until I can eat much better than I'm doing right now.A few weeks ago I couldn't eat 1/2 a weetabix but now a whole one every day.It just takes time and I have to realise that this is a slow long process. 

That's the spirit, Amanda.  I'm my fella's carer and when our journey started, eight months ago, I was the same, wanting everything to happen yesterday!  But, I began to realise nothing could be rushed and would take a long time, so I learned to be patient and found that helped enormously.

So you made friends with Debbie here too?  It's a great place to make good friends, that's for sure.

Have you seen the time?  It's gone 1 am!  We must both be crackers but if you're having trouble sleeping, for whatever reason, have you tried the Awake and up all night forum?  I'm rubbish at getting off to sleep so usually head there when it gets late.  I'm actually going to have a good go at getting my head down soon so will resist the temptation.  You should try for sleep too as rest also helps recovery.  Has Debbie got some sense and nods off at a reasonable time?  If yes, I'm going to follow her example and try for some zeds.

Now you take care and look after yourself.  Night lass x x 

Hi Eliza. Have you tried an alternative to Ensure if you don't like the taste of them? There is quite a range out there. I had Fortisip and they tasted O.K. for me although I know others don't like the taste. I am now using Sustagen as I can buy it from the chemist and not order online. They have coffee flavoured and my favourite, caramel. That means if I run low I can easily get some. There are a whole range of flavours. I put it on my cereal to keep the calories up. I have heard of others using Skandishakes but not sure what they are as have not tried them. It's amazing whats available online.

Lyn

Hi Lyn and Amanda.

My fella still gets his supplement drinks on prescription, every month, and they're delivered to our door.  The supply is more than enough!

He's never had Ensure; at the start he had Fresubin and Fortisips and liked both equally.  Now he just gets Fresubin, in a few different flavours, and apart from just drinking from the bottles, I add them to his cereals and coffees to keep up the calories.  I was told at his clinic last week some authorities are going to stop supplying these to patients.  We haven't heard anything from ours yet.

Amanda, if you don't like the taste of the supplements, do you use your PEG as a conduit?  When he couldn't eat or drink, we used a bolus syringe attached to his RIG to get them into him.

Gill xx 

I put all of my Ensure drinks through my PEG. I'm eating small amounts but not enough to sustain my weight at tge moment. 

Hi Gill. That is great that your husband is able to keep the calories up using the drink supplements in inventive ways. Hope that your authority keeps delivering them on prescription as it can add a bit to the budget otherwise. Unfortunately here in Australia they don't provide supplements on prescription so I have always had to buy them myself. I do find buying Sustagen at the chemist is cheaper than buying Fortisip online. It is good that it still has the same amount of calories and ingredients. I've had to work it into the budget so every cent saved is a help. 

Lyn