Will things always keep changing

Hi Lilian, You are about two years clear of treatment aren't you? I would say this isn't normal so I would bring your next review forward and get it looked at. I know you've struggled with your swallowing and eating for a long time. What did your last swallow test reveal? I can't recall how long ago it was.

It might be useful to pop some history into your profile

The 'new normal' for me is a fact, some things are harder to get down, takes a lot of liquid to help swallow some foods, especially chicken, beef, bread etc. but things are much better than they were 2 years ago, much much better.

We do take a step backwards from time to time, just a by-product of the cure.

M

I have an appointment with my consultant in 2 weeks time so I will see what he thinks Dani. I just got really excited about what I was managing to eat I had actually gone 3 weeks without a fortisip and my appetite returned 

Lillian

I really feel for you. You must be tearing your hair out. Hugs 

I find that my swallowing goes up and down like a yo-yo.  Sometimes it’s quite good, other times it definitely isn’t….and quite often I start a meal ok, but it’s almost as if my throat just gets fed up or bored (or both!) and goes on strike.  On bad days I top up with Huel.  It’s a bit depressing sometimes, but I suppose it’s just the new normal .  There’s not much I cannot get down with the help of a drink, but the enjoyment of food is, sadly, a thing of the past….something I’m getting quite good at disguising as I don’t want to be a dampener on social occasions- or even dining a deux with my husband.   I’m trying not to let it bother me too much.  It will either eventually improve, in which case, great….or it won’t, and this will be as good as it gets… which would be a bummer. 
Liz

How long is it since your treatment finished Liz, I had my last RT 2 years ago and my peg removed about 6 months ago.

Lillian x

I finished my treatment just before Christmas 23 so am coming up 14 months down the road.  I ditched the RIG - possibly unwisely- a year ago, but I felt I needed to cut the umbilical cord…..and we had a trip to Cyprus booked and I was determined to get rid of it before going. Vain or what?!

 I do empathise with what you’re experiencing.  I just hang on to the thought that the good days do outnumber the bad if not by a huge margin, and that there seems to be no physical reason why the bad days are bad…and thus no reason why they should stay bad in perpetuity.  But it does feel sometimes like being in a country where you don’t speak the language, trying to drive the length of it with an incomplete road map and finding that everyone else on the same journey seems to have have a different bit of it.  The beauty of this forum for me has been the willingness of othered to share their bit of the map.

 I hope you soon get back to your previous level of swallowing and this is just a glitch.

Liz

I totally agree with you about the map scenario, I have not spoken to anyone that even though they have been on the same journey as me, have had the same side effects as me.  
 The RT affects us all differently and we all have our own roads to navigate with different outcomes so we just have to take it day by day.  
 Thank you for your time and support, I really appreciate it. Take care Lillian xx