Consultant 'disappointed' - getting back onto solids

Hi TrevW

Well done for maintaining your weight - that's a great achievement.

I didn't have a PEG and had to rely on Scandishakes for nourishment.  It was not easy.  I did start introducing very bland and easy foods such as Ready Brek  and semolina quite soon after treatment but in small amounts and with an assortment of pain killers to help.  I found porridge too lumpy in the early stages.   I did however have a lot of support from the Speech and Language team with my swallow.  Have you seen anyone from this department?  If not, I would request that you do.  They will be able to assess how your swallow is functioning and suggest ways in which you can improve it.

With regards the swallow function, I still swallow in 2 steps especially liquids.

I don't think it's particularly helpful to be told at your consultation that they're disappointed without offering some support and advice.

Don't stress about being behind the curve.  We're all different!

Good luck.

Linda x

Hi Linda, thanks for replying

No i've not had access to a speech therapist, to be honest the consultant has not been very...engaged, he has his appointments spaced ten minutes apart and is ushering me out after 5 minutes. My only post op care is that 5 minutes every two weeks.

I will definitely ask for access to that department, its interesting that you swallow in 2 steps! i am pretty sure i didn't do this before radio, but its not something i gave a second thought to before

No, I also didn't do a 2 step swallow before radiation.  Swallowing is such a natural thing you just don't give it a thought until it looms large! 

Definitely worth asking for access to someone for advice re your swallow.  Do keep in touch as to how you're getting on.

Linda x 

Hi Trev. 
as Linda says we are all different. Six weeks is still early but all your consultant is doing is giving you a kick. By six weeks I was eating porridge (Ready Brek which is very fine) but it wasn’t pleasant. It was a case of just getting it down. 
Try poached eggs. They usually slide down much more easily than a thick liquid like porridge. Tinned peaches are good too. Anything with that sort of slimy Consistency. 
And yes. I had to double swallow even Fortisips and tea for quite a while.
I think if you try and get your throat used to actually gripping something to swallow you’ll progress quite quickly. 
Best of luck and let us know how you get on 

Hi

What a shame you haven't had a speech therapist. They are full of usefull exercises to help with your swallow. I agree with Linda and Dani about the 2 part swallow. I think I did this early on as a way of not wanting stuff to go down the wrong way. It is now less noticeable 1 year on. I also lived on peaches swimming in cream and found porridge a nightmare. Little Petit Filous yoghurts were good too as small enough not to be overwhelming. I had 1 dietician who used to cheer everytime I kept my weight on and another who used to chastise for everything. Guess which one made me feel positive !

All the best

Tricia

Hi Trev. It’s a shame yiu haven’t had access to a specialist swallow nurse mine was very good.I was trying solids  only  mushy stuff very soggy weetabix, poached eggs were a firm favourite, on cheap white thin sliced bread toasted with lots of butter .toast Dow foe down easier than bread , bread takes a good while. Toasted fruit tea cakes with grilled cheese on are also pretty good.yes two,part swallow is quite common in the early days ,I used to use like warm tea to help food go down or water for a good while 

glad youve pooped back onto forum Hazel x 

Think you doing amazing Trev. I’m week 4 of treatment and now having just ONS and maybe a bit of ice cream - I will de delighted if I’m doing ok like you 6 weeks after finishing!

Good evening Trevor, as long as you are happy with your progress then all well and good, we all recovery differently. Dont force your eating as it will come naturally so dont feel disappointed as you are doing as well as can be expected. I just done it gradually trying different things,as the others have said maybe a speech and language therapist or a dietician will be able to help. Dont be disheartened as you are heading in the right direction. All the best, take care.

                                                                                          Chris  

I’m almost six months post treatment and still have my PEG. I’ve only been managing very wet, soft foods for the last two months, and still rely on Ensure feeds through the tube for lots of my nutrition. The lovely HENs (home enteral nurses) say it takes as long as it takes. I’d say your consultant’s disappointment is not your problem! 

Bestests,

Louisa