Reintroducing food after feeding tibe

Hi I had a course of auricular acupuncture which I’m sure helped to stimulate my saliva or at least kick start ut. I’m almost 5 years post treatment now I still get dry mouth in occasions and use xyimelts at night time I now resigned to what uve git which is adequate it’s nit as good as pre treatment but certainky far better than it was. Winter time is dryer than summer time for me. 
iHazel x

Hi Matt.  I also was expecting a speedy recovery and when it wasn't happening i got very down. My mcmillan Nurse insisted I take an anti depressant which I fought against until she wore me down!! For me sweet and spicy were the first tastes to return.

Oral hygiene is very important for the teeth. I see my dentist and the hygienist regularly and I also use high fluoride toothpaste (Duraphat 5000) on prescription from my dentist

Keep positive

Ivan

Chemo Chaos said:

A friend of mine does acupuncture of which I was very sceptical until I had a trapped nerve last year) & apparently this can be used to stimulate saliva as I would like to keep as many teeth as possible

Have look here

Acupuncture 1 and here Acupuncture 2

Both posts have a discussion with a few contacts. Might point you in the right direction

Hi Sophie

Many thanks for your reply, just a follow up & I very much understand that each case is very different but when did your taste come back & are you still eating soft foods 2 years on are you more back to "normal" now

How is the saliva situation (which is not a question I ever envisaged asking?

Thanks 

Matt

Hi Matt. Lyn is in OZ and scheduled for surgery tomorrow so will likely be awol for a little time. I’m sure she will get back to you when she can 

Hi Matt,

I had a RIG, which I used for Fortisips from wk5 (of 6 wks treatment) but I drank water and took meds 100% orally to ensure I didn't loose my swallow, which helped a quicker recovery when I did start trying to eat orally. 

I just listened to my body/throat, when eating again. Started with porridge, Readybreak, soups, smoothies, rice pudding, custard from week 3 and whenever I experienced mouth soreness or flare ups I just eased off. I combined eating orally with using the RIG for a few more weeks and eventually just stopped using the tube, apart from flushing it every day.

I finished my treatment  12 August and by 11 November I was having a 4-course meal and a glass of Champagne on my birthday. By Christmas I was eating a full roast (smaller portions than previously). My go-to meats/fish remain the same today -  salmon, lamb, pork belly, rare fillet steak - other cuts and chicken are too dry.

My advice is to keep trying and stop if you need to, then start again. Alternate tube shakes with oral softer foods first and eventually as your mouth / throat heal you'll be able to eat more and start to lower the shakes and meds. I was taking oramorph for about 4-5 weeks then just paracetamol and ibuprofen by the clock.

Hope this helps - keep eating and don't be afraid to leave it if you're having a crappy day, then get back on it the next day

Helen xx

Hi Helen

Many thanks for your reply & much of what you are saying is what I am in the early stages of experiencing (so it sounds like I may be doing thinks ok) I am keen to reduce my meds but seem to be cut off a bit by the nurses (yep you are doing really well see you in 3 weeks) but hearing from you guys is the reassurance I need (If i had ANY saliva I would be drooling at the thought of pork belly!)

You sound like you're doing really well and I wouldn't worry about reducing meds yet, much too early! So just revisit in 2 weeks and see how you feel... And there are no hard or fast rules - listen to your body and if you reduce meds in week 4 or 5 into recovery then feel you need oramorph one night middle of wk6 or wk10 - that's what it's prescribed for! I had a few nights where I took it late at night as a one-off after not taking it for weeks, to deal with a particularly sore mouth or a sore throat. You'll find your mouth recovery goes in cycles in the same way that your taste buds come and go. You'll start to listen to your body and healing cycles as the weeks & months go on. Don't wait to be in a lot of pain! Be kind to yourself

Pork belly and lamb taste great at the moment and I'm even starting to get my sweet/sugar taste buds back again. But in general my sweet tooth has definitely gone into hibernation (after 3 bites of toblerone it tastes of nothing!), which is probably a good thing as it gives me a natural cut off, otherwise I'd eat a whole bar LOL!

hx

Hi Matt

Sorry for the delay in getting back to you but as Dani said I have been in hospital having an op to reconstruct my upper jaw.

My cancer is quite different to yours and the info I gave you about food was in relation to what I manage in my current situation which is not like yours.  I have been on the cancer journey for a while now so again quite different to the norm. A one off treatment and cure is a much more common scenario which I am sure yours is.

 I had radiotherapy in 2013 and 2019 as well as a few ops but would like to reassure you that after my first op and radiotherapy in 2013 I got back to fairly normal eating although I found with my mouth being a bit dry that foods that were moister or with gravies were much easier to manage.   

It was a bit of trial and error but you find what works for you. The dryness in my mouth improved over time but never completely disappeared and I still needed sips of water and a dry mouth spray from time to time. Since then I have found out about Xylimelts and they work much better than a dry mouth spray.

As you have said everyone is different and some people get their sense of taste back completely but mine was always slightly altered. However I found new tastes that worked for me and that I enjoy.

Your road is different to mine but be reassured that things definitely improve in the taste and saliva department over time although things may be slightly altered. You just can’t rush it.

Lyn

Hi Sophie

Many thanks for your response & really no need to say sorry it sounds like you have more than enough going on without responding to my stupid questions. You & many of the others I have found on this site are both inspirational  & humbling so I can't thank you all enough - plus I get to glean lots of cheats & hacks to help me through (I have already written down Xylimelts in case I need them.

Thanks again & wishing you the very best from your op, I would say stay strong but it sounds like you have absolutely got this!

Doubtless another daft question won't be far away so stay logged on!!! XX