Swallowing

Lindielou said:

does that mean that you actually stop having the ability to swallow at all or is it just food? 

You don't lose the ability. For me it was just really painful so I gave up anything orally. BUT I did exercises to keep the muscles working. I could swallow liquid but it just hurt too much so I didn't. By six weeks after RT I could manage Ready Brek

Thank you for reply. You are all lovely explaining stuff to us newbies. Think I'm just getting very anxious about it all which I guess is understandable.

Don’t worry too much. Things will slot into place and you will manage. Dont be brave. There are no medals for enduring pain. Tell your radiographers how you feel every day. Pain can be managed but you must tell them what you need. Hugs. 

Hi Lindielou 

After weeks 2-3 I found it very difficult to get anything down orally.... PEG became my lifeline, my CNS told me to swallow water daily even if it was minimal sipping .....hydration is imperative to our recovery either via PEG or orally, swallowing it orally helps maintain a good swallow function as treatment is hard on the muscles that control the function .

Not everyone is going to be hit hard with the side effects.... some people can tolerate the treatment better than others.

Peter 

Good evening Lidielou, you will still be able to swallow it's sometimes its a struggle or uncomfortable to swallow whole food, you should be able to swallow liquids. Hopefully, you will not have to use it but it will be a godsend if its needed. All the best 

                                              Chris x

Hi don’t worry too much do your swallow exercises and take it day by day. Hydration and nutrition are vital and keep team involved they are there to help don’t t fear the peg if you need it you  need it don’t be brave. We do t loose the ability tj swallow but it can hurt more then you could imagine now. . I still do my exercises daily and have not had any issues in last 7 years. 

Hazel 

Hi I’m currently on session 22/30 (week 5/6) and still managing weetabix and soup every day. I could eat more but have no appetite and my taste buds are giving me quite hoReid tastes. I also put 3 feeds (300 calories each) through my peg daily. 
it’s all quite daunting but feel free to message me as I’ve had my peg fitted 20/1 and started treatment 27/1 so it’s all happening still. 

Hi

how are you doing

i start 6 th march

had peg yesterday very sore 

Any good tips???

Hi

Having a peg is hard going - I found sleeping painful / had to get comfy and my peg was too tight which made it worse. I ended up on antibiotics as I developed an infection at the site. 

advice? Keep it clean, go to your doctors if you suspect infection (tube nurse any prescribe anything) tell someone if you are worried about symptoms or pain. 
Oramorph made me bunged up.

A month later I’m used to having it - using it daily for feeds and it easy to do. 

feeding wise I‘m on day 24 and still eating weetabix for breakfast, 3 feeds and has a pasta meal yesterday too! 

BTW I don’t have notifications on so no point in ‘chasing’ messages. I’ll get how to turn notifications for when I’m tagged