Videofluroscopy

Oh I am so sorry to hear your news. I’ll tag one of our other community champs who is PEG fed. 
chris2012 

There’s nothing that will put out the fire of your acute grief but perhaps he can help you come to terms with what’s to come. I’ll hunt around for any other resources I can find for you. Where are you being treated? 

Hi Oh dear am so sorry to hear a sure @Chris2012 will pop on later. He has been peg reliant over 10 years he leads a full life .Please keep in touch we are all here for you. Hugs Hazel xx

Beesuit said:

Where are you being treated?

 Alfienangel  

I’ve found it. Sussex. 
Can I add. Don’t give up just yet. There are still opinions to be had. 

Good evening Alfieangel, i know how you are feeling right now but it sounds as if its not 100% you will not be able to eat again so try not to look negative side just yet and hold onto that bit of hope. Unfortunately due to previous operations and radiotherapy, my swallow functions did not recover so i now rely on being PEG fed using a syringe rather than a pump. I did recover enough to be able to swallow thin liquids and can manage the basic "cup s soups " with no bits in it so i take this as a bonus. I know they cannot do anything for me but i have had a lot of reconstructive surgery, radio, and chemo so hopefully, they can improve your swallowing as treatment and techniques have improved since 2010 when i had my last operation. I lead a very good quality of life it just took a bit of time to accept and adapt, i know it can be hard to accept the changes but there are so many positives to look forward to like holidays the birth of my first grandchild ( 8 weeks old ),i used to walk my dogs and go shopping etc. I cannot say if your consultants can do anything but if they are as good as mine they will do their very best to give you the best quality of life they can. You could chat with someone about having a few sessions with a Macmillian-trained counselor as i did. I have never regretted the choice i and my team made and owe a lot to the skills of the N.H.S for giving me these extra years and witnessing some great events. I think once you know the full outcome you will be in a better place and should be given great advice from the specialists. Sorry i cannot give more positive advice but i wish you all the best , take care. 

                                                                                                Chris x

Thank you all. I'm praying that something can be done.  I am at Eastbourne District Hospital for ENT and The Brighton Cancer Centre for Oncology.   I'm so devastated I just can't think straight right now.  I need to see ENT and see what they can do. Mr Violaris, Consultant is a great man and I have confidence in him.    X

I’ve asked Emma Hallam if there is a dedicated late effects unit anywhere near you and she’s put some feelers out. Hugs 

Never heard of A Late Effects Unit!  What does it do?  This is why this service is invaluable. I hear and learn about things I've never come across!!!  I've been thinking over the weekend.  My gut feeling is the SALT lady may have got this a little out of perspective.  I can swallow things, its not easy or comfortable but I did only finish treatment at the start of October so I'm told its still early days?    The tumour was smack bang  in my throat next to the larynx (the Piroforum fossa), that area took the biggest hit.  Its better than it was so maybe it won't be as bad as she thinks it might be?  Or am I ever the optimist?  Its very much Hope vs being naive!!!!

X

Alfienangel said:

Never heard of A Late Effects Unit!

Think of a lymphedema clinic and expand it to all the problems encountered after RT. Every university hospital should have one but they don't. Emma's is at Nottingham. It's a collection of clinicians that get together to help and advise people through the problems they get with radiotherapy....not just head and neck but Emma's particular interest is there. I haven't heard back from her yet I'm afraid but maybe you could ask your hospital?

I think maybe you might be right in your own evaluation. You're only just about 14 weeks? I was still on pain killers around then. Don't give up hope

Hi it is still  early days. Keep up  the swallow exercises don’t over do the eating. If u found something I was comfortable with I stuck ti that fir a few days. Even noe 5 years on sone things irritate so  i leave well alone   Have you access ti s cancer nurse give her a call make sn appointment ti see consultant your mind needs putting at east. Hugs Hazel xx. c

Hey Alfienanagel - catching up with posts. I am now 100% RIG feeding as a result of a slow/steady decline in my ability to swallow coupled with one hit of hypothermia then two bouts of pneumonia that eventually identified that I was aspirating nearly 50% of everything I was swallowing.

It is a bit/sweet situation but having had 6 months to recover from pneumonia I do not want that again and the risks of lung damage over a period of time is a risk. I understand that there are few options that avoid major surgery and one particular option is to have a tracheotomy to breath to allow you to eat but that means losing ‘normal’ speech and potentially creating additional issues with infection etc with that.

A RIG/PEG means that you can lead an almost normal life but rely on liquid food and water delivered using a syringe or machine. I have a tiny machine in a rucksack that feeds my whilst I go about life. I have eaten or drink anything since the 31/07/2022 and it is difficult but my attitude to eating is now robotic like filling up a car with fuel. I am having Commitment and Acceptance CBT to try and help me to come to terms with this as I am only 51 and want to continue with life despite these drawbacks. As a lover of food and socialising this predicament is very s*** however, I am alive to tell the tale and sometimes it’s about perspective.