Hi I had throat cancer in 2018 and receiving chemo and radio they got did of the cancer. But my throat and neck have never been the same in all of my follow up appointments I've always been told it is always swollen and painful. The combination of this that for the last 9 months things have got progressively worse. Combinating in that on the 23rd of January I was rushed to critical care and intubated as I couldn't breath due to pneumonia in both lungs. I am still in hospital recovering and awiting a test that will xray my swallow as I do it
But the consultant has said that the are 95% sure at this stage I will be peg fed for the remainder of my life! The trouble is no one here will discuss with me about the questions I have which is mainly how do you live and manage with this way of life please can anybody help
Hi Very Confused. Welcome to the community.
What an awful situation to be in. Sadly sometimes we read t so badly to the radiotherapy that we are scarred for life
I'll tag one of our other community champs chris2012 who is permanently PEG fed. I'm sure he'll pop on this evening with some help for you.
Don't despair...it takes a heck of a lot of getting used to but Chris manages very well
Best wishes
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Good evening very confused and lost, sorry to hear about your recent advents, i have had a few video x-rays (video fluoroscopy) which will indicate how efficient you swallowing is with certain foods. Unfortunately for me due to previous surgeries my swallow was not very good when it came to solid foods or thick liquids, i can manage Ensures at a push but can be very messy so its more convinient and easier to use my PEG. I can drink thinner liquids like tea, coffee, water etc plus some cup a soups as i dilute them to suit. I have 7 ensure compact a day through my PEG and on the whole i have no issues with PEG feeding using a syringe although some people are pump fed. It is difficult to begin with as its a complete change from having normal meals but because i have been PEG dependent since 2009 im used to it and have my little routine and looking after / using the PEG is quite straight forward. The PEG is changed every 4 to 6 months if you have the balloon type fitted ,which is the most common type, you will be shown how to change the water in the balloon which i change every 3 weeks and li takes about a minute to do. Some people ask how i cope not eating normal food but its just a case of adapting to your new way of feeding , i tend not to be with others when they are eating as i found that was the best way for me to cope and have stuck to it. Please feel free to read my profile by clicking on my name as it will give you a brief outline of my encounters, you are welcome to re-post and ask any questions as i will only to pleased to offer my advice or help. Wishing you well for continued recovery andyour swallow test. Take care.
Chris
Its sometimes not easy but its worth it !
I still dont understand why people still use the balloon peg
They use it because it's the one they're given.
Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.
