Hi A long time since I was on the forums here. This might be a long post !
I was first diagnosed with HPV related cancer at the base of my tongue in 2018 and given the all clear in 2019 after chemo and radiotherapy. In 2023 a small ulcer onto side of my tongue turned out to be cancerous and was removed by surgery. This was apparently unrelated to the 1st and likely to be alcohol and smoking related - I gave up smoking 23 years earlier and considered myself a moderate drinker.
In August this year I found a lump on the roof of my mouth which consultants advised was a different type again possibly a rare reaction to radiotherapy 7 years earlier. Major surgery took place in October to remove the tumour and the palate and replace with a flap of skin. This first flap failed within a week and I had a second flap inserted from my arm. I was in ICU for about 10 days in total with a tracheostomy tube which was removed prior to to transferring to a ward. I was discharged about 18 days after the first operation with a PEG in place.
It's now some 6 weeks after discharge and I am bolus feeding 5 times a day with Fortisip 200ml. I was offered feeding via a pump but I rejected this as I had used this method in 2018 and found it very restrictive particularly overnight. Having said that feeding every 2.5 hours even for just 10 minutes is a bit disruptive as well. Swallowing is an ongoing issue and I am not feeling confident that I will be able to stop using the PEG and revert to normal eating and drinking. Consultants say throat has gone through a lot with radiotherapy and now this.
I developed trismus after discharge and can hardly open my mouth. I am working with Speech Therapy but there is very little improvement. I've just had a TheraBite delivered and if I can open my mouth sufficiently will be starting to use that to stretch my jaw.
Oh and almost forgot that my voice has changed substantially and is very nasal. I struggle to speak clearly although this has improved a little Speech Therapists advise this is unlikely to improve.
Not looking for sympathy but advice from any others who have experience similar surgery and post-treatment symptoms:
How often did you feed using bolus ?
Did you get back to eating/drinking normally?
Did your jaw/mouth opening improve ?
