Hi I was diagnosed with a radiation induced sarcoma to the junction of the hard and soft palate in the summer of 2025. This was my third mouth cancer and I had the tumour removed via a maxillectomy in October with the insertion of a skin flap from my thigh. Unfortunately this failed while in hospital and I underwent a 2nd 12 hour operation to replace this with a flap and artery from my forearm. I was discharged after 3 weeks including a 10 day ICU stay.
Some 7 months later I am still using my PEG as I can no longer swallow to eat or drink despite exercises using EMST. In addition I have trismus which hasn't improved much with the use of a therabite.
I've taken the decision to stop trying to eat or drink for the moment at least as even if my swallow did improve I would not be able to get much into my mouth because of the poor mouth opening.
My speech thankfully has improved although using the phone is extremely difficult and stressful as people at the other end cannot understand me. Thankfully I found a speech assistant app to help with this and try to use online chat as much as possible when dealing with companies.
I am still finding though that I get tired easily. Dog walks tend to be shorter and gardening is now in a series of short bouts.
Overseas holidays are now out due to the amount of liquid food I would have to take with me. I've bought a motorhome so that I can still get away but take sufficient quantities of food with me and I'm loving that.
Mentally I'm OK but I was wondering whether anybody else had been through similar surgery and whether they had experienced a similar recovery and side effects.
