Total maxillectomy

Thank you x

Hi, after my first maxillectomy I was left with a largish hole in roof of mouth , no skin flap as it was in the pandemic and only short ops were happening. My obturator wasn’t a very good fit and rubbed sores etc so I made the decision to do without whilst they were making a new one. ( this took a long time as I had to start radiotherapy and my mouth wasn’t in a fit state)

I found by tilting my head back I could pour a small amount of liquid into front of mouth under tongue then roll it backwards. At that stage it was from a small bottle. It was much later that my sister found medical drinking cups with a long spout.
Now after my second op (had all the hard palate removed) so a big hole. The drinking cups are brilliant and I can pour the liquid down my throat like a man necking a pint of beer! I drink home blended soups , smoothies, fortisips etc this way. I do have an old obturator which is a bit loose and now a new one which is very painful so don’t wear them a lot.

You don’t say if you’ve had a flap and whether you still have any teeth? 
Do you have a peg in your stomach for feeding during radiotherapy? 

I know initially the obturator is very uncomfortable and huge but it’s amazing how one adapts over time. It is also difficult to wear if radiotherapy on the mouth. Don’t give up the human body is amazing the way it learns to adapt. I know it takes a long time but try to persist- it’s worth it in the end. Positivity all the way. 

Any questions you have I will try to answer. 
Good luck

Elaine

Hi Paula. I would just like to put a caveat in here. Remember both Elaine and I have had bilateral maxillectomies so have limited teeth which help a lot with chewing. I have only teeth left on my left lower jaw. The more teeth you have left the better for chewing. Both Elaine and I have been on the cancer journey for a few years now so have  had time to adapt to our changed circumstances. Everyone's circumstances are different and ours may not reflect everyone else who  have had maxillectomies.

I don't want you to feel demoralised. Take one day at a time and manage the day and don't project into tomorrow. It takes care of itself. You will manage the challenges day by day and you will get there.

This time next year you will be well advanced and feeling much more positive. Time really makes a difference.

It is now 10 years since my first op for jaw cancer and I am living a great life and you will too.

Lyn