I found a lump on my neck in December and was diagnosed with Squamous Cell Carcinoma (Base of Tongue) In January 2020 after alot of scans and tests to find the primary site.
7 months, PEG, teeth removal,3 hospital admissions and a horrendous recovery down the line, I am alot stronger but still a way to go.
My biggest challenge right now is eating. I'm still really struggling with dry mouth, taste changes and the feeling of food in my mouth. I get quite anxious about it and therefore eat very little, relying on liquid food for nourishment. I'm desperate to get rid of my tube.
Sarah
So am I for the last five years but no luck. May I ask your reason. Mine is because I feed by night about six hours and therefore cant sleep properly making me tired by day. I was given sleeping tablets but I would rather not take them. They are habit forming.
Whatever I eat just doesnt put my weight up so I am stuck with it. I think unless you start eating you will never get rid of it. I know all about 'taste' changes and you just have to try different foods. I also had all my teeth out which makes it impossible to chew food. I am not sure it was really necessary and I should have gone to a dentist to make sure.
Hi Sarah
I did not have a PEG but from other posts I have read it seems it can take a while to get back to eating and some take longer than others. Have you discussed this with your dietician?
My operation was different to yours and as a result I am only able to eat pureed food and that is the way I will be for the rest of my life. I also have difficulty with texture, dry mouth and changed taste. I have tried lots of different foods over the last 18 months and have now worked out the type of food that is just right for me. The right texture, the right amount of moisture, the right taste. It did take a while and trying out lots of different foods before I got to that stage. I am maintaining my weight with a top up of Fortisips and now enjoy what I can manage and you will too given a bit of time.
Persevere and keep trying small amounts of different foods and you will find the ones that are just right for you.
Best wishes for your ongoing recovery.
Lyn
Sophie66
Hi Sarah
Welcome to the forum
Sorry you have had a horrendous time, but glad you now feel stronger and are reaching out for tips on eating to help you move things forward. I can understand you feel anxious. You say you can swallow okay, this is good. I have no experience with dry mouth and problems with texture with foods but what I have experience is of taking things at tiny little steps to move things along.As you can eat a few spoons of yogurt, build on this. Obviously you must take guide from your speech and language therapist. Maybe you can eat more yogurt and be encouraged by this. Lyn has posted on how she how eats pureed foods, Seeker 1 also with Lyn tried different foods.
Keep going Sarah, it can take time to see improvements but you can get there
The very best for your ongoing recovery
Nicky
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2025 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007