Although I’m happy to be alive 17 years after my initial diagnosis of oral cancer, I have experienced a host of long term side effects from treatment. Throughout these years I’ve been able to “get over” many insecurities and have learnt to cope with the others. What I’m finding most embarrassing —I cannot speak without spewing saliva everywhere. I experienced this problem prior to having all my teeth extracted however it’s severity has greatly increased since then. People move away from me when I am trying to engage in conversation, even my doctors. I can clean my tablet and phone screens, yet after a very short time using the phone on speaker, I can see a filthy, spot covered screen; and even my tablet. I don’t usually speak at my tablet, so I’m figuring the spray comes out even when just exhaling. Has anyone else experienced this, and if so please tell me how you handle this. Thanks.
Hi Stephen, its been a long time since I have been on line here, but yes I have the same thing and I have only been out of radiation for the past 12 years, I am kind of happy that I always wear a mask now due to spitting and chipping teeth. I usually just carry a napkin or cloth one, not sure but I can ask the oncologist that I am seeing on Monday take care, Michele
Thanks so much for sharing your struggles. At least I know I’m not crazy. What I’ve experienced is lots of loving friends and family who will simply dismiss my concerns, and say things like, “No, you don’t spit when you speak.”, etc, but I know they’re just trying to spare my feelings. I wish people could just tell me the truth. I totally understand the chipping teeth issue, I went through it and ended up having them all removed. For me now, it’s been 11 years since, and 17 years since cancer diagnosis. Funny that you should say wearing a mask gave you some sort of comfort; I felt the same.
My husband is almost 14 years out from diagnosis and treatment. He has difficulty with drooling---late effects of radiation and surgeries. He has been working with a speech pathologist who has given him exercises to help improve his swallowing. We're hoping this will also help him control the flow of saliva. The SP said that within the last 5 to 6 years, there has been more emphasis on working with H&N cancer patients right after treatment. The only time we saw a SP was after my husband had his trach removed, kind of a "one and done".
Maybe a SP can help you, too. We're hopeful that he can get some relief, however it has been a long time since diagnosis. We'll have to see how this plays out. Best of luck to you!
Hi Steve, yes I get it. ..........I drool , especially when I sleep. Wet around me when I gee up. Also, when I fly and take a nap, It looks pretty bad! But so what, as you said...happy to be alive. My personal experience when I spit of blow food out is that most folks appreciate that I am still trying to live As the saying goes...the new normal
Good luck, Steve