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What’s left after my cure for nasopharyngeal cancer
Head & Neck Cancer | Last Active: 4 days ago | Replies (21)Comment receiving replies
Hi Lilyann
I was diagnosed with T4 N1 nasopharyngeal cancer in 2006, and have to say I had a great medical team at PMCC in Toronto. After treatment, and with feeding tube removed - I thought I was 'ok' and after 15 years of follow up with my oncologist, I was officially discharged - in that I no longer require follow-up. But, in summer of 2020 I started not being able to speak in that my words were slurred. I panicked and not know who to turn to - eventually I seek out my my oncologist - after several tests and visits with various depts in PMCC I was then diagnosed with dysarthria and dysphagia and severe neck fibrosis - late effects of radiation -- after almost 15 years !!!
This is an added medical issue for me (a big one !!) - i.e. besides severe hearing loss, food swallowing, teeth & gum issues, taste issues, etc, etc.
I have come to the conclusion that I have to accept and adapt my lifestyle to my current situation - a complete U Turn to what I was prior to my speech issues. To keep my speech issues from getting worse to the point where I am just not able to form a single world - I do dysphagia exercises daily - not sure if this helps .... but .....!!
I hear you .. and all the best in this difficult journey.
Replies to "Hi Lilyann I was diagnosed with T4 N1 nasopharyngeal cancer in 2006, and have to say..."
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hi josk, lilyann here. my goodness, thank you for telling us about your journey. i am so glad that you took the time to tell us as its hard because of all you went through. thing is; no one tells you this when you start your journey. you find out things down the road. you are going through a lot more than me and the time span is something else (really lack of words) you have put everything in perspective so well. i agree with the panic, when i was told i have to do this and that and then we will start this and that and next thing you know my brain couldn't handle it and i am not too sure i was close to a breakdown. so it sounds again like you are a lot stronger than me. i sure hate it for you and that comes from the heart. i do have the hearing loss, trouble swallowing and liquids are the worst. neck and ear pain, goes up the back of my head. have to lay down. yes, we come to a point of "acceptance" it is our new normal. so now i got something "new" that happened to me today.........i have a 4 unit bridge .......front teeth........thank god for masks. they fell out..........oh boy, omg! so of course we lucked out and a dentist seen me and put it back in.......however......i have to be very careful as 2 of the 3 teeth holding the bridge are broke. do you know my husband told him about my cancer and do you know he wanted to know more and he even felt how my lymph nodes were getting larger because he wanted to know why i had to have radiation. he also said too.....about the 3 teeth pulled on the bottom of my mouth. said i need more time in healing because of some Cartledge growing out of one of the pulled teeth. when i told him they wanted to radiate one week after dental surgery. he said that would have been too early and that was sept. 11, 2024. they wanted to radiate me on the 18th. pet scan was on the 17th. so mentally, it was just too much for me. i do some of the dysphagia exercises, i never did get to go to speech therapy. at the time i thought "why" i have no voice. silly me. anyway. i thank you for the best wishes and so glad to hear from you. it helps me a lot to be able to correspond with someone. its always good to tell your story and hear others as we are not a lone that is for sure. so you will be in my prayers and i hope you have met some compassionate people along the way as i have. no one really understands how hard it is not to be able to talk. its hard to explain things. sorry to be this long but, what a day. take care.