← Return to What’s left after my cure for nasopharyngeal cancer

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@lilyann

dear 7881188, lilyann here. so sorry to hear about your husband and can fully understand your devastation for all of you. so glad that he can get the fluid removed in order to breathe better, that is a lot of fluid. the showing of cancer cells however is not something none of you expected after going through all that radiation i'm sure. yes, i believe that is how my oncologist put it that i am on palliative care. living your best life sounds appropriate, however, when you are in such pain its hard to think about the things you would like to do. i just hate the fact of taking any pills. know that you all will be in my prayers as i feel a lot of sadness for all of you and i'm guessing your husband is not up in age as i am. just the thought, the word, the big "C" as they use to call it is mind-blowing enough. it is so hard to think about anything else. could you please keep in touch and let me know how the pet scan turns out. my sister tells me to fight lily, fight. she is an r.n. and works in a top hospital in philly, however, she is a neuro nurse, use to be in cardio-thoracic. so she is not familiar with thyroid cancers as she says. she just turned 71 and plans on retiring in 2025 . so know that my heart is hurting for all of you.

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Replies to "dear 7881188, lilyann here. so sorry to hear about your husband and can fully understand your..."

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.