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DiscussionLooking for help with radiation fibrosis; Tips?
Head & Neck Cancer | Last Active: Aug 6 1:23pm | Replies (13)Comment receiving replies
Replies to "@josk, Princess Margaret Cancer Center/UHN in Toronto has a fabulous Palliative Care center and team. You..."
Hi Colleen
Many thanks for your input.
I believe I am one of the fortunate ones who has a great and supportive medical team at UHN. I have not checked out or looked into the Palliative Care yet - but after my 'panic' with onset of dysarthria - which occurred during the COVID - my oncologist referred me to the Head and Neck Survivorship Program - and believe this is where I will seek palliative care when the need arise.
And yes - I have tried a couple of speech language specialists for swallowing and speaking - but after the initial sessions - I find that they do not really meet my expectations. I currently do my best at exercises to the head and neck areas - hoping to maintain current situation and keep it from deteriorating (I had made known to my oncologist that I will never get a feeding tube in me when I get to the point where I cannot swallow!!)
Hearing impairment - was advised that nothing can be done - except for hearing aids (hearing on the left ear is at '0' - this is where radiation is more concentrated.
Since my speech and swallowing occurred in mid 2020 - and going through the 'panic' stage - I am now adapting to accept my current situation - and trying to be 'ok' on my own - and yes, I find that withdrawing and being on my own is less frustrating. (It is difficult to have people be aware and be understandable of my 'invisible disabilities' - not sure if this is the right choice!!)
Again - thanks for your input.