Hi Lam

Alex and I are nearly 18 months out of treatment after undergoing induction chemo and then chemoradiation. Like you, I had a steep learning curve and a patient who "didn't want to know".

Regarding your comment regarding restraint: Alex's standard response to the medics was "tell Karen, she understands these things" which was code for "don't tell me anything that I might not be able to cope with, Karen will filter what I need to know". Just in case, we also produced a note granting permission for the healthcare professionals to disclose information necessary for me to make decisions on his behalf. I don't think they even took a copy - they just accepted the verbal assurance that I was to be told everything and I would pass information on to Alex as he needed it. I struggled with the concept of sharing the information with Alex because he is a grown up and has the right to know his future. However I also didn't want to scare the crap out of him for no good reason. I attended a few appointments on my own in order to have the hard conversations that were too overwhelming for Alex who was busy putting one foot in front of the other.

Regarding your questions re mouth opening and tongue deviation: We didn't realise it at the time, but Alex had trismus and hypoglossal nerve palsy which caused his tongue to veer right at diagnosis. This means it could have only been the cancer or the pain killers. I think it was the cancer and nothing to do with any pain meds. The palsy became more pronounced after radiation but the trismus improved. So I would take a guess based on Alex's situation that yours might be cancer caused as well.

I can't answer your other questions, although you seem to have plenty with the nodal question.

Alex and I are in Sydney and very happy to take this offline if you need to.

Best of luck and keep asking

Karen
PS I too, asked a lot of questions and had some docs get very defensive and at times, personal in attempts to intimidate me into being quiet (silly buggers - like THAT was going to work). My attitude was that we only had one shot to get this right and if my questioning made them uncomfortable, then so be it - I did not have the capacity to be overly concerned with their feelings on top of everything (although I regularly put disclaimers in my emails that what was following might be interpreted as harsh in my attempt to be unambiguous and was not intended that way).