Great idea Brian!
One of the issues that Alex and I face is that we have been "cut loose" from the health system 3 years out from treatment, so that when we go for the obligatory 6 month check up the specialists are only interested in examining Alex for recurrence and have no interest in hearing about the issues that need addressing. To add insult to injury, the RO infers that Alex should be thanking his lucky stars that he is alive and that these issues are inconsequential compared with what could have happened. The RO also shuts Alex down by inferring that his issues are unusual or unrelated which makes him feel like a whinger or a hypochondriac.
Consequently, Alex has just stopped mentioning it which of course is exactly what the RO intended and does not help Alex's situation.
Alex is still horribly underweight, still unable to eat solid food in any meaningful way, remaining teeth have now all fallen out or broken off, fatigue is still an issue, he oscillates between "foam" and "desert" in terms of saliva, and has intermittent pain from peripheral neuropathy.
The problem seems to be that no one will take on these adverse events and try and solve the issues. The oncology guys (ENT, RO and MO) think their job is done and the general physician and regular dentist don't feel they are qualified to deal with it. Access to speech pathologist, dietician and oral surgeon is severely limited and we are in line behind the people currently undergoing treatment who are in more desperate need. Whilst we understand this, it is very frustrating and I notice Alex doesn't even try to talk to them anymore (we see them on "group hug" day every 6 months). Not a good way to address the issues.
At least an opportunity to discuss issues here will give us an opportunity to explore possible solutions whilst not feeling like freaks or complainers.
Having said all that, I don't think we can input much to your issues Brian but would love to hear how you and others manage your issues so that in the future, we at least have a starting point that isn't behind the 8 ball to begin with.
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED