Even 'tho it seems too late for a CCC to be as useful as it could have been (the teeth are gone for instance) and our function here is not to be Monday Morning Quarterback, having a second opinion from a CCC will keep the current providers on their toes.

One problem is that altho' a CCC seems the better way to go, we all seem to be rushed by that decision point too fast to have recognized it as one. That was certainly true in my case.

Sounds to me like you parents are in denial (and I'd guess that your father is usually the decision-maker and stronger personality) and keeping you and your sister out of the loop likely seems to them as a way to avoid more problems -- Unfortunately, as you know, it's really only going to create more of them. Having you both in on everything from the start means that you are going to be able to provide support to your mother.

There's a lot of work ahead for all of you to get this behind you and the quicker you get organized, the better. I have been watching several families go thru the Radiation Oncology Center where I am getting treatment and it's clear that they are all in good spirits and working together.

Despite the fact that your father is the one with the cancer (just having all your teeth pulled is major trauma to the body, let alone the rest of these debilitating procedures), a large share of the load will fall on your mother because she's doing the caregiving and keeping things running).

If, in the end, they still want to keep you both in the dark, then just grit your teeth, dump the feelings and get on with helping by doing your "uninformed" best. You're doing all the right things so far to get yourself informed and I believe you will continue to do so.

Pete


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.