I’m meeting with Oral Surg. and Pre-Anes. (whatever that means) today who I think will be the one doing a possible Reconstructive Surg. and to discuss result from head/neck CT scan, to discuss what “The Plan” will be moving forward now. Any suggestions what are important questions to ask- I’m going alone (have no one to accompany me to this appt.- wish I had someone that’s gone through this already or at least in the medical field) and feel like it’s just going to be so overwhelming and I’m just going to shut down, forget what to ask, etc. The appts. already seem rushed and it’s so important that I ask the right questions and make the right decisions at this juncture moving forward, so I need to streamline this as much as possible at this appt.moving forward.

LauraC,

I am so sorry you are going through this. Cancer is scary and overwhelming at times.

I went through stage 4 SCC surgery and treatment two+ years ago. Lost right half of my tongue, Doc rebuilt it with flesh and artery from my left forearm, trach tube for breathing, nasal tube for feeding, took all my nodes on the associated side of my neck. Received radiation to mouth and neck, no chemo as they found cancer inside only one node.

The best advice i got was to keep a journal. Take it with you to the appointments. Write all the important things down. Questions would pop into my mind at all hours. I had my journal there next to me nearly all the time. I would write it down no matter how silly it sounded. Before every appointment, esp. daily rounds when i was in the hospital, etc. I would list all my questions since the last dr visit. Speaking was hard after surgery, so sometimes i would just show them my list of questions.

Many other things that can help - what to eat, recipes for Vitamix, how to best tolerate treatment (simple answer - keep your weight up), what to bring to hospital, etc. But, most of these will be easier to answer once you know the plan.

One other thing. You are in charge. The doctors typically present this very frank and definite treatment plan. You have every right to question it and decide what you want to know and what you want to do. This is your body, your life, and you should never feel like you can't ask anything at anytime. So, if you forget, and think of something later, get emails and contacts of the nurses and case helpers so you can reach out later.

A short quick read i recommend. Google "cancer is like finding a lion in the fridge." It made me laugh and cry and i have reread it many times.

Reach back out after your meeting and people here will help.

Keep the faith,
Nels

Hey Laura,

How are you doing?