Hello @eileen61 I'm sorry to read of your diagnosis. I'm Scott and my wife fought her brain cancer for over 14 years with me as her caregiver. My wife had the same diagnosis and the times of 'waiting' were often worse than those when we were actively able to act and react. Those in-between times were always brutal.

I fully know every tumor is different and every patient is unique, so all I can offer (especially since I am not any kind of medical professional) are our experiences.

My wife always had me take notes of the conversations she had with her neuro-oncology doctors (at Mayo Rochester) so we didn't miss things as she was thinking about her next question or as the details and unknown terms began flowing. We also immediately signed HIPPA forms so the doctors had her approval to speak directly with our adult children so they could get the information straight from the source. This helped us immensely as I was not having to always be the information hub and they got exactly the same info we did, so they knew it was being sugar coated, items ignored, etc. by Mom or Dad. We also took care of all our advance directives, POA, estate plans, wills, etc. We saw this as the first block in what we viewed as the foundation of a fortress we would build for her from which she could fight her war.

Again, in my wife's case, she made the immediate decision her treatment goal was always going to be to achieve the best quality of life over quantity of life. This was the most important foundational piece for her. She never waivered from this goal.

Her most significant early questions were treatment options. She asked what every option was that the doctors could think of as treatment alternatives. We wanted to know them all. She also made sure to ask the potential adverse outcomes -- even if in the tiniest percentages of possibilities. We also made two early agreements between ourselves that formed two more of our foundation blocks: First was that we would use the doctors as the experts they were and rely on their knowledge and experience and therefore give their advice the weight it deserved. Second was that we would use each other as deciding counsel as we made treatment decisions. Once more people learned of my wife's diagnosis more and more of them felt 'obligated' to offer their advice on what they believed we should be doing when it came to her treatment decisions. Often, this really didn't help.

She also asked a lot of questions about how the Mayo doctors would interface with her GP in the future since we lived many states away.

She also asked detailed questions regarding each med she was prescribed. An early purchase was a drug dictionary to have on hand.

My wife said something very sage to me in the first week of her illness. At the time I did not fully recognize its value, however I did as time went on. She said "Scott, I'm the one fighting this war. It is MY war. I will fight it how I want, as I want, with the weapons I want, and in the manner I want. I need you to agree with this. Do you?" This became another of our critical foundational blocks upon which we built her fight. She did it HER way! This helped me be able to stand aside and let her have her emotions as SHE felt them at the time.

My acceptance of the fact she was the one fighting made it far easier for me to understand and adhere to each of her decisions. I would joke with her that she was the army and I was just her quartermaster making sure she had what she needed and wanted. I provided support and for the longest time I was not the decision maker. Once that changed then I was lucky to have her words to guide me along, knowing it was as she wished.

I am sorry this went on and one....I'm sure I missed some of your important questions and concerns. What other questions do you have?

I wish you stength, courage, and peace at this most challenging time.