Karen,
Thank you - for everything.
I have not worked closely AT ALL with the rad onc, unlike with my medical/regular onc., who "gets" me and takes his time to explain things & listens to me. Only once, earlier this year, was I VERY annoyed with him as I felt I was being rushed. That is the exception to the rule, in my many interactions & appointments with him. AND I know he is often 'triple-booked,' as I've heard the desk staff say this more than once. Not trying to make excuses, but I get it. And any confusion/communication errors I had experienced previously were addressed and clarified during our next appointment. I will also consult with him, and/or the neurosurgeon, about Decadron.
I can relate to your family's various reactions. Sadly, neither of my parents are still living (Dad - struck by intoxicated driver a week after my 7th birthday; Mom - passed in 2004 @ 72 years old - health issue). My oldest (and most comforting sister), lives way up in NJ (I'm in S. Louisiana), and my other sis lives an hour away, but reacts similar to the way to you described your brother's reaction. When I was going thru chemo last year, I'd text her now & then with updates, which went unanswered. That hurt. If I'd text her about silly, superficial stuff & I'd get a response almost right away. When shit gets real, she shuts down. I came to accept that as her coping mechanism & I stopped trying to pull her in, understanding that she couldn't deal. I know I need extend this same courtesy to my husband. It's just harder when we live in the same house . . . AND because he's my husband. And best friend.
I WILL check into palliative care, especially therapy/counselling. My cancer center has an integrative & wellness program, and I know that counselling is a service they offer. I realize that I'm often expecting my husband to fill a role that he can't, at least not on a constant basis. We have been married for 16 years, but have known each other for 21, as we were friends for years before we dated. Shortly after meeting him, I remember thinking I felt a connection, like he was my 'soulmate.' The thought of leaving him behind breaks my heart . . .and I know he feels the same. I try not to let my mind go there, but some days, especially when you're not feeling well, it's hard not to. We're only human.
Well, tomorrow is another day. I'm hoping, as I do every night, that I'll feel even a teeny, tiny bit better tomorrow than I did today.
42 yr. old female
Rectal cancer Stage 3C T3 N1 M0 - Sept 2015
28 rounds radiation w/Xeloda - Nov - Dec 2015
2/17/16 - Surgery to remove rectal tumor, lymph nodes (2/20+), ovaries & fallopian tubes, temp. ileostomy
3/28/16 - 9/26/16 -12 rounds FOLFOX w/full oxi
Ileo reversal 10/27/16; Port removed 12/1/16
Lung mets confirmed 2/6/17
March-May 2017 - brain mets; brain rad. 5/9-5/29/17