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View Full Version : Is it just me???


JoJo
07-17-2004, 11:43 AM
Hello ladies,

As you may know, I have a new recurrence to the brain (one tumor at 7mm), and I am supposed to have gamma knife as soon as I come back from vacation (tentatively 1st week of Aug).

Generally, I am pretty laid-back and easy-going, so I have been quite accepting of my cancer. People have told me that I have a pretty strong will. Of course, I still get the occasional bad days.

Anyway, I was just surprised at my reaction on Thurs, after meeting with my onc for the 1st time after having had received my recurrence diagnosis. (My nurse was the one who initially relayed my scan results, cuz the onc was on vacation.)

I immediately felt angry & let-down, as I stepped out of her office. I have never been this upset before (except for the original diagnosis, which I kinda feel had happened so long ago). For the 1st time, I was under the impression that my onc seemed to be NOT very optimistic about my cancer, and not quite supportive in our meeting. She usually does not tell me such revealing input (i.e. prognosis, predicted treatment response). So that day, I would guess that she was probably weary & tired from a busy workday, because she just blurted out to me -- and it was NOT in her usual fashion: "Gamma knife would be a good place to treat your current tumor. Eventually, you are expected to be getting more tumors in the brain. So, it is good that you are going on vacation next week, as we do not know what will be happening next year." That caught my attention, big time! But I did not make any remarks to that.

I am very busy -- maybe too busy -- just telling myself to stop feeling frustrated and just move on. Over the weekend, I have been working SO hard to get this turmoil out of my system so that I could just resume my life! I hate it when I know nothing -- like a dumb, stupid kid -- and people DO know something significant and still NOT let me in -- I mean whenever it comes to me, that is.

Now, I am in the process of trying to rid of my upset emotions and I am sort of like, "Oh, heck with it!! Even IF the onc predicts right, I still want to pursue my small / big goals and just go for it!"

Yesterday, my husband gently reminded me to take it easy and be kind to myself. Sometimes I can be hard on myself. Like I decided to go back to school to volunteer as teacher aide. Truthfully, I became a bit more fatigued, after I began school. My whole family thinks I should quit working altogether, and just rest my body for however long needed. But I do wonder if I am being stubborn and too difficult on myself. Is that why my cancer came back? I guess nobody can really know. I am still attending school. I enjoy work (I am a former self-proclaimed workaholic), and I am not one to sit home and twiddle my thumbs.

So, I keep telling myself to quit being frustrated and just move on. It is like, I am at war with myself. Now, I am tired of having a ongoing talk with myself! Ha :-)

How long am I allowed to feel upset, before making another new chapter in my cancer fight?? Just 24 hours? Or a week? Or 3 months??... Am I pushing myself too far?? Am I speeding up too fast?? You tell me!! Any feedback??? Input appreciated! :-)

Thanks! Hugs

PS: I do not mean to send "false alerts" your way with my onc's comments. Please remember that every cancer case is very individualized.

Lyn
07-17-2004, 05:15 PM
Hi Jo Jo, I recall a similar conversation with my surgeon in 2000, "just go on your holiday, I know this lump is cancer that has come back, you know you have cancer enjoy what time you have." I was with a friend and she took one look at my face, I was balling, we drove home slowly, past a funeral home with a vintage hearse out front, I rang my rellies, they brought flowers up, just like another last supper, then I saw my onc 3 days later, and he calmly said no, your a long timer there is heaps we haven't tried yet, and we are still going, it keeps coming back but we manage to stay one step ahead of it, if your onc is going to be so insensitive look for another, you do not need being around a downer. Most of my teatments have been done as a result of this site and my own research, my onc knows I am not stupid or I would have been dead back in 2000 so he gies me what I WANT. In 1998 I had a Radical mastectomy, 16/16 all positive not hormone responsive and an agressive ugly form of cancer, so they can be wrong about their assumptions.

My prayers are with you, love & hugs Lyn.

Christine
07-18-2004, 03:21 AM
Jo Jo
Why can't you have the Gamma-knife and then go on vacation? It only takes a few hours, and it's over. I wish the Onc had been there for you, 'cause I know how frustrating it is to leave you with this at this time. Isn't there other Onc's who do the same Gamm-Rad at the same facility. How can anyone enjoy a vacation after being told of a recurrent brain tumor. Try your best to be happy and take a 2 week vacation and come back for the Gamma Tx asap...you should be fine.....Hugs

Rozebud
07-18-2004, 04:39 AM
I think you are selling yourself short. Whenever you & I talk, you are always SO positive! I feel like I am the one bringing you down. I'm on "vacation" this week, and it is actually getting me down....thinking there is a good chance my husband and kids will be here someday without me, or with a new mommy/wife (we're on a vacation with 10 other couples & kids). I try not to think about it, but I think it's scary & realistic if those thoughts DON'T creep into our head.

I think your onc was insensitive without meaning to be. I believe you can just "zap" the tumor you have and not have to worry about brain mets again anytime soon. I'm sure I've read many stories about that on this board.

Hang in there Jojo, we're all thinking about you and praying for you ;).

Cathy W
07-18-2004, 06:17 AM
You need to live till you die. And no one knows when that will be but God.
Cathy

lauren
07-18-2004, 06:55 AM
That really sucks that she said that. I wonder if she feels really disappointed and let down too when a patient recurs. I would call her on it - NICELY - and tell her that you DO NOT WANT TO HAVE ANY BRAIN METS AGAIN EVER, and WHAT CAN YOU DO TO PREVENT THAT FROM HAPPENING because you ABSOLUTELY INTEND TO DO EVERYTHING POSSIBLE, and IS SHE ON YOUR TEAM or NOT???

Please Jojo...we need to be supported by positive thinkers. If she is only good when the going is easy (primary cancers), then maybe you need to get another opinion...

lauren

Kitty
07-19-2004, 04:41 AM
Jo-Jo,

No, it is not you and you have every right to be feeling the way you do. Remember work though it and let it go. Maybe your doc really didn't mean what you thought she said. By not challenging her statement at that time, you are now left to speculate on just what she meant. You said yourself this was out of character for her so why not give her the benefit of doubt and enjoy your vacation. When you get back talk to her about what is bothering you - you may find there was a total misunderstanding of what she meant. Anyhow, you did nothing to cause it to return - working will not do that. If that is something you really enjoy doing, then by all means continue to do so. Remember, do not let this control your life and every waking moment - you can't control when & if it decides to come, but you can control how you will let it affect you, your family and your life. Hang in there and have a great vacation (enjoy the life you have here and now).
Kitty