Frustration!

[MDemisay]

Everybody,

Just when I can get some peace with the relatively new news that Irv has once more become a factor in my life, the people in my life, are starting to get nervous that I am not moving fast enough!

I am getting nervous as I deal with these people. It would be helpful if I could send out a general message that I felt fine, that everything is progressing as planned.


I do not want to send a message out on Facebook as that is only helpful to the people that I am on with not to the 70 and over crowd generally.

I guess it doesn't help much when the Patient Advocate that you've selected doesn't get back to you!

I suppose at this point, I have to pray and meditate on it a little longer!


I am interested at what you think?

Mike

[lrobie]

I am constantly being asked by my husband, and the co-workers that know, if I've made a decision.  The co-workers also pushed me to go for my 2nd and 3rd opinons.  I try to focus on something else and then someone has to remind me.  I have to close my office door every now and then because I feel like I might lose it.  That's my frustrtion.  I guess I have it both ways though.  Some people don't acknowledge it and some over-acknowledge...

Lisa

[MDemisay]

Lisa,

While everybody's story is different for different reasons, I feel that your story mirrors mine in a way. My wife has been patient with this for about 4 weeks now. Waiting for me to do the research as she is exhausted from the first go around I had with this accursed AN thing back in 2004.

She has asked me to get a Patient Advocate this time to help coordinate the voluminous research that has to be done in order to explore the options of surgery and radiation (both Gamma and Cyber) with different neurosurgeon-oncologists teams.

I admit that this process has been slow. Considering that I have been through so much I was finally able to relax and not obsess over it (as I had been losing sleep for nearly 3 weeks. Since I lost faith in my original plan of Gamma Knife surgery.

Excuse me, if I didn't feel comfortable with the amount of times the procedure had been done on others with the same scanning type (CT) . I am not able to undergo an MRI as I have metallic clips in my brain from an ancient surgery.

Hope you are coping giving yourself lots of down time where you are not forced to think of it much.

Thank you for letting me vent, and for "hearing" me!

Mike

[MDemisay]

It gets better people!

I made an appointment to discuss by phone the treatment options and the docs that have been recommended here so I am not as frustrated that things are not moving forward as they should be . I am also praying more and meditating more. Thanks for your support!

Have a nice March weekend!

Mike
.

[MDemisay]

Friends,

I really cannot believe I'm using this post again! But I at this point am frustrated again. Not because of anything the Docs have or haven't done but because of the collateral damage this process is causing to my marriage. Because of my reluctance for another procedure, my wife thinks I need a better cognitive therapist a better behavioral therapist. Can't I stay at home once in a while? Waiting for an answer from Dr. Kondziolka?

Is there a support group out there for of us struggling with depression and self doubt? As I wait for an answer, would it be alright to ask for prayers?

Sorry to bump this up again!

Mike

I don't know where else to turn!

[alabamajane]

Mike, you can always turn 'here'... and yes,, I do believe it is OK to ask for prayers, from those of us who pray,,and "generous" good thoughts from others on here...

I have not had to deal with the re-growth aspect of the AN,, that would seem to be very stressful in itself,, but thinking of another procedure and doing all the research again would definitely be overwhelming.

I say,,, take your time (if of course the medical professionals agree with that) and let the "others" know that you are doing just that,, taking your time to research and come to the realization that something else will probably have to be done.. this AN ordeal is very hard emotionally on US but also those that care about our well-being.. so vent here and try to be patient with the others and their concerns for you... it sounds as if you are being pro-active in searching for more opinions and advice,, step back from the frustrations and try to wait for some more answers/options from the Drs. you have contacted.. good luck,, we are here for you.. Jane

[MDemisay]

Dear Jane,

Thanks so much for your support and prayers!

It hurts especially much when your lifemate (wife) begins to lose faith!

Thanks!

Mike