Author Topic: Hello - its good to be back  (Read 3314 times)

tony

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Hello - its good to be back
« on: May 06, 2006, 04:38:36 am »
Hello, its Tony returning from the far side
I am not really a newbie - I used to post 12mths ago....
five (or six) surgeries, a stint with a wheelchair, and one gamma knife
rather got in the way these last 12 mths
Some of the "Golden Oldies" may remember me
- the hospital does....
Best Regards
Tony

Raydean

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Re: Hello - its good to be back
« Reply #1 on: May 06, 2006, 02:47:06 pm »
Welcome back Tony,  It's great to have you back.  If we were anywhere near you we'd give you a big hug!!!!!!!   I'm sorry that things have been so difficult for you.  You're and amazing person to endure so much.  If you feel up to it, would you mind sharing more regarding the events of the past year.

Hig hugs
Raydean and Chet
« Last Edit: May 06, 2006, 08:07:25 pm by Raydean »
Do not go where the path may lead, go instead where there is no path and leave a trail.

tony

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Re: Hello - its good to be back
« Reply #2 on: May 07, 2006, 02:13:47 am »
I am happy to go through it but..
- I really dont want to frighten those who are awaiting surgery
mine is an extreme case - not really true of most outcomes (1% perhaps ?)
what do you suggest we do ?
best regards
tony

Raydean

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Re: Hello - its good to be back
« Reply #3 on: May 07, 2006, 04:53:58 am »
Tony,

You're right, when you're in that small percentile  of outcomes.  (1 to 2 %) and when what can go wrong, does go wrong it's a difficult decision to make.  On one hand there's much that can be learned from  the experience.  But it could also cause  additional fear in those awaiting treatment.  Both of us has felt the responsibility.

 It's a big responsibility.  By sharing the whole story, there's a chance that someone might delay treatment, or chose to do nothing at all.  By sharing, we could be helping  someone else that's having a difficult time know that they aren't alone, that others have found a way thur.

On the list here, most know that Chet has problems related to a 6 cm tumor.  Most have to read between the lines.   Off list I will share the long version once I've determined that the are post treatment and are also experiencing difficulties.  But that's a rare thing.

One thing i won't change is that due to Chet's AN journey and being 1 to 2 % is for others to know that it's critical that the medical team be experienced in the treatment of AN's.   Simply by earning the medical degree that enables them to practice medicine, many doctors are qualified by degree, but not by experience.  Experience counts.  If there's one thing that I want a person to take from our journey is that.  Do whatever it takes to assemble a medical team with experience in the treatment of AN's for whatever treatment option chosen.

I also want others to see that even if all, or most of the bad stuff happens, there is still a valued life to be lived.  Both of our lifes have been changed by this.  Some would say our glass of life is half empty, others would say it's half full.  from our viewpoint, it's life, and I'm grateful for these almost 9 years.  In many ways they are "our bonus years".   

Tony, I can't answer for you, you must do what you think is right.  I remember trying to make the same decision, I even called Lois White (former ANA Director) to ask her opinion.   What I will say, is this.  I am very glad to have you back, you've been missed!!!!!  My e-mail address remains the same  as before   crbledsoe@techline.com      So while you ponder things write me direct.  Hope to hear from you

Hugs
Raydean

(golden oldie, geez  I uhmmmmmm never quite thought of myself in those terms, choke, choke choke, even tho I'm definitely a baby boomer.  <grin>
 
Do not go where the path may lead, go instead where there is no path and leave a trail.

Battyp

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Re: Hello - its good to be back
« Reply #4 on: May 07, 2006, 07:05:25 am »
HI Tony and welcome back.
Being 8 mos post op and with some things I know I've been in the 1 or 2% because my doctor told me  LOL
Would like to hear your story.  One it helps you realize what can go wrong.  I was told oh,you'll be back to work in 3 to 6 weeks (8 mos later I don't know if I'll make it back) two, it show those considering/awaiting or post treatment that no matter how bad things look you can recover from this you just might have to accpet life is different than before.
I know for some it will scare the beejeezus out of them but there will be those that will get comfort too. 
Stepping down from my soap box now.  Glad you're back!!

Captain Deb

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Re: Hello - its good to be back
« Reply #5 on: May 07, 2006, 10:51:47 am »
Yeah Tony--Deborah here--from the old listserve.  I'd be interested in hearing your story. I've had a difficult recovery myself--massive migraine disorder post-op--spent the greater part of 2 1/2 years in bed. I'm lots better now and able to work some.  I work at home--my own hours thank goodness--no way I'd be able to hold a regular job.  Also Captain of the AN Ship--Princess Batty Wench.  Read the Good Morning thread from the beginning for a complete history of that one!
Good to have ya back!
Captain Deb 8)
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Raydean

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Re: Hello - its good to be back
« Reply #6 on: May 07, 2006, 02:05:48 pm »
This post is a little different then our usual posts.   While it is written from the heart, it's also important to share that forum is great.  Everyone has been very understanding of different treatment options and outcomes.  It's a pleasure to be here.  But i can definitely understand why someone that fell in the 1 to 2 % might hesitate to share their complete journey. 


Tony and I belonged to the old email listserve.   Currently we both belong to the ANworld discussion group which is also in email form.  Some from the old list, and newcomers,  a mixed group of treatment options and wait and watch.  Because of this other list I know part of Tony's journey.  I can understand  the choices ahead of him.

I'd also like to share that on the old list serve forum it wasn't  always as nice as it is now on this forum.  The great debate ( between surgery verse radiation) raged on, being revisted often.  At times it was less of a support group, more of a  "my option is best" group .  It was deeply divided and at times hurtful things were said and put downs often stated.

If there were negative outcomes it was debateable how well received the posting would be.
Sometimes the remarks would question if the outcomes  were really real, especially if it didn't fit within the favored treatment option. "didn't matter that we were living proof"  We were made to feel  "less then".   A posting that fell into the 1 to 2 % was considered a "horror story".   That's what we were referred to as, a horror story. Over time the spoken and unspoken message was telling our stories made others uncomfortable, especially those waiting treatment.   Knowing this we shared less of our journey.  While,  we wanted others to see our strength of spirit, courage, the fact that we weren't giving up, or giving in, that life still held value, it hurt to know that all some saw was a "horror story".

I can't speak for Tony, but I know Chet and I became very careful with what we said.  Tony is , as we are, very much aware of the impact his journey might have on a newly diagnosed, or on those waiting treatment.  What's the right amount to share?  I wish I knew the answer.  Personally, it would cause me a great deal of pain to know that by sharing Chet's complicated journey I created doubt, unnecessary fear, or cause someone to delay or change their treatment option .

Just my thoughts
Raydean and Chet




 
« Last Edit: May 07, 2006, 05:39:12 pm by Raydean »
Do not go where the path may lead, go instead where there is no path and leave a trail.

cookiesecond

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Re: Hello - its good to be back
« Reply #7 on: May 07, 2006, 07:03:13 pm »
Raydean,
I understand how you felt. Although my outcome was good. I did have a few people awaitng surgery waiting to hear how I did. My surgery went well but I ended up with menningitis and was very sick and readmitted to the hospital.My second trip to the hospital was longer than the first. The doctors' said it could have been fatal. I wanted to let people know how I was but I didn't want to worry them because eventhough meningitis is a possibility it isn't the usual.

I am glad people posted their experiences good or bad. I have really learned a lot and feel connected. I know you have dealt with a lot and I am glad those days are behind you. I am 8 months postop and doing good . I still have some nausea and dizziness at times but overall I am doing good and I praise God for it.
Take care,
Lynn



Tony,
I would like to hear your story. I'm glad things are better for you now.
Lynn