Author Topic: Five Long Years - A Poem  (Read 5201 times)

G_Man

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Five Long Years - A Poem
« on: August 11, 2014, 09:35:53 pm »
I haven't posted in quite a while.  Today is 5 years since my initial diagnosis in 2009.  Hitting this milestone resulted in my writing this poem which I offer at this time.  It's really directed at those outside our "New Normal" world.  It's just an expression of how I'm feeling now.  You probably won't agree with most of it but I offer it as is.  I'm not much of a poet but I get an occasional itch driving me to express myself.

Five Long Years - A Poem by G_Man

Today it's 5 years since I was told.
The news was bad as well as bold.
It wasn't the worse fate.
But the situation wasn't great.
I heard a new term, Watch and Wait.
I was urged to accept the new normal.
And at times it's pretty awful.
The loud pitched scream and guarded gait.
But to others I'm walking strait.
Everything they said was true,
 the dizziness, the forgetfulness, the headaches too.
It's a hidden situation to YOU, YOU and YOU TOO.
So every year, it comes around.
I go to that place, lie down to the pounding, awful sounds.
I make the appointments and do the deed.
And pray to God that it's all I'll need.
And hope for another year or more.
That I don't fall on to the floor.
The group I'm with, they know the score.
They've been there and seen it all before.
At times I feel I can take no more. 
Then my boat sails back into shore.
For a moment or two I look for an escape door.
Then it’s back to the same old chore.
I hope YOU never know this score.
I can't explain it anymore.
Diag: 08/11/2009 Left side
AN: 0.6cm.  65% Hearing loss, tinnitus, fullness, minor motion issues.
hearing loss over 25+ years.  MRI in 2000 showed nothing.
Optical Atrophy from infantcy
Watch and Wait.
As of 2017 I am on a 2 year MRI frequency.

bethtretrault

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Re: Five Long Years - A Poem
« Reply #1 on: August 12, 2014, 04:44:46 pm »
 :)It is real and reflective of how I feel too. Poems express feelings and your poem confirms I am not alone.  Thank-you.
beth
12/2013 5mmx4mmx4mm left
tinnitus, w&w
5/2015 7mm-louder tinnitus, occasional dizziness
retro sigmoid 11/2015

G_Man

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Re: Five Long Years - A Poem
« Reply #2 on: August 12, 2014, 06:55:36 pm »
Thanks Beth and welcome to ANA. 
I'm lucky to have an excellent local support group here in N.Y.C. 
If you search for my ID you will find my other poem which you might enjoy as well.  I wrote it a number of years ago.

Diag: 08/11/2009 Left side
AN: 0.6cm.  65% Hearing loss, tinnitus, fullness, minor motion issues.
hearing loss over 25+ years.  MRI in 2000 showed nothing.
Optical Atrophy from infantcy
Watch and Wait.
As of 2017 I am on a 2 year MRI frequency.

MG

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Re: Five Long Years - A Poem
« Reply #3 on: August 13, 2014, 05:11:20 pm »
G-Man,
Thanks for the poem. You expressed the W&W quite well. I have only been on this train ride for one year, and sometimes I just want to get off and get rid of it but then I change my mind and get back on the train and hope and pray that the next year will not show any growth. So I wish you the best and others who are on W&W!

MG
Resides Inverness, Fl.
Diagnosed w/ AN tumor Aug 2013  9x5x6mm
 2016  1.3 CM Touching Brain Stem 
'Wait and Watch' is over. w/ symptons of tinnitus along w/ ear pain and pressure most every day. Will be having Cyber Knife in June 2016

G_Man

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Re: Five Long Years - A Poem
« Reply #4 on: August 13, 2014, 08:54:22 pm »
Thanks MG.  What I find helps is utilizing a local support group if you have one in your area.  You can learn a lot from the other group members and the guest speakers they bring in to the meetings. 
And of course you know the value of the rest of the organization, pamphlets, forums, willing to talk list, etc..
Hang in there.
Glen
Diag: 08/11/2009 Left side
AN: 0.6cm.  65% Hearing loss, tinnitus, fullness, minor motion issues.
hearing loss over 25+ years.  MRI in 2000 showed nothing.
Optical Atrophy from infantcy
Watch and Wait.
As of 2017 I am on a 2 year MRI frequency.

MG

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Re: Five Long Years - A Poem
« Reply #5 on: August 15, 2014, 03:45:37 pm »
Hello G-Man,
Unfortuantely  I live in a small town in central Fl. and the nearest support group is in Gainesville. It's about 3 hours away and most meetings are in the evening so I can't go all that way. I will just keep reading the posts on the forum and try to keep positive vibes going! :)
Take care, MG
Resides Inverness, Fl.
Diagnosed w/ AN tumor Aug 2013  9x5x6mm
 2016  1.3 CM Touching Brain Stem 
'Wait and Watch' is over. w/ symptons of tinnitus along w/ ear pain and pressure most every day. Will be having Cyber Knife in June 2016

G_Man

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Re: Five Long Years - A Poem
« Reply #6 on: August 15, 2014, 04:53:13 pm »
M.G.
I fully understand your situation.  I almost moved to Southwest FL.  Then I realized that life would be pretty dull as a non-driver. 
One very worthwhile part of the website is the recordings of the last symposium.  I attended the previous symposium and it was really worthwhile.
G_Man
Diag: 08/11/2009 Left side
AN: 0.6cm.  65% Hearing loss, tinnitus, fullness, minor motion issues.
hearing loss over 25+ years.  MRI in 2000 showed nothing.
Optical Atrophy from infantcy
Watch and Wait.
As of 2017 I am on a 2 year MRI frequency.

MG

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Re: Five Long Years - A Poem
« Reply #7 on: August 17, 2014, 10:02:40 am »
Thank you G_Man, I will tune in.
MG

Resides Inverness, Fl.
Diagnosed w/ AN tumor Aug 2013  9x5x6mm
 2016  1.3 CM Touching Brain Stem 
'Wait and Watch' is over. w/ symptons of tinnitus along w/ ear pain and pressure most every day. Will be having Cyber Knife in June 2016

EzGee

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Re: Five Long Years - A Poem
« Reply #8 on: January 09, 2015, 11:56:05 pm »
Need guidance please - back in 2011 I lost hearing in my left ear and was "diagnosed" with an eroded stapes.  Surgery to replace it revealed a facial neuroma.  Subsequent testing found a loss of taste, with developing dizziness, etc.  A second surgery to confirm isolated a left side FN (don't remember the size).

Since then, I've opted not to have further MRIs/CTs due to radiation exposure issues (numerous other ones due to loss of right eye over time).

My current problems:  1)  I fear my hearing is overall degraded (both ears); is this possible?  2) and most important, I've developed in the past three weeks a definite pain in my entire lower jaw that at time borders on paralysis.  Is this a symptom of advancing FN?

Thanks for any and all replies ... GL

CHD63

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Re: Five Long Years - A Poem
« Reply #9 on: January 10, 2015, 06:46:48 am »
Hi EzGee .....

It is good that you have posted your concerns regarding your symptoms.  You might want to also start a new topic in the post-treatment area to have more people see your questions.

Two things come to mind when reading your post:

1) MRIs do not use radiation (they use magnetic resonation), but CT scans do include radiation.

2) All 12 cranial nerves originate at the brain stem so the vestibular/cochlear, facial, and trigeminal nerves are all very close together at that point.  Depending upon where your tumor(s) is located and/or its size, you could have symptoms involving any or all of these nerves.  The facial nerve involves facial function and the trigeminal nerve involves the sensation/feeling in the face.  See:  http://www.merckmanuals.com/home/brain_spinal_cord_and_nerve_disorders/cranial_nerve_disorders/overview_of_the_cranial_nerves.html

I urge you to call your doctor and share your additional/increasing symptoms and see what he/she says.

Best thoughts.  Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

CMC

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Re: Five Long Years - A Poem
« Reply #10 on: January 10, 2015, 02:14:20 pm »
Thanks for the poem G man! I have 5 years watch n wait too. And how many years before that who knows? It is so difficult for other people to understand how I feel when I appear to be fine. I think people think I am depressed because I get tired and irritable easy. And maybe I am, my body certainly is stressed. I have trouble commiting to anything because i cant think straight sometimes. Some days I wonder should I go back to the doctor or is this just how its gonna be forever. I just had mri 6 mos ago with no change in size, I think why after 5 yrs would it grow now? Then again it had to grow to its current size at some point in my life.

Question: Do  you have trouble with vision? Seems like my eyes are working harder to keep me from spinning if that makes sense. Double vision if im tired. Makes me feel super anxious and quick nap helps.

Your poem is very accurate G man!               Thank you, CMC (Tina)
Watch'n'praying my tumor doesn't grow! 11mm/9mm/8mm

 


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