Author Topic: How do you tell people?  (Read 3036 times)

mallory

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How do you tell people?
« on: September 04, 2008, 09:11:36 am »
I saw another post on something similar to this, but I thought I'd ask anyways.

I've been on holidays from work for most of the summer, as have most of my colleagues, so I haven't seen them since I got my diagnosis. Next week we'll all be in training together, which is the first time I'll have seen most of them for almost 3 months. The first question is naturally going to be "how was your summer? what did you do?" I guess I'm wondering a few things:

Should I tell them right away? Even though it was quite a shock to get the diagnosis and my summer has been filled with doctor's appointments and tests, I also enjoyed my summer and took some vacations and would have other things to discuss with them. It just feels like I'm lying if I say I had a great summer and talk only about my holidays. Plus, I will have to tell them at some point, because these are people I work closely with, an they will notice when I'm off for a big chunk of time! Do I wait for a better opportunity to tell them?

My second question is how do you usually bring it up to people you need to tell? So far I have felt very awkward. It's not that I'm necessarily uncomfortable saying it or talking about it, but it never seems like an appropriate place or time to say "so, I found out I have a brain tumor. How was your summer?"

I have to say that I'm very glad I can ask things like this here, because I feel ridiculous sometimes talking about these things with my friends!

Kaybo

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Re: How do you tell people?
« Reply #1 on: September 04, 2008, 09:26:12 am »
Mallory~
I think I would ask about everyone's summer and then share about yours - say your summer was taken up with traveling and doctor's appointments and then go on to tell about your travels.  The teacher in me always wants to start with the positive! LOL!  I bet someone will then ask about why you were at the Dr.  If not, after the initial questioning has died down (or even later in the day) just say that you would like to tell them what you found out at the Dr. this summer - since you said you would share with them anyway. 
Good Luck!
K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

leapyrtwins

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Re: How do you tell people?
« Reply #2 on: September 04, 2008, 01:56:08 pm »
Mallory -

IMO you should tell people what you are comfortable telling them.  If you don't want to mention brain surgery - always a shocker - just say you have a non-cancerous tumor in your inner ear and you are having it removed.  You may also want to mention that your hearing may be an issue for you going forward - if they don't already know you are having hearing problems.  I found it necessary to explain my hearing issues to people at work, prior to my BAHA surgery, because it affected where I had to sit in meetings, etc.

In my case, I told just about everyone I know at work.  I work in a very close-knit office, but rumors are rampant.  As I told one colleague, if I don't tell everyone exactly what I'm having surgery for and why, someone will have me terminal by the end of the day  ;)

Just my two cents worth,

Jan   
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

MAlegant

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Re: How do you tell people?
« Reply #3 on: September 04, 2008, 04:25:26 pm »
Jan that is funny.  Apparently there are many rumors floating around here, including but not limited to: it was malignant, I'll be out for the rest of the semester (I'm already back at work part-time), and my favorite, "the surgery made her a much nicer person". (That last one might actually be true.)

Tell the people you are closest to.  Let them tell others (this is what I did).  And know that people care about you and will want to respect your wishes.  It will be fine and your friends and colleagues will rally round you.  I received cards and flowers from people I didn't even think liked me!

Be well,
Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

Kaybo

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Re: How do you tell people?
« Reply #4 on: September 04, 2008, 05:14:45 pm »
Marci~
I don't actually "know" you but I can't even imagine anyone NOT liking you!!

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

wendysig

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Re: How do you tell people?
« Reply #5 on: September 04, 2008, 06:31:15 pm »
Mallory,
I have to agree with Marci, telling the people closest to you at work is the easiest way to go.  Sometimes things get lost in the translation and you might have to answer a few questions, but that would happen anyway.  I'm sure you co-workers will be very supportive and understanding.

Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

msmaggie

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Re: How do you tell people?
« Reply #6 on: September 04, 2008, 08:15:31 pm »
Hi Mallory,

I have not told many people outside my immediate family because I teach in a small parochial school and it would be a feeding frenzy if the words "brain surgery" were circulating.  When the time comes for treatment, I will tell my classes and families that I have a growth in my inner ear and it will require surgery. Since my balance and hearing may be affected, I will be out for a while.  When all is said and done, maybe I will 'fess up to what it really was. I have enough on my plate w/out having my families thinking I am a goner! It would just upset all my kids and I love them dearly.

Maggie
Diagnosed  left AN 8/07/08, 1.9 CM
Surgery 12/10/08 at Methodist Hospital w/Vrabec and Trask for what turned out to be a cpa meningioma.

leapyrtwins

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Re: How do you tell people?
« Reply #7 on: September 04, 2008, 09:34:19 pm »
Apparently there are many rumors floating around here, including but not limited to: it was malignant, I'll be out for the rest of the semester (I'm already back at work part-time), and my favorite, "the surgery made her a much nicer person".

So, Marci -  do tell.  Just how nasty were  you pre op???  :D   ;) 

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

MAlegant

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Re: How do you tell people?
« Reply #8 on: September 05, 2008, 02:11:37 pm »
Jan,
A real barracuda, that was me!  Actually I'm about as nice a person as there is but I have a nasty habit of being honest to the point of discomfort so maybe my colleagues are hoping I will be more forgiving of others and less judgmental.  And maybe I will...
M
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

AMD

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Re: How do you tell people?
« Reply #9 on: September 05, 2008, 08:12:21 pm »
Hi Mallory,

I am currently going through the process of telling people at work.  I work as a nurse in the operating room, so as you can imagine, my co-workers know a little too much about what I tell them.  What has been currently working for me is that I told my closest co-workers first.  They knew that I had been worrying about a possible tumor.  Then, I gradually told about 5 of the RN's I work with daily. Then came management because I was gonna start having to ask off for Dr's appts. and such and I figured they needed to know (it made getting the day off no-hassle).  I politely asked each individual to please let me tell others in my own time and in my own way.  As far as I know, everyone has kept their word and their mouths shut.  Everybody knows I can't hear well, so this is how I have been breaknig the ice.... kinda humor-like "So, I finally figured out why I can't hear a thing you say...".  Most people have been really respectful of the information and haven't prodded.  Our department is huge, so i figure I still have upwards of 50-75 people to tell.  Soon enough they'll know something is up when they see on the schedule that I will be on a leave of abscence. 

Like Jan said, you have to put a stop to the inevitable rumor mill.  Before the day's end, I will be known to have a gigantic inoperatable metastatic brain tumor and have 2 months to live. 

Just go at your own pace and only tell people what you are comfortable sharing.  If you don't want to, there is nothing wrong with that either.   Good luck with everything and I hope it all works out for you at work :)

Amy :)
Left side 1.7 cm AN diagnosed 7/30/08
Misdiagnosed for 8 + years
Surgery, Sub-occipital, 11/17/2008 at Indiana University Hospital
Left SSD
Tumor much larger than expected. Facial nerves intact, but had RARE swelling resulting in brachial plexus injury and tracheostomy after surgery.

Jeanlea

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Re: How do you tell people?
« Reply #10 on: September 05, 2008, 08:32:21 pm »
Hi Mallory,

I found out about my tumor in the summer also.  I'm a teacher so I emailed the principal and superintendent.  I said I was giving them a heads up that I would need to be out of the classroom for about 5-7 weeks to have surgery on a benign brain tumor.  I also mentioned that I was not keeping it a secret and they could feel free to tell others.  I didn't need to tell anyone else at work after that.  Word spreads quickly in a small school.  The superintendent wrote back that another co-worker was having brain surgery (for another kind of tumor) two weeks before me. 
I let the parents of my kinders know at the open house before school.  I told the kinders that I would need to be gone to get an owie out of my head.
I only heard of one rumor where an old co-worker heard that I was going to die.  I called her up and told her I wasn't.  It was kind of fun.  lol  Not getting rid of me that easy.

Jean

translab on 3.5+ cm tumor
September 6, 2005
Drs. Friedland and Meyer
Milwaukee, WI
left-side facial paralysis and numbness
TransEar for SSD

leapyrtwins

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Re: How do you tell people?
« Reply #11 on: September 05, 2008, 11:13:42 pm »
Actually I'm about as nice a person as there is but I have a nasty habit of being honest to the point of discomfort

Man, this is one of my nasty habits too - being brutally honest.

And here I thought Lori and I were the twins separated at birth  ???

Maybe it's actually you and me  :o

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Debbi

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Re: How do you tell people?
« Reply #12 on: September 06, 2008, 10:45:34 am »
Hi Mallory-

The decision of who to tell, when to tell them and how much to tell them is very personal.  In my case, I told only a few close friends at first and asked them to keep it quiet.  I needed time to process it myself and I also wanted to control the "rumor mill."  As I got closer to surgery, I decided to tell everyone, including my clients.  I found that when I approached it in a matter of fact way - "I've got a benign brain tumor and am having brain surgery in 3 weeks and will be out of commission for a little while" stopped the onset of rumors.  I was also very willing to answer questions, which seemed to help.  I think that my decisoin not to tell most people until I had come to terms with it myself was a good decision for me.  It allowed me to be much more positive which put them at ease, too.  Plus, I didn't burst into hysterical tears!  ;D

The only thing I had NO patience for whas the occasional person who tried to tell me what I should do.  Only a couple of people did that and I shut them down immediately (yes, Marci, they probably say I'm nicer now, too!)!

Do what is comfortable for you.

all the best,
Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

leapyrtwins

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Re: How do you tell people?
« Reply #13 on: September 06, 2008, 02:33:27 pm »
Mallory -

Debbi is absolutely right on this one.  Despite all the advice and suggestions we can offer you, as with your treatment decision, you have to do what is best for YOU.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

mallory

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Re: How do you tell people?
« Reply #14 on: September 07, 2008, 09:18:54 am »
Thanks for all of your feedback. A good friend of mine knows and also works in the same office, so I'm thinking about asking her to let some people know, or at least asking her about how to tell people. Hopefully it's not too awkward!