when you did tell, how did it go?

[opp2]

I've waited a long time to tell people about my head. For a number of reasons I'm sure you all can understand.

-privacy - it's my head, it's my business
-concerns over people thinking you're somehow impaired now - can't do your job (I"m a police officer)
-denial -If I don't say it, it ain't true
-selfishness - didn't want people talking about me like I'm terminal (you know the ones who hear the word tumor and then that's it)

and so on and so forth.

Recently I had to tell my boss that I was going to be off work and I asked her to keep it quiet, mainly because I haven't told my team yet. I supervise 10 people. I have only been able to tell two of the group, and I just got a call from one of my teams who I also consider a very good friend who was asked by someone we know but aren't particularly close too, about my 'health issues'. Well "fiddle dee dee Scarlett".

I don't know. They all tell me I should have told them before now. I just told my brothers this past weekend. They took it very well. I don't like feeling guilty about not telling folks having known for 6 months about this. What tact have some of you taken?

Did you keep it on the down low or did you tell everyone right away? If you were in my role would that change how you would have handled it?

I now have to make two very quick phone calls tomorrow to ensure two of my closer team mates hear this from me and not others. It's annoying.

[leapyrtwins]

I told everyone - except my ex-husband, who didn't find out until almost 2 years afterward; but then again, we don't talk about anything, much less brain tumors.

Anyway, I think it's a personal decision - everyone has a different comfort level.  Some people are very private about things like this, some aren't.  I work in an environment where rumors are rampant and I knew if I didn't tell my colleagues myself what the real story was they'd hear I was going to be off of work for a few weeks, was having surgery, etc., and by noon of the day I told the first person I was having the surgery they would have all had me terminal with six weeks to live.

So, in my case, it was best to just go with the truth and to tell everyone - kind of like damage control 

In hindsight I wouldn't have done it any other way.  But that's just me.

Jan

[TP]

Opp2, I can understand being a police officer that sharing your health issues may be difficult. However, the good news is this is something they can remove and you should be able to get back to work soon. I would share the news with your family,close friends and co workers. You will be surprised how people you never thought would understand or "get it" will be the ones that surprise you the most with understanding and possibly being there for you when you need it.

Hang in there. Right now the most important thing is to take care of yourself and get prepared for whatever treatment your Dr will perform. My prayers are with you!

[lori67]

I only had about 4 weeks between my diagnosis and my surgery, so I couldn't really wait too long to tell people.  I had 2 small kids and had to worry about making arrangement for them, which involved family coming from out of state, so there wasn't much time to waste.

I can certainly understand where you're coming from though - it is your head, so you should be the only one making decisions regarding that head.  And I understand not wanting people feeling sorry for you or treating you differently. 

I agree with Jan though - I've found it better to just come clean before people start to hear bits and pieces of the story and before you know it, they're telling everyone that you have the Ebola virus and only have a week to live.  People you're in contact with regularly, like family or co-workers are going to know about it eventually, so it's probably best to set the record straight up front and answer any questions they might have so they don't make incorrect assumptions.

Good luck with breaking the news and thank you for protecting and serving! 
Lori

[Sue Vogel]

You bring up an interesting point and one I have not seen discussed on the AN site.  I should imagine that the individual circumstances have a lot to do with when one decides to divulge the facts to friends, family, and coworkers.  The AN site seems to be a melting pot for all tangents of acoustic neuroma encounters from "maybe it's an AN" to "watch and wait", to radiation and cyber knife, to microsurgery and what I reference as the "giant hole in the skull!"  Because we're all individuals with different needs, it's hard to pinpoint the right time to say anything.  My husband and I didn't tell (except our children) until we met with the surgeon and had a surgery date with details and expectations.  But we had less than four weeks between diagnosis and surgery (misdiagnosed for many years; tumor had made it to the brain stem.)  Honestly, it was very hard for me to tell.  I'm known for my strength and leadership as a science teacher and department chair.  It was hard for me to show weakness.  I started by telling two very close coworkers because I needed their help in preparing to miss a lot of work.  It turned out to be a very smart move as they were pillars of strength for me and stood by me when I informed my department of my approaching surgery.  It was one of them who informed our staff when I was not in attendance (pre-surgery tests.)  I could not have faced the entire staff in my emotional state.  I told my three principals together in a group, but again I found it very hard and emotional. My husband did not tell his staff (he manages a SAM's Club) until right before my surgery.  We didn't tell many others as time did not afford the option, but the ones we told were absolutely angelic about it.  We had many prayers, love, food, and devotion sent our way.  I felt very undeserving.  It was as humbling as the surgery was surreal.  Sharing the news has no rules.  I think you have to do what feels right for you.  Personally, I talked to GOD about it more than I talked to people.  It turns out that was the most important communication.  Bless you and best wishes for a positive experience.

SUE

[opp2]

I only had about 4 weeks between my diagnosis and my surgery, so I couldn't really wait too long to tell people.  I had 2 small kids and had to worry about making arrangement for them, which involved family coming from out of state, so there wasn't much time to waste.

I can certainly understand where you're coming from though - it is your head, so you should be the only one making decisions regarding that head.  And I understand not wanting people feeling sorry for you or treating you differently. 

I agree with Jan though - I've found it better to just come clean before people start to hear bits and pieces of the story and before you know it, they're telling everyone that you have the Ebola virus and only have a week to live.  People you're in contact with regularly, like family or co-workers are going to know about it eventually, so it's probably best to set the record straight up front and answer any questions they might have so they don't make incorrect assumptions.

Good luck with breaking the news and thank you for protecting and serving! 
Lori

LOL you are so right about the rumours!
Thanks Lori, and you're welcome. I love my work. Truly I do.

[sgerrard]

I posted a print of my MRI on my bulletin board, and happily explained it in full detail to anyone who wanted to hear.

It is really a question of what you are comfortable with. I think people mostly pick up on how worried you are about the outcome, and take their cue from you. For me they seemed to want to know if I would be a zombie afterwards, and once it was clear I would be back at work like before, they pretty much forgot about it.

Steve

[Kaybo]

As I have said before...I was young, dumb, naive and BLONDE (no comments, Lori).  I actually had less than a week...we told whomever wanted to hear.  I had to write a letter to the parents of the children in my room so everyone knew immediately (I was only to be there 1 day after the letter went home & before I would be gone for a good while).  HOWEVER, things would be VERY different now since I have children of my own to consider! 

K 

I did get reprimanded from one of my favorite college professors that I didn't let him know personally...he found out when they announced the prayer request in chapel with a thousand other of my closest friends!! 

[Jim Scott]

Good subject.

As others have stated before me, 'announcing' your diagnosis and scheduled surgery is a uniquely individual decision that is dependent on a host of factors, such as your job position, your closeness with family and your friends level of concern.  It's almost impossible to keep AN surgery a 'secret' but withholding the facts for too long can make those close to you feel 'shut out'. 

I went from the fateful MRI scan to the OR within about 2 weeks so I didn't have much time.  I was retired so telling co-workers was not an issue. I'm normally a private person that doesn't care to trumpet my personal 'business' to others but my wife was very concerned and so we quickly made my AN and scheduled surgery 'public'; that is, we told all of our friends, always emphasizing that the tumor was benign - not cancerous.  I announced my diagnosis and scheduled surgery to my church family as a 'special announcement' (made by me, from the pulpit).  The outpouring of concern was heartening.  Our minister and 4 Elders made a surprise visit on my surgery day to see me off to the OR (along with my wife, adult son, my brother-in-law and sister-in-law) at 7 O'clock in the morning!  True devotion. 

After my successful surgery, I 'laid low' for a few weeks, recuperating, but was out and about within a month (driving, etc).  Lots of friends and acquaintances were interested in my recovery and I got the "how are you?" routine for some weeks, but eventually, that ended and I was just 'Jim', again, no longer the 'poor guy with a brain tumor'.  That was the best part of my recovery.  Now, 3 years out, I'm fine and the whole episode is becoming a distant memory.  No one even mentions it, anymore, which is fine with me.     

Jim

[epodjn]

Yes, this is a good subject.
I had two months between diagnosis and surgery so I just kind of sat on it for a little while. Actually, I had been on the internet looking at symptoms and had diagnosed myself before my MRI but wasn't sure so I didn't say anything to any one but the doctor until my appointment. He shook his head and said yes, you may be right but lets wait and see. Afterwards he told me he was shocked that I had figured it out on my own. Those days inbetween were good to have. It was nice to have it all kind of settle in my mind without having to deal with others reactions and emotions. I told everyone a few days after my MRI and I was pleasantly surprised by all the love and support. Everyone is different but I totally understand needing sometime to keep it to yourself. I think it's a good idea to not keep it to yourself too long. I can really hurt the people around you. I also understand wanting everyone to understand that you are still capable of doing your job and that you will still be you. Heck, I still feel that way. As soon as people find out what has happened they give me that look. . . .like is she "ok". But if you give them a chance to see that even though you may look a little different (and you may not) that you are still ALL THERE!! Most people treat me just the way they did before and I'm very thankful for that.

[tenai98]

My story is I freaked when I was told there would be a 9 month wait for an MRI to eliminate the possibility of a brain tumor...I didnt take that to well and went to a private clinic...In the mean time, I explained (after viewing my MRI and noting a white blob) to my family and co workers (work is booked many months in advance) what I suspected on Aug 5/08...It was confirmed by an ENT on Aug 28/08.   Some people reatced funny...like one woman when I told her I had a brain tumor, said'Really??? you look normal"  I found that on this journey it has given me an opportunity to educate people on the importance of protecting their hearing.  As I teach driver ed to 16 yr olds, I try to reinforce "PROTECT UR HEARING'.  It has been fun to watcch and listen as to how people react...Like when they see the dressing on my head (from Baha surgery), they want to know what happened. So I tell them 'uhmmm well I had a brain tumor that left me deaf and this is an implant to attach a hearing aid' and then change the topic if I can...the look on their faces is really priceless. They dont know whether to believe me cuz  I look NORMAL and not like Frankenstein.
Jo

[leapyrtwins]

opp2 -

found a thread with a topic similar to this one - thought that in addition to our replies, it might be helpful also

http://anausa.org/forum/index.php?topic=5637.0

Jan

[another NY postie]

I pretty much starting telling people within days of diagnosis.  I told my parents first over the phone and it was hard not to cry.  I felt like I needed to reassure them.  Then, I remember when I told to tell my principal, my chair and a couple of my close fellow teachers, I could not do it without tearing up and feeling a tremendous amount of anxiety.  I remember taking a deep breath and having to wave my hand in front of my face to try to pull myself together and complete my thoughts.  Then I took a deep breathe and sent out a massive email to other family and friends, apologizing for telling people this way and asking for help.  I said I was researching options/doctors and looking for anyone who had had an AN or anyone who knew doctors, in particular neurosurgeons, because I wanted to know WHAT they would do and WHO they would use.  The response was amazing!  Besides the notes of support and love, they forwarded my email and those friends forwarded my email, and I heard from complete strangers who had known someone who had an AN, or who were doctors, etc.  It was truly amazing.  I heard from one NYC Park Avenue ENT who offered to look at my films.  I got opinions from a couple neurosurgeons.  I could not believe that complete strangers took the time out of their day to respond to me.  So for me, letting the "cat out to the bag" in such a big way proved liberating.  The more I talked about it, the more comfortable and less scared I became with it.  And when I ran into people, they already knew and it didn't seem like this big thing that was weighing on me.  

[Nickittynic]

I told everyone right away, and then started a blog so the world could follow along, too!
But my circumstances were slightly different because 1) they weren't sure exactly what kind of tumor I had but it was on the brain stem so they didn't want me to go to work right from the start, so I had to call work from the ER to tell them to take me off the schedule, and 2) my father-in-law had just died of a brain tumor one week prior, so it was important to me to get the facts out before people heard the wrong thing and really freaked. Plus, that's just the kind of person I am. It worked out well for me because the outpouring of support from just everywhere got me through the month between diagnosis and surgery.

[alicia]

It tore my heart out every time I told someone.    So I chose to tell everyone close to me that I needed to and let word of mouth take care of the rest.  It is what it is and, in my opinion, you can not spend your energy on people you are not in direct contact with.  I noticed that once it was out - the initial shock wore off and people go on with their own lives quickly.  Hang in there, Alicia

Make sure you mention benign first!