What is the best way to share my upcoming surgery with others?

[Kate B]

Actually this question surfaced in another section, but has some universal applicability. The person is very active with her children's school and was wondering how to approach explanation with the various groups.
Denise said:
"I guess the nervousness has set in - in the fact that I keep myself SOOOOOOOOOOOOOOOOOO' busy with my kid's school (Parent Council, Year-Book Committee, Year-End Party and my Condo. Board) - that I really need to talk to all these groups and let them know that I may not be able to fulfill my duties from now until June (depending on when the surgery is) - how do I even go about approaching the kids school and explaining all this to them - I don't just want to come out and tell them I have a brain tumor ..... what do you say?  - "It's benign ..... but I have a tumor"......."

This is one of those questions that has "enduring" qualities.

How have others handled it?

Kate

[Kate B]

My own personal preferance included this explanation:

I took a non-public approach with my AN.  I found that when a person uses the term "brain tumor" it evokes a lot of reaction.  I decided to tell people at work and with my community (involved with the local school district too) that I had a problem with my inner ear and was having surgery. If they questioned further, I used the term "benign growth" rather than "benign tumor". I mentioned going to California where the doctor specialized in the surgery to attempt to retain my hearing.  To me it wasn't really anyone's business, yet I knew working in a school district at the central office that I couldn't disappear for five weeks without saying anything.  I chose to say very little about it at the time and figured if need be, I could provide other details later.  People accepted that and it fended off the rumor mill that can happen in large organizations.

To use Phyl's line, "I'm passing the popcorn"  Who's hungry?
 

Kindest regards,
Kate
 

[sgerrard]

I think part of it depends on your own personality and interests. I work as a software developer, and at one time worked as a tech in a biochemistry lab. I fall into the category of techie or geek or whatever you want to call it.

I got a hold of the radiologist's report on my MRI, and extracted several quotes that I liked. I got the CD of the MRI, and found some choice pictures of my head. I put together a little Word document, with pictures and quotations and little arrows pointing at things. I have a copy pinned to my bulletin board in the office, and I emailed copies to a number of friends, family, and co-workers.

If any one wants to stop by and discuss my AN, I am happy to point it out on the MRI pictures, discuss the finer points, and generally overwhelm them with the fascinating details of my "benign neoplasm of the brain/nervous system", as the insurance company put it.

So it is really a matter of personal style how you deal with it.

  Hey, wanna see my "posterior fossa T2 turbo-spin echo 3D images", and see if you agree that "the lateral extent of the lesion does not quite fill the fundus of the internal auditory canal" ?

Steve

[Yvette]

You're so funny Steve. I love ya.

I guess it depends on your situation. My family goes into hysterics for everything, so I told no one. It's my little secret. My hair is long, and they don't live close, so it's no problem. I also work at home.

Yvette

[Kaybo]

Yvette~
Did I read that right that NO ONE even knows that you had surgery?  A translab??  Who helped you recover?
K

[diverjeff]

Hello all,

Denise wrote:

I guess the nervousness has set in - in the fact that I keep myself SOOOOOOOOOOOOOOOOOO' busy with my kid's school (Parent Council, Year-Book Committee, Year-End Party and my Condo. Board) - that I really need to talk to all these groups and let them know that I may not be able to fulfill my duties from now until June (depending on when the surgery is) - how do I even go about approaching the kids school and explaining all this to them - I don't just want to come out and tell them I have a brain tumor ..... what do you say?  - "It's benign ..... but I have a tumor".......

    Denise, you are very, very brave with your decision for surgery. KNOWLEDGE IS POWER!!  If your decision is an informed, prayerful and honest decision then I would say your decision is the right one.
    I have to ditto Kate's reason for explanation. My wife was just diagnosed last week (Feb 6) and it has been a challenge deciding how to describe her illness. We told our closest friends and relatives straight up facts.  To her co-workers and her managers she described her condition as an Acoustic Neuroma and will most likely have it surgically removed.  When asked how long she might be away from work she told the truth - I don't know.  From what I have read everyone seems to have different results. She did say the "growth" is benign and once removed, other than loss of hearing, there is nearly a 100% chance of full recovery.  That explanation seemed to satisfy.
    In your screen name I see 2boys. I would think your concerns of mortality are justified.  Your feelings are not selfish or self centered as you have a great deal riding on your decision. Thankfully, as you can see, your not alone.  Isn't it comforting to know you have a place to go where, "Everybody knows your name?" 
    If you have any boogie-bears trying to invade your thoughts, air them and let others lend support. We're all here to help each other. Hope is a good thing !!


    I believe Steve hit the mark.  One's personality and attitude has a tremendous impact when telling others about AN.  After my wife was diagnosed and before telling anyone, even our son, we searched the internet for information.  Once we understood this "speed bump" in our lives, telling others was easy.  We didn't want to overwhelm anyone with lots of facts and figures - just the basics.  She has a benign growth behind her ear that will someday have to be removed. The doctor said  surgery would be easy because there is so much open space between her ears to work with.  If however, someone asks specific questions we give specific answers.
    We kinda used Steve's approach with our families who have internet. We took one of the pictures from the MRI, added arrows pointing to the tumor and wrote, Coty's boo boo along with information about AN.  When telling someone about AN, a little humor (not TUMOR) lets he or she see your not afraid (even if you are).   When friends and family see you at ease with your condition it also puts them at ease and they become more comfortable asking questions.  This "comfortability factor"  is allowing our family, friends and my wife begin the healing process starting from the heart. 
   

Safety & blue skies,

DJ

[Cheryl R]

I had posted earlier about how talking to others about what you have and giving a brief description of it is a way also of educating others about acoustic neuroma.   I have mentioned this website to many,many people as a way to further understand it without having to go into complete detail.                 How much one likes to say about ones own affairs depends on ones own personality.    We all are different in how much info we give to others.                 
I am a nurse and sharing my own AN story made one dr do a MRI to check out his own hearing loss.       Another told me she was more aware of the condition now and to watch for the symptoms in her patients.                     Unfortunately I am NF2 also so have also mentioned this  but have done less educating due to it's rarer nature.
    I also live in rural-small town america where people talk alot and also get mixed up with the details and heard more than one story that I had cancer after some of my previous surgeries. 
                                                         Cheryl R

[Yvette]

Hi Kaybo, yep you read it right. My husband of course knows and he took care of me, but no extended family knows. My family makes a huge drama out of everything, and probably would have all flown out here with all the nieces and nephews in tow to "help" me. I needed peace and calmness surrounding such a stressful time in my life!

Yvette:-)

[Kaybo]

Yvette~
That makes TOTAL sense!  And I feel better knowing that you have a husband to help you -- I thought you were all by yourself!  Whew!

K   

[Jim Scott]

Kate:

Good thread based a good question.  Thanks for asking. 

I didn't attempt to keep my AN diagnosis a secret and had the support of my (small) family and many friends.  Of course, being retired helped me avoid any workplace issues, so I'm not typical, I guess.  I suspect that a majority of the folks who were told about my 'brain tumor' thought I was a goner but my wife, who initially did the bulk of the explaining, tried to emphasize that, while it was serious, the AN was a benign tumor - not cancerous - and that I should be fine.  I was. 

Once I recovered, I would bore anyone who asked about my surgery by telling them more than they wanted to hear, which I found amusing.  They eventually stopped asking '"How are you"? - with that concerned look that people inevitably adopt when they think you're terminal or close to it.  I'm happy to report that most seemed relieved when I (honestly) replied: "I'm fine.  Thanks for asking!"

It's been close to two years since my diagnosis and surgery and I'm fully recovered.  Almost no one I know asks 'How are you?" any more - and I couldn't be happier.

Jim

[Gennysmom]

Telling others was difficult.  On the one hand, I wanted them to know what I was going through, but on the other, I ended up helping others emotionally get through it moreso than I was ever helped.  This is mostly the "aquaintances", the co-workers and people on the peripheral, my close knit group was mostly great.  I felt the need to be honest and direct, for me that works better.  I didn't want to downplay it because although benign, it's still a surgery with risk, and in my case, it was on the larger size of tumors.  Also as I read more here, I wanted to make sure everyone knew this is a surgery to prevent future complications, but one that would leave me not as good as I was before...unlike a lot of surgeries that "correct" issues. 

I think everyone needs to handle it within their own comfort zone, luckily I don't have a ton of relatives and no one wanted to fly in to help.  Which is fine, I had plenty of help, but I can see wanting to avoid further stress for some!      Just make sure you get what you need and let people help you!   Being able to recover in a stress free envioronment is a good thing, and I didn't have to worry because my caregivers did such a great job, as well as my AN friends here.