Should I Tell Family/Friends

[hurdle07]

Need some input here.

I have not told friends or family that I have AN since being diagnosed 2 weeks ago.  I'm wondering if anyone has thoughts on that? 

I don't want family to worry...I can see and hear my mother now!  If I tell siblings or relatives, surely someone will slip up.  If I tell coworkers then I'm probably going to need a tape recorder to provide canned answers for the repeat questions, some from the same people week after week for god knows how long.  I don't want people treating me differently, or anyone looking at me funny either. 

On the other hand, I'm a caregiver for my father who lives with me and has some issues...I sure could use some relief from family there!  The only person I told at work was our center's director due to the company out-sourcing our jobs in 1 month.  I need to be able to count on insurance for whatever treatment I decide on, and not have to worry about the "pre-existing conditions" clause if/when I move to another employer.  Funny though, after telling the director, I do feel better.  I also have you fine folks too

Has anyone regretted telling family, friends, or coworkers?

thanks.

[Jeanlea]

Sorry to hear that you have to experience this problem.  I think whether to tell friends and family is different for each person.  It sounds like it might help you from you've said.  I chose to tell friends and family right away.  The support from everyone was amazing.  I did have to call one person and quell the rumor that had heard I was dying!  She was happy to hear that wasn't true.  Most people wished me the best and wanted to know how to help.  My friends at work even took me out to eat the week before my surgery. 

Good luck with your decision.

Jean

[Boppie]

I felt it was best to just come out and tell a large group of friends at one time that I was having surgery for a benign tumor on my hearing nerve.  I wanted the words to reach everybody's ears at the same time and hopefully I would avoid the rumor change that occurs with spreading news.  I stated emphatically that I would be losing the hearing on one side, but that I would survive the surgery and take several months to recover.  My friends stood by me all of the way as well as my family.  I gave all of my friends and family permission to explain my deafness to those who asked.  I am glad I was factual and straightforward with people. 

One person I did not tell...my 87 year old Mom.  She just didn't need to worry about it.  My brothers and sisters agreed with us, we just didn't tell her.  She lives very far away from me.

However, I still get questions about how my hearing is recovering.  It seems we believe humans can regrow certain body parts.  

 

[leapyrtwins]

I told my parents right after my ENT called me and said my MRI showed a tumor - mainly because I was so freaked out and didn't really know much about what kind of tumor I had or what the future would hold.  They were the first logical choice, since my kids are both 11 and I have no spouse anymore.  After my first post-MRI appointment, I told my boss since I was trying to decide on treatment options and needed to know how realistic it would be for me to be off work if I decided on surgery.  After that I told the rest of my family, then most of my close friends. 

Telling family was a no-brainer and especially important to me as a single parent since I needed my family's support during my recovery.  My mom and one of my sisters moved into my house while I was in the hospital so they could be there for my children.  Once I got home from the hospital my mom stayed for another 5 weeks or so and was basically my cook, chauffeur, caretaker, etc.

Once I made the decision to have surgery I told people at work.  In my case I felt it was imperative to tell my coworkers because I come from an environment where people will make things up if they don't know the truth.  Like I told my staff, if I didn't come out and just say what the problem was, rumor would have it that I had a brain tumor, was terminal, and only had 6 months to live.  I just had 1 month between diagnosis and surgery.  I told my coworkers as soon as my treatment decision was made so I had time to deal with questions in person before my surgery.  Like Boppie, I have coworkers who know I am SSD from the surgery who occasionally ask me if I can hear yet.  Guess they just don't get it that this is permanent 

Even today, more than 7 months post op, I find myself explaining my AN to people.  Although it was removed, I was left with SSD and routinely have to tell people that I can't hear out of my left ear and why I can't do so.  In addition to having to tell this to strangers, I have to explain it to acquaintances who I haven't seen for a while - like our auditors at work.  Last year at this time, I had no hearing issue; now they are back for our annual audit and I have a hearing issue.  After a few days of asking them to repeat almost every question they asked me, I just decided to explain the situation.  I'm hoping to have BAHA surgery soon and I'm sure that will lead to even more questions.  It's just human nature.

Jan     

[mindyandy]

I found out about my 1.4cm in Sept. of this year. I have yet to tell my family. My husband and couple of friends know. I dont want my parents to worry. I will tell them when I am ready. I have not told my oldest son yet either. I just dont think that I am ready yet. I'm sure you'll tell them when your ready.

[ppearl214]

To this day, I still wonder if telling my co-workers was a smart move or not..... they are accommodating to me now in light of all that goes on with me (ie: dr appts, days that I don't feel well, etc).  Yet, I don't want to be looked upon funny by them knowing. For the most part, for me, I don't regret telling them.....

My family situation is a bit different as I lost a sister to a malignant brain tumor. So, to tell my folks that child #2 has a brain tumor (albeit benign) was difficult. Telling my mom was the worst.  I sat back and realized that each family member is going to deal with their emotions about the news in their own manner and I couldn't deny that from them -- they are certainly entitled to the emotions they felt at the time.  I knew that their reactions was a reiteration of their love and concern for me.  And I needed that love.

You will know in your heart and gut what will work best for you.  Families are there to love and support.  So are true "unconditional" friends. I lost a few friends along the way (I did a post, prolly in "Archives" now about how to react when those in your life disappear after sharing the news... it was a great post with lots of wonderful feedback from many here on the site). 

You will know what is best and how to go about it.  Remember, if they react a certain way, they need to as its their coping mechnism kicking into overdrive. But, I have a sneaky feeling that once the initial news sinks in, the love and support you will feel will be worth its weight in gold

You will know what to do... trust your instincts.

Phyl

[Mark H]

I never did tell my parents about te AN's or any of the tumors that might start causing me problems. My dad was finally losing his fight with cancer when I was diagnosed (he was my mom's caretaker until the end then she moved in with my niece) and since AN's tend to grow slowly I figured there was no need to say anything. I think for me it was the right decision. Dad died last August and mom went this past January, and neither one of them had that extra worry. The AN's are still real small and the neck tumors (NF) have just lately started to become a problem that needs to be addressed.
Mark

[er]

Hello hurdle07,

Let your heart be your guide. I told family and friends. My family worried and some friends didn't really understand.
What ever you decide is the right thing for you.
my prayers are with you and hugs
eve

[sgerrard]

Hi hurdle07,
 
Welcome aboard.

You might wait till after the holidays to spill the beans, but I think you will find that there is a natural right time to tell each person. I just wrote this in another post, but I can say it again here too: you tell each person what they need to know, when they need to know it, or when you need them to know it.

Although you may find people have too many questions, you may be surprised, as I was, that some people just lose interest once they know that you will still be around afterwards. You may even find yourself wanting to remind them that while the medical treatments are pretty good, it is still a tumor in your head, and your life is not exactly the same as it was before diagnosis.

You will also find that you are really glad you told some people, who turn out to be very supportive and helpful. And of course you can always come to this forum, and chat or whine or ask questions as much as you like. We're used to that. 

Steve

[kat]

Hi Hurdle07

Everyone is different and only you can ultimately decide who to tell .  Only my immediate family including my husband sister and sister in law and two close friends know . My elderly father in law does not know since he worries about everything . Because I had GK it was easy to keep a secret since I was only away for two days and there were no obvious physical signs that I had had the treatment . Good luck with your research and remember that you do have time to make a well informed decision on treatments.

Best regards Kat

[debora]

Mark,

You have my deepest sympathy with all of the losses in your life and the battle you are fighting with your health.  I hope you have a good support of family and friends to help you deal with everything you have going on.
Many hugs,  Deb

[Joef]

I work I explained it as a ear tumor .. I tumor behind the inner ear and pressing on the brain ... (which is true!) .. but never used the word "Brain tumor" ... it just made it sound worst to me..... (my own denial) ..

[hurdle07]

Thanks everyone for sharing your thoughts and experiences.  I can see from some of your posts and signatures, that many are climbing, or have climbed, bigger mountains.  God bless you!

My initial post it seems may have been bit of a knee-jerk reaction.  I agree with what many have said, as time goes on I will know who to tell and what details they need to know. "Kat" made a good point about the discreetness of radio treatment should I decide to go that route. 

For now, I think the only people that "might" need to know are my siblings.  I've been trying for the past 2 years to get them more involved with my fathers' care, so maybe now I can use this to drive my point home   Just can't afford to have my "worry wart" mother find out!  Will have to think more on this.

thanks all.

[Sue]

It's interesting how different people handle the question of telling employers, friends and family what is going on with this ailment. For me, I had that fullness in the ear and tinnitus that I complained about to my friends and family, so most of them knew I had symptoms of something, so it never even occurred to me not to tell them what I had.  Blabbermouth that I am...I just told them.   

Best of luck with your treatment.

Sue in Vancouver

[Charlotte Lady]

Hi
I just wrote a decent eloquent response on how I told everyone...then my computer crashed.  And lo and behold it didn't post.  I'll try again.

I told family, except for Mom, as the stuation progressed.  I had a two month period between diagnosis and surgery of surgical opinions, etc.  My sister and brother knew exactly what was going on and what I had decided to do.  I needed their support, as well as their thoughts and insights into the surgery. 

My mom, I waited until the day before surgery and peppered the discussion with "microsurgery", "medical advances", "short time in hospital", "drill a little hole"-all sorts of minimalizing expressions.   I was sort of nonchalant about it, telling her I waited until then to tell her because I didn't want her to research it on the internet because of scary possible consequences. 

My coworkers and friends, I told them it was a tumor of the ear, that I'd probably be deaf in one ear and to tell others about the surgery.  I told them I didn't want to discuss it, and that if they heard inaccurancies to please correct those rumors.  Fortunately I had only two people corner me with that sympathy/piety discussion.

My boss knew how big it was when we discussed my being out for six weeks.  I think the staff realized how serious it was when I was out for so long.  The people my age (49), I think, really knew what was going on...age and maturity and life experience - that sort of thing. 

When I came back I started referring to it as a benign brain tumor.  It's just easier to explain that way. 
I minimalize it as much as possible to avoid the pity factor.  My biggest fear, even now, is to fall into a pity pit and not be able to get out.   

Donna