When others in your life find out, do they leave your life?

[dgrummer]

Thought I’d jump in the conversation too…I’ve had a rough couple of days and it might help to vent :-)

How some so-called friends/family have handled my husband’s AN has been one of the most difficult things for me.

I was shocked to find that the very people I just knew would be there for us – haven’t even so much as acknowledged we are going through anything.  One hasn’t said a single word.  I’m still on her ‘email jokes’ distribution – but she hasn’t as much as acknowledged any of my emails that I’ve sent out on how Rob is doing – even after her husband ran into Rob at work (he works with both of us) and briefly mentioned it.  She’s my SIL’s twin sister – so they have always been considered part of the family.

My cousin never said a word.  Then I found out she learned at Christmas her mother had cancer.  I sent her an email trying to comfort her – and to tell her I was here for her.  She never even acknowledged she got it.  I guess I could call her – but I’m still a little hurt and kind of feel like I’ve already been the one to make the first move.  But I know down deep she’s going through a difficult time herself.

Four days after Rob’s surgery – my SIL called to tell me how upset she was that Rob’s parents didn’t call her daughter on her birthday the day before.  Sorry - their son had just had brain surgery and they were a little pre-occupied!  While I guess she might have a right to be a little upset – I CERTAINLY wasn’t the person she should have been complaining to.  Where was she and Rob’s brother the 2 days before Rob’s surgery on his birthday – in Hawaii!! 

So while yes – it’s hard for some people to cope – others are just too self absorbed with their own lives to consider anyone else.

Then there were those folks I didn’t expect much from – and to my surprise – they were there by my side in the waiting room through much of Rob’s 12-hour surgery.

My brother finally admitted during the surgery that he felt like an idiot because he had no idea how serious this was and he apologized.  That meant more to me than anything.  Finally – someone who believed what I was saying rather than making me feel like I was just being a drama queen when I would tell them what we might expect after the surgery.

So – rather than dwelling on the friends I thought I had and lost…I’m concentrating on the friends I never really considered true friends – but ended up being there the most for me.  And of course those I knew would be there - and were!

If I've learned nothing through this experience - I've learned to not just 'think' of people - but let them know I'm thinking of them.  A card - an email - a phone call - just acknowledge when someone is going through a difficult time means more than you ever realize - until you go through it yourself.

[Battyp]

Couldn't have said it better myself! 

I've found out strangers are closer to me than my own family.  Of course I've always been there to help them at thier times of need but I didn't even get a phone call from my step sisters (we've been together over 25 years).  When my sister had surgery (minor) everyone flocked to her house with soup and cheer....No one even came to see me but my sister in law and she's the farthest one away.  Put her up a several notches above the rest.  One of my sisters just had a birthday and everyone of course went to her bday party...the only reason my son and I went was to see my brother and his wife and my niece.  So sad but reality for me. 

I feel much more closer to my cyber family than I do my own!

[matti]

battyPrincess - I always wanted a sister...Wanna be my cybersister?

matti

[Gennysmom]

I'm an only child with a VERY small family, and I am always looking to enlarge my "family", so anyone that wants to join me in that is IN!!!  I value true friends as family for that reason.  You guys all rock!!!!

[Raydean]

A wise friend of ours had told us at the onset of Chet's AN journey that among all of the people we both knew, that there would be six people that would be there for us.  He also stated that not all would be the persons that I would expect.  As it turns out 3 were on my list and 3 just stepped in.  each filled a need and almost 8 years later I remain thankful to these people for choosing to walk with us during a difficult time.

We also learned that for those that turned away, it had less to do with us.  As stated in others postings it's difficult for some to accept the reality of our mortality.  For others it was dealing with there own personal fears, perhaps it brings them back to another time of personal loss or illness.  For others it was the reality that as a couple we could not do the things together that we did before.  Others are just insensitive.  ( I bet we could start a long thread with a list of the most insensitive remarks made by so called friends)  What i do know  is that while we have lost friends, we have gained friends both within our community and the cyber community  I am thankful for each person on this board, for the wisdom, compassion, understanding and just being there when answers are difficult to find.  Blessings to all of you!
Raydean

[luv2teachsped]

This is a good topic. Although I filed for divorce on the same day as I found out about my AN, one had nothing to do with the other.  Long after everything was said and done, my mom made the statement that my "ex" wouldn't have dealt with my "impairments" well.   I've had many back surgeries(getting ready for another) and he didn't deal with them well.  I think someone hit the nail on the head when they said that most of the people that can't deal with someone else's serious illness are very needy people themselves.  I found many, many true friends through the 7 months I went through recovery from surgery as well as my divorce.It's a very good thing we have this board!  Since I live alone, and my children are busy with their lives, a computer with unknown fellow ANers have become good friends and the best source of support.Thanks Everybody!!!  luv2teachsped

[Battyp]

awww you guys made me cry!

matti and Genny's mom you guys are now my oficial family!

Matti I've always wanted a sister that would treat me like a sister!  I classify myself as the invisible one in my family.   

[matti]

BattyP - Now you are making me cry... I am so sorry that your family has made you feel that way. You have been through way too much. We will always be here for you, you're not invisible.


I think you MUST be my long lost twin sister... we're both addicted to reality tv, enjoy the same eye candy, and we are both pirate wenches that had left sided AN's and oh ya, the chocolate thing too!
I'll do the sisterly thing and Yes! I will share Sean with you. 

matti

[DeniseSmith]

I have four sisters. Two older, two younger. One of my older sisters, my mom and dad came to be with me last year during my surgery. My sister Debbie, never left my side during my stay at the hospital and in rehab.  She stayed with me until I went to bed at night, and sometimes was there before I woke up the next morning. She went to all my physical and occupational therapy appts. The nurses knew her almost as well as they knew me.  She did alot of things for me during my stay in the hospital, that I am not sure I could have done had our roles been reversed.  I  cannot believe how wonderful and supportive she has been and continues to be.  She even came back for another two weeks in June when I had surgery for a CSF leak. When I came out of surgery she was there.  She lives in Tennessee and I live in Minnesota.  When we were growing up we hated each other, we fought like cats and dogs.  We couldn't stand each other.  We are only 15 months apart. Once we became adults and matured a little we have gotten closer. My parents also live in Tennessee, I knew they would not hesitate to come.  It was hard though because my Dad has dementia and he kept asking my mom who was having surgery and why.  I have seen my parents twice since my initial surgery and he asks me who hit me, because he can't remember I had an AN.  It is very sad.  My younger sisters have not called nor do they call and check on my progress.  My second to the youngest sister Dee, she calls, but only talks about herself, she doesn't even ask how I am, just goes into what is happening with her.  My baby sister doesn't call at all. 

I know this was a shock to everyone in my family and to my friends.  But I also have friends that i thought would be there for me and haven't and I have some friends who I never would have thought would be so great.    My best friend and I have gotten together twice since my surgery.  She has no time for me.  I am not trying to have a pity party.  It really bothers me and I feel that if I looked like my old normal and not my new normal, she would make time for me.

I guess what i am trying to say is human nature is so unpredictable and its sad that we have to have a crisis in our lives to find out who is and will be there for us.

Denise

[shoegirl]

Hi All,

I have been following this post with interest.  I found my AN in Oct 2005 by accident, and have since had treatment.  After the inital shock of being told about my tumor - most family and friends went on with life as usual.  Most thought it wasn't a big deal because it could be treated and wasn't cancerous.  Some became mildly interested again when it was time for my CK treatments.  But most didn't remember when exactly I was having it.  And now they assume I am "cured".  Hopefully they are right.  I think they just don't understand.  I think they hold on to the security of "it can be treated" and move on.  So I have decided not to go to them for support - I come here instead.  Where everyone understands.  I would by lying if I said I wasn't disappointed by some of my family and friends but all of this has taught me who I can trust to be there for me.

So I am thankful for all of you and your stories - they have gotten me through some hard days, weeks, months.

Wishing you all the very best! Suz

[Battyp]

I'm thinking we need one big &^% gitls night out!  We sure deserve it! 

[Jeanlea]

I find this to be an interesting topic.  My experiences with friends and family have been mostly positive.  I only found my AN because of a slight hearing problem.  My doctor called me after the MRI and told me that  I had a benign brain tumor.  My first thought was what do I do about it?  My husband has been my biggest support in all of this.  My family has been really great.  My sister and her husband came to the hospital with me.  They camped nearby (in the city) and that gave my husband a place to stay.  In the beginning because of my facial paralysis my sister was the only one who could understand me.  My brother in law ended up staying for my whole hospital stay, even after my sister had to go back to work.  When I returned home, my other sister came to stay with me for a couple of days.  Then my mom spent a week staying with me.  I also had a lot of support from friends at work.  They accepted me back, even with my crooked smile.  I really appreciate the fact that they still treated me as a fellow teacher and not as someone with a problem.  I thought that I would have a lot of support from friends and family and I was lucky enough to get it.  Now I feel really bad that I wasn't there more for my sister when she was going through radiation and chemo 18 years ago.  She actually had a chance of dying.  I never knew how serious it was. 

[Battyp]

I'm adopting Jean's family! 

[becknell]

I really do feel as if our experiences have been most positive, too. When my husband was diagnosed and our minister announced it briefly at church, people sent us cards. We kept all of the cards. They offered to help with our kids -- people we didn't even know!! Our Sunday school class collected $400 and gave it to us the day before we left for the hospital. That made me bawl like a baby!!! It wasn't needed, but it was nice, and it helped cover all my lodging expenses during the week at Duke. Most of these people, we don't even know all that well. Our neighbor mowed the lawn. My husband's mom, who is good with kids, kept our kids for a week and my parents and hubby's dad came to the hospital and supported me. OUr minister came to the hospital, too, and waited with me during the 12-hour wait -- he left for the 3-hour drive home at 10 p.m., even though I told him he could go home earlier, as I knew he was tired and he's also a diabetic!!!!! The church developed an e-mail system to provide daily updates to everyone about Ken's condition!! Our siblings had to work and couldn't be there, but we were constantly in touch by phone. My cell phone was beeping like crazy the whole week with people calling me. When my hubby was sick after discharge and we moved into a hotel for a few days, one member offered to FLY HIS PLANE UP and fly my husband home so he could avoid the 3-hour car ride!!!!!! In the end it wasn't necessary, but I was FLOORED just FLOORED. Several people made the 3-hour drive to the hospital to visit us, and others called regularly. They brought us food for a long time, too. Even now, I still see people who ask about him and how he's doing -- just this morning at the gym, someone asked me about my husband and how he is. I think part of the thing if people are insensitive is they don't really understand the seriousness. They think it's benign and treatable, so you'll be OK. When I told my best friend why the surgery was serious (delicate nerves, sticky tumor, brain stem involvement) she immediately become more concerned. She said, I had no idea, I thought they just cut him open and the tumor would pop out. It is very complicated, and people really don't understand everything. Still, I thought our experience with support was the most amazing thing I"ve ever been through and I will never, ever forget it. I still take the cards we got out and look at them and think how great people were to us.

[dgrummer]

I feel I should respond with our positive experiences too – most were wonderful..  We had hundreds of cards, letters and prayer chains from churches everywhere.  We had so many prayers from people literally coast to coast – from people I didn’t even know - I know that played a huge part in my husband’s outcome

During the 12-hours surgery – it was like a family reunion in the waiting room – at one point there were at least 20 people from our family there.  I spent most of the day during surgery either answering our cell phones or sending text messages to tons of folks giving them updates.

Two ladies that use to work with Rob’s aunt (we didn’t know them) drove the 3 hrs (turned into 6 hr drive after getting stuck in traffic) to drop off a huge laundry basket of goodies for us while we were waiting.  They just dropped it off – said hi and returned for the 3 hrs drive home.  Although I had been strong the entire time – and I didn’t even know them – I just hugged her and cried.  Complete strangers doing something like that was very touching!

Our Sunday school class brought dinner over several times during the next week and our preacher (who is brand new – and hadn’t even meet us before) came twice to the hospital, along with several of our friends.  The night before we were going home – our dear friends brought me a bottle of my favorite wine to the hospital – just for me.

So – we had wonderful support and I’m very grateful.  While there were a couple of people I expected more from – it’s just one of those life lessons.  It’s not like this was the first time they didn't quite live up to my expectations….so I’ve learned that maybe my expectations of them are too high.

We are very blessed to have a very close family – on both sides – and neither of us could have made it through this without them.