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

[Larry]

Do we have to bow or something now?

[Battyp]

Lar..on  your knees! 

[Raydean]

I know that this is off topic of this thread, but it brings up memories of my best friend.  I was lucky enough to have Marlinda for a best friend for 15 years, wasn't anything we couldn't share, and together we were  both stronger then we were individually. truthfully she was closer to me, then family members, she was a sister of my heart. She was a amazing lady and I was blessed to have her as a friend. Marlinda was a nurse so over the years I knew i always could count on her to stear me in the right direction when health issues would come up.

2 weeks before discovery of the tumor Marlinda unexpectedly died.  She had this syndrome thing and over the years it had tossed all of the worse things it was capable of at Marlinda, from heart, vision, blood clot to the brain and she bounced back, like I said she was amazing.  

There's never a good time to say good bye to a friend and her death touched me deeply.  2 weeks after her death we heard the words  'My God, he has a large mass"  I know she was with me in spirit, but I can't tell you how much I missed her during those early days of Chet's  AN journey.  Eight years later I still miss her.  I'm lucky, I still catch glimpses of her when I see her son who grew up to be  just like his Mom, a wonderful person.

Best to all
Raydean









 Ã‚ 

[Crazycat]

More like genuflect.

[Crazycat]

Raydean,

        Really sorry to hear that. What kind of tumor was it? Was it an A.N.?

 Paul

[Raydean]

Hi Paul

My husband's tumor was 6cm AN accompanied by advanced hydrocepahus.  Was immediately hospitalized with placement of the vp shunt, followed by tumor surgery 6 days later.  In reading your posts Chet shares a similar AN journey as yours.  Since Chet had prior existing tumor side hearing loss dating back to childhood and was in extremely good health in the time period leading up to the accident 6 weeks prior to discovery of the tumor and the fact that we live in a very rural area and this was just a GP doctor talking as he viewed the scans for the first time in front of us, it was unknown at the time as to the exact type of tumor.

By sharing the above post i wanted to remind everyone to be thankful for the friends they  have, especially for the ones that stayed with them as the moved forward with the AN.  I was blessed to have Marlinda as a friend, and missed her beyond words. I was so lucky to have her as a friend. Someday ,I'll catch up with her.  There were days when I would of given anything to have her here.  Can't tell you how many times i picked up the phone to call.

Best to you
Raydean

 

[Crazycat]

Raydean,

     Thanks so much for the response!

  How is Chet doing today? I was wondering, also, what kind of growth did Marlinda have? Was it also an A.N.?

Paul

[Crazycat]

Oh......she didn't have a growth like we had. It was something else? It was Chet who had the A.N. - and yes we do have a lot in common!!

    Paul

[ppearl214]

Raydean

Thank you hun. I am so so sorry to hear of your loss and know how very much you must miss her. Sending you huggles for those times you think back with fond memories and  smile in your heart.

xo
Phyl

[ppearl214]

well, this post has not been touched in almost 1 year (to the day).. and the cycle continues... just received contact from one that disappeared from my life after finding out about my AN and all I go through.. and once again, she is trying to clear her conscience as she is leaving the state for other whereabouts..... and once again, my emotions are roller coaster for each time someone does this to me. I've decided not to ride this roller coaster again as life must move forward and I refuse to let others drag me back down.

I feel this is an important topic, especially for the newly diagnosed, as this is very much a reality for many of us.. not just for AN'ers but anyone confronted by life-changing illness.

I had to dig deep today to regain my mental strength as this cycle happened again, by one I wrote about in this post a long time ago... I still do not understand why they do this... as I may never have my answer  to it... but I know I'm stronger now and can move forward...

thanks for letting me share this with you all again.  For the newbies reading this... many wonderful insights here, in case you need it.  My hope is that you don't.

Phyl

[Shrnwldr]

I see it as those that claimed to be friends and leave :::poof:::: when there is something wrong with YOU.  Weren't there for you to begin with. They were they for themselves.  The idea of having to nuture, support, care for another human being outside of themselves is way to far fetch.  It is sad and hurtful, but mostly I think they just do not know how to care give. 

True friends will share, support, nuture, love and care.... they will be there  YEAH for Friends!!!!!  TRUE FRIENDS

[Windsong]

Hi Phyll,

I think this topic is one that is hard for us to talk about? Maybe that's why it was lying fallow for this time?

I  don't like to think about the "friends" who disappeared over my health issues. It's sad thinking really. No matter how true the "disappearances" are....

Like a death without a funeral probably. (the  lost "friendship")... what to do with it....

Move on....

My first serious health issue left me in a wheelchair, with questions about when I would walk again. I was engaged at the time. He walked. ( he had lost a bro to MS and his dad in the six months prior to my situation, and he himself had a heart attack two weeks after his brother died.)

I moved on.

Friends, co -workers too, dropped off a year and a half later after my viral attack which left me with vesitibular  problems. And, yes, as already mentioned in this thread, i later found out it was a fear of "catching" something. )and look what happened to me already  that's so "rare" was the thinking by them).

A few more health issues grabbed me and I saw even fewer who hung in there and "stayed friends". Oh I was out of that wheelchair by then and had forged a few precious friendships that were new.

Then I got the An diagnosis... and in the midst of fledgling-making some more new friends, I actually told about my An ( in my mind it was like oh , I have a diagnosis and we can do something about this one)... well, the "friendships were too new perhaps.... i haven't heard from them beyond the first call or two once they knew about my An....

Through all this I have one friend of a few decades who is still around. The rest are new. Some from sites like this. Rays of light in my stumbling in the darkness.

So despite disappointments, we move on.

Make a new life.

And move through whatever pain we experience and look forward.

Life improves and so do friendships. Sometimes from unexpected places.

Hugs all,
W.

Hi all,

I've seen this slightly discussed around here in some other threads. I've discussed this with family, coworkers and some friends/acquaintances.  I figured that this would be a good topic of conversation....so, here goes.

Why is it that when some in your life find out what is going on physically with you, they disappear from your life?

Example: 
-A man I was dating for almost 2 years found out last May of my AN.   Boom... never heard from him again.
-A dear friend of over 20 years was told last May. Now, she's always the one to hear of an illness, jumps right in, always there.  I tell her about me... boom, no phone calls, nothing. Did get a holiday card from her in December, but nothing more.

My best friend of over 40 years (Kate) and I were discussing it in the car yesterday. She reminded me that she will ALWAYS be there for me. (you have no idea the tears I shed when she said that).  A coworker and I discussed it this am. My coworker couldn't understand why people would do that? Her comment was... were they scared that we would "infect" them or are they that heartless?  My only comment to her was... "well, I guess it's all part of human nature".  I have no clue if I'm right or wrong on that but, I wanted to throw this all out at you.

Some of the folks here and I have also discussed this and what an isolating feeling when someone we always held as dear in our lives, does this to us.

Are many of you in the same shoes as this? Do you find that others (in your private lives) have disappeared or when you try to call or such, don't even both to return the call or check up on you?  How do you deal with it?

I know this doesn't just apply to AN patients but cancer patients, etc as well. Has always been a sore spot with me that folks will do this but just trying to understand the human nature behind this kind of action.

Phyllis

[ppearl214]

you all rawk.. and I thank you so very much for sharing your thoughts on this... W, I am at a loss on what to say. Your journey mirrors mine in many ways and for you... or anyone here... if I could take away the let down that others have caused us, trust me... I would.

I told this person "Bye".   I replied to her email that my past is done and I have moved forward.  She tried to clear her conscience in her reply to me, but all I replied back was "Bye"... I think that last email of one word told her exactly how I felt... I'm hoping it wasn't too bitter a pill, but the bitter pill she gave me has discipated from my system and I have moved on. 

I know this thread lay dormant for a while..... and sometimes, folks such as myself, need to vocalize these emotions as what this journey (or any other life changing illnesses) brings.  I am so blessed you all are here and give of your shoulders and good ears.. and most of all, your hearts... as we band together, hand in hand while we endure this. 

Yep, I am truly blessed.

Thanks again,
Phyl

[nancyann]

I think those that leave us weren't meant to walk along the same life's path as we're on;  those that 'hang in there' thru the good, the bad, & the ugly are still on the same path as us - granted we experience different things even though we're on the same road, but those are the 'true family/friends'....   I wouldn't give them up for the world, I don't have to, they're the ones who stick by you & vice versa, still on the same road, whether smooth or bumpy.   When I look at it this way, it doesn't hurt so bad; it is what it is, reality.

[Omaschwannoma]

SIGH!  I read all the pages of this and the emotions came back.  I too experienced the loss of people I thought would be there and shocked me when they turned their backs--not really though.  My story is embarrasing to me, but when I think back over the years about the personality of these people I'm not surprised, just disappointed in myself for not wanting it to be true and never seeing it clearly. 

I saw what my husband had known all along, I was in denial as it was family that showed their real colors.  When I was diagnosed I did not hear from my father, mother or sister rather I heard from my husbands family and my two brothers--bless them!  Before my surgery my father had emergency surgery, I was there to visit after as I was in school and had already used up my hours so had limited time to get away.  Then my mother had her surgery for breast cancer, I was unable to be there the day of surgery, in school then, but called to wish her well on her special day and did arrive to stay at her home to cook, shop and clean for a few days.  My sister and brother were there for her as they live down the street from my parents, I live 2 hours away from them. 

A few weeks before my surgery we were at my parents for Christmas dinner and my sister loudly announced to everyone at the table how awful her life is...blah, blah, boyfriend, alone, blah, blah.  My sister has a way of turning everyones attention to her.  After her tirade I quietly said, "Yeah, life sucks then you get a brain tumor!"  Brought the whole table to a screeching halt and back to perspective.  Even after my statement no one talked about my upcoming surgery or asked how I felt about this.  I, my husband, daughter, son and soon to be son-in-law (we put his photo on a dummy body and brought him with to meet the family as he was serving his time in Iraq) had a wry smile going on inside ourselves and shared our laughter on the car ride home. 

Boy, I thought my statement would've got them to rally round me, but no.  I did not receive phone calls from mom, dad or sister before surgery, after and still nothing when I returned home with a few weeks of PT under my belt!  SIGH.  I did get the phone call from my mom saying how wonderful it would be to see Flaminco dancing that was coming to my town, "Could you get tickets for me and you?"  "Sure mom, but I won't be able to drive or walk properly in the dark."  "What? You can't drive and why can't you walk in the dark?  I was up and running around after my surgery?"...SIGH!  Silently I say to this, "Okay mom you're right, you're stronger, it's all about you--NOT!"

A friend of mine, and I use the term lightly, couldn't even pick up the phone, but profusly apologized when I called her weeks later to say "Hi, how are you?".  She managed to show up for a dinner party my girlfriend gave and sent me an invite to come to her Christmas party--I still don't get phone calls from her?!  Yes, it's all about you too.  Anyway, I am rambling and my point is, it hurts the same if they are family or friends that leave you.  Now when I am around them I feel more in control of my life as I see them more clearly, I am liberated and not afraid to admit these are my parents and sister, they are self-centered and selfish.  They need the attention more than I and that's why they are the way they are!