Author Topic: When others in your life find out, do they leave your life?  (Read 46806 times)

ppearl214

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Re: When others in your life find out, do they leave your life?
« Reply #60 on: April 25, 2007, 12:30:33 pm »
Karen,

I'm sorry if this drudged up memories for you and thank you for sharing that with us (and taking the time to write it... as I'm sure it was difficult to do so).. and Nancyann is so right... as are you.  In heinsight, I would not have done anything different, said anything different in the way I announced to my friends and family.  I took all of their feelings and personalities into mind when I tried to figure out the best way to tell them (esp. my folks, when they found out a 2nd daughter had a brain tumor, although benign).

I didn't mean to bring up any bad memories... my hope in re-bumping this thread, for me, what to show that through this AN journey, we remain strong.  We learn many things the hard way but in the end, we are stronger for it.  I remain strong and hope that others will gain strength from this as well.  Strength in numbers... well.. it just rawks :)

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Omaschwannoma

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Re: When others in your life find out, do they leave your life?
« Reply #61 on: April 25, 2007, 05:26:01 pm »
There was and is a very good reason you brought this subject up and I am glad.  Funny how this made me feel better knowing we don't walk alone on our AN path and share many "things".  Thank you Phyl.  As I re-read the title ".....,do "they" leave your life?"  well, no they don't, we do!  Our paths went thata way!  Never looked at it this way, hmmmmmm. 
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

GM

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Re: When others in your life find out, do they leave your life?
« Reply #62 on: April 25, 2007, 06:41:10 pm »
I believe that some people come into our life for a season, a reason, or forever...   We learn from them...and they learn from us...although the lessons may not be apparent at this time.

We were all meant to go through what we are now endouring, why...I don't know, but one day we will. 

GM
Originally 1.8cm (left ear)...Swelled to 2.1 cm...and holding after GK treatment (Nov 2003)
Gamma Knife University of Virginia  http://www.medicine.virginia.edu/clinical/departments/neurosurgery/gammaknife/home-page
Note: Riverside Hospital in Newport News Virginia now has GK!!

Jill Marie

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Re: When others in your life find out, do they leave your life?
« Reply #63 on: April 27, 2007, 09:25:59 pm »
Ah, now I get it!  I use to wonder if it was just me or should I say just my imagination.  I broke my leg a month before my Facial Nerve surgery and the cards, phone calls, visits and offers of help came pouring in.  Then I had the Facial Nerve Surgery and the attention I received diminished greatly even though the news of my tumor surgery came a week before I broke my leg.  I always told myself that everyone rallied around me when I broke my leg and added a BIT of support when I had the Tumor surgery and then got back to their own lives.  When I look back I think that most people are uneasy when it comes to dealing with cancer, tumors, MS, etc. but they can deal with broken legs, minor accidents, etc.  I gave them an easy out, they were able to show support and concern over my leg and hoped it would also show they cared about me in general. 

I read quite a few of the posts but nowhere near all of them in this thread, but from what I did read I can definitely identify with.  Luckily for me I don't understand how your family could treat some of you the way they did.  I was lucky, my Mom & Dad despite being divorced, both came to my surgery.  My Mom who was in a wheelchair made certain that she got a ride to the hospital.  My husbands parents were both there as were my 2 sisters and my husbands brother.  My husband has 3 sisters as well, one called long distance to see how I was doing before the surgery, we had a really good caring talk.  One sister came to see me and the other was busy with little ones.  The part that bothered me was that they were all there for my surgery but my MOM (her caregiver brought her to the hospital) was the only one I saw or should I say "SAW" me after the surgery.  (This is hard for me to write even after 15 years) I was really glad they were there for my surgery and understood that they had to get back to their jobs once they found out I was ok but where were the phone calls?  Most lived 2 to 10 hours away from me.  My Dad came to visit but that was it. 

My brother called me when I broke my leg because he heard from a friend of his that I needed his support, the friend didn’t know about my leg just my tumor.  When I told my brother about the tumor I didn’t hear from him again.  He called me 6 months later on Christmas Day, I told him I didn’t want to talk to him, as he didn’t care enough to call me after my surgery.  He said he called and the nurse said I was doing fine.  I told him since he didn’t take the time to let ME know he cared about me then I wasn’t going to take the time to talk to him and when he decided if he truly cared about me he could call me again and I hung up.  I didn’t talk to him for a few years, and then I decided to accept him as he is so I would feel better!

One very important thing we need to remember is that while we were or are going through a really rough time our family and friend’s lives continue and they have problems as well.  A few days after my surgery one of my sisters told me about an accident she was in a week before my surgery.  I didn’t get the whole story until about 10 years after my surgery.  She was on the freeway going home after work when a guy in the oncoming lanes was going so fast he became airborne and crossed over the medium hit the car in front of my sisters and then flipped over so my sister could see his face as he flew past her, hit the back of her car and sheared of the bumper.  For some unknown reason she was able to keep control of the car and pulled it off the road.  When the police arrived they told her they had never seen someone walk away from an accident like she had.  The others were severely injured but no one died. 

Two days before my surgery my other sister found out that her husband was having an affair. She had spent the last two days crying her eyes out while her friends took care of her children.  She pulled herself out of bed so she could be there for my surgery.  That’s when I finally found out why neither of them brought my MOM to the hospital. 

Karen, I’m so sorry that your Dad, Mom & sister weren’t there for you.  You were there for your Dad & Mom so you did all you could.  Hopefully one day they will be able to understand what you have gone through, if not, then as you say, you will continue to accept them as they are. 

Your sister is like some of the people I work with, they complain about the little things.  I worry a bit about the big things, getting another tumor, loosing the hearing in my other ear, having a bad “eyeâ€? day but the little things make me smile and laugh. 

How is your son-in-law doing?  Our youngest son was in Iraq in 2004-2005, we almost lost him do to Bacterial Meningitis he contracted there.  He’s doing fine now. 

Hang in there, Jill :)

 
Facial Nerve Neuroma removed 6/15/92 by Dr. Charles Mangham, Seattle Ear Clinic. Deaf/left ear, left eye doesn't water.

linnilue

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Re: When others in your life find out, do they leave your life?
« Reply #64 on: April 30, 2007, 07:28:28 pm »
All of this information is so incredibly true about the lack of empathy and/or attention ,to us once diagnsed, treated and then suffer setbacks.  I too have a family that was/is forever not present.  Not one of them did an ounce of research for me(and they are all very well educated), none of them came for or after my radiosurgery.  Not one of my "friends" who live in the same town came.  And my ' best friend" here has never even offered to drive me anywhere, she has never once even offered to come and share a cup of tea.  I guess she really never was my friend.  One thing I have noted though is that cancer is treated much differently and I beleve this is true because there is a diagnosis, a treatment and an end to treatment, which is then celebrated by all family and friends.  I have seen this way too many times.  And I say that because people with brain tumors have many detours in the road to recovery and sometimes the recovery is difficult and incomplete.  People like order and cancer has an order even if the last in order is death.  People love to make dinners, drive kids, do errands, sit in chemo and radiation treatments believing that they are part of a successful treatment pool.  But when it comes to a more chronic type of illness, disease, brain tumor etc. there is not a defining course and people are not comfortable with that, cannot get their arms around it and so do nothing!  I turned 50 the week of my radiosurgery and not one person came to celebrate my birthday.  Oh, they sent flowers but that was like a funeral, sharing a cake would have felt more like a celebration.  I recently asked a "good friend" if she could meet me for coffee once a week and she tole me that maybe I needed a different kind of friend because seh didn't ahve time for that, although she doesn't work and her children are older.  She wasn't really my friend and I had to address the issue and let her go.  I heard that she just made chicken soup this week for a friend of ours who has cancer.  Do you see what I mean?  It is a sad truth.  This being said I want to tell you that my real best friend who doesn't live in my town had a meningioma removed in January and I called her every day for several weeks, sent her cards, pajamas and food.  I wanted her to feel how important she was to me, still is and always will be.  She was my best friend at 12 and at 52 we are still best friends and if she lived in my town she and I would take a cabtogether to have coffee. 
Left AN dx. 11/05 Linac radiosurgery 01/06 Burlington, VT for a 9mm x 5mm tumor.  No necrosis yet (2 yrs. post-op).  Multiple post radiosurgery complications, some permanent.  Have radio-oncologist here.  Now see Dr. McKenna, Mass. Eye & Ear Instit., Boston for flollow-up care as my main An doctor.

ppearl214

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Re: When others in your life find out, do they leave your life?
« Reply #65 on: May 08, 2007, 09:23:48 am »
I commend the ANA in recognizing this as an issue, as they are offering a workshop at the July Symposium dedicated to the Emotional Impact of an AN Diagnosis. I hope the speakers will note this in the discussions and will be interested to hear what they say about dealing with our diagnosis and how others around us deal with it (regardless if positive or negative).

Thank you all so very much for sharing this.  It's good to know that we are not alone when running into this situation... and that we are all here for each other! :)

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

dally1932

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Re: When others in your life find out, do they leave your life?
« Reply #66 on: June 03, 2007, 12:55:57 pm »
I thank you for this thread. If you are working it has got to be a little better than being on disability from surgery. I went back to work for about 8 months and had so many friends and business contacts while working and once I was put on disability, it all changed.  Several long term friends of 20 + years are just now a yearly Christmas card. I have one friend of 36 years who sat with my wife through surgery (drove from Minnesota to Atlanta) and who has been a friend indeed. But until last year when he had a fall and a concussion and was confined to bed rest for two weeks, did he fully appreciate, (if any one can), what we go through. I figured the workforce friends just didn't know what to say after awhile. Today represents my 5 year anniversary since my surgery, and it is a difficult day, as I remember how good it was before to have balance, total hearing, no major head pain or headaches, and be part of a career. No longer.....all gone. The disability insurance company sent me through a FTC (functional capacity test) at the end of February and this Tuesday they have me seeing there "independent" doctor for evaluation. He is not a neurologist, not a pain managment specialist, not a neurosurgeon, no experience with AN, but a pshycotherapist to determine if I suffer from memory loss and cognitive skills, which I feel I do to some degree, especially short term memory loss and some normal skills I had before like retaining what I read. The phone rang the other night and I answered it and had a ten minute conversation. My wife came in from the office and asked  who was on the phone..I told her I honestly could not remember the conversation or who had called. It took me about an hour of serious thinking to remember the conversation. It may be just the medications, hopefully I will find out more on Tuesday. The best to you all, while I don't post often, I read the forum often and feel there is a strong family because of what we or our families have been through with our AN experience.
Left AN Tumor 6/02/02 1.4 X 1.8

okiesandy

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Re: When others in your life find out, do they leave your life?
« Reply #67 on: June 12, 2007, 03:42:20 pm »
I have been following this thread for sometime. My AN was diagnosed in April 2005. For at least a week my co-workers were concerned. I was assured I could have all the time off I wanted to take care of this.
Now, everyone looks at me in a strange mannor if I need to go to the doctor. I haven't had time off for just myself in all of this time. Somehow more is expected of me just to prove I am OK.

My own mother told my cousin I was milking this for all it was worth. This because I didn't have surgery and the "thing" as she calls it is gone,never mind that I also have AIED and will lose all of my hearing at some point.  I have never had a great relationship with my mother. I am an only chld and she needs me now and I just can't bring myself to overlook a lot of the thousand and one hurtful things she has done to me. I find I only have so much engergy and don't give it to people who drain me.

My best friend told me she would alway be there for me. If I ask for anything, like meeting me instead of me picking her up she can't be bothered. Now she is out of work and wants me to help her with her resume. Fat chance. We had a friend who had a heart transplant. This firend saw her 6 times in 2 years and then went to the funeral and hit on the womans husband. I kind of knew she would never be there for me.

A former friend that I had lost contact with found out and has really been there for me. She does not understand the deafness, she does understand the hurt. She even came to my house today to put in a fountain that I had bought.

I have found so many friends on this and the Cyberknfe site that I talk to and call, it is like I hve truly found honest true friends and we have a great bond and a lot of laughts.

I have always been a strong independent person and this is a blow to me. Even my sweet daughter can only admit that she was worried for a short while. She said she knew I would be OK. Great faith on her part I think. I sure didn't know that I would be OK> I read an article in a autoimmune mag. I think it was called "If you look so good why are you sick" all about illness that doesn't show.

I just came from a Home Deppt.. I ask if someone could carry out the pavers and put them in my suv. Everyone walked away. I was so furious I yelled "Brain Tumor here" I do have a ACLU attorney that has nothing to do and is looking for a cause. The manager was called. Poor man!!! I sure vented on him. He carred the pavers to my vehicle and ask if I really intened to pursue this. I just laughed. Let them wonder. There are some really funny things that come out and some hurts also.

I think this thread should be kept alive. It is not all bad, some very good things have come out of my journey. Venting is probably the best thing we can do. Saves the family and the few friends we might have left.

Sandy

Cyberknife 1/2006
Clinton Medbery III & Mary K. Gumerlock
St Anthony's Hospital
Oklahoma City, OK
Name of Tumor: Ivan (may he rest in peace)

ppearl214

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Re: When others in your life find out, do they leave your life?
« Reply #68 on: July 04, 2007, 09:42:18 pm »
well, it seems to have happened again.... 2 that were in my life pre-AN diagnosis.... they find out about my diagnosis and *poof*.  I called them both recently to say hellos.... one actually met me and my best friend for dinner.... one I got on the phone.  Both tell me they think of me often.... both say they will always be there for me..... and again, *poof*... not another word.  I just don't get it.  I read what you all share here and I keep each response in mind while I deal with this.... each is right and there is no wrong answer.  I think I give up trying to find out answers to this question.  I guess it's just time (for me) to "deal" and move on... not that I'm trying to hold onto the past, but to try to understand why folks react this way.....

I just don't get it.
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

GM

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Re: When others in your life find out, do they leave your life?
« Reply #69 on: July 05, 2007, 02:31:24 pm »
Phyl,

I'm sorry that happened to you again...that just sucks.   You are fortunate in that you have dealt with a pretty large medical problem and have come out on top.  Unfortunately, there are people out there that have not yet dealt with such a medical problem.  Maybe they are afraid of they're reaction to it...so avoidance is their defense.  This doesn't make it right.  But, all you can do is try to understand their rudeness. 

Keep being strong, positive, and know that you have a whole web site of people that will never leave you, or let you down.   ;)

Gary 
Originally 1.8cm (left ear)...Swelled to 2.1 cm...and holding after GK treatment (Nov 2003)
Gamma Knife University of Virginia  http://www.medicine.virginia.edu/clinical/departments/neurosurgery/gammaknife/home-page
Note: Riverside Hospital in Newport News Virginia now has GK!!

yardtick

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Re: When others in your life find out, do they leave your life?
« Reply #70 on: July 05, 2007, 05:54:56 pm »
Hi,
I find at work people can very cruel.  I found out I had AN Oct 2006 after surgery.  I still get unbearable headaches and some of my "young" (under 30) co-workers had a gay old time talking about me behind my back after I went home.  I was back to work 2 weeks after I had surgery, for me to go home I was in an extreme amount of pain.  I still need another surgery with a nerve graft.  This is a great support joining this siteand informative!!
Anne Marie (Yardtick)
P.S. Anyone from the Toronto Canada area?
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

Windsong

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Re: When others in your life find out, do they leave your life?
« Reply #71 on: July 05, 2007, 10:30:26 pm »
Hi Anne Marie,

I saw your post and wanted to welcome you. Sorry to hear you have an An. I am near Toronto. Did you have An surgery last year and is this operation you mention now a nerve graft for the facial nerve? I myself had radiation treatment so I can't comment on surgery, but I know there are a few here who had surgery and also a nerve graft later ( Kathleen from To) so maybe they will see your post and answer too. If you haven't had an operation but are about to have it then i apologize. I wasn't sure from your post you see.

wishing you all the best, take care,
Windsong

NF-2er

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Re: When others in your life find out, do they leave your life?
« Reply #72 on: July 06, 2007, 07:07:42 pm »
   She wouldn't stand by me. She wouldn't fulfill her marital vows, BUT, she promises to come to my funeral, has a cemetery plot next to mine and wants to share a marker.
   She will be Power of Attorney, BUT, she will not give up her married man with lots of money and empty rhetoric about her relationship to God and the church.
   My ex wife, hypocrite... God knows and sees.
   NF-2 and it's stressors, emotional, physical, and financial were too much for her to deal with.

   NF-2er

yardtick

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Re: When others in your life find out, do they leave your life?
« Reply #73 on: July 06, 2007, 10:25:50 pm »
Hi Windsong,
I had surgery Fri Sept 6/06.  The ENT went in because he thought my ear drum was bulging.  Had a CT scan done early May and it showed the 3rd bone in my middle ear had thinned.  He wasn't going to operate but I complained about the stabbing pain in my left ear and above the ear that shot across to my eye.  The operation was suppose to be 1hr & 15mins, it was 3hrs & 30 mins long.  I had a huge bruise in the middle of my chest from the facial monitor.  Of course the nurses in recovery had no idea why the surgery was so long.  One was actually nasty to me.  I went home that afternoon on was back in the ENT's office Mon morning.  He found a pulp like substance and it wiped out all the bones in my middle ear and my eardrum.  He has something in there holding it together.  Two weeks later he had the lab results in and I'm told it won't kill me but I have Scwann's.  I had to research the internet to understand what was happening to me.
I had another CT scan early Dec and two MRI's within a week in early Jan.  I was than referred to a neurosurgeon.  This guy blow me away.  He told me I have an Acoustic Neuroma, again it won't kill me, but it has to be removed.  He said a lot to me and I don't remember everything.  I'm seeing him again on Tues.  It was the neurologist who told me more.  The AN is on my facial nerve in a boney tunnel.  At the time after the surgery it was 9mm.  They are concerned about the room in the tunnel.  All of the other cranial nerves run into this tunnel.  I've had so much pain, numbness and fatigue and none of my DR's could explain why.  I'm on tegratol and it has helped, but I still have really bas episodes of pain, numbness and dizziness
After reading most of the threads I now know it is a common complaint amoungst AN people.  I have a list of questions for the neurosurgeon.  I am prepared.  If my husband cannnot get off of work my cousin will be attending the appointment with me.  From what I remember from the first visit he said he wants to remove the facial nerve, graft another and give me a mini face lift.  I was blown away.  I'm 47 but I do not look it.  God gave me great skin, and I've been fighting this old age thing tooth and nail.  I know I'm vain.  I know my health is more important.  I've been thinking about getting a referral to the US.  I live in Ontario Canada.
So that's my story.
Anne Marie
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

Patti UT

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Re: When others in your life find out, do they leave your life?
« Reply #74 on: July 14, 2007, 10:12:06 am »
I've been reading this thread, and find it quite interesting. Thought I'd add my 2 cents. (sorry I have not been active on the forum in quite a while)  I had some of what you are describing happen but quite a bit of the opposite.  I lended up letting go of who I thought was a dear friend because as you all have described, She couldn't/wouldn't deal.  I ended up sending her a letter the week before surgery forgiving her, as I realized she is the type of person who it's always all about her and she clearly didn't have room withion her to be supportive to another because it would remove the drama focus from herself.  Then my in-laws,upon hearing the news, offered to come help with the kids etc after surgery. We accepted their offer and planned that my folks would come the first 3 weeks and they would come for the second 2-3 weeks depending on how I was doing, mainly expecting I would need help with the kids by then.  A few days before my surgery, they announced they had come acroww a great deal on a 28 day Mediteranian cruise and would be leaving the day of my surgery. But suggested after they returned 4 weeks later, and spend a week resting at home and then would need to visit their other grandson, they could come to help by mid November. (my surgery was end of Sept)  My husband and I were so hurt and stunned, and then of course I became very angry, that I told them the crisis would be over by then, so no thanks.  They proceeded to tell the rest of the family they had offered to help us but we refused.  To this day, I do not forgive them for what they did to not so much me, but their son ad grand daughters who were counting on them.
   But the upshot of this is..... The outpouring of support I got from my friends and aquaintences, and even people I didn';t know from the community was incredible.  The days prior to the surgery was a steady flow of well wishers bringing little gifts and hugs of support, After a while It made me feel kind of weird, like they were coming  to say goodby, just in case it may be the last time.  I had a few of my closest friends at my side at the hospital along with my folks, and then after I got home, flowers from everyone the first few days, a few visitors as they didn't know if I was up to visiting yet.  The meals started coming in and my mom asked them to hold off until she had to leave some 3 weeks later.Apparently they had set up a scheduel for meals to be brought.  Once she went home, I had meals delivered every dnight for over a month.  My husband got the kids ready and dropped them off at school every morning, but I had people picking them up everyday and bringing them home so he could geta full days in at work. They have 1/2 days at school on Fridays, so every Friday they were picked up and taken care of the rest of the afternoon. This kind of stuff went on for months.  I later found out that a prayer chain had been set up and I had some 200 people praying at the same time for me and my doctors as I went into surgery.  Thinking about this brings tears to my eyes as it di when it was going on. SO YOU SEE, NOT EVERYONE ABANDONS US.
  But the most incredible supporter was a woman I only kew from seeing her around school. Her daughter was in my daughters class at the time. I had heard she had had a brain tumor some years before. I mentioned to her my diagnosis and inquired about her experience. Turns out she had had 2 craniotomy's 2 AN's (1 was regrowth) and 1 meniginoma. This womderful woman jumped right in as my biggest advocate and supporter.  Some 2 1/2+ yrs later, she and I have never really become "close" friends, we run in different circles of friends, but we always stay in touch every few months or so. I try and chekc in with her as she has many problems from all her surgeries and gets fairly frequent MRI's.  Unfortunately, She called me yesterday with some very bad news.  She has 2 more tumors, opne on each side of her head. She ahs so much scar tissue, they mad go at it with radiation this time, but she is scared of loosing the hearing in her only good ear.  Now it's my turn to be supportive for her.  After going through all this I have found I am much more compassionate to others and find myself reaching out to people with medical issues. I have 3 new friends now who are battling breast cancer. I find we seem to find eachother. while sitting in the dentist chair recently, the  assistant couldn't get the xray thing in my mouth, in explaining I had had brain surgery which cut throught the jaw muscle (middle fosa) I now couldn't open my mouth very wide. She immediately started telling me about her breast cancer, that her hair was a wig etc.  It makes me look back on the how and the why, when I had heard through the grapevine this woman had had tumors, I never asked her how she was or reached out to her. Kind of like us, we look OK, so people just figure we are.
  As someone else said here, I think it's just human nature to shy away from things that are uncomfortable, unless you have been through something like this, then it's easy to see the need for compassion and reach out to others.

Patti UT
2cm Rt side  middle fossa  at University of Utah 9/29/04.
rt side deafness, dry eye, no taste, balance & congintive issues, headaches galore
7/9/09 diganosed with recurrent AN. Translab Jan 13 2010  Happy New Year