Author Topic: What do I tell friends?  (Read 14550 times)

MDemisay

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What do I tell friends?
« on: February 17, 2012, 03:39:12 pm »
Hi All,

Explaining about a disease process is a new subject that deals with my personal health. There are some people that will be able to take it and respond in a kind way, and there are some that will show their true selves. I suppose once I have told people who I thought were close, I will find out where they stand. This process hurts though!

Could you tell me how you handled it? Those that are able to will joke others will take it like it's a death sentence even when I explain that it is benign and not malignant!

Sometimes these things can weed out those people that were hanging on just for the free beer LOL! It could be a good thing too, at least it will enable me to save on my postage at Christmastime!

What do the rest of you think? Perhaps, it is a good thing, perhaps it will bring me closer to my church community!

Mike
« Last Edit: August 23, 2012, 03:08:32 pm by MDemisay »
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

Jim Scott

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Re: What do I tell friends?
« Reply #1 on: February 17, 2012, 05:09:09 pm »
Mike ~

Your observations are astute.  You'll find that some of your friends and acquaintances will not know what to say and might start distancing themselves from you.  Some will be over-concerned and every time you meet will say, with a worried look: "how are you?'  Some will laugh it off and some will simply 'be there' for you.  Those are the keepers.

However, give folks a bit of slack in that most of us, when confronted with a friend who tells us he has a serious medical problem, don't quite know how to respond, beyond "I'm sorry".  How you explain your AN and what treatment is going to entail is crucial.  People will take their cue from your attitude.  If you're nervous and obviously worried, they will be too.  If you're casual and optimistic, they'll likely reflect that attitude.  You have a lot of influence in this situation. 

One more thing to remember: most people have their fair share of worries and problems, be it medical, financial, or emotional.  They will be willing to sympathize with you but only so far.  Their personal problems, spoken or not, will always trump their concern for your problem.  That is a reality we may not like to consider but we must.  I trust that your circle will be caring and supportive as you tell them about your AN but whatever happens, know that you will always find understanding, empathetic friends, here.  :) 

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

MDemisay

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Re: What do I tell friends?
« Reply #2 on: February 17, 2012, 11:12:28 pm »
Jim,
 
Thank you this is hard :( but thank you for offering your friendship. It is hard to tell who your real friends are sometimes but I suppose that it will separate the people with integrity from people with other intentions. There are many people here that are open to new experiences like this time that has brought all of here to this forum seeking answers to this complex problem of helping each other deal with different crises.

Jim, once I am finished with this difficult process of choosing the mode of treatment and method of radiation, doctor, and the place where I am going to be treated, can I come back here and volunteer? I feel I could do some good!


Mike
« Last Edit: August 23, 2012, 03:08:50 pm by MDemisay »
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

ppearl214

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Re: What do I tell friends?
« Reply #3 on: February 18, 2012, 07:04:18 am »
Jim, once I am finished with this difficult process of choosing the mode of treatment and method of radiation, doctor, and the place where I am going to be treated, can I come back here and volunteer? I feel I could do some good!


Mike

Hi Mike
Been following along and sorry things have not been all that great recently but glad to see you are taking steps for your wellness. Hang in there!

I believe I have already shared with you the necessary steps for volunteering for the ANA (shared in email/PM).  That would be the process that I noted in email. I commend you for wanting to step up to the plate to help others.  Even if not an "official" volunteer through the ANA, what you do and share here is the "unofficial" volunteering as you are giving of your time, energy, thoughts, experiences.... all with the goal of obtaining info/support for yourself... but also for others :)  Remember, others read what you write here, so what you offer/write does help others :)

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

ombrerose4

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Re: What do I tell friends?
« Reply #4 on: February 19, 2012, 06:50:32 pm »
Mike,

As Phyl said, just sharing what you are going through is a help to others who are going through the same thing. This forum is a sanctuary for those of us with AN's - we complain together, laugh together, cry together, share stories and info, and most important we listen to each other:)

Choosing the type of treatment you are going to have is THE hardest part of this AN journey. Gather your info and trust your judgement.
Retrosigmoid 9/24/09
AN 2.4+ cm left side
Mount Sinai Hospital, NYC (Dr. Bederson and Dr. Choe)
BAHA surgery 1/4/2010

MDemisay

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Re: What do I tell friends?
« Reply #5 on: February 22, 2012, 11:01:22 am »
To all of my involved friends( those of you here),

 ;D I have resolved with myself and with my friends my continuing struggle. I am most grateful to those leaders here who have stepped up and encouraged me to go forward. I am most grateful to you, for a long while I was paralyzed with fear. I am no longer!

It is up to us to be proactive in our lives, no one will step up for us, we are all individuals here it is up to us to make wise choices and when confused to ask for help. I hope that you value this forum as much as I do. Over the weeks, it has allowed me to stop question, and plan to move forward, then proceed valiantly!

Mike
« Last Edit: August 23, 2012, 03:09:11 pm by MDemisay »
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

Chances3

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Re: What do I tell friends?
« Reply #6 on: February 22, 2012, 12:18:10 pm »
Hi Mike,

I have found this forum of enormous value.  Not just for the info, but for the support. 

In reference to friends, my illness taught me a lot about people.  The out pouring of cards, flowers, fruit baskets and phone calls from friends, relatives and coworkers the many weeks after my operation made a huge difference in my psychologically recovery.  People I didn't expect anything from surprised me, and people I expected from dissappointed me.  But there was one painful hurt, my best friend just dropped the ball.  I was stunned, no phone calls, no cards, didn't even think of stopping by to see me.  We've been good friends for over 30 years !  His wife called my wife to get "updates", that's as far as the caring went. 

After many months, I came to the conclusion that I over estimated the relationship.  I told my wife he was now "downgraded" to just a neighbor and servered any relationship beyond a hello.  I was mortally wounded by the lack of interest in my health and recovery.  I have moved on, and the other friends that showed me all the love and compassion are in my inner circle. 

Well that's my rant for the day, you touched on a nerve, and I am sure there will be plenty of replies to your post.  Stay strong, stay positive, stay well.

Bob

MDemisay

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Re: What do I tell friends?
« Reply #7 on: February 23, 2012, 11:24:02 pm »
Bob,

Wise words! I am sorry it didn't work out for you even after all that time, perhaps, he'll come around again and you'll pick up again. Give it time, perhaps there is something else between you?  Time heals wounds.....If it was truly a friendship that lasted so long, isn't it worth another shot? I myself will allow time to pass before picking up with an old friend again but we have been through so much together. I owe it to myself to pick up with my best friend again!

Jeez, we were kids together! I can't abandon a 40 year friendship! Just because of some misperceived (on my part?) squeamishness!

Mike

« Last Edit: August 23, 2012, 03:09:31 pm by MDemisay »
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

dragonmama

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Re: What do I tell friends?
« Reply #8 on: February 24, 2012, 06:42:11 am »
Mike and Bob - my best friend (will be 33 years this fall), has just not been there for me either. Her initial reaction was to cry, when I told her, but since then, she has not responded to emails when I need to talk about my AN or how I'm thinking or feeling about it, and for many months she wasn't answering the phone.

It was when she called to tell me she has a new boyfriend (she's been a single mom for 7 years since her ex left her), that I realized how deeply scared she must be. We've both leaned on each other in hard times and shared good times for so long - especially since her mother died 24 years ago - and this is really the first situation where I leaned and she wasn't there to catch me. Next thing I know, she's found someone new to lean on.

I could take this as betrayal, but instead it made me realize just how much I must mean to her. She's obviously so scared she's going to lose me that she's taking steps to build herself a new support network now. And with this new boyfriend at her back, she has, very tentatively, asked about my AN and really focused and listened to what I said.

It is the first thing in our friendship that is so big that she needs support in order to support me, and as soon as I understood that, I forgave her.

The months where she didn't call or answer emails or calls were very hard for me, because I was deeply hurt, but I did not want to hold it against her - I wanted to find something redeeming about it - because it was so out of character for her. I can tell from her body language and tone of voice that she feels really guilty and awful - that she knows she failed me. I'm pretty sure that would be an incredibly difficult apology to put into words, so I'm not expecting that out of her, I'm just picking up our friendship where we left off. Where it comes to my AN, I'm talking about it just like Jim suggests - sharing my own (hard won) optimistic attitude and going light on details.

Bob - my dad had open heart surgery about 1.5 years ago, and it was shocking how many people did NOT visit him in the hospital (grrr - *I'm* still mad about that because I was the only one of his children who visited and none of his siblings visited either), and yet they all wanted updates. I think a lot of people are absolutely terrified of hospitals. (Heck, my hubby is terrified of hospitals, and from experiences like birthing our children, I know HE is going to need a support network if my AN requires surgery - just to help him with visiting me at the hospital. I don't know if he can handle that first recovery day in ICU at all, since he has so much trouble with regular wards.)
Left SSD since 2010
Diagnosed 7/2011
Retrosigmoid 21 June, 2013
AN 2 cm
Left side palsy from stretched 7th nerve
Chronic neck pain, muscle spasms, headaches

MDemisay

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Re: What do I tell friends?
« Reply #9 on: March 02, 2012, 01:59:11 pm »
Everybody,

My friend of 40 years called me but I was at my shrink's, oops! How do I explain that?

Any suggestions?

Mike
« Last Edit: August 23, 2012, 03:09:52 pm by MDemisay »
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

patbiedermann

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Re: What do I tell friends?
« Reply #10 on: March 05, 2012, 06:04:23 pm »
I found the same thing....friends and family were great the first few weeks.  People i thought I would hear from never called.  If it wasn't for My husband's Aunt and him, I don't know what I would have done.  They were always available to take me to therapy twice a week.  When I first told my sister in law, she said she would be there.  When I called her to take me to therapy, on two occasions, she was busy.  Her and her husband have come to see me twice since all of this.  It has really hurt because I thought we were really friends.  I made a point of telling family and friends myself.  I got different reactions from them.  My brothers and sisters were very good.  Although my sister was fighting a losing battle with lung cancer..we lost her in November.  I know they were not telling me how bad she was because of what I was dealing with. I have found this site more supportive and informative.  Just reading what others are feeling and going through, or how they have dealt with different topics is so helpful.  Thanks from the bottom of my heart!
Translabyrinthine removal on 6/13/11 for a 3-4 cm cerebellopontine angle tumor (vestibular schwannoma) at University Hospital in Syracuse, NY by Dr. Deshaies and Dr. Woods.  10 1/2  hour surgery.  Got 90-95% of tumor. Hospital stay for 10 days. Inpatient Rehab for 7 days.  doing pretty well.

Kathleen_Mc

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Re: What do I tell friends?
« Reply #11 on: March 06, 2012, 08:05:13 am »
Serious illness of a friend/family member/co-worker can either bring out the best or the worst in some. I too lost many people I thought were good friends and in particular a boyfriend. I have come to realise it was not me that was the issue but them, my being so ill  may have brought out their own fears of health crisis/death, maybe they just didn't know how to help and shy'd away. I no longer care, a friend in need is a friend in deed and there isn't an excuse for not being there for a true friend in such a situation.
 I did more or less end friendships with some in that I just never reached out to them again so I did not ever find out "why" however I recently reconnected with my boyfriend at the time......without my even asking he volunteered that what "happened to us" was that HE was unable to handle my being critically ill, of facing the hurt of seeing me ill, of not knowing "what to do or say" and not realising there was nothing to say.....just be there by my side and stumble along through recovery (no pun intended) etc. He apologised and that meant the world to me, not that we will continue a friendship in any manner I guess I just needed to hear that.

Try not to worry about "what happened to...." and make a mental note of who your true friends are and carry on, don't carry anger but don't forget they didn't stand by you when it counted this time and likely won't if something bad were to happen again, for whatever reason.

I am sure you will find other's who who thought didn't care so much are there for you, and those who truely count.
Take care, Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

jaylogs

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Re: What do I tell friends?
« Reply #12 on: March 06, 2012, 09:54:00 am »
Having these kinds of issues is always a dicey thing to handle...From the very start, you are trying to figure out what to do, but also how to handle your family and friends. You ask if you should only keep it from everyone but those close to you, or do you broadcast it out there.  Then, once you go through the whole thing, you notice things just aren't the same for yourself. I know I have changed through all this, both physically AND mentally.  Not to the point of life altering, but I have had to deal with things I know I wouldn't normally have to deal with.  So as everyone here has already mentioned, you'll find who your true friends are...KEEP THEM!  I hope things go good for you, and you have a sense of peace about it all.  You do have enough on your plate to deal with! Take care and let us know how it goes!
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

MDemisay

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Re: What do I tell friends?
« Reply #13 on: March 08, 2012, 12:56:33 am »
 ;D To all of my friends who are also going through this,

I have found one thing true throughout all this that our shared situation brings out a fear in people the fear that one day they will die (even though we are not going to) it brings the ugly realization that life is precious!

So don't waste it, find out who will not run the other way, and stick with them, find out who is comfortable praying(if you are comfortable with that) and who would rather just sit quietly and reflect with you. You'd be amazed at who will!

Good Heavens, look how late it is! Goodnight!


Mike
« Last Edit: August 23, 2012, 03:10:47 pm by MDemisay »
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

MDemisay

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Re: What do I tell friends?
« Reply #14 on: March 08, 2012, 09:03:28 pm »
 ;D Good News !my friend of 40 years finally contacted me and we talked about "Irv" the tumor and other things that bothered me the talk didn't get religious (I am), he is agnostic and doesn't believe. When I asked him about acupuncturists because he believes in that and he was able to provide that!

We have been friends ever since 7th grade!

Isn't that great, I was depressed for a long time, and we finally got together and talked things out!

So don' t give up hope on your long term friendships, you may find it hard to bear at first that your friend doesn't come around at first but if you keep on trying, your bound to find a way that they can be helpful to you during your hour of need!

Just keep on plugging!

I am so relieved!

Mike
« Last Edit: August 23, 2012, 03:11:00 pm by MDemisay »
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!