ANA Discussion Forum
Post-Treatment => Cognitive/Emotional Issues => Topic started by: MDemisay on February 17, 2012, 03:39:12 pm
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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
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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
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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
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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
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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.
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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
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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
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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
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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.)
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Everybody,
My friend of 40 years called me but I was at my shrink's, oops! How do I explain that?
Any suggestions?
Mike
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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!
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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
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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
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;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
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;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
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I just wrote a long reply to all of you and when I went to post it, it disappeared. I can't stay on the computer for too long because of my neck.
What I said it that it really hurts when people disappear and desert you. My shrink told me that my daughters of tired of my problems I've had ever since they were little girls. Even my husband in the divorce deposition said I had neck problems that he was tired of hearing about. I have Ehlers Danlos Syndrome and so do my daughters and their children. The children are even worse because they have cafe au laid spots on them as does my daughter. What comes with all this is chronic pain and degenerative disc disease. People just are sick of hearing about it. So don't go to them. As Jim said you are going through this process and are discovering who the keepers are. I am having another brain surgery next Friday morning and don't feel good about it. I have to get inside myself and take it. Every surgery makes me worse with the exception of Dr. Ducic who fixed my pain on my head and my laparoscopy. During that laparoscopy, the nurse wouldn't discharge me to my father who was panicking and called my poor daughter out of class in high school....she is now 34 and had her take the bus to Washington to be there to take me home. It wasn't fair to her. She was only 14. I have an illness that needs a lot of care. I also am recovering from an AN and the surgery next week is part of that recovery because I went to Johns Hopkins.
Keep the keepers and drop the rest. Surround yourself with keepers and you'll be better for it. I know AN survivors really understand where you are coming from so they will never disappoint you. It is a long hard road we walk but we don't have to walk it alone.
PM to me and I will give you a call when you need it. We are all here for you.
Hugs,
Mei Mei
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I forgot to add what I had written on the post that disappeared: This is the United States where you are expected to grieve in the official 5 days while in Taiwan, you are given 3 years. Take your time in healing and surround yourself with people that will be there for you. I remember back in the 1960s my father's friend's wife had breast cancer and no one wanted to sit next to her at dinner. The same went for people with AIDS. We've changed for the better over the years and it is my hope that we continue to do so.
I am in the process of writing my new will and my father's and making two Family Trusts. It is painful to know that my daughters are sick of my illness and where should I put my money. With them? I don't know They don't need me as much as I love them. Where should I put my money? With them in spite of their anger about my illnesses? I'm not sure anymore.
It's a bad and painful place to be in.
Mei Mei
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Mei Mei, I would think twice about your trust and what to do when you are making the decision at a time of emotional upheaval. You may feel different when things are less emotional. I think many on here have had issues that their family can only take so much discussion of having the AN. Your situitation is having more than this and have been thru way more than most. Since your family is not the person actually going thru what has been a very painful and up and down time,it could be easy to think they are not thinking of you. Some people can only handle so much. I would not give up on them completely and take each family situitation at the time it happens. Having the care of your father has made it harder too for all you are going thru. This is all my own opinion and you know your family better than me but just try to think of yourself now and the hope of less pain soon. EVen that may make a difference in how you think and handle things. I wish you well and hugs to you. Cheryl R
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Thank you Cheryl and all. Cheryl you too have been through so much. I will hear your advice and take it to heart. In the end, family is all I have. I have to take good care of them in the best way that I can. You are definitely a keeper friend.
Hugs,
Mei Mei
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To all,
I'll tell them that the Gamma Knife treatment achieved the intended goal of killing the tumor(on June 11th)and that I am happy once more 8 days out. That in 99% of the cases 10 to 15 years out my Doctor has not seen a reoccurence. I will have to go for a CT scan yearly to monitor developments and will have to go for these for about 5 years! This is one happy Toastie Postie! Thank you Dr.Sisti.
Mike