ANA Discussion Forum
Post-Treatment => Cognitive/Emotional Issues => Topic started by: Joseph on March 04, 2009, 08:38:38 pm
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I know I'm having a nightmare...A well detailed, specific, painful, unrelenting, and physically exhausting nightmare. I WANT TO WAKE UP!!!
And when I awake my face will be normal and none of this will have happenend; and if I'm not dreaming, when I go to sleep and I dream away my nightmarish reality, I never want to wake up again...
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Joseph,
I think many of us (definitely me!) have similar thoughts. Especially in the morning, before I'm fully awake and various levels of pain and discomfort set in, I feel "normal". Then I wake up and reality smacks me. Where exactly are you in this process? Tell us the details.
Best,
Marci
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Well Marci thanks for asking.
I am new to this discussion forum and spend most of my days very angry now as I imagine most everyone else here feels the same. I find it very difficult to talk about and my girlfriend would rather not discuss it at all. Last april I began waking everymorning to regular headaches. At first I assumed the headaches may have been from something else like dehydration or a large variety of other reasons. About a decade ago I served in the USN and lost hearing in my left ear as a result from audiologists I saw as noise pollution. Turns out years later this was not noise related but rather the initial sign of what became a very large brain tumor.
According to the ENT and other brain surgeons the tumor was so large it was pressing on my brain stem so much it caused a shift in many parts in my head. They told me if I didn't get emergency surgery to relieve the pressure build up I would not live much longer. Reluctantly I agreed and underwent two seperate open head surgeries last summer. Swelling became an issue for me both times and the second surgery required removal of abdominal tissue to stop cerebral spinal fluid leaking.
Healing from the second surgery was bad I was in so much pain and the surgery site bursted open a few weeks after, and I had to return to the hospital. I was also left with a blood clot in my neck and poor circulation through nerves in my neck. My face still lacks movement and the tumor is not all gone suggestions are being made now to the remaining treatment. Some are saying surgery others say radiation, I am still in shock...
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Joseph ~
Thanks for posting. If you need to vent, this is the place to do it. Many of us have 'been there' in one way or another.
I'm sorry to learn of your troubles stemming from (what I assume was ) a huge acoustic neuroma. Two skull surgeries are no fun, neither are CSF leaks, facial paralysis or the blood clots you've had to endure. A very rocky road to travel and good reason to characterize your experience as a 'nightmare'. I would hope that, with all you've been through, non-invasive radiation can be used to kill the remaining tumor. I truly hope your AN-related troubles are almost behind you. If you have any questions or need more support, feel free to post and ask. We'll be here for you. :)
Jim
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Dear Joseph, I am so terribly sorry that your AN had so many years to grow and become life-threatening. :'( These AN's are so strange, because one person may have so many problems that leads to diagnosis when the tumor is so small, and other's don't have much trouble until the darn thing is huge. Doesn't seem like that could happen, given that the area in which these things grow and thrive isn't that big of a space. But, that's just the way it is sometimes. I wish I had some words of comfort for you. I have spent many a night in bed, thinking about why in the world would something like this happen to me, and how in the world am I going to learn to live with the many symptoms that will accompany me the rest of my life. But, my symptoms don't come anywhere near what you are experiencing, so I know I am very fortunate. Fortunate, but, still, having to learn to adjust to a new "normal". I can't even comprehend what you have gone through. But, truly, you were on the edge of a greater disaster than most of us, and you were literally brought back from the brink of a tragic ending. Hard to be grateful when the cure entails pain and misery. I can only suggest that counseling might help you deal with the anger issues and help you along the road to acceptance. The five phases that we go through on any life changing event are: Denial, Anger, Bargaining, Depression and Acceptance. You've got the first two down pretty good! ;) I think I finally reached Acceptance, but I do revisit Anger now and then, so I know how easy it is to get stuck there. I am afraid that you are slipping into Depression and by-passing Bargaining altogether. Of course your sleep comments might be Bargaining: "If I just sleep a lot, maybe it will go away." But I am worried you might find yourself deep into Depression and not get out of that one. Serious bottom of the barrel Depression really would need the help of counseling and maybe some meds to help you. You might also consider alternative medicine - acupuncture, meditation, yoga, etc -- as a secondary help for you. Of course, you will need something stronger to finally kill the darn thing as holistic medicine can only do so much, but you get my drift, I think.
I truly hope that things get better for you. I was so saddened by your post. :( Do NOT let this control your life. Find the doctors that can help you with the symptoms. Fight for your health.
Take care,
Sue in Vancouver, USA
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Hi Joseph: WHEW ! You HAVE BEEN THROUGH IT ! ! I'm so sorry to hear about the complications - like the usual expected post op symptoms aren't enough. Exactly how long ago was your surgery ? - is it April '08 ? I'm hoping the facial paralysis will improve, & you won't need further surgery for this. There are several of us here with permanent facial paralysis so down the road if necessary we can help, but let's hope your nerve is just sleeping & hasn't woken up yet.
I am sure you are in shock, who wouldn't be ? I agree with Jim re: radiation to get the remaining tumor.
Hang in there, we're all here for you, Nancy
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Thank you all so much with the wonderful advice and comments. I attempted to post my picture on my profile so all can see me and just how I look. I value all of your words of inspiration and hope. I need all the friends I can get...
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Sorry you have been through so much ...
It is OK to get mad ... trick is learning not to get stuck there in Madville ... I visit the place and it gets
me down ...have learned to pick myself up and move on with help from people here...
come vent away ... that is also good for you ...getting your feelings out to people who understand ... my
husband is great most of the time but then others times he is like ...OK it has been 20 months and this should
be over not really understanding alot of the issues I now have will never be over ...then he goes back to
the nice understanding guy I love ..
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Hi Joseph,
Sorry you've had so much trouble. It can be a long road - I remember what it's like waking up feeling normal. Then having to untape my eye, use drops all day long, food and drink dribbling out my mouth, and dealing with the aspect of not looking like normal. Remember to celebrate every move forward, no matter how small. Also remember that you ARE still here with us, and that's good too!
I wouldn't have chosen to get on this particular boat ride, but am happy for the companions found here.
Best wishes,
Tamara
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I wouldn't have chosen to get on this particular boat ride, but am happy for the companions found here.
Joseph,
Hi and wellcome to this forum. I'm sure you'll find many people here who can relate to your experience, you've certainly been through the wringer! I hope you and your docs decide soon on a course of treatment for the remaining portion of your AN. Whether you choose surgery yet again, or radiation, I hope it is the last course of traetment you will need.
My husband was s ilently flipping out after my diagnosis and shut me out in his efforts to not influence my decision, which after all was mine to make, and trying not to make me more scared than I already was. I wish he would have talked to me, because like you, I felt abandoned. Let your girlfriend know how you are feeling, I'm sure she will be there for you.
Sending healing thoughts your way,
Wendy
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Joseph:
Welcome! You've been through so much. For me this discussion forum has been a great source of comfort. Family and co-workers have been wonderful, but I try not to alienating them by speaking about me and my AN too much. But the folks here are always willing to "listen" and offer support. So I suggest you hang around with this crowd. I can't imagine having gone through this experience without the AN discussion forum.
I'll be sending good thoughts your way. Hang in there.
Syl
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Hi Joseph,
I hope some of the things you must face are going a little better for you these last few days.
I agree with others that you need to treat each small improvement and each small step as important. Celebrate each one! Also, if you and your girlfriend haven't had that heart-to-heart talk, it really is time to sit down and do that. Not knowing your/her age or either of your personalities, it is hard to know if she is just scared to discuss these important issues, or if she is scared for YOU to discuss them with her. ??? I'm sure she has seen your anger about your predicament....Not to get down on you for your anger, but it might be hard for her to know how to approach the topic. Just something for you to think about. :-\
Another topic I feel strongly about is your physicians. If you do not have a good, secure, trusting relationship with them, perhaps it is time for you to find a different group of doctors, even though you've already had two major surgeries. I assume that you have searched online for various medical facilities; if not, doing that could help. House Institute in Los Angeles is excellent, and perhaps they or another insitute could review your records and help you further.
One small sideline: When I had my AN surgery, they took some abdominal tissue, too, but it was just to fill in the gap where the tumor had been. Could this have been what your physicians were conveying? Just a thought.
Joseph, I wish you the best in your trying times. Do remember that you are cared about. Please let us hear from you some more.
God bless,
Kathy
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I am so glad you found this site so you can get support from some great people.
Grace
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hey joseph, i understand completely where you are coming from. i have been out of my surgery for 4 years and am still stuck in the angry/depression seesaw. i i have some sort of refusal to accept that i must live with such a poor quality of life. those doctors painted a picture of the best case scenario and it turned out to be the worst. or hearing your story maybe the second worse! and yeah they use your belly fat to stuff up the hole they leave in your head.(they dont even take it all out!habut you have another nice scar) which approach did you have? and how long was your surgery? did you spring the leak second day? im glad you found this forum. there is so much good advice from folks on here and its a great place to vent which always makes you feel a little better. its nice to know that there are folks who understand. my husband, children and friends still dont get it and i suspect they never will. i dont mean to sound so negative but as someone aluded to before its like the stages of death and i think we get stuck in them maybe even for a long time...people will always tell you well youre alive... esp. docs but youre the one who has to learn to live with the tangled wires in your head which will always cause so many issues. i try hard to make strategies to deal but cant say im there in the acceptance stage yet. who knows maybe ill never get there. i have sought some alternative stuff which helps out and continue to seek doc after doc (now that i have medicare ha disability makes you wait 2 years!)(but thats another story) if you can check out chiropractic, biocranial, massage therapy and lymphatic drainage, also a physiatrist. i also see a psychiatrist for my anger and depression but not a counsellor . saw a couple of them and it cant work because they can only go so far unless they could be an an patient they dont get it either. im sorry that you have joined this hellacious nightmare but you arent alone. perhaps if we all pinch each other well wake up! stay strong.
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Joseph:
I'm with you "pinch me and if I don't wake up; I don't want to wake up". I think I'm having one of those days today. I miss my old life so much; being able to hear, not having the wonky head, having my balance, being able to work in my flowers without stumbling all over the place, enjoying the beach sounds and walking in the sand, etc. I told my husband today that I miss doing what I want to do. He asked me what I wanted to do now and I said "just die".
Linda in WV
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Linda -
I'm so sorry to hear you are having a bad day :'(
Hope things are brighter tomorrow :-*
Jan
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Dear Joseph, Linda, klangel,
Oh, gosh! I guess I am Pollyanna.....!
I absolutely hate how bad some of you are feeling...not wanting to wake up...wishing to die... :'(
Maybe my AN experiences were not as bad as many. But...When I look around & outside of myself, I see so many things worse than an AN, & I am truly grateful for having had an AN rather than so many other things. And I think, "Whom would I wish my AN upon?" And I honestly can say, no one else. No one.
A man I have known most of my life died last fall of a malignant brain tumor.....would his widow have chosen an AN for him instead of what he had? Most assuredly so.
Would the person with terminal cancer trade his diagnosis for an AN? The one with leukemia? What about the veteran returning with no legs? My friend who was diagnosed with Lou Gehrigs's disease a year ago, who can no longer speak? Would an AN be worse than the cross that she is bearing? I truly don't believe so....
Is the ringing in my AN ear bothersome at times? Oh, yes. Am I off balance at times? Yes. But I can walk, I can hear, I can even tune out the ringing when engrossed in something interesting.
Was having an AN scary? You betcha'! Would I have chosen to have one? Hardly! But having one has made me stronger, more compassionate, and more grateful for the things that truly count. Am I the same as before my diagnosis and surgery? No. But I hope I am better...I feel better...inside, where it counts.
I truly don't mean to come down hard on you, and my prayer is that you do have better days, that you do come to accept your AN as just one of those things....one of those things that you can accept and overcome...and finally, actually receive grace from.
Praying for good days for you,
Kathy
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Its very sad to hear when people are feeling so bad. Please don`t give up! Please at least try to fight back! I know that can be easier said than done but its worth a try. I`m fighting back (presently W+W). I have completly changed my lifestyle doing resarch on nutrition and whatever possible to make me feel better. Exercise, long walks, no coffree replace by herbal teas, supplements of all kinds (research). Start a routine and remember that everything takes time. It Can`t Hurt! It has helped me with my life and symptoms no change in tumor migranes all but gone tinnitus manageable. I forgort one thing Prayer! Which I`l be doing for all hoping you`ll be feeling better, Mickey
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Joseph,
Hang in there. It seems to be part of the roller coaster ride. I experience either facial pain or headaches every day since I woke up from my surgery Sept 8/06. Dealing with pain issues isn't easy. It has taken a toll on every aspic of my life. Know that you are not alone and it is OKAY to have a pity party. That's what we are here for.
We have all experienced having a friend or relative battling cancer. Some do not make it. This time last year my son lost a very dear friend two days before his 18th birthday. I would have traded places with Amanda in a heart beat, but that was God's plan for her and this is mine. Living with chronic pain isn't easy, nor is watching someone loose their battle with cancer. I may feel sorry for myself some days, and ask why me? I just know tomorrow is another day and I hope it will be a better day than today.
One of my best girlfriends is battling lung cancer. I hope the chemo knocks the cancer into remission. Her outlook is a little bit of hell for more years of life. I agree with her outlook. No one really wish anyone to have an illness. I believe no one has a right to comment unless they have walked a mile in someone shoes.
Anne Marie
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I really don't like it when my husband or friends/family says........Well you could be a quadraplegic or you could be................yadayadayada. Well. Yes I guess I could be then life would be even more difficult than it is right now. Thank God that is not the case but it still doesn't make this dry eye that doesn't close feel any better and it doesn't keep me from running into walls from lack of balance (Surgery gave me secondary endolymphatic hydrops disease which affects balance) and it doesn't take away the facial tightness and spasms. It doesn't take away the headaches or the incision pain that has never gone away. It doesn't keep me from choking on my food or liquids due to my swallowing nerve being paralyzed after surgery and a feeding tube down my nose for a month. I could go on and on but I won't because I think I've made my point. What I want to say is that whatever your situation is.....if YOU are the one dealing with it then YOU have every right to voice a complaint and definately have every right to a pity party or a bad day or several. Whatever makes you feel better and whatever helps you to cope then so be it. BUT as I have learned and must remind myself is that although I am dealing with alot I have to find things in my life that I do enjoy and focus on that. When I am feeling very down then I HAVE to get outside and get some sunshine, exercise. Take my kids to the park and surround myself with laughing children who don't have a care in the world. I have found my coping mechanisms and you must find yours whether it be i.e. meditation, religion, exercise, gardening, etc. Complain ALL YOU WANT!!!!!!!!!! We will listen, we understand and we won't say.........well, it could be much worse. Because for you maybe it couldn't be much worse. I don't know how you feel every day. Maybe you do feel worse than someone dying of cancer. Emotional pain can sometimes take a harder toll on you than physical pain. And a combination of the two can be disastrous. What I do hope for those of you going through a tough time is to find your coping mechanism like I said. I read alot of self help books and daily devotionals which are religion based. I also stay busy with my kids. It is truly amazing how if I can divert my attention away from my aches and pains then I don't seem to notice them as much.
Yes I am thankful that I can see, hear, walk and that I haven't been given 6 months to live. Just because I complain about my problems doesn't mean that I am not thankful for the good things in my life. It is just another way to cope.
May God Bless you and may you find peace and comfort in whatever way works for you,
Angie
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Well said, Angie. This is exactly the place where we can let it all hang out. I, too, hope that those who are desperately unhappy can tie a knot in their rope and hang on for dear life until something comes by that will give them a ray of hope. a window to the world outside of their pain.
Priscilla
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Joseph,
I'm really glad you started this conversation. To one extent or another, we have all experienced loss of capacity we had before the AN. I don't know about you, but sometimes I just get plain tired of being a good sport about it. I'm only 1 month post-op but had been feeling lousy for almost a year before surgery. It gets old. And I'm among the lucky few who kept most of their hearing, had no facial paralysis, and no complications. Amazing, huh? But I can't walk without thinking about every step. The worst thing is that I don't feel safe around my horses,and they are my sanity. My balance is bad enough that I can't think about riding yet, and I wonder if I ever will be able to regain the ability to ride well. I have Spanish horses, hot-bloods, that are not strolling around horses. But they represent a physical and mental challenge that I need at my age (63) to keep life rich.
I'm sure we all have things that feel like great losses that might not look that way to other people.
You have a lot of courage, Joseph. I'm sorry for all of the miserable things you are experiencing.
Steph
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I'm so sorry to hear about your pain, Joseph. And I"m also glad this conversation was started. I've had an up and down time since my CK in January, but emotionally I've been pretty good. Today is the first day I've shed some tears about my hearing issues since my diagnosis in October. I was going to stop by and ask if it's normal to be fine, then just be angry and so terribly sad about the loss. Plus, do you find yourselves just irritable to be around and angrier than normal sometimes? I just got back from springbreak and it didn't help. I'm just in a really bad mood today. I'm tired of the distortion and tinnitus and worrying constantly if I will loss my hearing. I'm tired of saying "what?" and tired of worrying how annoying it must be to DH to have to speak up and/or repeat things. (even though he has NEVER let me to believe he is annoyed).
I'm tired of hearing the "roar" in restaurants and other places. I just miss my hearing.
I do count my blessings that I still have and that is what has gotten me thru the past 5 months with a relatively good outlook and mood throughout this ordeal. But today I'm having my first pity party, real pity party and didn't know where else to turn.
Tisha
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wow! you hit the nail on the head with that ! its both amazingly comforting and yet sad to me that all of you are experiencing the anger and personal sense of torment and loss that i am. i would never wish this thing on even my worst enemy. im nearing 4 years out of surgery and am just now realizing that i will have to be this awful way for the rest of my life. i am soooo tired of saying what and not knowing where someone is calling me from! i miss going to malls movies and most of all concerts. (cant go cuz of the noise)im sick of facial pain headaches walkers and canes. im plain sick of doctors who all pat you on the wrist and say cant help ya. but what really makes me the most sick and tired is feeling useless and un fun, of feeling real angry that my face is now permenantly distorted and five of my teeth are gone.and that cranial neve damage can not be fixed(at least in this century) so since i want desparately to love my life again i started a new plan of attack... i am seeking a solution to each singular symptom... i took the advice from a whole bunch of you on this forum i now get botox injections for the face pain and yay it is working. just some minor adjustment the next time but no more twitching and clenching! and my phisiatrist is great! i go weekly to chiropractic and biocranial treatments also massage therapy and lymphatic drainage. it helps tremendously and im even learnig lymphatic dranage and some reflexology from my therapist! i will be going to a thirdeye doc to discuss having the laser surgery on my eye to fix the corneal erosion and that will be a fabulous qol improvement. feeling like i am being poked contiuously in the eye hasnt made me all that nice.so basically the point i am getting at i guess is chances are that we will all be this way probably forever. i wish i had known from the beginning but i didnt so now ill just have to work on each horrible thing and take one day at a time. some days i will have a pity party because i lost the me that was me and no one understands but i refuse to go lay under the back tire of bus. that would just be too easy. like the docs say "it is what it is. you are still alive" and although thats not the answer i want it is still the answer so i gotta deal. i suppose ive been pinched and am now awake. ha. thanx guys! love, kerri
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kerri,
thank you SO very much for sharing this! Like you, I deal with many medical issues.... and all the dr appts, all the "possible" treatments, all the "well, I've done what I can but maybe another dr has a better solution...."..... I love your spirit! I love the fact you are taking things one step/issue at a time. I learned that many years ago when I first took sick (non-AN) and I tried to attack things from all sides at once.. .and all it did was wear me down emotionally/physically/financially.
Many here know my mantra... "day by day, inch by inch..." as that is the way I have attacked what ails me (and still does to this day). Sending LOTS of mental energy/strength your way (and to anyone that needs it).... as I am a firm believer that when we all stand together, in numbers, we prevail.
Hang in there all! And thank you for sharing all you have!
Phyl
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Many here know my mantra... "day by day, inch by inch..." as that is the way I have attacked what ails me (and still does to this day).
Definitely excellent advice. Take it slowly - and even though it's hard, have patience. Things WILL get better ;D
Jan
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Reading the posts on this vibrant thread is a stark reminder of what some AN patients have to endure on a daily basis and how hard that can be, over time. The physical and emotional challenges are enormous and for some, can be a very difficult reality to deal with 24/7. These folks have an absolute right to be angry, frustrated, sad and even despondent at least some of the time. Who wouldn't? That the majority manage to get through their bad days and do so with tears, anger or just an attitude of grim determination is beyond inspiring. I could name many who fall into this category but I fear that I might leave someone out and I wouldn't want to offend anyone who is struggling, but you folks certainly know who you are. If this website and these forums can make your battle a bit easier in any way, I'm immensely gratified and I have no doubt that the entire ANA organization would agree with me on that. From the ANA's founder to the current president, board of directors and the folks who oversee the website, including Director Judy Vitucci and the moderators, we're all here to serve AN patients. That some of you free free to share your bad days as well as your joys is welcome and appreciated as it validates the purposes of these forums. Thank you - and may you all have better days ahead.
Jim
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I wish I would have said all that, Jim.
Some wonderful points.
Jan