ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: mbnolde on December 03, 2007, 08:41:54 pm
-
Has anyone felt this way? I am newly diagnosed and still gathering information, dealing with the reality that something is growing inside my head, that I will eventually have to have surgery of some kind, that there will be side effects, that I will have a long recovery, that this is a Brain Tumor.....and someone is talking to me about something so trivial that it is inane.....like who said what to whom....or whatever. And I am thinking...."I have a brain tumor growing inside my head...so what about your problem". Sigh. How do you get a grip on these feelings?
MB
-
The feelings you are experiencing are all relative to the diagnosis "you have a brain tumor". Time and educating oneself on the tumor will help ease some of the anxiety, but it is still happening to your body and no one will understand except the people who are experiencing the same diagnosis. I found this site almost 2 years after my diagnosis and the support here is wonderful. Some of the members have gone through alot and have had much larger tumors. If anything I found validation, Some days my head hurts and my face droops. Then other days I'm doing ok. I still have alot of unanswered questions. Welcome to the forum and keep us posted . You are not alone in this battle. Helen
-
There was a book published recently (quite witty)
"I have a Brain Tumour - whats your excuse..."
sound a bit familiar ?
Best Regards
ps your amongst friends here
check/search out the "need to rant thread"
-
Dear Mbnolde,
Helen is right, I strongly agree as you.
Through my experiences friends and family really don't realize what we are experiencing until they see one or more of the symptoms and they have to help you. Or they have to experience it themselves. My boss of a job that I only worked on Fridays for 6 years had never seen none of my symptoms until this year and he was shocked. So he really modified my job just to answering the phones , I really felt incompetent. He only kept me on the job because I was a friend.
Also a very close girlfriend kind of shrugged my problems to depression ,or I need to walk, go to concerts, I couldn't handle the loud music it hurt my eardrums. She even slowed down seeing me after surgery. Now she has found out she has a cist in her petulatary?? the gland in front of your brain so now she sympathies.
eve
-
Hi MB...
I am in total empathy with your situation...it is something that all newly diagnosed 'ANers' have to come to terms with and you will in due course.
We all have our own way of coping with the situation but a tried and tested plan (it has worked for me) is to first and formost undertake maximum research into all aspects of your medical condition including the pros and cons of all available treatment options. Next obtain the services of a neuro consultant who specialises in the treatment of ANs and in whom you have total confidence albeit the final decision on treatment rests with yourself.
I note from your previous posts that you are LUCKY! in that your AN is relativley small and that you are presently in the 'wait and watch' mode. I have been in that mode for almost 6 years and intend to continue until such time that treatment intervention may be required when I will then opt for GK as, in my circumstances, I consider microsurgery to be an unnecessary additional health risk.
Look at your positive aspects and just as I do, refuse to accept that you have a brain tumour. You have a benign growth on a cranial nerve which is NOT growing in or on your brain and in the majority of cases is entirely treatable without the requirement of surgery.
Best Regards
Derek
-
I know what you mean! About a week after my intial diagnosis, I was at a kids birthday party and one of the adults there was complaining that she had cut her hand on a soup can and was trying to find a lawyer to sue the maker of the soup. Mind you, she didn't even need stitches or anything - "it just hurts and i can't work...". She did pretty well playing air hockey with her son though. Hmmm... Anyway, I was so tempted to just throw in the brain tumor thing to shut her up, but figured she must be so starved for attention, I just let her go on. It got to be pretty funny after a while.
Right after my surgery, whenever anyone would complain about trivial things, I would just say "Ok, anyone here who just had their head cut open with a power saw - raise your hand". They stopped pretty quick when i was the only one raising my hand. I guess you just need to make them put things in perspective every so often.
Hang in there. Remember that some people just feel the need to complain about little things no matter what, and somehow their paper cut seems worse than your brain tumor. Keep your sense of humor - that always helps! ;D
Lori
-
I know what you mean! About a week after my intial diagnosis, I was at a kids birthday party and one of the adults there was complaining that she had cut her hand on a soup can and was trying to find a lawyer to sue the maker of the soup. Mind you, she didn't even need stitches or anything - "it just hurts and i can't work...". She did pretty well playing air hockey with her son though. Hmmm... Anyway, I was so tempted to just throw in the brain tumor thing to shut her up, but figured she must be so starved for attention, I just let her go on. It got to be pretty funny after a while.
Right after my surgery, whenever anyone would complain about trivial things, I would just say "Ok, anyone here who just had their head cut open with a power saw - raise your hand". They stopped pretty quick when i was the only one raising my hand. I guess you just need to make them put things in perspective every so often.
Hang in there. Remember that some people just feel the need to complain about little things no matter what, and somehow their paper cut seems worse than your brain tumor. Keep your sense of humor - that always helps! ;D
Lori
OMGOD! I laughed out loud as I read your post!! Thanks for that laugh! I realize that I am acting strange to most people I know and I did not realize why until yesterday....the " I Have a brain tumor, what's your excuse?" hit me. I love your come back and will use it the first chance I get. Though I have not had surgery yet, I can modify it to say that "anyone here just been diagnosed with a brain tumor - raise your hand?"....even if I don't do that, it is good for a laugh to think about it. Thanks again! These posts may be the only way to keep my sanity as I "watch and wait". MB
-
Hi MB...
I am in total empathy with your situation...it is something that all newly diagnosed 'ANers' have to come to terms with and you will in due course.
We all have our own way of coping with the situation but a tried and tested plan (it has worked for me) is to first and formost undertake maximum research into all aspects of your medical condition including the pros and cons of all available treatment options. Next obtain the services of a neuro consultant who specialises in the treatment of ANs and in whom you have total confidence albeit the final decision on treatment rests with yourself.
I note from your previous posts that you are LUCKY! in that your AN is relativley small and that you are presently in the 'wait and watch' mode. I have been in that mode for almost 6 years and intend to continue until such time that treatment intervention may be required when I will then opt for GK as, in my circumstances, I consider microsurgery to be an unnecessary additional health risk.
Look at your positive aspects and just as I do, refuse to accept that you have a brain tumour. You have a benign growth on a cranial nerve which is NOT growing in or on your brain and in the majority of cases is entirely treatable without the requirement of surgery.
Best Regards
Derek
Thanks, Derek, for these kind words.....Yes, the term brain Tumor was kind of freaking me out....Intellectually I know it is not one and the reminder was helpful. But, emotionally, at this point....it still feels like I have one. Even my husband....though being very kind and supportive....does not really get it. I know....it is an adjustment. Thanks for your help...it is much appreciated. I will probably print your reply so I can refer to it later. MB
-
There was a book published recently (quite witty)
"I have a Brain Tumour - whats your excuse..."
sound a bit familiar ?
Best Regards
ps your amongst friends here
check/search out the "need to rant thread"
I have not heard of that book....will try to find it on Amazon. Thanks, sounds like the kind of humor I need right now.
MB
-
I can really appreciate this thread. My husband and I BOTH have benign brain tumors - his is a meningioma (he's had surgery and CK) and mine is a schwannoma (like an acoustic neuroma but on the 9th cranial nerve rather than the 8th - I'm a wait and watcher) - I've had breast cancer and both my parents have recently been diagnosed with the early signs of Alzheimer's so when someone complains to me about something trivial, I just tune them out.
Talking about books - a great one is "Living With a Brain Tumor" by Dr. Peter Black from Brigham and Women's Hospital in Boston. He is a leader in the field of brain tumors and the book is easy to understand, no nonsense, and very insightful.
Sheryl
-
What you are feeling is absolutely normal. After my diagnosis I had no patience for trivial things. I also had no patience for people who couldn't do anything other than to ask how I was feeling. I found the only thing that helped was the passing of time. I believe that as time passes you too will come to grips with your diagnosis which in turn will allow you to have patience for the trivial stuff.
Cindy
-
I still feel this way .. I lose all patience with people at work ... things that never used to bother me before.. I can't seem to shake now ... ???
-
As a newly diagnosed I am still coming to terms with the AN I agree about the trivia but i feel positive about getting to grips with the little ***** invading my brain space!
However,the thing that is affecting me and making me the most down is the sudden total hearing loss that it has caused which has left me feeling so debilitated - I just want to get some normality back but can't even seem to concentrate properly half the time - until these head noises settle down and I am steadier on my feet I am stuck - I don't think people realise the seriousness of sudden deafness to body function.
As I have begun to tell people, some have kindly shared there stories of a few days poor hearing caused by an infection and what hell it was for them - it really infuriates me as people will know on here it most certainly is not quite the same.
The neuroma side - well that does shut them up but as I said it is the forever deaf in that ear condition that I am grieving for at the moment...
Best wishes to everyone.
-
Hi 'Esperanza'...
I have posted a response to your post on the Cyberknife Patient Support Group 'site relevant to the matter which you have raised here re single-sided hearing loss and which you may find helpful.
Regards
Derek
-
Thank you Derek, you are very kind. As you all are......
-
I just wanted to let you know I definatly can empathize with you............ hang in there.........
-
I had not logged on for a while due to the sudden death of my mother on Jan. 4th ( she was 83 but in good health)....more stress to add to the existing stress. However, this experience has made me feel good to be alive and able to talk on this blog! It is so good to read of others similar feelings re: this topic. It makes me feel that some one understands. Thank you all so much for sharing your stories. I am still in the gathering information mode at this point, since I do not need to make a decision soon.
You are great! ;D
Meebee
-
Hi MB!
I was just diagnosed last week and I have the EXACT same feelings! I have heard so much complaining at work from customers over such trivial things that I want to scream at them....but of course I can't. The stress I am feeling is terrible. Small things bother me that didn't before but hopefully I'll get better as I learn to live with this diagnosis. It's good to know there are others out there having the same feelings, it makes you feel not so "alone"
I have a cousin that has breast cancer(just diagnosed right before Christmas). She had her breast removed and is going through chemo so I know things could be worse.....
Hang in there and together we can all get through this!
-
MB
I just read your last post and wanted to say how sorry I am to hear of the loss of your Mother! I lost my father a few years ago but still have my Mom. Losing a parent is a hard thing to go through.....May your memories give you comfort
Hang in there and take one day at a time............
-
There was a book published recently (quite witty)
"I have a Brain Tumour - whats your excuse..."
sound a bit familiar ?
The name of the book is "I Had Brain Surgery, What's Your Excuse?" by Suzy Becker.
I read it a few months post op and really enjoyed it.
Jan
-
MB -
I'm so sorry to hear about the loss of your Mom. Please know you're in my prayers.
Lori
-
Geesh, I'm happy to see that I'm not the only one feeling this way. Just as my surgery was scheduled (2/28), one of the ladies at work started to limp and said that she might need knee surgery, but she had not hurt her knee recently...the injury occurred when she was 11 years old. ;) I guess she needed some attention, too. Then, there is a young lady who made a fuss about how much weight she had gained from the chemo she had to undergo for breast cancer. >:(
-
Alchemist - I hope you don't mean you lost patience with the breast cancer lady thinking it was a trivial thing. Nothing is trivial about breast cancer even if it is weight gain from the treatment (which from personal experience is no fun).