dealing with watching and waiting

I still get nervous that someday my tumor will grow, even though I haven't needed brain surgery in 20 years. I get all of my old symptoms every years before my annual MRI. How do you deal with waiting and watching?

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Permalink Reply by Susan on September 10, 2009 at 12:55pm
This *wait & watch* doesn't sit well with me - what size do they need to perform surgery? (unless the tumour is in a really difficult space). I can't believe that there are so many people out there who have to wait and wait and wait.....that seems so wrong to me....not fair! Life isn't fair, but they don't make you wait if you have a hole in your tooth, they either pull it or fill it, they don't just send you home with meds and say...let's just wait and see :(

I have a 14mm meningioma, will be seeing my Neurologist for the 1st time on Oct. 5th and now I keep thinking, he might put me on a wait & watch too UGH! I don't get it, isn't it easier to get it out while it's small, then to wait for it to grow as you keep getting older and surgery is harder as we age? I have several lesions too.....I hope he tells me it has to come out, cuz this waiting is already driving me nutzzzzzzzzzzzzz :(
Permalink Reply by Betsy H on September 11, 2009 at 12:20pm
Good topic, Beth. I think your response is fairly normal given the stress of the situation. Once a year just isn't often enough. I know I would feel better about waiting if there were a better means of watching.

For example, I wish there was a less expensive way to check up on tumors between annual MRIs. They know where our BT's are, after all, is there really a need to scan our entire heads? Why not just scan the tumor and the area around it?

Betsy
Permalink Reply by Alice B. Guarino on March 2, 2013 at 6:45am

Hi Everyone,

I am coming up on my first post-op MRI (6 months since surgery) I started feeling anxiety just scheduling the appointment with Radiology and the neurosurgeon. On the one hand, I can't believe I am five months out and on the other, it seems like yesterday that I was in the hospital.

Feeling positive thoughts. I think we spend so much energy on an emotional level, getting through what we need to get through with diagnosis, surgery and recovery, that our mind/brain remembers the stress we had experienced through that time(s) in an effort to just to keep it together .  Does that make sense? 

Permalink Reply by Ann Manzi on March 2, 2013 at 8:57am

Beth, I think we would all agree that we have fears about the future. Since I now have identical seizures on my other side, my emotions are elevated. I try not to let this take control of my life....just remind me how precious each and every day can be. I have times that I would like to know my future, it would help to either relax or prepare. As I tell many, I am not in control and keep trying to find inner strenght to endure. I am not immune to  pity parties, thank goodness; not too frequent. Your friend in this crazy, whirlwind of having a bt. Your friend, ann  

Permalink Reply by MMY on March 8, 2013 at 7:17am

Hi Beth  I have only been watching and waiting for 1.5 years now and sometimes wonder how I can do this for the rest of my life--not to sound "hokie" but...this site has been more helpful than you know for helping me deal with the W&W!  I would otherwise have never been able to connect with people who are going through the same thing.  So much anxiety builds up before the MRI for me and it is only made worse when friends/family downplay it with comments like "I'm sure everything is fine...no need to worry....Oh you're fine just don't think about it..."  Well meaning, but these sorts comments actually have made me feel worse...like I am alone & they have no idea how I feel.  Your posting that 20 years later you still have to deal with the "what ifs..." makes me realize that I am not going crazy and that I can handle the W&W...which is a lifelong sentence (and really the best option relatively speaking!)  

Marissa

Permalink Reply by Beth Rosenthal on March 8, 2013 at 11:21am

Hi Marissa. Thank you for the compliment. I put my heart and soul into IJB, helping the membership, and educating about the serious consequences of benign BTs (while having a daily job, too). I'm happy that you don't feel so alone or crazy because of IJB. I lived and felt isolated my whole life; so I can connect with feeling relief. I wish IJB was around for me.

Also, you should tell your loved ones when they make you feel isolated. I've gone from a survivor to an advocate since starting IJB and I've never felt emotionally stronger in my life. Being open might help empower you.

Good luck with W&W. Thanks for sharing.

Permalink Reply by MMY on March 8, 2013 at 11:54am

Me saying it to them and them changing their behavior are two different things---but I completely get your point--and will keep working on it with them!  Thanks so much...  

Permalink Reply by Alice B. Guarino on March 8, 2013 at 1:50pm

Hi! Marissa,

I find that even if your loved ones don't change right away, you feel more empowered and in control when we speak up. SInce I have no outwardly physical signs of having had surgery and a tumor , people stop asking how things are going and many don't even ask anymore. I have done great and am very fortunate, but I am not, and I think will probably not ever be myself again. Or maybe I should say, I'm a new me! Most people really don't wan to talk about it, so I am glad I can read all of your postings and can spill the beans with you.

I also have gained great benefit from this website. I couldn't believe I came upon it, Beth. I am very grateful, thank you!

Permalink Reply by MMY on March 8, 2013 at 2:11pm

Thank you Alice!  I love the support I gain from the "more experienced" watch and waiters like you. Acceptance is truly a journey and I must just embrace the "new normal."  Since I have found this outlet, I am actually much more patient and understanding (or maybe more emotionally empowered as you and Beth say) toward those extended family members/friends who never ask how I'm coping with it..(even when I drop hints that I might like them to ask!).   I'm getting there!

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