Is there Light at the end of the tunnel

[JuliePA]

I am 4 1/2 months after CK..
I am still fatigued quite easily, On & Off steriods for swelling.. The cold air makes my Tinnitus SCREAM.. Going to work or shopping and the noise and lights make me feel dizzy.I hate going out !! . I feel like a mess, gaining weight!! . I know each person has different symptoms, but will it ever end??     My Short term Memory is gone as well.. I keep a log so I know what I felt like yesterday.. I guess things could be worse..   

[leapyrtwins]

I didn't have radiation - chose surgery - but it's my personal belief that there's always a light at the end of the tunnel in just about every situation 

Things will get better, just have patience and keep the faith.

Jan

[goinbatty]

Hi Julie,
I've found that using a dense earplug like they use with MRIs actually makes my ear feel much better in general.  I use one when out walking because the cold air makes me ear sting/hurt, for lack of a better way to describe it.  It also keeps it warm.  I keep a handfull of earplugs in my purse and use one in any number of situations.  I do feel odd plugging my ear at church.  Can you imagine what people around me must think....here this lady came all the way to church and must not want to hear what the pastor has to say!
In my situation, I also have gained some weight and have some memory issues which could be AN related but also age/hormone related.  It's very frustrating.  Post it notes are my friends.  And I'll tell you something I started doing even before CK.  When I'm away from home and need to remember something, I call home and leave myself a voice mail.  Guess I could use my phone calendar but it's much easier to leave myself a message.  Then when I get home and take off the message, I immediately write it on my desk calendar.  Without that calendar, I would be lost. 
Hope you get to feeling better.
Sandra 

[mindyandy]

Ahhhh yes the post radiation period. I am 11 months out right now and was having problems around 4 months like you. I was also on and off the steroids and had gained weight. I do want to tell you that YES there is light at he end of the tunnel. Altho I still sometimes get on/off "wonky head" symptoms.
I do hope you feel better soon. I do understand that it feels like "it'll never go away" but eventually things do lessen and then you dont really notice it anymore.

Hugs to you and keep us posted 

[Jim Scott]

Hi, Julie:

I'm sorry to learn about your post-CK problems and hope and will pray that you soon find relief. 

Of course there is 'light at the end of the tunnel'.  You're healing and that can be a difficult time, as you now know.  Not everyone heals at the same rate or has the same experience.  Avoiding or at least minimizing the things that give you trouble, when possible, is an obvious solution.  When these things (such as work) cannot be avoided and frustrating problems arise, try to realize that this is not a permanent situation by any means.   Your brain is healing and the radiation does generate swelling.  I had FSR and experienced some swelling, which was mildly annoying.  Fortunately, I was able to avoid using steroids. I also realized (and my doctor verified this) that the situation was transient.  Two years later, the swelling and discomfort are distant memories, just as they will be for you, too.

I guess what I'm trying to convey is that not only is your current unhappiness (due to the after-effects of your CK) a temporary condition but remembering that and using it to help you better cope with the problems you're having should be an encouragement to you. 'This too shall pass'.

Jim

 

[ppearl214]

Hey Julie,

Well, I'm 2-3/4 yrs post CK and still run into issues.... your journey post-CK has just truly begun and yes, you are in the timeframe that things may... just may... crop up. We know that the first (approx) 9 mos, regardless of which radio treatment done, that things can crop up.  But, sounds like the dr is watching and working with you closely (ie: steroids and such) so that is great.  Please check the "radiation/Radiosurgery" forum (as you have, by posting here) as well as the "Post Treatment" forums.... for remedies to help counteract some of the things you are dealing.

We know fatigue is common for all brain tumor patients, regardless if malignant or benign tumors, esp. post treatment. For me, I have learned that it is part of the overall journey, to learn ways to counteract it (by exercise, diet and listening to my body when it wants to rest). In the New England winters, I've learned that my ear muffs are my new best friends (the cold gets me as well).  I've learned that, as part of the AN journey, there are just some things that I cannot change... so, for me, I've learned to embrace them... for me, my little reminders of the journey I take.. and I can either learn to accept it and learn how to cope with it.... or just curl up and not try to forge forward. The latter is not an option in my book, so I just try to deal with it as best as I can... there is nothing more than that I can do.

I send the wellness huggles... and wishes... and please know that you have done what is best for you and your situation. Know that we are all here to help you through this.... Yes, the timing is a tough one.... but, you can do it... you can hang strong and we're here to help you along the way.

Hang tough...

Phyl

[JuliePA]

Thank you everyone. with your kind words and encouragement. It does help  I have been reading as much information on here as possible and have learned more than from my treatment team.. Thank you!