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Tammy
Senior User
Joined: 27 Nov 2007
Posts: 115
Location: New Brunswick, Canada
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 Posted: Tue Jan 22, 2008 8:35 am Post subject: silent |
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Hey, its me again. I been here online for a bit now (this morning) reading a few blogs and writing email to my friends and I think I just have to let go inside a bit. I hope you all don't mind. You know something I am really really scared, down hearted and so mad. My dad wants me to go back to work. I don't want to. I really don't want to. Funny cause I always loved it there. Now I cant stand the place. I don't even visit anyone I worked with. Been there for 13 years. Now I only go to pick up my prescriptions that's when I don't have someone else pick them up for me. Everything is moving so darn slow with the doctors. I do have good days... Here and there, actually the weekends are pretty good when I get to drink. Makes me feel better. I get that happy go lucky feeling the person I always was before all this happened. The therapist I see gave me a book to read (Remarkable Recoveries)I must admit I read some but I don't really believe those stories. I told him I do. Also told him I am seeing the future and doing pretty good so he figures I am getting better to adjusting to everything. I know in my heart I am not. I don't see the future I want. My son is only 9 and I am at my best with him (he is a really great kid, and I am afraid I will not get the chance to see him grow) and now he is trying so hard in school bringing up his marks and doing that very very well I have to say! The teachers are amazed for his hard work and turn around. And you know why its because I told him it helps me get better what a liar I am uh. I put this happy face on for everyone who comes here. And when my husband asks how I am doing I lie and say good because if I say I don't feel well he gets mad for some reason not like a rage or anything, he will just sort of step back from me and make a excuse that he has to go get something or his friends needs something. GRRR. It's just I don't know I am sorry. Just wanted to let loose a bit I think with people I don't know. I think I am starting to sound like a loon a tick, so I better sign off now, excuse all the mixed up emotions, was witting what I was feeling and trying to get it all out at once. Sorry. I will be back when I am in a better mood. Take care.
Tam  |
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 5611
Location: Tennessee
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Tammy
Senior User
Joined: 27 Nov 2007
Posts: 115
Location: New Brunswick, Canada
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| Posted: Tue Jan 22, 2008 5:57 pm Post subject: Silent |
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Hey Jim,
How are things going with you? I think we are all in the same shape with everything as you say. I think of what you have said before about the holidays, are you feeling any better than before? Thinking of you! 
Take care your in my thoughts
Tammy |
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 5611
Location: Tennessee
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Tammy
Senior User
Joined: 27 Nov 2007
Posts: 115
Location: New Brunswick, Canada
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| Posted: Thu Jan 24, 2008 10:21 am Post subject: Silent |
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I hear ya Jim, I am so happy I stumbled on this site. Even on my bad days I come here just to read other stories. I am going to my counselor today, I am not in the mood to go, but I suppose it does help a bit. There are so many stories on here. Some are really heart warming and others are sharing the same feelings I am having.
I have been having more facial numbness now, and more clumsy. I don't know if anyone has anxiety, I have a hard time dealing with that. I take nerve pills when I go out in public. One thing also, lately I been having really bad nightmares, not about me but the people I love trying to save them from really bad things. I wake to a emptiness feeling like I have lost someone. Strange it seems. Does anyone else have things like this? God I hope I am not alone no this. Nice to type feelings on here as no-one knows who I am.
Its a sunny day here, but very very cold. Waiting for my parents to pick me up for my doctor appointment. The not driving settles well with me. I don't miss it at all. Well I should get going. Take care all.
P.S>> I found this quote in a book and I thought I would share it with you all, trying my best to put it in my way of living...
[b]Life isn't about waiting for the storm to pass....It's about learning to dance in the rain.[/b] |
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Aimster
Regular
Joined: 03 Jan 2008
Posts: 38
Location: Nebraska
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| Posted: Sat Jan 26, 2008 9:58 pm Post subject: Re: silent |
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[b]Life isn't about waiting for the storm to pass....It's about learning to dance in the rain.[/b]
Tammy, thank you for sharing that quote. I've posted it on my computer monitor at work where I can look at it often - I am resolved to make it my new motto. I'm struggling too, trying to look happy for my family's benefit while inside I'm quietly freaking out, and it helps a lot to know I'm not alone.
_________________
Amy (39)
*low-grade oligoastrocytoma in right frontal lobe, with 1p/19q codeletion and early anaplastic features (first observed Aug. 2007; diagnosed Jan. 2008)
*gross total resection July 2008 at Mayo Clinic
http://cancerforums.net/viewtopic.php?p=28526 |
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Tammy
Senior User
Joined: 27 Nov 2007
Posts: 115
Location: New Brunswick, Canada
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| Posted: Mon Jan 28, 2008 6:18 am Post subject: Silent |
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Good Morning Amy,
How are you? I am glad that the quote meant a little something to you also. And I also am very happy that I am not alone in all these flying emotions. Some days I cant handle myself at all. I try my best to live by the quote may help not fully but I like to try and think that it helps in some little way. Someone told me to try meditation, I have tried but its really hard to do, not going to give up though am going to try it again and again till I get it. Take care, and I am thinking of you!
Tam~ |
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Tammy
Senior User
Joined: 27 Nov 2007
Posts: 115
Location: New Brunswick, Canada
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| Posted: Thu Jan 31, 2008 12:28 am Post subject: silent |
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Hey there, It's me again I was just wondering if anyone would have any suggestion as to what I should do after the results of my MRI *feb* and the results are in from the 1P/19q gene deletion tests? Should I ask about starting a treatment besides being on my dilantin for seizures, diazapam and aprozolam for my sleep disorder and anxiety? Or should I leave this up to my doctor? I am now on a watch and wait, mri's every 3 months, this will only be my 2nd mri since my biopsy in Oct 07. I know I have a grade 2 oligodendroglioma measuring approx 4.9cmx5.6cm on my right frontal lobe, it's just above my right ear and right behind my temple. Does any of that make a difference? The tumor is on the right or left side? Or the size of it? Where it is? My symptons are growing also, but I always think well maybe its only my nerves...... *sigh*
One other thing I was questioning myself. I was going through all my medical records that I have here on hand from my doctor. I have hemangioma of the liver which I never told my neurosurgeon about, I completely forgot about it. I found out about that 6 years ago, when my platelets shot down to 63, they are better now not normal but much better. I am also anemic. I assume my family doctor told everything to my neurosurgeon, just when I was asked questions at the surgeons office, like I said before I blank out. So if anyone has any suggestions at all I am open to everything. OK that's enough I should get to bed before my hubby wonders what I am up to..HA HA Take care talk again soon!!
Tam~ =) |
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Aimster
Regular
Joined: 03 Jan 2008
Posts: 38
Location: Nebraska
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| Posted: Thu Jan 31, 2008 10:36 am Post subject: Re: silent |
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Hi Tammy,
I'm new to all this so am not exactly the best person to be giving advice ... but in your situation, I would want to sit down with the neurosurgeon again and talk about the size and location of your tumor and how this affects your treatment options. My understanding is that tumor location is an absolutely critical factor, and I'm kind of surprised they haven't discussed this with you already. It is very reasonable for you to want an ongoing dialogue about when you'd start treatment and what the possibilities might be.
For me, all these unknowns make it much harder to cope. I do better when I have a couple of possible game plans sketched out for me - that way I know what I'm coping with, even if I'm not sure which of the several paths will be the exact one I take. I can put my arms around it.
I don't know anything about the impact of your other medical conditions, but my past experience (from complicated pregnancies) is to NEVER assume that anyone knows anything. You pretty much have to doublecheck everything, and sometimes continue to remind the doctor of your particular situation. The gaps in communication between doctors can be big enough to drive a truck through 
_________________
Amy (39)
*low-grade oligoastrocytoma in right frontal lobe, with 1p/19q codeletion and early anaplastic features (first observed Aug. 2007; diagnosed Jan. 2008)
*gross total resection July 2008 at Mayo Clinic
http://cancerforums.net/viewtopic.php?p=28526 |
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 5611
Location: Tennessee
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| Posted: Thu Jan 31, 2008 11:43 am Post subject: Re: silent |
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Tam, bottom line answer is if a question is worth asking us for our opinion, it is worth asking your own medical team . Certainly, it is not out of place for you to ask about further treatment (by the way, including stereotactic radiation therapy). My own personal experience is that treatment decisions are a team decision made by you with input from all of your medical team. I guess, in a sense, that includes input from your family and friends and us  .
Thinking about you.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54 |
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Tammy
Senior User
Joined: 27 Nov 2007
Posts: 115
Location: New Brunswick, Canada
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| Posted: Thu Jan 31, 2008 12:19 pm Post subject: Silent |
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Hi Amy, Jim everyone!! How is your day so far? It's been a hard week here for some reason. I am sorry that your going through a rough time as well, I think this is one of the hardest things we ever had to deal with in our lives. Not just us but everyone on this site, I am so happy I found this forum, its a place I can come for a release and bits of advice from anyone who don't know me or judge me, just.... give me something to hang on to. My mind is a roller coaster and wont stop to let me off. This week my gram was diagnosed with non-small cell carcinoma and mesothelioma in both her lungs. Loosing my grandfather to the same only 9 years ago. Gram can only have chemo pills as her heart can not take anything else. I'm telling ya I am trying my best to stop my mind from losing its way and *over thinking* about everything. It just seems like with all that's going on with my gram its making me question what's going on with myself, she to had a brain tumor *it was non cancer* which was removed 6 years ago and now she has this>!!!!?. I know I am probably being selfish I do realize I am not the only one hurting here,,,, we all have our own song and dance/problems ... Its just....... Where does this end? Maybe I am reading into everything to much I don't know. Thank you Amy for your input. Even if you don't feel your responses help ,,, they do, it helps me to open my eyes wider and say HEY I am not alone and these people are going through the same, and are actually caring enough to respond with kind words or their own experiences. Thank you again,,,You and everyone on here are in my thoughts and prayers ........ =)
Tam~ |
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brainman
Site Admin
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Location: Tennessee
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ksplat
Super Moderator
Joined: 26 Apr 2007
Posts: 577
Location: Brisbane, Australia
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| Posted: Thu Jan 31, 2008 7:55 pm Post subject: Re: silent |
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Hi Tam
What a rollercoaster ride you are experiencing!! So sorry to hear about your Gram's diagnosis. Unfortunately, these kinds of shitty things happen to just about everyone, everyday. All you can do is jump on & hang on!
I was gravely ill in 2005 & wasn't expected to live. Acute kidney failure & pulmonary haemmorage. Very sick girl, a husband & 2 young boys 6 & 10. I pulled through sufficiently to go on to dialysis for the next 2 yrs. My Dad passed away the year after in 2006 & in 2007 on the 1st anniversary of my Dad's passing my gorgeous 46yrs old big Brother found out he had a GBMIV!! Like I said shitty things happen to us all & I guess it's all part of our life's lesson. I know it's a cliche but...."what doesn't kill you makes you stronger".
I felt sorry for myself for a long time during my illness & I'm sure (I know) my Bro has his own depression to overcome.
I'm glad you are benefiting from "offloading" on this forum & I have been following your story with great interest.
I am finishing with a quote which has become a bit of a catchcry for me:
“LIFE IS NOT A JOURNEY TO THE GRAVE WITH THE INTENTION OF ARRIVING SAFELY IN A PRETTY AND WELL PRESERVED BODY, BUT RATHER TO SKID IN SIDEWAYS, THOROUGHLY USED UP, TOTALLY WORN OUT, AND LOUDLY PROCLAIMING, “WOW – WHAT A RIDE!”
Peter Sage
Entrepreneur & Speaker
My prayers & thoughts are with you always.
Cheers, Aussie Angie.
_________________
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227
"Without Faith We Have Nothing" |
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Tammy
Senior User
Joined: 27 Nov 2007
Posts: 115
Location: New Brunswick, Canada
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| Posted: Tue Feb 05, 2008 10:17 am Post subject: Re: silent |
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Hi everyone, Hope you are all doing well. Haven't checked in for a few days, spending time with my gram she is so strong. I admire her strength. Its remarkable......I hope I can learn from her *shrugs* who knows.
Thank you for your words to all who have replied. Means ALOT~~~ <3
I went for my mri yesterday, I did very well this time, I am claustrophobic so its difficult for me getting in the machine along with the head gear being bolted down it really plays on me, but the nurse always gives me medication and music to help me relax, and actually yesterday I really listened to the music...and relaxed pretty darn good this time!.. *smiles*...now it's the wait game again. I really hope my tumor never grew. So nervous but....*crosses fingers and looks up*. Although there is one good thing here with me~~ my hubby said he will come with me to the doctor, it's a few hours drive and I believe this will do us well, just him and I, he never came with me to any of my doctor appointments, my blood work yes but never to the doctors. I think\hope my hubby is coming around with making terms of everything now, he still don't talk much on it but he listens to me now without getting upset and making an excuse that he has to go somewhere. I am still working on telling him my inner feelings....... I am trying my best to be strong for all my family, its really hard for me....very hard...... Angie THANK YOU for sharing your story, my heart feels for you and your family, I will have you in my prayers. I really like your quote, it does make sense!. I had a really good day yesterday, even felt good. Today its BLAH again. Still working on my thinking,,, I know one day I will be **ME** again. Take care everyone, have a good day xox...
Tam~ |
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Tammy
Senior User
Joined: 27 Nov 2007
Posts: 115
Location: New Brunswick, Canada
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| Posted: Fri Feb 08, 2008 2:04 pm Post subject: Silent |
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Good day to you all.
Well I had my mri on Monday and it showed that there was no big change, didn't grow very much!! Also he said he will not be able to remove it all so it may re occur as a higher grade . I decided to agree with his suggestions as to watch and wait for a bit longer, not that I don't want it out like RIGHT NOW, but I will wait until all my symptoms get to much to handle. I believe that it's amazing news *not a large growth!!!!!!* I felt like I won a million dollars when my doctor told me the news. My next mri will be in august and I hope for the same news. I am still unable to drive, still taking dilantin along with other medications. Now I just have to pray fort he same news for my next mri!!!!. My doctor says if any of my symptoms worsen or change I have to call him. The tiredness, migraines, numbness, hearing and balance problems are something I am going to have to learn to live with it for now. I accept that right now( I will learn to dance in the rain). I have to go lay down for a bit, am very sleepy at the moment!!! Take care all, and you are all in my thoughts and prayers as always.
Tam~ *hugz* |
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How terrible!!! I cannot begin to know how devastating this news about your grandmother's cancer is to you. Be assured that she is in my thoughts and prayers. Keep us informed.