Hard to comeback

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Hard to comeback

by huxley2006 on Wed Nov 14, 2012 05:42 PM

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Do any of the people who are long standing members find it difficult to comeback regularly? I am a LTS of Brain cancer.  I have 19 years experience with this Monster. You think I could offer some sort of input that would help.

To be honest don't think there is anything  I can offer other then get good doctors, hope you are one of the lucky one's, pray for a cure abd stay away from Dr BJ

Hux...

RE: Hard to comeback

by bpp30m on Thu Nov 15, 2012 01:12 AM

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On Nov 14, 2012 5:42 PM huxley2006 wrote:

Do any of the people who are long standing members find it difficult to comeback regularly? I am a LTS of Brain cancer.  I have 19 years experience with this Monster. You think I could offer some sort of input that would help.

To be honest don't think there is anything  I can offer other then get good doctors, hope you are one of the lucky one's, pray for a cure abd stay away from Dr BJ

Hux...

well i dont consider us long term survivors, were just 18 months in, but i can tell u that i value your input anytime you post as well as other long term survivors. your answers are spot on, to the point and always helpful. and i wholeheartedly agree about finding a good doctor

matt

RE: Hard to comeback

by jon4156 on Thu Nov 15, 2012 02:01 AM

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Yes and no.  I find I have to take breaks occasionally, especially when there is a stream of bad news of people going downhill.  It also does not go unnoticed that probably 80-90% of the people that were here when I joined are no longer participating, and we all know why.

Small sidebar here, one thing I have noticed over that time is that newer arrivals are not sharing their photos whereas when I joined the group almost everyone shared their photo.

I have felt at times that I have no more to give to the group.  Everything I have researched I have shared, and frankly there isn't a lot more to research.  However, I keep coming back because of the following quote, "I fight because it is all I know".  I refuse to leave any stone unturned and my way of coping is to spit in cancer's ugly face by keeping myself educated on any possible way to eradicate it.  It's the least I can do since I've been blessed to live without brain cancer.  My wife deserves no less and anything I discover for my wife I share with everyone here as well.  I have to admit there's an element of selfishness in it as well.  If GBM takes my wife from me I want no regrets that I didn't do everything I could to stop it.

RE: Hard to comeback

by siblingof on Thu Nov 15, 2012 02:53 AM

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Jon, who has time to upload a photo? Or the interface? I can barely make this site work well enough to post-- sans paragraph breaks. Huxley, I value your input, and of course your voice against "dr." B, who makes me very angry. I know now that we're not looking at longterm survivorship... two years in and fading fast.

RE: Hard to comeback

by slbbw on Thu Nov 15, 2012 04:34 PM

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My husband is by no means a long term survivor, but even I find it difficult to come back when things are going well, and they have been for a while.  It is always a sobering reminder that it could always recur. 

I have to say, your posts are always helpful, and I am personally greatful for the responses you have given.  I think it is important to pop in and help where you can.  You may feel like a broken record, but when people come here at the begining everything is choas and a rational response can be very helpful.  I hope to be like you in 10 years and tell everyone how my husband beat this thing. 

RE: Hard to comeback

by Bulley1 on Fri Nov 16, 2012 04:15 AM

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My 2 cents worth.  Any post from a long term survivor is an inspiration.  I too miss pictures and bring to mind past warriors from their pictures (who could forget Carmen's Wife pool picture or Sherri and family in their red Cardinal shirts - Josh is still with us).  And Sibblingof has to be the absolute best sister!  You set the standard, girl. 

 

RE: Hard to comeback

by CarmensWife on Mon Jan 07, 2013 08:58 PM

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wow! that just gave me goosebumps.

How I do miss those days where we soo needed each other so much. how we were closer to each other than to our own families at times.

Made me feel so good when you mentioned my " pool picture"

That seems like yesterday, yet a lifetime ago. I have been coming back here now and again, because I miss " us" I cry hearing the new sad stories, I still hear the desperation in everyones " voices" the same questions posed a little differently.

I pray for everyone here, everyday.

peace be with you all.

Linda..

 

RE: Hard to comeback

by vwxyz on Tue Jan 08, 2013 12:33 AM

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Linda, sincere gratitude for your prayers.  How are you?  J

RE: Hard to comeback

by sluss910 on Tue Jan 08, 2013 01:49 PM

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:)  Tears came to my eyes and chills to my body when I read this and everyones follow up.  We are currently 26 months out of diagnosis and wow, what a ride it has been (and continues to be).  Goodness our daughter was 16 months when we first started and now she will be 4 in April!!  My profile pic is a little outdated. :)  Speaking of which I do miss seeing who people are.  I too find it difficult to come back at times.  I definitely have to take breaks from the site as I can obsess over things.  But, I'm always drawn back to it and even if I don't post as much as I use to, I often "lurk".  This website has been an invaluable resource for me and I have "met" multiple people with whom I keep in contact with off the site who have helped me through this journey!  When I find out about someone with a new cancer diagnosis one of the first things I refer them to is this website and CaringBridge/Care Pages! 

Prayers for you all!!

~Sheri

CB:joshslusser

RE: Hard to comeback

by modesta on Tue Jan 08, 2013 02:23 PM

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I lost my husband (31 month survivor) on March 7, 2011 and I still come here just about every day....I can't tell you why, but I just can't let go!

 

Praying for strenght and peace for everyone

 

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