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Newbies, please read this

EZLiving66's picture
EZLiving66
Posts: 1363
Joined: Oct 2015

I've been thinking about this for some time now and anyone new to this board needs to read and understand this.  This board is a wonderful thing but the biggest problem with it is that it is skewed to show the worst. 

Let me explain.  Let's say someone like you, who has just been diagnosed with cancer comes to the board.  We offer support and information.  If, after surgery, you're diagnosed with Stage I, Grade 1 uterine cancer, your doctor will do follow-ups but usually, no further treatment is needed.  You thank everyone for their support, you go on with your cancer-free life and we never see you again.  OR....you have a higher stage and/or higher grade cancer - you stay here while going through treatment and maybe awhile after being declared NED (No Evidence of Disease), but then you drift away because you don't want to be reminded you had/have cancer.  OR....you die and hopefully we will see you in the great beyond but you sure won't be on this board anymore.

So, whose's left?  Mostly women getting an initial diagnosis who have questions, going through or about to go through with chemo/radiation, ones coming back after a recurrence or ones in hospice.  That makes it look like most everyone with this disease is doomed!  There are a few of us who are NED who come here to offer support and comfort so newbies can see that there is a light at the end of the tunnel and it's not a freight train.  Sandy is one of those rays of light, as is Abbycat, Double Whammy (Suzanne) and Charissa and there are others.

PLEASE don't look at this board as a cross section of women who have/had uterine cancer.  There are MANY more survivors than victims. In all likelihood, YOU are one of those who will be cured either with just surgery or chemo/radiation. 

We LOVE it when you come back and tell us you need no further treatment because they got it early. And, we understand why you don't want to be reminded (I had to stay away for awhile because mentally, I just couldn't handle losing some women I considered to be good friends). But after you're cured, pop in every once in awhile to say hi and give all the newbies some hope!  

Love,

Eldri

XTREME
Posts: 17
Joined: Feb 2018

Eldri, thank you, this is very helpful.

 

Big Apple
Posts: 11
Joined: Jan 2018

Eldri thank you I’m 2 weeksout from my hysterectomy st 2 grade 3 mmmt.  Paralyzed with fear still very anxious.  Seeing thr gyne onc at u of Pittsburgh  Feb 15 they see 75-95 cases of Mmmt per year.I’ll start chemo right after that. sSshe is talking Isophosamide/taxol and Mesa every 3 weeks.  All nodes and omentum were a were neg. lm 65 and a nurse just retired in nov 2017.  I’ve gotten lovely and supportive posts from some members but his tumor is so aggressive I’m afraid it has already spread.

Charissa's picture
Charissa
Posts: 124
Joined: May 2016

Oh, Eldri, I love you!!! This was so perfectly and beautifully written. You are such a blessing and so right! Thank, you sweet girl, for remaining committed to helping all these women. I would say most go away cured and don't come back, unless a reoccurrence.  It is a scary place and life-altering experience when you receive this type of dx. 

For you survivors (whether six months or six years+) to remain committed to comforting and encouraging these women forward, is amazing! We so appreciate you!!!

May we all support and encourage each other, one way or another, and never forget all we received here, along with take time to give back to those who are new and coming in.  There is a bond and safety network here, like no other, where nothing is off-limits to discuss pertaining to this journey. 

Be blessed and grow some friendships here.  These women are beautiful, loving, caring, encouraging, honest, and desire to comfort you.  You have nothing to loose, but only to gain.

saltycandy13
Posts: 167
Joined: Dec 2017

I thank you for that great expression of kindness.  I am one of the lucky ones.  I posted my pathology report on here and for having the early stage of uterine cancer, I am okay and need nothing further at this point.

However, that doesn't mean I don't have empathy and sympathy for everyone woman on here that is going through Hell with this demon.  I don't plan on going anywhere. 

I will admit, I don't know much about radiation and chemotherapy but if I can be a shoulder for those and some of the newer ladies just worrying and wondering "do I have uterine cancer?"  I'm there for everyone.

I would like to do more because seeing I had cancer, doesn't mean I'm gonna be a user for everyone that welcomed me and got me through my hysterectomy.  I was scared to death.  A special thanks to Anice, Jeannette and Mrs. Berry for their kind personal notes.

Nope, can't get rid of me.  I plan on helping (for what it is worth) to inspire, support and consult.  I know what it's like to be alone in this.  Having just one friend with a hysterectomy, you lovely ladies have given me hope and strength and much knowledge.

thank you Eldri for the great posts!

Charissa's picture
Charissa
Posts: 124
Joined: May 2016

Awe, Saltycandy13, your post radiates much gratefulness, appreciation, and empathy.  Thank you, for finding this wonderful site and for desiring to remain. So happy for your outcome!!!  I know the newbies will appreciate you, along with all the other committed and beautiful women here. We are so blessed to have found each other.

ReginaMarie
Posts: 11
Joined: Feb 2018

Everyone needs to read this. Thank you so much. :) 

Soup52's picture
Soup52
Posts: 902
Joined: Jan 2016

Eldri, very good post! I’m one who still visits even though I’ve been Ned since August 2016. I want to read of new treatments and most important know how everyone is doing and offer support. I also participate in a weekly support group at home and expressed that I feel others in my group are struggling with reoccurance. When I voiced this the said, no, you give us hope ! Keep coming:)

Charissa's picture
Charissa
Posts: 124
Joined: May 2016

Good to see you Soup52. I came in only a few months before you. It's so wonderful to see you're remaining NED.  It is so important for the newbies to see us come back and visit. Like your ladies voiced, this gives them hope. I am GRATEFUL for all the ladies who are committed to checking this weekly, if not daily.  Even though I don't get on frequently, it warms my heart and blesses my day to see the people who started the journey before me still encouraging others.  And, it breaks my heart when we loose some. But, they also give me much courage in knowing we will all be reunited some day again.

survivingsu's picture
survivingsu
Posts: 134
Joined: Apr 2013

Hey Eldri,

You have a great point!  Thanks for looking out for all the newbys here.  I discovered this site after my treatment.  I had my cancer 8 years ago now, and went through simultaneous chemo and radiation, then surgery, then follow-up chemo.  I had a rare and agressive form of small cell undifferentiated carcinoma.  Once in a while I check this site and sometimes contribute if I think my experience might be helpful to others.  Reading others' posts was/is both informative and inspirational.  Even though everyone's experiences are unique, it has been comforting to know one is not alone in this journey.

You are awesome Eldri,

Susan

Charissa's picture
Charissa
Posts: 124
Joined: May 2016

Thank you, Susan for sharing. Eight years gives me and I'm sure many others much hope.  Yes, please do keep checking in and offering encouragement to those in need. Thank you, for returning and contributing on occasion.  Keep coming back! You're testimony is inspiriing.

EZLiving66's picture
EZLiving66
Posts: 1363
Joined: Oct 2015

Thank you for coming back too, Susan.  You give us all hope that this d*mn disease CAN be defeated.  I love to read those kind of posts!!!

Love,

Eldri

calliegirl
Posts: 48
Joined: Jan 2018

written Eldri.

Thank you.

I'm a recent newbie...we a lot of concerns/questions...I completely understand and agree with your point of view.

Hope you are doing well! :) Missy

txtrisha55's picture
txtrisha55
Posts: 684
Joined: Apr 2011

Mine is not so much of wanting to remember I had cancer, I remember it every day.  It is something I live with now.  It mainly that I get busy and forget to log on to check the site.  Although when I do log on, I do read and comment if I can add something that has not already been said.  I do not mind sharing my story as most already have read it.  I do miss all the ladies that have passed and regret seeing all the new ones. Praying for eveyone. trish

Charissa's picture
Charissa
Posts: 124
Joined: May 2016

txtrisha55, me too - busy with life, and two teenage daughters. But, it is nice when I do pop in and see all you ladies still here.  Yes, I too am sad, with those who have left us.  Chris (aka editgirl) became a wonderful friend. I'm most definitely feeling a void. I'm not sure who else has left us, in the last year and a half. Thank you, for your prayers. Those are most cherished and effective. Blessings, with virtual hugs.

EZLiving66's picture
EZLiving66
Posts: 1363
Joined: Oct 2015

Trish, thank you for coming back to let us know this cancer is not a death sentence. Living with this disease on a day-to-day basis is not for sissies.  Please keep visiting - it gives us all hope!

Love,

Eldri

Northwoodsgirl
Posts: 559
Joined: Oct 2009

Well said Eldri! This discussion board receives input from so many women who are in varying stages or points in their journey to fight gynecological cancer. So some of us don’ t visit or post because we want to get on with our lives but then for some of us we come back

to the site to see if we can be of some help to another woman trying to understand this life threatening disease and what to expect in surgical procedures or treatments. I am very grateful to be a survivor 9 years but there isn’t a day that goes by that I don’t think about cancer- probably because I , like  so many of us have a few residual side effects from chemo and radiation.

I am not the same person since cancer developed in my body. I don’t take life for granted. I am so thankful to have every day of life dancing with “NED”.  It still brings tears to my eyes when I think of those who fought the battle of gynecological cancers who have passed away. Reoccurrence is always in the back of my mind. I live in hope and faith of better things to come. We all strive to help those women  newly diagnosed as well as those of us who suffer reoccurance. We pray for improved survival rates and ultimate prevention and cures. We worry that too many others will some day receive the diagnosis and not know what to do next. We honor those women who have gone before us. Blessings to all....keep hope alive....

Lori

EZLiving66's picture
EZLiving66
Posts: 1363
Joined: Oct 2015

Thank you, Lori, for coming back and giving us hope!! Nine years is quite an accomplishment. 

Love, 

Eldri 

 

Cass83's picture
Cass83
Posts: 151
Joined: Feb 2017

What a fabulous post! Thank you so much!!  I too pop on and catch up and post when I feel like I might have something to add, or encouragment to give. The positive outcomes do need to be made known to give hope to new people. What a wonderful idea and post! I hope all new people read it too!

ncg007
Posts: 132
Joined: Nov 2015

Eldri....Great post!  Like you, I had to stay away for awhile and I am one of those that now browses occasionally and comments when I can be of help.  I will try to do more to pay it forward, as the wonderful members past & present were a big help to me.  I am happy to say I am NED from an aggressive stage IIIC1 High grade 3 diagnosis June 2015.

Hugs to you all!

Nancy

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

Thank you for sharing your thoughts about this board and the members.  Like Northwoodsgirl and txtrisha55, I think about my cancer everyday. Often times, I am reminded due to the incessant cancer treatment commercials on TV, in the newspapers and on billboards. I don't visit here often, partly because I want my cancer to be viewed from my rear window and partly because it saddens me to see other women here suffering and still others passing on.    

I am still NED since my diagnosis more than 4 years ago.  I was diagnosed with UPSC, stage 3a with a positive wash.  I don't take any day for granted.

Warm Wishes,

Cathy

 

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

Lori's sentiments.

I also vacillate between staying on the site and moving on. So far I keep boomeranging back.  

Olguin's picture
Olguin
Posts: 1
Joined: Feb 2018

Hola.  Im from  Puerto Rico and have been figthing endometrial cancer since 2010. Now I have it metastized on my left lung. I joined today  and believe is a great place to be and have others that understand what you going thru.  Learn from their situations and know you will always have a place to come and be able to express your self.   I'm sorry I did not know about this site before.  Un abrazo guerreras... 

Deb17
Posts: 14
Joined: Feb 2018

i was diagnosed a year ago with Stage  IVb uterine cancer.  I’m happy to see you’ve been fighting for over 7 years.  Kee up the battle.

EZLiving66's picture
EZLiving66
Posts: 1363
Joined: Oct 2015

Welcome to the board.  It's a good place to ask questions and find other women who understand what you're going through.

Love,

Eldri

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1564
Joined: Jun 2015

Welcome Olguin. Sorry to hear of your recurrence. I'm glad you found us! 

Love your picture.  Stay strong and please keep coming back.  We are here for you.

Love and Hugs,

Cindi

 

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

So glad you found your way here. Are you currently in treatment or waiting to start?

Love your picture.  The title of the magazine says it all  

Are you back to normal from the hurricane?

 

Kaleena's picture
Kaleena
Posts: 1978
Joined: Nov 2009

Great post Eldri.   I have been bouncing in and out of here for many years.   

To all newbies, Diagnosed in 2005 with Stage 3a, Grade 2 Mullerian Endometrial Adenocarcinoma.   

Hugs to all!

Kathy

gbazyl's picture
gbazyl
Posts: 23
Joined: Feb 2018

Than you so much for the great post....I have been reading almost all of the strings of information and find it heartwarming that women can share such a personal fight.

 

I learn a little something each day and you are making me more informed so that when I see the oncologist on Friday....some intelligent words may come out instead of sitting there is shock.   I now know what to expect...thanks to you.

 

Right now my mind is consumming every ache..every odd feeling...I feel like I am going nuts LOL   I hope that is normal!

 

Will update you on Friday.

 

Thank you for being here.

 

 

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

Definitely normal. Hang in there. 

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