Newbies, please read this

EZLiving66

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

Eldri, thank you, this is

Eldri, thank you, this is very helpful.

 

Big Apple

Eldri thank you I’m 2

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.

saltycandy13

Great Post

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!

ReginaMarie

Everyone needs to read this.

Everyone needs to read this. Thank you so much.  

Soup52

Eldri, very good post! I’m

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:)

survivingsu

Wonderful Eldri!!!!

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

calliegirl

Beautiful

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

Mine is not so much of

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

saltycandy13 said:

Great Post

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!

Awe, Saltycandy13, your post

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.

Charissa

Soup52 said:

Eldri, very good post! I’m

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:)

Good to see you Soup52. I

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.

Charissa

survivingsu said:

Wonderful Eldri!!!!

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

Thank you, Susan for sharing.

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.

Charissa

txtrisha55 said:

Mine is not so much of

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

txtrisha55, me too - busy

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

survivingsu said:

Wonderful Eldri!!!!

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

Thank you for coming back too

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

EZLiving66

txtrisha55 said:

Mine is not so much of

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

Trish, thank you for coming

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

Eldri

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

Thank you, Lori, for coming

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

Love, 

Eldri 

---

 

Cass83

Awesome!!

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

Eldri....Great post!

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

Eldri, your post is spot on and timely!

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

I echo

Lori's sentiments.

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