Small Cell Cervical Cancer

Hi Mona

Thank you very much for your reply and kind invitation.  It's good to hear you and others are being positive and doing so well, against all the quoted odds with this nasty brute of a disease!  I won't join you on facebook however.  I've avoided joining facebook for all the usual reasons... but I would gamble with facebook's privacy issues and join if I was up for having my decision changed.  At the moment my little cancer isn't giving me too much trouble compared to the ones I've been reading about on this thread.  It hasn't travelled far yet - remaining in the pelvic area and hassling the local lymph nodes.  Trouble is, it's leaning drunkenly against my bladder and the docs expect it to cause incontinence before very much longer.  The procedures they proposed to carry out on me were barbarous in the extreme in my view... and, as it turned out (though they didn't mention this small matter when persuading me to embark on their horrible course of treatments) the "cure" they planned was as likely to cause incontinence as prevent it.  I don't want to be incontinent.  I don't want to have my ureters dug out and brought to the surface of my abdomen to drain my kidneys into a bag.  I dare say if I was responsible for a family, I would endure the indignity for their sakes, but happily I have no such responsibilities, so there's nothing I can think of that would persuade me to go through with what they had planned for me.

Really, I just wanted to sign in and add my case to the list, more for the sake of more accurate statistics than seem to be currently available.  If it were left up to the NHS (who regularly lose patient records, scans and x-ray results etc, and seem incapable of devising a robust computer system or operating the inadequate one they have right now) to keep a meaningful database of all the patients, their conditions, treatments and short and long-term outcomes, there'd be nothing very meaningful to refer to (which, possibly not coincidentally, already seems to be the case).  I dare say my case history will disappear into the NHS's black hole once they're done with me... or will exist only in an edited version that "ticks all the boxes" as far as they're concerned.  Hope and belief are useful, but access to accurate data would make a good foundation to base your hope on.  I don't know if there's a better place to deposit this sort information.  Do you and your friends on facebook collect anything of the sort?  If so, I'd be happy to provide details of my disease/experience so far.

Kind regards

Sally

Dear Sally,

the group on Facebook is a closed page, and only the ones invited are alloved to read and share information. There have been other ladies on the page writing under an other name, because you need to have an FB-account and if you don´t want to be found by anyone you know on "your" page they wont recognize you. 

The FB-group is working with MD Anderson, and one of their doctors are a member of our group. We have been and still are collecting money for a project. This project is going to collect information from as many of us as possible, regarding treatment, ways to spread and outcome. You can read a little more of this at this page: http://www.facebook.com/SmallCellCC

this is an open page, and you don´t have to be a member to look at it.

Would you mind if I ask if one of the english-speaking girls contact you? I think they will be better to explain the whole idea better for you. I think it is so sad that you seems to be so alone in your situation, and I really want you to meet some of the other girls! There are even a couple of them living in the UK!

Please keep in touch!

Mona

Dear Mona

I notice that others have tried to display their email addresses in this thread and the moderators of the site have removed them.  So I'll attempt one of those private replies.  If I succeed, you'll be able to email me, but if I mess up and you don't receive it, perhaps you can post a message here to let me know and I'll try again.

Kind regards

Sally

Hi Sally! My name is Angela, Mona mentioned your story to me. How are you? Would love to get to know you better. I live in the US. I was diagnosed 2 1/2 years ago and am doing well. We have a sisterhood of about 90 or so ladies on the facebook group that all have amazing stories of hope and survival. It's a great group. As Mona mentioned, we have partnered with a doctor at MD Anderson in Houston, TX who is spear heading a research project for us. Let me know how I can help be of support or if you want any information on the group. We do have a couple ladies who joined Facebook under a different name (maiden name or using a middle name) for the privacy reasons you mentioned. If you would like to do that let me know and we can add you to the group that way. It's a private group, no one else can see the conversations except those who are in the group. :)

Much Love, Stay Strong!

Angela

Hi Angela

How nice of you to respond and invite me to your group!  I'm sorry I've taken so long to reply... meant to get right back to you but, what with one thing and another, it's taken a lot longer than I intended.  In reality, I tend to be a bit unrealistic about how long things will take me - body and mind so slow now and memory bad and getting worse.  Oh well.  As the saying goes, "you can't make an IS out of an OUGHT" - just have to deal with things as they are.

It's good to hear that you're doing well after 2.5 years!  And Mona seems to have planted the toe of her boot right in the seat of this rotten cancer.  From where I sit, your achievements seem nothing less than heroic!

One thing that I would like to ask (though I don't know how answerable the question is) is: how good is end of life pain control for this sort of condition.  A gent I know from my beekeeper association rang me the other day, to say his wife died at age 44 of something similar (though her cancer started in her lungs and travelled widely) and the pain control drugs eased her out gently.  I'd got the impression that pain control was limited pretty much to opiates that caused almost as much distress as the pain they were prescribed to stop.  I'm not sure who to believe.

As I mentioned to Mona, I'm not really comfortable with facebook - even though your group is closed, I wouldn't be able to join it without first joining facebook (an organisation I don't trust at all). Is it possible to join without giving  *any*  personal information (including a real name, past, present or middle)?

My love and best wishes

Sally

Dear Sally,

My name is Colleen and I am also one of the members of the group that Mona and Angela have been talking to you about.  You are right...their efforts in this battle have been nothing less than heroic.  I have been following your posts, but standing back on the sidelines.

First off, I wanted to let you know (and I know Angela will tell you the same) you can join facebook without personal information and use a false name.  It does require a valid email, which you can get a free one that you never use, from gmail to solve that problem. At that  point you can private message Angela and tell her who you are (so she knows) and she can add you to our group.  We have had others not use their name before.

I really hope we see you in the group.  When I was first diagnosed in 2006, I felt very alone and had no idea how I was going to make it through.  I became cancer free for two years following treatment.  It was during that time that I was s lucky to find another woman, suffering the same diagnosis as I. We  found each other here....no one else was posting really...and we became fast friends.  That friendship grew to a website we put up for women to find each other and as those numbers grew we moved to Facebook to more easily keep track of each other and stay in contact.  From there Angela made the girls the Facebook page we know and love today....and the rest is history. 

In 2009 I was so grateful to have this group of women as the cancer retuned.  After more treatment and a couple of surgeries I am now cancer free almost three years.  These women are warm,caring and understanding.  Whatever your choices are, they will be totally respected. I  think you would be an added pleasure to have in our group.  I hope you will re-consider dealing with FB. There are ways around it.

I will continue to  watch things here (if you don't mind  :) ) and what ever you decide I will understand.  But, I would like to stay in touch no matter what.  Take care and I hope to hear from you soon.

Colleen

Hi Mona, Angela and Colleen.

I've been persuaded by you kind ladies and joined facebook.  I'll private message you my pretend name;-)

Kind regards

Sally

Ok...got it.......Did you give it to Angela so she could add you to the group?  If not that's ok...I will give it to her to add you.  Good to have you with us...sorry there is even a need to know us.  xo

Hi Colleen, Angela is on it! We are all so eager on getting Sally in to the group that we are working around each other :-). Mona

LOL...I think it is great...whatever works....I am so happy you found her.  I usually don't butt in...but I wanted her to have the support regardless of what her decisions are.  xo