~If Ever We Are Too Sick To Visit The Board...

Believe51 · 09-24-2007, 12:08 PM

When I went away I came back to postings about where I was and believe me it touched my heart....but I was fortunate enough to be okay, just busy.

Well, Nicola is a fine example of how we get to know & love someone and when they are not here how it affects us. Since the end of August I have wondered what is going on with our dear Nicola. Luckily for us Kareng gained contact with her husband for an update. This has happened before with other members too who have had setbacks or depression. I will never forget how I missed Joy's posts and I wondered too, where is my girl??

MY MAIN REASON FOR THIS POST:
There are times when setbacks can keep us from the site and at the moment many of our members are in this category. If we are too fatigued or depressed or too sick to keep contact...

Could we assign someone in our lives to get on the site just to let us know?? Could you find someone you love to keep us posted on your journey?? We do not need a detailed update, just let us know you are in need of some special prayers. Or in Nicola's case with her liver numbers going up maybe we would have some form of an answer for the family....or maybe a link....or a question for the doctor.

Let's face it, this disease is bound to keep us away at times, if it was up to Ed writing to this group, you would have not heard from him for about 2 1/2 months now. It is alright to be away for a while girls, but when we are too ill I would like to see someone write or call someone. Maybe the one we love could get assigned ONE person to contact and they could keep us posted with our reasons. I know that cancer is a private disease and many may be reluctant to come here when we are depressed or very sick, but after all, that is what we are here for.

I LOVE YOU ALL AND HOPE THAT THE IS SOMETHING WE ALL COULD ARRANGE!!>>Believe51

lilyecuadorian · 09-24-2007, 12:16 PM

is a good idea ,....or if whe can leave our phone number on the profile so we can call if something happen ...for whatever reason more if we desapear for too long ....

hutchibk · 09-24-2007, 12:32 PM

I was thinking about this the other day, too. I wonder if we could all agree to a log that is kept by someone (webmaster?) that registers a phone #/email of a significant other, relative, friend, etc... so that there is back-up contact info in case we go missing... (another site I belong to lists all primary and alternate email addresses as: "joeblow _ at _ gmail.com" instead of the @symbol, so that trollers and phishers can't easily steal it).

Just a thought. Might not be feasible, but I think we can come up with an idea that could work.

Believe51 · 09-24-2007, 01:02 PM

I would do whatever I needed to keep track of these numbers if that is what I had to do. Let us keep pondering about how to do this because it is something we wished for before when Sandy was sick. I know Joe and Christine are busy right now but maybe he has some suggestions of the best way to do this.

I am not good with seperation anxiety...LOL!! As you feel too, this is our family and we need to stick together. Now I am off to PONDER!! LOL

Love you all>>Believe51

Becky · 09-24-2007, 05:14 PM

I share my private email address posted on the board with my husband. He knows how to contact the board and Joe. You are on my list of "Next of Kin" so they have to contact you guys. You never know when a bus has your name on it!

Andrea Barnett Budin · 09-24-2007, 05:40 PM

I am going to tell my husband Paul and my daughters to post for me if a bus hits me or anything that deters me from keeping close to my Sisters occurs. That is essential. A great idea. We all have that separation anxiety thing when our loved ones disappear for a while. Vacations aside. We worry. I always call my girls when my plane lands and vice versa. Just checking in. I wish you all safe journeys in Life, but know that we are thinking of you and we need to hear something (quick update) to allay our concerns when you seem to be missing from the landscape. Agreed? Yes, we need a more solid plan, but this has urged me to make my wishes clearly known to Paul, Alison and Pamela -- with my member name and password. So I'm covered. We all need to do this. For each other.

With much love...
Andi

weezie1053 · 09-24-2007, 08:20 PM

My work and my personal life has been pretty crazy since my grandson, who lives with me, started school. Haven't had much PC time. I saw mention of Nicola. A couple of weeks ago, I emailed her at AOL because I too was worried about her and did not get a response. Is she okay and doing better? She helped me through a medical concern, and I have been concerned about her due to her silence.

Louise

weezie1053 · 09-24-2007, 08:37 PM

I finally went through enough of the posts to find the update on Nicola. I too miss her and her cheery emails.

Louise

tousled1 · 09-25-2007, 12:52 AM

After being on this board for quite some time now I've noticed that when some women complete their treatments they no longer seem to need the support from this webiste and just move on. Others stay for support no matter what. It's very difficult when we correspond with each other and all of a sudden we hear nothing from someone. Sometimes it's just that the indiivdual has moved on and other times it's just that they don't have the strength to post. I know that I keep in personal contact with a few women from the board here as do others. I think all we can do in situations like this is to hope that someone on the board is in contact with a member in question or has a way to contact a family member. We must remember not to be too pushy as sometimes when someone is having a particualr difficult time they just want to be left alone for a while. We must thread lightly here and sort of just ride things out.

PinkGirl · 09-25-2007, 06:57 AM

Hi Tousled
Did you mean to say "thread lightly" or did you mean "tread lightly"? I think "thread lightly" is a great choice of words

- never heard that one before. I agree with you about not being too pushy if someone wants to lie low for awhile. But I'm like everyone else, wondering and worrying about Nicola. I didn't see a thread explaining how she is doing now. I will talk to my hubby about posting for me if I get hit by a bus or something !!!

Andrea Barnett Budin · 09-25-2007, 07:35 AM

I have sent an email to my husband and two daughters:

I intend to live to be at least 100. However...
I know this sounds silly, but it has come up on the HER2 site I am addicted to. We all post frequently and when a *Sister* disappears for a while from the landscape we worry. Some have vanished, though we keep posting and even sending emails. We each have one another's email address. Some have my home phone #. Like Marie who's husband Ed (in R.I.) has bc and is HER2+.

We have decided to ask our loved ones -- in case we get hit by a bus GOD FORBID A HUNDRED MILLION TIMES -- to post for us on the Herceptin site, so our comrades will know what is happening. If I were in the midst of a medical emergency, they are a fund of information on all things relating to breast cancer and beyond. They have advice, links, doctors names and #s, little known treatments and magic bullets for everything. I love them all and feel so connected to them. They are my fellow Warriors.

http://www.her2support.org/ -- is the site. Member name is listed as ANDREA BARNETT BUDIN. My Password is ******. You could post under my name and picture. People would recognize the post right off.

START A NEW THREAD titled UPDATE or something and leave whatever you feel appropriate for my Sisters to read. It will appear on the MESSAGE BOARD for the HER2 group, listed about 2 down from the top. These ladies have been supporting me for years and are full of wisdom, caring, strength and courage. They are all bc patients, of varying stages, all HER2+. They have all been through hell and have chosen to see their struggle and suffering as an opportunity to transform themselves, to heal themselves and to help people who find themselves in a similarly tragic situation. They're all SHEROES in my book.

JOE, at HER2 SUPPORT.ORG is the Webmaster. He and his wife Christine started this site when she was dx 8 yrs ago. You could contact him if need be.

I thank you for this... Andi Mom eternally...

This is what I did, just in case. Something to think about. I also have told them that I have HERCEPTIN under FAVORITES on my screen to get to the site.

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Andrea Barnett Budin · 09-25-2007, 07:45 AM

THE *SUBJECT* OF MY EMAIL TO PAUL, ALI AND PAMI IS:

MY TREASURED HER2 SITE.

I sent it to myself as well and it appears highlighted and unopened and saved forever on my computer.