I think everyone feels anxious, scared and alone too

Pam, I can definitely identify with what you posted. I do have a spouse sharing this experience with me and a son who is 21. However, they don't know what I'm going through.

The friends I have locally, don't know what this is like either.

There are times when I feel isolated, and as if I have noone to share thoughts with who really understands what I'm going through, because they've been there too.

That's probably why it was so great meeting some of the So CA listers at the Brunch last week-end. Here were women who knew what it was like to live with uncertainty, and health issues!

What helps somewhat with me, is I looked for a hobby that I enjoyed that I could pursue. Also joining a yoga class helped.

Ultimately, I don't know that we can ever erase that "alone" feeling, but knowing that others care about you can help.

I DO care Pam! Keep us posted about your news.

Esther -- Thank you so much for your reply & support. How does your 21 yr old react/handle things? My 24 yr old doesn't say much, I don't know how much he "gets" the seriousness, but he doesn't talk about it at least with me, so I don't know. My 28 year old, doesn't want to talk about it much either, but he's always very vigilant & overly worried at every little ache I have. I almost feel like I have to "perform" a feel great front for him, otherwise he'll drive me nuts. They're both very caring guys, but they can't be my support - they're my 'kids'.

I guess you are right that we who are living this will always be alone in it. I'm sure that why this site is so valued by so many people. I wish I could have more of this kind of connection with people. The get together in So. Cal. sounds like such a good opportunity. I live in Minneapolis & would love to have a get together here.

Just to give another percpective: the husbands, cargivers feel isolated, scared and sometimes filled with dread, not unlike what you are feeling. We have kids and I often wonder if they feel the same but I doubt it. Kids have a very effect means of escaping through their friends. Not that I would want them to feel the way I do because I don't neccessarily think it's healthy. What I do know, our healthy friends don't have a clue! And that not wanting to know I find translates into avoidance behaviour. Linda and I are lucky and we talked about it just yesterday, if we weren't close or able to talk, the isolation and fear would be unbearable, That why I agree that friendship is the key to keeping everyone mentally healthy enough to want to get physically better.
Those of you wanting to be in direct conversation with eachother, there is a very easy and free way through internet telephony. There is a program called SKYPE: go to www.skype.com Download the recent version and create your user identity. You need a microphone and speakers and you are all set. You then call (like on a telephone) a friend, whose identity you know and then you have it: free long distance perfectly legal.
Regards
Al

Your post touched my heart tonight. I felt I should at least I should give you my phone # if you want to call me. It is (207) 634-4921. I do live in Maine a ways acoss the continent from you however, I know some people use calling cards that are reasonable or have unlimited calling plans. If you need to talk to someone please feel free to call any time. I am up late most nights until 11:00. I am a board member of a BC organization and that is one of the things I do is support BC patients on the phone. I have some that call me at a drop of a hat telling me they don't know why they call and are really feeling down. We end the call laughing and then we both feel good. We do to lunch as some of them are local. I send them cards and when I feel led in my heart I call them. If this is not an option for you to call me send me your e-mail and we can e-mail off the board. I was in a situation the first year where I did not have the support of my husband and son. It was because they did not know what to say or do for me. I had some very good advice from a previous doctor who told me I had to go after them. I did and it worked. Its too much to write here but think about it. I will be praying for you and would love to hear from you. Take care of yourself, sending you BIG HUGS and BLESSINGS your way. Sandy H.

Pam
It would be nice if we could get a Midwest Survivors meeting like they did in California....I live in Illinois...I know of one in Michigan on the board....maybe it can be done!
We are in a special sisterhood together, not by choice but by fate.
Hugs
Sheila