It's only been a few days but it feels like it's been forever. Haven't been able to get to write and boy am I feeling empty. The support from online caregivers is immensely important. I'm sitting here waiting for the pulmonologist to call with test results so I can make arrangements with the surgeon for a consult to make arrangements for surgery before he goes on vacation - I really don't expect my husband to deal with all this. It's very painful for him. But it's awfully painful for me too. Waiting for bad news. Waiting for calls. Waiting for the insurance company. Oh, if only it all went smoothly and I could get all the work done without feeling there was something I didn't do - a feeling that constantly nags me. I am also a member of Gilda's Club and do journaling on their site. When I try to contact the other members of the community I belong to, they strangely have private profiles. I understand it, really, but it's very frustrating to want to talk to someone directly and share when they don't reply. I guess I'm feeling frustrated a lot. There are constant complaints coming at me and there's nothing I can do about it. I can't fix it. I'm not the surgeon. I can't say it will all be alright because my husband would know it might not be alright. This is the second go round for lung cancer surgery. The "Will you hate me if I don't have the surgery" questions and the "Remember I love you even if I jump out the window." This is really hard stuff to take. Especially when I know he's serious. I honestly feel surgery is the right thing to do here. I also know that physical therapy to build up his lung function after surgery is going to be very important and that I'm going to have to be on his case all the time not to be lazy and to do the work. What can I say. Like most caregivers, I have no one who I can expect to listen. I don't want to "dump" on everyone close to me because when I really need them, I don't want them to be worn out. This online community is the best place to be heard. It is definitely the best place to dump a lot of feelings. Just putting this all down makes me feel so much better. Ah well...on with the rest of the day.

Hi Apple Yellow,
Boy, did your story hit home for me, i related to it all and it brought me back when my fiance was diagnoised in 2008 with metastatic kidney cancer, end stage.. My heart goes out to you, as what you are doing today was me almost 3 years ago and as i think about it i don't know how i did all that i did.. I had to make out a daily list to use to get everything done, it was such a hectic sad time making all the app's, the surgery set up's, all the test that had to be done and so on and so on.. I also belong to an online kidney cancer group and i joined it in Sept 2008, so desperate to for support, i felt so all alone as my fiance wouldn't talk about any of it and we just lived without communication about his cancer for over a year..
I hope this gets easier for you as time goes on, and if you would ever like to know what the name of my support group is, i will let you know.. There is always someone to talk to and the the site covers ever cancer there is, and any kind of problem that anyone needs help in
Take care,
Ms Bella

Hello, I am a new member to CURE, my name is Joy or you can call me Simcha! Although my husband has been ill with lung cancer and bone cancer since September 2010. I am finally getting connected online! By the way, it is OK to spell cancer without a capital "C"! I have just started a website for cancer patients, families, and friends. It is Sunrise Support Group at Yahoogroups, listed under Health: Cancers. The complete name of our group is Sunrise Support Group for Cancer Patients, Families, and Friends. I hope to use a second website for Caregivers.

I have contacted the local Cancer Treatment Center to start a face-to-face support group in our area. They are aware of the need and are looking for someone to facilitate the group with the right credentials, however, they did indicate that I may be able to be a co-leader. There is a Cancer Support Group in Newport News, VA, about 30 miles away on the 4th Tuesday a month. (even though in my opinion there needs to be a place for patients to go at least once a week, if only to get out of the house). The doctor is here on Thursdays only. Anyway, there is going to be a speaker meeting on March 27th and two doctors are going to be speaking on Colorectal Cancer. I look forward to attending the meeting to "see how it's done".

I have had a support group online since 2004 for Adult Children of Alcoholics (ACA); we have approximately 180 members but we meed more group participation. Our parent group is Adult Children of Alcoholics, www.adultchildren.org. We are not affiliated with AA/Al-Anon so we are listed under addiction and recovery by Yahoogroups. The name of our group is Serenity ACA.

Please don't hesitate to contact me by e-mail or through one of the groups, including CURE, Remember, "You are not alone" and "The sun is up for you"!

God Bless You and Yours,

Joy

Wow. I posted here in 2009. Before the third surgery. Before the ablation and chemo and radiation and Steve's passing in March of 2011. But here's the good news!
I have begun, what will become, an international social network for caregivers. I found that there was such a need that it has become my life. I have hired a web master in Texas (I am in New York City) and a full time personal assistant who is helping me with content and getting around technology more than I can. It is: http;www.caregiversurvivalnetwork.com, and until we are totally up and running, you can reach us on our Facebook page or Twitter. You can sign up and I will keep you posted when our forums and open and closed chats are running. The site will be for surviving spouses and partners as well as those caregivers with patients in their care. It will be for caregivers for all illnesses, all sexes, childhood illness as well as Alzheimer's (which has great resources already), and anyone will be able to start their own thread.
I hope you will sign on. Let me know where you saw this note. Just trying to keep track of where people are finding us. And...they are finding us, even tho we're not fully up and running. The content is good.
((Hugs)) to all - Apple/Adrienne

Apple wrote:

I understand it, really, but it's very frustrating to want to talk to someone directly and share when they don't reply. I guess I'm feeling frustrated a lot. There are constant complaints coming at me and there's nothing I can do about it. I can't fix it. I'm not the surgeon. I can't say it will all be alright because my husband would know it might not be alright.

I sympathize with you; I know the feeling. I have started a support group at yahoo for caregivers. The original website is: Stuy Cancer Society, Stuyvesant, NY. The name of our group is Caregiver's Support Group. Our link is http://www.groups.yahoo.com/group/StuyCancerSociety
If you cannot find this link, go to Yahoo.com and try again!
I am thankful for having a place where I can go to share my feelings.
You are not alone,
~ Joy

MsBella wrote:

I also belong to an online kidney cancer group and i joined it in Sept 2008, so desperate to for support, i felt so all alone as my fiance wouldn't talk about any of it and we just lived without communication about his cancer for over a year..
I hope this gets easier for you as time goes on, and if you would ever like to know what the name of my support group is, i will let you know.. There is always someone to talk to and the the site covers ever cancer there is, and any kind of problem that anyone needs help in.

Ms Bella,

I understand how you feel; my husband is in hospice care but he doesn't want to share his feelings. He says that he doesn't have anything to talk about. His first wife died of cancer a year before we married but he has never talked about it. Unfortunately, he keeps it all inside. The ability to communicate with each other is very important. My strength comes from the Lord. Thanks for sharing.
You are not alone,
~ Joy