All,

I can't thank you enough for your support and advice! I started a blog on Wordpress but only put one entry, so it's not very robust yet. I will also check out Caring Bridge as well. I do think that is the best approach to spread information without individually responding to every text and voicemail. Whew!

While I'm going through surgery and recovery, I'm going to refer everyone to my mother as she will be in town visiting me for two weeks. So, she can be my spokesperson for a bit. I hate to lay that on my husband as he's so busy with work and needs to be my PR for his family already.

Since I do have tongue cancer, I can easily use the excuse that I can't speak very well and point people to the blog..right? :-)

Thanks again for listening and providing advice,

Gina

Gina - Good for you! Sounds like you are taking charge and delegating what needs to be done. It's great that your mother will be with you. You might make a list of everyday things that need doing so that when people ask how they can help, you can hand them a list so they can pick what they feel comfortable doing (copy for your mother and husband so they can inform people, too). Stay close and let us know how you are doing.

Gina,

I referred everyone to my parents as well, who stayed for a month (god love 'em, but it was great when they went home). They were also the gate keeper of calls and filling people in. It worked for them as they felt like they were doing something for me, when otherwise they felt pretty helpless.

Be prepared for visitors in hospital. It was an interesting eye opener to see who came, and more interesting who didn't. I also had someone keep a list of who sent cards, flowers, dvd's books, etc., so I could send thank you cards later on.

I ultimately did a few posts, including some pictures, and commented that I appreciated all the well wishes, but I was quite tired and recuperating, so they would have to forgive any unreturned calls. It worked pretty well.

Good luck to you!

Oh, also, my best friend and I worked out a system of flash cards, so I didn't have to write everything down - cards with body parts and separate cards "sore" "itchy", etc. and then feeling cards: "tired" "frustrated" etc. It was helpful.

I do not have any family left to speak of but I have a few great friends & they know I am not interested in talking about mine or any ones cancer. They know I have no interest in health problems, maybe because I live in a seniors residence & the worse thing to ask here is "how are you" heck we have too many who have every ache & pain you can think of & will talk my ear off LOL. Most are extremely healthy BUT NO they do not think they are. True a 70 lady cleans the snow off my car & 11 other cars & says she is sick but up at 6AM she is cleaning snow off cars Do like me & change the subject, soon they all get the hint. Smile Gina because life is fun & others are funny. Bob

First, I wanted to say, thank you for this post and sharing your thoughts. My mom is currently receiving treatment and yet I can identify a lot of the things that everyone has mentioned.

And second, the system of flash cards is a brilliant idea! I'm going to work on that today for my mom. Thank you!

Gina, we've all been where you are, either as patient or caregiver. Keeping loved ones and friends informed is tricky. For me, in the early days, I simply couldn't talk about it without crying, not very effective. Later on, every resource we had (time and energy) was needed to make it through treatment. We were fortunate to have a survivor in our community urge us to set up a Caringbridge account very early on, and it proved to be a godsend. Some things to consider:

1. Privacy: My husband is still very much in the active phase of his career, he did not want just anyone (potential future employers) have access to the most personal details of his fight with cancer. It was a pain in the butt, but he asked that the account be set up with the highest level of security, which meant that anyone who would have access, we had to put in their email address, then invite them. Doesn't sound like much, but it was a pain at first. Once set up, very easy.

2. Site Author: I have felt very strongly all along that this is not my story to tell, but his. He has been the sole author on the site. It's been very theraputic for my husband, plus it's given me a very valuable window into his thinking through the worst of treatment. Several times, I saw him post things that I knew weren't accurate...in the thick of treatment, he just didn't process what the docs were telling him. But for the caringbridge journal, I'm not sure how I would have known some things he mistakenly believed. We got in the habit of him writing his journal entry, then me checking for accuracy (not content or style) before he posted.

3. Giving others a chance to help: We had a dear friend who took on the task early on of being the go-to person for getting hundreds of folks emails processed so they had access to the site, something I could not have managed in the whirlwind that was dx and beginning tx. Also, one of the great things about Caringbridge, there is a guestbook where loved ones can leave words of encouragement. Even now, 7 months into remission, we still get supportive messages from friends, means a lot to both of us. Our friends knew the last thing we wanted was every time we saw them to get "puppy dog eyes" and "how are you feeling". With the site, we feel the love, but still get to have normal conversations with our loved ones. For what it's worth, a number of our friends also wanted to do something, besides meals...it was easy for them to make a donation to Caringbridge, in Vince's honor...to keep a good thing going. Also, there were several times we had acute needs (i.e. ride for a child), Caringbridge gave us a ready made network of folks who were tuned in, wanting to help...we were able to quickly reach out and access that help.

For us, through the worst, Caringbridge was a real lifeline...still is as issues come up.

Best of luck to you and your family as you find your way through this maze, Ana