Keeping Friends/Family updated

Posted by jedikaiti @jedikaiti, Sep 2 1:08pm

Has anyone used CaringBridge or a similar site to keep people updated on progress? I have a FB messenger group that keeps quite a lot of my friends and family, but quite a few just don't use messenger, so I'm looking for an alternative.

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Yes, both my husband and I use Caring Bridge to keep our friends and family informed, and it’s wonderful! When he was going through his cancer surgery and treatments, I was able to post updates for him, but once he started writing the posts, he found them to be very therapeutic. Also, it allows people to leave comments or just “follow” your site so they get notified whenever a new post is made. I continue to use it 2 years after my AML diagnosis whenever an issue arises or when people start asking me how I’m doing. It’s so easy to use and benefits everyone!

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I don't use social media so I send an email out by checking all my contacts in my contacts list to be included and send an update. I always put a header line saying "Update (e.g.) old liver out new liver in". Then I open with "Hi everyone" so each person knows it is a group email.
Because I had been doing this since I moved from NC to AZ in 2019 and was updating everyone about the beauty and culture of my area, I already had friends eager for more updates.
Since my 5 month run at Mayo filled with radiation, chemo, surgeries and transplant I have diminshed the amount I discuss my health and have increased the appreciation of everyday events.
Also I always find a way to add some light hearted humor. E.g. in my "update of old liver out new liver in" I said "leaving the Mayo lot with a gently used liver and a Mercedes incision".
The updates have become so popular that I get phone calls and emails asking when will I update them again. The contact list has grown to five dozen eager friends and colleagues.
I hope this offers you an option for updating those who love and care for you, Barbara

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@jedikaiti I used Caring Bridge and thought it was great. I started posting prior to my transplant and then my husband updated right after my surgery when I was too out of it to do it. A few days later I was back to posting. In the early days it was great for him because he didn’t have to text everyone and respond to peoples texts. I took over several days after surgery. It was a way for me to express how I was feeling and to thank my donor. Also, when I was finally done needing it (long story) I opted to get a book printed of my Journey. I highly recommend it!

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@jedikaiti, It has been a while, and I want check in with you. Have decided to use Caring Bridge or another method for keeping friends and family updated. How is it going?
How are you getting along? Any update on progress toward transplant?

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@rosemarya, Thanks for asking! I did decide to go with CaringBridge, and need to send the link to a few more off-FB folks, but most family & friends have it by now. Now I just need to put together an "Answers to FAQs" post. 🙂

Doing good so far, pretty well settled in here in JAX, just playing the waiting game now.

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