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Sharing dx/tx information


KatieB

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Some of you have children, siblings, parents, and extended family and friends....when and how did you decide to share information about your diagnosis and subsequent treatment?

I know one survivor who sat down and had one "big and basic" conversation and then left the family updated to his caregiver (who chose to use a CaringBridge page for updates)

But how do you do it and what would you have done differently? Do you share each miles stone/scan result or is no knews considered good news in your circle?

Share and lets help others who are new navigate this new normal they find themselves in.

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In 2003 when my mom was diagnosed before social media I made calls. I could barely speak. Then I generated an email list and updated with emails all the time to those who wanted to be on list.

I did email when my dad was diagnosed in 2005

When we got the shocking news about my mom in february that it came back and was bad i did not make ANY calls except to my uncle. I could not speak. It was selfish but I used Facebook to alert. After awhile I set up cAring bridge and let people follow.

I say it was selfish to use Facebook bc people who loved my mom could have been anywhere when they got the news but that is how I had to handle it

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For my first dx the doctors had pronounced me "cured" so it was not an issue with friends or family. The second dx was different of course. There was no FB (and honestly I wouldn't have used it for that even if there had been). My husband called everyone in the family, and I had lunch with my friends - one-on-one - and told them. Acquaintances just sort of heard through the grapevine. To my face they were all very positive, but I could tell that some figured "this was it" because after all it was my second dx In my case, after treatment I was considered stable and that's what I told everyone. Then I had scans every 3 months, and at first the phone would ring off the hook when it was scan time with everyone wanting to know how it had turned out. So far I've been blessed with continued stable scans. At this point (4 years next month), many of them don't even remember to ask. I think I look well, and barring any negative information coming from me, they now just assume things are fine. It's a little odd -- they know I still have cancer - but nothing is happening and hasn't been so I think it all just falls farther into the background, and at least where my children are concerned I think they assume this is just going to go on indefinitely. I used to worry about them being in denial - but I don't think they are, they are just living with the present situation. When something does happens, we will all deal with it then.

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  • 2 weeks later...

I'm the spouse/primary caregiver, and I find this topic of communication pertinent and interesting.

My wife, the patient, prefers to delegate most of the communication to me, though there are some cases where she will use text messages. She is not a huge fan of online media, and that certainly plays into her views here.

At the initial diagnosis, I made phone calls to close family members - our mothers, siblings, and of course our two children. I asked some of them to convey the initial message to some other extended family members. For many friends, I next reached out via email or text messages and conveyed the news. My wife was hospitalized for 10 days at the outset because of a blood clot (the exposing symptom) and was not deeply involved at that point, and she was glad to delegate the communication duties to me (and I was perfectly fine to take them on).

Within two weeks the volume of phone calls and texts became nearly overwhelming, and we decided to leverage digital channels. We decided against a web site like caringbridge because of privacy concerns, because it is an open site (isn't it?), and because with email we can manage initial recipients and when they receive it - and they will also know immediately when new updates are available as opposed to having to check a web site. We feel that email also allows responses that are more meaningful because they are private, as opposed to others posting their support on a web site where all can see. Not using a web site was a trade off, we recognize, but our privacy and that of supporters took precedence. I suspect the willingness to post comments publicly may be a generational thing, as I observe many persons born in the 1980s or later seem more willing to post openly (we were both born in 1961), though I can't prove that.

We are now 2+ months into this journey, and for updates and new information, I send out a weekly prayer circle email to around 130 persons. This list grows slowly because now most family and friends are on the list. I use a blind copy when sending so that recipients cannot see one another's email addresses. Again, a trade off because they don't know who else is receiving the message, but we'd rather default to respecting their email privacy. There are still some elderly family members who do not use email (such as our mothers in their 80s) so I must make phone calls, which we would normally do anyway. The email means of communication allows us to reach a large audience quickly and easily. My wife, the patient, prefers to not receive all of the supporter email responses directly, because she enjoys having me read them to her at times she is feeling down or in need of some cheer. For many weeks we would sit together each evening and I'd read aloud the emailed responses and prayers.

My wife periodically sends text messages to a small group of family and friends, though this is sporadic and she does not want to feel an obligation to send information on a certain regular basis, and also does not want to be overwhelmed with "how are you doing" inquiries. Some patients might welcome inquiries, some may not. My wife also receives lots of snail mail from the postal service, and she will in turn send cards and letters of thanks and gratitude to some supporters.

So, bottom line in terms of communication channels: we use email to the largest extent, an infrequent volume of text messages, a lesser volume of phone calls, and a limited amount of snail mail. We do not use a web site/page or Twitter.

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