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Spreading the news


KatieB

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Most of us have a wider circle of family/friends that the people that live within our house.

Question:

How do you share news about your cancer, treatments, scans, etc... with your extended families? Or do you?

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I used to call everybody who was affected by my anxiety preceding the appointment and let them know what the results were. I figured it was only fair that since I made them suffer through with me, I should let them know as soon as I knew.

Now, after a long time, I've been able to control all of it so that it really isn't a big event anymore. I don't really let a lot of people know it's coming up, and I was so very proud of myself that I even worked for a few hours last year before leaving for my appointment. (If you know my history of not being able to work for TWO WEEKS leading up to an appointment for a scan or xray, you know how huge that felt to me!)

Again, though, that attitude comes after a long time of fear and extreme anxiety leading up to any test or appointment related to lung cancer. And a succession of good reports has helped make things easier to take-that's for darn sure.

Cindy

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Like Cindy, initially I used to call people, and many who were very aware of the pending scans would also call to check. Now I just don't say anything - except maybe here. I look healthy, and enough time has gone by, that most people (and I am including extended and some close family members) just kind of think things are OK and the cancer isn't the first thing they think of when they think of me. I like that to be honest. Most people will ask me how I am doing, and I just say I'm doing good -- and leave it at that. They no longer ask about scans, and I don't mention them. Helps me kind of keep things normal.

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Like the others, I used to call everyone after every scan. That got exhausting, so my sister took over. I would call my children, she would call or email the other family members. Now, it has been going on so long, I don't really feel the need to let anyone know whats going on anymore. I tell my kids when there is a major change in treatment, my sister does the same with my dad and other siblings, but besides that I don't really bring it up. If anyone asks, I am happy to tell them, but I don't initiate it.

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I know that Caringbridge and CarePages area a big help to many folks. We have a relationship with Caringbridge so you can utilize that for a great LUNGevity branded PRIVATE page. http://www.caringbridge.org/partner/lungevity/

While there can be some anonymity on this message board (don't post a pic and don't use your real name) some people find having a private page to blog to just your most inner circle of friends a liberating and cathartic thing to do while in treatment and among all of lifes changes.

You can also make a single post about your treatment and how you or your loved one is feeling and it goes out to everyone in your private circle.

This is a big help for those who don't have time to stop and call everyone- or even one person--because answering all thsoe questions and hearing concern in someone elses' voice can be heartbreaking and exhausting too.

I'm reminded of when our member, Sara, was going thru her time in hospice and she or her husband would post in their care page about how things were going. They wanted their privacy from calls and visitors--but being able to read what was going on their page and beign able to leave messages made us all feel close to them during that time.

SO, if you find yourself in a position where dealing with multiple family members and dynamics has you exhausted or if you're in a position of survivorship and you aren't sure anyone is keeping up to date on you anymore--consider starting a caring bridge page specific to your cancer journey and invite friends and family who are interested to follow along. They can get updates on you and read how you're doing. They can leave comments and messages for you and offer you any real-life support you might need.

http://www.caringbridge.org/partner/lungevity/

Keep posting your suggestions here. They will help others!

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