Relatives and the holidays

I am straight forward with everyone...in fact I talk about it like one would if they had heart surgery etc. It seems when you say Bladder Cancer they start whispering, that makes me mad,thats the problem, nothing to whisper about.lay it out there,,explain procedures, and there effects, MY HUSBAND HAS A BAG, and it works fine, he has some problems with bowels and sex is an issue for now but we will be patient, and it will all work out.."Thats what I say" its something people need to know,,don't be afraid to voice your experience with those you are comfortable with!!!!Ginger

Greta,
I started using Caring Bridge early on so I wouldn't have to continue repeating myself but most of my posts were rather general. I agree with Wendy...most people, relatives and friends, really don't want too much detail. The ones who want the details are usually those who have an interest in medical treatment or who those who may consider themselves at risk. I have even been talking to my mother-in-law and have heard her spouse ask me to refrain from sharing the details.
Best suggestion is to use Caring Bridge....makes life easier unless you just hate to write. Take care, Melodie

Another thing you might try is to find an online place, like "Caringbridge.org" where you can post all the highlights...and tell them to sign up for new posts. Then, you don't have to do more than type once, and it's done.

We were amazed at how much that helped. Then, you can type in changes, and hit "post" and you're done. And then watch to see the number of people who have read all the posts.

Your hospital may have one already set up, or try the caringbridge. It is free, and easy to use. The only problem is that sometimes the post gets lost before it is added, so I always "copy" to clipboard before posting, and then if it's lost, I don't have to re-type.

Stephany in Iowa

Greta,

As a long term breast cancer survivor, I have always been amazed at how FEW things people and family really want to know. I have always been rather open about everything but when I would talk about my cancer experience, or my work with bladder cancer people, or any research etc, people's eyes glaze over and they start to twitch and look uncomfortable.

I've come to a place where I don't even tell folks about my scares anymore (and there were a few of them), as it didn't bring me support but rather the opposite, I would have to 'support' those who 'worry' about me!

I hope your friends and family are more inquisitive than mine...as I think it would be nice to actually be asked how I'm really doing once in a while and have them wait for a real response....'cuz no matter how much it's great to be in remission, we all know that cancer can come back when least expected. I would love to be able to say that it's a burden, or an ax over my head but nobody wants to hear me complain.

Wendy

Greta...i'm curious even tho not a relative....where are you in regard to your blc? Have you had a TURB and any treatments to date? Pat

Greta,
I just give them the facts. I state what has been done, what the doctor has told me, and what research I have found.
For what is going to happened next, again I do the same. What the doctor told me the next steps are, what test I will be going through, and possible treatments depending on the results of the test.
I felt like a broken record early on before I knew my whole situation (and a broken record since too).
Often I sent a "Rick on Rick" report to all my relatives and friends so I didn't have to repeat the same information over and over again.

I am glad that I kept everyone in the loop. I felt the power of their prayers and thoughts.

The best to you.

Rick