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How to tell others....one person\'s method.

8 years 3 months ago #33898 by vgau
I'm sure everyone remembers the day they learned about BC and I was lucky because I found this site early on and had so much support and read all that I could from old posts.

One of my early posts here was about how you tell people and how or if they treat you differently. That was one of my biggest concerns. I think I had a different perspective because I was at the very end of my time with my mother who died a couple of months later from cancer. My worry about people treating me like an invalid kept me from sharing with people for a while.

I have shared this in stages. My immediate family was all very different and I have followed their lead about how much we talk about this.

Work has been more difficult. Teaching 7th graders, I know I don't want them to know so I slowly shared this one on one with people at work.

I have been amazed at the support I have and know that it is the ability to share things with others that are dealing with the same that has given me the knowledge needed to have the strength to deal.

Again, I was lucky to find this site and it is good to know that I have people to ask when I am dealing with anything.

Dx 10/5 Non Invasive Papillary

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8 years 3 months ago #33850 by GKLINE
My only regret was finding this website AFTER I had already gone through 2 TURBT and The RC. I got through this all by following the advice of my GP.

The changes in life, that cancer puts you through are amazing. I found the need to speak to people like me who have bladder cancer and don't know what to do and are scared. I was lucky to have great people around me that kept my head up and pushed me forward. One good friend even made plans to fly me to MD Anderson. WOW!

I sound like I came out fighting, but I was so clueless about cancer, that I followed my natural instinct. I hate cancer and I was not going to let it take me without a thrashing. Coming to this site gave me an outlet for the pent up need to talk about it.

I had no idea how serious this was until my GP came to visit me the day before my surgery. He said he was NOT a religious man. But, if I was, This would be a good time to say a prayer. Up until that point, I was just thinking I was superman and this cancer thing was just a small bump in the road.

Boy was I slightly off. :unsure: :unsure:

George

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]

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8 years 3 months ago #33781 by sara.anne
Everyone reacts differently....some people (like Mike and George) come out fighting and some need to hide awhile and lick their wounds and assimilate the information. However, once I got over the shock, I became an ADVOCATE!! Feel that the more people understand and know about something, the more likely they are to pay attention if it, or something similar, should happen to them.

Therefore, practically everyone I know does know about it, and it has become something that is no longer frightening or even a topic of conversation.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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8 years 3 months ago - 8 years 3 months ago #33769 by mmc
Thanks George. Glad that you posted your story also. Reading back through those email messages made me think back to how important this site was to me back then and how much I learned from people here.

It also made me realize that cancer works a bit like alcohol in terms of making one rather philosophical. Makes sense though because it makes you think about what your philosophy is and how your going to follow it.

With cancer you just don't slur your words as much! :)

I also realized that I have learned a lot since those days.

The first time I got bladder cancer, it was CIS and non-invasive. I was working for myself then doing consulting so it was just telling family but that was pretty easy because I knew how treatable it was (from the people on this site when it was on the webcafe). Once it was invasive, it took on a whole different feel, especially since my uro told me it had gone to both of my kidneys.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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8 years 3 months ago #33766 by GKLINE
Mike
This is a great post for the newly diagnosed category. The similarities between your communication and mine are eerie. We didn't want to talk too much about it, but, trying to hide it was only going to feed the rumor mill with even worse fodder.

There are no miracles. This is not a death sentence. This is NOTHING to be ashamed about. This is the time when you really need friends and family around for support and positive attitude. Nothing helps as well as talking about it with people who care about you.

George

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]

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8 years 3 months ago #33765 by GKLINE
I remember the "Telling the Story" period. It was, at times, an easy conversation, and others, a huge soul baring session.

When we returned from the Urologist, we were too stunned to tell anyone for a while. Telling the kids(grown) was "interesting." They view cancer differently than older adults. Even though they were concerned, they did not have the attitude that I was handed a death sentence. The girls were very confident that modern medicine was going to take care of this.

When I told my older father and mother, it was another story completely. As I said the word cancer, my dad just kind of slumped in his chair. He was sure I was not going to survive cancer. So few did in his day. Cancer was a death sentence years ago. I ended up reassuring him that I was going to be OK. I also stopped giving him a Play by Play of my treatments. I was afraid that too much information would cause him to worry too much. My mother suffers from Alzheimers and each 10 minutes is a new experience for her. I also didn't need to add the cancer burden to my dad's already stressful life as a caregiver.

The next group to be told was my dealership staff. I just flat out gathered everyone together and told them as a group. I asked that they work professionally and cover for me. My shortest term employee has been with us for 7 years, so we are family. Everyone, and I mean Everyone, pitched in and put aside petty differences to keep the place humming as usual. After Surgery, my wife visited the Dealership and met with everyone again. She said the support was palpable. Even the tough mechanics were concerned.

The final group was friends and community members. I live in a small town and everyone knows everyone. I decided NOT to keep this a secret. I was afraid if the rumor mill got working, it would say "He's got cancer, He's dead"
I spoke with everyone I came in contact with about it. I would quickly put their concerns at ease. I was so sure that I would beat this, I convinced them. Word got around that I was going to be fine. I soon became a "go to guy" when someone wanted to talk about cancer(friend, family, or themselves). The interesting thing was the people who came to me looking for a positive side to their cancer concerns. Some thought I had cancer "lite" because I kept telling them I was going to be OK. I did NOT show anyone my scar!

One year after my RC, I had a hip replacement. I kept the same attitude going.

Some people think I had a ton of crap thrown on top of me, and life treated me unfairly. I tell them "This IS Life" I am NOT a NASCAR fan, but I took a phrase from one of the teams..... I Refuse To Lose!

One last thing. I had some shirttail friends that came rushing to my side wanting to help or just "be there" I also had very good friends who suddenly "couldn't handle it" and stayed away. There are many ways that people deal with cancer and cancer patients. They are still your friends either way.

It appears as though how "the news" is broadcast, has as many variants as the weather. You just have to know what is right for you!

George

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]

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