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Talking about your cancer and how you are treated

10 years 8 months ago #29573 by dukel
Dear Vi. This whole return thing I think is very hard for people who have not been there to understand. My first cancer I did a lot of that laying awake at night with the what IF.
I became very good at mind games in the dark to keep it out of my head. Someway or some how with time it faded away.
As for getting others to understand, I just never went there.
As for those who want to believe it is all good and over. I think that is for their own comfort. This time I have noticed that people often leave with a" glad your feeling better". Feeling better? I guess i missed that part! But i understand what they are trying to say and why.
Wishing you the very best!

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10 years 8 months ago #29569 by vgau
I think a new part of this for me is helping friends and family understand my concern with it coming back. Some that I have talked to really have a hard time understanding that it could show up somewhere else.

I have friends that heard I was all clear with my cysto check and assume that it is over. I haven't yet and don't even know if I want to say any more one way or another.

Dx 10/5 Non Invasive Papillary

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10 years 8 months ago #29566 by dukel
Boy i have had some experience on this subject.Each time i have handled it differently. I don't know that there is a wrong or right way. Two of the worst days of my life was telling my WIFE. This last time i made sure she was in the room with the DR. telling us both.
Sometimes times i,ve tried to hide it as long as possible, even from my children. I have had three tries and still not sure i got it right. I would only say that your mate and loved ones need to know,"if they can handle the stress".
As far as close friends; when it is convenient to tell them. The ones that want to be close and help will, the ones that it makes unconfortable will quietly stay away. To me both was okay. Some people just are not comfortable, it does not mean they care for you any more or less.
As far as tellings others, the most important person in this whole thing is yourself, and that is who you need to think of first.
To those who's spouse can"t handle talking about it, I can't even imagine. My WIFE has been my ROCK. She has always been there, to laugh, cry, and share with. To pushed when i needed pushed, to hold back when i needed held back, and always to love. We all need this!
My worst fear; could i do all this for her?
Wishing you the best.

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10 years 8 months ago #29440 by Nix
I will add my two cents. When first dx'd three years ago, (and even to this day) I have only told my family and good friends. I just did not want to be defined as "the one who has cancer".,
My husband and I moved to this area, 8 months before I was dx'd, so we did not have any good friends close by, but my support came from my husband (married 44 yrs next month) my family and my dear friends with lots of support over the telephone lines :laugh:
We live in a 55+ community, so cancer is mentioned more frequently than normally. However, I do hear people say, "you know John, the one that has cancer", and that is exactly what I don't want. Cancer will never define me, but I can say it has made my husband and I stronger.
I do share my BC with newly diagnosed cancers so they can see life goes on. I always say "this is not your grandparents cancer because it does not have a 100% death sentence." I personally know 5 women who are breast cancer survivors.
Although, we are anxious for quicker research (sep. with BC) there have been great strides have been made.
Because I was lucky enough to find this site - I am content with my good friends (even new ones I made in our community) and my famly - I am a Happy Camper :laugh: - Of course, until a week before my next cysto :woohoo:


Nancy S
dx Ta 11/06
dx Ta CIS 10/07

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10 years 8 months ago #29439 by vgau
I was surprised to see this post back again. So much has changed since I asked this question. I am less worried about talking to people or how they will treat me than I was at first.

My husband and I have gotten closer as well. I keep wondering if this will stay the same.

My newest thought on this is trying to make sure that I don't talk about it too much. What a change.

Dx 10/5 Non Invasive Papillary

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10 years 8 months ago #29428 by mmc
Hmmmm....perhaps it could be that love you very, very much and are scared more than anything about not being able to fix the cancer and even more scared about the thought of losing you.

Just a thought....

In my case, I used to joke it about it. Easier for me to deal with that way and I didn't want our home to be a tense place. Of course we both had our fears but I suppose I kept most of them to myself and most times I figured I would get better anyway since I learned about the treat-ability of bladder cancer.

When people would say things, I'd say something like "Sure, let's kick around the cancer boy." Doesn't look so funny in writing but I can tell you it most certainly was when I'd say it. Guess you had to be there.

Everyone deals with things differently and in the best way they can. Just like any other times the whole Men Are From Mars; Women Are From Venus thing comes up.

Can't say how many times I've said to my wife "If you want me to think and act like a woman, then maybe you should have married a woman." We're wired differently so we react differently and think differently. We tend to be direct so we tend not to understand when a woman drops 4000 hints about something. Obviously, there are a host of other examples. If you don't want us to fix a problem, don't tell us... If you want us to do something, ask us... etc.


By the way, during the course of my dealing with bladder cancer and having the RC surgery and the follow on issues, my wife and I have become so much closer together and fallen more deeply in love than ever before. And ever before wasn't just small potatoes either so that's really saying something.

She was there for me, took care of me, thought about life without me, made sure the nurses in the hospital did their jobs properly (she's a nurse so she knows), any many other things.

Knowing how much you are loved can certainly make a big difference in your life. Some people don't always say it and they don't always know how to act they way we hope they will, but hopefully they do.

Tell them what you need from them and ask them if they can. If they can't, they may have a very good reason that just isn't apparent.


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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