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Talking about your cancer and how you are treated

9 years 10 months ago #28539 by mmc
Great story Rick! Thanks for sharing that.

You have used your experience to inspire others. My hat is off to you!

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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9 years 10 months ago #28530 by RAH
Vi,
I was an open book to everyone. I felt comfortable sharing the details of the journey with Family, Friends and Co-Workers. I educated them on Bladder Cancer, the processes I would be going through, and the expectations as I discovered them.

Some people connection with me was as if I was the Discovery Channel and they would ask clarifications on all that I knew about what I was going through.

Others wanted to provide emotional and spiritual support and offered up their positive thoughts and prayers.

Others were great support to my wife and kids and were able to listen to them in a way I may not been able to provide.

What I found is that this made me comfortable around my family and friends and Co-Workers. I was not the Elephant in the room, but an inspiration to them. I was thanked by so many for including them in my journey.

I know I was thankful to them for their thoughts and prayers, and I told them so when they shared with me what they did on my behalf.

Two groups of people that I shared my journey openly with were two High School football teams. I was leaving one school to coach at another just when I found out I had cancer. Both groups of young men took the time to stop by often and tell me how much they cared about my healthy return. As I was going through Chemo and coaching games on the same days, these young men made sure that they took care of my needs (last week one of the players two years removed asked, “Hey coach, do you need me to get you the Barf Bucket before this game.” I let him know only if he didn’t perform at the level I expected of him).

After the season one of the players told me everything he ever knew about cancer was horrible. He had aunts and uncles and grandparents that battled their cancers and all he ever saw was despair. He told me, "Coach, you decided to live with your cancer. I mean not only are you fighting to stay alive, you are living life during your fight. You inspire me."

I am so glad I shared my journey from day one with those I know. It was a comfortable experience for me. And by the way, sometimes I needed that pitty party so I could share my love back to those around.

The best to you

Rick

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9 years 10 months ago #28524 by mmc
Vi,

I didn't tell anyone outside of close friends and family when I was first diagnosed. When I did tell people from work it was after my cancer came back and had become invasive and they thought it had spread to both of my kidneys. The kidneys part turned out to be a bad test.

People at work, when I did tell them were great. Many thought I was going to die pretty soon, but at the time so did I since I thought it had spread to both kidneys.

With low grade bladder cancer, the outcomes are extremely good if dealt with properly. I know I sound like a broken record--but that's why I keep harping on you about going to a cancer center to confirm your diagnosis so you can be sure you are getting the proper treatment.

With that said, low grade, non-invasive cancer is very, very treatable and many, many people never ever have a recurrence. It is something that is going to require monitoring for the rest of your life but the chances of nevery having a recurrence are excellent and even if you did have a recurrence, as long as it stays low grade recurrences, things will still be looking good.

People need to understand that bladder cancer is very treatable and that your treatment isn't the chemo that makes all your hair fall out and all that stuff.

I found most people to be truly interested when I explained my situation to them the first time I had CIS. It's high grade but very treatable. I had problems with the treatment so I wasn't really surprised when mine came back.

What you will often find is that people will look to you for cues about how they should react.

When I had my first diagnosis, I freaked out internally but didn't even let my wife know how freaked I was. Then, I did tons of research and asked lots of questions of people to learn as much as I could about the best way to get rid of the bladder cancer.

Even high grade bladder cancer is treatable and curable if caught early, staged correcty, and treated properly.

So, I was pretty confident when telling my grown children, my siblings and others that while I had bladder cancer it was not going to be the thing that killed me.

If you do the right things, you can also have that same level of confidence. And you will be justified in the confidence because you will be right.

:)

As good old Mr. Spock used to say on Star Trek:
Live Long and Prosper!

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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9 years 10 months ago #28520 by vgau
Now that I've told a few people about my cancer I'm trying to figure out a few things.

Did people treat you differently? I'm not sure if I want everyone to know because I don't want pity parties or for people to feel uncomfortable with me. Therefore, I'm also not sure about how to share the news sometimes. Close friends and family are one thing, but people I work with seem different.

Words of wisdom are needed.
Vi

Dx 10/5 Non Invasive Papillary

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