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Faces of True Courage – Psycology Today
http://www.psychologytoday.com/blog/time-out/201008/faces-true-courage
The stories of women with bladder cancer particularly need to be heard.
You see, urology is mostly a male specialty, and most of the patients who come to see urologists are older men undergoing screening for treatment of prostate problems.
My humble opinion in response to this quote from the article is B*LLSH*T!!!
I actually got angry because of this and I’m not one to get angry much.
Bladder cancer sucks big time for men and women. Let’s not make this one about what sex one is. It shouldn’t be. Men and women need to know the symptoms and need to not take know for an answer when seeking a referral to a urologist. I know outcomes are statistically worse for women than they are for men but let’s work together to fix that through sites like this and other means of communication. NOT through making this a woman’s thing or a men’s thing.
Getting off my soapbox now.
From the title of the article “Faces of True Courage”….
Exactly what “courage” is required? You go to the doc, you get diagnosed, you do everything you need to do to get cured.Is it just me? I never, ever even thought of things like courage or cowardice when it came to getting treated for bladder cancer. It’s a matter of finding the best doctors and getting the best treatment.
Maybe I’m just having an off day but this article pissed me off. “Don’t piss me off, I beat bladder cancer!”
I salute those who were interviewed for the story but I do not care for the way the author spun the story.
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 system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.21 Replies-
Mike having watched what goes on here is sometimes amazing. Someone is so scared when they first get here and then in time they become the ones helping. Most get past it in time and move along but some stay because it becomes a calling. They know that knowledge is lifesaving is bladder cancer and by staying they pass that on. And it does not matter if those in need are a homeless person in a public library or a king in a palace they are all the same here. I better stop or the people that criticize us will start to think a good thing is going on here.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
Cynthia,
Wow! I didn’t realize how much collateral damage happened or how much people write on the side.
Just so other folks know, everything I post is my opinion and mine alone. If I offer suggestions on courses of action or treatment, it is a personal opinion and not a medical opinion.
I am just a person who signs on this website quite frequently and someone who had bladder cancer up until Oct 2008 (and hopefully won’t be having it come back since my RC).
The reason I come here and post is because I found great value in the opinions, experiences, and advice that so many here gave me both times I had to deal with bladder cancer and I wanted to contribute to others as they come to this site.
I do not represent the ABLCS or any other entity other than myself. Although, if you do find something worthwhile in something I’ve posted, please feel free to reward the ABLCS for providing a forum where people can come together to exchange ideas and share information.
SO….if anybody has an issue with anything I post, please send me a private message or post your response. Please don’t bother the folks in the ABLCS with it if it can be avoiced as they are a great bunch of folks who are doing great things and it would be better for all of us if we gave them the time and any assistance to focus their good works elsewhere.
Thanks!
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 system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Mike I tried very hard to not beat up on anyone as I understand where everyone was coming from. And it had been duly noted that you like the wise man you are had tried to hold up the white flag in every way you knew how. You have every right to voice your opinion and in a normal situation I would love to debate with you on your stance on male vs. female differences in bladder cancer and I think it would be a good thing as sharing ideas is never a bad thing.
But quite honestly this whole thing was not about male vs. female or courage in cancer it was about advocacy work and frustration. We are working very hard to get the word out and we do not have the money to do it the easy way. We have to beg for every word and work to build relationships and those relationships may lead to the next article or an introduction to someone who could help us in another way. Often what is written is not what we would have written but we are grateful for every word and politically it is not in our best interest to debate the point. Every article is not about that article it is about raising awareness and the next article. Maybe our response was not well worded or was too strong but that is where it comes from.
Personally I can tell you it is a fact that I get three complaints for every word of praise and that wears on you at times. I am not a saint and I am working on letting things slide but I have been called dirty names in more than one language, had a curse put on me and told that at least one person hopes my cancer spreads and I die a long and painful death. If I quit every time someone upset me this organization would never have gotten off the paper the plan was written on. I don’t get paid for the work I do nor does the rest our of advocates, the ABLC is not a subsidiary of the ACS as some think with money running out of our ears every penny is hard to come by and much of it comes out of our own pocket. Just because they don’t post here does not mean that they are not working to keep all this going. We don’t expect thank you we do what we do because it is important just as you all are in your own way. But we are human and I can understand frustration and how much you just want others to understand the bigger picture and that we cannot let simple difference of opinion take us off course.
This is a case in point……. People got frustrated and hurt. I have to take the time to field emails from people in support of Pat being upset. And I or someone will have to step into the void her not being here creates until other step up, that is time that we could have spent doing advocacy work, words can do harm even when they are just misunderstood. I always spend a good bit of time fielding emails, some are upset that they feel they are being pushed too much to get a second opinion, others that they feel someone is playing a doctor on the internet without a license or that someone from anther organization is sending them private messages trying to get them to leave and use anther website, or that we are not getting as much done as another organization…………sigh When you are dealing with the general public, some under a great deal of stress there will always be issues but we need to lock arms around the cause and try to over look our differences and go forward. This is not about competition between organizations, misspoken words or whose work is the most important it is about people’s lives. The bottom line is we all want the same thing, we may not be perfect about it but we are learning and we keep trying.
We all have our jobs and the people that keep this forum going are very important. As important as all our other work is this is where my heart is it reminds me why we are doing what we do and that keeps me going forward I need this forum as much as anyone else. But without all of us none of this works and I can only hope that hurt feelings will fade and the importance of the mission will take over again.
PS: Lee I am with your wife it always makes me feel uncomfortable when someone tells me how brave I am when all I am trying to do is stay alive it has nothing to do with courage it has to do with survival.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
Mike,
Just one note about courage and this is from my wife who was just diagnosed with Non Hodgkins Lymphoma and is now undergoing treatment. She said when she told people at work what was going on with her,they said she was told she was very courageous to face this. She told them and me that she thought there is no courage involved because if she didn’t do this she would die so she had no real choice.
Can’t argue with the logic
Lee
Great post Cynthia.
I don’t know about everyone else but I know I have moved on from this and I think that I conceded about three hundred different ways from what my original post was.
I have to go back to the blackboard now and continue writing 100 times “I will never make a comment about anything specific to women out loud again or in writing again.”
One would think after 31 years of marriage I would have known better! :)
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 system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
While my husband and I tried to take a few days away from our work I have been following this thread. And after giving it some thought I decided to not step in and took a watch and see stance then it took a while to decide how to respond.
We are a community, a family and anyone who has ever been to a big family dinner will tell you not everyone sees eye to eye. But they are family and have a commonality that binds them. This site is about one thing, providing help and support to others that have been in our boat, hoping that what we do will make it a little easier for others that come after us.
When I took over this forum when it moved from the Web Café it did not take long before there was trouble and I already knew that fighting could destroy a forum. I have received a lot of criticism for doing what I felt was the best thing for this forum. I have even been told that some have left the forum because it isn’t as much fun to read since we no longer allow out and out feuding. However there is nothing wrong with not seeing eye to eye and voicing an opinion. We all have to never lose focus that none of us have anything other than the right reason for being here. We don’t have to agree we just have to agree that we have bigger issues here than any one of us or our opinions.
If you really think that we would intentionally do anything on this site that would create division please read our founding principal.
http://www.bladdercancersupport.org/index.php?option=com_content&view=article&id=1&Itemid=87
The fact is that this is one place that it does not matter if you are a purple striped Martian who worships the three toed god Loony you are welcome here as long as you are in need and respect others in other words we are all equal and of value. And I would be surprised if anyone could ever come up with one incident that would indicate otherwise. And I would like to think that our community is stronger than one article.
I know all the individuals who posted and all of them are to be respected for their work in bladder cancer advocacy, they are just coming at it from different perspectives. It is going to take a lot of us with a lot of different skill sets to get the job done. The ABLCS (pronounced abliss by the way) has many jobs as of this minute we have over 38 different projects somewhere in the pipeline, and not everyone is doing the same job so their priorities and opinions are set by what they are doing. This is pretty impressive when you take into account that none of us are paid the only people paid are technical or professional in nature. Sylvia knows how important this forum is and she has worked very hard to make sure the money is there to make it happen as well of having spent hours talking to me about how to make it better. What she meant was that this site alone will not get the word out by itself the ABLCS has to be more than this website as important as it is, it is only a part of what we must do.
We are not a wealthy organization we are only two years old and growing plus we started business at the worst time since the great depression and we do not have the money to do a major national awareness campaign. And until we do we feel in a race to get the word out because every day someone potentially could die from ignorance. Added to the lack of resources we are dealing with an information pipeline that does not embrace our cause readily. We have been told by the marketing pros that we need a hook that our cause is not about subject matter that rings the media’s bell. We have had to find creative ways to get attention for the cause and we are getting better at it but we cannot control what they wish to write about. To tell you the truth I don’t care what the article is about as long as it is factual and informs one person we have won.
George said we have gotten too politically correct around here and maybe is right. So if you want straight talk I will go first.
I feel sometimes we are standing at a cross roads arguing not where we need to go but how we are going to get there. What we need is troops on the ground, resources and our eyes on our goal. If you do not think we are going in the right direction you are welcome to be a part of this if you have a skill or know someone who can help let us know. If you can give ten dollars a month to the cause please do or encourage a fundraiser in your home town it helps us keep afloat and get the word out. It is time to lead, follow or get out of the way the ABLCS cannot stop it is 2010 and for the first time in history bladder cancer is just starting to be noticed. We need the people who post to the forum as well as people working in other areas to get this done, we are all important to our mission, we can’t take our eye off the ball for any reason the stakes are too high.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
I am getting close to the 1 year mark with bladder cancer and I can say that the people at this site are responsible for giving me the information I needed since the internet can be so overwhelming and confusing. They were also there for the emotional support I needed when I was clueless and having a normal reaction to the word cancer. I am stronger because of everyone here.
I’ve said it before and the knowledge here and the people they help is unmeasurable.
I can see Mike’s point of view as he feels so strongly about helping everyone and wants to see that in the media as well. I said before that every bit of news leads to more knowledge and growth from that. I can also see the passion in other posts about their feelings of what is needed or what they do for the cause. There is no wrong in any of these opinions.
Every little bit helps, but I also know that feelings can cause problems that never should happen. I have made mistakes in how I said things and people were able to see beyond that know the really important thing is to support me and I will always appreciate that.
Dx 10/5 Non Invasive Papillary
This discussion is great! In many ways we have kept the gloves on when we express an opinion here. We can be very pc.
But, lets remember who the enemy is; bladder cancer (small letters… never going to give this enemy any respect)
There is one thing I agree with Mike about. Let’s NOT turn this into a sexist thing, or a racist, or a lifestyle thing. The enemy is not concerned with any of these things, so we cannot let the enemy divide us. cancer does not care if we are male or female, black or white, Catholic or Muslim, Gay or Straight.
I also agree that ANY publicity is Great Publicity as long as they attack cancer and inform the people that this is a Curable cancer if found early. The new media needs to have an “agenda” to make the “story” interesting. If P.S Today needs to use gender as an agenda, I’m all for it. As long as it advances the cause.
I do know that there are differences between male and female treatments and we should have a “flow chart” to show how each one can be survived.
Keep this discussion going. All is fair to say. We CAN disagree, but please be courteous. Keep on speaking your mind, let it all out!
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]
Those who read this discussion, please don’t take it out of context. The forums and the chat room are great. I was not knocking them at all. They are needed for those who have been diagnosed and for the caregivers. I was saying that if we want to save lives…which we can by more people knowing about this cancer, the symptoms…it will take a lot of effort on our part. That effort must reach beyond this site.
There are common things that both sexes face with this disease, and there are some big differences as well. Finally, a research project tried to identify why a female is four times more likely to die for this cancer. The results showed that there is more than just the fact that there is more frequency of late diagnosis in females. This is an area that needs to be investigated to find out what these differences are, and how to reduce the rate of mortality. There is research that has addresses the male sexuality issues resulting from bladder cancer. However, I have yet to find any that address these same issues for females that result from this cancer. Addressing the female aspect of bladder cancer doesn’t take away from the current knowledge about this disease, it only adds to it. Nothing I have said was a personal attack on anyone, but a response to a typical mindset when it comes to going beyond the current mindset in medical research field. I know it is there, I have faced that mindset in roundtable discussions at research conferences. Hopefully, we share a common goal as bladder cancer advocates, and that is going beyond giving support to those who are here (that is very valuable)…but to strive to bring about awareness that will increase research and knowledge of the disease so that fewer lives are lost to this cancer.
Sylvia L. Ramseyi will be on vacation for a bit..i think the canadians need some help.
pat
…and by the way Pat’s my hero.
…and thanks for the nice things you said Sara Anne. You also contribute a great deal here along with many others.
…and also after reading all the things that Sylvia does, she is my hero also.
…and Cynthia, and Julie, and George, and Jim, and Sailorman, and Webs, Betsie May, Ann, Anne, you and….
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 system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Yup! I’m cooled down AND I understand Sylvia’s points.
I even went back to the magazine article and added comments to apologize if my opinion offended anybody. I still defend my right to have an opinion and everyone else to have theirs but I certainly don’t want to create angst or anxiety for any bladder cancer colleague.
The folks who would have been bothered by my response would most likey have been women who have or had bladder cancer. I don’t want to offend anybody that has or had bladder cancer.
My whole point was we’re in it together. Let’s not split into teams or factions.
The only ones I want to create angst and anxiety for are the ones who won’t get to the best doctor they can find that is a specialist in bladder cancer or think they can cure existing cancer by eating broccoli or burning incense or hanging crystals around the house. I want to create angst in them so they will cave in and get the best care possible with the highest chance of success.
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 system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Cool down time!!!
Sometimes something just hits us wrong. I think that happened to Mike when he read the article, and to Sylvia when she read Mike’s response.’
The important thing is that BLADDER CANCER (sorry, Mike, I capitalized it) is what is hitting us.
Sylvia, Mike has been one of the most valuable members of the Forum. In addition to developing his “flow chart” of the bladder cancer journey, he is one of the most active and effective advocates for newly diagnosed members, especially those facing cystectomy. Between him and Pat, all of us receive valuable counseling and advice.
Mike, I want to be like you when I grow up!!
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum ModeratorWhoa Sylvia,
Just interacting on the forums? You find no value in that. This isn’t Facebook. Its a very informative Forum with some of the best research and advise going in the world of bladder cancer. I guess my 7 yrs of research and interaction on the forum doesn’t count for much. Read it sometime.
Now i’m feeling like a non entity
Besides i like standing up to pee
pat
OK. You win.
I apologize that my opinion caused you offense. It was not my intent but I do understand your position.
You are absolutely entitled to your opinion and my hat is off to you for all of the things that you do. You clearly do a tremendous amount of work and I am one of those that truly does appreciate that as I’m sure many others do as well.
At the same time, I feel that I am equally entitled to my opinion.
I too have to wait for a stall to urinate because I must catheterize myself every time I go. Then I try to discretely wash my catheter as the restrooms I am using are often those in the office facilities of my clients.
I understand that it is embarassing for women in the standing situation.
My point was that rather than focussing on differences, my opinion was to focus more on the commonality. I didn’t see Psycology today as a women’s magazine so I thought a more gender neutral article would be appropriate to the audience.
If it had been a strictly female targeted magazine, I would have not had the same initial reaction. Actually, now that others commented on my original post, I do see the value in any publicity being better than none.
I participate in this forum to try to help people when I can. I work full time in a job that requires travel every week and long hours during the week but I try to keep an eye on the forum.
I also talk to patients of my doctor and others that I’ve met on this and other forums to help them get their arms around bladder cancer and cystectomy.
The only reason I am listing other things I do in my response to message is that it seemed as though you were implying since I only participate in forums my opinion somehow counts less. If that’s not what you meant, then other things I do aren’t really relevant to the conversation.
I don’t consider myself to be in a contest with you or anybody else with regard to what I do or don’t do concerning bladder cancer.
I don’t see how my comments on the article in any way lessen the contributions you make.
My belief is that you make those contributions because you are a person that has dealt with bladder cancer, not because you are a woman that has dealt with bladder cancer. You may see it differently and that’s ok.
I understand your position on courage. For me personally, I don’t feel that I exhibited courage or lack thereof when I was diagnosed with bladder cancer. Since my parents, grandparents, and great grandparents all died of one sort of cancer or another, I always figured it was inevitable that I would one day get some sort of cancer. I seem to be the first I know of in my family line that got bladder cancer though. For me (again this just applies to me) I was have always tried to live by the motto “Live like you’re dying” since my parents died. Saw my parents save and save and put off doing a lot of fun things and travel. Then my mom died at 47 years old and when my dad later remarried, they traveled all over the place.
I learned from that and had a whole different view with regard to the balance of saving and living. I’ve lived in multiple countries around the world and can honestly say when I considered that I might (still could) die from bladder cancer, I have an empty bucket list. I’ve scuba dived, sky dived, traveling, lived, loved, raised two great kids who now have kids of their own and now have a job that I travel every week but come home every week so I can see my kids and grandkids.
So do I feel brave for going to get treatment. No, not me. I just went and did what needed to be done. Got all my things in order prior to my surgery so if something went wrong my wife was taken care of and knew what to do and where everything was.
Again, this is just me. If you feel it took courage for you to get where you are today, then it did–for you. I’m sure many others think so as well and that’s fine for them. I’m not sure if a debate on whether or not it takes courage to BCG treatments, or a cystectomy, or chemo, or whatever else would really add any value. It is what it is and each to their own.
Also, I appreciate your expressing your opinion on my post. We are made up a diverse set of people with varying backgrounds and opinions.
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 system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.Sign In to reply.
