Jump to content
Sign in to follow this  
bware21

Please Think

Recommended Posts

I had intended to write a substantial piece about why it's important to think before posting, but I've decided against it for three reasons. First and foremost, I don't think it'll do any good -- if I did then I would. Secondly, my wife has conviced me that more information is better than no information, even if the data is suspect. And lastly, but no less important, I'm presently not in the right frame of mind to write anything worthwhile. But here's the joke -- you would think I'm not in the best of mental health because things aren't going well. Fact is, my treatment couldn't be going better, and we've had nothing but good news thus far. So why the mood? Well, it was sparked by something that was rather lazily copied and pasted on this Web site from another source. Now, that in itself didn't bring me down -- it was what I searched for in response to the posting that did it for me. All I would suggest (and this is already longer than I wanted), is for people to THINK when they're dumping information here, and to never forget who may end up reading it. That's all.

Bill

Share this post


Link to post
Share on other sites

Bill:

First I'll say that I have been following this and your last thread, but have no idea what is bothering you about information presented.

That said, understand that everyone is going to present information that they truly believe is relevent and might be of interest to other members. As laypeople in this journey (for the most part), few of us are truly skilled in evaluating and editing content to a high standard. For a public forum, in my opinion, that is up to each member to evaluate information presented as to what is relevent or not to them and anything found useful, to discuss with their own medical team.

I do understand your general commentary in my own way. While I'm a layperson, I do have an advanced degree in operations management & statistics and understand study design really, really well -- some information is questionable, but that is not the fault of the membership at large. Poor study design and too small sample sizes to draw conclusions on has been going on for years -- yet this is the stuff of headline news all the time. The validity of websites copied from is another issue -- that one also is tough for folks to judge.

And...sometimes shreds of evidence is all we have found so far as a lead collectively...sketchy today, may lead to more tomorrow, but someone needs to talk to an onc. now about possibilities....thin lead, maybe, but something is at least something to consider....today.

As I said, when you see information you think is questionable, just please ignore it for your personal use -- no one means any harm that I've found. We share a huge amount of information here, but we each have a responsibility to evaluate for ourselves.

Researching in and of itself leads to many "red herrings" along the way. That's just a part of the reality of research advocacy.

Sincerely,

Linda

Share this post


Link to post
Share on other sites

Would really like to know what info was as you called it dumped on this site. But i agree with Linda in her assessment. I've been on here ever since my Wife was first DX'ed untill now and i even got upset a couple of time's over different remark's, but i understand now that most of my being upset was not so much what was said but my own thinking at the time. Whether were fighting this desease or watching a loved one battling it, it often make's us more sensitive and defensive. It's a scary feeling and a helpless feeling and thank GOD that Katie and Rick started this site where we all can share our thought's and feeling's and VENT our thought's and feeling's. Glad all your new's is good and pray it continues.......Larry

Share this post


Link to post
Share on other sites

Linda, I think that your post was spot-on. Bill, I'm not sure what information you are referring to either, and I also take your point that sometimes information relating to lung cancer generally can become extremely depressing to sift through. I know that when I was researching things relevant to Mum's disease and treatment, it was difficult to find much that was hopeful or inspiring. As time went on, I became somewhat desensitised to the negative information, and learned to focus on what might be useful for us.

You never know what piece of information might just help someone - I learned things on this website that my Mum's radiation oncologist didn't know about. And a treatment or therapy that might sound wacky to some people might just be the magic bullet for someone else. There is a man well-known here in Australia, who basically cured himeself of terminal cancer through diet and meditation. He spends his time teaching others about his methods, and a handful of people over the years have had similar results. Now, his method probably won't work for the majority of people, but if I had a 'terminal' illness, I would appreciate being given the information so that I could decide for myself if it was something I wanted to try.....

I think the more information we can share, the better, and as you say Linda, we each have to take responsibility for evaluating what is presented to us, and deciding what we are going to take on board.

All the best,

Karen

Share this post


Link to post
Share on other sites

Dear Bill,

I, too, don't know what post or search it was that brought you down, but obviously it had a big impact on you since you have now written about it in two posts.

Bill, I live by the expression to "Expect the best, but prepare for the worst." Each is equally important. While preparation for the worst is not enough to cushion the worst blows, it at least protects us from a Pollyanna approach to this disease.

I have not been very active on this site since my husband passed, but I was quite active during his illness. I can tell you that I soaked up every bit of information, the good, the bad and the ugly that any researcher on this site took the time and effort to post. I didn't always like it and I didn't always agree with it, but I was and continue to be grateful for the information that relates to this disease, no matter how hard it is to hear. This is an ugly disease, and while there is a lot of hope and more and more each day, the fact is that it still remains an ugly disease.

Prayers for your continued good reports, Bill. Continue to keep your eyes focused on a great outcome. But I would also suggest that wisdom truly does dictate preparation for the worst, if not for yourself for your family.

Love,

Peggy

Share this post


Link to post
Share on other sites

Ya know, I read this post and I was going to just ignore it but I feel I must respond with this.....

I completely agree with Pat.

I don't think anyone should have to proof read their post in fear of anothers opinion.

I'm not trying to stir the pot here, just would hate to see others not posting because this is such a wonderful place just the way it is!

Share this post


Link to post
Share on other sites

Bill,

I have my Teflon underwear on, hope you do. I think you may need to not put this between the lines and just give the trigger to your post. I think that would be something people could understand...

Otherwise, people are going to jump on you for "insulting" them and I truly do not believe that was your intent, at all.

Just for the record, as I stated in my PM to you, I agree with your opinion of what was posted and how it was presented.

Share this post


Link to post
Share on other sites

Hi,

Like many others, I am intrigued by what has set you off. Please let us know. If it's an article of dubious content, tell us.

Having said that, I think there is often information here that may not be accurate - but let's consider what this board really is. For the most part, it is anecdotal information about individual's responses,experiences and feelings. We should all use it as just that. It is another datapoint in helping us make a decision. One way it is very useful is simply to help us know what questions to ask out doctors.

The board has presented to me ideas that allowed me to have a better understanding of my disease. First the information here, then a discussion with my doctor or nurse.

Anyway, I do appreciate your comments are in an effort to ensure accuracy in whats presented, so I thank you for that. I guess beyond that I say, we all need to be discerning as we go through the information presented here.

Mary

Share this post


Link to post
Share on other sites

Bill, I agree w/ you, Becky and Linda (and all the others) who have their doubts about some of the research posted here. The Internet is full of bogus cancer cures, so it is inevitable some of them will find their way to this forum. When I see questionable research posted, I point out why I am skeptical of the study in the hopes that others will approach it with a critical mindset. In any public forum, there are bound to be posts of "lesser" quality, and those of us who know about research design and statistics can perform a service by critiquing questionable data without impugning the original poster.

Many future good reports - glad your rx is working!

And Nick - thanks for the levity! :D

Share this post


Link to post
Share on other sites

Okay, gotta put in my 2 cents. I don't really read the research information very much anymore because it does not affect me right now. (I wish it did.) But, when Earl was sick, I used this site as the jumping off point for getting data to ask his doctor about or to do further research.

I would hope that anyone reading here would take any and all of the posts as helpful but not necessarily the 'gospel'. I agree that each of us has the right to post what we want and hopefully, we will think that it is useful.

Bill, my only reason for responding to you is that I think you should be clearer. Is there a particular post about which you have concerns? Or is there a general topic which you think should be excluded? Do you have an opposing opinion or data to the post?

Please do not take this as criticism. Just the ramblings of a long time member.

And BTW, I read about the too Nick. WOW, and I thought it was true.

Share this post


Link to post
Share on other sites

I'm also curious to know which post you are referring to.....I truly feel that the people on this site that are posting all have viable reasons. Whether it be humor, venting, information,etc.(Except for the perverts that sometimes slip in the questionable sites after a one time sign-up) The last thing I would want is any one's feelings to be hurt. After all, we are here for support and we have all been hurt or are hurting in some way. Personally, this is my escape...It gives me an opportunity to speak what's on my mind without a negative confrontation or the fear of having one. Your post made me very uncomfortable and I am nt even sure if who you are talking. Believe me, I am not trying to upset anyone. I just believe that we need to keep in mind the purpose of a support group... SUPPORT..Unconditional Support!!!

As earlier posts have stated, if there is something that anyone is in disagreement with then "take it with a grain of salt" and move on to what is pertinent information for you.

WE ARE A FAMILY!!! WE ARE ALL IN THIS TOGETHER!!! Caregiver, Survivor, Supporter or Friend...This is our village and it has to continue to grow in order to make a difference. I pray that I haven't offended anyone as that was definately not my intention. But as a woman of faith, I do know that you are all my family unconditionally. If it's important to you, I can promise I will have complete empathy in what you have to say even if it doesn't apply to me. I know many times we search desperately for that magic bullet and we search in many different places. The source may be fabricated, the idea may be ridiculus, the treatment may not be credible but again we are desperate for a cure and not just for ourselves but also our family. Let me end by saying that I aplogize profusely if I offended anyone at anytime!!! I love you guys (all of you) and you are part of the reason I am still here!!!

Thanks for listening!!

GOD BLESS!!

Jamie

Share this post


Link to post
Share on other sites

Okay, here's the deal (and if I repeat myself I apologize) ...

Last week I was feeling great -- upbeat and positive, and with the fighting spirit of a cougar. Then, I come onto the site to browse through the posts. I open one post to find an article that was copied from another source, and a couple of lines into the article I read:

"Long-term survival in SCLC is poor ..."

Because I'm dealing with SCLC, you can imagine that these few words popped out at me. Now, after reading through the entire article I felt strongly that this commentary could have been removed from the article without diminishing the point. And that made me angry because I thought it demonstrated insensitivity and poor judgement. The fact that the author of the post doesn't even have cancer, let along SCLC, just added to my frustration -- which will lead me to a topic I'll discuss later. But back to this line of thought ...

I'm a pretty strong character, though sometimes intolerant, ocassionally arrogant, and often just plain stupid. So, I'm thinking: Long term survival for SCLC is poor, huh? We'll just have to see about that. And here's where my stupidity kicked in -- I now decide to go back through the history of this site and see for myself how everyone with SCLC ended up. Well, it didn't take a calculator to figure out that, with the exception of a couple of people, everyone was dead ... and usually within 12 months. One week later here I am fighting to get my fighting spirit back, and I think I'm finally succeeding. Another few days and I'm sure I'll be back to my old self. In the meantime, I thought it incredibly important to draw attention to to an issue that isn't difficult to understand, but may be difficult to fix ... because, as my wife so rightly points out, this site is catering to two distinct groups of people -- those with cancer and those family members who have to witness it.

On the point I've just talked about, it was my own stupidity that led me down that dark path -- I knew when I went back in time through this site that I wasn't going to find anything uplifting (from my standpoint). Nobody's fault but my own.

The next (and final) point I want to address stands a good chance of offending a lot of people, and for that I really do apologize in advance. And let me preface what I have to say by stressing that I wish to offend no-one. For goodness sake, there is so much grief, sadness, hurt and turmoil here that it almost defies belief. Having said that, sometimes you have to tread on thin ice to find out where the weaknesses are. So here goes ...

Clearly, this site is helping people who have cancer and their family members -- two distinct groups with totally different needs. As a result, there are bound to be cracks in the ice, so to speak. If anything, I'd suggest that there are more people active here who do not have cancer than do. I've thought hard about how you can reconcile the two groups to enable the best support for both. The truth is it can't be done. There will always be disconnects and that's no-ones fault -- just the nature of things. But here's one practical suggestion, and I put this forward from my point of view only:

When someobody dies from this insidious disease I think it would be a good idea if family members that continue to post removed the timeline from their profile. And before you jump on my back, let me explain myself ...

When your timeline is updated annoucing that your loved one has died that timeline is updated in every post you ever did. For someone with cancer, going through the posts is rather like reading an obituary column. I'm not sure that's helpful to anyone who is currently going through what you yourself have already been through. This is a tricky one, because it begs the question -- who is this site really for? And I've already said that it's for two distinct groups who cannot be reconciled.

I know I've hurt someone by making that suggestion, and I'm sorry for that. I feel your grief (I sat with my own mother when she died), and I do understand how important this community has become for you. Maybe there is no right or wrong answer to the questions I've raised, but if questions were never raised we'd still be living in caves.

As for me, popular opinion says I'll be dead within 12 months. That may or may not be the case. What's important to me right now is that I regain the strength I had last week and fight this sonofabitch with dignity and faith, both of which I have in abundance when I'm operating on all cylinders.

Peace.

Bill

Share this post


Link to post
Share on other sites

This has the potential to be another big blow up, and as a moderator and a member that makes me really, really sad and anxious.

Yes there IS a disconnect between survivors and caregivers, but there are a lot of things we can gain from one another too.

I have no comment on the 'timeline' issue. And really no one can comment deffintively on that except for Katie or Rick as they call the shots here...

Which is what brings me to my next point--Katie has A LOT going on right now outside of these boards. A HUGE BIG FREAKING LOT. And she does NOT have time, nor should she be expected to expend the energy to come and mediate between the grievers and the survivors or any other camps that may come out of this or any other kafoffle.

What SHE NEEDS is for us to cool it for a while... to continue to support one another where we're at, timeline or no, until her life settles down to a point where she can again focus on things of less immediate importance than her family's well-being.

So I guess what I'm saying is, let's tread lightly here. Let's try to keep ourselves in check. This IS sensitive for folks on all sides of the issue. And versions of the evidence of this 'disconnect' come up every once in a while. This is not new territory for most.

What is important is that we are ALL a family. Those of us who have lost family members aren't here to bring you survivors down--rather we're here to cheer you on. Sometimes we post to gain our own support.... But most often, we stick around because we CARE ABOUT EVERYONE WHO IS AFFECTED BY THIS EVIL DISEASE.

We have a common enemy here, and it's not one another. It's Lung Cancer.

So.... Let's tread lightly, be gentle with one another and ourselves, and do our best to hold down the fort and give Katie and Rick some space to be human and to get through this latest huge bump in their own journey.

With love and respect for everyone,

Val

Share this post


Link to post
Share on other sites

We need to respect each and every member’s opinion regardless if one agrees or not. This is not about people with lung cancer or the caregivers, the Hatfield’s against the McCoy’s--this is about each and every one of us together as one. I’ll say it now and I said it many time before in my case I have it a lot easier then my caregivers do. Regardless of what one posts it’s up to each and every one of us to take it or leave it. What may not help one person may help another person. To me it would be a very sad day if we asked members to restrict themselves or ask them to remove parts from their profile anything regarding their own journey. As far as the stats go it’s sucks overall but that does not stop me nor should it stop anyone else from battling with everything one has. I come here to learn from others, to try and contribute and yes to count my blessing's that in spite of being Stage (4 months away from 5 years) IV I’m still alive, I’m still here and I’m still able to have a life. There are many survivors here from all walks of life with diffident variations of lung cancer. This is a place where there is hope, where this is light at the end of the tunnel, where we can all make a difference and there is no other place on the Internet like this.

Share this post


Link to post
Share on other sites

Thanks Val...

I was just about to post that I no sooner tell Katie that we will hold the fort and the fort is shaking.

The people that have lost family members are very valued here. If the profiles (or any other forum) bothers you don't read it. It is very hard for me to read the grieving forum-- so I avoid it. It's like the old joke where the guy goes to the doctor and says, "it hurts every time I do this, what should I do?" and the doctor replies, "Stop doing that."

I knew the dismal prognosis for my husband before I ever found this board...I found a lot of hope here and I hope you do too Bill.

Share this post


Link to post
Share on other sites

Bill,

I feel for you because I have been exactly where you are right now. Your posts intrigued me so I found the article that sparked this discussion and I agree that the statistics are frightening. I had to see for myself what the odds where for stage 3A nsclc after my husbands surgery. I couldn't find anything that says other than 5-year survival rate of 30%. Imagine looking at my 3 and 5 year old kid's faces and thinking about the fact that their daddy most likely won't be here. After a breakdown which was long-overdue, I decided that my husband didn't fit the average profile and to listen to his doctors and to ignore the odds. You need to do the same. Oh, I went back and looked at previous postings and came to the same realization as you, too many are no longer here.

What I like about the mix of caregivers and people who have cancer are the different perspectives. My husband refuses to participate in any forums or support groups. He wants to feel as "normal" as possible. But, he does occasionally ask me what others have experienced with the different treatments he is undertaking. He likes the fact that I filter the negative information if possible and share what we think he needs to know. Not my choice, but something I am willing to do for him to stay strong and motivated to fight.

Bill, stay strong and give yourself every fighting chance you can. I recommend ignoring statistics and place yourself in the group of survivors of sclc. You are responding very well to treatment and will continue to do so (especially if you will quit smoking :wink: )

Mendy

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Sign in to follow this  

×
×
  • Create New...