This discussion board

Hi BLKJAK,

Thank you, hope you are doing well too:) Have a good weekend, and a very happy 4th July to you!!

Djinnie x

I've been prowling this site for just about a year now and I've noticed in my own self a tendency in recent months to stay mum and only skim discussion topics. What happens, I think, is that after a while you have gained the basic knowledge and insight and equilibrium you were so desperately hoping to gain in the beginning, and topics get repetitive. You throw your two cents in, but there is, unfortunately, a never-ending tide of newly diagnosed RCC folks who wash ashore here. The realization of that saddens you. You let others take over extending helpinghands, tossing out the life saver. People you initially "bonded" with drift away. Or disappear, causing you worry and more sadness. Did they fall into sharp decline? Did they die? There comes a point, too,  where you feel that it's just time to Live Your Life and maybe not quite so obsessively troll the site. That said, I do still check in most days. Just to see what's what. I'm thinking there are a lot of silent observers. We're here, just not as actively engaged.

I am alive said:

Been thinking the same thing!

I've been prowling this site for just about a year now and I've noticed in my own self a tendency in recent months to stay mum and only skim discussion topics. What happens, I think, is that after a while you have gained the basic knowledge and insight and equilibrium you were so desperately hoping to gain in the beginning, and topics get repetitive. You throw your two cents in, but there is, unfortunately, a never-ending tide of newly diagnosed RCC folks who wash ashore here. The realization of that saddens you. You let others take over extending helpinghands, tossing out the life saver. People you initially "bonded" with drift away. Or disappear, causing you worry and more sadness. Did they fall into sharp decline? Did they die? There comes a point, too,  where you feel that it's just time to Live Your Life and maybe not quite so obsessively troll the site. That said, I do still check in most days. Just to see what's what. I'm thinking there are a lot of silent observers. We're here, just not as actively engaged.

I wish I had said that, and I couldn't agree more. 

Both you and Texas Wedge have hit upon a significsnt portion of the reason for the quiet.

These are the reasons you are missed; your calm assurance, your ability to place things in perspective, and the fact that you ARE still survivors.

Thank you for your visits!

Michael 

GSRon said:

Quiet..?

Actually, I see a lot of Newbie activity.. and I think one of the best things here is helping the Newbies..   As far as hard data goes.. well we do have threads on darn near every topic RCC related there is, don't we..?  What is missing..? 

Be Well..!

Ron

I have the same feelings as I am alive, and Tex. I have been pleased to see  newer members pick up the momentum. It gets hard to be so involved and then never know what the outcome is for our friends. I guess if one looks back to the beginnings of this board, the pattern repeats itself. I for one have too much going on in my life to dedicate as much time to the computer. Sometimes I just want to be ignorant about kidney cancer again and not devote time or energy thinking about it. It is like my philosophy of avoiding negative thoughts. It becomes lost energy and time which is too precious. But in NO WAY, do I have any less concern for my closest friends and my newer ones. Cancer just sucks too much emotion and vitality out of trying to live well. I know that I need a break now and again. I actually spend little time on any forums any more.  I am trying to enjoy my family and whats left of my retired life. Please all remember that I LOVE you guys. I am here to share karma. To share positive outlooks, enthusiasm, and humor. Which reminds me, 2 bikers walk into a bar...........

...is, I think, that youre all right in your views.

But isnt that basically just the way it should be? A place like this will by definition be fluctuating in terms of who drops by, the activity, the need to be here, the urging to be here.

We`re bound together here by one common thing. A fixation point in our lives we share, even though a negative one. But it shouldnt be the one our lives completely revolve around if we can avoid it. So we drop in, we help out, we read, we learn, we participate. We get attached, emotionally, to being here, to the people here and their destinies.

Some leave again after awhile, some stays, some are forced to leave us. Like it is with families, friends, workplaces, you name it. Its how life is...isnt it? And that applies in here as well, for better and for worse... 

Summerly viking hugs from the cold north to you all (Send some of that southwestern heatwave here please, its 16 celcius and raining in Copenhagen at the moment....brrrr).

/G

Djinnie said:

Great bottom line

G..You always have great insight, that was so well defined:)  I could not really put my finger on why I come to this site so often, reading your post was an ah ha! moment for me.

I don't really discuss having had cancer, apart from maybe a passing comment. It is not something I want my family and friends to dwell on, or myself for that matter. However! this site obviously fulfills a need in me to talk to people united by the same experience. People who have become, in someway like an extended family. Here you can talk freely, which is sometimes difficult to do with those closest to you, for fear of causing pain and worry. We all just know without the need to explain.

As they say: A shared history creates an understanding that requires no explanations!

 

We actually had a taste of summer yesterday, it was, melt the soles of your shoes hot, not a cloud to be seen. Short lived though, we are back to what is seemingly becoming the norm, grey skies.

You are lucky, you have sunny Italy to look forward to soon:)

 

Djinnie x

that I've also had a difficult time logging on again. Not unusual that I just give up and do something else.

garym said:

You beat me to it...

I was just going to say the same thing, but you beat me to the punh while I waited.  Frustrating at times for sure.

Unfortunately, we've recently had a lot of rah-rah postings - 'Be positive; you know you can do it; I'm sending you hugs and good vibes'  but not much in the way of useful and helpful INFORMATION - there's a role for all of these but lately the Board seems to be pretty thin on material of any real substance .

MDCinSC said:

Be that as it may,

Not all of us have the levels of experience and background to offer that kind of insight. I for one would never presume to try.  All I CAN contribute is support and camaraderie.  I guess those that CAN do more, perhaps need to decide if they WANT to do more.

Your posts and comments, full of good technical information, helped give me confidence and made me feel as though all was not lost and I knew that if you and others like you were still here and interested enough to help folks like me, then I would probably be okay!

I fear we have let you down by not rising to your expectations.

I give from my little bushel those things I have.

Michael

Hi Michael,

I want to offer a flip-side to this discussion.  I am someone who is quite happy to offer all the hard knowledge and research that I continue to gather ever since I "graduated" into stage IV status last July.

However, recently I posted a very short response to something Galrim wrote pointing out that we all still need to be aware that when the surgeon says "we got it all" or the oncologist says, "congratulations, you are now cancer-free" these are not accurate statements.  We all, regardless of stage, still harbor circulating and dormant cancer cells within our bodies.  They may never progress any further into a full blown metastasis - but they are there and therefore we should always be vigilant.

After posting that observation someone else later responded how they really didn't appreciate hearing that particular fact - after all they had just been through.

Well, I feel awful about causing anyone distress.  It is always my intention to offer only the very best support I can muster. But that, to me, is to provide accurate and helpful information.  When that inadvertantly upsets someone or disrupts the camaraderie on this board I reluctantly conclude it may be better to just stay silent and "read the mail".

NanoSecond said:

A little different spin

Hi Michael,

I want to offer a flip-side to this discussion.  I am someone who is quite happy to offer all the hard knowledge and research that I continue to gather ever since I "graduated" into stage IV status last July.

However, recently I posted a very short response to something Galrim wrote pointing out that we all still need to be aware that when the surgeon says "we got it all" or the oncologist says, "congratulations, you are now cancer-free" these are not accurate statements.  We all, regardless of stage, still harbor circulating and dormant cancer cells within our bodies.  They may never progress any further into a full blown metastasis - but they are there and therefore we should always be vigilant.

After posting that observation someone else later responded how they really didn't appreciate hearing that particular fact - after all they had just been through.

Well, I feel awful about causing anyone distress.  It is always my intention to offer only the very best support I can muster. But that, to me, is to provide accurate and helpful information.  When that inadvertantly upsets someone or disrupts the camaraderie on this board I reluctantly conclude it may be better to just stay silent and "read the mail".

I frankly always appreciated your directness and clarity.  You always couched it with enough provisional language that you never made me feel uncomfortable.  I wanted to know the range of possiblities and you led me there clearly. I have valued your input ever since and have always looked forward to your comments.

I wanted straight answers from the get go.  You gave them!

Don't stop on my account!

Michael

NanoSecond said:

A little different spin

Hi Michael,

I want to offer a flip-side to this discussion.  I am someone who is quite happy to offer all the hard knowledge and research that I continue to gather ever since I "graduated" into stage IV status last July.

However, recently I posted a very short response to something Galrim wrote pointing out that we all still need to be aware that when the surgeon says "we got it all" or the oncologist says, "congratulations, you are now cancer-free" these are not accurate statements.  We all, regardless of stage, still harbor circulating and dormant cancer cells within our bodies.  They may never progress any further into a full blown metastasis - but they are there and therefore we should always be vigilant.

After posting that observation someone else later responded how they really didn't appreciate hearing that particular fact - after all they had just been through.

Well, I feel awful about causing anyone distress.  It is always my intention to offer only the very best support I can muster. But that, to me, is to provide accurate and helpful information.  When that inadvertantly upsets someone or disrupts the camaraderie on this board I reluctantly conclude it may be better to just stay silent and "read the mail".

Hey Nano...  I am sure that it may be difficult to tell it like it is.. but after all, Denial is NOT a river in Egypt..   Facts are sometimes difficult to give and just as difficult to receive. but they still are facts.  Sadly, I dare say many or even most of us will get that news one day that they have Mets.   I usually am one of those that does not want to know.. but there I was asking that difficult question only a few days after surgery... I saw my Surgeon gulp at the thought of having to give me an answer.. he told me I had about a 60% chance of no Mets.  I smiled at him and stated that was better than I had thought... 

Still after about 9 months of clear scans I went back in to denial, only to have the reality hit when my scans came back with Mets.  I know I would of been better off, had I gotten more info prior surgery, and again prior to my first scan.  After all, knowledge is power.  I blindly went to two Oncologists that were not fully up to the fast pace / latest info on treatments.  I almost made a very bad mistake with Onc number one.. I got lucky that this Dr was not covered by my insurance and I went to Onc two that was obviously incompetent.  So, I went and e-mailed my surgeon asking advice... he quickly got me to one of the best in the country..!   And thanks to this list, I learned a LOT.. more than a LOT..!   Your diet info firmed up what I should or should not eat, thank you.  And, all the info on side effects on Votrient is priceless, it helped me prepare and not panic.. on and on.  I was a lot better prepared for the Votrient than I would of been without this place..!

But one of the best parts of this forum is all the well wishes from people I have never met..!!   So, keep on giving sound advice.. we all need you.. and for that one person that may get a bit mffed about the truth, well.. they soon will (sadly) find out anyway.  but having advance info can also settle the mind...

OK, off to start a new post...  

Be Well All..!

Ron