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BLKJAK
BLKJAK Member Posts: 108

The activity in this discussion board seems to have dropped a bit recently. Maybe that means everyone is too busy living and they don't have time to post!  I hope everyone is doing well and has a great weekend!

 

BLKJAK

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Comments

  • Djinnie
    Djinnie Member Posts: 945
    Hi BLKJAK,
    Thank you, hope

    Hi BLKJAK,

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

     

    Djinnie x

  • MDCinSC
    MDCinSC Member Posts: 574
    Thanks for mentioning that!

    I've noticed it too!  I think it may have something to do with summer and more things going on with the longer days and increased opportunities for activities out of doors.

    In my case, I am just now getting back to work on a regular basis and the grind keeps me occupied. I am really ambivalent about that! LOL

    I do miss the exchanges and camaraderie though!

    Michael

  • I am alive
    I am alive Member Posts: 315
    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.

  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    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.

    Likewise

    Peg, you've accurately captured my own thoughts and feelings too and I think I'll follow in your footsteps.

    The amount of useful information appearing here in recent times has fallen away considerably, leaving mostly just humour and moral support for panicky folks who've been newly diagnosed. 

    I spend much more time now on Smart Patients where, following on from ACOR, serious discussions take place, with a wealth of helpful information.  Like you, I'll continue to read here, though, and keep up with the progress of friends old and new on this always cosy and cheerful forum.

  • MDCinSC
    MDCinSC Member Posts: 574

    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.

    Quite eloquent!

    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
    GSRon Member Posts: 1,303
    MDCinSC said:

    Quite eloquent!

    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 

    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

  • foxhd
    foxhd Member Posts: 3,181
    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

    Got to admit

    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...........

  • Southwest966
    Southwest966 Member Posts: 18

    Likewise

    Peg, you've accurately captured my own thoughts and feelings too and I think I'll follow in your footsteps.

    The amount of useful information appearing here in recent times has fallen away considerably, leaving mostly just humour and moral support for panicky folks who've been newly diagnosed. 

    I spend much more time now on Smart Patients where, following on from ACOR, serious discussions take place, with a wealth of helpful information.  Like you, I'll continue to read here, though, and keep up with the progress of friends old and new on this always cosy and cheerful forum.

    Me, too

    You could not have said it better.  I have to admit that I am guilty now of just perusing the daily entries but find it difficult to write anything.  I think that before, during and just after, we are all concerned about what is going to happen and seek advice.  Yet, there are many here who have been participating for years, Kudos to you.  I do thank one and all who responded to my postings, it was very helpful and comforting.  I don't really think I am Cancer free as the doctor said.  My first test is next month, so am somewhat anxious about that.  

    God Bless You All !

     

     

  • Galrim
    Galrim Member Posts: 307
    The bottom line...

    ...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
    Djinnie Member Posts: 945
    Galrim said:

    The bottom line...

    ...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

    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

  • foxhd
    foxhd Member Posts: 3,181
    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

    May I add

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

  • garym
    garym Member Posts: 1,647
    foxhd said:

    May I add

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

    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.

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    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.

    Discussion bored

    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
    MDCinSC Member Posts: 574

    Discussion bored

    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 .

    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

  • NanoSecond
    NanoSecond Member Posts: 653
    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

    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".

  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    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".

    Be that as it may

    Michael, my intention was not reproach but an expression of regret that we seem to have got away from serious questions being asked and answers proffered. That seems to me to be an important function of these boards but it just appears to have been rather in abeyance lately.

  • MDCinSC
    MDCinSC Member Posts: 574

    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

    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

  • MDCinSC
    MDCinSC Member Posts: 574

    Be that as it may

    Michael, my intention was not reproach but an expression of regret that we seem to have got away from serious questions being asked and answers proffered. That seems to me to be an important function of these boards but it just appears to have been rather in abeyance lately.

    I understand and appreciate

    I understand and appreciate that. I am relieved to know that it was your sensitivity for some that had you withdraw slightly and not feeling that you served no purpose here. 

    I was, and frankly still am, amazed at the depth of information many of you possess. As I mentioned to Nano, I appreciated the frankness with which you spoke to me. I looked forward to your posts because, not only were you demonstrating a level of understanding that gave me comfort, but, you did it in a way that educated me.

    Without stroking your ego, you were providing me with information I could use to be of more and better assistance and to understand all the potential paths this damnable disease can take.

    I have missed that exchange myself.

    I meant no offense to anyone.

    Pull no punches! I am hungry to learn while I am repaying the manifold kindnesses and encouragements I have received here.  For now, I can only realte my limited experiences and, yes, cheerlead. Laughing  That will change one day.

    Michael

  • GSRon
    GSRon Member Posts: 1,303

    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".

    Ah er.. well..

    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

  • Galrim
    Galrim Member Posts: 307

    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".

    But you shouldnt be silent...

    Seriously Nano. Dont hold back on that type of information, be it you or anyone else.

    We have cancer. We had cancer. We are prone to have relapses. All of us! The only thing differentiating us are the odds. We have to live with it. Period!

    Not nice to know, but its a fact. And denying it or trying to keep it hidden away is not going to help anyone. If someone doesnt like to be reminded of the risk of relapse or progression, then they should stop reading the threads were it is discussed.

    The information given in those threads are important and vital to a lot of people seeking information here. This board would loose a big part of its purpose if a general sentiment of "no no dont talk about prognostic factors and mcc´s in here, lets just pat eachothers backs and send happy thoughts and nothing else because then we get scared" prevailed...

    The comfort given, the advises, the wishing of good luck all holds value, but so does the information given about the darker side of RCC, whether we like it or not. What would this forum be without the stories and inputs from the likes of you, Texas, Fox and others? It might be a comforting and warm place to be, but it would also be a collective excersise in denial of reality.

    And the latter we certainly dont need...so keep posting and dont hold back.

    My five cents.

    /G