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BLKJAK
Posts: 108
Joined: Apr 2013

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

Djinnie's picture
Djinnie
Posts: 769
Joined: Apr 2013

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's picture
MDCinSC
Posts: 574
Joined: Feb 2013

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
Posts: 221
Joined: Jul 2012

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's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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.

Southwest966's picture
Southwest966
Posts: 18
Joined: Jun 2013

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 !

 

 

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

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's picture
GSRon
Posts: 1247
Joined: Jan 2013

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's picture
foxhd
Posts: 1910
Joined: Oct 2011

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...........

Galrim's picture
Galrim
Posts: 274
Joined: Apr 2013

...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's picture
Djinnie
Posts: 769
Joined: Apr 2013

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's picture
foxhd
Posts: 1910
Joined: Oct 2011

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

garym's picture
garym
Posts: 1651
Joined: Nov 2009

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's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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's picture
MDCinSC
Posts: 574
Joined: Feb 2013

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's picture
NanoSecond
Posts: 531
Joined: Oct 2012

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's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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's picture
MDCinSC
Posts: 574
Joined: Feb 2013

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

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

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

GSRon's picture
GSRon
Posts: 1247
Joined: Jan 2013

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 ***ed 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's picture
Galrim
Posts: 274
Joined: Apr 2013

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 

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

You da man Galrim! 

oopss!  I'm cheerleading again! Wink 

Call it my widow's mite!  Tongue Out

NanoSecond's picture
NanoSecond
Posts: 531
Joined: Oct 2012

Michael, Galrim, and others...

Many thanks for your thoughts. I will certainly continue to post the "facts" as I best understand them. I firmly agree that "knowledge is power".  However, I frequently find that I have to go against what is "commonly" accepted as truth whenever I conclude the precise and/or newer research points in precisely the opposite direction.  I find that this also can make some people uncomfortable - since it is troubling trying to deal with yet another level of uncertainty.

The only way to get at the "real" truth regarding these kinds of issues is at least to first hear them.  Sometimes that can be disorienting and uncomfortable.

Anyway, I don't plan to refrain from contributing more information whenever requested.  But I will be silent for this next week as I am about to attend 4th of July festivities that take me away from access to the internet and email.

Happy 4th to all (and, of course, even to our UK friends who may not be viewing this bit of history in quite the same way as we do) :)

 

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

We'll be here!

 

Thanks again!

garym's picture
garym
Posts: 1651
Joined: Nov 2009

When I was forced to join some 45 months ago there was very little technical information here and I have watched this site evolve into one that offers a much deeper knowledge based level of support with much more to offer our newcomers.  They come here scared and in need of both hope and knowledge, today both can be found here, not so in the past.    I have assumed the role of cheerleader (no skirt jokes please) because it suits me and my current “cured” situation while those in the thick of it like Tex, Neil, and others provide a wealth of  experience and information from the front battle lines.  It is a blend that seems to work quite well, and one that I certainly hope will continue.  The reason “I’m still here” is that RCC remains my constant companion and while I don’t currently have a need based interest in the fight, if/when I do, I’ll know where to turn.  I long for the day when all of this is no longer necessary, but until that time the balance achieved over the last year or so has worked best in my opinion.

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

Awwww!

Hmmmph! I'll bet he has the legs for it!

BLKJAK
Posts: 108
Joined: Apr 2013

We do need to have a variety of information on this board. Some people really need to have the cheerleaders in their corner to give them the courage to fight this damn disease. It's easy for a newbie to be overwhelmed by the technical nature of some posts, so it's nice to have others on here that can communicate to us commoners. Some of us want to know the details and facts of this disease so they can make informed decisions and challenge their medical staff to see if they are the right people to help them fight this using all of the latest tools in their arsenal. There has always been something for everyone here, and the members are constantly evolving. Their desire to get answers and information keeps growing. The information that once satisfied their needs will become inadequate and they will seek more indepth information from the likes of Neil, TW, etc. I'm thankful for everyone on this site. From the cheerleaders to those who are able to be logical and tell it like it is.

BLKJAK

P.S. I guess my post helped to generate some activity on this board! :)

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