Warm fuzzies that uplift and comfort versus knowledge that increases stress?

I think if a person searches enough to find a website they are probably searching for the honest truth.  if they are like me knowledge is power and knowing everything you can helps. Even if it causes some anxiety. Best wishes can be thrown in too.

Melliebean said:

Hi

I think if a person searches enough to find a website they are probably searching for the honest truth.  if they are like me knowledge is power and knowing everything you can helps. Even if it causes some anxiety. Best wishes can be thrown in too.

Sometimes it is hard to respond to others. Often a Newbie comes on board and is looking for false hope that it is not cancer when they have given you every indication that it is. Even when we are sure of the approppriate response we know from others that the answer carries a certain degree of uncertainty and must therefore qualify it. . Often they do not give the size of their tumor and we are reluctant to respond as we are unsure what would be the appropriate response.I would encourage anyone who is looking for a response to fill out their bio as much as possable as I for one read those bios as well as their post before responding.

In summary I try and be truthful and compassionate and give the perspestive of someone who has been there and done that rather than  trying to substitute my judgement for that of ther doctors. I also try not to get out of my comfort zone and my life experiences and leave the more difficult challanges for others to respond to.

Sounds like a bunch of rambling in response to a philosophical question.

Icemantoo

Phredswife said:

Anything said is helpful here.

Sometimes people are going through such a hard time it is very hard to know what to say. I know for me and my hubby it has been great just to be heard sometimes. Everyone here has such different things to share, words of comfort ,honest advice and even everyones different stories all help to make you feel not so alone. All of the comments people give are valuable even if their experiences are scarey to hear. Also the humour people have can be all you need to feel better!

First, when a diagnosis is given, there is a sense of panic. A warning of our mortality that we aren't prepared for. We do not enter this journey as Kamakazie pilots. We want nothing more than to have our booboo kissed and be told that everything is OK. So I think that is what most people are asking to be told when they join this forum. But surgery, treatment and time passes. So the focus evolves. Sort of like giving up our virginity. There is no going back or do-overs. As someone said in the last year, "There are bills to pay. Shopping to do. Errands to run. We move on and learn to live. If we don't, then we become basket cases. If our life span is to be shortened, it becomes too precious to waste. Unfortunately many cannot reach that realization. I think many of them drop off these forums because they can't deal with it. Ignorance is bliss. Out of sight, out of mind. Too bad it doesn't make the cancer disappear.

Secondly, those that have stared their cancer in the face and don't back off, find a way to accept the changes. Don't have to like it. Have to deal with it. We each have our own methods. For me, many of the details of my experience have faded in my concious like high school algebra. I can go back and dig it up, but if I don't need it, I let sleeping dogs lie. Somehow I have  learned to live in the moment. Doctor visits, scans, blood work. Part of regular daily life. So is humor, vacations, love and heartbreak. (and my Harley).

I remember somewhere around my first few months I talked about understanding the "nesting" phenomena.(sp?). I began settling in for whatever the trip would bring. Then I began to expand my horizons again. Too much good life to live. That has left me behind in my homefront duties. So this summer I have dedicated myself to home repairs, carpentry, painting and more. We have construction going on as we are adding space to bring my mother in law to live with us. I deal with all issues in my life as they present themselves. I don't worry in advance. No hand holding for me. If my future is to be shortened, I want to complete a long list of unfinished projects. Am I nesting again? Don't know. Don't care. I am living a happy productive life. So much of my interaction is based on "post critical cancer blues." I think some of  my responses to people come across as cold and uncaring. My intent is not. I try to let my experience as a cancer patient be the voice I share. My perspective is that of a survivor. We can do this. GSRon is proof of this approach. We can't waste time on that we cannot change. It is not recoverable.

So I now let others with more recent experience with diagnosis and surgery answer newbie questions unless I feel I have something unique to offer. I am more comfortable with sharing stories about how life moves on. And just for the record. No. I do not think that I am going to beat this thing. But I am going to make hay while the sun shines.

cheatinlil said:

I'm a realistic.  My husband

I'm a realistic.  My husband is an optimist. He would rather stick his head in the sand.  I would rather educate myself.  I think we compliment each other and we both learn from each other.  The same is true for this forum.

One thing I have learned is that there are no 2 identical kidney cancer journeys.  Everyone is unique.  The thing we learn from each other is how to live an abundant life with the elephant in the room. 

My story:  My husband has recurring stage 4 kidney cancer that has mastestized.  It is advanced and agressive.  We have not started treatment yet.  We find out treatment and prognosis on Thursday.

Sorry  you are here.  Hang in there.  Hugs coming your way.

Such a good topic...  and a difficult one for the reasons already mentioned..  Yes, some people want the facts and just the facts.. some come across as not wanting to know.. and everything in between.   

But, we all NEED to know if we really want to maximise our time.  It may sound harsh, popping someone's "bubble," but someone has to do it.  

It irks me when someone comes here post surgery and their doctor told them they were cured and no follow up is needed.  Even Stage 1 is less than 100%.  It may be high 90's but not 100%.  So in the end, how much of a gambler do we want to be..?  So, even though I try to be a tad gentle, I will always suggest follow up.  We have seen (rarely) Stage 1 folks get Mets, sadly it happens.  And it could be soon after surgery or many years later.  I look at it this way.. our bodies created the Cancer, and the reasons it did, were not removed with the tumor. Our bodies have those Cancer cells (CTC's) that our immune system is not getting rid of... and if enough of those cells "land" somewhere.. well, Mets.  Yes that is a simplistic viewpoint, but a pretty fair statement.

Then I try to present the hope...  Now hopefully soon, there will be treatments that will indeed get rid of the CTC's.  Drugs like HD-IL2 sometimes seems to do this.. and there are many drugs that hold good promise..  Hope some of them deliver the promise soon..!

Yes it is a difficult situation at times.. but the truth is indeniable, sooner or later..  And Denial is not a river in Egypt..

Ron - "still crazy after all these years...."

Annie,

My husband also had a 5cm. tumor in his right kidney at diagnosis.  Metastasis appeared in the bone three and a half years  later.  I too have read some folks say that 5cm. is small but 1 cm. is too big with RCC and I agree that even at stage one patients should be treated vigilantly.  Sometimes I think the doctors want to make patients feel better so they make light of it.  They too are human and want to relieve pain and anguish. 

I only found this website after my husband lost his battle in Dec. 2012.  I have been seaching for something to do with all that we learned on his jouney, that might help others.  So I lurk on this site and onl;y give advice when I think it might do someone some good.  I am cautious because I too don't want to add to anyone's burden.  I know too well how cumbersome cancer is.

My husband was an optimist with a wonderful sense of humor.  We used to say we were the only 'idiots' laughing in the oncologists office.  He deperately needed hope and didn't always hear the truths the doctors told.  Sometimes I think he didn't want us to be upset for him and about him so he made as light of it as he could. I am the realist and even though I saw the train coming it still hit me like a ton of bricks. 

Knowledge is power, I think these days more than ever before, because there are more options and patients and their families must keep their eyes open at all times so they don't miss anything, and that means treatments as well as moments together. My greatest hope is that cancer is cured and all of this suffering stops.  I pray for everyone on this site. 

For me, I want to know all there is to know about it. The "good, bad, and ugly".  I HATE surprises so feeling that I have learned everything I can about (say) kidney cancer, then I can prepare to deal with the worse that can happen.  Not that that is easy, but I makes me feel better having a "battle plan".

If people ask for info. I will tell them honestly what I know - or say, "I don't know".  Feeling that they did ask and I feel expect honesty in the answer.

If things are going great I'll cheer, if things are not, then will always be a shoulder. 

We have to be honest about the facts, but hopeful in the delivery. One of the biggest surprises about kidney cancer for me was that you can live for years and years with it. Death,for many if not most of us, is not imminent. And so the great task- after finding an RCC specialist - is learning to live with it. THe many voices on this forum and others have taught me how to forge ahead and regain the thrill of living. Testimony and example pave the way. And where else can you learn so much, so quickly, about treatments, trials and new advances? That's what we are here for. To share our hard-won knowledge, our ugly truths and our still beautiful hopes. None of us needs to hear bromides. Intellectually, we all know that any one of us,at any time,could get hit by a truck and die, regardless of cancer. We are all on borrowed time from the second we take our first breath. Cancer is just something else to deal with. It brings mortality into focus, but also joy.