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

a_oaklee
Posts: 526
Joined: Nov 2013

I've wanted to write about this topic for quite awhile.  I pray that I am understood in what I am attempting to learn about myself and about others.

I would appreciate some conversation regarding your personal opinion on warm fuzzies that uplift and comfort versus knowledge that may increase an individuals stress level.  What input are you most comfortable receiving, and what information are you most comfortable giving?

Personally, if I was coming to this site seeking help and input from others, I would want knowledgeable truthful information even if it was upsetting.  I want to know what I need to know, even if it isn't good news.  On the other hand, I am extremely uncomfortable giving information here that would cause more stress and worry to an individual who is already stressed out and upset. 

I know the answer for me is to try to give both support (warm fuzzies), and help (information), but it is so very difficult to tell a person some things that are alarming.  Sometimes I think I should say something, but I don't.  Trying to be "positive" is sometimes difficult, so I say nothing. 

Does anybody else struggle with this situation? 

Annie

PS. It drives me crazy when people say 5 cm tumors probably haven't metastasized.  It may be statistically a small percentage, but my husband had a 5 cm tumor within the kidney with mets to multiple bones and one lymph node.  So that is an assurance that I just cannot give, and I feel tremendous guilt in sharing this information with someone who is worried about their pre-op 5cm + tumor.  We ask ourselves, at what point did it metastasize?  When it was 3 cm, 4 cm?  I struggle with this, and I just want to SHOUT at people to hurry up and get your surgery done, as soon as you are comfortable with your surgeon, and plan.

I thank you in advance for the opportunity to share.

 

 

Melliebean's picture
Melliebean
Posts: 53
Joined: Jun 2014

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.

icemantoo's picture
icemantoo
Posts: 3286
Joined: Jan 2010

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's picture
Phredswife
Posts: 162
Joined: Apr 2014

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!

APny's picture
APny
Posts: 1988
Joined: Mar 2014

Great question. For myself, I appreciate both knowledge and the warm fuzzies. While I like to be realistic I also like having hope. So when I was told that it was unlikely that my 3.5 cm tumor has metastasized, and chances were good they "got it all" I'm realistic enough to realize that there's still a chance but I like to be optimistic that the likelyhood is small. Not impossible, just small.  

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

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's picture
cheatinlil
Posts: 194
Joined: Jun 2014

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.

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

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...."

pamstayner's picture
pamstayner
Posts: 111
Joined: Apr 2014

I joined the forum to learn.  I read every post from everyone from post number one... then wrote my first post.  I felt like I already knew everyone who contributes frequently, and learn more every time I catch up on the site.

I also have learned to HATE the "we got it all" statements from surgeons... and called them on it after my second surgery for RCC.  14 months after the right total nephrectomy and "we got it all" prognosis... I had emergency surgery for a brain met!  I ran all the ranges of emotion, and when the brain surgeon said "we got it all" I was pissed and said so... read him up one side and down the other ... "how dare he tell me that"  after all I had been told that before.... and look where I am... so the conversation continued with my surgeon explaining that what he means is "they got all they can see of the cancer. They cannot see microscopicly or at the cellular level... hence they got it all"  Still was stupid to me, but now after joining this forum, and Smart Patients, I am so much more educated on my disease.

I am knowledgeable, careful, proactive and yes, happy now.  This forum and the "mainstays" who regularly post have made my mind easy and enriched my everyday attitude... I am DOING this... and so if you would have something to say... say it... it does help...

Pam    Battle On

  

 

Srashedb
Posts: 482
Joined: Dec 2013

many years ago, I was on a breast cancer forum in the AOL days; what I got from being there were things like side-effects that either docs weren't aware of or didn't think were important.

my treatment was pretty straightforward and breast cancer incidence was quite high in my community so issues like the ones on this forum never really came up.

with my husband's cancer, I have learned that the right specialist and team can make the difference between life and death. Like Fox, and in fact, using the same term, my husband says "this will probably get me" but I learn so much here from the ones who really know stage 4 does not mean imminent death. It really helps to share this with him. He is a very outgoing and positive man but also a realist. 

He knows that I research so he lets me do it for him. 

i too cringe when someone says their surgeon says "we got it all" or someone here says that it's small and probably cureable. A small tumor can be grade 4 or have sarcomadoid features which make it very aggressive so thinking that a small one can be left alone is a disservice. But, on the other hand, I am not a kidney cancer patient so do i have the right to say anything?

i have never been a cheerleader so I don't ever do that unless someone gets good results on their scans or has a treatment that improves their situation. There are folks here who have been in the trenches and come through. To them, it is honest to applaud their guts, the fight to survive.

i am sure there are more thoughts (great topic, by the way) but for now it's off to bed for early morning work.

Sarah

Billy's Wife's picture
Billy's Wife
Posts: 52
Joined: Jan 2014

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. 

aamdsi
Posts: 284
Joined: Apr 2014

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. 

NewDay's picture
NewDay
Posts: 273
Joined: May 2012

Hi Annie,

This is a good subject.  This site has been invaluable to me.  I can’t imagine how it would have been to go through this without the support of others here.  I know that when I joined, I wanted to gather all of the facts I could.  I am one of those people that want all of the details, good or bad.   Otherwise, how do I make educated decisions during this process?  At the same time, I hoped to find… well …. Hope.  I found both here.  I admit I haven’t posted a lot and sometimes feel guilty about it, like I’m too much of a taker and not a giver.   

I’m one that gets really annoyed when the doctors tell someone that they are “cured”.  That is what my surgeon announced to my family when he came out of the operating room.  This resulted in them not understanding why I continued researching more information, seeing an oncologist, getting scans, going to see an expert, etc.  After all, I was cured.  It turns out I was not.

Like you, I’m often not sure what to say when newbies post.  If their tumor is on the small side, do you tell them not to worry because it is very unlikely to spread?  Or is that risking the possibility of them taking it so lightly that they don’t take followup scans seriously?  If they share information about their pathology that we know means the news is bad, how much do we say?  You don’t want to scare them but you do want them to take the situation seriously.  What happens is that I get stuck because I don’t know the right thing to say.  Sometimes someone posts who has received bad news and you want to tell them everything will be ok, but since I know everything may not be ok and I don’t want to say that, I say nothing.  It is just so hard to find that balance.  All I can do sometimes is at least encourage them to come here for support and hope the others here will know the right thing to say, which I know is not fair.

 I’m just going to do what I can and hope I eventually do better.

 

Kathy

I am alive
Posts: 316
Joined: Jul 2012

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.

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