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Pity Party

Vagusto's picture
Vagusto
Posts: 86
Joined: Aug 2011

Hello

I guess that I'm having one of those days, and I told myself who better to understand than you guys! I was diagnosed with kidney cancer when I was 46, almost two years ago. I had the kidney/tumor removed. Been following up every three months. Recently found a small lesion on my remaining kidney. Doctor plans to watch it, and will do an ultrasound in November. initially I wasn't okay with the waiting game, but have learned somewhat to deal with it.

With the exception of one close friend (who's had breast cancer twice), I feel like nobody really understands how hard it can be to wonder if the cancer is back. Or to not over analyze every ache and pain. Telling me it's nothing, or to have faith, everything will be just fine......gives me no comfort. I want to rip their heads off....kinda sorta. :)

Here's the pity pot part of my post! Seems like rarely people ask how my follow up visits are going. I know the world doesn't revolve around, and in fact I have never been the person that likes to be the center of attention. Are people afraid of what they might hear? Don't really care? Caught up in their own lives? I had amazing support when I was first diagnosed, and shortly there after, so I know those people are out there.

Thanks for listening.
Valerie

MikeK703's picture
MikeK703
Posts: 235
Joined: Sep 2010

Hi Valerie,
Yep, that's the way we tend to feel every now and then. And I for one certainly don't want to hear that there's always somebody worse off. That's like my mom telling me children in China were starving when I wouldn't eat my spinach. I always thought, "that's too bad for those Chinese kids, but I still have to deal with my spinach." Now they're probably growing our spinach for us. You're allowed to feel sorry for yourself once in a while. And people do care, but like you said, they are either caught up in their own lives and problems or they feel uncomfortable talking about it because they don't feel they can say or do much to help. That's why we're here. To support one another. Now if they only had a support group for spinach haters!
Mike

Vagusto's picture
Vagusto
Posts: 86
Joined: Aug 2011

Mike
I have an awesome dip recipe that can hide the fact that it has spinach in it! Thanks
for making me smile.
Valerie

icemantoo's picture
icemantoo
Posts: 1466
Joined: Jan 2010

Valarie,

Lesions and cysts are normal on Kidneys. Most likely nothing to worry about. I am 9 years post surgery and they do turn up from time to time. As an RCC survivor they are probably being extra cautious in watching something that otherwise woukd be of no concern. Please do not worry yourself over this.

Brst wisgwe,

Icemantoo

niprut
Posts: 23
Joined: Jul 2011

Hi Valerie,

I can tell you without a doubt I over analyze every ache and pain. In fact, I am sure at times I even make them worse, then I stress myself out and create more symptoms. The waiting game is hard. You have earned your Pity Party, but be sure you know you won't be having it on your own. :-)We will all be there with you, any time.

Keep posting.

Jo

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

Hi Val,

I'd like to add "I can only imagine what you are going through" to the "I'd like to strangle you" list. Its not their fault, and they mean well, but people who have not heard those three little words "you have cancer" just can't understand what it is like.

I'm also approaching two years post surgery and still learning to navigate the murky waters that run between me and those closest to me that don't know what to say or when to say it. Its like everyone ignores the elephant in the room until "uh oh, its time for another scan" even though I've been stuck riding that elephant the whole time. Sometimes ya just wanna scream!!

Though I don't write here very often I visit regularly and find great relief/comfort in the stories of so many others that have been or are going through the same things. I am so thankful for the day I stumbled onto this site and the people I haven't strangled because of it should be thankful too, if only they knew.

This is a great safety net society,

Gary

Vagusto's picture
Vagusto
Posts: 86
Joined: Aug 2011

Hi Gary
Thanks for putting a huge smile on my face with your post! I think I just might start
an "I'd like to strangle you" list and tuck it in the corner of my desk. Not super far back in the drawer though as I'm sure I will be adding to it!!
Valerie

Vagusto's picture
Vagusto
Posts: 86
Joined: Aug 2011

Hi Jo
Thanks for understanding, and for being there.
Valerie

candoredo
Posts: 44
Joined: May 2011

Hey Val:
I hope you day today is going better. Yes, I would like to strangle some people too. I had my surgery in June 2011 so I am getting there too. Everyone from the technicians who treat you like a slab of meat to the friend who doesnt want to listen to your concerns. we all go thru the down times and want to go hide for a while. I have learned to turn my flustration into determination, THEY WILL TALK TO ME! AND THEY WILL TELL ME WHAT I NEED TO KNOW! or else. I sat in the doctors office and made him explain to me what these are and how do we deal with them? Friends are afraid to talk to us becasue the really dont know what to say. If only they would just listen, we dont need sympathy we need an ear to let out the feelings sometimes. that dreaded word Cancer is scary and we need to get it off our chest. I was diagnosed with a tumor on the kidney just a few weeks before my wife was told she had Breast cancer. everyone was concerned for her and for me, but really didnt want to hear about it. So you Sound off here anytime you feel like it, believe me it helps. There are people out here that know what you are going thru.

jona187's picture
jona187
Posts: 74
Joined: Apr 2011

Amen!

Vagusto's picture
Vagusto
Posts: 86
Joined: Aug 2011

My new friends
Thanks for listening and for being there. Does anybody also find it hard to talk to their spouse or
significant other about cancer?
Valerie

niprut
Posts: 23
Joined: Jul 2011

Hi Val, I have been lucky, my husband has been the most wonderful, supportive man on earth. He took on so much more than I ever thought he would have to. I talked to him about every concern and every fear for many months. He listened patiently and continued to support me. Then one day, not that long ago, I came upon this forum, and I decided that I no longer wanted to take him through EVERY concern and worry I had. Now, I can vent/release/ask here and give him a much deserved break. I will 'save' him up for any major issues in the future, and should I crumble and need him to listen and talk again, hopefully he will have renewed energy..

What about you?

Jo

Vagusto's picture
Vagusto
Posts: 86
Joined: Aug 2011

Hi Jo
My husband has been very supportive throughout this. However, I think after awhile he
wants to forget about the cancer and maybe somehow that will make it go away. Does that make sense? We did talk about it the other day, and I voiced that I feel like everybody wants to kinda avoid the subject, and that I feel like that big elephant in the room. He
thinks it's because I've had clean results for almost two years, and that people "assume" everything is okay. I told him that I hope to never be like that, scared to ask because
I'm afraid of what I might hear. I don't consider myself a selfish person, have always taken care of somebody, and want to make sure the people in my life know that I care.
Valerie

barbarbei
Posts: 9
Joined: Sep 2011

I can totally understand although I am not the one who got it. I think people don't ask just because they are all busy with their own stuff or they are afraid to ask. For the past several weeks, I cried a lot. Sometimes it makes me feel better if I just cry out loud. I am fortunate that I have a lot of friends. I kept calling them, and just told them, I need to borrow their ears. I came to here and post. People do listen, they do care. I also write my own blog, and my boyfriend will get updated once I post it, I feel I am just talking to him.

donna_lee's picture
donna_lee
Posts: 390
Joined: Feb 2009

So sorry you are having to wonder and wait.
After having Stage IV---kidney, L half of liver, set of nodes, plus the gallbladder removed, I thought I'd be home free. Each year after the first surgery in 2006, I had to have cancerous nodes removed. And in 2009, they thought it had entered the R. side of liver-3 CT's and an ultrasound in 5 months showed it was "just" an hemangioma. That's like a large strawberry birthmark, but in an organ.
I do know the stress of a cancer recurrence and the feelings that go with it. So far, I haven't found a solution for that feeling other than keeping so busy I crash by the end of the day. And I do get anxious, grouchy, and short tempered the closer to test time I am.
I have a CT on Friday, so don't make me mad in the next 2 days. This will be the first one in a year (had an ultrasound 6 mo ago.) And this schedule is because the oncologist thinks I've had too many CT's since I started this phase of my life.
All I can say is good luck, go have a Starbucks double/triple something, visit with a close friend and realize that we're cheering for you.
Donna

Vagusto's picture
Vagusto
Posts: 86
Joined: Aug 2011

Donna
I also have "just" a hemangioma on my liver. It hasn't changed in two years so I will go with that!!!! I sometimes get angry
and feel like I didn't sign up for this. When I was younger someone told me that God is trying to make me stronger. I'm strong....so enough
already! :). Hope you get good results from your scan, let us know!
Valerie

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

Hi Val,

In my life prior to RCC I was always the strong one, the advice giver, the decision maker, or the guy that could set emotions aside and do whatever needed to be done. Suddenly being forced to rely on others for literally everything was very difficult for me. My wife was like Wonder Woman through it all but I could not talk to her because she would say that she understood what I was going through, I wanted to scream. Perhaps instinctively I turned to this site where the stories of so many others finally helped me get comfortable with my own story, it took a long time. Now I feel able to give back and hopefully help others as I have been helped. It does feel a little strange being friends with so many people that I've never actually met though, crazy huh?

Gary

Ojosarco
Posts: 9
Joined: Aug 2011

Gary et el-
It was interesting reading your post as I'm the "organizer", "instigator" "caretaker", in the family and all of a sudden had to let go and be taken care of---a tough transition but I think I'm coming out of this a far gentler and more understanding person. My husband has been great but I feel badly when he comes home from work and I"m at the end of my rope. It really scattered both of us for quite a while. We've decided to take some time off this winter (my business is very seasonal) and just spend time together, heal, visit grandkids etc. Cancer sure sets your priorities. Now I'm slowly learning to share my story tho this former super woman still hasn't even told some people what has happened.
All a learning experience and I'll get there.
Thanks for the posts, encouragement etc.
Kathy

Vagusto's picture
Vagusto
Posts: 86
Joined: Aug 2011

Hi Gary

My hubby asked me the other day what I was doing on the computer. I told him that I
was talking to my "cancer friends". :)

I've always been the strong one, the decision maker (cuz I swear nobody in my family can make a decision). However, recently I've found that it's more difficult to do this. I think my Doctor took out my decision kidney!!

Valerie

KatfromFlorida's picture
KatfromFlorida
Posts: 66
Joined: Aug 2011

I just had my surgery this past Tuesday, came home from the hospital on Thursday and today I am completely miserable. Is this normal? I hurt all over, haven't gone to the bathroom in a week and just decided today was a good day to just cry. So I cried. My sweet boyfriend was rather befuddled cause all he wanted to do was watch midget wrestling ( OMG WHY?) LOL.
In the midst of all this chaos, my daughter and her family have moved out of my home FINALLY after almost 3 years, but since I got home, every two seconds she would ask me if I was alright until I was ready to scream..... Not her fault but sometimes I just don't want to think about this stuff 24 / 7 and I will not think about it once I heal unless its absolutely necessary.
Its either one way or the other I think for the family and friends, they either want to talk about it all the time, or don't want to talk about it all the time because they are afraid of where it may lead them.
I don't want to think about what might happen to me in the future, its not in my control. I don't intend to allow cancer to control my life this way. I can't allow it.... I didn't expect it to enter my life and it did but it doesn't mean I need to acknowledge it or recognize it as the demon it can be and ruin the rest of the wonderful years I have left. So if your family doesn't appear to be as concerned about it as you would like, maybe just breath and take a moment to remember that its not any easier for the people who love us to deal with either, they don't want to imagine lcoife without you and maybe they just refuse to allow cancer to be the center of their world either. Does not mean for a second that they care any less about you.... :)
Many many hugs and much love for your continued health and happiness.....
My best
Kat

Vagusto's picture
Vagusto
Posts: 86
Joined: Aug 2011

Hi Kat

Yes, feeling pain is completely normal. I think I remember reading that you had the robotic type surgery. Not sure what the recovery
is like for that. That being said, I'm assuming the cuts go through all the layers.My Doc compared it to a C-Section. I had a radical open surgery, tumor the size of my fist. The incision hurt for a LONG time, and 2 years later still smarts. I also had issues going to the bathroom. I took Senna for that. Also ate lots of prunes!!!! Just make sure you drink lots of water. Most of the time I don't want to talk about cancer. In fact, with my last scan in August, I told my hubby that I didn't want to tell anybody that they found a lesion. Just don't like to explain it over and over. I knew this "waiting" period was gonna be hard. Need to find a way to relax!!! Take cars if yourself, healing can take a long time.
Valerie

Katielynn
Posts: 61
Joined: Apr 2011

I'm sitting here thinking it's soooo good to find people here who know EXACTLY what's going on in our heads. Somedays I'm on top of the world, I don't give any of the past horror a thought (L nephrectomy 6-2-11) Other days I'm lower than low. I watch t.v. and get so angry/depressed with having to hear the word cancer mentioned so much. I swear before I was diagnosed I never paid much attention to how much that word is thrown into every magazine, newspaper and into t.v. And that new movie 50/50? I believe, infuriates the dickens out of me...That jerk shaves his head pretending to have cancer to attract women???!!!! Okay, off the soapbox for me..But I do feel as though my family wants to sweep this all under the rug and behave like cheerleaders, cheering that "they got it all Mom, why are you worried?" Well, I know they are in denial, and want to go on pretending like this never happened, but it did, and I'm still not over it....so yes, somedays when I'm all alone I throw myself a big Pity Party, and when It's over, I distract myself, get busy with something, anything, and go on. No one can truly understand what this is like unless they know first hand. It's scary, life altering and just plain horrible. I pray to God everyday, my faith I believe keeps me going. I also allow myself time for the blues along with "old me" happy, silly times. I'm told it takes time to heal both mentally as well as physically. Being an impatient person, it might make this process a little more difficult. So, anytime you want to vent, and have someone to lean on, I'm here, we all are...Have a GREAT day :-)

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