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Just Being Honest

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Hi all. I joined the group no one wants to be a part of last fall lol. I have appreciated every comment, positive thought and conversation. A lot of the surgery and recovery info proved to be helpful and true! For all of that, I am thankful. I have to say something I have noticed though. Nobody really talks about mental and emotional health on here. We are not superhumans!! Cancer and even non-cancerous tumors/surgery has effected us all and I am sure has changed our lives (even if you are the supporter and not the patient). It is a wild ride in the beginning and even after when we face the dreaded scans or even medication. I just want to say personally that I am here if anyone is struggling, needs to talk or just wants to vent. All of this can make you feel like you are in another world. Like your feet aren't even on the ground. Again, you all have been wonderful. This is just something I personally wanted to put out there. The fear, sadness, panic and loneliness is real. YOU ARE NOT GOING CRAZY AND YOU DEF ARE NOT ALONE!!!! Please talk about it! It helps. Much love.

Annissa

APny's picture
APny
Posts: 1998
Joined: Mar 2014

While it's true that we focus on the physical aspect of this awful disease we do talk about anxiety, fears, etc. We've mentioned how some of us relied on meds to help with the anxiety and depression, others found help with therapy. But you're right; the effects of cancer aren't just physical. It's completely changed me in how I react to aches and pains now. Everything is filtered through this dreadful disease and I no longer dismiss things as "oh it's just a stomach ache, I must have eaten something off." Now it's OMG, did it spread? It's no longer "I must have pulled a muscle," now it's mets to the ribs. You're right, the fear, sadness, panic, and loneliness is very real. And I too am here if someone needs to talk.

randyradiohill's picture
randyradiohill
Posts: 66
Joined: Aug 2017

I hate how my whole life now is seen through the "cancer filter."  It seems like I can't go through any situation or make any decision without thinking, 'okay, if I do this what will happen if my cancer comes back."  It's like an evil black cloud that is aways lurking right over my shoulder.  I try to remain as positive as possible and not think about it but it's always there.  Maybe it's still too soon to judge the emotions.  I haven't even had my first scan yet.  I'm hoping it will ease as time goes on but who knows.  I'm not sure what everyone else is doing but I'm taking more control of my body.  Doctors (including mine) wll tell you there's nothing you can do to change any outcomes and just live your life but I don't really believe that.  If it happens to come back, at least I will know that I've done everything I know to fight this thing.

Brock1969
Posts: 80
Joined: Jan 2018

I have my meeting today to plan the surgery, a partial neph, and I am big on quotes and inspirational things, I came across one that may help Randy: Unless I am some divine prince who was meant to be spared of all chellenges in life, this is the right challenge for me. 

My life has been more than blessed and will continue to be so. You are not a victim, rather a warrior who is ready to take on any "new normal" challenges. You've got this. Appreciate waking in the morning and taking on the day. 

I am a scratch golfer and I used to write on my golf glove "enjoy the chellenge." If I put the ball in a bad place, I would smile because it gave me a great opportunity to pull off a great shot...a challenging one. Take on this challenge with the same attitude and pull off that shot. 

 

-Brock

Srashedb
Posts: 482
Joined: Dec 2013

I think your suggestion is a really good one; I am not the patient but the spouse. I won’t call myself the caregiver because at this point in the cancer journey he doesn’t really need a caregiver.

you are right about the fears, stresses and craziness of the feelings surrounding the diagnosis and its aftermath. For me, it is like a tiny dark cloud hanging over us and I constantly have to turn my thinking around. The truth is that we do have a good life currently and that life does turn on a dime and we could find ourselves back at square one at any moment. I am painfully aware that this time will not last forever but it is more than the cancer. It is life itself and how fast the years fly as we get older. Our grandkids will not stay as accessible and engaging in the next 10 years. 

 I find myself recalling the young couple whose life lay spread out (or at least we thought it did); so, it is not just the cancer but aging (and, I am not that old). The scans trigger the fears of is it over now? Have we treated this too lightly?

i hope your post generates lots of discussion and I thank you for bringing it up.

Sarah

stevez
Posts: 51
Joined: Dec 2017

While these feelings do get talked about some, it's the mental aspect that hits me the hardest, at least now.  I'm told don't worry, stay positive, etc. etc.  And I really do try.  Keep coming back to "I have cancer" and "I've lost an organ".  It makes me feel less than for some reason that I can't explain.  I have to say I'm better post surgery, but I have a cloud that I don't think will go away.  I know others have it worse and of course I feel guilty for feeling the way I do about my illness compared to others.  I'm banking on it continuing to get better but I'm not the positive person I want to be yet, but I do work at it.  Prayers for all here.  

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

I believe we have been taught to say ...It could always be worse or other ppl have it worse... As if we like to minimize or disregard what we are going thru. Like we aren't as important or don't deserve the care. Maybe we are all guilty of this, but like Trucker said, we are entitled to feel the way we do. We deserve rest, peace, healing, strength etc just like the rest. This is our situation and it deserves just as much help as the next. I am not belittling what you said stevez, but let's recognize our situation for what it is. A huge, life-changing one!!! ;-)

ImNotDeadYet's picture
ImNotDeadYet
Posts: 244
Joined: Apr 2017

Very well said. Yet still hard to resolve practically. What I know in my head, and what I think about whenever I discuss it are two different things. What gets me is, I'm upbeat most of the time and am usually able to joke about it. On the rare occasion when I communicate my fears, I get shamed for not being more positive. People mean well, but unless they've been through it themselves, many just don't get it. 

Tapman63's picture
Tapman63
Posts: 137
Joined: Dec 2017

I'm not nearly as far in this journey as most of you are, but already it's been such a wild ride of emotions.  Just hearing the "C" word makes everything different.  Even if it's a best case scenario, I think it changes your outlook - it sure has changed mine.  The biggest shock is the roller coaster or emotions I've been on.  A couple of days before Christmas I was in the grocery store and started crying just thinking about the possibility of this being my last Christmas.  I was listening to "Bohemian Rhapsody" and started crying when they sang about not wanting to die.  I do have a little more peace of mind since the CT scan came back and said my organs were unremarkable.  I've never been so happy to have boring body parts.    I know I have a long way to go and many more ups and downs to experience - I'm just grateful that I found this group of people - really the ONLY people that can understand my craziness and fears.

daisybud's picture
daisybud
Posts: 506
Joined: Jan 2016

The emotional aspect of this is far worse than the surgery and recovery ever was for me.  Yes it the surgery was rough but the constant worrying about every little pain is hard.  So true Apny!  That's why i read this site every day.   Helps me to know that there are other people who get me and feel the same way. I have had flank and side pain on the same side for 3 weeks.  I had ct scan Friday now have to wait for results.   Needless to say I am scared now  also had blood trace and wbc in urine test.  Randy- totally understand the cancer filter  I am the same way. 

This definitely stinks but this site has been a god send for me

Gtngbtr58 @aol.com's picture
Gtngbtr58 @aol.com
Posts: 206
Joined: Oct 2017

Really hits home.  I am so depressed and am having a hard time functioning.  Nothing seems to matter.  Everyday I say tomorrow will be a better day..... doen't always happen.  My anxiety is off the charts.  I just want to be my old self.  Best wishes to all

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

I really hope you start to feel better. I don't think I will ever be back to my old self again. I am learning to live and navigate thru my new "normal". Slowly getting to know my new self because this has changed me.

Trucker1's picture
Trucker1
Posts: 82
Joined: Sep 2017

I agree totally..It has changed my way of thinking. It is always in the back of my mind. I feel as if I have more better days than bad so I'm thankful for that but the mental struggle is real. I have no magic words for anyone but that we are entitled to feel however we need to in the hope that we can get a grip on the mental side of this disease. Don't compare your real life to someone else's "facebook life" be ture and honest with yourself,  your loved ones, doctors and people on this forum. Try daily to do something or be with someone that brings you joy...Cut loose, forget responsibility's (for a few hours) smile, laugh, help someone else, take a ride, eat a great meal, meditate- One of my favorites things now is to walk and talk with the Lord , it helps to clear my mind and get the  sometimes ugly thought out of my head..

Just don't let it be all you think about all the time that's my goal and to me that's winning or taking control of the situation!

I pray for you all regularly and wish all the best to you.I too am available for conversation if anyone needs a little redneck logic!

Cybball
Posts: 111
Joined: Nov 2017

Thanks and you are right about the mental side of this.   I’ve really been working hard to focus on the good things in life and in others.   this forum really has helped keep me positive.   First week after diagnosis was really bad.  

Mighty Frog's picture
Mighty Frog
Posts: 152
Joined: Jul 2017

Had mine LPN surgical on July 2017. Mananged to puzzeled back my life after 3 months from the surgical but started mental struggling recently... what to eat and what not to eat? Everyday have to go through these same questions over and over and everytime its remind me, I have "C" ....... Always feel I'm different and been cursed. Is VERY tough.... TOO many worries.....

Finally, one fine day, while jogging..... something pop up into my mind (I think i read somewhere b4)..... "Focus on those things I have control on rather than things I have no control" From that day, I focus only on how to keep myself alive and prevent "C" from coming back...... as keep worrying and regrets totally have no point and waste of energy.....

Yes! We can't change the past outome but we are still alive now, so we have the opportunities to change the coming outcome....... its in our hands now.... all we need to do is to embrace a New set of mindset and keep worries free.....    

Well, my 1st scan is just around the corner......

 

 

 

Steve.Adam's picture
Steve.Adam
Posts: 463
Joined: Oct 2016

It is not always easy for us to recognise and connect with our emotions.

One excellent reason for expressing our feelings is to help other people to know how they feel and to properly experience their feelings.  Actually, I think that is really important.

Steve.

Hd67xlch's picture
Hd67xlch
Posts: 152
Joined: Apr 2016

We are all going to die from one thing or another, some sooner some later. I learned a long time ago that worrying about it doesnt help anything and will probably take time off your life. Even after all Ive been through and Ive been through some really major surgeries, here this morning Im getting ready to go to work and do the same thing I did before I even knew I had kidney cancer back in 2011. I feel no different, I look a little older, but I have a plan.  I have to come to this board to remind myself I even have/had cancer, its only something I think of come scan time. I live life to the fullest I smoke, drink and party like everyday is my last, but what gives me the ultimate peace of mind is knowing that when and if the time comes, where a sickness will overtake me and cause suffering, I have the power to end it all instantly and that has given me peace in life.

Lets be honest here, most of us are not scared of dying we are scared of the process of dying, thats the fear you need to overcome.

"He who makes a beast of himself gets rid of the pain of being a man" cant remember who said that but its worked for me.

Good luck to all

APny's picture
APny
Posts: 1998
Joined: Mar 2014

"Lets be honest here, most of us are not scared of dying we are scared of the process of dying, thats the fear you need to overcome."

Yes, you are absolutely right. I'm not afraid to die. I'm afraid to die of cancer because that is not an easy death.

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

I've tried to shift the topic from the disease to the impact upon our daily lives. But most posters are new and do not see past the acute stages of dx and surgery.  I've caught flak for jokes and other posts being told it was inappropriate or insensitive. But the world for us longer term survivors, comes with a broader view of life.  Whether it is ourselves, family or friends, living with cancer is a reality we deal with long after the scabs fall off.

Don't care if radical nephrectomy leaves a scar. Don't care to try correcting diet that isn't responsible for our cancer. What I care about now is my family. I went from a high profile medical career with $ to match to draining our finances . I may have survived so far but I'm putting my family in poverty. So, am I really a winner? This joke is on my wife who has also had to give up her medical career and all we accomplished together. Totally unfair. It's a tough topic to impose on stage 1 or 2 people worried about being NED.

Through it all I'm still a care giver. After 40 years in medicine I've seen, learned, and done a lot. I understand policy and protocol, and practice issues. Seldom do issues arise that are truely unique. Members in their 1st or 2nd year post nephectomy could be more involved in sharing and supporting each other but often only come around when they have scanxiety. I'll bet only 1 in 10 stay around to repay to others what they recieved in help.  Believers in God may not find an  issue, but believers in Karma do. You can share Karma and it grows. You can also deplete it by only taking. That hurts all of us. You now know 100% of my religious beliefs and committment.

I try to promote the power of positive thinking. Spin doctoring almost anything. Even in a losing battle, loved ones want good memories of their mom, dad, or sibling after death.

I also describe living with cancer like having a song stuck in your head. The thought never goes away. So choose a happy catchey tune and put it into your head. I like xmas songs. Especially when I get people around me whistling "I'm Dreaming of a White Xmas," in july!

Annissa, you've been a wonderful influence to everyone. I hope you continue to lead by example. Every day that I sign on and see your picture, my day has improved. That's Karma at it's best.

 

tango xray's picture
tango xray
Posts: 26
Joined: Oct 2017

I am guilty of just logging in, reading and not 'participating' ... I was thinking I had no words of wisdom, experience, etc. to offer as a 'newbie' but you are right, we are all dealing with the emotions that come with a cancer diagnosis. And sometimes just talking about them can be therapuetic. 

I have appreciated all of the information found in this forum and as a believer in karma will be more involved as a way to pay it forward.  

Wishing you all a fantabulous day!!!

CRashster's picture
CRashster
Posts: 239
Joined: Mar 2017

Cancer sucks. However, it has made me live life with more urgency. I do more now. I say yes instead of saying no. I've called in alot of favors. I've seen bears, I've hiked mountains, taken more weekend vacations, been to a NASCAR race. Yes, I have the PTSD type moments. But, living like you know now that you're going to die, makes me feel like there is no time to waste. I'm living now like I always should have been.

BoondockSaint's picture
BoondockSaint
Posts: 242
Joined: Mar 2017

The impact of this disease definitely has a broad reach. It does not care who you are, your financial status, race or religion. That's why its so disgustingly ugly and in turn has the mental impact that it does.

I know my wife has had her moments but you would never know it other than an occasional joke.

For instance......right after DX when people are reaching out with help and well wishes, one common thing people would say was "If there's anything I can do, let me know"

Her response was always "Give me a kidney". Haha

As stated above, a positive attitude is good medicine. 

I'll always be here, reading and posting and helping where I can.

best wishes to all.

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

it Is very very tough

I have just had a terrible terrible week

Got through the surgery and a few minor complications and  I thought I was really starting to pick up

However have had two weeks of not feeling good with much pain and terrible headaches 

of course I am in major panic mode thinking brain mets but Surgeon says no.. Chromophobe doesnt go to brain first he said unless mass much bigger

 

I have struggled badly as  i don’t want to upset anyone so have to deal with it on my own( lOST my husband to cancer)

I dream that I am dead

or dream that everything they said was wrong and it will  already  be growing  back

 And yes I am very much afraid of dying

 

I hope it gets easier

 

I dont know if men are more capable of pigeon holeing   Their fears but they seem to panic less

in fact they are probably  doing it the right way

 

 

How is work going

Annie

 

Steve.Adam's picture
Steve.Adam
Posts: 463
Joined: Oct 2016

Hi Annie,

I want to know everything about your situation. At least anything you want to tell me.

I think eveyone who reads this forum is genuinely interested in everything related to kidney cancer, survival, recovery, coping etc.

So anything you want to talk about is welcome here.  Good... Bad... Anything.

About fear...

Not too long after I was diagnosed I had a pleasant experience. I was out walking and feeling very agitated. I actually started pacing up and down the street without being fully aware of it. There were two horses in a paddock next to where I was pacing.  They saw me from about 50 yards away and ran up to me.  That broke my anxiety and a very strong feeling came over me that everything would be ok. I don't know where that came from but I decided to just believe it and I have felt that way ever since.

When I saw the horses they were looking at me from a distance. I said 'well, come on over', but not out loud. And they did! It just put me in a good mood right away.

Steve.

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

I love  you

 

another bad day

GP won’t send me for head san because Consultant  says no chance of mets

 

I  like  and trust consultant but something is causing this pain

 

Annie

 

 

donna_lee's picture
donna_lee
Posts: 999
Joined: Feb 2009

But not always.  This past 4 months of testing, waiting, nor being informed of the why and the results in a timely manner, the utter lack of coordination of departments at the hospital with the oncology center, and the fact that one test seems to beget another for a non-cancerous issue found on the CT's (plural-3 of them).

As I told the oncologist, it was worse than the original diagnosis.  No one seemed to want to tell me the truth and it made me livid with anger...which made me cry.  Then I came to the conclusion that many just wanted me "to not have feelings", and just put on my big girl panties and get on with it.

I still have no idea what was in my lung, but it's not there now.  When the Onc. saw the report-"Because it was good news, he didn't feel that he needed to call me."  That was good for him, but lousy for me bacause I didn't have that information. So I created quite a commotion at the Cancer Center in an effort to obtain the info before I went into another weekend.

So within the next 2 weeks I have an endoscopy and an US of my breast.  Whis is just two of the Begats.  Who knows what will come after those tests.

In any event, they will not mess with my scheduled VACA with Son and his family when we all go to Cabo later this year.

And that is Cabo, not CABO.

Hugs for now,

donna_lee

Steve.Adam's picture
Steve.Adam
Posts: 463
Joined: Oct 2016

Hugs Donna,

I guess the medical industry develops procedures, protocols, processes for dealing with disease.

Yesterday I was seeing a Urologist. He was out of the room for a few minutes so I looked around the consulting room.

There were some small posters on the wall as reminders to medical staff. I hardly remember them, but one was a short cheklist of bullet points with a title something like 'Are you really finished'. One of the points was something like 'Did you inform the patient'. (The text was something else. I don't remember it. But it was something similar.)

If reminders like that are required then maybe sometimes the protocols become more important than people.

I must say that the young urologist I spoke to yesterday was excellent.

Steve.

rdoyd2
Posts: 80
Joined: Aug 2016

The anxiety is the hardest part. I was ok , I thought the first three years after diagnosis but the last year my anxiety has been horrible. 

But im working on it and I think I'm getting past it. find something that is relaxing for you. I like to sit and watch my chickens and have a couple beers and try to not think of the big c word. Spending time with my grand baby is the best medicine for my anxiety about it. When I'm with her it just goes away.  I don't think I will ever be the same person I was before as far as anxiety but it will get better. I have thought about meds for it but I'm going to try to get through it on my own. we are all going to die, everyone on this planet, those of us that had cancer are just more aware of that. we need to try to not dwell on that as much and then we will feel a lot better. It's hard but I'm trying. I will not let it bring me down.

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Wow! Annnnnd the flood gates have opened!!!! This is so amazing, reading all of this. I am so proud of "us". THANK YOU for sharing. Who knew you all felt this way? I certainly didn't! Wehavenotimeatall...I dream too. Putting myself somewhere other than where I am takes away the pressure and makes me feel a bit of relief. Even though I prob won't do what I dream of, it is still a moment of "escape". Work is just ok thx for asking. I came home after my 1st full shift and cried. I was so sore I could barely stand up straight and I was mentally exhausted. I took the next day off and contemplated quitting. I am all over the place right now with thoughts and feelings. Not sure if I am comin or goin lol. Cancer has def thrown a wrench in my life. In every aspect. Fox, you are amazing. Your words are so well thought out and meaningful. I hope most here don't disappear as well. I personally know that this isn't over for me even though the surgery is. Thank you for what you said. I truly appreciate it. I feel for all of you that are depressed, anxious, are having money issues, relationship issues and/or ongoing health issues. I am sorry that I do not have any easy fix or solution. I only have the one thing that we all do right now.....TODAY. Yesterday is a memory and tomorrow doesn't exist. All we need to do is take one step at a time through now....our reality. Breath deeply. Take in the moment. Listen to what is going on around you. BE...IN...THE MOMENT...For today we have life <3

Angiebby75's picture
Angiebby75
Posts: 209
Joined: Aug 2017

I am for ever changed. I think about all the little things I use to worry about prior to Dx. Like one of my teens crazy style of clothing.  It all seems so frivolous. My dreams of things I want to accomplish in life has changed . I just sometimes don’t know where to go from here in thought and life. I don’t look at the future the same. I know I am blessed to have found mine and removed  early and “NED” “NEMD” with my first scan after surgery.  My husband and I are the only ones in my family who knows the true results after pathology . I don’t think my family really understood it all and didn’t want the holidays to about my this journey. I don’t sleep well. I have crazy dreams. But I am trying to be positive and not to focus on it. But I think about it all the time. I hope in time it will get better. Many times I dont post because. I don’t want to seem like a downer and I know that some people have it worse than me.  Sometimes I don’t know what to say. Sometimes I don’t even know how I feel.  I am thankful to be a part of this group. With so many articulate, wise, and inspiring warriors in this journey. 

MelBlessed's picture
MelBlessed
Posts: 71
Joined: Aug 2017

Wow, so many of us with the same anxiety and feelings.  I have been a healthy Registered Nurse for 25 years and this cancer has thrown me for a loop.  Anxious about everything! Never had a second thought about aches or pains, now when my back aches I’m sure it’s Mets.  I have a panic attack if I need to take a cold tablet and couldn’t take pain meds at all due to panic attack. I have anxiety medication, but even get anxious taking it so I break it in half. The worst part is everyone thinks I’m fine because the cancer “is gone”.  I am very blessed to have caught this early, have good insurance and wonderful husband and coworkers but they just don’t understand. I’m very private so it feels good to get this out there. Thank you to everyone who shares so much on this site.

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

You are so right and that is one comment that drives me insane. People say...I am so glad you are better!! What? Wait? Did I say that or are you assuming it because they took out the cancer and I look healthy? I am glad you all understand because other ppl certainly do not. I am so happy people are opening up on here!!!!!!! xoxo

klj15's picture
klj15
Posts: 38
Joined: Jun 2017

I hate the words cured and gone. My cancer was very large (stage 3, size of a football). I had a radical neph on 03/20/17. I have heard from admin folks at the medical group that was treating me that they could not understand why I wanted consults with x, y, and z because I was cured. I don't have cancer, nothing special needs to be done for me. It honestly makes my blood boil, and adds to the anxiety I am already dealing with with this mess. Yes, we get surgery and the cancer goes away. However, there's always that chance that one cell was left/missed. The chance that we may be "fine" for a few years, but then cancer rears it's ugly head again.

I started working from home about 5 weeks after my surgery, and returned full time after 8 weeks. I have been dealing with occasional pain, sheer exhaustion, anemia, low vitamin D, and general illness from my immune system being a little low. It's funny how quickly people forget what we have been through, what we continue to go through, and what we may go through just because we "look good" or go about our daily lives because we have to.

I am thankful for this forum and the one on SmartPatients.com too. Great information from other people dealing with the same/similar issues and conditions. We are in a club that no one else can truly understand until they are part of the same club.

rdoyd2
Posts: 80
Joined: Aug 2016

Angiebby75, I also feel like my family doesn't understand or doesn't care but I think it's not that but rather they feel very uncomfortable and awkward about the issue and don't know how to talk about it and would rather just pretend it didn't happen and go on like nothing happened. That I wasn't effected by it or that it doesn't effect me.its been a little over4 years since my neph and my wife thinks I should get over it that it's all over but the mental part doesn't go away. It is amazing how so many of us have the same feelings and have been having the same mental issues. I used to feel like there was something wrong with me that I should just get over it that it was nothing that I was the only one that felt this way. I now know that I'm not alone and there are others that have the same feelings . I quess in a way we all are normal.

rdoyd2
Posts: 80
Joined: Aug 2016

Melblessed, you just described exactly what I have been feeling and dealing with . I too have anxiety meds that I don't take. They are there in the cabinet but I can't bring myself to take them. I was a firefighter and emt and have been in some very horrible situations and never had anxiety Never worried about aches and pains or anything.

rhominator's picture
rhominator
Posts: 233
Joined: Nov 2015

FYI: Our forum averages 12.202 responses per topic. That appears to be the highest of all the discussion forums on CSN. 

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

of the activity I've seen here despite my nagging. My wish for the future is that this network has old friends keeping an eye on each other and most newbies experiencing the cure.

 

Hoss79's picture
Hoss79
Posts: 78
Joined: Nov 2017

AnnissaP THANK YOU for posting this. I had a post typed up a few days back about mental recovery after the diagnosis and surgery, but never posted it because I didn’t want to put that out there. I’ve had some good days and quite of few bad days mentally. Every little pain I worry about. My stress and anxiety are through the roof. I knew it was going to be difficult but I didn’t think it was going to be this bad. I have my first post op scan next month. I will be a wreck, but hopefully ease my mind a bit.

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

I find the "after effects" worse than anything. It's cancer. Let's remove it. Ok Annissa, go back to life now. NOT THAT EASY. I think it is an awful experience and one that lasts because of follow up scans and everything else. Just something that is with you long-term. This might sound crazy, but I wouldn't trade it for the world. I have learned so many priceless lessons throughout this and it has definitely changed me in a way I could never have imagined. Like gold tried by fire. I have come through and shine even more now!!!

stevez
Posts: 51
Joined: Dec 2017

This thread and reading about everyone's thoughts/fears/anxieties has helped me tremedously.  I honestly thought I was "unique" in that.  Those closest to me seem to think that it's over and I should be moving on.  I can't, and don't need to, describe the mental anxieties better than you all have already said.  It's just comforting to know that I'm not alone in those fears.  Thank you!  Steve

sasha_jax4
Posts: 43
Joined: Dec 2017

I am the caregiver of my parents, my 4 kids. I work, I’m in nursing school. I don’t have time to have cancer or be sick. when they told me about tumor like a good student I read reports of imaging knew it was likely rcc. I was planned it would be removed over winter break from school and return to work 2 weeks after surgery because I’m strong. Omg I think it was coping mechanism. I had it so wrong. Week 3 I’m easing back to work because I can’t afford to be off. Week 4 I go back to school. I’m so not physically and mentally ready yet. I’m frustrated because I was tiny stage 1 rcc. So lucky. Life intact, but yet it was a whirlwind and back to my stressful life I go. I worry it could come back or that one of my beautiful 4 children will inherit some unlucky DNA. My cancer found by accident, what else could be lurking? So glad you touched on this!

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

I am so thankful for all of the posts here. I am really happy we have opened up and now know we are not alone in our struggles. It can be frustrating that people really don't understand our situation and feelings. I mean right to the core of it. But we all do because we have been there or are there now. You guys are amazing!!!!!!!!

APny's picture
APny
Posts: 1998
Joined: Mar 2014

And you're pretty amazing yourself :)

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Thank you!!!

tango xray's picture
tango xray
Posts: 26
Joined: Oct 2017

I received a 'get well card' after my surgery with a note saying they knew exactly how I felt since they had a kidney stone one time.   

I too am a pretty private person.  I have friends and even family that don't know of my diagnosis or know that I recently had surgery.  It seems almost 'easier' if they don't know.

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

A kidney stone? Lol that cracks me up! People really don't get it. Can be frustrating at times. It is not a 1 and done scenario! Like I said before...Life changing. And yes klj15 it for sure can come back so we have to live with knowing that. It isn't like "Oh you had a cold? Glad it is gone and you are feeling better." That is how most talk about our situation. Tango you are right. Sometimes it isn't worth the breath explaining it to people. Most reactions are ridiculous anyway. 

kiwi68's picture
kiwi68
Posts: 110
Joined: Oct 2017

They don't get it, but I think there are two things, often people dismiss things because they want it/you to be ok.   They also like to look on the positive side.  I think there is a way you don't have to say I am great', ok, you can say that you are progressing, getting there, still not 100%, I guess it depends who it is.  I didn't get a lot of anxiety pre op, but there was one night where I was thinking, well it's small RCC, found early, good surgeon/medical/insurance and a 90% survial rate in 5 or so years and that made me really depressed.   I voiced this concern to my husband of 22 years.  Not a sensitive new age guy.  He is like, 9 out of 10 is great.  What are you worried about. Oh I don't know - 3 kids, the dog, the fact that no one seems to know where the toilet paper is kept... and I said to him ' What if I told you there is a 1 in 10 chance your dinner tonight will be a complete bust, burnt, cold, vile'.  He loves his dinner, highlight of his day.  He joked back i must not be  cooking fish, (cause the odds of it being bad would be so much higher than 1 in 10).   OK, a bit random, but it highlighted to me that the anxiety part can be a really destructive to an otherwise 'normal' day and wanting or needing people to share it with you can sometimes be hitting you head up agains a brick wall.  And when people who we are close to (or just random strangers) make assumptions about how we feel or should feel it can make us so cranky and put out and in quite a state. 

Obviously my story turned out differently it wasn't an RCC and the surgical removal of the tumour is considered 'curative'.   I stll have some unaswered questions, how come no one followed me up after the kidney stone in 2016 - the mass was marked on the scans.   Have I really enquired enough that I need NO follow up at all. It was a quick call with the surgeon, he was delighted.  Should I take that at face value? I never saw a written report.  Those kinds of things.  I have decided that there isn't any further need for me to hound the medical profession on this subject, I will check my file next time I see the GP,  but it does and has highighted to me how much the mental aspect of anything is a big part of the suffering and recovery.   Ironically for many with a small RCC there are zero physical ailments until the actual surgery!   

BTW went to pilates today, the teacher was irritating in the extreme, I was puffed it is 100% humidity here at the moment and I had overdone it clearing drains and gardening.. we started a difficult ab exercise and I was stumbling (because i am unco as well)  and she said 'you don't have any problems do you' and I was quite cross and I said, 'well apart form having some kindey removed, no' and she was 'oh well thats not bad is it'.  Dipstick.   And then I gave myself a little talking to to get over myself and get on with the class and get out of it what I came there for and not let her ignorance (and I don't expect her to be an expert on kidney crap) but she was actually a bad teacher for a lot of other reasons.  It highlighted to me that I need to own how I respond in situations, I can't have other peoople react how I think they should. Lol.   After the class she came up to me (everyone else was a svelte 20 year old, I got 30 years on them) and goes, 'you did great, I guess it's was just like when I got my boobs done.'  What the?  Shakes head and goes to the car. 

ImNotDeadYet's picture
ImNotDeadYet
Posts: 244
Joined: Apr 2017

People definitely try to be supportive - or think what they're saying is supportive. And on the surface, it might be. I have a FB group for my friends who want to keep updated about my progress with this. When I post some new news, I get a lot of supportive comments: "We've got  your back," "You're gonna crush this thing," "I'm betting on you to kick cancer's rear end," etc. And I do appreciate that. The reality is, I'm looking at a shorter life than I may have originally planned. Yesterday my doc said "years, not months." When I pressed her on this, she said probably less than 10, but that depends on how the medication I'll be starting next month goes. Some people can stay on it 10 years or more with no recurrance after the meds shrunk their tumors. Some others may be on it for a few years before it stops working. For others, it may not work at all. So I could be around another 10 years or more, or I could be gone a lot sooner than that. It's hard to convey, even to the most supportive friend, how it feels to hear that news. It's hard enough for me to process this, let alone expect someone who's not going through it to understand the nuances of what I'm feeling. 

Sal7864
Posts: 52
Joined: Nov 2017

Agreed, this has taken a lot out of me as well. Then I have the constant fear of the cancer someday returning. Also , will I ever return to normal after this. I have my doubts 

Having this disease messes with your mind for sure.

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

And yes, the ride is a wild one, to be sure.  Regardless of the outcome.  It changes our lives, some profoundly, some not so much.  I truly think if we are lucky enough to find each other on a forum such as this, we have an obligation to share in an effort to help each other where we can.  I always say I only wish I would have found this site before my surgery, it would have been SO helpful.

Thank you all!

Donna~

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

I might be a little crazy... Just sayin

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