Just Being Honest

Steve.Adam

I want to know about you

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.

donna_lee

There are Bad Times at Black Rock

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

The Medical Industry

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.

ImNotDeadYet

AnnissaP said:

I believe we have been taught

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!!! ;-)

Totally!

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. 

Wehavenotimeatall

Steve.Adam said:

I want to know about you

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.

Ahh Stevie Baby

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

 

 

Brock1969

randyradiohill said:

You're absolutely right

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.

Strength

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

rdoyd2

The anxiety is the hardest

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

Wow! Annnnnd the flood gates

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

Angiebby75

I am for ever changed. I

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

Wow

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.

rdoyd2

Angiebby75, I also feel like

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

Melblessed, you just

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.

AnnissaP

MelBlessed said:

Wow

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.

You are so right and that is

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

rhominator

Good support from this group

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

foxhd

I am proud

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

AnnissaP THANK YOU for
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.

stevez

Thanks!

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

Anissa you rock

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

Hoss79 said:

AnnissaP THANK YOU for
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.

Hoss79

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!!!

AnnissaP

I am so thankful for all of

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!!!!!!!!