Just Being Honest

AnnissaP
AnnissaP Member Posts: 632
edited January 2018 in Kidney Cancer #1

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

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Comments

  • APny
    APny Member Posts: 1,995 Member
    While it's true that we focus

    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
    randyradiohill Member Posts: 67 Member
    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.

  • Srashedb
    Srashedb Member Posts: 482
    edited January 2018 #4
    Thanks

    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
    stevez Member Posts: 51
    Amen!

    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.  

  • Tapman63
    Tapman63 Member Posts: 137
    Truth!

    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
    daisybud Member Posts: 529 Member
    So true

    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
    Gtngbtr58 @aol.com Member Posts: 206
    edited January 2018 #8
    This subject

    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

  • Trucker1
    Trucker1 Member Posts: 82
    edited January 2018 #9
    The fear is real.

    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!

  • AnnissaP
    AnnissaP Member Posts: 632
    stevez said:

    Amen!

    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.  

    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!!! ;-)

  • AnnissaP
    AnnissaP Member Posts: 632

    This subject

    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

    I really hope you start to

    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.

  • Cybball
    Cybball Member Posts: 111
    Thanks and you are right

    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
    Mighty Frog Member Posts: 152 Member
    Yes! It s REALLY a MENTAL Struggling!

    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
    Steve.Adam Member Posts: 463
    Sharing feelings

    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
    Hd67xlch Member Posts: 151
    The secret is having a plan.........

    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
    APny Member Posts: 1,995 Member
    edited January 2018 #16
    "Lets be honest here, most of

    "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
    foxhd Member Posts: 3,181
    Many times

    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
    tango xray Member Posts: 26
    Sharing...

    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
    CRashster Member Posts: 241
    edited January 2018 #19
    The New Normal.

    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
    BoondockSaint Member Posts: 242
    The impact of this disease

    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
    Wehavenotimeatall Member Posts: 488 Member
    Thanks Annissa

    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