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kidney cancer paralyzed with fear

val1963
Posts: 27
Joined: May 2013

I need a group hug or maybe a kick in the pants today!   My surgery is June 5th.  When it was first scheduled that far out I was releived, time to take care of things, second and third opinions, etc.   Now the waiting is crippling me. I am so full of fear and anxiety Im not sleeping, waking up sobbing and have called off work 2 days in a row!    aaaaaaahhhhhhhhhhhhhhhhhhhhhhh      What happened?  I was doing so well considering!   

Eims's picture
Eims
Posts: 423
Joined: Feb 2013

val1963 that is completely understandable and to be expected to be honest.  the thought of it is worse than the doing!!!  what helped me was walking and red wine!!  seriously walking helps and it gives you head space and it will help you sleep better....give it a go xxxxx

eims x

val1963
Posts: 27
Joined: May 2013

Thank you so much Eims!   I am not at all comfortable with this scared me!   

I found the help with coping site and am making an action plan.  

Spending way too much time in my head, need to find a way out of there!   

I am very grateful for the hugs and the advice....    getting off my butt and out of my head!!     THANK YOU!

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Hi Val,

I waited 6 weeks for my op, it is very difficult trying to keep your head on straight. I kept myself occupied as best I could, and I pushed the problem as far away as I could get it. Obviously it is difficult to avoid the stress and it is a frightening prospect, but you have to try not to let the fears snowball. I used a lot of techniques to help me stay calm and relaxed, which helped me through. Remember,we have all been there and felt the way you feel right now, it is perfectly normal.

You will come through this though, it will not be long before you are back on here giving the benefit  of your experience. Stay strong, we are all here to support you when you need us.

All the best

 

Djinnie x

val1963
Posts: 27
Joined: May 2013

Talk about testing a person! For 6 long weeks you know the enemy has infiltrated your body and all you can do is wait! 

UUGGHh      thank you for the support!  Valerie

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Hi Val,

There were indications of problems from scans in December. I had to get hold of records from the States relating to my last surgery for comparison, and I also waited for an IRM to get a clearer picture of the tumour, the op was then booked for March. As this is the fourth time I have had cancer and my second kidney cancer, past experience had taught me not to rush anything until I have all the right people in place, and the correct surgery lined up.

Even though it was a bit of a wait there was little danger of anything changing in that time. The week of the surgery I obviously became anxious with anticipation, but on the day I was calmer than my husband. I made myself a promise .. that this would be my last issue with cancer.

 

Djinnie

alice124's picture
alice124
Posts: 898
Joined: Mar 2012

Val - Hope the sun is shining where you are. and  you're able to get out, breathe some fresh air, pay attention to the tweets from the birds (not IPhone), and recognize all the beauty that surrounds you.  We are all guilty of taking so much for granted,  and I'm a firm believer that sometimes we are given a medical crisis to remind us of all we have to appreciate in life.

I, myself, do not have cancer but that doesn't prevent me from having days when I'm frightened out of my skin for my husband, and I have to remind myself how very fortunate I truly am. And the same is true for John. We both realize that had he been given the same diagnosis ten years ago, he probably would have been sent home to get his affairs in order. That's no longer the case; thank God. 

Another therapy I use on bad days is to read the Kidney Cancer Chronicles by Chris and Dena Battle. Chris has gone through so much in his battle, yet his sense of humor stays in tact. If you haven't had a chance to read his blog, here's a link:

http://kidneycancerchronicles.com/

 

Beyond, that group hug  is on the way.

 

 

val1963
Posts: 27
Joined: May 2013

Special thanks and many blessing to you Alice for taking the time to send sunshine and support to a stranger when you have so much on your life plate yourself!    I really appreciate the words and the hugs!  

the sun has been shining here today along with some rain and i enjoyed every mood mother nature sent.

I sat in the grass, enjoyed the sun,  played in the rain and through mud bombs at my fence!  i'm sorry I called in to work but I'm not sorry I experienced this day!    Thank you for the link, i will checki ot the blog asap!   

Hope to see you again soon!   Wishing you and your husband many many years together!   Valerie

 

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

Until you face that dread, willingly and embrace it as the solution to the problem, it will remain faceless and nameless. Until you look that date in the eye as the day you kick this cancer's ***, it will control you. It needs to be the other way around.

I had those times myself where the fear of not knowing what there was to fear tried to paralyze me.  The dateof surgery will be the day you finally understand WHAT you are facing.  Take back control of your fear and your life.

You are bigger than this and with knoledge you can cope with whatever it hands you.

I've found this quote to be helpful:

No passion so effectually robs the mind of all its powers of acting and reasoning as fear.

EDMUND BURKE, On the Sublime and Beautiful

val1963
Posts: 27
Joined: May 2013

i am hanging this quote on my mirror, on my desk at work and in my car!    

I am a believer,  knowledge is power and the folks here have taught me a lot!    

i'M OK,  I'M GOING TO BE OK!!     Bless you!

keithhubbert's picture
keithhubbert
Posts: 14
Joined: May 2013

I think the worst is waiting, fear takes over when you think too much. You start counting the days till surgery. Your mind starts to think of all the bad things that could happen, then you start to think all they have to do is cut it out and its gone. And these are experts that do this all the time. I have been trying to move my fear to trust, in God, and these doctors. Things that I have not done before. My surgery is May 29th, for a mass on my left kidney, with the di vinci robotic machine. I have not met the doctor yet that will be operating on me. But I"m sure that the VA has great doctors.  I got 7 more days till this fear is gone and trust that everything will be fine for both of us. I"m 50 years old and have alot more to do in this life. This has made me open my eyes a bit more to see things better. Good luck and God bless.

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

Look at the surgery as the date you finally get a handle on what you are fighting. Until then everything is guesswork at best. Once its out, it can't spread, it can't do anything else to you! Embrace the day and look forward to it!

val1963
Posts: 27
Joined: May 2013

Thank you for the wisdom MD...    I intend to kick some rabid organ butt!!!    

Living in fear is new to me,  I don't like it so I guess these two days are the end of that chaptere!   

I owe a boatload of gratitude to the folks here!!   Thank you

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

I personalized the little sucker! I called it names and told it how many days, hours and minutes it had left to torture me! On more than one occasion I told it it's parents weren't married!

Hahaha

Whatever it takes to get you to fight the fight is what you need to do.

Praying for you and I'll be here to cheer! Get it done!

Michael

val1963
Posts: 27
Joined: May 2013

Thanks MD!   i  stood in the rain and threw mud bombs at my fence today!  Every one of them was a tumor and I was anniliating them.   Silly but incredibly theraputic.     

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

I did this by increasing my running which was symbolic for leaving my cancer in the dust. This spring I spent much time destroying many plants, bushes, shrubs and hemlocks my wife had planted. I cut, I trimmed, I dug up so much stuff in my minds goal of "properly " maintaining our property. She was not happy. Alot of my work looks like crap. I couldn't stop myself. Then one evening it hit me. I had to eliminate any and all dead non productive and old yard cancer. Something I kind of had control over. It was also very symbolic and therapeutic for me. I told her of my relevation and she was less mad at me.

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

Mud-bombs are good!  I like that!  As I said, I personalized mine and talked to it!  I called it names! I made the fear tangible and then belittled its ability to frighten me.  I made sure it knew that I was in control and it was going down for the count.

val1963
Posts: 27
Joined: May 2013

Keith,

Thank you and God bless you!   I will be looking forward to hearing from you after the 29th.   

I'm sure the VA will take good care of you.  At that...   Thank you for serving!   Both of my sons are in the military (Navy & Army) so i understand and appreciate the sacrifices you and your family have made.  

You are absolutely right,  we have alot more of life to live!    

Thank you,  take care and keep in touch!!   Valerie

 

dme59's picture
dme59
Posts: 62
Joined: May 2013

I too have had the fear, anxiety as the surgery draws nearer. I am scheduled for June 5 also. I have been able to sleep but I wake up far too early. Finding this support network has already helped ease the anxiety. I have found answers to many of the questions/concerns I had flashing through my head before finding this forum. Even though all the doctors I have been too through the ct scans, biopsy, and the surgeon that is going to do my surgery keep telling me good things about my expected outcome I can't help but have some anxiety. But coming here and talking to people who either have been through all of this or getting ready to like we are has been a big help. Praying that all goes well.

Dan

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

The surgery is what tells you if you have a problem. It is not the problem itself! Welcome it like a new friend.

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

Yes, the waiting is difficult.. but.. try to think of yourself with that tumor OUT of you..!   Plus we all know the fear is much worse than the reality... hang in there...!  Find someone to hug.. 

Be Well...

Ron

icemantoo's picture
icemantoo
Posts: 3227
Joined: Jan 2010

Val,

I think all of us were scared s..tless when we were told we have cancer and at the same time told we were going to have major surgery. Not fun. You are perfectly normal to be scared. I sure was. The Nephrectomy surgery has been around for years and unless you have a heart condition is not life threatning. In your case it should be a cure with no further treatment. Mine was almost 11 years ago. Faye across the street is at 18 years since her surgery and she is a young 82.

Since you are 20 years younger than me I expect you to be here 20 years longer helping the Newbies.

June 5th the  day of your surgery was almost a very special day in our history. However because of the weather the invasion of Normandy was delayed unyil June 6th (the Longest Day). Lets hope you do not have any weather delays so that you can get rid of that little sucker on schedule.

 

Icemantoo

 

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

Ice Man, you are just sooo cool at times... You "thnk" all of us were scared, heck I was terrified..!  And that is an understament.. but I do believe that made me a much better patient afterwards..!  I joked and had FUN with the Dr's and Nurses while in the hospital.. they enjoyed me and I enjoyed them..  I felt like I got a second chance when I actually woke up after the surgery... 

I hope and bet those of you waiting on the surgery will feel the say way..!  It was such a relief getting that nasty tumor out... and here I am as you will be.. here to tell your story and smile at how you are glad to be here..!

Ron

val1963
Posts: 27
Joined: May 2013

Dan,

You (we) are in really good hands with this group!   June 5th makes us family or kindred spirits or something right? lol

this group armed me with the knowledge to free myself from the crippling grip that fear had on me.  the people here are so supportive, knowledgable, loving and full of good healthy humor.   along with coming here for support and guidence, I started a gentle beginner yoga (dvd at home no class) and it is also helping with the anxiety.

Stay positive and remember to breath.   We'll compare war stories and scars on the 6th!!   Valerie

TerriNick
Posts: 43
Joined: Mar 2013

Hang in there. Nick was diagnosed in October but then had to wait until the beginning of December for the surgery. It was a difficult time for him and the waiting was horrible. But the good news is that as we were told it had taken years for the tumour to grow to the size that it was, waiting a few weeks for the surgery would not make any difference in the size or growth of it. The surgeon was great and really put Nick at ease telling him of people that he had known who had survived 10, 15. 20+ years after having a kidney removed by him. And the surgery went brilliantly. You will be tired afterwards so expect that and allow yourself to rest as much as you need to. In the meantime can I suggest that you buy some visualisation CDs. Dr Simonton is quite a good one. Whilst they don't 'cure' cancer they can help you to start takig back some control over your wellbeing. Sometimes it is the feeling out of control of our own health and life that can make us feel worse. Doing something, anything, to take back some control can help to reduce the stress and panic. I wish you all the very best for 5 June and I have offered you the link to the Simonton Centre below. I bought some CDs for Nick from there.

www.simontoncenter.com

 

val1963
Posts: 27
Joined: May 2013

thank you so much Terri, I will check out the dvd's!    Please give my best to Nick!  

I trulyl believe knowledge is power but the right support group is the difference between paralyed or moving forward.

thank you

dhs1963's picture
dhs1963
Posts: 510
Joined: May 2012

I am guessing we are the same age, as I am assuming the 1963 refers to you birth year.  I went through what you are going throuhg a year ago.   I thouhgt the waiting is the hardest part.  Psychologically, it is brutal.  I felt paralized with fear.  I did not want to do anything, and wanted to talk about it. Cancer is scary.   Fortunately, I have a boat load of leave...Some days I just did not come in. I was so scared.  Then I woke up one morning, and it was the day before surgery.  THere were things to do (mostly in the bathroom thanks to golightly).  THe next morning, I woke up, went to the hospital, the the pre-op stuff, was giving the anesthesia, and the next thing I knew, tumor was gone (along with the kidney).  I am not going to lie and say the recovery from surgery was easy.  But you can do it.  You will do it.  You will be scared.  But we are here.

 

 

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

Loving it!  Great post!  There's lots of us here waiting tohear yourestoriesof surgery!  Take your time! We'll wait!

DonMiller's picture
DonMiller
Posts: 109
Joined: Feb 2013

I am 7 years older then you so with a bit of luck your tumor will be the size mine would have been if it were discovered in 2008.  Don't worry about the surgery!  I went in to the hospital in the morning. For three weeks I was laughing it off making jokes and acting generally like fearless big man at work.  This I think took a big toll on me  cause I was pretty  shook up.  Try to be be nice to your wife if you are married because I think it true that when you have cancer your whole family has cancer.

I got to the pre op room and the Doc gave me 10MG of valium.  They roll you into the operating room and it is cold.  Also I had to take out my contacts so I couldnt see crap. They hooked up an IV and I was surronded by all these HD vidio screens.  I looked at the clock and it was exactly noon.  Next thing I knew I was awake and looked at the clock and it was 7.30PM.  It hurt and I had some trouble breathing because of all the gas they has pumped into my body but actually felt pretty good. They kept me in the recovery room for an extra hour because by blood pressure was too high but it settled down and I was rolled into a nice room with a computer and TV and stuff.  I made my wife and  kids  go home---they looked exhusted and I wanted to be alone.  I had my phone and there were dozens of texts bascially asking if I were alive.  I answered each text with choice words I can't really repeat here.  About midnight I really started to hurt and called for the nurse.  She was nice and said the that was normal and gave me a shot and I was ok.

I didn't really sleep the second night either but about 4.30AM the gas left my body.  I will omit the details except to say I was glad it was in the middle of the night.  After that I could breath fine and spent the rest of the night walking slowly around my floor.  The next morning I had 2 cups  of coffee and was discharged.  I went home and took a shower until the water went cold.  Then I put on PJ's for the first time in 45 years and went to the big couch in my living room and watched TV and took perocets for about a week and then came back to work.

The pathology report came in about a week later and it wasn't what you would call great.  11CM   T3A  Grade 3  Vascular invasion etc.  My 4 month scan was clean and I feel fine.  I will say one thing.......there are certain thing you really dont care about too much after the surgery......things like money.

val1963
Posts: 27
Joined: May 2013

sounds like I need to work on farting and pooping jokes huh?   oh boy, even at almost 50 I squirm and get embarassed just saying (typing) those words in public!   yIKES!     thank you for sharing Don.  

val1963
Posts: 27
Joined: May 2013

Yep the big 50 this year D!   It is sohelpful to hear from people who have been through this.  I have learned much and more from this group.  thank you very much

Galrim's picture
Galrim
Posts: 305
Joined: Apr 2013

Useful or not, depends on you as a person I guess. But I had a streak of panic attacks and fear both pre and post surgery. A psychologist in my local cancer support group gave me the best advise I ever got on handling it:

"Talk to it. Adress it. 15 minutes every day. But once thats done, tell your fear that now it has gotten its allotted time for today and should bugger off. See you again tomorrow if youre still around".

Simple, but worked like a charm for me.

/G

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

I had no wait. Pain and hematuria landed me in the hospital for pain management and nephrectomy over a few day period. I might have gone nutz if I had to wait a month or so. Believe me I am impressed with everyone here who has had to deal with that. However, working in health care gives me a different perspective. I have seen thousands of people have to prepare for surgery. Even weak people get through it. So look forward to the surgery. It is the most major step in beating this disease. The rest is a lifelong challenge. The good news is that such significant progress is being made in kidney cancer care. You are becoming part of it. Concentrate on all the options that are available and make your long term plans. It is a life changing event. You'll heal from surgery. Look forward to getting that bugger out of there and  think positive thoughts.

val1963
Posts: 27
Joined: May 2013

I am grateful for your positive words Fox, thank you.   

 

 

 

'0

val1963
Posts: 27
Joined: May 2013

Brilliant!  I love it and will try it tonight Galrim!!   Thank you!

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

 

Hi Val, To reduce fears and stress over the up and coming surgery,why not concentrate your mind on a positive plan of action for a healthier you. Setting up a diet plan, exercise routines or relaxation techniques, any changes that will help you feel you are taking control of your life. The creation of a plan of action will empower you, you will gain strength from that.

There is lots of information out there regarding lifestyle changes. One thing we all have to remember to do though is drink plenty of water. There are some very good books written by Dr Batmanghelidj, who spent his life studying the damaging effects on the body of dehydration,including the effects on cell structure, it makes interesting reading. Anyway it just an idea to help you through!

All the best 

Djinnie

Texas_wedge's picture
Texas_wedge
Posts: 2799
Joined: Nov 2011

Galrim's advice gets the thumbs up from some clinical psychologists I know, in addition to his being able to vouch that it really worked for him.

Djinnie's added advice is very sensible too - both the action and the reason she gives for it. 

Djinnie, I've not heard of Dr Batmanghelidj - is there a particular title you would recommend?

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Hello Texas,

Dr Batman's main book 'Your Body's Many Cries for Water' is a good one to start with. There is also 'Water & Salt' and two others on the effects of water. I found his books interesting and felt, for me at least, his studies made a lot of sense.

 Dr Batman was from Iran and was educated at Fettes School in Scotland and later studied under Alexander Fleming. 

Djinnie

Texas_wedge's picture
Texas_wedge
Posts: 2799
Joined: Nov 2011

Thanks Djinnie. 

I've now chased down a bit more about him.  He seems to be a real maverick and despite his excellent education (I frequently drive past Fettes College when going down to Edinburgh) and studies in London with Fleming, he seems never to have published any academic research.  He seems to be regarded as a crank with a big idée fixe.  However, there's no doubting the importance of water to health and I'm sure he was right in concluding that we tend to drink less of it as we get older and to pay the attendant price.

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

I suppose it comes down to 'does the message hold water'.....lol:)

 

I have the Fettes/Fettis crest on my wall here, it belonged to my Mother, the family name is Fettis.

 

Djinnie

 

 

Texas_wedge's picture
Texas_wedge
Posts: 2799
Joined: Nov 2011

I like it! 

The family crest  - Fettes / Fettis - I hope you're not making a fetish out of it!Laughing

pinkstar's picture
pinkstar
Posts: 53
Joined: Mar 2013

Hi,

It is very normal for you to be fearful but coming from experience, it is better to keep busy. I 1st found my mass in 2010 @ 2.6cm & my surgery was 4/29/13 @ 4.7cm. At the time (2010), my Dr suggested to wait on a partial nephrectomy as the mass hadn't grown in 6 months & I was to be monitored. Shortly after, I no longer had health insurance & I didn't qualify for assistance. Fast forward to 2013 when I finally got health insurance & the mass grew yet I know was having a total radical nephrectomy due to tumor size. During the wait, I kept busy in nursing school (followed a 20 yr dream) and focused on my future. I dedicate the time to exercise and I can create a different yet delicious salad every day of the week.  I have always been known as the strong, resiliant one yet I found out how right everyone really was. LOL....waiting isn't easy but sometimes we are put into these situations to teach us things. Be patient and your time to succeed will come. It will be ok and you will be ok.

Take Care....Donna

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