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Coping

Jess888's picture
Jess888
Posts: 1
Joined: Apr 2016

Hi all! Just joined this forum. I had an RCC removed in July 2014 At the age of 26. To say it shocked me would be an understatement. I've found that the yearly checkups just about kill me as far as the anxiety, the waiting, the wondering if it has done back, etc. I feel like I have PTSD from it. Have any of you suffered with these feelings post cancer? im looking to build a support group to help my fears. Most people don't understand the emotions with cancer unless they have gone through it. Any feedback with tips to cope would be fantastic. God bless you all! 

-Jess 

icemantoo's picture
icemantoo
Posts: 3334
Joined: Jan 2010

Jess,

First welcome to the club that no one in their right mind would volunteer to join. A little bit of a schock to be told you have Kidney Cancer and the first thing they want to do is yank out your kidney. It takes a while to adjust to the new reality. Hopefully you have a good prognosis and can lead a ful and productive life. In was nephed almost 14 years agoat what I thought was a young 59 years young. Others will chome in to share their experiences. I was thinking that we should have a rule not allowing anyone to get Kidney cancer so young or for that matter, ever.

 

Icemantoo

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

Welcome, Jess (that's my daughter's  name!!)

I totally understand your feelings. My husband had kidney cancer at the age of 47. The abrupt circumstances under which it was diagnosed did trigger terrible anxiety and symptoms similar to PTSD for me. Especially since our young daughter witnessed the "situation" as it occured. 

Long story short, I found a therapist that I could related to and it was amazing. I still go to her 2.5 years later. When he has to have scans, I freak out again (I'll be posting about that later, lol). 

It will be worth it if you find a therapist you relate to. Don't be afraid to switch around if you have to. I highly recommend. And, for what it's worth, there are is amazing support to be found here on this board. 

 

beaner1219
Posts: 2
Joined: Apr 2016

I was diagnosed in July 2014.  God took care of me and I only lost a part of my right kidney.  I,m now back as good as anyone my age can be.  But those six month test are nerve racking.  It seems like I'm starting to like the taste of barium.

Hang in there, know that people are praying for you and God listens, I know He did in my case.

foroughsh's picture
foroughsh
Posts: 779
Joined: Oct 2014

Jess

Welcome to the board no one dreams to join specially at your age. I was diagnosed in Aug 2014 at the age of 36.

All I remember from first three months is crying, crying and crying  then I had my first series of scans and after I received the NED report I could smile for the first time in three months, it was literally the most difficult experience I could ever imagine. Then I got better little by little and talked to a very good therapist who helped me face this reality. I got better  but still freaked out for my second CT scan almost nine months post surgery,  now and after 20 months from the diagnosis day I feel better during days and at nights( it was terrible waking up at nights and thinking about many whatifs) but I got freaked out the last time I had to have brain CT regarding continues headache and tingling feet and hand. I was terrified and acted like a baby, I kept telling myself this headache could have other cause and has nothing to do with RCC but it was like screaming underwater, I couldn't even hear it. So I want to have more and regular talk with my therapist. It's not odd to feel like freaked out when it's CT time but we can help ourselves get less annoyed.

Forough

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

I could have written what you did so yes, I definitely understand the anxiety of waiting for checkups, test results, worry about recurrences, etc. It’s like a cloud hovering over you that clears for a while and you’re all happy and relaxed and then it returns. I try to be positive but that’s easier said than done. I find that a small dose (.25 mg) Xanax helps take the edge off. I too find waking up at night the worst because the mind movies start.

I too have compared it to PTSD. In fact, I experience terrible anxiety every time I go to the bathroom at the airport because that’s where I first peed blood which lead to my diagnosis. So now every time I travel (2 years later) I still get rapid heartbeat and anxiety when I have to use the bathroom. And I totally get the “you have to have experienced it in order to fully understand the mindset” thing. I believe that too.

Wishing you the best and we're always here to talk to.

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

for 5 years, in 2011 I had my left kidney removed, and within 30 days I was back to normal and never gave it a 2nd thought till this year when it recurred in my right lung, now that its been removed from my lung Im hoping to return to that state of denial and get on with normal living again, although I dont feel as invincible as I once did. I actually thought it would never come back on me as the years went on, being in denial again I guess. My Dad had kidney cancer at the age off 55 had his left kidney removed and lived to be 87 without it ever coming back on him, so it doesnt come back on everyone, I think thats important to know. As far as the yearly scans I never dwelled on them, its just part of life for anyone who had rcc, and there is no point in worrying about them, you may always get good results, like my Dad did. As far as stress Xanax and medical pot edibles work miracles for me when I get to feeling down,JMO.

Good luck

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

Just chiming in to let you know that what you're feeling is pretty common.  My surgery was in 2012, and I still feel like I have PTSD!!  I try to make light of things and say I do some of my best thinking in the middle of the night, but truth be told, I'd rather be sleeping.  I'm a fan of Xanax as well. I have the lowest dose (0.25mg) & when I do take it I only take half a pill. It definitely helps quiet the chatter in my head so I can go back to sleep. And I like the fact that it doesn't give you that hangover fuzzy feeling like benadryl does.

I'll add you to my daily prayers, as I pray for everyone on this forum. 

Best wishes,

Donna~

cheatinlil's picture
cheatinlil
Posts: 202
Joined: Jun 2014

Jess888 welcome to the group.  I'm sorry you are here though.  Yes, I too am suffering from PTSD.  It can be rough but this is a great place to come for encouragement. 

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

Hi Jess,

Yes. I can relate to that. I was on a business trip when I was diagnosed. I was in another city by myself staying in a hotel. A year after that, I was working in Italy (alone) and got very sick (I was on a drug study) and ended up in an Italian ER where nobody spoke English. I had to have a CT of my brain (I was having numbness in my right arm/hand). Being in Italy and not sure if I should stay or go home (would they let me on the plane being so sick?), was really frightening. I went to the pharmacy and couldn't read the drug labels. Funny thing. In Italy many drugs we have over the counter are prescription there, and vise versa. And NOTHING has the same name. In the pharmacy you stand in front of everyone waiting in line and talk to the pharamacist about what you are looking for (even the OTC medicines are not on the shelves, you have to ask for them). It was a horrible experience.

Then a year ago I was about to leave for another trip to Italy for work, and I got a pain in my side. I went to the local ER at my cancer center and they did a CT scan and found a met in my right adrenal gland.

Now everytime I travel out of town, I get an anxiety attack.

In addition, every time I get any odd physical symptom, I have a panic attack. Ringing in the ears? That was this past few months. Swelling in my hands (off and on since my kidney was removed). Vertigo (off and on since my kidney was removed). Etc. Any odd physical symptom, makes me crazy. Congestion in my chest? Used to be it was a chest cold. Now it's a lung met. Never mind I had a CT scan a month ago! Lol.

Ringing in my ears? That had to be a brain met. It's largely gone now.

Yes. Having cancer is stressful. Very much so.

I hope you are cancer free and remain so. I hope as time passes, you will be able to let it go. I'm doing some better now.

Best wishes,

Todd

mrou50
Posts: 389
Joined: Mar 2013

You are experiencing the same emotions, and fears we all did and still do.  As for me it does not get better but you learn to live with it as a new normal.  No one is really prepared to hear that word cancer in my opinion, and there is no cut and dry method of dealing with the emotions either, just remember it is okay to vent, and worry, and scream, and get down right angry, but don't give up on your life, keep living and appreciate everyday as a gift.  You have joined a good group here that is supportive and we have all been where you are and where you will be so don't be afraid to lean on us.

 

Mark

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