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3 weeks post radical nephrectomy-feeling emotional

Kidneycancer@35
Posts: 14
Joined: Aug 2013

Hi everyone,

I've read many posts on people's physical journeys from discovering cancer and the resulting rush for major surgery. I am now 3 weeks post radical nephrectomy for a 4cm chrcc. The pain had eased up and I'm getting out and about, although I still tire easily. I have been really positive and dealt with each hurdle well. I didn't even cry when I found out it was cancer. I guess I just focussed on what needed to be done.

However, the last few days I have felt extremely irritable and emotional. I have had bouts of crying and started a fight with my partner. Has anyone else experienced these emotions?  Do they last? Three of my incisions have split open and I was devastated yesterday (definite overreaction). I guess I just want to know if what I'm experiencing is normal.

 

Lorna

 

 

 

Gordon Charles's picture
Gordon Charles
Posts: 91
Joined: Jun 2012

Didn't want you to think nobody was listening.  Folks far more informed than I will be here shortly but until then I have a few questions.  Why the radical on a 4cm tumor.  Are your closure mechanisms (sutures, staples, etc) still in place or removed?  As far as the emotions, that can be a real roller coaster for awhile.  Surgery, medications and an uncertain future do not make for a relaxing situation.  What did the pathology report say?  Are you seeing an oncologist?  I'm willing to guess that just posting your thoughts may have helped ease a bit of the gloom.  I know I had some rocky times until I came to grips with my new reality.  Hang in there..... more thoughtful people will be here soon.....

Kidneycancer@35
Posts: 14
Joined: Aug 2013

Hi Gordon

 

Thank you for sharing and your supportive words. Sorry, I didn't make myself clear. I had the radical after a biopsy revealed the tumour in my left kidney was chromophobe rcc. The tumour was too close to the vein for the surgeon to attempt a partial. I get my full pathology report next week and will know my next steps from then. I highly doubt there will be an oncologist referral though.

The surgeon did a laproscopic nephrectomy and three of my 5 incisions have split open. The surgeon used glue to seal the wounds and unfortunately it has come off most of them too soon.

I guess I am just coming to terms with my new reality.

 

 

 

TillieSOK's picture
TillieSOK
Posts: 246
Joined: Jul 2013

My incisions were glued also, and came apart.  I just kept them very clean and covered.  I loosely taped the larger incision back together, and they finally grew together, although I look like I have 2 belly buttons now.  As for the emotional roller coaster, yes, that will happen, too.  Your body has gone through one heck of a battle and survived being cut open, stomped on by 47 sumo wrestlers, and then put back together with bubble gum and super glue.  I'm about 14 weeks out from surgery and I'm still sore in places, numb in places, and pissed off as hell that this has happened just when my husband and and I were all set to start enjoying our "golden years". Hah! Right! Just take it one day at a time, and your partner probably could use a hug and an "I'll try not to pick another fight, but I can't guarantee anything" followed by a big smile and a kiss.  That usually works with my guy. ;0). Hang in there. 

Kidneycancer@35
Posts: 14
Joined: Aug 2013

Thanks for your reply,  Tillie.  This journey is definitely a roller coaster. Thankfully I feel less emotional and more like my self than I did this morning. I have heard of a few people's wounds coming apart that have been glued. I wonder why they use it! One on my back is infected and I keeo having to get it dressed at the drs. I guess I just feel frustrated that it's not all progressing as fast as I'd hoped.  I, too, have numbness. It is a large area from.juat below my incision half my groin and the top inner part of my thigh. It actually seems to be easing which I didn't expect. I had an emergency c section a few years ago and half of that scar and surrounding area. I guess we are all getting used to our "new" bodies in a way.

 

 

 

 

foxhd's picture
foxhd
Posts: 2213
Joined: Oct 2011

Lorna, you must be a tough woman. You were faced with a difficult situation. You stood tall and took your medicine, literally. Congrats. However, there is a substantial reality strike for most after several weeks post op. You are dealing with your own mortality. It does pass. Many get meds to deal with it. I suggest you take this time to rethink your future. Take time for yourself. Be patient with your recovery. Time varies. Smile. There isn't much that can be harder than what you just did. It is now part of who you are. Like it or not. You were signaling right but forced to turn left. This board has all been through the same thing. Hang around and recieve some assurances about it. It will help. Fox.

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

Unfortunately!  The emotional roller coaster is tough!  Truly!  That said, the worst is likely over. My own radical for a 4.5 cm was May 14, and sometimes I still get a little anxious/depressed over it all.  That's a part of life.  

Focus on taking it easy and healing!  That is the prime directive right now.  Fox has offered some words of wisdom I can get behind!  Stay on top of your follow ups, ask lots of questions, visit here often, and talk about it! Texas Wedge has a saying that originated from a friend of his that I use as a guide:  "Accept the changes and keep moving forward!" 

It's good advice!  The direction is forward. What is past is past.

Michael

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

Hi Lorna, I'm 11 weeks post radical neph, right side.  My tumor was 4.7 cm but it's location left no option for a partial.  The largest of my three incisions was about 6 inches, in the shape of a question mark around my belly button.  It was stapled, so no chance it was coming open.  The other two tiny incisions were glued and covered with steri-strips, one of which, came open.  I just lightly covered it with sterile gauze and it healed just fine.  Unlike you, I bawled like a baby when I, quite incidentally, learned I had kidney cancer.  My story, in regards to diagnosis, is a bit different than most.  I live in Oklahoma and have for 35 years.  For the past year and 9 moths my job has me working in Ohio.  My typical schedule is Ohio 8 weeks and home with hubby 1 week, flying back and forth.  While in Ohio, on May 1st of this year, I got sick with a stomach flu.  On the 4th day of being sick, I went to the ER.  The ER doc admitted me for dehydration and ordered a ct scan to rule out pancreatitis.  Sure enough, pancreatitis was ruled out and the Dr agreed my self diagnosis was correct, I had a nasty stomach flu.  The following day during the discharge instructions, the attending doctor, a DO, said "by the way, did anybody mention to you that you have a tiny spot on your right kidney?"  I told him this was the first I'd heard of it and he went on to say, "well it's not that worrisom but you might just want to watch it, maybe have it looked at when you get back home, these things are usually harmless".  That was wonderful!  He wasn't the least bit concerned, there was no sense of urgency in his voice, it was no big deal.  I forgot about it.  Didn't think another thing about it.  The following week, while preparing to return to OKC for my routine visit home to see my husband, I decided I should probably get my medical records from the hospital and take them to my family doctor...just because.  I picked them up on a Monday after work, took them back to my apartment, put them on the counter in the kitchen and began packing.  Later that evening, right before crawling into bed I remembered that I hadn't even looked at my records, so I grabbed them off the counter and sat down on the couch.  The first words that popped off the page were Renal Cell Carcinoma.  I could not believe my eyes.  I checked and double checked the name at the top of each page of the records to be sure they were indeed mine.  Needless to say, sleep did not come to me that night but tears did...and they wouldn't stop.  I had never felt more scared and alone, in my life. I fired up my laptop and my journey began.  That was Monday, May 6th.  Surgery was Wednesday, May 29th.  Pathology revealed Stage 1, Grade 2 Clear Cell RCC.  My emotions have been all over the place, ranging from anger to fear and everything in between.  Right now, I'm in a good place, emotionally speaking.  I have a new lease on life, I'm closer to God than ever before and I have better clarity of what really matters.  I have learned not to sweat the small stuff, not to take the people I love for granted and to always be mindful of the fact that tomorrow is not promissed.  My point is, it took me going thru all these many emotional days and ranges of emotions to come to terms with, not who I was before cancer, but who I have become since cancer and because of cancer.  So, although the emotional rollercoaster you are riding is no doubt, pure hell for you and maybe even those around you, in the end, if you're like me and so many other's I've talked to, it will have been worth the ride to come out on the other side, a better 'you'. 

Your emotions will stabilize as you get stronger physically and are able to resume all of your normal activities.  The more physical you become, the less time you sit around thinking.  Too much 'thinking' just about got the better of me.  Having said that, I am certain the emotions will grab hold of us each time we go for blood work or chest x-rays, ct scans, etc., for the next five years.  But, I know you've heard the saying 'what doesn't kill us, makes us stronger'...it's true, so, hopefully as we anticipate each doctor appointment, we'll do so with a new found strength.

The camaraderie I have found on this forum has been such a blessing.  I don't chime in often but I read everything, or at least try to, and I've learned so much from so many.  In a sick kinda way, it's nice to know I'm not alone...and neither are you.  Hang in there, it does get better!

Sindy

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

sindy i couldn't have said it better myself..... ;-)

eims x

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

Thank you, Eims!!

sbaron
Posts: 6
Joined: Aug 2013

Hi,

Three years ago, I had a 9cm malignant tumor removed laproscopically.  My incisions were red and ugly. The surgeon sewed the wounds with disolvable stitches.  Two of the wounds opened up and in one the stitches did not disolve. Your body will heal; and, believe it or not, you will barely be able to see the incisions. 

EVERYTHING at this point in your journey is a worry, it's normal.  My advice is to do what is recommended regarding diet changes and follow-up tests. After my diagnosis, I worried, was a bit angry (why me? kind of thing), and felt like "what should I be spending my time doing?"  I did not truly stop worrying until my third MRI came back clean.  I really don't think about my cancer now, and I'm much healthier mentally.  I know you'll be the same way.  I do think talking walks, yoga, and laughter are helpful.  Surround yourself with fun, happy people.  Be sure to get out of the house and do something to take your mind off your condition.  A suggestion would be to take a class in something interesting: photography, drawing, writing, dancing, etc.  

I will pray for you, but I know time will help heal your worries.

Best,

Sophie

icemantoo's picture
icemantoo
Posts: 1837
Joined: Jan 2010

Lorna,

 

Every thing you are going thru emotionally is similar to what we all went thru. Each day further out should be a little better. As far as problems with the incision, those are very individual and followed up with the surgeon.  A few years down the road you will be able to look back and laugh at all this.

 

 

Icemantoo

Gordon Charles's picture
Gordon Charles
Posts: 91
Joined: Jun 2012

SEE.... I told you the troops would show up.  Your journey may be individual but it doesn't have to be lonely..........

 

Kidneycancer@35
Posts: 14
Joined: Aug 2013

Thank you so much for sharing and I don't feel like a loony right now. It is so nice to know what I'm experiencing is normal. I actually feel loads better and stronger today but I'm aware now that this is a roller coaster so at least I'll be prepared when I start feeling angry and emotional again. I guess I hadn't really had any emotions since starting this journey. I just got on with it and everything caught up with me and hit me with a sledgehammer the past few days. I'm a bit anxious about my pathology report which I get next Wednesday. I'm hoping for the all clear and to be able to start work in a few weeks and get back to my new normal.

Thank you all for your advice and sharing. It truly is helpful and I am so glad I joined this forum. It is always better to know you aren't alone.

 

Lorna

 

 

TillieSOK's picture
TillieSOK
Posts: 246
Joined: Jul 2013

I had an "anger management" problem today and thought seriously about locking myself in the bedroom and telling my husband to go fly a kite....well, not that nicely, but I can't type what I would have told him to do.   My blood pressure was through the roof and he thought it was okay to not tell me that he had taken care of something that I was worried about...just let me go ahead and worry and stew until my BP and pulse were making me dizzy!  I have an appt tomorrow with my family doctor and I'm going to discuss with him that I want a referral back to Dr. Hart or someone familiar with RCC, since my surgeon (who is supposed to be a urological oncology surgeon) doesn't seem to want to keep me in the loop about my body.  Yes, I'm on the downhill screaming run from the top of that roller coaster track right now.  I've been having bad back pains, left thigh pain, and pains in my upper middle abdomen for a couple of days now, along with a bad headache and neck pain.  I "know" it is probably nothing, but guess I'm having one of those paranoid episodes and think every ache and pain is cancer.  But, you know, I told my friend back last year that I was afraid to have another MRI done, because I had a feeling they would find cancer somewhere, and I really didn't want to know about it.  I had three good friends die within months of being diagnosed, and then my sister died last Sept....then voila'...here I am, and I don't want to be where I am! I know I am luckier than a lot of people on here, but my mind isn't understanding that right now.  I'll be better tomorrow, and my husband may still be alive if he doesn't pull anymore shenanigans with my blood pressure! LOL

Kidneycancer@35
Posts: 14
Joined: Aug 2013

Hi Tillie

 

I'm so sorry you are having a bad day but you sound exactly how I've been with the same anxiety and worry and irritability. At least we both know it passes although now I know I'm still onnthe roller coaster but at least I'll be prepared next time.

I've realised since joining the forum there are a bunch of us all on the same ride and we know what we are all going through.  I hope you are feeling yourself soon.

xx

 

 

 

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

I have been right where you are, Tillie.  I get it.  The mister has feared for his life on more than one occasion during our journey.  I say 'our' because he's ALMOST as affected by my RCC as I am.  During a recent visit to my family doctor, I had a melt down, right there in his office.  During the dr's assessment of my emotional state, he asked me if I had any suicidal thoughts.  Really??  I looked him straight in the eye and said suicidal, no...homicidal, yes!!  I, of course, was not serious, nor did he think I was, but it did serve as a good indication of just how irritable I was.  Luckily, my mister survived that particular coaster ride.  If I could just manage to get on the coaster alone and not drag him on too, but, inevitably, he says or does something stupid that lands him in the seat along side me. 

Like you, I have had several people die soon after their cancer diagnosis.  My dad was diagnosed with colon cancer in December 2002 and died in January 2003, just 5 weeks, at 66 years of age.  Mama was diagnosed the day before daddy's funeral, in Jan 2003 and died in October 2003, just 9 months, at 64 years old.  Hers was undetermined as to the primary source, but we knew for certain it was in her lungs, and brain.  And then there was my co-worker, diagnosed in the fall with pancreatic cancer, died the following spring, she was 42 years old.  So, when you talk about fearing the worst with every ache and pain, I completely understand.  I am guilty of the same.  Right now I'm good, when I go back in December for blood work and chest x-rays, that will change. 

As for all the aches and pains you are currently experiencing in your back, thighs and tummy, they could certainly be anxiety induced.  I know first hand how powerful the brain can be.  All it takes is just the very thought that that little pain is something ominous and away run our minds in the direction of 'what if'.  Then, it's just a matter of time before anxiety sets in, exacerbating the pain which in turn, makes our minds run even faster and before you know it you're back on the coaster, screaming on a downward spiral.  Having said that, I know it's important to have the aches and pains evaluated by a doctor but, if we could somehow put the whole anxiety meltdown on hold until we KNOW there's a problem, we'd spend more time in line anticipating the coaster ride without actually getting on the coaster full speed ahead.

My doctor isn't the best communicator either so I am going to get my pathology report and read through it.  I was under the impression (because it's what I was told) that my adrenal gland was to be removed with my kidney, along with lymph nodes.  At my 2nd follow up, the nurse said my adrenal gland was still in tact.  What?  Really?  Is that good?  Did he take lymph nodes?  She did mention I still had blood in my urine but said if the doctor didn't mention it then he must not be too concerned about it so, nor should I be.  I had blood drawn at that visit but never heard about the results.  When I called the office to inquire about it, the nurse told me the results were on his desk and that no news is good news.  If I didn't hear back from him in a day or two, that means everything is within normal limits.  I've read enough posts on here to know that most people know the level at which their, now lone kidney, is funtioning.  I have no idea what my kidney function is.  I am learning I need to be my own advocate, that my kidney cancer is clearly far more important to me than these doctors and nurses and if it takes me being a ***** to get answers, then so be it.  I can do that...just ask the mister Yell

Whew!  I guess I needed to vent, sorry to unload on ya!  Hope you are in a much better place today, Tillie.  Keep your chin up!

Sindy

TillieSOK's picture
TillieSOK
Posts: 246
Joined: Jul 2013

 

I'm sitting at my doctor's office right now...in the exam room, as a matter of fact.  I'm calmer today and will talk to him about transferring my onc care to another dr.  I will still be coming to this one because he is my primary care dr, but I don't want to see my surgeon anymore and he doesn't seem to want to release me. Aghhhhh!  One good thing about the stress...I'm averaging 1 lb a week weight loss.  Yay, me!  Plus I don't feel too many murderous impulses so far today, and that's good, right? Wink

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

I could go for a lb a week myself, (30 weeks worth infact) but there must be an easier way!  That's coming from a fat girl who's tried every diet known.   A fat girl who knows how hard it is to lose weight and STILL I say, there must be an easier way.  Stress is a wicked thing. 

I hope your appointment was productive today.  At the very least, I hope you got the name of a new doctor. 

And yes, it's a good thing you're not contemplating murder today...hubby lives to see another day.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

I'm very (and, I fear, unusually) lucky in having a just about perfect care team who are infinitely obliging, caring and willing to discuss everything in detail. 

Nonetheless, I applaud your healthy, robust attitude, which most of us need to constantly bear in mind and you put it very well:

"I am learning I need to be my own advocate, that my kidney cancer is clearly far more important to me than these doctors and nurses and if it takes me being a ***** to get answers, then so be it.  I can do that."

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

Thank you, Texas!  It's amazing to me how an experience such as ours actually makes us stronger!  So I traded a kidney for courage and strength, big deal!!

And yes, I'd say you're very lucky indeed.  I have every faith in my doctor's abilities, I did my homework reading his credentials, very impressive I might add.  And, I can see why people travel near and far to see him, given his years of experience and groundbreaking procedures.  And honestly, he couldn't be nicer.  But he's quite elderly and it seems, forgetful.  So, I will just need to be dilligent in making sure they stay on top of things and don't allow myself to fall thru the cracks, so to speak.

 

TillieSOK's picture
TillieSOK
Posts: 246
Joined: Jul 2013

My family physician agreed with me about seeing an oncologist rather than the surgeon (he doesn't seem to want to release me). So I will be making an appointment with Dr. Lowell Hart, at Florida Cancer Specialists, to follow my cancer and Dr. Meir Daller, Urologist, to take care of and keep track of my remaining kidney's function!  My BP meds were changed today and I'm comfortable with that decision. I feel like a weight has been lifted from my shoulders...

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

That's wonderful news, Tillie!!  So happy for you and your new found peace of mind!  It's so important to have a good relationship with those overseeing your care.  Trust and faith in a doctor and his staff are priceless because it really does effect our overall well being.  So, I will pray that you find that with your new doctors and that you get the best possible care.  Keep us posted Laughing

TillieSOK's picture
TillieSOK
Posts: 246
Joined: Jul 2013

Sindy, do you live in OKC proper or one of the outlying towns?  I used to live in and around OKC and worked for almost 8 yrs at Presby Hospital.  Both of my kids graduated from Harrah High School and OU.  My daughter lives in Norman and is a RPT.  Son is a Lt Col in the AF, stationed in San Antonio.

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

I actually live in Mustang, about 1 mile west of OKC city limits.  My children, twins, now 28 years old, went K-12 grade in Mustang.  My son is also in the AF, a flight engineer, AWACS, stationed at Tinker.  How blessed are we to have our son so close to home?!  He's been in for 10 years and has been TDY plenty but, for the most part, he's at home.  Germany may be in his future but I 'm going to stay in denial as long as possible.  My daughter is a Petroleum Landman and is actually my Crew Chief.  I work in Ohio, have an apartment in West Virginia, just a few miles south of Ohio state line.  I'm up here 8 weeks (or so) and back in OKC for 1 week (or so).  But Oklahoma is where my heart is. It's where my husband and I have spent our entire 31 year marriage.  In fact, we just built a new home before I got transferred.  My current living situation has certainly made my journey with RCC even more difficult but, I'm managing, by the grace of God.  How long since you left the area, Tillie?  

TillieSOK's picture
TillieSOK
Posts: 246
Joined: Jul 2013

I left about 21 yrs ago, but my remaining sister, my brother, my daughter and various nieces, nephews, and 2 grandsons still live in OK.  It was where I was raised...NE corner of OK...and I still call it home.  There's something about being an Okie.  Both of my kids were born there...my son at Tinker.  

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

I knew there was something about you I liked, Tillie...You've got okie in your blood!! Wink

a.oakley
Posts: 32
Joined: Oct 2012

I think what you are going through is quite normal.  You put all your focus and energy into what needed to be done.  You took care of business.  Now as you are recovering, you've had some time to think and the emotional part comes out.  You will get through this part too.  Go easy on yourself.  You've been through a lot.  It does get better...your thoughts and your physical well-being.  I wish you a speedy recovery and good news at your next appointment.

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

Lorna, don't be so hard on yourself. I am a little over 3 months post op, of having a hand assisted laparoscopic radical nephrectomy. My tumor was confined to the left kidney and was stage 1 and scale 2 (also nearly same size). I too have very emotional days and from my understanding, many people have had to take medications to help with depression. I am not taking any medications other than my metformin (diabetic type 2) and now cozaar (for high blood pressure). The cozaar is to help with my 1 kidney not spill out so much protein. The last few urinalysis tests have shown some protein but nothing to worry about (70/+1). I am grateful that my incisions have healed nicely but I definitely have my moments of saddness. I have been blessed with a wonderful support of family and friends but at times I just need to watch some bad tv for a laugh. LOL take care of yourself and never feel bad for allowing yourself to feel. 

 

Best of luck,

Donna

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