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Sorry for complaining but

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

12 more days sitting here tearing my hair out whilst the monster inside me continues to grow and possibly spreadI

i have no energy either so can really do much to keep distracted although I am still working

screaming on the inside

sorry

Annie

 

Retcenturion's picture
Retcenturion
Posts: 240
Joined: Mar 2017

The wait was almost worse than the surgery. I couldn't sleep because of back injury. So of course it was Dr. Google time. Try and avoid that as many posters will tell you. I did find going back and reading as many past posts helped a lot. I also tried to prep with my wife as much as we could from recommendations people posted. We meal prepped, got some books I wanted, and set house up for post  op. It's bad but not as bad as your imagination will take you. The surgery was not fun but after first week you will bounce back. I am almost 6 months out and try and not to dwelll on the dark side of having cancer...there are many inspirational members here. Vent here...your not alone we'll listen. 

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

For your kind thoughts... I will start a plan of prep... I suppose I should  enjoy the normality for now   Post surgery I plan to be the best patient ever... if they say rest I will rest

two weeks today  it will be over and I hope on the road to recovery   surgery 21st

six months sounds great.... Do you feel normal and almost like the way you were pre surgery

Annie

 

 

medic1971's picture
medic1971
Posts: 205
Joined: Sep 2015

Hello Annie, sorry we had to meet like this but I am glad you found us.  I think we might be able to help easy your fear just little.

 

I know you are worried about this sucker spreading, but try to keep this in mind.  There is a very good chance you've had this for several years.  I think the average growth rate for most kidney tumors is like 3 or 4 mm per year. So with that said there is very and I mean very little chance it will spread between now and surgery.  I waited 4 months between finding my tumors and surgery and there was not even one millimeter of growth between my first CT scan and the one right before surgery.  

You will feel better once you get that little sucker out of there.  Surgery wasn't horrible, but it wasn't a walk in the park.  I post-op pain wasn't bad.  Getting in and out of bed sucked, but once I was up there were no problems.  You will be up and walking within a couple of hours after getting to your room.  You won't get much rest in the hospital, in fact my worst day was on post-op day 2, the day I got out of the hospital.  I felt like dog poop, but after I got to the hotel ate a bite of food and got to bed I felt much. 

Post-op pain is not too bad, I was on pain meds around the clock for the first 3 or 4 days and then only at night after that for about a week.

I was in the hospital 2 nights, then in a hotel for 4 nights, and then flew home by myself on post-op day 7.  I could have returned to work in 3 or maybe 4 weeks later, but I took the whole 6 weeks off.  I had the sick time built up so I took it.  

Have you talked to your doctor about getting on something to help with the anxiety?  I was Xanax during the four months I waited for surgery.  

When you have time watch this video.  The is a presentation from a urologist at MD Anderson about the Evaluation and Management of Localized Renal Cell Carcinoma or mass in your case.  No will know for sure what you have until they get it under a microscope.  It was a video just like this one and helped me a great deal.

https://www.youtube.com/watch?v=493RFA_tA1I

Please post any and all questions you have and try and hang in there.  You will get through this.  

 

Jason

 

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

then you got on a plane... well   That might just stop me complaining

  I am lucky I live close to a very good teaching hospital with great surgeons so I don't have that issue

 

yes  I watched that video and it was very reassuring... except for the 20% aggressive  issue

the bad thing is I feel like a cancer patient with some recent weight loss .. pain and constant fatigue

i am ready for the pain (famous last words)  hoping that once over and I have the results I will be able to focus a bit better   {ditto}

i am seeing my GP on Tues so will ask for something

did you get  an bone scan

So happy that you are doing well

 

thank you  so much for the time and thoughts and kindness... it means more then you will ever know.

 

Annie

 

medic1971's picture
medic1971
Posts: 205
Joined: Sep 2015

I asked my doctor at MD Anderson about a bone scan and he said that as long as my Alkaline phosphatase (ALP, ALKP, ALPase, Alk Phos) was normal there was no reason to do a bone scan.  So far mine have all been normal.  

Usually that "20% aggressive" is seen with larger tumors ones greater than like 7 or 8 cm.  

How was your tumor found?  

For me I was having upper right abdominal pain that went into by right flank area.  Turns out that my pain had nothing to do with the tumors on my right kidney.  In fact, I still have that pain two years later.  That pain turned out to be IBS.  That pain may have saved my life.

Optimisticgirl's picture
Optimisticgirl
Posts: 82
Joined: Aug 2017

I am a horrible worrier. When husband was diagnosed my mind went crazy with all the bad things that could happen.  I kept it to myself, not wanting to let everyone know how worried I was. One thing I did was make lists of everything we would need before the surgery to make life comfortable after he came home. I received many helpful ideas from this group. With all that taken care of I made a list of everything we want to do with the rest of our lives. I think this gave some feeling of control over our life, since one thing cancer does is throws life into a turmoil.  My husband came home the day after surgery (thursday) radical laparascopic nephrectomy, and today he takes mostly just Tylenol for pain with a stonger pill at night for better sleep.  He tires easily but otherwise doing as ok as can be expected. Do something that can help take your mind off the situation totally. We watched alot of comedies also to keep spirits up. You will be fine. Contact me anytime if you need someone to chat with....most of us definitely understand your anxiety and would love to help you in anyway. 

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

And great to hear he is home  and doing well 

that must be a big relief

 

THANK YOU AND WILL BE IN TOUCH

the bad is there but I am trying not to go there

Deanie0916
Posts: 439
Joined: Nov 2016

and comfort by reading the posts and getting advice from many good folks here. The waiting is the hardest part, for sure. It will get better...

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

apologize for dramatics but my fear is led. By lost of my husband to lung cancer

its tough as I have two children

the posts are great.  So glad I found you all

BoondockSaint's picture
BoondockSaint
Posts: 242
Joined: Mar 2017

And we're glad you found us too. To be honest.......I wish like hell that none of us knew each other. That would mean that nobody here would be dealing with this dreadful disease.

But......that's not the case and since we are here, I plan to stand and fight in any capacity I can even if it's just here on this message board.

donna_lee's picture
donna_lee
Posts: 1020
Joined: Feb 2009

I didn't have time to "worry" at my initial DX, since I was given only 5-7 months to live in the event surgery could not be done.  Well, the specialists (plural) felt they could operate, but that still geve me an enourmous list of things to get accomplished prior to surgery.

Prep the house, wash all the bedding, clean out closets, get rid of clothes that don't fit, and most of all, get all your legal documents in order, etc., etc.  Keep your body, hands, and mind busy.

The cancer will not grow appreciably while you wait.  Even though the bipsy measurements may be different from the estimate on CT's/ultrasounds, etc.

Hugs and best wishes.

donna_lee

 

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

I know I am so sorry for  all the fuss

 

i am praying and hoping

thank you.  Have loads to do but not much energy. 

lauras
Posts: 2
Joined: Sep 2017

I so understand! I had N 8X8 TUMOR AND WAS BLOWN OFF BY MY DOCROS, TOLD MEW IT WAS  NOTHING TO WORRY ABOUT, I PUSHED AND FINALLY AFTER 2 MONTHS GOT A CT SCAN THEN HAD TO WAIT A MONTH TO HAVE SURGERY, IM 2 WEEKS POST OP. IM SO SORRY AND UNDERSTAND EXACTLY HOW YOU FEEL

Supersum's picture
Supersum
Posts: 109
Joined: Aug 2017

That is really terrible to be brushed off when you have a serious illness I hope you are starting to recover now.

When did you find out the tumor was "8x8"? Was it after the CT scan, or after the biopsy following removal? If it was after the CT scan, how big was the tumor after removal as recorded in the biopsy?

 

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