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Sorry for complaining but

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

 

Comments

  • Retcenturion
    Retcenturion Member Posts: 240
    It seems normal

    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
    Wehavenotimeatall Member Posts: 488

    It seems normal

    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. 

    Thank you Sir

    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
    medic1971 Member Posts: 205
    More than likely...

    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
    Wehavenotimeatall Member Posts: 488
    Three months. And

    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
    medic1971 Member Posts: 205
    Bone scan

    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
    Optimisticgirl Member Posts: 82
    Hi Annie

    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
    Wehavenotimeatall Member Posts: 488
    Thank you

    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
    Deanie0916 Member Posts: 432
    Hope you are getting some peace

    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
    Wehavenotimeatall Member Posts: 488
    edited September 2017 #10
    I do thank you

    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
    BoondockSaint Member Posts: 242
    And we're glad you found us

    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
    donna_lee Member Posts: 1,018
    Don't freak out if there's nothing you can constructively do!!

    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

     

  • Oh dear

    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
    lauras Member Posts: 2
    I so understand! I had N 8X8

    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
    Supersum Member Posts: 109
    lauras said:

    I so understand! I had N 8X8

    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

    That is really terrible to be

    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?