Memorial Sloan Kettering Cancer Center - My Experience

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Comments

  • debugy2k
    debugy2k Member Posts: 85 Member
    Helen321 said:

    I had a terrible experience

    I had a terrible experience at Memorial Sloan Kettering.  I was just a number, was over treated, was treated so badly after my surgery that I'm still angry about it 5 years later.  I reacted badly to the anesthesia from surgery.  They labeled me with a nickname, and when I was crying told me that surgery hurts and to stop crying.  I slept for a whole night without a sheet on my bed as revenge?  I don't even know why I had no sheet on my bed but I was in no shape to deal with it and they sent my family home.  My daughter wanted to stay and they insisted she leave so I woke up at 4 in the morning with a permanent ostomy at 42 alone and hysterical.   I would never not recommend the place because there aren't many choices but I'm not going to sing their praises either.  If you don't pay attention, you won't survive.  You have to be your own advocate and you have to know what you're talking about.  My mistake was not understanding my own body.  I just didn't have the knowledge that I have now and I paid a dear price for it.  It was so bad that when I went in for a temporary ostomy, the came out and told my sister that they could either wake me up or take the anus.  Who does that?  My sister said the way it was presented to her was, we've already got her under and a whole room full of people working.  Okay but this is my anus!!!!!!!!!!!  So my sister made a choice for me under pressure that I NEVER would have said yes to.  I made her my proxy in case I was dying, not so she could alter my body without my permission.  So now I'm stuck with a deformed body so that "a room full of people and hey she's under anyway" didn't cause anyone else disturbance.  I'm glad you had a good experience at that hospital, but not everyone does.  I think they are overrated.  Again, would I say don't go there.  No.  If you have stage IV cancer, it's better to go to a cancer hospital than a regular hospital with a cancer ward. You stand more of a chance at Memorial than LIJ.  Would I say don't go to another Cancer hospital in another state, No.  Just make sure it's a cancer hospital.  Never choose a regular hospital over a group of specialists in the field.  They're since changed their surgery rules about removing body parts without patient consent because of my complaint.  A family member can no longer authorize major surgery if the patient is able to do so by being woken up.

    @Helen321 - I know how you

    @Helen321 - I know how you feel.  My mom had a terrible experience there as well.  

  • abrub
    abrub Member Posts: 2,174 Member
    And for emphasis

    I'm in the midst of a new concern (pain where my cancer is) and MSK got me in quickly for a scan and an appointment with my dr.  I have an MRI on Sunday, and will review it and be examined by my dr on Monday - they've been very responsive.

    Alice

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    abrub said:

    And for emphasis

    I'm in the midst of a new concern (pain where my cancer is) and MSK got me in quickly for a scan and an appointment with my dr.  I have an MRI on Sunday, and will review it and be examined by my dr on Monday - they've been very responsive.

    Alice

    will be thinking of you Sunday and monday

    very happy to hear they got you in so quickly. 

    - apologize for all lower case. typing with a broken wrist hurts, so i'm minimizing buttons/keys. -

    Tru

  • beaumontdave
    beaumontdave Member Posts: 1,280 Member
    Trubrit said:

    I understand your feeling, abita

    The CRC forum is smaller now, with fewer members; but only a few years ago, the forum was busy. Sadly busy has its drawbacks. We had three or more members passing away each month, one week we had three alone. We had allot of forum members who left at that point, as it is emotionally hard to deal with death, even with members on a forum whom we have never met. 

    On the whole this is a positive forum, but we HAVE to deal with death, as it will come to pass for many of us.  The key for those of us who continue to post on the forum is to accept death; others and evenutally our own; and move forward with the knowledge we have gained over the years, so that we can help those who are entering the forum.

    I am glad that you have good Doctors, to keep your spirits up, and family members.

    Tru

     

    I think you're exactly right

    I think you're exactly right Tru, "momento mori" is at the heart of Stoicism, and it's simply to remember you will die, and so live accordingly. That outlook helps me want to be here for others, especially the new, terrified ones. It's also allowed me to be there for my father a year ago January, for my brother in-law before Christmas, and an old, dear friend these last few weeks, all needing help to a peaceful ending. I don't know that I'm yet fully at peace with my own mortality, or even close, but I do know that I've come a long way. Now my mother is diminishing cognitively, and has hip and leg pain, similar to sciatica, but debilitating enough that she can't be alone. She's 85 and has rebounded a bit, but now her three children and some other family is with her 24/7 at her home. It's sad to see her dependent after a life of giving and caring for others, but it's also neat to take the time to sit and talk, or play gin rummy with her for hours, things I once wouldn't have taken the time to do[Holiday stuff and taking her to dinner not withstanding]. However it all plays out, I know I'll cope with the reality I'm given.  Sorry for going off topic, but I needed to get that out................................................Dave

  • beaumontdave
    beaumontdave Member Posts: 1,280 Member

    I think you're exactly right

    I think you're exactly right Tru, "momento mori" is at the heart of Stoicism, and it's simply to remember you will die, and so live accordingly. That outlook helps me want to be here for others, especially the new, terrified ones. It's also allowed me to be there for my father a year ago January, for my brother in-law before Christmas, and an old, dear friend these last few weeks, all needing help to a peaceful ending. I don't know that I'm yet fully at peace with my own mortality, or even close, but I do know that I've come a long way. Now my mother is diminishing cognitively, and has hip and leg pain, similar to sciatica, but debilitating enough that she can't be alone. She's 85 and has rebounded a bit, but now her three children and some other family is with her 24/7 at her home. It's sad to see her dependent after a life of giving and caring for others, but it's also neat to take the time to sit and talk, or play gin rummy with her for hours, things I once wouldn't have taken the time to do[Holiday stuff and taking her to dinner not withstanding]. However it all plays out, I know I'll cope with the reality I'm given.  Sorry for going off topic, but I needed to get that out................................................Dave

    Ever reread what you write

    Ever reread what you write and cringe? That's me a fair share of the time..........................Dave 

  • abrub
    abrub Member Posts: 2,174 Member
    Trubrit said:

    will be thinking of you Sunday and monday

    very happy to hear they got you in so quickly. 

    - apologize for all lower case. typing with a broken wrist hurts, so i'm minimizing buttons/keys. -

    Tru

    I just canceled my appointments

    Something good came up, and I have to reschedule.  I probably won't go down for 2 weeks.  

    I hope you're feeling better, Tru.

    Alice

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    abrub said:

    And for emphasis

    I'm in the midst of a new concern (pain where my cancer is) and MSK got me in quickly for a scan and an appointment with my dr.  I have an MRI on Sunday, and will review it and be examined by my dr on Monday - they've been very responsive.

    Alice

    Concern

    When you have a new concern and they can get you in that fast that is wonderful.  Wishing you all the best. Please let us know how you are doing.  You've always been so supportive on this board and always followed your posts.

    Hugs!  Kim

  • danker
    danker Member Posts: 1,276 Member
    Avocate

    Yes. you do have to be your own avocate.  The hospital where I got my initial colonoscopy assigned me a surgeon and an 

    oncologist.  The surgeon was the most caring Dr. I have ever met.  The oncologist was a jerk.  So I fired him!!  Looking up oncologists at the hospital. I selected three and asked the surgeon to refer one of them ffor me.  She gave me a lady Dr. that I was happy with for the 7 yrs. she treated me.  I have been NED ever since the two lady Drs.  took care of me in 2010. 

    Good luck to all,may we all be NED!!!