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My cancer situation

Discussion in 'Off The Beaten Track' started by Spazactaz, Aug 15, 2013.

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  1. spikydurian

    spikydurian Well-Known Member

    Spaz, we all care. We love hearing from you. Please just post whenever you feel like, K. (((( Spaz))))
  2. Kasey

    Kasey Correcting President Trump's grammar on Twitter :)


    as a critical care nurse, I am grateful that you have mentioned that there are several nurses who are "great" and treat you well. You may not feel the need to post about that; but as one of the nurses who has great pride in the nature of my profession, and how I perform my job, I am very thankful to have you acknowledge that. I realize that the negative experiences will have more impact on most people than the positive; because the positive is just "them doing their job", right? But the reason that the negative ones stick out so badly is because, more often than not, the good ones do their job....like in customer service, waitressing, whatever. The negative leave an impact more than the positive. As I was reading also, I am not sure what "pain patches" are in use on you, although what I am most familiar with for chronic pain issues is Fentanyl; and those are only changed every 72 hours. I'm just saying that because perhaps you got confused as to when they were last changed? Or maybe they are something that are changed more often, I don't know. I just know that normally speaking, horrific nurses are rare, not the norm; and it's been sounding like yours have been the norm. Maybe a better talk with your physician about the exact orders of your medicines, even looking at your medical records, may be in order, to understand your plan of care as much as possible. For the rudeness, there is no excuse; but maybe there are reasons for some of the other things going on?
  3. kalamalka

    kalamalka Well-Known Member

    Vent and rant away, Spaz - I've been reading but not posting until now. I think and hope that most of us who've been reading this thread - and those who are posting - understand and wish we could be there to help smooth your way. That this is an outlet for you, with a bunch of people who care about something that has also been so important in your life - even if we don't know you personally - is a good thing. I hope your day tomorrow is much better, and your time out of the hospital is good!
  4. backspin

    backspin Active Member

    I absolutely don't think you're crazy! To me, at times you sound exhausted, in pain, and overwhelmed. And at times you sound amazingly strong spirited. Who on earth wouldn't be having a hard time if they were in your position? You're doing so well, Jesse, you really are. Tell us anything you want to; rant away!! We're all here for you.
    Vash01 and (deleted member) like this.
  5. Spazactaz

    Spazactaz New Member

    Yes they're Fentanyl patches.. I don't know WHAT the nurse thought was going on but from what she told the doctor they wanted to change my entire pain regimen after that. The problem was that the patch was all scrunched up and wrinkled and falling off, and suddenly I was in more pain than I've been in in weeks.... so I thought that might be the problem. So the nurse last night took off the patch, tried to smooth it out and taped it back on..... said if it didn't work she'd just give me a new one. In the morning I was still in lots of pain, but it was the new nurse on shift who refused to change it. I know it's normally 72 hours but this was just because of the falling off situation. And now the doctor changed it so they're to be changed every 48 hours because of this??!
  6. skateboy

    skateboy Well-Known Member

    I don't think you're crazy, Jesse. Thinking of you every day and sending comfort and healing vibes.
  7. Spun Silver

    Spun Silver Well-Known Member

    Crazy? You? Good grief!

    Some people....
  8. Kasey

    Kasey Correcting President Trump's grammar on Twitter :)


    Ok on the fentanyl patches. The problem with those is, they take a while to build up a therapeutic medication load in your system, being that they are only changed every 72 hrs. Perhaps putting a clear bandage over the patch can help it stay on (we call them tegaderm dressings, but I think that's a brand name). I'm not sure if that will affect the absorption or not (never tried it). Along with the fentanyl, you should have some other pain medications ordered for "breakthrough" pain, like oral medicines (oxycodone, hydrocodone, oral morphine, etc). Another option is a "pain ball", which is just under the skin and filled with a set amount of pain medication dosage that basically dissolves in a certain amount of time (great for surgeries and such). Perhaps you can just ask the doctor "what is my pain regimen" and go from there with understanding what you can have, how much and when. And of course, I would always encourage non-pharmacological pain treatments, like massage/acupuncture (not often found in hospitals, unfortunately), meditation, music or other distraction, etc.
  9. cruisin

    cruisin Banned Member

    Jesse, let me reassure you, no one here thinks you're crazy. We understand this is a place for you to vent, and we want to try and comfort you. You probably are depressed, but who wouldn't be under your circumstances. Possibly, talk therapy could help you with coping mechanisms. Maybe help you to deal with some of the difficult nurses. But, we will do our best to help you cope, as well. Kasey really knows her stuff, let her help you. Sorry, I've been MIA for a while, I've been off line for family reasons. I think of you every day, and hope for each day to be better.
  10. zaphyre14

    zaphyre14 Well-Known Member

    I don't know that anyone here thinks you're crazy. However you are dealing with a lot and I know from personal experince that in the US at least there are counselors who specialize in helping patients deal with critial illness issues. Perhaps this is what is being suggested? That you have someone to talk to who is trained to deal with the emotions and frustrations you're experiencing, rather than a bunch of distant strangers who, kind and supportive as they may want to be, are not in a position to actually help in person.

    Also, given your circumstances and the pain and medications you're dealing with, it's also possible that your perceptions of what's happening around you could be a tad distorted. What you're seeing as rude, harsh and negative treatment could be just brisk and businesslike and no-nonsense. Or the nurse could be overworked and stressed herself and reacting to what she might see as a patient demanding more attention than she can give.

    I know that the last time I was in the hospital a couple months ago, the first thing my roommate did when they settled me in was tell me how rude and inconsiderate and unhelpful the nurses and aides were. That wasn't my experience at all. But I wasn't in the same situation she was - sh'd had surgery and was in pain and uncomfortable and lonely; I just wanted to be left alone to sleep. Our needs were very different and so were our impressions of the staff who tried to meet them.

    There's no easy answer. It sounds like you've done what you can do by talking to the manager and getting your doctor's attention as to your pain levels. Venting here is fine. I'm just afraid that the negative aspects of your vents have given the impression that the hospital is negligent and the whole health care system has failed you. I'm just not sure that is the case. If that comes across as harsh or inconsiderate, I'm sorry. I do hope that you are getting the best care available.
  11. Moto Guzzi

    Moto Guzzi Well-Known Member

    (((Jesse))) I'm sorry you're in so much pain. I hope something can be done to make you more comfortable.
  12. Buzz

    Buzz Well-Known Member

    Vent and rant away Spaz! Let it all out if that is what will make you feel better. We are here to listen and cheer you on.
  13. skatesindreams

    skatesindreams Well-Known Member

    You are not crazy.

    Kasey, thanks for sharing your knowledge with us.
  14. yfbg722

    yfbg722 Active Member

    Jesse, this is your safe place to rant. If you're getting pm's from people who don't like that, just block them. They don't have to come and read this thread. Most of us here are happy to listen and try to support you as much as we can from afar.

    Taking day passes while the nurse you don't enjoy is on duty is a great solution. Do that as often as you can. The lazyboy at home has got to be preferable to a situation that causes you so much anxiety and if the pain patches are every 48 hours, hopefully that can be timed to be done by your night nurse.

    It's awesome that Kasey has come on with some good, informed suggestions for you. It must be very scary to try to navigate this mostly on your own. Know that you're in all our thoughts and we all want the best for you - and the majority of us want to keep hearing from you so please don't feel like you can't post. Say what you want to say. Block those who give you grief. You're the important one in all of this and it's your thread!

    Enjoy your day at home today - and I'm hoping it's as peaceful and pain free as possible.
  15. Vash01

    Vash01 Fan of Yuzuru, Medvedeva, T&M, Shibs, P&C

    Good morning Jesse. I hope you slept well. Enjoy your day at home.
  16. OliviaPug

    OliviaPug Well-Known Member

    Jesse, I can only speak for myself, but I don't think you're crazy. I've had my share of health challenges, and I can tell you that you are brave beyond belief. It is so difficult to deal with constant pain. Nothing is as difficult as that. I do hope the nurses and doctors can come up with a regimen that works for you. Don't stop advising them of your comfort/discomfort level though. Keep on them until they get it right.

    ((( Hugs ))))

  17. Spun Silver

    Spun Silver Well-Known Member

  18. rfisher

    rfisher Will you rise like a phoenix or be a burnt chicken

    No, you have not. Your posts are still coherent. :) We understand that you're frightened and overwhelmed by the entire experience. Post what ever you want. Most people here can't physically help you, but they are more than willing to offer emotional support. I've worked in hospitals many years and know it can be very frightening even with minor illnesses. Yours isn't minor. Ask questions here if you feel comfortable doing so. There are several of us who are medical professionals and will try to answer them as best we can so you can in turn ask your caregivers. We can't make diagnoses from afar or comment on your care plan, but we can explain some procedures if that would help you understand what is happening. Oftentimes, people are so overwhelmed, they simply don't know what to ask. So, feel free to post whatever you wish even if it's just wanting someone to acknowledge your pain.
  19. Spazactaz

    Spazactaz New Member

    Thanks everyone. :)
    Today is MUCH better.. woke up without that awful pain! And guess what... the nurse from yesterday didn't show up to work today!! LOL. So I'm not in a rush to leave the hospital at the moment. The manager has also been here to talk to me again and wrote down everything I had to say so if the nurse returns it'll be communicated to her. :)
  20. Spun Silver

    Spun Silver Well-Known Member

    EXCELLENT!!!!!!!!!!!! :D:respec::biggrinbo:encore:

    Very happy for you, Jesse! Enjoy your Nurse Ratched-free day! :lynch:

    ETA: "If the nurse returns"?? Cool.
  21. Buzz

    Buzz Well-Known Member

    Has Porki been to visit you recently?!
  22. BittyBug

    BittyBug Living in a Kleptocracy

    Jesse - I'm so glad to read that your day is going better. May it continue that way. :)
  23. gkelly

    gkelly Well-Known Member

    Glad you're feeling better! I hope the nursing treatment will work well for you from now on.
  24. Gypsy

    Gypsy Watching the Leaves Change!

    I am so happy today has been a better day. It is so scary relying on others. Just remember we are here to support you...so when you need it...rant away!!
  25. backspin

    backspin Active Member

    Hurrah for no pain, and for people listening to you!! Have a nice peaceful day, and enjoy your puppy if you do go home. :)
  26. Vash01

    Vash01 Fan of Yuzuru, Medvedeva, T&M, Shibs, P&C

    Excellent! Good to hear your day is going well. It will be nice to see Porki too!
  27. purple skates

    purple skates Shadow Dancing

    Glad the pain is better for you, Spaz. :)
  28. Spun Silver

    Spun Silver Well-Known Member

  29. Vash01

    Vash01 Fan of Yuzuru, Medvedeva, T&M, Shibs, P&C

    Wow! That was beautiful. Jesse is so talented!
  30. victoriajh

    victoriajh trying to ignore rod and find the eurosport feed

    THIS- Jesse our skating comunity is about SO much more than the ice.... i look for your updates daily and as pp mentioned wish i was closer so that i could help you more- hang in there
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