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suzieq's avatar
suzieq
Member
10 years ago

Video: Difficult Patients by Oncologist Brian Wojciechowski

I am often reading blogs from women who are not entirely sure why they are having one treatment over another type of treatment or are perhaps confused or frightened due to lack of proper consultation.  As women we generally don't "want to be a bother".  We respect and know specialists are very busy but I am a "difficult patient" because I have to know everything, the how, when, why and what for and of course there is always the "are you sure doctor?".  I am just one of those creatures that must know everything probably because I was harmed by a medical error in the past. For me knowledge is power. That is the only thing that gives me peace of mind and confidence in any treatment plan.  I must be on board and have all the facts.  For all those "difficult patients" out there watch this video.  It validates us and is empowering:

https://vimeo.com/136330348

Suexx

 

14 Replies

  • THANK YOU THANK YOU THANK TO

    I do so love you for posting this.

    Women so often are feeling intimidated in a medical seting and lets admit it - majority of doctors we run into are men who have no clue how our bits work as book learned knowledge never is the same as living it so they too are pre-disposed to think we do not know what we are saying or will often overlook what is being said.

    I survived 20 years longer thus far than expected due to several unrelated medical.conditions (and i am just 44yo) and 4 absolute medical stuff ups (where specialists were subsequebtly floored I had survived it) purely because I am an absolute pain in the beckside when it comes to my health and what they want to do to me.

    Not that I reccomend it but in some of these extremes there was an ocassion where I knew they were disregarding what I was saying in the emergency where in the morning I had walked out in the hospital gown, canulas in my arm and all got into a Taxi and had him drive me to my Immunologist marching into his office asking for help. In his words - that action saved my life. He did say I could have phoned too and he would have stepped in I was fearing of what they might do to me against my will as they wanted to treat me in a way I knew was dangerous for me so I bolted.

    On another ocassion where a nurse wanted to give me warfrin without saying what it was and referring to it as "it is something we give all patients and it is on your chart" and my demanding a Dr before I would let her inject me with anything that Dr had not specifically discussed with me and I agreed to I had to go as far as getting out of the bed picking up one of those damn metal things they hang IV Fluids off holding it lije a baseball bat and yelling she better get reinforcement as they would have to fight me, tie me up and forcably show that crap in my arm unless they got a Dr to speak to me 1st. Yes - extreme but realising it was easier to get a Dr they called him and upon my asking WHAT the content of the damn injection was since I suspected it to be warfrin and reminding him I had 2 cerebral anyrisams and bleeding conditions he changed colours, profusely appologised for failing to put that in my chart. Had they given me the damn warfrin chance is I would have bled into the brain cavity before anyone could realise it.

    I will not go on and about my history  and good and the bad when it comes to medical professional encounters but guys it is important to remember that in comparison to the rest of the world we are very lucky to have a good medical system and well trained professionals.

    Having said that, they too are mere mortals. They have their good days and bad days and days they are tired, may have had a fight with someone at home or work and their attention span is not 100%. May sound callous for me to say this but it is true - dealing with our health is their job and we all have jobs and know how easy it is to stuff up at work when having a bad day. Consequence of them stuffing up may be detrimental to our lives though so we have to be vigelant.

    We have great doctors but we have just one life to live so it is super important we are both Championing our health and well being and ensuring we are 100% informed about all risks vs benefits.

    Never ever ever be affraid to ask WHY. If they react badly remind them it is your one and only life that is being duscussed - it is not personal or that you do not trust their experteesw or professionalisam but if they were in your place or their child spouse or other family member was there they too would act the same. You are not doubting them by asking - you are ensuring you understand and are confident about your choices.

    It is so important to ask WHY and WHAT RISKS ARE THERE IF I DO IT and WHAT RISKS ARE THERE IF I DO NOT DO IT.

    And when they answer those questions then again ask WHAT MAKES YOU SAY THAT?

    Make them explain why they believe that scenario is applicable to your particular situation.

    We have just 1 life to live so never be affraid to protect it. And never underestimate writing down questions ahead of the appointment.

    I SMS myself every time before I go to see a Dr so I do not forget something.as the phone is always on me. I even SMS while in the waiting room if I remeber anything else.

    When I go in I tell them I have a list on my phone of questions I have for you so that after we were done with their bit I will need to run through it and I place the phone on the desk to remind us as I do not want to forget if something that happens during the appointment throws me off.

    I even did that the morning after my surgery as the whole night I had questions about post-op recovery so SMSed myself some 20+ times and when they came arround with the jumior Drs the 'kids' could not stop laughing when I kept on grabbing the phone reading out question upon question upon question. I suggested (and surgeon did wholeheartedly but not meanly agree) I would be the biggest pain in the behind he would have to deal with on the day BUT having asked the lot helped me heal fast, avoid locked shoulder which I kind of realised initial symptoms off and recognise post-op infection when it was just 1cm wide so got It treated real fast before it became an issue :) 

    Not once in my whole life had I encountered a Dr who said my lists were a bad thing. When on paper many take the list off me and read it out aloud themselves and answer one questions at the time.

    I even write symptoms and progress pre appointment and then when they ask "how have you been" or "what brings you here" I either read it our or hand them the paper. Guys, it is easy to feel rushed or confused or even intimidated during the appointment. But if you prepare in advance you will remember everything and will often give them small vital clues about the condition they are dealing with which otherwise you would forget.

    Please remember to be thorough both in providing information about yourself and about ensuring you understand why they want you to do something. And if in doubt and the medical professional is not responsive do go elsewhere. Never ever accept anything less than complete transparency and detailed explanation about your condition or your treatment.

  • Hi Sue, where do you find the blogs from women who are not entirely sure why they are having one treatment. Paula XXX
  • So funny that I read this tonight as I am gathering my questions for my daughters next step that is radiation and yes I am the difficult patients parent.

    I have been on here and a few other sites and got information that was not told to us at appointments and have put them to the docs at chemo and yes I have done this a lot, he is generally very forgiving and will answer me what when or why,  but now the particular doctor who is a friggen idiot!!! who I yelled (not my proudest moment but in my defense she is my baby) at when she was really sick in hospital I want to buy him donuts now lol I got him in trouble with his boss mmm ooops sorry!!  

    Thanks for the video it has made me feel so much better for asking questions (I must remember to ask them more nicely or I will go broke buying donuts lol)

    Cheers Sue xx

     

  • Sue, Thank you so much for sharing this. It's all so true. We have to become our own advocates in this increasingly complex medical world. I hope there are more doctors out there withhis attitude, we need them.

    I'm sorry you have suffered in the past as a result of a medical error. I'm glad you have used it to empower yourself.

    Take care, Lyn