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

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

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

Hi Sue, where do you find the blogs from women who are not entirely sure why they are having one treatment. Paula XXX

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.

I research lots of sights. Probably the absolute best site is the one where I found this video. It is the American Breast Cancer site. Here is link: http://www.breastcancer.org/ I also network on this site. Hope this helps. Suex

Video: Difficult Patients by Oncologist Brian Wojciechowski

14 Replies

suzieq
Member
10 years ago
I couldn't agree with you more.
jd48
Member
10 years ago
I completely agree Suzy. If someone finds it easier to go along with what is being recommended that good for them too :)

We all have to do what feels right to us at the time.

Frankly I am in no way advocating 2nd and 3rd guessing everything that is said to us every time. Only that is one is not feeling 100% right about a situation they should speak up and never be affraid to do so.

I have specialists who i have known for many years now, been through 'Hell and high water' with who I trust implicitly to take my history into account without my being all nagging and asking 1000 questions and frankly with those guys I am.usally more than comfortable just go along with most of the time.

I just believe that when one is in a new situation it is important to remember they have the right to ask 'why' and never to be affraid of asking or even challenging if they are uneasy about something. They should not be affraid of standing out from the crowd as doctors and nurses are all human and while sometimes they may see us as 'just another case / job' speaking out is not necessarily goong to get them angry with us - if anything being honest and telling them we are uneasy or scared will get them to see us as human and will get them to convey the information in a way which will help us make the right decision for us :)
jd48
Member
10 years ago
LOVE the pre Op chat Suzie :)

I had all my surgeries without general aneastheic and I know what you mean. I always joke with them before they do get busy that since I am wide awake they better behave ;)

It is always good to be seen as a person rather than just another case and I reckon consults are the same thing.

I always remind them that I know I am a pain in the behind but that it is not personal, that I do trust them but for me to get the best possible outcome and the peace of mind I need to know exactly what is happening to me and what my options are. Afterall, they too would do the same in my shoes.

Usually makes them laugh and we get on with the job...
suzieq
Member
10 years ago
Wow JDakic, you are a true survivor! Like you, I find my doctors are only too happy to deal with "difficult patients". I do keep mine on their toes but I also try to intesperse my difficulty with good humour and thank them for caring about me. We are all human and all like to hear that.

I found keeping a journal, getting copies of every test result, particularly pathology as well as medical history, family medical history etc kept me feeling I was in charge of this disease. Reading latest medical journals etc. Having copies of pathology helped me research my own odds and helped me make informed decisions and allowed me to properly understand why a particular treatment was or wasn't recommended. For me, knowledge is power - I just gives me peace of mind. I also found I needed less and less appointment time. But, we are all different. I completely understand women who just don't want to know and accepts everything the medico says. This is their way to survive the disease. It is what keeps them strong. We are all very different. I would never tell a woman how to manage her disease. What works for one may not work for another. I love the women on this site. I love reading their stories. Yours was truly inspirational. Thankyou
suzieq
Member
10 years ago
LOL. Love your story. I recently had to have my ovaries removed. I have a brilliant Gyno and a great General Surgeon who was assisting. I was in theatre getting prepped and the two of them were gathered in the corner with the anaesthetist chatting happily together before the Op. I suddenly looked over at them and called out: How are you all today? I am so happy you all look happy and refreshed. Did you all have a good breakfast? And is everything alright at home? Everyone cracked up. It helped me feel more relaxed and comfortable. But at the same time it reminded them I was a real person and they needed to be at their best. Suexx
Jennyho
Member
10 years ago
Thank you. We are used to being meek mice but where our health or the health of our loved ones is concerned the proessionals should expect and want to settle ALL our concerns. Great video.
suzieq
Member
10 years ago
You go girl! Well done. Like you, I too give my doctors a written list of questions and hand to them when I sit down. It helps us both. He knows what is really concerning me and can address those concerns before we start and I have a clear head not thinking about what concerns me. We all have to be vigilant about our treatments. I will relay this one experience to you I had after chemo and rads when I was put on Aramatose Inhibitors as part of my treatment as the carcinoma was estrogen positive. I developed a severe infection in my breast and had constant Urinary Tract Infections. At the same time I developed a rash over my body from rib cage to knees. It resembled molten lava, my skin hardened and the itch near drove me crazy. No treatment relieved it. I didn't sleep for a week. My Specialist put me in hospital to try and clear the infections but kept trying different antibiotics thinking the rash was allergic reaction to antibiotics. I eventually said to my husband the only thing I can think of in the past few weeks that has changed is I have been put on this drug Femera (Letrozole). My husband went home and googled the drug and the side effects of severe allergy is exactly what I had been experiencing. I immediately ceased the drug and the infections cleared up and the rash disappeared. I bet there are a thousand stories on this site....
Brenda5
Member
10 years ago
That was great Sue, thanks!
narwoo
Member
10 years ago
Thanks Jdakis

Your post was extremely helpful. I have written down your vital questions and will use them at my next appt.
suzieq
Member
10 years ago
I research lots of sights. Probably the absolute best site is the one where I found this video. It is the American Breast Cancer site. Here is link:

http://www.breastcancer.org/

I also network on this site. Hope this helps. Suex