This message is extremely long and contains several long rambling thoughts of mine, if you are at work you are advised to print this message and read it at a later time. I will not be held responsible for your punishment should you get caught reading an email for 6 hours. Seriously it will probably make much more sense if read at one sitting and work may not be the best setting. Proceed as you wish.
As you know, or could have guessed, I have asked myself many questions in relation to my Cancer since being diagnosed on November 9th, perhaps the most frequently asked is “why did this happen to me”. There are many others of course, some of which I have talked about, but today I figured I would give you a little background on some questions and then ask your opinion. I have never done this before, by that I mean ask for a response, but I feel that I am somewhat entitled to one from some of you and if not entitled I feel I would like one. I share with you all some of my most private feelings and thoughts without any expectations of a response and I really don’t expect a response from anyone, at least that was the way I approached this group in the beginning. At approximately the four and half month mark in the series I have come to expect responses from many of you as your past performance has established a given level of expectation, right or wrong that is the way I feel. Whether you are a frequent responder or have never responded before don’t think that I think any different of you, as I have always said there are many reasons why you may receive my messages and I am sure I’m comfortable with all of them.
But today is different, as I am going to ask for your thoughts, I don’t expect you to respond but I would appreciate it if you did. I will explain the questions that I would like you to answer and then explain myself again as it will hopefully make most sense that way.
Question 1 (a two part question) : Why did this happen to me and why did this happen to me at this stage of my life?
Background: So you all know I was living on my own, really enjoying myself, believe it or not I was starting to switch my focus and priorities from the social settings to my work. While I did and still do like to enjoy myself I was beginning to do it in different ways than just a few months prior which saw me act very much like the student I was April 98′. I was running my own business when my Cancer decided to interrupt my plans, and I was just ready to hit the base of the growth curve. Another few months and I would have had at least one person working with me and I would have had a pile more debt, in fact I had been delaying the accumulation of more debt for about a month. Of course that was due to procrastination, OR was it? In addition I graduated from Memorial in April 98′, originally doing a Coop degree I switched in the Fall of 97′ to graduate early. Had I not switched I would have been in school this past term and looking to graduate this April which wouldn’t have happened and would have most definitely left me with two terms to go as well as a minimum two year delay of graduation. As I mentioned I was running my own business, a project that was about 18 months old, that’s 18 months of effort and commitment, and realistically much of my effort is ‘for not’ as I am no longer in the position to capitalize on my previous efforts. Again, the “why now” element of the question really baffles me. Look at your relationship with me and ask yourself Question 1, if you are one of the members in the group who don’t know me or have only known me for a short time just base your thoughts on what your experiences have been, with Cancer, with me, etc.
Question 2 : What strikes you most about me, my strategy, my messages, etc? By that I mean what hits you most, what gives you the most significant reaction, positive or negative I don’t mind. You can go either way on this, if there is something you really agree or disagree with let me know, if there is something that hits you in the heart or angers you again let me know.
Background: I have never really designed a master plan to this situation, as I say to you I just ‘go with my gut’. I sit and write to you all on the spur of the moment or with great intent, I write with a purpose or for no reason at all, and I find I have switched my approach to my situation and the email group a few times. I know what some of you think of me and my thoughts but the vast majority of you have been silent, I am curious to know what your thoughts are in response to mine. I feel that many times I may have been harsh or potentially critical of other people’s thoughts, and I guess that could have “scared” someone from writing. My brash “in your face” approach I’m sure only added to the difficulty of responding to someone in my situation as we can all agree this is a difficult situation. That said, know that I am interested in your thoughts and feelings in relation to me, my strategy, my messages, etc. This question really stems from my interest in your thoughts, don’t be worried about what to say or offending me, if you feel like writing write what you feel. That is my thought behind this question.
Question 3 : What do you think about a “Patient Coalition”? Or a patient advocate group, don’t worry about the name just the concept.
Background: It is no secret that my experiences with the St. John’s Health Care Corporation have been positive and negative. I don’t think I write about most of my negative experiences, many of which have been in the form of confrontation with a select few Nurses and some healthcare “professionals”, but rest assured that they occur too often in my opinion. That said I would take home 95% of my Nurses and care for them as if they were my own, my overall care has been great. In fact it has been so good that I am wondering how Princess Margaret will stack up as the bar has been set high. But, and there is always a but, I have had several “run ins” with representatives of the healthcare system that have been unpleasant to say the least. Yes it is true that I have brought “most” of them on myself but it has only been in response to what I feel is poor performance or a lack of a patient focus. Being a business person I have a customer focused mind and this type of mind is not conducive to all areas of the healthcare system. Since my latest confrontation, which occurred yesterday, involving the registration system that I find to be unnecessary and completely inconsiderate of the patient/customer. To help you understand, there is one registration desk that every patient must use before using any hospital service. To give you a visual, picture a herd of cattle being run into a slaughter house (it’s not quite that bad but…) the line up is often well out in the main entrance of the hospital and the real reasons for this process and “policy” are for bureaucratic convenience as far as I can tell so far. Of course waiting in line for 30-60 minutes can be dangerous when you don’t have an immune system, not to mention extremely tiring for someone with low blood levels. But my frustration is not for my situation as I often explain, how about the 65 year old widower who gets a taxi in to the hospital with low blood levels, he who is afraid of the hospital in itself yet let alone the disease that is running throughout his body. He is told that he must register before seeing the doctor and he assumes that he has no other option so he goes through the “necessary” process that the system, which exists to cure him, has designed. I find great fault with such a system and refuse to use it. Sorry for the rambling but I tend to get a little passionate about these types of things, back to the background. As a result of my feelings I refuse to register and am prepared to suffer any consequences that may follow as a result of my actions. (This may result in you seeing me on the NTV Evening News some night explaining how I have been cut off by the healthcare system, but I am a principled individual and I will stand by my actions. Of course that is a worst case scenario and with a little luck and probably a lot of effort we’ll be able to switch that stupid system.) Now the point of that not so little story was that from my confrontation yesterday I have decided that there may very well be a place for a patient advocate or a coalition to act in the best interests of the patient as no one seems to be doing it at the moment, at least not without attempting to satisfy other agendas as well. What do you think, surely you have had a frustrating experience with the medical system, or you’ve wondered “who designed this system”. Just another thought of mine that may one day soon be a reality.
Now if you have made it this far you are determined, I never meant for this message to get this long but as I said I sit and write and whatever comes out, comes out. I look for you to do the same.
No pressure but a response would be appreciated, have a great day.
Geoff
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