Doctor’s Holiday Season

Appears I’m no longer to be considered a participant in my health care. No word from Patient Concerns and as expected the doctor tasked with answering my question on lack of communication has chosen to not talk to me at all. This has to be the strangest medical service on the planet here in Alberta. It’s so strange, the staff denies doing they are doing what they are doing when they are doing it. The nothingness of this state of being is leading to a numbness and disassociation that makes me feel unreal–not here.

Have an appointment with the family doctor Monday the 9th. Apparently there are test results and messages relating to my status as a human to be gone over. Since I’m not told in advance what any of this is about, I don’t think I’ll even guess any more. And does it matter? The 3 months on either side of Christmas are when doctors and specialists disappear. So not only do people who might know my history disappear. But since they really don’t know my history because they never talk to me, just issue orders, only they do hold the key to my files and when they go, the files are locked. Anyway, maybe it doesn’t matter if I have no files as no one reads them? Guess I’ll see.

Heard an interesting story about parents of very sick children who work out treatment chart for their kids to give to emergency room staff when they arrive at Emergency. No one touches the child until they’ve read the chart. It eliminates some of the frustration of explaining over and over what the child needs. Think I’ll do one up myself. My wife has spent many horrible hours being ignored by jackass doctors who WON’T look at my file.

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  • Carolyn Jones  On November 6, 2015 at 3:06 AM

    Your struggle is clearly continuing Scott. I wish you well in all your endeavours. As Derwyn and I age the words of Bette Davis ring more true than ever. She famously once said ‘getting old is not for cissies!’

    I’ve just read an interesting book and I thought of you. It is entitled ‘Die Wise – a Manifesto for Sanity andcSoul’ by Stephen Jenkinson. It’s not as morbid as you would think and contains a great many valuable insights. It had a positive impact on me – it would be good if it could do something to help you too.

    Kindest regards

    Carrie 😀

    • scottx5  On November 6, 2015 at 4:28 PM

      Hi Carrie, yes, still in conflict over being made invisible. Final straw was being told the the reply to my concerns from a doctor who doesn’t even know me required his permission for me to hear it. The alternative is to request his permission for my doctor to read it to me.

      This is like Alice in Wonderland except it’s time to leave the silly place, nothing more to be learned. You couldn’t write fictional characters as wacky as this–they defy all the rules of plausible character motivations and behaviors.

      Die Wise sounds like a good read. It’s really too bad that we are assigned such a bad batch of humans as seem to populate the medical services to accompany us as things wind down. Imagine if we miss used children in this manner?

      Anyway, there’s no escaping the need for medical care, and apparently there is no hope of running into humans anywhere down THIS rabbit hole so off I go to other adventures.

      How are things with you guys?

  • thesmallc  On November 14, 2015 at 7:32 PM

    Hi Scott. I am sorry your medical team continues to disappoint you. I know you have tried your best to improve the communication with them but they need to want to change as well. Their behavior is part of their culture, which is sad because their focus should be caring for their patients. They have created a culture that does exactly the opposite. It doesn’t make any sense.

    I hope your appt. went well. Please keep us posted when you can.

    • scottx5  On November 14, 2015 at 9:08 PM

      Thanks for stopping by Rebecca. I’d forgotten these people were considered my “medical team.” To me, they’ve people who pretend to know me and I’m not sure why. Maybe I’m famous somewhere? Or look like someone? I think they are mistaken.

      Saw my doctor and it’s only my platelets are low which explains the easy bruising and bleeding. Before it was chemo causing it and now who knows? If it gets worse, it gets worse. The doctor is off until mid-January, so there is nothing to do anyway until she’s back.

      Just got the letter from the oncologist I thought wouldn’t reply. He doesn’t know me or my case beyond a short summary file that could have been written for any one. Going to copy his letter and mail it back with corrections. Leslie suggested I do it.

      One cool thing happening here is that every board, agency and advisory committee attached to any government function like health and education has been told to freeze where they are. Under the previous government, local groups would nominate people to things like the Community Advisory Committees but these nominations were never accepted unless the person was a friend of the governing party. These political hacks have stuffed every community board right up to the university level and they’ve been scamming the taxpayer for years. So it might happen that more voices will be heard? Don’t know. I’ve contacted the Community Health Advisory Board, the Alberta Health Services Patient Concerns office, the Cancer Institute Patient Feedback Line and Alberta Medical Association’s Patient Forum and they are all a sham. At least the people at patient concerns are nice, but can’t do anything.

      Amazing how much effort goes into isolating the system from genuine patient concerns. Will keep you posted. The Christmas season is the worst if you are chronically ill. The health system essentially shuts down and part-time staff who are barely qualified fill in. Scary time.

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