We can’t see you

Thinking about the Virtually Connecting question “Why We Blog”… As a medical patient with major heart problems along with less threatening skin and colorectal cancers the sense that I exist as a person is simply not supported by the medical system. There is first, no continuity of care, no affirmation of how my life continues between appointments, none of the markers of “being here” that a living person normally accumulates and an apparent need by medical people for me to be polite, understanding of their stresses, and to never complain, act sick, or display the obvious lack of discipline the unappreciative patient is known for. And for God Sakes  leave off the talk of death, you didn’t die, (for very long anyway and that was at another hospital with different doctors and nurses and you came to to us almost gone, and really we saved you even though it wasn’t actually us and you know? Just shut-up).

Truth is, everything is mixed up and what I remember is not what they remember because “they” are always different (but of course also ALWAYS right:

Same family doctor and same clinic but because she, my doctor, (two individuals over eight years) is “my” doctor, other doctors in the clinic (who also exclusively staff the local hospital) will not contact her(s) if I turn up tragic and needy. What she knows about me is almost proprietary and that’s how the dying thing and the months of misery and two heart attacks came to be.

Continuity as in vacation and maternity leaves mean my file goes into limbo. Follow-ups, exams, tests, monitoring and even receptionists simply STOP. Chronic but unknown, the channels are closed, the care is away, gone. The patient abandoned, without history needs a crisis to get attention and then in-crisis must clearly represent themselves or endure the entire process of diagnosis again. Or miss-diagnosis again and again.

Time to stop. I blog to keep from disappearing.

Another change

This changing my mind thing is a continuing feature of this blog (and my life) so if you’re tired of it stop here.

To avoid being treated like a useless nothing it came to me that I should detach myself as much as possible from the medical system and step one was to embark on an unscientific study of what happens when I reduce my meds to prolong the periods of time between trips to the doctor to get my prescriptions filled. I know this sounds stupid but going to the doctor has become a declaration of total failure of myself as a person. What other type of person would submit themselves to the care of  people who have no use for who you are–and in fact insist you admit your worthlessness and inability to understand the world to them personally and in a couple of cases have blandly pointed out that if I don’t like it, it’s no worry of theirs if I just walk away.

It would be paranoid to say directly that since there is only ONE health-care provider in the whole province of Alberta that offering walking away as an alternative is to say I’m welcome to go and die somewhere. That, well, does seem a bit extreme–even if it does feel like the truth. So lets just say these people are so tired of sickness and the way it twists a person around that they are no longer willing to “put up with it” and if you want help you’ll get the same treatment a clerk at a hardware store would give to an unreasonable customer. And accept it because that’s all there is.

Since I believe I shouldn’t have to debase myself in order to stay alive, my strategy was to detach but the prescription thing needs to resume. My heart, in spite being scar tissue, implanted valves and surgical mesh is still vulnerable to stopping and starting at will without meds. Strangely, headaches, ringing ears, dizziness and even arthritis in my hands and joints came back almost immediately. All of this is normal, but much enhanced by lack of medication.

So, always full of plans and schemes, the next play is to stay on the meds, endure the useless check-ups once every 3 months and pick-up my prescription renewals. The 3 month cycle is mandated by the insurance company that covers my medication costs and not based on some sort of care plan. IF I ever bother to bring up a problem there’s no time to investigate and if there are messages from my specialists that haven’t been lost, I always get them months too late to act on anyway. This streamlined scheduling has advantages in that I can substantially reduce the physical pain at a small investment of time while enduring the minimal amount of disrespect the system seems unable to resist delivering.

What amazes me is given the high level of training over a long period of time going into medical education, that being a caring person isn’t considered a necessary prerequisite to medical school. Sure, it’s a shame to turn away all that tuition money by rejecting someone who’s only limitation is lack of empathy–it’s a lot of money I hear. And maybe that’s the point? Medicine is just a business in the unique position of having customers who must put up with whatever service level medicine feels like offering? Add to this the pressures of work overload that medicine appears to value as a proof of expertise more important than care and it’s not surprising that medicine fails to support human needs.

Different

Back from a very stressful few days in the city. Event one was an appointment to see my Cardiologist about the slow growing aneurism in my heart. Scar tissue from two previous surgeries to the aortic valve have slowed its progress so this was a follow up after an exam in mid-October. Three hour drive on northern Canada roads in January to get there only to find the appointment had been cancelled without telling me. Plus the cardiac clinic is so booked there was no one else to see me–too bad the system has no awareness of what this does to people and their families with chronic health problems. Communication failures are 100% common so it’s back to phoning before appointments and understanding that there is no one to look after you, so you better be tough or you die.

After that screw-up my appointment with the new Oncologist happened the next day. She’s a nice person who answered questions to things I’d never been told because my assigned oncologist quit, my family doctor is never available and people who “treat” me at the branch clinic DO NOT answer questions. It was a nice interview that resolved nothing as I can’t be treated at the main clinic because it’s six hour return drive with the blood test one day and if my platelets are good, chemo the next. Since I usually don’t pass on the first try and you don’t know if you passed until the following day, each treatment “day” involves 4 long days for two of us plus 12 hours mid-week driving.

With the rural service I can get blood taken in the morning at the hospital a few blocks from my house on Tuesdays and know by 3:00 PM that day if I “pass” and if so I only lose one day to driving and infusion on Wednesday. If not, it’s back to give blood the next Tuesday and only an hour lost. The people at the main center are nice but are set up for locals only and make it very difficult for someone from out-of-town to be treated.

This is supposed to be a Provincial medical system but city and country services are not comparable. At least in the country I know my treatment will be sloppy, unprofessional and performed by people I don’t trust or like. But it beats city people who are the same type with better manners who will kill you just the same.

At least now that we’ve seen my new Oncologist it’s obvious the whole idea of trust is an illusion. Medical people I deal with are technicians and being a person just isn’t part of the game.

Start again?

Stopped blogging about my cancer because I find the role given me by cancer and the industry it supports is to be voiceless, compliant and weak. I’m told appreciate poor service, lack of communication and the kind of dismissal complainers receive even when I ask simple questions about my care. But the worst is to be taken as some crazy person who misunderstands the world.

Since I gain no strength or support from the system–only sickness and dismissal–it’s confusing why even bother with this shit? And the answer is that a person learns from every experience, good or bad and nothing is gained by silence. This is what I’m given so maybe writing about it will help.

Zero Expectations

Time to give up on communication among doctors being passed on to me. Had thought the fancy Cancer Patient Navigator thing would keep me in the loop but it seems she’s so low in the hierarchy, she has less influence than me. And since the medicos at other levels are apparently under orders to never be in contact with me the outside the controlled environment of their office. Where their scripted assurances which vanish like smoke when I leave their presence. It’s drop expectations to zero and ride the shit out on my own.

I believe it will actually be healthier not to bother these “care givers.” Talking to them makes me feel belittled and at fault for having concerns. They break every promise they make and seem entirely unconcerned–how do you deal with people like that?

Some solutions:

Go back to male doctors, females are powerless and daring not to assert themselves make up though-girl stories to make themselves feel powerful but do me any good. To me their stories sound like promises but they aren’t and I get punished in feeling belittled and lied too.

Men may be dumb but at least approachable. Their stories are more transparent and less hurtful because a person need no invest trust in their obvious bullshit. This is way more reliable to me. I can see into the BS and this prevents it from being “personal” which hurts a lot less.

Women are adept in organizational fantasy worlds where everything is a giant game of pretend. Men have other fantasies and self-delusions and maybe I understand them better? When it comes to living or dying it’s better to trust no one–and that’s all it is?

Of course, these are all generalizations but I’ve used up my more reasonable beliefs being sick, fed chemo that makes me sicker and then asking for help and apparently being deliberately ignored.

Silence

Rule one of medical service: do not transfer to another clinic just because it is “convenient.” Once you are out of the city, you are out of sight. I transferred from the main Clinic in Edmonton to a smaller but closer satellite clinic and this means NO ONE returns your calls including your assigned specialist, your Cancer Clinic Patient navigator, the Cardiologist in charge of making sure my chemo doesn’t do too much damage to my heart and even my own doctor.

After my second chemo cycle it turned out my platelets were too low which increases leakage in my heart. Then my blood pressure dropped (to the point of falling down as my legs folded under me) last week so I’ve stopped  on advice of the triage nurse and am withdrawing from them. Blood taken today had too low a white cell count so no chemo until possibly next week. Because I don’t have chemo I don’t get a consultation so I foolishly called the Oncologist whose assistant promised a call later today which didn’t happen. And I’m betting won’t happen tomorrow unless it’s soothing bullshit and a suggestion to go away until they are ready to see me.

So this is how small town chemo is done: if the last dose hasn’t destroyed your ability to clot blood or crashed your immune system you get your regular each 2 weeks dose and start the sickness routine all over again. Since no one calls you to tell you if the dose has been adjusted, your next treatment might or might not happen pushing your 2 weeks cycle to an unknown, delaying the upcoming heart surgery and unraveling your life.

The medical system, like education, is based on face to face contact. If you are as little as a phone call away you don’t exist.

medx

Though I’m not unhappy with the Stanford Medx xMOOC on Patient Engagement it does seem ironic that the course seems so unresponsive and instructivist. That’s exactly how I experience the medical system and really, I wish it didn’t trigger negatives in me but there it is–a system unable to see its own faults against my mistrust. 

The discussion area is essentially a series of one-shot comments without any of them sprouting out into real discussions. Also comments don’t appear to “count” or can’t be found without extensive searching and I’m thinking that challenging or deemed off-topic comments are edited out. More obviously of course is I’ve had so much shit from los medicos I’m blinded by bias, seeing only the bad and maybe being paranoid. Probably and so what?

Even though ANES205 Patient Engagement irritates me in a lot of ways, I am learning strategies on how to deal with my own difficulties. An example is in my comment below (that disappeared from the discussion area) on the irrelevance of specialists as a resource that is unreachable–they see you, you don’t even ask to see them. Boy it’s going save a lot grief cutting them out of my reality. These are people so exalted in the system that their directives are not even meant for implementation–only to inspire awe and to amaze the foolish into thinking they give a rats-ass. They clearly have a function but no obligation to patients.

The other realization I’ve had is the medical system is so without imagination that being a patient at a distance erases you from their minds. These are tactile people, slaves to their sensing you in person. On the phone, printed out on a chart, or online you aren’t there. Adrift and vaporous you must enter their cloud chamber to materialize before them. Out of sight, out of mind.

To be fair, as a problem I’m not much fun. My heart leaks at the incision where my second implanted aortic valve rests. As a result, my chemo mix needs to be altered (which hasn’t happened delaying my further chemo by making me too sick and weak to continue). Weaker chemo will stop destroying the ability to slow the leakage by making platelets to plug holes in the incision. But the chemo also makes me dizzy and clumsy by lowering my blood pressure causing me to have to stop my BP medications which also help reduce heart pain….

In the midst of this I have not been able to talk to anyone at the doctor level or higher since before chemo started six weeks ago. You cannot call the specialists though I’m told they do communicate with my patient navigator who is silent and my own doctor only knows what I report to her.

My Medx comment on someone’s comment:

“…really like your global outlook on a patient’s “world.” My experience is actors in my medical practitioner world fall in and out of use. Specialists are normally the first to go. Existing behind departmental walls and protected by receptionist / assistant bouncers my sense it they treat by permission only and are best un-relied on for your own survival. Next level are “statuses” you are given to assure you that care is consistent and even available on demand. These assurances are simply empty products of faceless institutions. No one has time to monitor your care outside your actual presence in their face.

My sense is all institutions exist for their own survival and rationalize down to efficient processing only. Patient engagement is seen as an interruption in the flow of “care” so will be noticed. It’s hard to be a patient with so many actors trying to shape you into a mold that fits their system.”

An Answer

Since last Thursday I’ve been trying to get an answer on the results of the CT scan that was ordered by my cardiologist. What will the results of this scan mean for my chemotherapy starting on Wednesday? Since I won’t be seeing the oncologist until Tuesday, when this will be explained, should I go ahead and have the central IV line surgically implanted on Monday for the chemo only to find it needs to be removed in order for my heart to be fixed first? (Yes that sounds crazy but since no one would talk to me up to yesterday I’m forced back on my experience being considered crazy until I actually die–and then get medical attention).

Yesterday, Weds I went,out of frustration, to my doctor’s clinic and asked if they had received a report from my cardio or oncologist. Yes, a report had come in last Thurs afternoon concerning the results of the CT and a recommendation from the cardio’s office. No one called me about this because the message was addressed to my doctor and privacy rules forbid a nurse or receptionist from passing the information on to the patient. Since my doctor will be back at the end of the month there was no reason to tell me anyway as it will be cleared up then. (Well, “then” plus the normal 5 week wait to get an appointment with the doctor–about 2 months after chemo starts). When city doctors tell me to “see my doctor” they don’t understand that doctors are seen by appointment only—not by patient need. A person can walk into the clinic and wait around 6 hours to see any random doctor who has a few minutes but can advise or treat because you aren’t their patient.

Based on the information from the clinic I spent the afternoon yesterday calling the cardio and the cancer clinic in the city where no one would answer my question about results. After about the 5th or 6th person telling me they could see the report, but not read it to me because it’s “confidential” (and can’t be spoken over the phone), I just broke down and gave up.

About an hour later a doctor from the cancer clinic called me and said their nurse had reported that I was “in distress” and could he help? I told him the story of my last experience with my heart made me serious about being told about my condition and simply wanted to know the results and recommendations of tests on my own body. He told me the results but couldn’t give the recommendation on the phone in case I wasn’t me. Results were: I have a stable “pseudo-aneurism” on the incision line from my last hast surgery, which puts me at higher risk with chemo. No more could be said.

This afternoon the receptionist at my doctor’s clinic snuck me in to see their new doctor. He was able to tell me the actual results: Yes, I have a pseudo-anuerism on the incision line on my aorta near my replacement valve #2 and there appears to be fluid accumulating there. Yes, I will need open heart surgery again to fix this soon. But, since there are probably malignant cancer cells still left in me from the removed tumor, the risk is least for chemo and then heart surgery in the new year.

Since no one will really believe how fucked up it is to live here with all these absurd rules I’m gong to stop writing about my medical condition. It just brings back the horror of dying while people stood by and watched and I can’t handle it. This is what happens to a person who lives at a distance away from people why are convinced their system serves everyone the same and is replicated by distance education people who ignore this factor too.

The plot gets interesting

As mentioned I managed to get a female Oncologist and she managed to think to call my Cardiologist who called me this morning. Good sign #1 is they like each other. That matters in a system that doesn’t cross communicate between specialists very well.

Good sign #2 is the CT I had in June for the cancer can be compared with the CT I had April. Though the April CT was supposed to be for my Cardiologist, it was never sent to her (it did go to my doctor but she wasn’t told what to look for). The June CT actually did go to my Oncologist and with her in contact with the Cardio there are now a whole bunch of specialists viewing both images  Along with the possibility of the whole thing being coordinated to include my colorectal surgeon and my heart surgeon.

New schedule now might include another CT for confirmation or (remotely) to have heart surgery to add another stent over the aortic “bubble” that sits downstream of my most recent implanted valve. Or the chemo comes first.

It’s starting to look like I’m serious research grant material:-) Since I’m already signed up to donate my body for research it might as well start before I’m dead.

 

Waiting

A long process this waiting for the next appointment is. Have had a full CT scan of the post-operative me and am now booked for an interview with a case doctor at the Cross Cancer Institute in Edmonton on July 24.

Haven’t written because there’s nothing to report between the removal of the tumor that included the possibility of cancer cells escaping into the rest of my body. As expected, the month and a half wait goes slowly.

I’m tired of it so it’s time to be more active. Have a dizziness thing that started about a year ago. Begins by my going cross eyed, dizziness, nausea and sweating. Scary loss of control but it can be managed with relaxation. If it carries me away then I fall down, so in risky places it needs to be focused on. Happened in the store yesterday and I just stopped and told people around me it’s normal. Used to feeel vulnerable admitting weakness, can’t do that any more.

Next is finding out if the cancer spread and will I need chemo.