Category Archives: surviving

Impostor

The idea of being an impostor seems to be popular in the awareness of chronically ill people and it’s often difficult to narrow down what we mean. I won’t speculate on how other people define themselves as essentially unworthy to be regarded as a genuine sick person. The spectrum is too wide and I think a person’s self-designation varies from moment to moment.

For me, I volunteer for imposter’ship in cancer based on my apparent misunderstanding of what it means to “have” cancer. First, over the six appointments I’ve had with people designated as “my” oncologist, I’ve actually seen five different people. #1 involved two visits and then she ditched me when I became violently ill from the infusion and didn’t know the rules of contact. #2 was nice but being sick made me inarticulate and frustrated and I walked out on her. #3 was another communications failure. Our first meeting went badly and the second he opened with how I’d used up too much time asking incomprehensible questions. I don’t count the second meeting with #3 as he was clear I didn’t qualify for care and walked out. #4 was a nice doctor and we met a few times but her reports from the branch clinic where I was “treated” never seemed to go to the main clinic–which I was not allowed to contact nor did I bother, as I didn’t know who my actual oncologist was after #1 quit. #4 represented a few pleasant moments prior to the infusions where I said everything was fine. Since it was clear being not-fine pissed them off, why mention it? #5 could stand in for #4 as she was a real oncologist at the main clinic who my daughter thought I should see about my “concerns.” Our meeting lasted a half hour where it was made clear that all the people I felt had let me down were exemplary practitioners of care’ology, though it sadly does occur that patients become confused and are not reliable witnesses to their kindness.

Up to this point, half way through my eight month treatment schedule, (booked at the start for six months but I kept getting sick from the infusions delaying the next one) I gave up talking to any “official” person except the grumpy nurses who seemed irritated with me anyway and kept it short. Last infusion I left without any goodbyes from people I’d “known” for months. Had my post-chemo CT Scan, passed it and was assigned an oncologist to follow me for a year or two to see if the cancer comes back. I can’t remember her name or office number though she did call a few months ago to confirm my need for a follow-up colonoscopy, I haven’t heard a thing.

Since a person needs doctors to be a patient it’s time to stop pretending I’m a patient.

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Experiment

Since I’ve run out of doctors that are of any support to me, it seems time to stop being chronically ill, stop my medications and improve my diet. Starting with the heart medications first, quit them two days ago. Will stay on the diabetes med. Stay on aspirin to reduce cancer growth in my gut and continue the inhalers for COPD so I can function.

Besides the aspirin, there’s no cancer meds and the skin cancer is just there. My contact with whichever oncologist it is that is “watching” me (unclear who it is) seems to have stopped over a month ago when she couldn’t get in touch the guy who does the colonoscopies.

The cardiologist is not to be contacted.

My own doctor is a nice person but I feel very uncomfortable in the local clinic and can’t see her at the hospital because I won’t EVER go back there. So, in practical terms, my prescriptions are cut-off anyway.

The only person available is the lung specialist.

At some point, you have to protect yourself from indifferent care.

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.

My History

On Friday we drove the 3 hours to Edmonton for a dermatological exam of my left temple where my family doctor (FD) had removed a large mole about a month ago. Biopsy came back as skin cancer and the idea was remove more tissue to be sure it hadn’t spread. My understanding was the procedure would be done that day and included an exam for other spots my FD has no time to look at.

Unfortunately, this dermatologist had a clinic to run, intended to operate later and was gracious enough to freeze a bump on the end of my nose that appeared suddenly a few weeks ago. And then he was gone. At the front desk I was told to await an appointment convenient to their schedule. AKA “you do a six hour drive for ten minutes of my time and then do it again for this simple operation which will be booked in the AM so next time will also include an overnight hotel stay.” No consideration for the patient? You bet.

Had my FD read my medical record, first she would have removed the mole a year ago when I asked and she said it was “nothing.” To be fair, she is my second doctor at this clinic, (there is only one clinic in this district). Though my former doctor works in the same clinic, there is no cross-talk between doctors so you have ONE doctor. If that doctor is on vacation (mine was gone over 3 months in a row last year so when my prescriptions ran out and I had to get renewals from my cardiologist) you in theory can have any of the other docs IF they have time but they will know nothing about you–or should I say LESS than my FD knows about me? .

So, not knowing I’d had moles removed, she wouldn’t know that there was a dermatologist who had already treated me and knew my record.

This morning I called yesterday’s dermatologist’s office and cancelled any further contact. Will book my other dermatologist, or maybe I’ll forget it.

Below is a letter from the heart surgeon who fixed me twice, to my cardiologist who is in very infrequent contact. Not sure why with a department full of them at the U of A hospital. Probably because I have only ONE cardiologist?

My idea here is to write down my medical history here because I KNOW medical people don’t read my history or don’t believe it. Also, someone close to me said today I didn’t have my “story right” so I want to get it down before I’m erased by everyone. This is what the reliable surgeon sad about me and I’ll fill in details in later posts.

April 21, 2016

RE: JOHNSON, Scott PHN# 

I reviewed the recent CT-Angiogram on Scott. Although there was very slight enlargement of the aortic root and aortic root pseudo-aneurysm since October 2014, the overall appearance to me does not look very bad. As you will recall he has an ultra-complex history- I originally operated on him back in 2008 to replace his aortic root. Prior to this he had congestive heart failure with severely reduced ventricular function with an ejection factor of l5%. We had also performed a four vessel coronary bypass. He did well with this for a period of time. However, he had an MI in 2010 and had a bi-iliac stent and internal iliac embolization in 2010. In April of 2014 he had a myocardial infarction again and was found to have severe aortic regurgitation and aneurysm of the ascending aorta. Prior to surgery he developed renal failure and a cardiac arrest and had been resuscitated. He had hepatic failure as well as renal failure. He has been a long-standing heavy smoker with a 50 pack year history and has emphysema and chronic obstructive lung disease as well as hypertension and peripheral vascular disease. He was also morbidly obese with a BIvfl exceeding 40 kg/m:. We re-operated and replaced his aortic root and he gradually got better from this.

In 20I1 he was diagnosed with stage 3 colon cancer and had a lower anterior resection followed by chemotherapy.

Obviously with all of the risk factors that he has, any of further surgical re-intervention would be highly risky. I would just recommend a repeat CT-Angiogram in I years’ time.

 

Patient Engagement

Was talking to the Patient Relations and was directed to a new(?) department at Alberta Health called Patient Engagement which includes Patient Advisory and Patient Experience sub-groups. The apparent idea is to involve patients in building “Collaborative Relationships” with the health system and I’ve downloaded a copy of their guide: “A Resource Toolkit for Engaging Patient and Families at the Planning Table”.

Next step is for the system to recruit Patient and Family Advisors and then set up project teams to bring the patient voice to the planning table.

From the guide:

“Why Engage?

An essential ingredient to high quality healthcare is is actively including the voice of patients & families to improve quality, safety and health outcomes. There is also a growing movement within the Canadian public to be involved in decisions about how healthcare services are designed and delivered.

 Engagement Happens in Two Ways

  1. Patient and family Centred Care: Improving quality outcomes by helping care providers engage effectively with patients at the point of Care
  2. Patient Engagement: improving quality outcomes by effectively engaging with patients at the planning and evaluation table.

The institute for Patient and Family Centred Care names the following as core concepts in P&FCC:  

  • People are treated with dignity and respect.
  • Health care providers communicate and share complete and unbiased information with patients and families in ways that are affirming and useful.
  • Patients and family members build on their strengths by participating in experiences that enhance control and independence.
  • Collaboration among patients, family members and providers occurs in policy and program development and professional education as well as in the delivery of care. 

http://www.ipfcc.org/

Long Version of the toolkit http://www.albertahealthservices.ca/assets/info/pf/pe/if-pf-pe-pfcc-resource-kit-ext-web.pdf

I’m going to leave off here as my experience with AHS has been the complete opposite of the four points above. More soon.

Update on my heart CT. There’s been a bit of an enlargement in my aortic root and the nearby aneurysm has grown a tiny bit too. Surgeon suggests I’m no longer a good candidate for further repairs. Will post his report here when I can.

OOPS

Had to happen eventually, called the cardiologist and left a rude’ish message about… Never mind the reason, I just can’t deal with medical people any more. So the receptionist actually called back to EXPLAIN. I said the f word and the receptionist said the f word and we both hung up. Being a person with emotions is not allowed in the system here. You are always a fool who is unappreciative, has no actual experience, deserves no respect, never remembers what you are told, asks for care from people already on the edge of breaking themselves. In short, you are undeserving, impolite and now it can be said on your record you are “abusive.”

How did I end up like this? I didn’t want to be sick and the subject of everyone’s impatient judgement. Why when I ask for something I’m undeserving and when I don’t ask for something I’m being a typical, uncooperative, self-centred, passive / aggressive male? Why is that people who should know something about me (it’s on my record) treat me like I just appeared from empty space?

As you would expect, I have a new policy. I will have postcards printed with my name on them and will converse by written word. Or just not at all.

Positive

Saw the cardiologist and found it was great to learn that she’s current with my history. As said before over and over the communication aspects of receiving medical care are essentially absent here. No one seems to know anything. There’s no sense of there actually being a person with my name or history on the books except for those brief moments when I’m actually face to face with a doctor. In the case of my cardiologist, that’s two ten minute meetings in about a year and a half.

Felt very strange to talk to someone who knows my medical challenges.It isn’t that there haven’t been problems with the department she works in but it’s amazing how someone “knowing” you matters. The cancer people have made it clear they aren’t interested in anything about me. I do two more blood tests for them and I’m gone.

Only glitch with the cardiology people is an appointment I was supposed to have right after chemo was done. I had been booked for heart surgery before chemo. Then it was decided to do it after I was done with chemo in the spring and apparently the surgeon, like everyone else, lost my file so I need to wait for more months until I find out about surgery. The deal is, if there is no word by April we call the cardiologist and she reminds the surgeon.

As for my family doctor. She’s still on holiday and I’ll run out of the medications she needs to prescribe in a week. Four days without meds and my heart goes erratic and I start passing out. So I arranged with the cardiologist to get refills and I can skip the family doctor for three months. Anyway, she’s already over-booked for whenever she does get back so I couldn’t see her until mid-February.

 

There are no priorities for patients with chronic illness at the local clinic. The patient is considered, at best, a source of billable hours and otherwise treated like a stranger.

In fact, the whole medical system for rural people is an uncoordinated mess. There is a group now collecting stories like mine to see what can be done. Have sent in some material to them.

 

 

Something New

The end of this week I have an appointment with the cardiologist. I’m on some kind of scheduled check-in list though that changes based on reports sent in by my doctor which changes based on my doctor being in town. None of this really works but apparently the doctors haven’t been told and they still see the system as just swell. And anyway, it’s the way it is and I’ve learned to “manage” in a medical system unaware of its mistakes and delusional beliefs.

I say “manage” in quotations because the truth is there’s no particular intentional system in play to remain alive–it’s just a matter of not dying long enough to be noticed by someone who knows what to do about it. So far, it has worked out. There’s probably an argument for expecting more from a hugely expensive and exotic health care system but dead / not dead is what’s available here.

Funny, I asked a nurse calling me to request I have my 3 month blood test for cancer markers her call was considered “care” and she said “yes” plus it was proof of their “watching over” me. Suppose that is a semi-accurate indication of care? They don’t call the patient if no markers are found so I asked how I would be able to distinguish between missing a phone call and not getting a phone call? It seems this is something that doesn’t happen. Did find out later that blood tests done at my hospital and faxed to their lab 300 KM away is known in the industry as an “unattended clinic” allowing the request by phone or mail to be declared “patient contact” even though I saw no one. Magic? Yes.

Have been reading about Complex Project Management searching for a clue to the notion that my doctors have that they are “providers of health care”. Are they crazy, or is it me? (That’s the first condition that needs to be resolved in the study of organizational weirdness and it does MATTER. So I’ll have to get back to you on this).

edifiedlistener

Be well, be edified and enjoy!

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