Change approach

Occurred to me after my last phone call to the System-of-Care agent the I’ve developed a disability in speaking of my illness to others. Part of the problem is always speaking to another person. Each time I call I get another nurse or receptionist and have to start from the beginning and for some reason that disorients me. My cardiologist’s office is like this and the oncologist I’ve seen only once has now moved me to another clinic just when my chemo has put my heart at risk. Ironically, you need to be very together to be ill. It’s hard work.

Unfortunately, when I start to recount my history I get emotional and lose it. Even talking to my home care nurse, who I know pretty well (and she knows my complete history) I lose the ability to talk–literally. (Obviously there’s been little progress in recovery from the last incident with my heart, I’m still a mess).  Plus there’s the contradiction of my experience of health care givers  being advertised as “there to help” when in fact many seem either careless or actually untrustworthy.

So maybe I’m paranoid but so what? I need these people but also recognize they need me to be cooperative and rational and not some crazy sick person with issues. It confuses and distracts them for me to talk history. It also puts them on the defensive which makes me angry. This combination is not productive in any relationship and I think if wasn’t my life at stake I would have caught on much earlier.

No more history. It’s inappropriate. According to something I read last night contradiction sharpens awareness making it a useful friend.

delays

Tomorrow was going to be the second round of chemo but my blood test showed my platelet count is too low for my heart condition to manage chemo. Been sick since last Friday and tried the nausea pills prescribed and they work but since no one really reads all your records, the prescription conflicts with another condition I have. Or is actually the wrong drug or apparently any other reason that suits the moment.

I can’t survive this sloppy treatment so tomorrow I’ll stop cancer treatments until answers are given to me. It being summer (vacations) and my being out of town, I never get a chance to talk to anyone with any responsibility which means I’m being given diffferent stories by assistants of assistants and it’s time to go back to the source. The only way to get attention is to refuse treatment–nothing else get you more than reassurance.

In spite of being now close to having an incident with my heart while on chemo, the consensus seems to be I’m “over-reacting” to being prescribed the wrong drug. All I can do is defend myself as best I can. This is what having no voice eventually leads to.

Being more that one person

First round of chemo is almost over. After the in-clinic IV drip via my new “central line” tunneled catheter, I go home with an infusion bottle that administers the third of the 3 chemo drugs needed to treat colon cancer cells. So far things are fine though I can’t sleep with the pump on. It will come off tomorrow.

As usual, lack of communication played a role in this encounter with the medical system. My cardiologist never sent a “report” or message with her decision on whether my heart could take the chemo. I was able to get a doctor at my home clinic, where the report WAS sent, to read me the decision so even though my oncologist didn’t have it at least I knew we could go ahead and have my heart fixed later.

The trouble with critical diseases is a person becomes highly sensitive to things like not being told treatment details, cancelled appointments and promises of support that don’t work. From here a person assumes DANGER when really it’s just the usual bullshit of a normally operating system run by humans. Sure these people are more likely to kill you, but you are also closer to death–so don’t sweat it.

The truth is, when they do cause your death there’s already a story in place to cover their ass and gosh, they meant well anyway.

So I’m thinking the physically damaged part of me is going to live in the world of bad communication and careless-to-my-emotions reasons why medical people are absolved of blame and I need to back away from their need to be right and focus on my undamaged self. Yes, it’s important that people in charge of your life have human skills but I’m tired of asking for them to actually care, their acting is the best I’ll get and like most, they suck at it.

Funny, I’ve always felt I didn’t belong anywhere and it’s made me invisible. So invisible patient I’ll be. Not talking allowed when you can’t be seen. Learned that from Harry PotterJ

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.

Distance

No word yet from my cardiologist on the results of my “rushed” CT scan done at 8am last Thursday. They now have 3 scans of my heart but seem unable to do anything. (The top of my heart and the implanted aortic valve #2 are coming apart and the chemo might kill me).

We are 3 hours away from the clinic and I would go in but it’s an all day trip. So I phoned the Cancer Clinic to ask if they could contact my cardiologist, (in the same building) as the number given out for contacting the cardio is not for actual use. Though it does look good on her card–almost like she cares.

No call back from the Cancer Clinic so I now have another number to call if that doesn’t work but makes it look like they care. (Even if they can’t see you, it’s nice that they care).

Telling people their pretty help system doesn’t work, whether they are a school offering online courses or a hospital offering emergency services, will get you unbelieved if not banned from calling them. Once a person realizes the system parts don’t work, other things they tell you become suspect. Why train people at great expense when the simplist part of their little professional circus make people not trust them?

Frustration

Last night we drove the 3 hours to the city to stay in a hotel so I could get to my 8:00 am CT scan appointment. While this procedure was supposed to have been ordered by my Cardiologist there was no mention of it on the requisition. Since it appears my second aortic valve implant is being affected by a nearby aneurism, the cardio needs to decide if I can take the extra load that chemo will place on my heart. But as no record of the cardio on the order, nor a consultation with her was booked, we spent 6 total hours on the road and hotel costs for a 1 hour appointment for the CT that was performed less than 100 feet from her office.

Besides the surgery and the important prior check-up with the surgeon, we have had 3 single appointments that cost us a full day each for less than 10 minutes at each appointment:

Intake GP who hardly looked at me and scolded me for my “attitude.”

Consultation with Anesthesiologist who had very old records from my first surgery and ordered I see the head of surgical admitting to be sure they could admit me into intensive care if things “went wrong.”

Surgical admitting who made very light of bed availability, treated it as a joke.

It’s obvious to me no one considers that I am from a log way away or that my time and how I feel matter. They all talk about how “caring” the system is or how “complete” the coverage is. When I tell them this magical belief is not born out by reality, they refuse to listen or get mad.

For instance I’m now on two “critical care” lists that include direct lines to “help.” Both are only staffed 9 to 5 on week days and only take messages after putting on hold for up to an hour. Since no one phones back there’s no reason to leave a message so the back-up is the suggestion I see my local doctor or go to emergency. My doctor is a 5 week wait to see her and the hospital killed me last time I went there. In the magical land of medical belief, this isn’t the way things work so there’s nothing I can do–except display an “attitude.”

Probably now that I have their attention there will be another round of bullshit appointments over this and I’m done playing and will refuse to cooperate. This last surgery was very painful with all the clumsy needle work the anesthesiologist’s assistants did searching for arteries plus the pain in my incision frequently flares up but there’s no one to call so maybe I’ll just stop all this and take my chances.

Tomorrow I might hear the latest scheme. No more appointments or check-ups. Treat me or leave me alone.

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.

 

Some Results

Being not particularly smart at 5:30 am when we left for Edmonton we ran out of gas and were about 2 hours late to see the oncologist. (Three hour drive each way from home to the city and we are usually ready for things like gas stations on country roads being closed by always filling up. Not today). As it turns out they run a continuous intake until noon so I was fine being late–and we didn’t even have a fight in the car over whose fault it was! So that part worked out.

My CT scan shows no detectable cancer got past the tumor which is now removed. Statistically though the cancer cells may still be in there somewhere, so I get chemo for 6 months by IV. Could have had pills but they aren’t as effective. Two days every two weeks for treatment at the clinic which can be moved to a nearer one about 1 1/2 hours drive each way. This is still a sparsely populated area and that’s the closest. Our local hospital, which is 5 minutes by walking distance from my house doesn’t have enough cancer patients to warrant a clinic. Plus they are totally incompetent and a danger to healthy people. If you are sick, definitely stay away from them.

The CT also picked up a swelling in my heart at the exit of the aorta where my artificial valve is installed. This area was patched with mesh when it blew out along with my first artificial valve. Since my cardiologist knows nothing about this (nobody communicates) there has to be a consultation with her before chemo. Will also involve my colorectal surgeon, my new oncologist and my doctor. That’s 4 women “on my case” which sounds like blues classic so I think I’m safe. For now:-)

Date for things to start happening is expected to be August 11 for my IV tube to be installed. More when I find out.

Emotion

Tomorrow is the appointment day at the cancer clinic and the part of this process you don’t get to hear are the fights and meanness that comes out Leslie and me as the uncertainty grinds on us. We don’t mean it, it just comes out, so these songs that make you cry are for my Wife Leslie and my friend Maha who grieves for her Dad.

Al Green- How Can You Mend a Broken Heart (Live on Soul!, 1972)
https://www.youtube.com/watch?v=K9YIq0oNiSM

Try a Little Tenderness Florence + The Machine – Try a Little Tenderness- MTV Unplugged.mp4
https://www.youtube.com/watch?v=MrszoJDnPks

Dana Fuchs – I’ve Been Loving You Too Long
https://www.youtube.com/watch?v=pgvX5-gV3qI&list=RDpgvX5-gV3qI#t=26

Love never ends.

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.

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