A Diet to Die For! Breast Cancer in Canada.

I know. They are actually called extensions (why the name change for the same thing, I don’t know). So what have weaves and extensions got to do with breast cancer or Canada’s health care sytem?

It’s all fake baby [check out Alex O'Neal's video called Fake -- if you dig Morris Day, Jam & Lewis and Prince's sound from back in the day,  you'll like this one, too].   That’s what weaves and our health care system have in common. We’re just walking OHIP cards to hospitals and not people.

Since I’ve got nothing but time on my hands, I’ve been watching a lot of television — I was on narcotics the first few weeks of recovery and found myself unable to retain much information so didn’t read much more than the local newspapers. As fun as that sounds, it really wasn’t much fun.

The segue about weaves being that one evening while watching television, a commercial, a commercial that I’ve seen 100s of times before, about some kind of shampoo, had these young women, all with absolutely gorgeous and flowing long hair. Or did they have natural long hair? Hmmm. I’m sure I spotted a line going across one woman’s hair that reminded me of a weave … can’t short hair be shiny and sexy?

I don’t know how many people from CCAC, Bayshore (the nursing company), Red Cross and whoever else walked through my front door and said to me in such a caring voice that they would be my advocate and ensure I got all the help I needed. Utter nonsense! The truth is that they only care about their own skin and making sure they have a job tomorrow and the next day — that’s it.

Here’s an example of what happened to me.

My incision always feels wet, but I’m still not mobile enough to really do much of an inspection. I called Bayshore on Wednesday (February 25th) to ask if they could send someone to see me — the nurse on Monday told me that the nursing supervisor now has me on 2 visits a week: Tuesdays and Fridays. She said that since she’s there on Monday, I won’t see anyone until Friday. I knew I wouldn’t be able to wait two days to see anyone and why I called them.

The nurse who came Wednesday afternoon said I need to get to a doctor immediately — my incision is oozing profusely with a pus-like liquid substance. Her instructions were to also get a prescription for dressing changes and thinks I should be on daily visits.

Dr. Ewan (the surgeon) wasn’t available, but I was able to get an appointment with Dr. Ciara the next day and when I arrived, I didn’t have to wait at all — the staff ushered me into an examination room immediately.

Dr. Ciara agreed that I needed daily visits from a nurse, wrote a prescription and instructed me to call Bayshore & CCAC  immediately after getting home (yes, everyone used the word immediately a lot over a 24 hour period). She also said that each organization has a different protocol and if they need her to fax it to them, just have Bayshore call her and she’ll oblige.

I called Bayshore when I got home, spoke to Nadia, and it was total confusion from that point forward. Why didn’t the doctor fax the prescription? I did what the Bayshore nurse told me to do; go to a doctor and get a prescription for dressing changes. I was bombarded with comments about my family doctor and other ridiculous comments.

STOP!

I did what the Bayshore nurse told me to do and the doctor did what I asked. It’s that simple.

This is urgent and does it really matter that I have the prescription in my hand and am making the call myself?

Nadia asks me if I can fax it and I tell her that I can make a photocopy of it and give it to the nurse when she comes back on Friday.

The nurse on Friday calls Bayshore (her boss) from my home and lets Nadia know that she has the prescription in her hand and will be faxing it to her when she returns home.

I can tell that Nadia is again confused about why I have the prescription and not them (Nadia appears to have completely forgotten the discussion I had with her less than 24 hours ago), and the nurse keeps saying “I have the prescription in my hand and am looking at it”. Nadia apparently transfers the call to the nursing supervisor and the nurse keeps repeating herself that she has the presciption — the nurse must have been on the phone with these numpties for about 10-15 minutes. It reminded me of an SNL skit.

After getting off the phone, the nurse tells me that they didn’t receive these new instructions. I was furious! I said I had spoken to Nadia directly the day before about the prescription. The nurse is in quite a tizzy and is now concerned over her own job — she attempts to coach me about what to say regarding why she didn’t remove the last JP drain. After a few minutes, I tell her it’s my decision not to have it removed today — I want to take a Tylenol about an hour before a nurse comes so I’m not in so much pain when it is removed.

She asks me if I’m also mad at her, and I tell her that I’m angry at the entire health care system, and you are part of it.  I really don’t feel like being politcally correct — hell, I’m the patient for God’s sake in a forsaken land known as Ontario health care.

Yes, this conversation about the JP drain is occurring simultaneously with the prescription. Unbelievable that the nurse is more concerned about her job than my health!

After the doctor’s visit on Thursday afternoon, I also call my CCAC Case Manager and left  a voicemail about the new order from my doctor.

Someone whom I’ve never spoken to before from CCAC calls on Friday and says she didn’t know about the prescription, but that she authorized Bayshore to see me daily for 2 weeks, and then I’ll be re-assessed.

Bayshore takes it upon themselves to modify CCAC’s authorization of 2 weeks to 1 week.

The nursing supervisor will be my nurse today and my guess is she wants to see the oozing mess herself.

I can hear Seth and Amy (from SNL) saying “Really?”

———– UPDATED: March 4, 2009 —————-

After seeing Dr. Chemo yesterday afternoon, a Bayshore nurse comes to see me about 5:30 or 6:00 p.m. and as soon as she walks in the door notifies me that her supervisor wants to re-assess me. They want to change my nursing visits from daily (as prescribed by my doctor no less) to every other day.

Can you hear my faint screams yet?

I’m exasperated at this point.

I told the nurse that if I’m still oozing and the bandages soaked through in a 24 hour period, why on earth would Bayshore take it upon themselves to modify doctor’s orders?

She said that she would put in her report that my dressings still require daily changes.

Why would Bayshore Home Health attempt to modify doctor’s orders on such regular intervals? It seems every other day, they are trying to reduce my visits — and at one time, even discharged me 11 days after surgery — when I had to call them after 5 days of not seeing anyone to get them to come back.

I thought to myself that if I was an 80 year old senior citizen, I would be dead.

I hope someone from Ministry of Health (Ontario) reads this …

I was going to write about the decsion process of chemotherapy, but decided that CCAC needs a good kick in the ass instead.

Tomorrow, I’m meeting with a Case Manager, but haven’t seen a nurse since last Tuesday, and thought perhaps that she may have had something to do with the lack of in-home nursing care I’ve had in almost a week — I still have JP drains, dressings and large metal staples in my chest, so it’s completely unreasonable to think that I no longer need any services.

I decided to call the nursing organization a few minutes ago (Bayshore).

… let me backtrack for a second. What I find absolutely absurd is if I were a senior citizen living alone, or a meek person, I would likely be suffering in silence and likely die of the infections. There would be no advocate ensuring that I get ongoing care. I thought CCAC is supposed to be my advocate and I give them a failing mark — a big red F!

I really didn’t want to turn this blog into an editorial — I merely wanted to express the facts as they relate to my care. I think I’ll have to editorialize at times to show that our Canadian healthcare system is broken: not just bruised, but functionally broken.

Back to Bayshore … thankfully, someone answered and agreed with me that nursing services shouldn’t have terminated and assured me that I would get a visit today.

Within minutes, a nurse who I’ve seen before called me to let me know that the nursing services have been reactivated. She also said that the nurse who saw me on Tuesday should have reported that I needed ongoing care.

Apparently, someone told Bayshore to seize services as of February 17, 2009 … while I still had sutures, metal staples, drains and dressings across my chest. Only 11 days after receiving major surgery: Modified Radical Mastectomy. Did they really think I could start caring for myself? Or did they expect that every time I needed assistance, I would either call 911 or hire a private nurse?

Tomorrow’s meeting will be my first with a Case Manager. I’ve been out of the hospital for over 2 weeks and haven’t been assessed yet.

Judy H. was on holidays when I was discharged so I don’t fault her personally, but I sure do fault the system for not following up with patients immediately after being discharged: I didn’t receive any phone numbers to call and I went through all the discharge papers thoroughly. I had to sit at home and hope that someone would eventually hear my faint wimpers.

Judy’s coworker was the one who told me that her personal philosophy is that it’s the responsibility of the community to take care of me [sic]. Fuck off idiot!

It was me personally who made the intial call to CCAC to find out about any future assessment — I can’t believe they don’t have some sort of automated system in place to notify patients; especially after being discharged within 24 hours of any major surgery.

Can this system be any more broken? I certainly don’t have the answers, nor can I provide any concrete solutions since I’m on the receiving end of care, and don’t work in it.