A Diet to Die For! Breast Cancer in Canada.

It was a dark and stormy night, as Edward Bulwer-Lytton might write about this episode of my cancer care. Actually, the cancer is the easy part …

On Wednesday, April 8th, I’m told by my primary nurse that CCAC wants to know if I can drive to a clinic or provide my own dressing changes. I was furious — I’m already agitated after 9 weeks of daily visits from nurses who never come at the same time every day — they call me the night before to let me know what time they’ll be coming and then call again the next day anywhere from 15-45 minutes to let me know they are on their way. I once asked Bayshore if they could give me a specific time slot. Oh no, one nurse proclaimed — they are very busy with “important” things to do and couldn’t possibly make such an arrangement.

I called my case manager at CCAC and left a scathing voicemail message — saying it was fucking outrageous that I should be expected to drive to a clinic or change my own dressings. She called me back within the hour and told me I was rude and demanded to know what nurse gave me that information. I didn’t comply with her request — she knows who she asked and I’m not about to rat out my primary nurse who has been a quasi-advocate for me. Nor do I want my primary nurse to lose her job because she was merely asking the question on behalf of CCAC and her nursing supervisor.

Is it that difficult for the nursing supervisor at Bayshore to let the case manager at CCAC look up my chart and see, not only that Dr. Ewan prescribed wet-to-dry daily dressing changes, but the nursing notes should indicate I’m still not 100% mobile in one arm, making it challenging to either drive to the clinic or do my own dressings?

In my opinion, the Bayshore supervisor and CCAC should not involve the primary nurse or me the patient in this administrativia.

The case manager at CCAC says I misunderstood — she was merely asking the question, not telling Bayshore to cut me off of home care. I’m quite sure I didn’t misunderstand — the sole purpose of asking the question in the first place is to find out whether or not I can be dropped for in-home nursing care.

My case manager also tells me that their new directive [from the Ministry of Health] for 2009 is to get all patients to clinics, rather than home-care? Wow, I hope I’m never sick again because if that’s even remotely true, emergency rooms and doctors’ offices are going to be filled to the brim again — I live 5 minutes away from a major hospital and the Bayshore clinic is 20 minutes of highway driving — what do you think my choice would be if they told me I can no longer have in-home nursing care? I’ll be happy to let the bureaucrats fight it out with each other — hospital administrators will be clamouring for bigger budgets and the Ministry of Health will be wondering why there are more people in emergency rooms: it will be a duh moment indeed.

Are all the nursing agencies the Ministry of Health and/or CCAC that inefficient?

Is anyone listening? Does anyone care? Who the heck is running the Ontario healthcare system — consultants? It sure isn’t being run by people who have ever needed health care — otherwise they would see the folly of their ways.

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 …