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 still haven’t quite figured out how to organize this blog and what everything means, but at least I’m more organized than Canada’s Health Care System.

Throughout all the testing I was going through and  in all the months it took to complete the tests, my breast cancer tumour was doubling in size every few weeks.

I’m not an intellectual giant by any standard, but didn’t it occur to anyone that spending months on testing might be a bad thing for the cancer growing in me? Apparently not. By the time I was diagnosed in November, it still took 3 months to get a date for surgery.

In no particular order, these are some of the tests and/or doctors I had seen:

• September, 2008: Annual physical which included a mammogram.
• October, 2008: Received letter saying my mammogram was clear.
• October, 2008: I also had a very bad cold at this time and Dr. Ciara (family doctor = fictitious name) sent me for a chest x-ray.
• Dr. Ciara: she initially thought I had a blocked duct or cyst because the Mammogram in September came back clear — I found the painful lump in October: just a few short weeks after the Mammogram. Did you know that by the time you have found a lump in your breast, it has likely been growing for up to 10 years? This is a typical scenario for women who have already gone through menopause (I’m only peri-menopausal which means I still menstruate).
• After the anti-inflammatory drugs Dr. Ciara prescribed which didn’t do anything obviously, she got me an appointment for an ultrasound the same day — this is now about 4 or 5 weeks after discovering the lump.

Dr. Ciara, before I go any further, is fabulous! She really made sure I was seen by specialists within days!

• November, 2008: Ultasound — the Lab Doctor indicated that he didn’t see any fluid that would have indicated a cyst or blocked duct, and wanted me to have a biopsy.
• December, 2008 (4 days after Ultrasound): I met with Dr. Indiscreet, a surgical oncologist.
• December, 2008 (1 week later): needle biopsy in hospital.
• December, 2008 (next day): I kept the original surgical oncologist’s appointment with Dr. Ewan (thankfully!)
• December, 2008: meeting with Dr. Chemo
• January, 2009: various follow-ups with all the Doctors involved.

From here, there are tons of other appointments done at the hospital:

• CT Scan (3-4 hours)
• MRI (1-2 hours)
• Bone Scan (5-6 hours)
• Echocardiogram (1-2 hours)
• Chest X-Ray — this would have been my 3rd chest x-ray! In June, I saw a dermatologist for another issue and she thought I might have had asthma as a child (I didn’t). The 2nd chest x-ray was just a month or 2 from this one. Would you believe that because the previous chest x-rays were not completed at the hospital, they wanted me to have another one? Couldn’t they have just asked me to pick up the film at the lab, which is across the street from the hospital? Talk about a waste of time (mine) and money (the government’s)
• Pre-Surgery (up to 6-8 hours).  First you stand in line to register at the pre-surgery clinic and they give your file to carry around. Next stop is another waiting area to meet with a nurse. Next stop is chest x-ray.  Next is blood work (Lots of blood work — up to 30 vials of blood). I don’t have any heart problems so didn’t need to see the anesthesiologist.

The list goes on … the majority of the time spent is waiting … and waiting … and waiting. Bring bottled water and a good thick book to read.

When my mother had cancer in the 1990s (see blog page That was Then. This is Now …), all the testing was completed within a matter of days in the hospital.

It seems that all costs and responsibilities of our health care is passed on to  individuals.

Not only do I have to deal with the fact I now have breast cancer, I have to figure out how to earn a living while going to all these appointments … could they make it any more stressful?