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.

This is a post I’ve hesitated to write.

For the most part, the people I’ve met along the way — the men and women working within the health care system — have been quite good and at least try to be compassionate.

There are unfortunately those who make dealing with cancer even more challenging than it should be.

One particular instance I don’t think I’ll ever forget — and when I’m healthy enough, I will write a formal complaint; it was during my pre-surgery appointment. Bear in mind that I am in a cancer centre which I find makes this person even more vile. It was one of the final appointments of the day and it was during this time that I had approximately 30 vials of blood taken from me.

Dr. Chemo also gave me an appointment for blood work the next day, and I asked the receptionist at the blood clinic if they could combine the 2 tests so I didn’t have to come back. An inocuous question I thought. And an obvious question. I had been through the pre-surgery appointments for almost 5 or 6 hours and really didn’t want to take an extra day off to come back — and I had been poked, pinched and prodded enough already.

The receptionist said no problem and told me to let my technician know — she is supposed to call Dr. Chemo’s office (around the corner and down the hall from where I was) to let them know.

When it’s my tun, I ask her if she’ll combine the 2 tests.

I don’t think she ever answered me. She walked away. Sighed. Put her hands in her pockets. I’ll never forget what she was wearing — my guess is that she is approximately 21 years old, had long black hair, wore glasses … and had red pants on! I thought to myself that she’s a bit chubby to be wearing red, but hey, who am I to judge.

I’m so glad I paid attention to what she was wearing, as I should be able to identify her the next time I have to go to the blood clinic in the cancer centre.

She comes back, points her finger in my face and tells me that this will be the last time they will combine the tests for me — if I have been given 2 appointments in the future, I’m to keep them — she tells me I have now been warned never to ask again.

My response to her was that I’ve never had cancer before and didn’t know the rules.

She just stared at me.

I think I quietly cried to myself through the entire blood test.

30 vials later … as I’m just sitting there, not sure what to do or if I can leave …

She doesn’t say anything — she hands me a cup that I’m supposed to urninate in, but doesn’t tell me where the washroom is. When I come out, she doesn’t tell me where to put the darn pee.

I couldn’t have felt less than a human being than I did that day.

And it was completely unnecessary on her part … I wasn’t a bitch or nasty or condescending to this person: although it took everything in me to keep quiet: she had needles and was in a position to really hurt me so I kept my mouth shut.

As they say, time heals all wounds ….

But this story doesn’t end there …

3 weeks later … and half an hour before I’m about to be rolled into surgery, the nurse says she can’t find part of my blood results.

You guessed it … the blood technician lost my results!!

Coincidence?  Somehow I don’t think so.

I asked surgical nurse if she could lodge a complaint against the blood technician when I told her the story. She said that I could complain, but not her. I asked her if she thought it was incompetence and if she thought it was, can’t she say anything to someone? She said she would make a call to the blood clinic.

I will definitely make a formal complaint.

Why work in the health care field, and especially in a cancer centre, if you treat people like garbage, Miss Bitch-in-the-Red-Pants?

The persosn from the Cancer Society who drove me there says it sounds like they (the hospital and all the various clinics within them) just want to be able to swipe my OHIP card again.

Yup, I’m a walking OHIP card, and not a person … this is my mantra sadly.