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 really don’t use the word “ain’t” …

Some of this information is found in some of my other posts. I’m putting them in one easy place as it’s likely you may forget a thing or two should you find yourself in the same position.

Remember firstly, you or your spouse/family member need to be your advocate and speak for you when you can’t, or you forget — the healthcare system will do everything they can to ensure they don’t spend any money on your care — you need to prepare for a battle to get care at home.

1. You don’t need a nightgown or pyjamas. After a mastectomy, the nurses and doctors need access to your chest so you’ll likely have a hospital gown on.
2. CCAC. They should contact you the day of discharge to make arrangements for home care. Make sure you speak to your surgeon BEFORE GOING INTO THE HOSPITAL!
3. Bring very loose clothes to change into for your day of discharge: your arms and shoulders will be stiff and you won’t be very mobile.
4. Did you buy your post-surgery camisole yet? If not, get one. They have easy pockets on the inside for the JP drains you’ll be sent home with.
5. Ok, bring a toothbrush … unless you have someone to help with your hair (if you have any left from chemo), don’t bother bringing a brush or comb. Your arm/s and shoulder/s will be too stiff to brush or comb it.

Have You Made All the Plans Necessary?

1. When you get home, do you have enough food to get you through at least 4 weeks?
2. Do you have friends and neighbours home during the day to help with meal preparation, going to the store for last minute items, etc.? If not, get their phone numbers and ASK FOR HELP! I have been independent my entire life and this is and was the most difficult thing I had to do (and still have to do from time to time).

Dr. Ewan said I shouldn’t be able to use my arm for at least 2 weeks (lymphoedema is a possibility- link opens Wikipedia) and here it is 5 weeks later and the one arm is still not 100%. Thankfully, I have a deli about 1 mile from me and am able to drive for short distances … even though I probably shouldn’t be driving yet.

The first 2 weeks, I used GroceryGateway.com to order groceries: I wasn’t happy that I had to order $45 worth of food though … I’m one person with limited mobility and not much of an appetite so trying to order $45 worth of food was tough.

It was about 4 weeks before I could shower myself … and I can’t really get to my armpit due to the stiffness I still have.

I’ll add more information shortly …