Thursday, October 31, 2013

i positively like this

Among the many sentiments that can make me apopletic, the idea that if only women with breast cancer "stay positive", they will be just fine might just get to me the most.

I was pretty damn positive during my initial treatment for breast cancer and yet here I am. I remained postive through my five years of remission (and ongoing treatment) and I was relatively upbeat during my brain surgery, almost a year ago.

I think it's a good idea, generally, not to wallow in my sorrows because it's so much harder to live that way - but I don't think the positive live and the negative die. Not for a moment.

It's natural that we want to believe that survival after breast cancer is within our control and some things certainly are. But not everything. And I think that's why those of us living with breast cancer can make "survivors" feel kind of uncomfortable. We're they're worst nightmare.

There is a real temptation for news outlets and others wanting to highlight the positive during breast cancer awareness month (and at other times) by ignoring women with metastatic breast cancer completely.

katherine O'Brien  (of I Hate Breast Cancer) wrote to a local television station after just such an episode. Please take 5 minutes to watch. Your jaw will drop, I promise.

Click here to watch Breast Cancer Awareness. Stay Positive 2.0

I'm positive that I take great comfort and inspiration from women like katherine and others living with metastatic breast cancer who are not afraid to speak out.

Monday, October 21, 2013

3 weeks later

If you'll recall, I was hesitant to have my port put on my right side because of my truncal lymphedema. I figured that if I'm not supposed to cut my right arm, or even have blood pressure taken on the side, then I probably shouldn't have surgery either. After all, I have very little lymphedema in my right arm and lots in my back and chest.

Well, I have even more now. And it's really uncomfortable. And the site of the surgery also became infected.

I was put on antibiotics for a week. At the end of the week, I saw only a tiny bit of improvement in the wound and the antibiotics had made me sick. And they made me weak enough that, as I was recovering from the antibiotics, I contracted a brutal gastrointestinal virus.

It's been five weeks since surgery and I still don't feel like myself.

And tomorrow, I have treatment.

But at least I'm writing again and riding my bike and going for walks. And the wound, is finally healing.

I think I need to put all of this in a letter to the hospital. An open letter.

Until then, I'm back. And happy to be here.

Wednesday, October 02, 2013

as it should be.

I had a doctor's appointment today. 

The right side incision (the one where they put in the new port) hasn't healed properly and the area around it is angry and red. There's a spot on my neck where they entered the vein that is also a bit infected. 

Despite my fears that I was being a worry-wart, I was taken seriously. The doctor took a swab of the wounds and gave me a prescription for an antibiotic. She felt around the area of the port to make sure that it wasn't tender. She thinks it's just a surface infection but if the port area gets sore or the infection seems to worsen, I'm to go to the hospital.

The doctor I saw was replacing my GP but works in her practice. She and the nurse I saw today seemed happy to see me and were genuinely empathetic and compassionate. None of my concerns (I also brought an ingrown toenail to their attention) were dismissed or belittled. They were patient and thorough. And the starting point of our conversation was that I know more about my own body and some of my medical experiences than they do.

When I left, I was practically crying with gratitude.

And then I got angry. Shouldn't this be the treatment that every patient should expect at every medical visit?

Tuesday, October 01, 2013

welcome to October

My Facebook and Twitter feed is filled with exclamations. No one can believe it's here. Neither can I.

Welcome to October.

Is it just be or is the annual deluge of pink crap just slightly toned down this year? Maybe I've just had my head under a rock. I was literally offline for a week and it's been longer than that since I've been in a store. I don't listen to commercial radio or watch television that isn't Netflix, so I've been pretty sheltered, so far. I'm thankful.

I'm still astounded at some of the awful pink stuff out there and I'll be featuring some of the best throughout the month, along with genuinely topical and even helpful information about breast cancer and the organizations and people who are out there doing good work.

In short, you can come here this month, if you're in need of some pink de-toxing. This is a pinxploitation free zone.

For today, here is a letter I wrote a couple of years ago, to Q on CBC Radio, that was the Letter of the Day.